All About Ava

Think it's the end of this blog...

2011-06-26T18:27:00.000-07:00

I started this blog almost 2 years ago in the hope that I would learn and express my feelings about autism -- a disorder that has made it's way into my life via my daughter's diagnosis. I wanted to sort out my feelings and describe this journey as best as I can.

I've gotten to the point where I want to respect my daughter's privacy. She is starting to thrive. It's been a long, tiresome journey thus far -- but we have a long way to go. Not that I don't want to celebrate her accomplishments, I love to brag as any parent does. But I have to focus my energies on a higher calling -- educating the public.

So I am starting a new blog. To be announced soon.

In the meantime, I want to share one of Ava's successes. To a parent of a child with autism, it is what I've been waiting to hear:

Will They Ever "Get It"?

2011-04-10T20:06:00.000-07:00

I am so grateful for the people in my life - family, friends and acquaintances - who completely understand what it is like to raise a child with special needs. I am indebted to their kindness, generosity and compassion. I appreciate their desire to learn about autism and how they treat Ava as if she is any other child. I am thankful for the resources they've connected me with to help my daughter. I do not know how I will ever repay them.

But not everyone in my life is as generous with their heart. WHY are some people so clueless? How can I get some people in my life to comprehend Ava's disorder? How can I get them to know what it is we go through as a family? Why don't they "get it"?

At times I feel so foreign, so isolated from the real world. My daughter's future is a big question mark. And I am talking about the simplicities of life -- I don't know if my daughter will ever feed herself, walk down the street by herself, go to the bathroom without assistance or be able to brush her hair. I am going to try my hardest to help her and provide her with the best education and therapy to teach her those skills. But there is no guarantee that Ava will be an adult who can function on her own accord. She may require assistance for the rest of her life.

So the pressure is on now to get her what she needs. She is still very much a baby. She is still young and her brain is forming. We got her intervention at an early age, however it was not as much as her doctor recommended. We had to build slowly because there were very few resources available.

When I get resistance from people in my life who say, "I can't help you, " or "Why can't you participate," or "Ava is not really autistic". It makes me extremely sad. If anything should happen to me -- or my husband -- I wonder if she will be well taken care of. I wonder if these people really understand Ava's needs.

I've tried everything to educate them. I've been subtle, I've been pushy and I've had other people intervene. But it is quite simple: they are in denial. I can't get them to understand. I exhaust myself trying and it only frustrates and saddens me.

But I cannot waste time on those people - I have to move forward for Ava. I just hope they become enlightened in some way.

Please support Team All About Ava!

2011-03-27T19:03:00.000-07:00

Who We Are

A collaborative of Northern NJ schools serving children and adults through individualized treatment and education programs. We are collaborating on this event and using ONE VOICE to spread the word that everyone from children to adults can help families with autism turn uphill challenges into achievements.

About “GO THE DISTANCE FOR AUTISM”

Last year was the inaugural event and we were amazed at the outpouring of support from the community. Over 500 riders participated last year and raised more than $300,000 in support of our educational programs. We were very fortunate to have the support of corporate sponsors and the helping hands of nearly 200 volunteers.

2011 Event Information

Date: Sunday, May 15, 2011

Location: Northern Highlands Regional High School – Allendale, NJ

Attendance: Approximately 1,000 people

10, 25 and 50 Mile Rides (for riders 16 and over)

3-mile Loop Ridge (for relay teams and families)

Family Ride (for younger riders and riders with autism)

Goal: To raise $500,000 in support of autism education in NJ

Please click on the link below to support our team, All About Ava. All proceeds go to Ava's school, REED Academy:

Team All About Ava

A Long Time

2011-03-20T20:24:00.000-07:00

I have not posted in a long time. To tell you the truth, I am exhausted. I, along with my husband, had a battle to get our sweet girl an appropriate placement.

And we are overjoyed. Our dear one is attending The Reed Academy in Garfield, NJ. They are moving to a new facility in Oakland, NJ in the Fall. Ava has the greatest teachers and seems to love school. We feel so blessed and so grateful that this happened.

Here is a link on Reed Academy...more to follow.

reedacademy.org

Advice on Approaching the Process of Turning 3

2011-03-20T20:18:00.000-07:00

My daughter, who has autism, just turned 3. Although this is a happy occasion for many parents, I dreaded it. Oh, of course I was happy to celebrate my daughter's third birthday. But it signified a milestone. At age three a child with disabilities leaves the state early intervention program and enters the school system. This process has educated me a great deal - something I was not prepared for as a parent. I wanted to offer this advice for parents who will be going through the same process.

First, a little background for those of you not familiar with the lingo:

An IEP is an "individualized education program". It is a document that outlines the educational goals and placement of children with disabilities. Under Individuals with Disabilities Education Act (IDEA) a federal law, a student with disabilities is to be provided with a "free and appropriate public education" from the ages of 3 to 21 by the school district.

It is a daunting task to place a child into an appropriate educational setting. An inappropriate placement can cause a child to regress or not progress and greatly affect the child's quality of life in the present and future.

KNOW YOUR CHILD

It is important to know everything about your child: his/her skill level, splinter skills, behaviors, preferences, etc. Beware of anecdotal advice, i.e. your mother in law tells you that your husband did the same thing when he was your child's age or your neighbor telling you her son has the same obsession with spinning car wheels. This advice is well-meaning, but it will not help your child get the services and education he/she needs to learn.

Do not gloss over your child's needs. Do not dismiss any behavior. And do not underestimate your child.

How do you do that? Get your child evaluated - by experts, not just the school district's child study team. Get written reports on your child by educated, experienced professionals in the field. Get to know the top experts in the field. Read their books and attend lectures. Obtain data on your child through testing and trials, so you can document trends in learning or regression. Ask your child's therapists to assess your child's skill level and document it. Know all there is about your child - because your knowledge will be challenged.

If you can't afford to get your child evaluated by an expert, sometimes you can get reimbursed for this service by your school district. Network as much as possible to see if you "know someone who knows someone". Several of the evaluations I had for my daughter were from friends of friends of friends.

GO INTO THE PROCESS WITH AN OPEN MIND, A HEART FULL OF GRATITUDE AND YOUR WITS ABOUT YOU. KEEP EMOTIONS IN CHECK BUT ADVOCATE YOUR HEART OUT.

I have the utmost respect for people who go into education - especially those who work in special education. Where would my daughter be without these professionals? Approach your child study team with respect. Expect them to treat you the same way. You are a team and you all must work together as a team.

Be open-minded about evaluations of your child. Sometimes parents get offended or hurt by the findings in the evaluations or the assessments of their child. Don't look at these findings as a criticism, but as a stepping stone to get your child the education and services he or she needs to succeed and thrive. It may be an incorrect assessment, and if you think so, get a second opinion. Or third. But address it. Do not sweep anything under the rug. Know your child's strengths and weaknesses like the back of your hand.
It is important not to get emotional during this process. This is so difficult when it is your child they are talking about. Emotion is perceived as a weakness and gets in the way of negotiation. Squeaky wheel is OK but screaming and crying works against you.

BEWARE OF POLITICS

Sometimes politics can get in the way of making an appropriate placement. I know one school district that places a child in their in-district program regardless of whether it is an appropriate placement. They wait for the parents to fight it. There are school district employees that do not have a child's best interest in mind, but there are many of them who strive to give children exactly what they need.

Note to self: DO NOT LET ANYONE MAKE DECISIONS ABOUT YOUR CHILD UNLESS THEY KNOW YOUR CHILD'S NEEDS.

KNOW YOUR RIGHTS

Special needs law is tricky and it is emotional. Learn to be a negotiator but know what your rights are. I bought the Wrightslaw books. I attended free seminars in preschool transition. I went to lectures given by special needs lawyers. I took advantage of free consultations with special needs law professionals and advocates. I did my homework. It was a full time job.

If you are ever in doubt, don't sign anything. Go home, ask other parents who have been through the same thing, consult the Legal Aide Society, ask resources about it. But never agree or sign anything unless you are 100% sure of the outcomes, pros and cons or repercussions.

BE COOPERATIVE, NOT ADVERSARIAL - BUT DO NOT BE TAKEN ADVANTAGE OF!

I had a plan of where I wanted my daughter to attend school. I wanted her to be in an environment that met her needs and provided the best clinical approach to her needs. I did my homework and found where those programs existed.

I did, however, go in with an open mind. I wanted to learn about programs I never heard of. I wanted to see what the district had to offer. I wanted to see inappropriate programs and compare them with appropriate programs. I decided to be flexible. Even when I made a suggestion, I always attached the disclaimer, "I am open to anything you have to offer."

However, sometimes if you are too nice, it sends the message you can be suckered or duped. At an informal meeting in my district's Special Services office, I was asked to write a letter granting my school district more time to find my daughter an appropriate placement. They were so nice when they asked me, of course I agreed to do it. When I got out of the meeting, I felt unsettled. I called an advocate who told me "DO NOT DO THAT!" If I had written that letter, I would have surrendered my daughter's rights to a free and appropriate public education by the age of three. I felt tricked and was angered that I was so willing to please. But I refused to write that letter and gave the district the excuse, "I am not comfortable with that." And then it was over.

DON'T SETTLE ON ANYTHING. DO WHAT IS THE "BEST" FOR YOUR CHILD.

We are told NEVER to use the word "best" when dealing with a child's education. The law states "appropriate". However as parents, we HAVE TO WANT WHAT IS BEST. A child without special needs is entitled to the best -- why shouldn't a child with special needs? In the case of autism, which is my daughter's diagnosis, an incorrect placement can greatly harm a child, trigger self-injurious or dangerous behaviors, cause regression or stagnation and be a finacially-draining legal battle to get the child into an appropriate placement.

And never let anyone tell you, "an IEP is just for one year, it can be fixed". Well, that is true, however, you have to see the future and plan for the future. Don't sign off on an IEP that is half-baked or does not address any concerns you have for your child. Yes, IEPs can be changed and altered, but they should not be haphazard mess of unreachable or unmeasurable goals.

And finally, DO NOT GIVE UP, GET DISCOURAGED OR GO TO BED ANGRY

The worst thing you can do is to throw your arms up and surrender. If you know your child, your goal should be to get your child what he or she needs. It can be overwhelming. It can be devastating, but it is never over until it is over, to quote Yogi Berra. Also, doing things out of spite or anger is only counter-productive. It is hard not to get emotional when it is your child. However, if you wisely plan your actions and responses in a calm manner, a lot will be accomplished. Oh, there are times where I wanted to rush in with guns blazing, but I would try to think of something funny or take a deep breath to equalize my thoughts.

Best of luck to all of you on this journey. I managed to get my child what she needs. It was hard work. But I would do it all over again.

Just call me JOHN Q

2011-02-10T20:45:00.000-08:00

Have you ever seen the movie, John Q starring Denzel Washington? John Q is the story of a father whose son is diagnosed with an enlarged heart. He finds out his son cannot receive a transplant because his insurance will not cover it. John Q decides to take a hospital hostage until the hospital puts his son's name on the recipient's list. The son gets the transplant but the father is charged with kidnapping and taken to jail. Not a happy ending, but a testament to what a parent will do to save his child's life.

I feel like John Q. My daughter has autism and the school district I live in does not want to send her to an appropriate program that will help her get better and have a fulfilling life. Like John Q, I have to fight to save my daughter's life. If she does not receive an appropriate education, she could remain stuck in the abyss of autism.

The school district disagrees as to what constitutes an appropriate program. Under IDEA, a federal law, it mandates a "free and public education" be provided to all children with disabilities upon their third birthday. Our daughter turned three two weeks ago.

The district has tried several tricks to get my husband and I to agree to "no win" situations for our daughter, namely:

1) Asked us to author and sign a letter giving them more time to find an appropriate program for our daughter. This letter would in fact, relinquish our daughter's right to a "free and public education" by her third birthday, which is the law. Of course, they did not tell us of the consequences of writing this letter when they so sweetly asked for it. Of course, we did not write it.

2) They tried to get us to send our daughter to a public program which is not appropriate for her with the unwritten "promise" that they would send her to an "appropriate" program when an opening occurs.

3) Tried to send her to their already deemed inappropriate in-district program for 2 hours a day as an interim placement (of course not telling us it would be nearly impossible to get her out of that program once she starts).

4) Refused to continue our daughter's in-home services offered by Early Intervention while an appropriate placement is found.

They basically want to send our daughter to an inappropriate public preschool disabled program -- BECAUSE IT IS CHEAPER. They have not offered her any services because they know she will begin to regress and we will become desperate. They know we are not wealthy and eventually will run out of money.

I've done my research. I've had my daughter evaluated and tested. I've had experts recommend what she needs to learn and thrive. I know what is best for her. I also know that if she not in an appropriate program, she WILL regress or cease to improve. It is not important to educate my daughter, in their eyes, because she is ineducable to them. They want to babysit her until age 21 when she will then receive public assistance.

Of course, I am angry. She is an innocent, non-verbal child with a capacity to learn. However, it will take a village, literally, to educate her. It will take specialized methodologies. But it can be done, I know it. My daughter is worth educating.

So we've hired a lawyer. We are fighting an expensive and exhausting battle. We eventually will win. But the battle is going to be epic -- all to educate a beautiful little girl.

I won't be taking any hostages or breaking any laws, but I will do everything and anything to get my daughter what she needs to have a fulfilling life.

This is our daughter's life. She is most precious to us. Her ability to function later on in life hinges on the quality of the education and therapy she gets now. We are not a bunch of elitist snobs that only want the best for our child, we are parents who only want the best for our child.

It is just so disheartening that our child is regarded as meaningless -- or as a financial burden to the people who hold the power.

No services

2011-02-04T07:40:00.000-08:00

I am not going to go into details or offer any comment at this time.

As a mother, you cannot help but worry for your child's welfare.

Under federal law (IDEA), special needs children are to be provided a free and public education (also known as FAPE) by their third birthday which is to be provided by the local school district. Ava's therapy through the NJ State Department of Early Intervention ended on her third birthday. Ava has autism. Without consistent, proper therapy, Ava is at risk for regression or self-injurious behaviors.

Right now, I am worried that my daughter has no therapy now - and may not until a placement is found. It's only been a few days, but I am not sure how this will affect her. I do hope we have a program in place soon. Her sleep is a mess, she stims all day long and she had one head-banging incident that I hope does not continue.

That's all I will comment until there is some resolution of this matter. I am closing the reader comments for this post because I can't really discuss this at length. But send your positive thoughts and prayers our way.

I am 3!

2011-02-03T19:34:00.000-08:00

On Sunday, January 30 I turned 3 years old. The day before I went to see my Sito (grandmother) in Brooklyn. We visited the NY Aquarium and I had a blast.

I didn't sleep much that night, so I slept a lot on my birthday. Mommy and Daddy got me an iPad. I do love my iPad. There are so many cool apps - most of which, I will use at school. That is, when I get to school. More on that later. I went out to dinner on my birthday and to Barnes and Noble. Mommy bought me an Olivia "jack in the box". I like to say "pop" when Olivia pops out of the box.

I also love the "happy birthday" song. I like to sing, "happy happy to you".

Update - IEP

2011-01-23T19:21:00.000-08:00

Ava will be three on January 30. And, as of now, we have no placement for her.

For those of you not familiar with special needs issues, when a child turns 3, he/she is entitled to a FREE, APPROPRIATE PUBLIC EDUCATION under the law. Ava has very specific needs that have to be met by a pre-school program, so not just any school will suffice. I won't go into what her needs are, but she has autism, which requires intense, specific programming.

We thought we had a placement at a private school that specializes in autism. The school district was all set to send her there. And then we lost the placement. I don't know how, but the autism school did not decided not to accept Ava. I have her on the waiting list for many other private autism schools which specialize in the needs of kids just like Ava, but none have an opening right now. All of the public school programs in our area are full or are not appropriate.

So now we have no where to send Ava. And by law, she HAS to have a placement somewhere. There is one public program that wants to take Ava, but the program does not meet her needs in my opinion. The school district feels otherwise.

Also, the day Ava turns three, her services through Early Intervention end. She will have no therapy. I am sure Ava will love the free time, but it is not good for her. She may regress if she does not get the therapy she needs.

Needless to say, I am worried. I so want her to be in a program that will help her emerge through the abyss of autism. And that may sound dramatic, but a parent who cannot communicate with his/her child sees autism as an abyss. I can't explain things to Ava. I can't call her name or give her directions. Every experience is a challenge. Ava is going to be three years old and her brain is still forming. It is still possible to reach her and connect her with the world. Ava is in her own world now and really could care less if anyone else is there with her.

It's Almost My Birthday

2011-01-11T19:12:00.000-08:00

On the 30th of January, Ava turns three! She is celebrating by doing a high-fashion photo shoot! She looks like such a big girl in these photos. But she is still my baby in my heart!

The Great Vaccine Debate...in my head

2011-01-09T18:10:00.000-08:00

I wrote this essay for the blog, Living With Special Needs

As a parent of a child with autism I am frequently asked, "Do you think your daughter is autistic because of the vaccinations?"

I hate that question because it either puts me in one camp or another. And I am in neither. I'll tell you why.

My daughter was a typically developing child until 15 1/2 months. Then the bottom dropped out and she regressed and transformed into a completely different and complex child.

My beautiful baby girl was healthy and happy as a newborn and infant. She hit every milestone, ate like a champ and slept through the night at six weeks old. She was purely angelic, one of the easiest-going babies I have ever met. She loved to giggle and laugh. She smiled at anyone who said hello to her. She would watch people and her face lit up when I walked in the room. She babbled and cooed very early. At seven months old, we taught her to turn on the light switch when we went downstairs. At eight months old she grabbed my thumb, looked at me and put my thumb in her mouth when she wanted food. She pointed at things she liked in books - namely Elmo - and said "La la la la" when she wanted to watch Sesame Street. (Elmo's theme song starts out "la la la la". She loved to go to the park and swing on the baby swings. She said "hi" at nine months old. By a year, she had five or six words. She did not walk until she was 15 months-old, but neither did my husband or I. And she "cruised" along the furniture from ten months, so we were not concerned. She achieved every milestone on the checklist at her 15 month check-up.

She was sick with a cold at her 15 month check up. The pediatrician asked me if I wanted to go through with the MMR shot or wait. I asked if it was safe to give it to her because she was sick. The doctor said, "yes, it is safe". I nodded my head OK. I felt uneasy about my decision. I have Ava some Tylenol for the shot and some Benadryl for the congestion - both were OK'd by the pediatrician.
Ava's cold got worse. I took her back to the doctor a few days later. The covering physician prescribed an antibiotic for a possible bacterial infection. I asked if it was OK to give Ava antibiotic since she just had her MMR vaccine. I was told it was perfectly safe.

Ava had a bad reaction to the antibiotic. She zoned out and slumped over in a daze. We could not snap her out of it. She lost interest in learning how to walk and just wanted to be held. She wouldn't respond to her name or favorite toys. She would curl into a ball on our lap and stare into space. Our bubbly, giggly toddler was now a zombie who did not communicate.

Of course, we rushed her to the doctor who upon examining Ava told us this reaction "was the antibiotic and we should take her off immediately". We did and the zoning out stopped. But Ava no longer said words, looked at us or acknowledged we were in the room. We took her to the park and she screamed when we put her on the swing. She played with toys differently and began to eat inedible objects and substances like dirt, paper and Styrofoam. She regained her desire to learn to walk, but engaged in a lot of self-stimulatory behaviors such as hand flapping, mouth tensing and bouncing up and down. She would run back and forth repeatedly, the same path, without looking at her surroundings. I tried to read her story books like I used to, and she would not follow my voice along or point to pictures as she did before.

And I panicked once again. I took Ava back to the pediatrician and the covering doctor gave me the referral to the NJ Department of Early Intervention and a referral for several developmental pediatricians. I had to wait two months to get an appointment. I called every week asking if there were any cancellations. Finally, we saw the developmental pediatrician and Ava was diagnosed with autism spectrum disorder. She was later diagnosed with autism, sensory and auditory processing disorders.
So, the question remains. Did vaccines cause my daughter's autism? Or was it the damaging combination of antibiotics, MMR vaccine, a compromised immune system, genetics, Tylenol, Benadryl and a toxic world? Is it my age? My husband's age? The fact that we did IVF with her? NO ONE KNOWS. I saw my daughter's regression first hand. She was not the same child after her MMR vaccine, however, all of her other contemporaries who were vaccinated at the same time are typical children. Some of her contemporaries who were not vaccinated have autism. So why my child?

Dr. Wakefield's study did neither confirm or deny my daughter's autism was caused by vaccines. And since his study was deemed fraudulent, I can't help but retrace my steps and scratch my head about the MMR's role in my daughter's developmental regression. It makes the debate even more muddled. Dr. Wakefield and his supporters screaming foul play and smear campaign and the scientific community shaking it's head in dismay. As a parent, I would LOVE something or someone to blame. I would love to find out the cause - and find a cure. I wish Dr. Wakefield's study was not false, so I could find a peace of mind.

So what if Dr. Wakefield's study is a fraud? It still does not take away the fact that MY DAUGHTER HAD AUTISM. Parents and doctors need to be better educated about vaccines - and vaccines need to be administered with the child's health in mind. Babies and children are given a lot of vaccinations in a short amount of time. And if a child's immune system is compromised, how will the vaccines affect the child? We need to answer these questions. We can't condemn people for trying to uncover a link to autism, just the same as we can't uphold them for misleading the public and creating distrust and doubt.

I do believe in vaccinating. I do not want to return to a world where diseases take the lives or cause suffering for children. But we need to be educated about vaccines and make the most educated decisions on behalf of our children.

Living With Special Needs article

2011-01-05T12:32:00.001-08:00

Here is an article I wrote for Living With Special Needs.com.

Acceptance of a Diagnosis

Harpo Marx

2011-01-03T18:40:00.000-08:00

New Year's Eve brings many traditions. Champagne at midnight. The ball dropping in Times Square. Kissing a loved one when the clock strikes twelve. And one of my favorites, a Marx Brothers marathon on TV. I remember watching the Marx Brothers with my grandmother on New Year's Eve, while my parents were out at dinner. I loved Groucho's double entendre and play with words. I loved the broad, physical comedy and outrageous antics. I remember watching A think Night at the Opera was my favorite - but I loved Room Service and Animal Crackers, too.

Charlie and I did not go out on New Year's Eve -- no babysitters were available and we were tired from Ava's night wakings. So we stayed in with Ava and scrolled through the channels until I stumbled across a Marx Brothers marathon. Eureka!

It occurred to me that Harpo Marx and Ava are a lot alike. Harpo does not talk -- although I think he uttered a few words and squeaks. He mainly communicated through music - the harp - and sight gags. Ava is funny, like Harpo and loves to make people laugh. And she connects with people mostly through music and gesturing. I wonder if Harpo was on the spectrum.

I guess that makes me Chico. Harpo's main line of communication. And on that note...

Hello, I must be going,
I cannot stay, I came to say, I must be going.
I’m glad I came, but just the same I must be going.
La La.

Holiday Greetings!

2010-12-26T19:22:00.000-08:00

Wishing everyone a happy holiday season!

Announcement and Holiday Photos

2010-12-13T19:30:00.000-08:00

I have decided to write another blog. It is currently not live, but will be after January 1st. All About Ava will be exactly that -- all about Ava. My new blog will feature essays about autism, advocacy issues and product reviews, etc. It will not be about Ava, but about being a mom to a special needs child.

Will give the web address next week!

So stay tuned. In the meantime, enjoy some holiday photos of our precious Ava Jolie.

IEP Update and Future Plans!

2010-12-13T19:27:00.000-08:00

Our IEP meeting went - well, it went. There was no decision made as far as placement. But we did agree that Ava needs 1:1, a full day of ABA program, extended-year programming and transportation. We also agreed that the in-district program was not appropriate.

Now we must find a program. So we are looking. We see a public program out of district tomorrow.

We agreed to have another meeting to determine placement. All that worrying, just to schedule another meeting. It's OK though, we all seem to be on the same page.

------------

Tomorrow is D-day

2010-12-09T19:13:00.000-08:00

Tomorrow is D-day. Our IEP meeting. The school district will tell us Ava's fate. They will outline an educational plan (the IEP) and give us an idea of where will best implement this plan.

I am nervous. Thankfully, my husband will be with me.

I know the meeting is going to be upsetting - they go over reports and tell us about Ava's deficits. I've seen the reports already. But it will be hard to hear it from nine school district representatives.

But I've baked a pumpkin bread - which will hopefully make them see things our way.

Will keep you posted.

Being Thankful

2010-11-29T15:41:00.000-08:00

It is a few days after Thanksgiving Day.

And I am grateful.

Of course I am grateful for my family, my friends, my health. And my husband, my beautiful daughter and having food on the table and a roof over our head.

I am also grateful for those who give their hearts, souls and lives to educate, treat and assist children with special needs. What if there were no therapists to help my daughter? What if there were no schools for her? What if she did not have access to services and we had no access to knowledge about her disorder?

I cannot imagine how the quality of her life would be. I would be afraid of the future if it weren't for the people in my life dedicated to children with special needs. In years past, Ava would be in an institution with her disorder. We now know that autistic people are valuable to society and can lead productive lives.

So a few days after the turkey and stuffing, I am filled with much gratitude for the people who give and provide for children who are disabled. Thank you for my daughter's livelihood.

Approaching the IEP

2010-11-22T19:33:00.000-08:00

Ava is aging out soon. For those of you not in the special needs world, it means that she will be turning three and transitioning from early intervention into the school district. The district will be responsible for her services - and hopefully providing her what she needs.

It is no easy task to get your child an appropriate education. And it is more than that. Ava is still young. Her brain is still forming. She still has the potential to recover from autism - at least, to be functional in normal society and have the necessary life skills to be independent. Her education IS her treatment. I can give her so much at home. But I am not a professional. Neither is my husband. Autism requires skilled practitioners.

Can you imagine having a child with a horrible disorder - and his/her chance for a normal, functioning life hinges on the quality of the education he/she will get? And I don't just mean being able to read or write -- I mean being able to walk down the street and not wander into traffic. I mean being able to go to the toilet unassisted. I mean having the basic skills to take care of oneself. Her placement into the most appropriate program is critical. Her livelihood depends on it.

So now we enter the arena of the Individualized Education Plan, the document which will outline Ava's goals in her education. Her goals have to address her needs, in order to prepare her to mainstream into a classroom with typical peers. Hopefully, that transition will transpire.

But it all comes down to dollars and cents. School districts do not want to spend the money to education an autistic child in a specialized program. They want to generalize. All the special needs children in one classroom, with a few special sessions thrown in.

I can't gamble with Ava's livelihood. I need to get her what she needs to become a functioning adult. And I will.

Da-da-da-di Ta Ta Yeee Yeee Hah!

2010-11-12T19:17:00.000-08:00

Ava loves the library. And she has a new song composition she wrote herself.

Da-da-da-di Ta Ta Yeeee Yeee Hah!

Ava is a Bumble Bee!

2010-11-05T18:21:00.000-07:00

Ava is a bumble bee - buzzing around the yard!

What do you love most about your child?

2010-11-04T19:32:00.000-07:00

In the special needs blog hop, the question is:

What do you love most about your child?

My daughter is a pure heart. She is joyous, loving and endearing. She is a happy child. She is full of love and expresses it freely. This is not a typical autism trait - and it gives me hope that she will one day be able to communicate and share with typical peers.

She inspires me.

Improvement -- well, kinda

2010-11-03T18:47:00.000-07:00

We visited Ava's developmental pediatrician yesterday for a report on Ava's progress. They did a few standardized tests to gauge Ava's improvement and outline her skill set. She was observed by a psychologist and tested on many skills. The results were encouraging. However, it is very clear that Ava needs an intense program and has a long way to go.

She improved in every area: language, fine motor, gross motor and social skills. Her play skills improved dramatically. It is obvious her therapy programs are working and her therapists are doing a great job.

It is disturbing that Ava's receptive language is at the level of a six month-old infant. She previously scored as a four month-old. Yes, it is improvement, but no where near where she should be. It is extremely low.

Although we are happy with Ava's progress, she is the hardest working 2 year-old I know, we are scared that she is no where near the skills of a typical child. Ava is sweet, funny, loving and easy-going. But she cannot communicate or understand most of what is going on around her. She needs a lot more therapy - good therapy.

And with that, we embark on our journey to get Ava into a pre-school program that will address her needs, so that someday she will be able to be in a classroom with typical peers. So that someday she will graduate high school, learn to tie her shoe, go to the bathroom, eat with utensils and turn her head when her name is called. Ava's doctor gave us advice what Ava requires. We do not want her to end up in a group home. We want her to go to college, have friends and have a job when she is an adult.

And all that hinges on the decisions that will be made for her in the next few months.

Autism on Autism Violence

2010-10-31T14:26:00.000-07:00

Ava is not an aggressive child at all. She is quite the opposite. She has never hit anyone or anything. She never really pushes anything away with force. She is a very affectionate child with a calm, tranquil demeanor. If she is upset, she cries. She does not tantrum or act uncontrollably. I am thankful for that and hope she retains her easy-going disposition.

There are many challenging behaviors associated with autism. I know of children on the spectrum who are aggressive -- mostly self-injurious, who bang their heads against the floor or walls, hit themselves, spit, scream or throw things. I read that sometimes autistic children hit others because hitting feels good to them because they have a sensory disorder. Just like elderly patients in nursing homes can be violent, so can autistic children. These behaviors are so dangerous - and so stressful on caregivers, parents, siblings and educators.

Last week we took Ava for a follow-up visit at her developmental pediatrician's office. There is an autism school/therapy center in the same building as her doctor's office. While we were getting ready to leave in the lobby, an 11 year old boy was being led through the front door and through the lobby by his aide. He was a big kid, about 5 feet tall and large-framed. He had a baby face with welts and bruises all over his face. I guessed it was from self-injurious behavior. The aide said to him, "Let's put our hands in our pockets." And they started to pass us. Ava was in the stroller and I was pushing her while Charlie settled our bill. The boy started to walk past us but then eyed Ava, screamed and lunged for her. He broke through the aide's grip, grabbed Ava's head with both hands and tried to pull her out of the stroller by her hair. Ava was shocked and did not cry, she looked up at me trembling with fear. She whimpered as I peeled his fingers off her scalp and my husband and my mother pulled him off of Ava. He finally released his grip and the aide whisked him away.

We stood there in the lobby and no one said or did anything for us. Ava was whimpering, but within two minutes, she was herself again. A parent of one of the school kids came up to me and asked, "Is she OK?" I nodded and she added, "Oh, I thought you knew him. Everyone knows to stay back when he walks down the hall." I explained that I was visiting today and I did not know him. I wished SOMEONE had warned us so that my daughter was not attacked. I looked down at Ava, who was bruised and had a small cut on her forehead. I almost lost it.

The office assistant walked over to us and told us to stay so the doctor could examine Ava's injuries. I knew Ava was not hurt, but I wanted her doctor to see what happened. I think I needed medical assistance. It was so hard for me to see this poor boy abuse my daughter. I did not blame him or his condition, but it was so unfortunate and unnecessary that my daughter was in harm's way.

This, of course, concerns us when she is to go to school. Will there be other children there who are aggressive? Will the staff be trained enough to deal with those behaviors? How do we protect our child - and be respectful of the rights of others?

My heart goes out to the family of that boy who attacked my daughter. I am sure life is not easy for him or for them. This aggression is not pre-meditated or purposeful, it is all a part of the disorder.

One Year of Living With an Autism Diagnosis

2010-10-28T19:19:00.000-07:00

A year ago today, Ava was diagnosed with autism. We took her to a developmental pediatrician who broke the news to us after examining Ava for about an hour. I remember her saying:

"Ava is on the autism spectrum. I have no crystal ball. I can't tell you if she will get married, go to college or have a job. We just have to see what happens."

It's a year later. Ava has made progress. But she still has significant developmental delays and has been given an autism, apraxia, sensory and auditory processing disorder diagnosis, not just a spectrum diagnosis. A year ago, she did nothing but babble but now she labels a few objects. She is still considered non-verbal and does not call my name. She has great imaginative play skills. She does some imitation as well. But she still does not turn her head when I call her name, follow directions or make consistent eye contact. She has learned to read, spell and match beyond a 2 year-old level. And occasionally, she will say, "I YOVE YOU!"

Progress is slow. It is hard not to get discouraged. Will she always be like this? Will she ever learn to go to the potty by herself or at least not be supervised 100% of the day? Will she have friends? Will she play with other children? Will she be bullied or made fun of in school? Will she ever be in school with typically developing children? Will she be in Brownies, soccer or marching band? Will I watch her walk up to the podium to accept her diploma without an aide?

Not having a crystal ball makes dreaming of the future a waste of time. Should I fantasize about Ava going to Harvard? Or perhaps getting into a REALLY good state-funded group home? I don't bother discussing the common pursuits with moms of typical children - "Which preschool should I chose?", "How long should her nap be?", "When is a good time for a play date?" All I know is that those questions do not pertain to my child. Ava is in therapy all day long and I am left out of some of the joys of parenting. I scrapped my subscription to Parents Magazine because 99% of the articles are for typical children only - "Stopping Tantrums", "Sleep Training Tips", "Potty Training in 1 Day", "Even Your Toddler Can Habla Espanol"...

A year of living with an autism diagnosis has taught me a great deal. I know that in order for a child to improve, you have to fight for services tooth and nail. You have to line up your ducks perfectly and hope for the stars to be aligned to get your child into a program at the age of three that will suit his/her needs. If you do not, your child faces regression and may not acquire the skills to be a productive member of society. There are not enough therapists, educators or administrators equipped to handle the growing burden of autism. The professionals committed to helping the autistic population can be excellent or terrible at their jobs. But for the most part, we have encountered people who are truly caring and give their heart and souls to their profession.

I've also learned that people can be pretty mean, cruel and ignorant when it comes to autism. People can also be compassionate, generous and understanding beyond anything I would have expected. Autism is baffling - and it's invasion into one's life can be isolating and bonding at the same time. I've had friends and family members retreat from our lives, and I've had others join with us and extend their hands to help. I've met other parents with autistic children and shared their joys and their heartaches.

Having autism in our lives 24 hours a day for 365 days has taught me more about the disorder than I would ever expect to learn. I feel like I have earned a doctorate in advocacy, applied behavioral analysis and scientific research. Every day I read about studies concerning autism causes and treatment. I read blogs written by other parents of autistic children. My entire life is autism. I never get a chance to come up for air and know what it is like not to have autism in my life. I spend hours every day, writing emails, making phone calls, attending lectures - all about autism and getting Ava what she needs to be a happy, functioning member of society.

Autism has forced me to enjoy little milestones. When Ava said "cracker" for the first time in Trader Joe's last summer, I almost fell on the floor. Ava kisses and hugs her Bunny, her favorite toy, which shows she can express emotion and feeling. If Ava does not cry when her therapist comes in the room, I am overjoyed. I realize I have to look at the small successes rather than the big picture. I see the beauty and miracle in the small steps.

I hope the next year brings more progress for Ava. I hope I learn even more. I hope to see others more educated and compassionate concerning autism. I hope next year is a good year for Ava.

Autism NJ Annual Conference 2010

2010-10-22T20:13:00.000-07:00

Autism New Jersey’s Annual Conference is one of the nation’s largest autism-related conferences, drawing record crowds of parents and professionals.

I had the pleasure of driving by myself down to Atlantic City for Autism New Jersey's conference. It was 4 blissful hours in the car, listening to the radio and returning phone calls. It was the first time I left my daughter alone with my parents and my husband since she was an infant. I left with pangs of guilt in my heart, but graciously surrendered to the solitude of my car. I could go to sleep by myself and wake up on my own - YIPPEEE!

New Jersey, as a state, is quite progressive when it comes to autism. I should say, progressive when compared to most states. We have the highest autism rate in the country - 1 in 94 children. We are one of the states to have an autism insurance mandate. Although flawed with legal loopholes in favor of the insurance companies, it is a step in the right direction.

New Jersey has some of the best autism services in the country, however, the demand is now more than the supply. We have great therapists and teachers, but we need more. With the state education budget drastically cut (as well as Early Intervention funds), meeting the needs of the autistic community is challenging. And unfortunately, the state government does not share the parents' and educators' views that autism is an epidemic burdening our schools. But families still move to New Jersey for autism services - because our state is more progressive than most.

At the conference were many professionals, some getting credits toward their BCBA (Board Certified Behavioral Analyst). Some were educators sent by their districts to learn more. And some were teachers who saw the need to learn about autism. Some of the workshop offerings included: Early Intervention Services, Healthcare Advocacy Across the Lifespan, Feeding Issues, Teaching Independence, Challenging Behaviors, etc. There was a full day dedicated to autism in business - how to integrate individuals with autism in the workplace and also how to make businesses more sensitive to the needs of people on the spectrum.

I went as a parent-advocate. My daughter is only 2 and was diagnosed at 19 months. I want to learn about all the issues my daughter will face. I want to learn my new responsibilities as a parent of a child with special needs. I read all the parenting books and still have subscriptions to all the magazines. I've had to ditch them all because they do not pertain to my daughter. It seems my job description has changed and I need further education to do my job better.

I went as a volunteer - which I advise every parent to do. I attended the conference for free and assisted the staff. I checked attendees into lectures and passed out stamps for the educators to redeem for credits. I attended three lectures - one on special needs planning (trusts, wills, etc.), one on the Department of Development Disabilities and one on creating an Individualized Education Plan (IEP). I wish I was able to attend all three days of the conference. I learned more in a day than I ever expected!

Did you know that the Department of Disabilities has a waiting list at least 13 years long - and it is predicted that children my daughter's age may have to wait a lifetime for assistance? I didn't! I did not realize that I have to prepare now for my daughter's adulthood. After the age of 21, she is longer given services by the school district. She is without housing, job placement, medical care and services unless I get her on the proper waiting lists now and hope there are services by the time she turns 21. I hope my daughter will not need services. I hope she fully recovers from autism. But the chances are slim - we have to be honest with ourselves and prepare for the future now.

I also learned how to write an effective IEP - and to be gracious of the professionals willing to educate and fight for special needs children. I learned that my husband and I need to create a will and a special needs trust for our daughter. As I said, when you have a special needs child, you need to educate yourself to do your job better. I met many parents, mostly of older and adult children, who have pioneered the way for parents like me. I met a parent who drove his child an hour and a half every day to Princeton so his child could attend PCDI, one of the top autism schools in the country. He and his wife were an inspiration - the epitome of warrior parents, working so hard to get their child the services and education he needed. As a result, their son is doing very well now in an adult group home.

There were so many informative sessions at this conference - but it seemed lonely. I wanted more people to be there especially people with typical children. I wanted them to see what I, and the many other parents with autistic children, must to go through. I wanted them to meet a set of twin teenage boys, both on the spectrum, who are now marathon runners. They are virtually non-verbal, but excel at running. They both run with aides/coaches, who have a hard time keeping up with them. They have been embraced by the running community. It was so exciting to see these boys and know they are leading happy, fulfilling lives. I want people to meet the teachers who pay to come down to the conference out of their own pockets to learn about how to better serve their autistic students. I wanted all the people who think autism is a hoax or a drain on taxpayer dollars to see how hard we are working to create a better, more accepting world for individuals on the spectrum.

Please contact Autism NJ at 800-4-AUTISM or www.autismnj.org to become a member and learn more about their valuable work.

One Day on Earth

2010-10-19T20:49:00.000-07:00

I participated in One Day on Earth 10.10.10. to raise awareness for autism.

Ava at the Park from KIM CRISTO on Vimeo.

Making Progress

2010-10-10T19:37:00.000-07:00

Ava has had some astounding and encouraging progress.

Ava has been saying a lot of words. In speech therapy today, she said:

ball
cat
giraffe
animals
baby
cow
"baa" - as in sheep
sheep
moo
eat
donkey

Her pretend play and creative play has improved vastly. She plays with her baby dolls and feeds them, covers them and kisses them. She plays with her bunny, her best friend, making him draw and color with crayons, eat her snacks and run in the leaves.

She can label things. If she sees a car, she says, "car". She calls anything round a "ball-ball" She calls her grapes she eats for breakfast, "ball ball". She calls balloons "ball ball". She calls apples "bapples".

Ava gets a little obsessed over things. She will play a video clip over and over and make me sing with it. When I stop, she cries. But she wants my participation, which I think is engaging, but after imitating the baby chick on her Curious Buddies DVD for the 25th time in a row, it is a bit exhausting.

She does not stim as much. Her sensory issues have diminished to the point where they do not get in the way of her learning. She can sit in her therapy chair for about 45 minutes, which is amazing for a 2 year old.

These are small steps. But all of this is encouraging.

She's No Angle

2010-09-28T20:53:00.000-07:00

When I was in my 20s, I did a regional theatre production at Alabama Shakespeare in Montgomery, Alabama of Diary of Anne Frank, one of my favorite plays based on one of my favorite books by a young woman I so admired. It was a landmark production because it was the first time this play was performed in this area of the South. Our play was geared towards children and this was important. Most children attending performances had never met anyone of the Jewish faith and some were taught that the Holocaust was a hoax. We had educational programs attached to our production to try to integrate tolerance, acceptance and understanding. We did the production to show the humanity of the play and how it transcends hateful and ignorant teachings.

I think about those who suffered immeasurably in the Holocaust, those whose families were completely annihilated and those who survived the unimaginable and how they all must feel when they hear the hateful rhetoric of people who call the Holocaust a hoax. I would think survivors and their kin would be filled with rage -- how can people be so cruel, insensitive and stupid? Or perhaps they are extremely sad knowing that the human race has not learned any lesson and the threat of genocide is still ripe? Denial of the Holocaust is degrading and insulting - meant to demean the souls who endured and torture their loved ones who were spared. Denial of the Holocaust shows ignorance at its purest form.

There are people who deny that autism is real. A conservative talk show host called autism a "hoax". There are people who believe that autism is just an excuse to get services from the state. There are people who think that autism is over-diagnosed and kids are "just brats who do not want to listen".

A few days ago I read a news story about Sharron Angle, GOP candidate for Senate in 2010 in Nevada. At a Tea Party convention in 2009, Sharron Angle said, "Everything that they want to throw at us now is covered under (using air quotes) autism, so that's a mandate that you have to pay for." The air quotes suggested that she thought autism was fabricated or not real - a hoax, a rouse to get money from the state or insurance company.

She recently defended her statement by saying "expensive government mandates falsely label other symptoms as autism because it creates this huge cottage industry that drives up health insurance cost while diluting the needed coverage for those patients affected by autism."

I find Ms. Angle's comments to be uneducated, ignorant and callous. Yes, autism treatment is expensive. But it is not a cottage industry. Autism is an epidemic. 1 in 110 children in the United States have autism. And if Ms. Angle had a child on the autism spectrum, she would see the need for a mandate for insurance coverage.

If Ms. Angle knew ANYTHING about autism, she would know it is a spectrum of symptoms. It is a pervasive neurological disorder. No one is faking it to milk the system of services. No one is falsely diagnosing children to create a cottage industry. Autism is a real disorder which is so mysterious and puzzling, that we do not know what causes it and we do not have a cure. But what is known is that autism must be treated aggressively, just as you would treat a traumatic injury or life-threatening disease like cancer. If we do not treat autism aggressively, a child can grow up to be an adult who cannot function in society, cannot relate to anyone or anything and who may have severe behaviors which cause serious injury.

A Nevada constituent with a daughter on the spectrum, a once die-hard member of the GOP, jumped ship and is now voting for Senator Harry Reid, the Democratic incumbent. He was so infuriated by the callousness of Sharron Angle's comments, that he switched parties and is encouraging others with children on the spectrum to do so as well. It's not about voting "Republican" or "Democrat" or "Tea Party". It's about upholding what is important to you. It must break his heart, as it does mine, to hear anyone deny that autism is fabricated or the reason that insurance rates are so high. As parents we know that this rhetoric hurts our children and their chances to be accepted in today's society. It is hard enough to see and hear the world differently than everyone else, but to be shunned like a pariah, adds insult to injury.

And if Sharron Angle is so concerned about not spending her precious money -- ACCEPTANCE AND UNDERSTANDING ARE FREE! It costs the taxpayers - and her - nothing.

http://craigbender.wordpress.com/2010/09/24/airquotethis/

Bunny

2010-09-28T19:41:00.000-07:00

Ava has a favorite toy.

Bunny

Bunny has emerged as Ava's best friend and partner in crime. Bunny sleeps with her and is the first thing she grabs in the morning. Bunny plays with her all day. Bunny sometimes plays the iPhone games with her. Bunny has been known to eat Ava's leftovers. Ava sometimes chews her food and then remembers Bunny is hungry and gives it to Bunny. Bunny gets a lot of baths in the washer while Ava is asleep.

Ava hugs Bunny and says, "Bunny, I ya you!" (Bunny, I love you.) Bunny gets kisses too. Bunny also wakes up with Ava in the middle of the night and accompanies her to Mommy and Daddy's bed.

It is nice to see Ava so attached to a toy. She has always loved her toys equally, but seeing her get attached and show emotion to her favorite is quite moving.

One Year Ago...

2010-09-22T20:13:00.000-07:00

It was one year ago that Ava entered Early Intervention in NJ. She has come very far and done so much work. I am very proud of her.

Here is a video of one of her first sessions with her first team leader. She was only 19 months old at the time. Now she says lots of words, mostly echoic, but she is starting to label objects. The second video is a few months later, where she first learned to point. Ava is no where near the classification of "verbal", but she has grown so much.

I LOVE YOU!

2010-09-22T19:48:00.000-07:00

Yes, Ava says "I Love You". And she means it.

It actually comes out "I YA YOU!" But I'll take it. She started saying it last week and now says it to me when I cuddle her and when she wants me and only me. Today she said "I YA YOU" when her OT was making her roll on the stability ball. She hates that.

Last week we went to see my mother in law in Brooklyn. Ava had a great time. My mother in law has an old cat, who runs under the bed any time a child enters the house. However, when Ava comes over, the cat comes out and is not afraid of her. Ava won't touch the cat, but always wants to be near him.

When Ava saw the cat she ran to him and said, "I YA YOU! I YA YOU! I YA YOU!" The cat did not respond, so Ava said, "Meow meow meow!"

It was so cute.

Ava wandering

The Stress of Autism

2010-09-07T20:08:00.000-07:00

I recently read an article that compared the stress a combat soldier experiences to the stress of a parent of an autistic child. In no way are the two situations or experiences the same, the study compared the stress levels and the effects on the body.

Autism Moms Have Stress Similar to Combat Soldiers

We are stressed. I know I am complaining, but this was not a fun summer. Therapy, illnesses, sleep deprivation, moving and no break from our routine. Our life is not so bad, and I wouldn't trade it for the world, but sometimes the stress of a special needs child gets to me. I have a lot of support, and get a lot of support but still, it is overwhelming.

My husband and I rarely get sick, but we've been sick twice in the past month. I had bronchitis and he was sick over a week with a bad chest cold. He gets no sleep due to Ava's night wakings and he has to go to work in the morning. He works late hours. We don't get any time together.

I am exhausted - taking care of Ava, cooking, cleaning and scheduling. I sometimes have no time to go to the bathroom. I forget to brush my teeth. What is most disturbing - my hair is falling out. There is a huge clump of hair in my shower drain every morning. I don't touch my hair to style it because I will end up in my hands. I take vitamins, when I remember, but I know stress makes my hair fall out.

Life is all about balance. Right now, we have no balance. It is all work, therapy and duties. Poor Ava barely gets time to play - and Mommy and Daddy do not have any time to relax. Once she is in school, in January, things should get better I suppose.

But nothing can take away the worry. What is going to happen to my child? Will she ever talk? Will she ever be able to go to the toilet? Will she ever be able to take care of herself? I am working day and night to point her in that direction, but still there are no guarantees, no crystal ball. If only something would take the worry away -- give me security that everything will be OK with my sweet girl.

NY Times: Child’s Ordeal Shows Risks of Psychosis Drugs for Young

2010-09-07T19:53:00.000-07:00

This article truly scares me. My 2 1/2 year old daughter is on an anti-depressant for sleep - after trying 4 other drugs which did not work.

I have no idea what the long-term effects are because there are no studies done on a child this young. I can only gamble -- and hope, someday she does not need medication.

http://www.nytimes.com/2010/09/02/business/02kids.html

Destination: Mall

2010-09-06T18:37:00.000-07:00

One of Ava's favorite places on earth is the Riverside Square Park mall in Hackensack, NJ. On a Sunday - when the stores are closed. We have blue laws in Bergen County, which are so antiquated and silly - but the stores are closed. The mall, however, is open on Sunday because the Barnes & Noble is allowed to be open.

So almost ever Sunday we take Ava to Barnes and Noble to play with toys and look at books in the children's section. We then go to the mall so she can run around without a crowd. She loves the sound of her voice in the empty halls. She loves to run on the marble floors and look in the windows of the empty stores. I don't worry about losing her in a crowd. We get some exercise too.

Ava does not do well in crowds. She gets overstimulated by the noise. She gets overwhelmed by too many people. She does not cry in those environments, she shuts down.

So an empty mall would be boring to some people. To Ava, it is paradise. A free space to run.

Ava is a Superstar! See her with Dr. Jay Adlersberg on ABC-TV NY News!

2010-08-23T17:31:00.000-07:00

Ava and I taped a segment on the needs of autistic individuals and Autism NJ's Blueprint for Services Across the Lifespan...

She looks SO adorable and even did a high-five and signed "candy" for the camera!

Off topic: Yo Gabba Gabba Giveaway!

2010-08-23T07:46:00.000-07:00

Yo Gabba Gabba Giveaway - courtesy of Blommi!

Here is a link to a Yo Gabba Gabba giveaway! One winner will receive a Yo Gabba Gabba! prize pack consisting of a Yo Gabba Gabba!: Music is Awesome Volume 1 CD featuring songs from the Roots, Shins and others (volume 2 is not included, but is releasing soon) and a copy of the recently released Yo Gabba Gabba! Clubhouse DVD, with performances by musical guests Erykah Badu, The Killers, Jimmy Eat World and more.

Yo Gabba Gabba Giveaway!

Vaccines and NJ

2010-08-22T13:08:00.000-07:00

To be quite honest, I do not know where I stand on vaccines so please NO ARGUMENTS. I think we all need to be better educated about them. I think children get TOO many vaccines early in life.

I am not sure if vaccines caused Ava's autism. I know she regressed shortly after her MMR vaccine. I wish I knew the connection - for a peace of mind and a baseline for treatment.

But, I ask this...in response to this article on the rate of vaccinations and the fact that NJ has the HIGHEST autism rate in the United States, what IS the connection? Shouldn't we have the highest vaccination rate? Or the lowest autism rate?

I know parents of autistic children and adults usually fall into one camp or another -- but for those of us who are unsure, what is the connection? Some people want to canonize Dr. Wakefield (the doctor who conducted a vaccine-autism link study) and some people think he is a quack who got his just desserts (his medical license was revoked and his study was proven flawed). I fall into neither. I just want to know.

http://www.nj.com/news/index.ssf/2010/08/growing_resistance_to_vaccines.html

Negativity

2010-08-22T12:49:00.000-07:00

Positivity is a challenge we must face every day no matter who you are. It is even more difficult to deal with someone else's negativity. Misery does not love company - misery creates company.

We all have negative people in our lives -- people who always see a glass half empty. People who live under a dark cloud and wallow in it. People who are filled with reproach. People who hold smoldering grudges or cannot be happy for anyone else because of his or her own misery. Sometimes we can brush off their antipathy and sometimes it breeds acrimony in us.

When my husband and I were met with extreme difficulty when trying to start our family, pregnant women and families made me sad - and resentful. I would cry when I heard of yet another friend having a baby or finalizing an adoption. I was happy for them, but angry I could not experience the same joy. I skipped some baby showers. I did not go to events where there were lots of families and kids. We went to "couples only" resorts. But I really did not let anyone else know my pain.

And now, steeped in autism treatments and the limitations and struggles in my life, I sometimes feel that same sense of sadness and envy creeping back. It would be easy for me to turn into a "Bitter Betty". I look at Facebook and see posts from friends, "Enjoying our summer vacation in Spain" when I am stuck in the house with Ava's therapy day after day. Or "my baby is graduating fifth grade and going to middle school!" when Ava may never go to a mainstream school or ever "graduate". Or "my little angel was just accepted to Dartmouth!" when I wonder if Ava will ever go to college. I long sometimes for a "typical" kid -- a child I can explain things to and she can understand like, "Let's have dinner now." But I try my hardest, not to curtail someone's joy. I try my best to accept other people's accomplishments and maintain my sense of hope. And I never, ever resent any child. I just cannot go there.

But how does one maintain optimism when the statistics are bleak and the obstacles seem plentiful? When I feel sorry for myself, I ask "What is the point of negativity?". We all have a journey we must endure. When you look at some people, their successes seem simple and they appear to have luck on their side. Optimism breeds luck and happiness. Negativity attracts unhappiness. Why waste my energy on a negative thought? It only puts me deeper into a hole I from which I cannot escape.

So I choose to maintain hope - but I do struggle with the bitterness trap every day. Some days are a cinch to be happy - and other days I want to wallow in my own self-pity and chalk Ava up for "lost cause". I have to look to people who inspire me - friends and family who face horrible tragedy or challenges, friends of other special needs children who seem unflappable and eternally loving and positive and those who are positive in their outlook. I find strength and encouragement in simple pleasures - like a day without crying or a good night's sleep. And finally, realizing I am alive is a ray of sunshine.

Ava's Schedule

2010-08-22T05:07:00.000-07:00

Mandy of Mommy Musings wrote a great post about her daughter's schedule. As a mom with horrible ADD, a schedule is my nemesis. Throw in Ava's sleep disorder and therapy all day long, each day is a struggle. Looking at others' schedules had made me realize why I am so tired, disorganized and feeling trapped. I need to get organized! Here is a glimpse of a typical day for Ava.

5am - 9am - Ava wakes based on her sleep, or lack thereof, from the night before. She is happy as a lark if she wakes up on her own. If I have to wake her, she is cranky and the day is not a lot of fun.

7am - 9:30 - Mommy makes breakfast of fruit, cheese and yogurt drink which Ava eats while she plays with toys and Mommy dresses her. Sometimes we put the TV on, unless she is overstimulated and does not want tv. She does not eat in her high chair for this meal - my big mistake. Daddy and Grandma leave for work. Grandpa goes into his office.

9:30 - Therapist arrives for therapy session #1

9:30 - 11:30 - therapy while Mommy showers, eats breakfast, checks email, does paperwork, etc.

11:30 - 12:00 Ava gets a break while Mommy makes her lunch and signs paperwork for therapist

12:00 - lunch of mac n cheese, broccoli, baked french fries, turkey or tofu and fruit. Ava eats in high chair and sometimes will watch tv.

12:30 - 2:00 - Ava has therapy with therapist #2 while Mommy cleans up lunch, eats lunch herself, makes lunch for Grandpa, cleans house.

2:00 - 3:00 Ava gets a break to go outside, play with toys. Sometimes Mommy takes her to the supermarket or runs an errand.

3:00 - 5:00 Therapist #3 - usually a tough session because Ava is bored and tired. Mommy prepares Ava dinner and participates in therapy for part of session. If she has Occupational Therapy, it is an hour of screaming.

5:00 Ava's dinner of mac n cheese or broccoli littles, chicken sausage, green beans, olives, cheese and tortilla. I can vary the menu a little, but her sensory issues make certain foods more desirable for her. She is a good eater, luckily.

6:00 Ava plays with toys while Mommy makes dinner for adults. Grandma comes home.

7:00 - Adults eat dinner when Daddy gets home. Ava plays with toys and sometimes watches tv: Yo Gabba Gabba, Baby Einstein or Elmo.

7:30 - Ava has bath time - given by Grandma -- while Mommy cleans up. Mommy is ready to pass out at this point.

8:00 - Ava has a bottle of milk (shouldn't be drinking bottle, oh well) and plays with random adult in household or her toys. Mommy has to do reading, advocacy work and talk to Daddy during this time.

9:00 - Ava's bedtime, sometimes. Can be as late as 11:30pm if Ava napped during the day. Daddy watches tv. Mommy is usually on the internet to get some writing done.

11:30 - Mommy and Daddy's bedtime.

9:00pm - 2am -Ava usually sleeps

2am - Ava generally wakes up, plays in her crib, sings, laughs and "stims" for several hours. She tries to get back to sleep but can't because she is filled with manic energy. When she gets really exhausted she calls for Mommy or Daddy. We bring her in bed and try to settle her down. She falls asleep anywhere from 5am - 6am and sleeps until 9am.

However there are times she sleeps through the night, which are GLORIOUS.

There are no playdates. There is no time for the park or pool. Sometimes a therapist will take her to the park with me or put her in the baby pool. We don't socialize in general because there is no time. I wish Ava could have more fun, but this therapy is so important now. Hopefully she will play, take classes and have fun later in life.

She's a Wanderer

2010-08-18T18:34:00.000-07:00

Check my heart rate, please. It's been a tough week.

Well first, I had a near breakdown this week at the neurologist's office. Ava'a sleep has been awful. I have bronchitis which I am trying to kick. Ava was sick last week as was her dad. None of us sleep. She will wake around 2am and stay awake until 6am. Then, she wants to go back to sleep and wake up around 10 or 11 am. But therapy prevents her from doing that. So she is a cranky zombie all day. Sometimes she crashes at 4pm and wants to sleep until 7pm. But then she is up until midnight. It is an endless cycle of weariness, fatigue and confusion.

So the neurologist suggested a new medication, an anti-depressant used for sleep issues that has few side effects, but is not recommended for those with heart issues. Ava has to have an EKG before she takes this medication. I have a friend, an adult male who on this medication and he said it works well. However, the neurologist said it is not generally used on young children and he has NEVER given this to a child this young.

The alternatives are to let her crazy sleep patterns continue, wreaking havoc on our lives and health -- or go the anti-psychotic route, like Risperdal. The side effects of Risperdal are:

Tardive Dyskinesia

Risperdal may cause tardive dyskinesia, a disorder resulting in twitching and involuntary muscle spasms in the face and body. Tardive dyskinesia often is permanent. Although the effect is rare and occurs more in older women, it has been documented in children as well.

Neuroleptic Malignant Syndrome

Neuroleptic malignant syndrome is another condition associated with Risperdal use. This severe disorder is characterized by muscle stiffness or rigidity, high fever, rapid or irregular heartbeat, increased perspiration and confusion.

Symptom Masking

Risperdal can hide symptoms of certain illnesses, allowing them to progress and worsen. These include brain tumors, intestinal obstruction and Reye's syndrome. Reye's syndrome is a sometimes-fatal condition that most commonly develops in children after a viral infection (and is also associated with aspirin use).

High Blood Sugar

Young children taking Risperdal may develop high blood sugar. Signs include unusual thirst, increased urination and fatigue. Risperdal use also is associated with weight gain, a risk factor for diabetes.

Other Side Effects

Risperdal can many other side effects in children, including agitation, anxiety, restlessness, constipation, indigestion, nausea, vomiting, dizziness, sleeping problems, rapid or irregular heartbeat and greater sensitivity to temperature extremes.

So that's a big NO for Risperdal. Thus, we are trying the anti-depressant after a visit to the pediatric cardiologist for an EKG.

So on my way home I had a near breakdown. I wish I didn't have to deal with this! WHY does my daughter have to be put in this position? As other moms are worried about sending their kid to nursery school 2 days a week, and spending too much money on school supplies, I am worried that the medication I give my daughter may harm her for the rest of her life. I know it is selfish and things can be a lot worse -- but it's MY child. I don't want her to suffer. I see her get frustrated in the middle of the night when she tries to go to sleep and can't stop herself from stimming even though she is so tired. Why my little girl? How will the decision I make now affect her health for the rest of her life?

And then, one of my worst fears materialized.

Ava went to sleep at 11:40 pm last night. She woke up at 3am. She was up until 6:30am, I think. She slept until 10:45am. I got very little sleep - as did my husband. Ava and I stopped at the local children's shoe store after our class, which was having a big sale today. When I walked in, the door was wide open because they wanted to get some foot traffic in the door. They were having a cockamamie promotion where you could win a TV if you bought shoes, participated in a trivia contest, blah blah blah. The store manager was at the front making people sign in and guarding the prizes. I had to sign a form when I walked in the door, holding on to Ava at the same time. After Ava was fit for shoes, the salesman asked me a question and I turned away from Ava to answer. Ava got down from her seat and ran out the door in front of the store manager who was busy guarding the prizes for the promotion. My eyes were away from her for 90 seconds. Within that time, she ran out the door, across the street and into the parking lot of the supermarket. She was stopped by a woman who had just gotten out of her car. Luckily another car saw Ava dart out and stopped. I looked down, noticed Ava was gone and ran out of the store in a panic. The woman who caught Ava said, "She just ran out in the middle of the street." I said, "I know, she's autistic, she has no sense of where she is." The woman said, "oh." I never thanked her I feel awful. I was too busy crying -- and in shock. I sat on the bench in the store and cried for about five minutes. I couldn't talk to anyone. I just held Ava, who was fine. Little kids were staring at me. One mom came up to me and said, "My son has ADHD, he used to do that all the time when he was her age. I know how scared you are." I was comforted and touched by her kindness, she was so sweet to reach out. She turned to the kids who were staring and said, "Dylan used to do that all the time -- and I got scared, too just like that. Mommies get very scared when their kids run off like that."

I paid for Ava's shoes. The store manager came up to me and said, "Are you OK now?" "Yes," I lied. The store associated said, "Well, at least you got 20% off!" That did not comfort me. He offered her a sticker. I declined. I left the store and cried some more in the car. I was shaking up until the Klonipin I took an hour ago. Now I am tired and have a bad headache.

Ava is a runner, as are most autistic kids. She has no sense of direction, where she is going and no sense of her body. She does not know if I am with her or if I am 100 miles away. This scares me. She could get hurt, be abducted or get hit by a car. I keep thinking of the little autistic girl who got lost in Florida and was found in the swamp, still alive, still wandering.

A few friends recommended a sensor key ring in case Ava runs away again - which will hopefully never happen. I also thought of getting a wrist leash. I have a backpack with a tether, but she hates wearing it. The sensor is in the shape of a bear and the key ring has an alert in case she wanders. When you have a child you have to have eyes in the back of your head. You have to be hyper-aware. But with a child with special needs, you have to be omniscient. Ubiquitous. And have awareness beyond your five senses. With such little sleep, I barely know where I am!

But I am going to get her these items just as a precaution. And with any luck, they will never be of any use. Below is the link in case anyone is interested.

Child locator

Please Follow This Blog - And Learn About SMA

2010-08-08T19:03:00.000-07:00

A dear internet acquaintance of mine, a woman I admire so much, has a beautiful blog, Baby Baby. Her sweet angel in heaven, her daughter June, was born on October 5, 2009 with SMA - Spinal Muscular Atrophy. June left her parents' loving arms on October 27, 2009 and forever remains in the hearts of everyone she touched. Please learn more about SMA. This blog is a lovely tribute to a beautiful girl -- and a poignant testament of a mother's love and a family's strength.

Baby Baby

Most babies with SMA are born after a normal pregnancy, are seemingly healthy, and pass all current newborn screenings. SMA is a terminal and degenerative disease that causes weakness and wasting of the voluntary muscles in infants and children. Specifically, the disease is caused by an abnormal or missing gene known as the survival motor neuron gene (SMN1), which is responsible for the production of a protein essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and die. As the motor neuron network breaks down, the ability of the brain to control muscles diminishes and with less control and use, muscles weaken and waste away. Simply, SMA eventually impacts every muscle in the body hindering the ability to walk, sit, stand, eat, breathe, and swallow. The mind always remains unaffected and children with SMA are bright, sensitive, and playful in spite of their failing bodies.

Beautiful Blog Award and Sugardoll Award

2010-08-08T18:39:00.000-07:00

Thank you, to beautiful Mandy of Mommy Musings for this touching award. She also gave me another award which is:

The rules for this award are to thank the person who gave you the award, THANKS MANDY! Share ten things about yourself, pass this award onto ten fantastic bloggers and finally, contact the bloggers to let them know you’ve picked them for an award.

First, ten things about me (written by Ava):

1. My mom loves the Rolling Stones, Mozart, Vivaldi, Howlin' Wolf, Bob Marley, Rod Stewart, Cher, Madonna and Lady Gaga.

2. My mom cries because she worries about me.

3. My mom was an actress and a model, but doesn't work much anymore. Mostly because she is busy with my therapy and taking care of me. She misses acting, but not the business.

4. My mom loves my dad so much - but they don't spend much time alone anymore.

5. My mom wants to move to Europe one day - maybe Italy or Spain.

6. My mom's favorite baseball team is the New York Yankees.

7. My mom would love me to have a brother or sister - to look out for me.

8. My mom loves cream puffs - in particular, Grandma's homemade cream puffs.

9. My mom's hobbies include yoga, watching Mad Men, cooking and researching autism cures.

10. I am my mom's best friend. She tells me everything. I hope to tell her everything one day.

By the power vested in me by the almighty Internet, I hereby award the following bloggers the prestigious Sugardoll and Beautiful Blog Award:

Source Body Therapy

Baby Baby

Persian Foodie

My Life and Us

The Pure Baby

I'm Still Standing

Ivar Lovaas 1927 - 2010

2010-08-04T07:34:00.000-07:00

Dr. Lovaas developed Applied Behavioral Analysis, a therapy to treat children with Autism. ABA is scientifically proven as the safest and most effective treatment for autism. While it is not the only approach, it is, in my opinion, the best suited approach for Ava, who currently gets 18 hours per week. Thank you, Dr. Lovaas, for your dedication and research - and as my friend Courtney so eloquently stated, "for planting the seed for the many success stories".

Ava Loved to Swing

2010-08-01T18:47:00.000-07:00

Once upon a time, Ava loved to swing. I'd take her to the park and she giggle and laugh upon first sight of the swing. She hated when I took her out.

Once upon a time, Ava said "Mama", "Dada", "duck", "quack-quack", "Abbey", "La-la-la", "Hi", "Walk" and "A-B-C-D". She slept through the night. She read books with Daddy and pointed to Elmo and various objects. She patted her diaper when she was wet so I would change her. She used to look me in the eye to get my attention. She used to smile at Daddy when he came home from work and called her name.

Now, she hates swings. She screams when we walk by them. She sometimes will say "Mama" and "Daddy". She is beginning to verbalize more but has 20 hours of therapy a week rehearsing and drilling the words into her head. She has no body awareness and runs haphazardly - crashing into things and running into the street if I am not there to catch her.

She points in books if prompted. She does not sleep through the night and spends a lot of the night stimming. She is better at eye contact, as a result of the many trials and repetitive exercises of calling her name and holding objects up to our eyes. She plays games with us once again -- she imitates me when I sing. She plays "peek a boo". She makes us all clap our hands and say "Yay!" She plays "tickle" games with me, too. It is nice to have her engage with us once again.

Ava is not the same child she once was. I mourn that every day, keeping in mind that I have to focus on the now and who she is now and will be. Last year at this time, I was panicking over her regression into her own world. I thought I was going crazy and cried because I knew something was terribly wrong. When she was diagnosed I was relieved I was not insane and the doubters were wrong. But the realization that autism is a lifelong disorder sunk in.

Ava will never be the normal child I once knew. But she is still Ava. And I love her just the same.

Catching some Zzzzzs

2010-07-23T18:43:00.000-07:00

For two weeks - thirteen days to be exact - we had uninterrupted sleep for at least 8 hours a night. It was heaven. Glorious. I started to feel human again.

And Ava was not on any medication. I was taking her to the pool every day - or letting her go in the baby pool on my deck. She loves the water. She adores the water. She is so calm, so happy, so content when she is in the water. I even get her to float on her back, as long as she feels me supporting her.

And on the fourteenth day, she was up from 2am - 6am - as were we. She slept through the night the next night - and since, has been up during the night. Last night it was from 2am - 5am.

We sleep in the same room as she does. So she wakes up and sees us. She whines for us to come get her. When I go to her, she is stimming uncontrollably. She babbles nonsense, as if talking in tongues. She tenses her fists and jumps up and down (her typical stimming behavior). She tries to lay down, but cannot relax because her body is stimming. I know she is frustrated. She finally succumbs to sleep when her body has had enough. You don't know how my heart breaks for her.

After she finally settles down to sleep, she will sleep another 3 - 4 hours. However I have to wake her for therapy. She is then tired, cranky and groggy and the whole day is shot. I try so hard to get her into a sleep schedule, but to no avail. It is a constant game of catch-up.

I wish my daughter would sleep. Not just for her, but for the sanity of her parents. It is so hard to function on little sleep.

Bureaucracy at It's Best

2010-07-23T18:21:00.000-07:00

Ava had a good speech therapist. She was compassionate, educated and full of energy and love for her job. Ava liked her. They were working well together. She didn't push Ava too hard, but Ava liked the sessions and was showing progress.

When I told my service coordinator at the state that we were moving, she said the move would be seamless and all the therapists would be able to transfer to the new town and county - except for the speech therapist. Why?

All the therapists are with an agency, subcontracted by the state to provide services. Some agencies have priority over other agencies in placing therapists. My speech therapist was contracted with a different agency than the other therapists. Her agency did not have priority, therefore she could not stay on the team. This is despite the fact that she works well with Ava and has achieved progress in getting her to verbalize.

I complained to the organization which oversees and coordinates all of the services for the disabled (also an agency contracted by the state) and a really lovely woman there told me that, "I am sorry, your current speech therapist is not with the agency has priority in placing a therapist in the county you have moved to, so the speech therapist has to be placed by this agency."

I countered telling her that we had bad experiences in the past with speech therapists and if I already have a team intact, why can't I just keep the team? Isn't Ava's progress and welfare more important than an agency making money? And do you know how hard it is to have a new person start? Children on the spectrum do not respond well to change - and why penalize Ava because of state contracts? It is "bureaucracy at its best", I added.

Of course, I was met with, "I am sorry, but the state has to honor it's contracts with these agencies." and "I know it will be hard to transition..."

Her former speech therapist was so sweet - she offered to talk to whomever took over to bring them up to speed. I was so grateful to her. She had integrity, compassion and commitment.

Ava's new speech therapist started the other day. She is young, sweet and very well educated. She also takes private clients at a well-known speech center. She is more educated than Ava's former speech therapist -- so all this is a blessing in disguise. Ava liked her -- she looks a little like my sister. So we are starting again, and hopefully Ava will continue to progress.

We Moved

2010-07-22T19:44:00.000-07:00

We moved.

We put our stuff in storage, took our summer clothes and moved into my parents' house. We will be here for six months while our new home is being built. We bought a pre-construction, new townhouse in a new development in a Northern NJ suburb.

Moving can be a harrowing experience for a child on the autism spectrum, but it wasn't for Ava.

We didn't prepare her much. The day we were moving into my parents' house - where we share a small room with her on the lower level - we dropped her off with my mother while we carted things to their house. First, the toys. Then the clothes. Then the extraneous stuff -- how did we get so much STUFF? After the movers carted our furniture off to long-term storage, we took her back to the empty house. We showed her the living room, kitchen, her room and the basement where her therapy took place. She was confused, but loved the open space. Then we took her back to my parents' house and showed her the crib (with the same linens we used at our house), her toys and her high chair. We told her that we were living with Grandma and Grandpa now. I don't know if she fully understood, but she seemed to be fine. Of course she is fine -- she is spoiled ROTTEN now!

The real test came the next morning when the therapists came to my parents' house. Ava had a stunned look on her face like, "what the heck are you doing here?". She had two pretty good therapy sessions that day, but was not working as hard as she had been previous to our move. I think she thinks she can get away with things at Grandma's house. She had a miserable OT session, but that is to be expected.

I think moving to my parents' house is harder on us adults than it is for Ava. We have to adjust to schedules, living in tight quarters and having less privacy. We are used to our creature comforts and it is an adjustment. My parents have less space and so do we. The good part about it is, we get 'round the clock babysitting and they get to see their grandchild.

In six months they will be happy to be rid of us I am sure. But right now, we have a roof over our heads and Ava has a lot more adults to help her and spoil her. I just hope she transitions as well when we move again in six months!

Ava on NJN News

2010-07-09T19:51:00.001-07:00

A Blueprint for a Lifetime of Support

2010-07-09T19:42:00.000-07:00

Autism New Jersey, the largest advocacy organization for individuals with autism in NJ, released the results of a landmark review of more than 500 interviews to determine the best ways that the needs of individuals with autism, their families and professionals who support them would be better served in New Jersey.

I read this document which explains the needs of the autistic community and how to reach our goal of serving them so they can have productive, active and meaningful lives.
I was interviewed by several news outlets on the importance of this document and its meaning to me, as a parent of a two year-old on the autism spectrum.

Here are some clips of my interviews, NBC New York news and NJN Nightly News. Some of which have footage of my beautiful child. I do this for her - and for all of the other children and adults like her.

View more news videos at: http://www.nbcnewyork.com/video.

Crabby and Lovin' It!

2010-06-27T20:13:00.000-07:00

Ava loves her baby pool as much as the big pool.

Water

2010-06-26T20:35:00.000-07:00

I marvel sometimes how healing water is. I know it can calm, refresh, rejuvenate. Who doesn't enjoy a warm bath or hot shower? Who doesn't love to be in a hammock on the beach listening to the sound of waves crashing against the shore? I recently read a quote, "If there is magic on this planet, it is contained in water."

What about autism and water? My daughter hates to have her hair washed, but other than that, she loves water. She loves to see it trickle from the faucet, she loves the sound of a tub filling and she adores her bath and the pool. We have an in-ground pool in our complex, a block away. I take her there, usually crying because she does not want to get in the stroller, but she quiets down once she sees the pool. It immediately calms her and she starts to sing.

I usually go in the water with her, holding her in my arms. We walk around the shallow end of the pool, I lay her back or make her swim forward, holding her the whole time. She sings and hums, and relaxes.

Her occupational therapist told me that the water is like a nice massage for Ava, who desperately seeks input for her body. She says it is the best thing for Ava and recommends long baths and trips to the pool every day. Ava loves to squeeze into small places and craves hugs. The water pressure provides sensory input at every inch of her body that is submerged. When I take Ava out of the pool, she is always calm and happy. It does not help her sleep, but it does wonders for her mood.

It would be interesting to find a study on the affects of water exposure on autistic children. I am thinking of putting Ava into a swim class.

Haircut

2010-06-23T13:48:00.000-07:00

Ava got a haircut yesterday. The hairdresser cut it too short for my taste -- and he took SO long. It's hard enough to get a kid on the spectrum to sit - but this was tortuous. He had major OCD. He kept combing her hair over and over. And he kept spraying her hair with water, which is something she is not fond of. She looks cute, though.

We stopped by Grandma and Grandpa's house today and played with the water table. Ava wanted to get in. She really loves the pool. She loves water. It is like a massage to her, as reported by her Occupational Therapist.

NORMAL!

2010-06-17T15:01:00.000-07:00

Ava's neurologist had his colleague look at Ava's EEG, and she concluded it was normal. YAY!

We are going to continue on Intuniv for another weekend and see how she is doing. Currently, she is not sleeping, but her ADHD behaviors have improved. She has great focus and is motivated to learn. But bottom line, she needs her sleep.

To Be Continued...

No sleep but...

2010-06-15T18:54:00.000-07:00

Have you ever seen anything so beautiful? A sleeping child. So peaceful. So innocent. Don't you want to pinch her, she is so cute!

Ava is on Intuniv, an ADHD drug, which is actually a re-worked blood pressure medication. It is geared towards children, unlike Clomidine which is an adult medication used on children.

Update: she is not sleeping through the night

However, she is more focused, has started to verbalize and is very attentive during her therapy sessions. She is making a lot of progress in just a few days. Is this the hopeful?

She called me, "Mamma". She asks for "Mamma".

She has started to repeat words - ball, baby, bear, to name a few. Her eye contact is better. She sits and reads books. She is motivated during therapy. She gives me less of a hard time. She does not stim as much. She stopped making those weird, funny faces. Yes, she does eat the bubbles in her bubble bath and squish her food in her fingers. But I will take what I can get now.

Could this be a miracle drug? Or has she turned the corner? And when am I going to get a full night's sleep again?

I have not yet heard back about her EEG, but I will when her doctor gets back in the office on Thursday.

Uncertainty

2010-06-12T18:50:00.000-07:00

The doctor called and said there was an abnormality in Ava's EEG results. However, he is getting a second opinion from his colleague who is an epileptic specialist. But I won't get the verdict until Monday.

He put Ava on Intuniv, a new ADHD medication which helps with sleep. I feel comfortable with her on Intuniv because it is geared towards children. The first night she slept, but was very irritable when she woke up and went back to sleep for another 3 hours. I think she had a tummy ache from the medication. I decreased her dose by half and last night, she did not go to sleep until 11:30pm, but slept until 6am. She took a nap at 1:30 for 2.5 hours.

The positives in all of this is that Ava seems more focused in therapy. Yesterday she said "ladybug" and "mama" referring to a picture of me. Last night when I put on a DVD she did not want, she brought me the remote and said "Mama". Wow. She never did that before! And today in therapy she referred to herself as "A-wah". Double wow! Moments like that give you hope. Parents of autistic children cling to the small things - little miracles. Little glimmers of hope.

I wish this would all straighten out. I so want my daughter to hit a stride with sleep, therapy and treatment. I feel like I am drowning in the chaos sometimes. I hate that she is a guinea pig - we are testing medication on her. But sleep is so important and we have to strive for a regular sleep cycle that allows her brain to function properly during the waking hours.

Sobering Moments

2010-06-12T11:54:00.000-07:00

Just when you think your life is crumbling, things happen that sober you into reality. Wake up calls. "Hey, things are not that bad - stop complaining! You wanna hear bad? Listen to this!" Boom. Reality check.

My niece's mom, my brother's in-law's ex-wife, lost her brother in a horrible car accident two weeks ago. He went out for a pack of cigarettes and stopped at a red light, a few blocks from home. He was hit head-on by a speeding car, that was being chased by the police. He died instantly. He was 37 years-old with two young girls - ages 4 and 1. He had a lovely wife, a beautiful home and a great career. He was very much loved and generous to a fault. The driver of the other car, a young man in his 20s, was killed as well as a passenger.

My niece has been very upset - and her mother's family is distraught and numb. There are no comforting words for a loss like that. It is a tragedy you cannot justify. But it is a lesson for the rest of us:

Just when you think life is bad, remember that it can be snatched away in an instant. So be thankful for the moment. We are here. And every second is precious.

EEG

2010-06-08T10:59:00.000-07:00

Could you watch your child go through this?

Someone get me a drink. Make it a double.

Ava had her EEG today. The nurse was very nice and extremely gentle. However, they had to restrain her in a papoose-like contraption. They stuck electrodes all over her head with paste and gauze. She had to watch crappy Sponge Bob because that is all that was on tv.

Thank goodness Mommy carried a binkie with her. I know, I know! Binkies are BAD. But you know what? It came in handy today! Binkie was our saving grace!

At first Ava was confused. Then she cried -- she hated the feeling of the goop on her head. She cried for maybe a minute. Then she was calm and content. Like a baby that was swaddled. I know her sensory issues came into play -- she seeks hugs and tight spaces - and this was calming for her. She felt the input her body craves. She fell asleep for the length of the test and woke up when the nurse was washing her hair. She cried more at that than anything else. She even slept through the strobe light they put over her.

I, on the other hand, was a wreck. Seeing her like that make me cry. When she calmed down and fell asleep I felt better, realizing she was comfortable and calm. But it made me sad inside, I couldn't explain to her what was happening. Before she fell asleep she kept looking at me like, "Mom, what are they doing to me? Why are you standing there like a lumox?"

When I got her out of the restraints, she was so happy. She hugged me tight and started singing.

The Morning After...

2010-06-04T07:02:00.000-07:00

We gave Ava her first dose of Clonidine last night before bed. She fell asleep within 20 minutes. I was a wreck. She is 2 -- why do we have to give her a blood pressure medication that is not even approved for children? So many thoughts went through my mind.

Charlie crushed the pill, cut it into eighths and gave an eighth to Ava in some milk. She loves milk from her bottle, so she drank it right up.

She slept the whole night -- barely moving. She was ASLEEP. Sound asleep. I checked her throughout the night, to see if she was breathing. She woke up at 8am, happy and content. She was singing, not groggy and cuddly. I was so relieved.

I am watching her like a hawk today to see any signs of side effects - which would be grogginess and light-headed-ness. So far, so good. I think she will be fine.

I really do not want to give her medication, but she needs rest. Her brain needs to function and quite frankly, so do we. I haven't slept in a long time. I can't think straight. I can only imagine how this affects Ava. Her little body, and her forming brain need sleep to grow. Hopefully now she will get that.

Day 1

2010-06-03T20:26:00.000-07:00

Update: Ava went to the ENT yesterday and had a hearing test. She can hear. She can't process, but she can hear. No surprise there.

Update: Ava went to the neurologist today. She is having an EEG next Tuesday to see if she has a seizure disorder (highly unlikely). The doctor put her on Clonidine, a blood pressure medication often used in small doses for ADHD, tics and sleep disorders in young children. I am a wreck as I type. She fell asleep within 1/2 hour giving her the medication. She is sleeping in a bed next to ours in our bedroom tonight. I will be watching her -- and hoping she is OK.

If Clonidine does not work, we have to try some other medications. I look at her little body and ask why I have to do this to her. She is so CUTE! How can I give this cute little monster strong medications? What are we doing to her?

Well, I am going to take my own medication to calm down right now. Will keep you posted.

The Game

2010-06-01T19:28:00.000-07:00

Ava is obsessed with a game, an iPhone app called FIRST WORDS. She likes the animals.

It is a spelling game for toddlers where you drag the letters to form a word, like CAT, BIRD, DOG. Once you spell the word, the image moves and makes the sound of the animal. It is cute, and Ava is an expert at it. I don't have to help her at all. She knows where the letters go and can turn my phone on, find the game and press play to activate it.

The problem? She cries! Hysterically. Her favorites are the BIRD (see above), CAT, FROG and DUCK. When the image comes on the screen, she smiles, and then puffs out her lower lip, slowly dragging her finger to spell the word whining the entire time. By the time she spells the word, tears are flowing, she waits for the image to do it's animation and make the sound and then she bursts out in full out tears once the image disappears. She is inconsolable and continues to play the game until her other favorites appear on the screen. This goes on and on. I tried taking the game away from her when she cries and giving it back when she calms down, but she cries HARDER. Waterworks. Woe is me, I am Ava Jolie!

The positive is, she is learning to spell and has really developed her matching skills. Her coping skills, not so much. She spells and repeats C-A-T. She says "meow" and "tweet tweet". To be quite honest, she learned this from the game, not all the therapy she's been doing for the past eight months.

She loves the game, and always snatches my iPhone to play it. Sometimes she presses the wrong buttons and calls back some of the people I've been avoiding. However, I do have to let her play the game in small intervals. She is getting really obsessed and really emotional when she plays it. Shouldn't games be fun?

I also downloaded a few other games -- mostly ABA flashcards and alphabet games. She loves letters. It is kind of cool that Ava has learned how to play a computer game at 2 years old -- but I know that is somewhat typical for autistic children. If it helps her speak and communicate, that is great. But the meltdowns over the bird and cat, have to go!

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2010-06-01T14:46:00.001-07:00

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If it's not one thing...

2010-05-28T18:42:00.000-07:00

Ava's speech therapist quit on her. We still have not found a house. We have to be out of our current house by July 31. We have to start the process to get her into an autism program in a good school district. We've barely slept this week - Ava has been up at night from 1am to 6am two nights in a row. At her team meeting last night, Ava's lead coordinator told me I had to buy some things -- she gave me a list and one of them was a tent. Does she think we are made of money? I still have allergies, it's been two weeks. I am tired and feel out of shape and lethargic. We never get to go anywhere or do anything. I have no energy to cook or plan meals. My husband just wants to lay on the couch and watch baseball. I don't blame him, he's tired. So many people in our lives have demands on us, and we just do not have the energy to deliver.

I am looking forward to the long weekend. We are not doing anything special, but at least the therapists won't be invading our house and we do not have to be anywhere or do anything.

I would like one day to sleep late, read the New York Times in bed and drink coffee. It ain't happenin'.

Thanks for letting me vent.

YOU DIDN'T BREAK UP WITH ME! I BROKE UP WITH YOU!

2010-05-26T20:07:00.000-07:00

Ava's speech therapist came by last week and at one point threw her hands up in the air in exasperation and said, "I don't know what I can do for your daughter! She won't play with me, she won't look at me. She is the most challenging case I've ever had! I don't know what to do with her!"

This was the first time this therapist worked with Ava. Ava did not know her. In Ava's defense, this woman was in her face and loud. The therapist brought out toys Ava hated: a train and a puzzle. I told the therapist Ava loves baby dolls, stuffed animals and dinosaurs. The therapist left my house saying she "would have to talk to her college professor and surf the internet to get ideas on how to deal with Ava."

Don't let the door hit you on the butt on the way out!

So a few days went by and I called my service coordinator and told her that this speech therapist was not working out because of scheduling issues. It was partly true, the speech therapist wanted to have her session when Ava already had therapy with the ABA therapist. I could not move the schedule around for the speech therapist. My service coordinator agreed to find another therapist for Ava.

Less than 10 minutes after I hung up with my service coordinator, my phone rings and it is the first speech therapist. I had to feed Ava dinner, so I did not answer. She left a message, "I cannot work with Ava any more, I am sorry. Please call me back and I will tell you why." I didn't call her back. Wait a minute, you can't break up with my kid! She broke up with YOU! And how unprofessional! Who does she think she is? How could she tell a parent that this is the most challenging case she's ever had and she has to call her professor? What parent wants to hear that someone is "at a loss" with their child?

I felt so awful - even though I was happy to be rid of the therapist. Why did she give up on my child? Is Ava so far gone? Does anyone else think that? Of course, it made me cry.

I know the therapist was probably inexperienced, not to mention, VERY unprofessional. But why is my child a MAGNET for unprofessional hacks? Why do we experience resistance at every turn? WHY? There are so many autistic children, why is my child getting the B team or poor treatment despite my hard work and efforts to get her only the best????!

I am so frustrated and angry now I cannot tell you. The bright spot is that we were assigned a new speech therapist, a woman who could accommodate our schedule and who works in a special needs pre-school in the next town over. I hope she works out.

Can someone give my kid a break already? As if having autism was not hard enough.

Autism Walk Update

2010-05-24T18:35:00.000-07:00

On Sunday, May 23rd we participated in the Autism Speaks Walk Northern NJ in Paramus, NJ. It was a good turnout. Ava did not attend, she was up most of the night and slept in that morning...

My mom, dad, my husband and two friends joined team All About Ava. We did the walk (around the parking lot of Bergen Community College) and visited the various information tents and vendors. The only downer part of the day, besides getting 2 hours of sleep the night before, was that the organizers hired a teenage thrash metal band to perform at the event. Want to see autistic kids freak out? Hire an amateur thrash/death metal band! Wow! Talk about over-stimulation! Oh, and not having Ava there was a bummer, too.

We raised $1,845.00! I raised over $1000 so I was able to be accepted into the Grand Club tent! It was cute -- just some refreshments and a cute pin. I also got a t-shirt!

I want to sincerely thank all of you who donated to our walk. We did it not only to raise awareness for autism, a disorder that blindsided us seven months ago, but also to support funding for research and services to better the lives of those with autism. Autism Speaks has been a great resource to those of us who are not familiar with autism and helped us cope with the diagnosis of our beloved daughter.

So thank you all.

Click Here to Donate

Binky and Bottle Lose -- this time for good!

2010-05-18T10:20:00.000-07:00

Oh, the never-ending battle with the binky and bottle!

At the speech evaluation last week, a speech pathologist told me "NO MORE BINKY OR BOTTLE!" Ava has a protruding tongue, with oral-motor therapy she will be able to get her tongue muscles back, but the binky and bottle encourage tongue thrusting, which is counter-productive to learning speech. The binky and bottle have to go.

So here is the plan:

Ava never gets the binky during the day. When we take her upstairs at night, she gets a binky, but we take it out of her crib when she sleeps. My husband wants the binky in her crib all night, in case she wakes up, which is 90% of the time. He takes it out of the crib before she wakes up in the morning. She still looks for the binky when she wakes up, and whines for it. But so far, it is OK. She does look for it in the place we used to keep the binkies - a small heart-shaped box with flowers on it on the kitchen counter. But now there is only some hand cream in there. She gets SO mad when there are no binkies in there!

With the bottle weaning, I give her a straw cup throughout the day. The "honey bear" straw cup, which teaches a child how to suck through a straw. I also have a few of the Gerber "Tossables" straw cups. She seems to be doing REALLY well with those. Yes, the mess factor is greater than with a sippy or bottle, but I guess I have to allot more time to cleaning.

I give Ava a bottle of milk at night after dinner. She loves her bottle SO much. I have been decreasing the amount of milk in the bottle every night. I offer her more milk in a straw cup, which she has yet to take. But she does not ask for more milk. I may start giving her milk with her dinner too. She sucks her bottle of milk down in 5 minutes, maybe less. And then she is done with it. She is not a kid who lets the bottle linger in her mouth or takes it to bed with her. I never got into that habit, thankfully!

But as soon as the bottle is fazed out -- I anticipate a lot of screaming. I am not looking forward to this. Mostly because my husband works late and he probably won't be home before 8pm. So it is the "Mommy and Ava show" until she goes to sleep. I have to remember to have a glass of wine handy after 7pm.

Thank you!

2010-05-18T09:26:00.000-07:00

Thank you to all who read this blog and support us in our journey. It means so much to me -- and Ava.

I know sometimes my posts are self-absorbed and seem to be "crying" out for help. In those posts I am screaming to the Universe, to all of humanity, not anyone specifically. I wish there were more understanding and support publicly for autism. It is such a puzzle, however now with epidemic rates of diagnosis, we are seeing autism in the news more and more. If only the politicians of the world recognized this disorder and provided federal and state support for those with this disorder.

Thank you everyone. For your support and positive energy.

Scared

2010-05-13T20:17:00.000-07:00

Ava is functionally deaf. It hit me today.

Functionally deaf. Functionally deaf. Functionally deaf. (i.e. Can you hear me? Yes, but I do not understand ANYTHING you say.)

Will Ava ever get over this? Will she ever have a normal life? Will she ever be able to speak, converse, express and reciprocate language? Will she always be dependent on me - even as an adult?

You know, this autism thing SUCKS - because you do not know. And guess what? NO ONE ELSE DOES EITHER. With autism, EVERYONE generalizes, EVERYONE guesses, EVERYONE has no clue! Even the "experts". NO CLUE.

Insert explicative yourself, this is a G-rated blog. But you get the picture.

And so many parents who are angry, upset, confused. "It's vaccines!" "It's the environment!" "It's toxins!" "It's bad parenting!" "It's old moms!"" It's old dads!" "It's genetic." "It's in-vitro fertilization!" "It's c-sections!" "It's everything!"

But let me tell you something, no one knows for sure.

I look at my daughter and wonder -- will anyone ever know? Will someone PLEASE figure it out? And why, why, why on earth is it IMPOSSIBLE to get her what she needs to possibly overcome this disorder so that her life is not a complete mess later on? So that she does not spend each day in extreme anxiety, fear and discomfort? So that she is not ridiculed, stared-at and avoided? WHY? ANYONE WANNA GUESS? I will tell you -- MONEY! If we had money, treatment would not be an issue. She would be on the road to a typical childhood.

I have a child who is autistic, functionally deaf, with sensory processing disorder, auditory processing disorder, a sleep disorder and apraxia. Where can I go to help her? I mean, REALLY help her -- not some lame attempt to put a band-aid on her until she turns three.

Someone tell me where and how. And I will do it.

Functionally Deaf

2010-05-11T19:21:00.000-07:00

I've been told Ava is autistic many times. I know it. She's had the diagnosis for over 8 months now. It was confirmed again a month ago when we visited the McCarton Center. I've heard it from her therapists, her service coordinator, her pediatrician and other experts.

But every time I read her diagnosis in a report, every time I take her to another expert, it still hurts. It still sends fear and uncertainty throughout my body. It still makes me worry. And I still cry. It stabs me in my heart.

Yesterday, I took her to a well-known speech pathologist who is also the director of an autism school in New York. And I was glad I trekked all the way to New York to meet her.

She did a fair assessment of Ava and worked with her a bit. But she said something I have been saying for months, almost a year actually: Ava is functionally deaf. Now, Ava can hear, she can hear Elmo sing from the other room. She has looked at the sky when an airplane goes by. But she cannot hear words. It sounds like the teacher on Charlie Brown to her. If I sing, she knows what tune it is - but she does not know the words.

THAT'S WHY SHE IS NON-VERBAL! She is functionally deaf. It makes perfect sense. And I have been saying this for SO long. I tell all her therapists, her doctors, whoever will listen that Ava has NO idea what I am talking about. If I sing Twinkle Twinkle, she recognizes the tune -- but if I tell her I am going to give her a bath or change her diaper, she is clueless. If I tell her there are toys in the other room she does not understand. I could be speaking Arabic, Eskimo or French, she cannot comprehend my words. And most disturbingly, she still does not respond to her name. I also know if I yell at the top of my lungs, it is like I whispered something in her ear.

So the speech pathologist gave some recommendations in her report, one of which was, MORE SERVICE HOURS. (Oh yeah, like that will happen.) However, this report is yet another expert documenting that Ava needs services. She also suggested specific techniques to get Ava to respond to commands using sing-song.

Now the trick is to get everyone on board. They are all locked into their plan they picked out for Ava. But as a parent, I have the right to override the plan and suggest things. So I am doing that. She is 27 months old and she does not what I am saying to her.

She used to know what I said. When she was about 13 months old, in the morning I'd tell her, "come on, we will go downstairs and play with ladybugs". I bought her a few rubber ladybug bath toys that she loved. She would say, "day-dee, day-dee". Sometimes before we went downstairs in the morning, she'd request her ladybugs, "day-dee! day-dee!" She would say it over and over again until I brought her downstairs to her ladybugs.

Now she cries or whines when she wants something. Today she pointed at a video she wanted to watch. I was proud of her. But those requests are few and far between. Supposedly they are only working on requests in therapy, so maybe that is why she pointed today.

So in an attempt to put all my ducks in a row, I find out she is "functionally deaf". What else am I going to uncover?

Happy Mother's Day!

2010-05-09T19:31:00.000-07:00

Happy Mother's Day to all moms, step-moms, caregivers and nurturers! Biology does not define motherhood, it is in the heart where one becomes a mom.

This Is My Life by Ava Jolie

2010-05-04T18:59:00.000-07:00

Hi. My name is Ava Jolie. I am 2 years and 3 months old. I have autism, apraxia and sensory/auditory processing disorders.

I am a happy toddler. I love my toys. I love baby dolls - they are fun to hug and feed. I love Elmo, Cookie Monster and Abby Cadabby. I am a really good singer and I sing all day long. I play music on my keyboard and I love to play the cymbals and bang on a drum, too.

Eating is fun. I like my food - especially broccoli, string beans, cheddar cheese, macaroni and cheese and cherries. I stick raspberries on my thumb and eat them. I also play with my food, it is partly because of my sensory issues and partly because PLAYING WITH FOOD IS FUN! Almost everything ends up in my mouth. I eat inedibles like fuzz, paper and cardboard. I love my bottle and my binky, too.

My mommy is my favorite person in the world. She gives me comfort and she is so fun to cuddle. We play "peek a boo" and sing together a lot. Daddy puts me to bed and gives me big hugs. I love all my grandparents, too. My cousins are a lot of fun as are my aunts and uncles. I have good buddies too. All of them are very cool kids. We like hanging out and we really don't mind sharing our toys.

Well, I have to admit that I do not talk anymore. I try -- but it is hard for me. I speak my own language -- Ava Joliese. I have no clue why no one else knows what I am talking about. I used to say words - when I was about 12 months old. I said, "duck, "hi", "baby", "quack-quack", "Abby" and "lamb-ie". Abby was for Abby Cadabby and Lamb-ie was a cute lamb sock puppet. Then I stopped talking when I was around 15 months old. I stopped looking at Mommy and Daddy, too. I started running up and down the hallway, over and over again. I still do that. It's a lot of fun. I also like to "stim". I open my mouth wide and tense my fists. It makes me feel good. I have no idea why -- but it does. I "stim" when I am really excited or happy. I saw the lobster tank at the supermarket the other day and I had a "stim fest" in the shopping cart. I saw a puppy the other day at the park and it was "stimming time" for me!

I know sign language. I can sign, "give me" and "more". I can do the sign for "cracker" and "candy". Sometimes I say those words -- sometimes, I don't. I call Mommy "Ni Ni" and Daddy is "Da-da-dee". I can point -- but mostly I cry when I want something. I don't cry a lot, only when I cannot express myself.

I have to be honest with you. I don't like my therapists -- I shouldn't say that -- I DO like them. But I hate the things they make me do. I just want to play on my own-- watch Sesame Street or Yo Gabba Gabba -- or snuggle with Mommy. But those broads annoy me. "Ava do this. Ava do that." Oh -- SHUT UP and leave me alone with my toys! I sometimes cry when they come to the door. Don't get me wrong, they are really nice ladies -- but they cramp my style.

I have a lot of therapy too - although Mommy, Daddy and the doctor say I need more. I currently get 22 hours a week. Supposedly all this therapy will help me, but right now, it is annoying to me. Mommy says she hates to hear my cry. Mostly, I cry when I don't get enough sleep, which is often. The doctor said I have a sleep disorder. I wake up in the middle of the night and I can't get back to sleep unless I play REALLY loud and jump up and down in my crib. I have a party with my stuffed animals! I don't care if Mommy and Daddy come and get me, I just wanna party! Wihooo! But all the partying during the night makes me REALLY tired during the day -- and I have to be up early to see those damn therapists. Don't they know I need my beauty sleep? When I am tired, it is hard to learn and I get frustrated. Mommy and Daddy are really tired, too.

Things are not always so easy for me. I get overwhelmed in crowds and when there is a lot of mixed noises or bright fluorescent lighting. I love the sound of running water -- but a noisy, dark restaurant scares me. I get frightened of lots of things, too - mostly images or funny voices in cartoons. But I guess most kids do, too. I am willing to make the best of any situation -- but sometimes my body does not agree. I need hugs and tight spaces or I feel uneasy. I love to run really fast and watch my feet or the sky in open spaces, but if I stand still in an open space, I get scared. I hear Mommy, but I can't understand her sometimes. She has to show me things in order to get me to understand.

This is my life and overall, I am pretty happy. I just wish more people understood me -- and I can tell them how I feel.

House Hunting and Autism

2010-05-03T19:48:00.000-07:00

We are house hunting. We have to be out of our current rental by July 31st because our landlords sold the house. I thought they'd have some trouble in this economy, but after a week on Craigslist, they sold it. They got a lot less than what they were asking for -- but I am happy for them. And I wish we could have bought it. It is in a bad school district with a sub-standard autism program.

So we are moving again. We have to quickly find a home and get in a school district before Ava turns 2 1/2. We want to buy something this time. Yes, we want to be home-owners, but I so dread moving because I know Ava will be traumatized. She loves where she lives now. She is finds comfort in her home. I hope she can adjust but I know it is difficult for kids on the spectrum.

However, after going to see about six houses last weekend, I realized how hard our search is going to be. Not only do we have to find an affordable home -- even in this housing slump it is hard to find a house in our price range in a good school district, we have to find a school district with a good autism program or a district willing to send her to a private autism school or an out of district program. With all of NJ's budget cuts in education, it will be hard to find a district that will send her to a private school.

We need to find a safe house, one that can be child-proofed for a special needs child with gross motor and sensory issues. I want a finished basement because I don't want Ava to fall down steep steps or get hurt. We have to find a safe neighborhood. We have to find a house that is not close to a high traffic area. Our property has to have a fence. We can't have ponds, lakes or creeks near our property. And our new home has to be in a nice, quiet neighborhood with conscientious neighbors. It is a tall order, I know. I also want an attached garage, central air, nice appliances and a family room for Ava's therapy.

Ava is a "runner". If there is an open space, she will run without abandon. Last week I took her out of the car and put her down. I turned my back for one second and she bolted down the street. Thankfully, we live in a cul-de-sac. But sometimes my neighbors speed down the hill and into their driveways like bats out of hell. I have to be so careful. We may get a bracelet for her to wear or a backpack with a leash. Oh I know it looks cruel, but I am so afraid for her! With all of the missing autistic children, you can't be too careful.

I hope we find a new home within the next few weeks -- and it is a safe haven for Ava.

Helping Others in Your Time of Need When Autism is in Your Life

2010-04-29T18:21:00.000-07:00

Autism is a burden. An albatross financially, emotionally and physically. It takes every penny, every ounce of strength, the fiber of one's being to care for someone with autism.

And what happens to the caregiver when others need your help? Autism taps us out. We can give and give but sometimes there is nothing left. It is disheartening. It makes us feel even more inadequate. Autism is unmanageable and wreaks havoc on our lives.

I wanted to give more to the Haiti relief effort. I want to help friends and family in need. But I am limited. I have to care for a child who may always need care. I have to prepare my life as if I will always have to care for her as I do now. She will always be a baby and always have large expenses for care and treatment.

It is the plight of any caregiver. The invisible army of people who are worked to the bone and emotionally spent. When you are a caregiver -- especially to someone with special needs, you have little room to give. Even if you so desperately want to give.

Help Minty! Guest post

2010-04-28T15:36:00.000-07:00

click this link: Help Minty! The Minty Python Benefit to save a baby with a rare form of brain cancer

(from the Minty Python blog)

Araminta “Minty” Python lives with her mother, Mama Python, in Brooklyn, NY. They earned their names through their voracious appetites and ability to eat twice their body weight in a single seating.

Born in NYC in the early hours of a humid July 10 at 36 weeks, Minty weighed in at a modest 4 lbs 13oz. Delivered in by emergency c-section to a severely preeclamptic mother, Minty amazingly did not even need to go into NICU.

6 weeks later, on August 24, Minty was crying a bit more than usual. Her pediatrician immediately recognized full-blown hydrocephalus, and a CAT scan hours later revealed a mass. A temporary drain was put into Minty’s head that night.

An MRI the next day confirmed a tumor at the base of Minty’s brain, and the tumor was removed that night. Minty was discharged on September 11, having undergone 4 head surgeries in 11 days, all before she turned 8 weeks old.

The original diagnosis of desmoplastic medulloblastoma was countered in mid-September with anaplastic ependymoma. Minty started on the Headstart III protocol in October, which is 6 rounds of high-dose chemotherapy, ending in an autologous stem-cell rescue of leveled bone marrow. The aim is to avoid radiation in children under the age of 10 years.

Minty tolerated the chemo well, and with a lot of bouncing in and out of hospital, as well as a couple of 3-week stints inpatient, completed 5 of the 6 rounds. Then, an MRI on March 12, 2010 discovered several lesions that had grown on high-dose chemo. Minty was immediately pulled off the protocol, and multiple doctors/institutions confirmed the diagnosis of approximately 4 new cancerous tumors.

Since attacking the tumor did not work, the next step is to starve the tumors by going after the blood vessels that feed them. Minty will begin with chronic low-dosing of 4 oral drugs a day, 7 days a week, as well as working with energy healers.

When not drinking milk (about 8 hours a day), Minty likes to flirt with anyone who will play with her, and endures the many dress up sessions her mum puts her through. She loves to honk people’s noses and hear them go “Beep-beep!” The word “baby” sends her into a fit of giggles, and her favorite song is “Rainbow Connection.” Wave anything vaguely resembling a camera in front of her, and Minty lights up, puffs her chest out, and basically goes nuts.

Like many babies, Minty has dimply knuckles, pudgy feet and a smile so pure and wide it lights up a universe. Not like so many babies she also has a BROVIAC, g-tube and shunt, which can really mess up a cute outfit.

Mama Python’s real name is Mei Lai, and living off of life savings, she has been lucky enough to be able to dedicate herself 24/7 to Minty’s care. Mei Lai has spent the last 15 years working in the wardrobe department on many films and TV shows, and looks forward to being able to re-join the workforce once her daughter’s health permits it.

Thank you for helping Minty fulfill her destiny.

Binky Wins!

2010-04-27T20:46:00.000-07:00

Well, the binky won!

The therapists agreed that the binky grounds Ava sensory-wise and they want her to keep it for now.

So, she gets to keep the binky.

Today is Another Day! A beautiful guest post

2010-04-26T18:07:00.000-07:00

MommytoTwoBoys is a wonderful autism blog that I read. Her post today sums up every day for a parent of an autistic child. Beautifully written and so heartfelt.

Today is Another Day!

Binky 1 Mommy 0

2010-04-21T07:21:00.000-07:00

I took away all the binkies on Saturday evening. Ava fussed a little, but she had a runny nose from allergies, so that may have been the cause.

Who am I fooling? She wanted her binky!

Sunday was OK - she had a lot of therapy and a nice nap, so she was preoccupied. Monday she was cranky and cried when the therapists came over. On Tuesday she had two therapy sessions and a playdate. She was good most of the day but was agitated at dinnertime. I had an exhausting day with her, she did not sleep through the night the night before, she had no nap and was cranky. I even yelled at her. Something I have only done twice. She has no reaction when I yell, but it still makes me feel like a bad mom.

At 8:30pm I have her Benadryl for her stuffy nose. Nothing was pleasing her. She cried at every television program I put on for her. She clung to my legs, begging to be picked up and held. I was trying to make dinner for my husband who was working late. My dishes were piled in the sink. Toys were every where. I was starting to have a panic attack - it was too overwhelming for me at the moment.

And I gave in.

I shoved a binky in her mouth. She put her head on my should and hugged me tight. Damn.

I put her to bed and she immediately curled in a ball and fell asleep. She did not bother to play were her stuffed animals or play peek-a-boo underneath the blanket. She was in dreamland immediately.
She woke up in the morning - sleeping 12 hours -- with a binky in her mouth. A horrible reminder of my weakness the night before. But today is another day. Hopefully with a better night's sleep I will be stronger.

BYE BYE BINKY!

2010-04-16T20:56:00.000-07:00

It's Binky Fairy time in our house! You know, when the Binky Fairy comes to gather all the binkies and give them to the new babies.

This weekend the binkies will disappear. Ava was never very attached to her binky - but she will pop it in her mouth when she sees one. If I try to take it from her, she grabs it back. She is not dependent on it, though. She can fall asleep without it just fine. But since she has an oral motor, input-seeking issue with her mouth - she loves her binky. We have about 20 in the house!

My mom was big on the binky. Whenever she watches Ava, she sticks a binky in her mouth. I didn't really care, I never gave her one. My husband gives it to her when he puts her to sleep. But the order has been made by the therapists, NO MORE BINKY FOR AVA. Binky verboten. No Binky Zone.

Speech therapists hate binkies. Binkies encourage tongue thrusting which is counter-productive to speech and oral motor therapy. Ava has low tone in her tongue and mouth and the binky does not help. If she was a typical child, I'd let her have the binky as long as she wanted to. But she has a lot of issues, apraxia, oral motor -- binky is not helping matters.

So as of Sunday at 11:59am, there will be no more binkies in our house. (I am toying with the idea of keeping it in her bed, but I should just get rid of them cold turkey, right?) And did Mommy mention that she needs to refill her Klonipin prescription before the Binky Purge begins?

Binky-less in North Jersey here we come!

Now THIS is political

2010-04-12T19:55:00.000-07:00

As a parent, can you sit and watch as the services your two-year old autistic child needs disintegrate from lack of state funding? Can you be quiet and complacent as school districts which have good autism programs are denied the necessary funding to operate and the teachers who will be teaching your child in years to come are laid-off? Is it possible to be happy that the leading state autism advocacy group had its funding ripped from them leaving them barely operational? And can you sit idly and watch as those who make over $400K a year get a $1B tax cut?

This is happening in my home state of NJ. In the past, NJ was a leader in autism services and has an official state autism registry. People move here for the services. We have the highest autism rate in the country -- 1 in 84 children. And now we have even less services for this growing population which includes my daughter. The new governor, Chris Christie, is cutting $12M to Early Intervention, which supports disabled children under the age of three with services. He is cutting $1B from the NJ school districts, leaving some districts with no choice but to lay off teachers and cut programs. He is forcing teachers to take pay cuts and take percentages out of their paychecks for benefits. He is vilifying the unions. He is also cutting aid to disabled children, which will hit the poor and middle class especially hard. He is however, offering those who make over $400K a year a tax cut.

And it is heart breaking.

But as greedy Americans, we are solely concerned with how things affect us. A lot of New Jerseyeans are happy with their state taxes not increasing. But for those with children on the spectrum, we wonder what is going to happen to our children. What will happen to the many other autistic and disabled children in the state? What will happen to the school children who now do not have after-school programs and whose classes now have 40 children and one teacher? How will these children survive? And what worries me, with a state autism rate of 1 in 84, how can we gamble away the future on tax cuts for the rich?

All these questions and no answers. I feel angry. I feel betrayed. I feel like the entire state of NJ is so selfish and greedy. I've heard people applaud these cuts and laud the governor for being "tough". But you know, I paid my taxes all these years. I was a good citizen. I never relied on the state for anything. I pay a high cost share for my daughter's services knowing that it is a lot less expensive to pursue it privately. And now, when my dear daughter needs treatment, there is nothing to help her but a watered-down, broken system which is soon to be obliterated financially.

And the rich need a tax break, says the governor.

I fear for my daughter's life. I am filled with sadness and fear. Will she ever tie her shoe? Will she be able to be in a class with typical children? Will she ever be able to go to the store by herself? Not unless she gets treatment now. And it looks like it is not going to happen in the state of New Jersey.

Apraxia and Developmental Update!

2010-04-08T13:22:00.000-07:00

Yesterday, we took Ava to a new developmental pediatrician in Manhattan. She is a "guru" of sorts and is known for her very detailed reports. She also runs an autism school in NYC. Ava was evaluated for 2 hours and then we had a 90 minute consultation with the doctor.

Ava scored frighteningly low on every developmental category with the exception of gross motor skills. I credit the physical therapy sessions she had at Hackensack Hospital for her improvement. In gross motor, she scored like a 20 month-old child. It was a big improvement over the last time she was evaluated. But all the other developmental categories remained the same. For cognitive she is at the level of a 17 month-old, for receptive communication a 4 to 10 month-old, for expressive communication, an 11 month-old and for fine motor skills, a 10 month old. As a parent it is hard not to panic.

I wish I had seen this doctor sooner. The doctor recommended intense therapy and a lot of it - 25 to 30 hours per week. We've heard this before - namely from the executive director of one of the best autism schools in the country. If we had seen this doctor six months ago, Ava would have had a plan of action that would have put her on the right path to recovery. Right now, she is floundering after six months of treatment by Early Intervention. What are our other options?

I called the Outreach Program administered by a local autism school. The cost? $8,000 per month -- and that does not include speech or occupational therapy. Who can afford that? Certainly no one middle class! Not even the wealthy! I know families who have gone privately and it is crippling.

So we are stuck with state services. There are good state-hired therapists, but the state does not want to give out service hours. They balked when I asked for 20! So what do we do? How can we get our daughter treated? And if the state gives us more hours, will the therapists be reliable and committed and not cancel all the time?

Who is willing to treat my little girl? Who will give us the hope that she can recover? We have hired an advocate to help us and we have a meeting with the state in a few weeks. My stomach is in knots already.

Anti-depressants and Autism

2010-04-07T19:33:00.000-07:00

I think I mentioned before that Ava has problems with sleeping. She has night wakings...sometimes up for 2 or 3 hours in the middle of the night.

I asked Ava's new developmental pediatrician about this night-waking phenomenon and she said it was neurological. She told me 9 out of 10 autistic kids have issues with sleep. Ava can go to sleep, but has trouble staying asleep. Her brain turns on and won't turn off. She needs to be treated with medication.

So the doctor prescribed a medication called Remeron. It is an anti-depressant. Side effects are hallucination, increased appetite, nightmares and confusion. I stayed up all night because I was afraid of the side effects. Ava slept 12 hours straight. WOW. She woke up very agitated. She babbled like a madwoman, stimmed her face off all day and cried at the slightest little thing. She took a 2 hour nap and then was fine.

However, I called the doctor and told her of the side effects. Ava was taken off the meds and will be on new meds tomorrow.

World Autism Day - Friday, April 2nd 2010

2010-04-01T19:56:00.000-07:00

As I settle down from one of my most trying days as a mom with a child on the spectrum, I just saw a picture of the Empire State Building lit up in blue for World Autism Awareness Day. It looks beautiful.

I have a blue outfit picked out. I have one for Ava as well. We are sporting blue tomorrow.

So we wear blue. The Empire State Building is blue. The city of Toronto will be blue. The Sears Building will be blue. Lots of buildings will be lit in blue.

Then what?

Wearing blue will raise awareness. Because people are CLUELESS. If it does not touch someone's world, odds are, they know NOTHING about autism. It's not until autism smacks them in the face do they know anything about it. It's not until autism is left on their doorstep do they recognize it. And sometimes, even then, they don't.

I am hoping with all this energy focused on autism and gaining awareness that the federal government recognizes this spectrum disorder as an epidemic. I hope there is more research for a cure as a result. Wait, forget that, I want there to be a cure. Period.

I wish autism was not in my life. I wish I did not have to deal with it every day. I wish I was not so exhausted by it. I wish I didn't hate autism SO much. I am so aware of it, I live and breathe it every day.
But having autism in my life has made me more aware of many things. It makes me really appreciative of small things. It makes me think of the future a lot more than I used to. It has made me treasure all the small things I probably would have overlooked.

So tomorrow we wear blue. Blue is an appropriate color for autism. Blue is not happy. Blue is melancholy. But blue is also peace. Maybe wearing blue will bring peace to all those affected by autism.

I WANT TO FIRE EVERYONE!

2010-03-31T08:05:00.000-07:00

Last week I was at my breaking point. This week I feel like giving up. I want to fire everyone.

Early Intervention, although we are fortunate to have such a program in NJ, is a difficult system to navigate. It does wonders, but it is flawed. Very flawed.

When you have a child on the spectrum, your options for treatment are slim to none. If you have millions of dollars, you can hire a private team of therapists and a coordinator to oversee your child's care. When you are poor, you can get Medicaid and pursue your child's treatment with providers who honor Medicaid (if you can find one!). If you are middle class, your only option is to second mortgage your house, get money from rich relations or go through the state's Early Intervention program. However the Early Intervention program is based on an educational model rather than a family model. It is designed to help a family learn and cope with autism (or any disability) rather than cure or treat an individual. Now why would I want to maintain her autism? If she is so young and quite possibly can be recover with intense treatment, why would I not pursue that avenue?

Ava's therapists are all wonderful, well-educated and compassionate professionals. I like them as people as well as therapists. She receives 18 hours of ABA therapy a week from four different therapists. Ava's team leader had to leave because of complications with her pregnancy. We got a new team leader who has a different ideology, but is still true to Ava's program. Ava's new team leader is enthusiastic and compassionate -- she already has had a great effect on Ava.

I used to manage a team of young adults when I worked at a gym in Brooklyn. It was a horrible job and I hated dealing and supervising people. I became an actor because I take direction well -- not because I wanted to be a control freak and boss people around. I vowed I would NEVER manage people again. But lo and behold, now, I am managing a team of five people - her four ABA therapists and an occupational therapist. All of them cancel sessions for various reasons and make-up sessions do not seem to be a priority. I have to manage Ava's schedule like a secretary for a high-powered boss. She has very little open windows of time. She naps. She eats. She is two years old. I am overwhelmed and discouraged. One mom told me, "you are going to have to be a hard-ass, Kim." That turns my stomach. I have to keep people in check? Constantly? Why can't people just be accountable and trustworthy -- and do their jobs.

Lately the cancellations have been getting out of control. In any given week, 2 or 3 therapists may cancel. To date, she has never gotten a full week of the allotted therapy hours she is to be provided. I wonder how this affects her recovery or possible recovery. I wonder if this is doing her any good -- or is all this time wasted. Consistency is key for an autistic child -- and she is not getting consistency.

So I complained to their supervisor, something I hate to do. And I was promised of more of an effort to curb cancellations and perform make-up sessions immediately. Well, so far, one therapist canceled the entire week due to vacation and one other canceled due to illness. Here we go again!

Why can't I get people who want to treat my daughter? Why can't I get a full commitment out of anyone? Why can't people be accountable and reliable? I pray for the day when autism is treated like any other disorder and proper treatment is available to all autistic children - not just the very rich and very poor. I shouldn't have to beg for treatment hours or settle for sub-standard, inconsistent treatment for my daughter.

Ava Wants a Cracker!

2010-03-27T20:13:00.000-07:00

In Trader Joe's the other day, Ava pointed to a box of her favorite crackers -- tiny organic crackers that look like a mini Ritz cracker with cheese in the middle. She likes to pull it apart, eat the cheese and throw away the cracker. I took the box off the shelf and she pointed at it again. I pulled one out and said, "Cracker? Ava wants cracker?"

And she looked at me and said, "Cracker". It sounded a lot like "quack-quack" but it was "cracker".

I kissed and hugged her. I squealed, "Good girl! You said cracker!" Ava ate her cracker and then said it again, "Cracker!"

A woman came up to me and asked me, "Did your daughter say cracker for the first time?"

"Yes!" I said, "I am so proud."

"I know how you feel, it is so wonderful when they say a new word. Good for you, baby girl!"

Now, I am sure this woman did not know Ava was autistic and non-verbal, but the woman seemed genuinely happy for me. I was beaming. FINALLY!

I know parents of typical kids rejoice in their children's accomplishments. I now know how happy they feel - how filled with pride and joy. I was also filled with hope. The day before Ava said, "want bubbles". She even started calling me "Mama". I feel she is on the precipice of speaking. I know she can do it.

In the back of my mind is a fear, however. Autism is so enigmatic. One day a child is advancing leaps and bounds and the next day, they can move backward. I've seen Ava lose skills and words before -- and I hope "cracker" does not have the same fate. I am clinging to the hope that she continues her upward climb.

So, I bought three boxes of those crackers.

"WANT BUBBLES!"

2010-03-26T05:37:00.000-07:00

As a parent of a child on the spectrum you hang on to hope. Sometimes hope represents one word. As I hear parents of typical kids brag over the fact that their kids can recite the Gettysburg Address or wax poetic over their mini walking Wikipedias, yesterday, I get over-the-moon excited that Ava blurted out "WANT BUBBLES!"

She has been saying "bubbles" intermittently - usually when I give her a bath and she wants a bubble bath. I make her ask for bubbles and she may or may no say it. But yesterday in therapy she was reaching for the bottle of bubbles, the therapist asked her, "what do you want?" and Ava looked up and said "want bubbles!"

It's as if the clouds parted and angels began to sing. It's like a first step, the first smile, the moment of birth all over again. My non-verbal child, who lost all language at 15 1/2 months, spoke. It's our Helen Keller "waa-waa" moment. It is our moment of hope.

I hang on Ava's every utterance. She babbles her own language but cannot force real words out. "Want bubbles" was music to my ears. "Want bubbles" opened a very heavy, hard-to-open, silent door. I immediately fantasized about what she would say next. I called my husband to tell him. She was not just repeating, she was answering a question and indicating what she wanted. We rejoiced and felt as if a large weight had been lifted. Maybe now, she will emerge from her silence. Maybe.

And by the way, she got her bubbles!

Welcome to Holland by Emily Perl Kingsley

2010-03-24T14:48:00.000-07:00

This is a poem that someone sent me -- I think it was written in 1987 and seems to circulate amongst parents of special needs kids. It is hard for me not to cry reading it, because it is so true.

WELCOME TO HOLLAND

by
Emily Perl Kingsley

c1987 by Emily Perl Kingsley.
All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Health Care Reform Bill and Special Needs Families

2010-03-22T17:45:00.000-07:00

Frankly, I do not want to hear anything negative about the Health Care Reform Bill. It will go in one ear and out the other. I do not care if you are a Republican, Democrat, Libertarian or a-political. I do not care if you love Barack Obama or extremely dislike him. The Health Care Reform Bill directly affects my daughter and millions of children like her.

Personally, I think the bill can do more. I do not think it does enough to cover ALL Americans and I wish it was not laced with anti-choice legislation. However, it benefits my daughter and other special needs children like her. I do not even care how it will affect me. This affects my daughter positively.

Hey, it may be selfish on my part. It may be opposite to others' political beliefs. It may not be your ideals. But it helps my daughter and the millions of other children like her. It means that autism treatment will be covered nationally - saving families tens of thousands, possibly hundreds of thousands of dollars. It means my daughter will not be discriminated against or rejected by an insurance company based on her disorder. It means that children like Ava can get the treatment they need - opening the door for more awareness and acceptance. The urgency for a cure will become greater. Research will be encouraged.

The Autism Society released a statement outlining how this legislation will affect families with special needs children. I applaud this legislation for that alone. Ava is my heart and soul -- and knowing that this legislation will help her, makes me happy that this bill was passed.

Autism Society of America: Health-care Reform Bill Passes Both Houses

Does Autism Have a Stigma?

2010-03-22T13:59:00.000-07:00

As I sat in my dining room last week after my IFSP meeting, I was numb with disbelief. I could not believe that treating my daughter, a toddler, who has autism, was not considered important to my state service coordinator. Why does no one want to help her turn this disorder around? Is she so far gone? Is she a lost cause? I don't think so, but maybe she is.

If Ava has any other disease or disorder - diabetes for example, she would be treated with compassion and a solid medical plan of action. But autism carries baggage. There is no crystal ball, there is no cure, there is no blood test to make it seem real.

I remember the AIDS crisis in it's infancy. Two good friends of mine contracted the HIVvirus in he mid 1980s and died within a year of diagnosis. It was a horrible, painful death for both of them with so much suffering was endured. What was most disturbing, was that people were uneducated about AIDS then. I remember nurses refusing to come into my friends' rooms. I remember doctors not wanting to treat them. I remember people were afraid and their illnesses were "covered up". I think both of them would have survived if they were diagnosed today - given the advancement in AIDS medications and care. But both of them died too soon. In fact they would be alive today if the advances and acceptance came sooner.

Is autism the same? Does it have a stigma? It makes the government afraid or my daughter would be given the best treatment available without questioning me as if I was a nut case begging for the unattainable. It has a stigma in society -- no one knows what autism is. No one is hard-pressed for a cure or research unless they have a child with autism. And insurance companies are afraid of incurring the costs associated with autism. Families are afraid too -- some families stick their heads in the sand and hope autism just goes away.

A mom of an autistic first grader advised me NOT to disclose Ava's autism to any stranger. She said, "say she has some issues or needs some speech." I chose not to be in the closet with Ava's autism for a few reasons. I want her to be accepted and acceptance starts with awareness. I want people to know that autism affects many different types of children - even as young as 2. I want parents and pediatricians to be aware and on the lookout for import signs and behaviors. I want autism to be treated medically with affordable, reliable treatment. So keeping Ava's diagnosis a secret is not a position I wish to take.

However, I do not want autism to hold Ava back. I want her to be challenged and I want her to think of herself as a perfectly typical child, teenager and adult. I want her to be aware of others with disabilities and feel compassion and look at typical kids as peers as well. I know putting a label on her may discourage her -- but way back when - dyslexia was considered a stigma. Now it is treatable and not considered an unconquerable disorder.

I hope one day autism is understood. I hope one day autism is not a word to be afraid of. I hope one day autism will be treatable. But until then, I will consider autism a word that helps me understand my daughter and the way she thinks, behaves and learns. And the rest of you are going to have to get used to it.

Autism is Unaffordable Financially

2010-03-18T06:35:00.000-07:00

Holly Robinson Peete, a wonderful actress, model and mom wrote a great article for Huffington Post on the Eight Facts About Autism Not Covered by the Media. See link below.

I cried with agreement reading every point. What struck true to me most was the fact that "Autism is Unaffordable". Proper private therapy, if you are very wealthy, is extremely expensive. At $100 to $150 a session, 25 to 30 hours a week, we are talking $7 - $10,000 per month. If you are middle class, it is impossible to afford and if you are poor, it is unattainable. I know people who have taken out second mortgages to pay for therapy. I know others who hire lawyers to try to get state aid. I know some people who give up and surrender to the fact that their child will never be able to function in typical society because therapy is out of their reach. And that is just the financial obstacle.

What about accessibility? How many good, trained ABA therapists are there? How many of them are overbooked or have 25-30 hours to spare? How many autism schools have outreach programs to accommodate children under 3? How many openings are there in programs of that kind? Not many. The demand is very high.

And state early intervention programs, like the one we have in NJ, are not designed to help "cure" a child. They are educational models designed to instruct the families on how to help the child until he/she reaches school age when the education is taken over by the school district at age 3. Therapy hours are hard to come by. Therapists are not always the best, but there are some great ones. The organization and effectiveness of the program is lacking and the administration can be horrific. I have three state agencies overseeing my daughter's therapy. They argue with one another, they don't always do their jobs and they are scrutinized for giving out too many hours. In NJ, early intervention is not free -- we personally have a very high cost-share payment, but not nearly as high if we paid for therapy privately.

But I ask - WHY is it so difficult to get treatment for this disorder? Why can only the extremely wealthy afford it? Why, with a national autism rate of 1 in 150 is treatment not covered by health insurance? Why isn't treating this disorder considered a priority? What is going to happen to this generation of children that are going untreated or under-treated?

It is so frustrating for a parent - being thrust into this world -- to make sense of the apathy and lack of education surrounding this disorder. You feel your child will be destined to be lost forever.

8 Facts About Autism the Media Does Not Cover by Holly Robinson Peete

The Need for a Federal Autism Coverage Mandate

2010-03-14T16:42:00.001-07:00

For those of you who do not have a child with autism, ask yourself "what would I do if my child was diagnosed with Autism Spectrum Disorder"? Most of you would seek treatment - as soon as possible. Most of you would want the best and most effective, scientifically-proven method of treatment for your child. And some of you would seek alternative treatments - any means of possibly "curing" your child of this disorder. A disorder so few people know anything about.

But most of you would find out that ANY treatment for autism is very expensive, difficult to obtain and not covered by insurance companies. In some states, autism treatment and diagnosis must be covered by health insurance providers. However, the terms in which it is covered is very vague. For instance, in my state of New Jersey, autism treatment up to $36,000 per year must be covered by private insurance policies bought in New Jersey. If you work for a large company that has it's own insurance policy, this law is not applicable. If you work in New York or another state that does not have mandatory insurance coverage and you live in New Jersey, it is not applicable. If you are one of the lucky ones (like us) that have a policy bought in New Jersey, you are covered, however there is no clarification in the mandate which defines co-pays, in/out of network practitioners or deductibles. So I can take Ava for therapy and be charged a $50 co-pay per session as outlined in my policy. If she needs 25 hours a week, that is $1250 per week. And most practitioners do not take insurance so a family will have to pay the provider up front and then wait to be reimbursed, if they are reimbursed.

There is currently a bill in the U.S. Senate and House for comprehensive autism legislation, including a section addressing broad based federal autism insurance reform. We can thank Representatives Mike Doyle (D-PA), Chris Smith (R-NJ), Eliot Engel (D-NY), and Hank Johnson (D-GA) and Senators Richard Durbin (D-IL), Senator Robert Casey (D-PA) and Senator Robert Menendez (D-NJ) for introducing this legislation. Whether you stand on the right or left side of the aisle, you cannot deny that the autism population is growing -- 1 out of 110 children are diagnosed with autism.

The “Autism Treatment Acceleration Act of 2009” (ATAA) contains a total of twelve sections, each putting forth a different program for autism. Section 12 of the bill has the provisions for federal reform of autism insurance coverage. If passed, it will require all insurance companies across the country to provide coverage for evidence-based, medically-necessary autism treatments and therapies.

Once we have this insurance coverage, making it affordable for families to have their children treated, we have to make a national effort to treat autism. We need more practitioners, trained therapists and mandatory screenings for children under 2. We need more education and public awareness. It is sad that most people have no idea what autism is, or what to look for until their child is diagnosed.

I urge you to contact you senators and representatives, urging them to support ATAA. We need treatment for our children - and whether you are wealthy, middle class or poor, the costs involved in treatment are exorbitant and difficult to aquire.

Losing Socialization

2010-03-13T20:03:00.000-08:00

I took Ava to a birthday party today. Her two friends, a set of twin boys, turned 2. They are the cutest little guys -- I just want to squeeze them every time I see them. Both are so smart, and so loving. And they dig Elmo big time.

We went to one of those huge kiddie party places - complete with hundreds of screaming toddlers, a sand pit, baby dolls, a kitchen set up, a fake grocery store, slides, a Habit-trail type maze and little cars and ride-on toys.

Ava was fine for the first half hour -- although she kept putting the fake fruits and vegetables in her mouth. She went down the slide a few times. She played with baby dolls and the kitchen set. I toyed with the idea of putting her in the sand pit, but I knew most of it would end up in her mouth or her socks. No thanks!

After about forty-five minutes, Ava started to withdraw. I noticed that Ava does not tantrum, she withdraws. She gets very quiet and just wants to be held and be hugged. She did not want to walk around anymore or play, she wanted us to hold her and squeeze her tight. It was a rainy day and there were a lot of people there.

Ava does not eat pizza, so I gave her a lunch of snap peas, ravioli, olives and fruit. She would not drink out of a cup, so I gave her a sippy cup of water. Ava had a hard time sitting in her chair and was constantly sliding down.

We left shortly after we ate, which was fine because we needed to go home for Ava's 1pm therapy session. What disturbed me was, I noticed that Ava is becoming more and more anti-social. I always took comfort in the fact that Ava loved children. She loves to run up to kids, hold their hands, hug them and walk with them. She sometimes stims when she sees a kid she likes -- opens her mouth wide and tenses her fists. But now children are invisible to her. I had a playdate two weeks ago with another little girl and Ava barely looked at her.

I wonder she is losing her socialization or she is reacting to the incidents where we've had to steer her away from children (mostly parents) who did not welcome her friendliness. A few weeks ago at nursery school, a bratty kid stole a toy from Ava and another little rat would not let Ava hold her hand. A few other kids ran away from Ava when she went near them. At a restaurant, a few weeks ago, I had to guide Ava away from a little boy whose parents looked disapprovingly when Ava approached their son. At nursery school the other mothers do not encourage their kids to play with Ava. I can't help but think Ava feels that she is not supposed to go near children.

The other part of me thinks she is regressing socially. The last holdout of normalcy is leaving her. I know she is advancing in other areas, but to lose socialization is critical. Her therapist suggested that I have a playdate with a therapist present so we can guide Ava into socialization and encourage her to acknowledge other children. I am going to try a playdate -- and hope Ava regains her social skills.

IFSP update

2010-03-12T08:40:00.000-08:00

How do you feel when someone says they cannot help your child - after you've asked for help and have no where else to turn?

I felt like I was kicked in the stomach.

Last night, we had Ava's IFSP review. My service coordinator, employed by an agency hired by the state along with Ava's team leader, who is employed by a different agency, attended. We went through Ava's progress and noted how she was or was not progressing in certain areas. At the conclusion of the meeting, I asked for more hours of ABA therapy.

Ava currently receives 15 hours of Applied Behavioral Analysis therapy. It is recommended by many experts and doctors that she receive 25 - 30 hours of treatment at this critical age. I wanted 5 more hours to make it to 20 hours. My service coordinator tried to convince me that an increase in hours was not necessary. I should not listen to the experts. I work with her at home too and that is enough.

Then she said. "We cannot help you."

I started crying. I could not help it. All I heard was that they were abandoning my child and her journey to recovery. I knew my husband would be upset. I felt like I was so tired (I had been up since 4am) that I had no energy to yell, scream or throw a tantrum. I was defeated.

I was not asking for the world. I was asking for a few more hours. I pay my taxes. I've been a good citizen. I do not milk the state for what it is worth. I've only been on unemployment once in my life in 1994 after I lost my job at a non profit for budget cuts. Unfortunately autism treatment is not readily available. Even in NJ, where health insurance coverage is mandated, you STILL have to pay a co-pay for each session. Five hours would cost us an extra $200 a week. We do not have that right now. I wish I did. I wish treatment for my child was more affordable and easy to get.

My service coordinator must have felt bad and gave me 3 hours. I understand she is under the gun. I understand the state does not have the resources. It should. Autism is epidemic. But I understand she cannot give out hours at her leisure. I know her agency is scrutinized.

But as a mother, what can I do? Say, OK, it's fine. My daughter may not be able to tie her shoe when she is 15 because she did not get the proper services now, but it is OK. My daughter may never call me "Mama", but that's OK. I think about all the waste and the people sucking the system dry and I get so upset. Yes, Charlie and I are not paupers. But we live check to check. We are not extravagant. Things are not so important to us. The economy is not so great that Charlie can make a lot of money right now. And I can't go back to work because I cannot cover the cost of daycare and coordinate Ava's therapy.

So I am numb today. It is a dreary day outside - cold, bleak, raining. I know I got something for Ava, even though it is not enough. But I will continue to try.

Eyes Wide Open!

2010-03-10T19:54:00.000-08:00

My eyes were opened again the other day.

Ava's IFSP (Individual Family Service Plan) review meeting is tomorrow. Her initial IFSP meeting was in September where we went over the goals the Early Intervention evaluators laid out for Ava based on her assessment. She was allotted 5 hours of therapy initially. In January, I increased her hours to 15. Tomorrow is her six month review. I will be asking for more.

Originally, I was not going to ask for more hours. I thought that 15 was enough right now. I am frustrated dealing with her six therapists. Every day one of them has an issue. It is a full-time job to coordinate them. It reminds me of when I managed a fitness center in Brooklyn. I had a staff of 25 people and every day one of them had an issue or called in sick. I vowed to never have a job in management ever again. Well, now I have the lowest paying management job ever!

Another mom with a special needs child opened my eyes the other day. She told me to always ask for more hours. She was successful in getting her son the services he needs. She gave me a lot of tips and pointing me in the right direction. The years before the age of three are so important because Ava's brain is still forming. If I am complacent with 15 hours, Ava may not get all the treatment she needs. She may not recover.

It reminds me of something a very well-respected behaviorist said to me - which I posted about months ago. She said, "G*d forbid Ava had cancer. But if she did, you would want the most aggressive and scientifically-proven treatment available. You would want her to get the best and a lot of it. The treatment for autism requires just as much urgency. You have to give her the most intense, scientifically-proven treatment available - as many hours as possible." Autism is such a puzzle and we have no cure. But we do know that early treatment - and a lot of it has great results.

I don't understand WHY it has to be such a fight. I don't understand WHY the state organization is being stingy with the necessary treatment that can help save my daughter. I do not understand why treating children with this disorder is not a priority. Why should I have to fight so hard? Shouldn't it be -- "oh your kid has autism, we will treat her right away to conquer this disorder!" I have to beg, plead and cry to get her treated. And I live in a state which is progressive when it comes to autism treatment and awareness.

We shall see how my service coordinator reacts to my request. I want 20 hours, Ava currently has 15. She will most likely say no. Cue crying. Unfortunately, Charlie won't be here for the meeting. I know she will listen to him. Everyone listens to him. He has that crazy look about him, I think.

To Be Continued....

Ava Speaks

2010-03-08T19:11:00.000-08:00

Every parent gushes over their child's first words. It is so exciting to hear a little one verbalize his or her communication. They finally connect with us on our level.

Ava's first word was "duck" when she was 12 months old. At 15 months, she said about 6 words. "Quack quack", "ladybug", "Abbey", "hi"were all a part of her repertoire. At 16 months the words were gone. She once was calling me "Na Na" or "Ni Ni" -- and then called me nothing and stopped making eye contact.

Now, at 25 months-old the words are coming back! She calls me "Ni Ni" and my mother "Na Na". Sometimes she says, "Mama". She calls her father "Da-da-dee". She calls my mother-in-law "It-uh" which is her interpretation of "Sitto" which is arabic for "grandmother".

Ava says "duck" again - and "quack quack" whenever she has a duck in her hand. She also says "baa-baa" when she plays with her toy sheep. She also says "squeeeeeeze" when you give her a squeeze or when she squeezes a ball.

She says "this" when you ask her to choose something.

And today, when the teacher at nursery school told us she was going to turn on the bubble machine Ava said, as clear as a bell, "BUBBLES"!

There are not too many words in her repetoire, but for a child on the spectrum, this is a big step in the right direction.

Now, I am gushing. I had to call my mom today to tell her Ava said, "BUBBLES!"

However, even with her verbalization increasing and getting better I see how far she has to go. Today at nursery school Ava would not sit at the table and engage in making a craft. She wouldn't eat her snack or listen to a story. All the other children, who were mostly younger than she, were able to sit, take directions and participate. Ava's therapist and I had to sit with a timer and make Ava sit for 2 minutes at the table. I handed her treats to reward her for being attentive. After two minutes, she was allowed to get up from the table and take a break. After a few minutes we'd bring her back to sit again. All this was done with a lot of crying and protesting from Ava -- and me. I saw the other moms looking at me, looking at us and wondering what we were doing with the screaming child and the timer. I felt exposed and embarrassed.

But her increased vocabulary is hopefully the tip of the iceberg. Hopefully she will add a lot more words in the coming months.

Son-Rise

2010-03-03T19:56:00.000-08:00

Does anyone remember this made for TV movie from 1978?

It was my first introduction to autism. I read the book in my 6th grade English class and saw the movie on television. It was based on the true story of Raun Kaufman, a little boy who was "cured" of his autism. It was such a powerful movie at the time. Now it seems so dated, the music is sappy and the dialogue is so insipid. The scenes of the actor playing Raun Kaufman spinning the plate and staring into space are the images I thought of when I heard the word autism.

That movie is 30 years old and the book is a few years older. I cannot get over that NOTHING has changed! Autism is still a mystery. Parents are still trying to find answers. We still know very little about autism.

Go on You Tube and try to view the entire movie. You will see how little has changed in 30 years.

Afraid of Autism

2010-03-03T19:19:00.000-08:00

I have written several posts about how isolating autism can be for a parent. When your child is diagnosed, your world changes. Your perspective changes. Your life is now different. You still have the same child, but you enter a new world you were not prepared for. Whatever plans you have made are now changed. We are talking major upheaval.

It is particularly hard for me when I sense that people treat Ava or regard Ava differently than they did before. But let me say, for the most part, people treat Ava the same. 90% of people treat Ava no different than before. For example, my "mommy group" has been so supportive -- and they all see Ava as a fellow playmate. None of our play dates have changed because Ava has autism. It is playtime as usual. Sure, Ava does not have the time to play like she used to, but they ALL have been so wonderful and accommodating. However, there are others, some who are very close to Ava, who have known her since the day she was born, who look at her differently since her diagnosis.

They are afraid of her. They are uncomfortable around her. It is evident.

It really disturbs me and I have tried my best to educate people about Ava's condition and what we need to do to communicate with her and help her learn. But bottom line: they love her, but they are afraid of her. They worry about her. They do not know what to say or do. They are uneducated -- just as I was.

I do not blame anyone for feeling cautious around Ava. Autism is a puzzle. Autism is confusing. Autism is unknown. People have no idea what it is. People have no idea what causes it. People cannot put a finger on it. The images we conjure up when someone says "autism" are of Dustin Hoffman as Rain Man or the kid rocking back and forth in a corner from that 1970s TV movie, Son Rise. Not every autistic child is like Rain Man, some are like Ava and others are completely different.

The only thing I can do as a a parent is educate everyone I come in contact with. Every family member, friend and stranger who comes into my sphere of influence will be educated about autism. In the beginning I was embarrassed to tell people that Ava was autistic, but now I am not. We need to amend our perceptions of autism so these individuals will have a kinder, more livable world to welcome them. Autism is not a stigma -- but it is nebulous.

I just hope people stop being afraid and open their hearts to those who have autism.

Autism Early Detection PSA

2010-02-28T20:37:00.000-08:00

I would like to add an additional slide to this video:

"I am 16 months and the words, eye contact and social skills I had are now gone."

Ava had all those skills mentioned in the PSA -- and at 24 months, she does pretend and verbalize. However, she had a complete regression at 15 1/2 months, which is also common in autistic children. Sometimes people say, "oh, my baby smiles at me" and dismiss the other signs of autism like regression.

But the heart of this message is clear, EARLY DETECTION is so important.

Temple Grandin: The world needs all kinds of minds | Video on TED.com

2010-02-27T20:16:00.000-08:00

My friend Alicia sent me this link to a speech given by Temple Grandin recently about the autistic mind. She is such an amazing speaker and has really helped me understand my daughter's autism. I communicate with Ava differently because of Temple Grandin.

Temple Grandin: The world needs all kinds of minds | Video on TED.com

Snowmaggedon!

2010-02-27T18:59:00.000-08:00

I think we've had about 100 snow storms this year. It feels like it. Some people love the snow. I hate it. Even as a kid, I hated it. It was fun to have a day off from school, but I found snow to be boring and cold. I hate everything associated with snow - the coats, hats, boots, gloves, over-heating, runny nose, red face -- ugh. I would much rather be in the sun. The only good thing about snow is that there are no bugs in it.

So it snowed for two days straight. We got about 24 inches and lost power and heat for almost 12 hours. All of Ava's therapy was canceled for two days. She was happy, but I am worried that she will have a hard time easing back into her busy schedule.

I have been asked by many people, "Does Ava like the snow?" I never took her out in it. Ever. I hate bundling myself up - let alone getting her dressed. I did buy her a beautiful snowsuit from Hanna Anderson last fall, before she was diagnosed. It is very thin, very comfortable and not bulky at all. It sits in her closet, collecting dust, because I could not bring myself to putting her in it. But after this big storm, I decided to take a leap of faith and take her out in the snow. I thought I was being a bad mother by neglecting to give her that experience.

I dressed her in leggings, top and a fleece pullover and tried to put her in her snowsuit. She actually got in it OK, it is very roomy and not constricting at all. But when I put the hat on her head and put up the hood, she did not like that at all. And the boots freaked her out. I ditched the gloves, she kept pulling them off. We took her outside screaming. Charlie tried to get her to touch the snow or hold a snowball - she just clung to him and cried. I called off the torture session and we took her inside and quickly undressed her.

So the answer to the question is: "No, Ava does NOT like the snow." And neither does Mommy. I am not going to subject her to any more unreasonable punishment. She can look at the snow from inside the house.

Restore $155K cut to Autism New Jersey's DDD Grant!

2010-02-23T13:30:00.000-08:00

This is URGENT! For anyone in NJ, please sign the petition and contact your representatives. Governor Chris Christie is going to cut the funding for one of NJ's most essential organizations. Autism NJ was integral in pointing me in the right direction after Ava's diagnosis. We've received so much information and support from Autism NJ. With a statewide autism rate of 1 in 94, how can we cut funding to organizations like this? Autism is epidemic in NJ and we have the country's best autism services. Let's not turn our back on kids like Ava, whose parents desperately need information, counseling and services.

Restore $155K cut to Autism New Jersey's DDD Grant!