Then & Now

I love this picture of my mother and I.  It was taken in 1968 right after Easter.  I think Ava looks like me in that photo, and I look a lot like my mother.  My mom was a LOT younger than I was.  In fact she is about 20 years younger than I am now in that photo.  She looks practically the same, by the way.

Ava's First Day of "School"

Ava had her first day of class today.  I am taking her to a local private "nursery" school which accommodates special needs children.  Since Ava will be going off to school in a year when she turns three, in order to prepare her, I am doing a "Mommy and Me" class at a local nursery school and bringing one of her therapists to incorporate ABA principles in the class.  This class is geared toward transitioning Ava into a class where she will be separated from me.

When I got to the school, Ava's therapist was waiting there for us.  Ava was happy when we approached the school - I have been taking her to the "open gym" times so she can get used to the room.  She loves it and has had a lot of good experiences thus far.  When Ava spotted her therapist, she immediately began to cry, anticipating that I would be leaving her with her therapist.  I did not intend on leaving Ava, but I will work on that separation once she is comfortable in the class.

Ava cried for the first 20 minutes.  She clung to me and cried louder every time her therapist spoke to her.  She wouldn't play with the toys or listen to the teacher. However, when we all got in a circle for story time, Ava became calm and listened to the story.  She liked the big picture book about spiders that the teacher was reading.  We sang a few songs and then went to the table to do our "craft", a spider made out of egg carton and pipe cleaners.  Ava got to paint with a brush for the first time.  She liked it.

After our craft we moved into the gym, where she previously had "open gym" sessions.  I was looking forward to this because she loves the gym.  However, when we went into the gym everything was switched around.  They moved all of the equipment so the room did not look the same.  Cue: FREAK OUT.  Ava was scared and buried her head into my legs.

"Oh we changed the room around to mix it up a bit"

Great!  I thought.  This is PERFECT for an autistic kid.  I look forward to the ONE thing I know she likes and they change the layout of the room!  Didn't they realize this would set my kid into a tizzy?  Ava eventually calmed down when I led her to each piece of equipment and reminded her that she liked it.  She went into the ball pit, down the slide and on the trampoline.   She was happy.  Then we took out the parachute and Ava sat in the middle as we spun the kids around and flapped the sides to create "waves".  Ava loved it - as opposed to her previous exposure to the parachute at Gymboree.  We sang her favorite song, "Ring Around the Rosie".  The teacher put on the bubble machine and Ava was in heaven.  She stood under the bubble machine and got drenched in bubble juice.  

We went back into the classroom and Ava was enjoying herself.  She found a box of dinosaur figurines and fell IN LOVE.  She loved sticking her fingers in their mouths and making them kiss one another.  She wouldn't finish her craft because she was transfixed on the dinosaurs.  She would not eat her snack either.  Although she did steal a goldfish so she could feed one of the dinosaurs.

We left and she was happy.  It turned out OK.  Although the teacher mentioned that we may switch rooms next week.  I was disappointed to hear this because Ava will be confused AGAIN.  Why are they throwing her so many curveballs?  Don't they realize this sends her into confusion and fear?

All in all, I think that in the coming weeks Ava will get used to the class and have fun.  She did like her fellow classmates, too!

I watched Temple Grandin

I watched the HBO movie, Temple Grandin, starring Claire Danes as Temple and Julia Ormand as Temple's mother.


I am not going to review the movie because I have too much emotion attached the to the subject. I thought, and I am overly critical of acting performances, that Claire Danes effectively captured Temple Grandin.  She was extraordinary in her role, as was Julia Orman.  Every scene Julia Orman was in, I cried.  I so identified with her character.  In one scene, Temple's mother describes how she feels so alone and that no one understands what she is going through.  I know people sympathize with me but I am not sure anyone who does not have an autistic child can really, truly EMPATHIZE.  I feel like every day I feel my daughter's pain, it sets me further apart from the world.  I feel defeated and challenged every day of Ava's life.  Of course, I acknowledge her successes, but when you do not know the future of your child's life, when there is a remote possibility that she will never lead a "normal" life, the fear of the unknown is crushing for a mother.  And I don't care how many people tell me that they think Ava will be OK, if they cannot guarantee me that she will be fine, it is hard for me to accept.  This is my daughter.


Temple is an inspiration - she is a genius.  She is an educator.  She is a successful woman who has done a lot of good for animal rights and the autism community.  But she is still a person, she is still autistic.   She still has her diagnosis and she still struggles every day of her life with autism.


Of course, throughout the movie, I could not help draw parallels with Ava's condition.  Ava is autistic, diagnosed at 20 months.  Ava loves hugs from humans, Temple does not.  Ava had several words and sometimes has several words, Temple did not speak until 4 years old.  Ava shows affection and love - Temple cannot.  Ava loves different foods and has no attachment to order, Temple does eats only jello and yogurt and requires structure.  Ava loves to play with toys and has a great sense of imaginative play, Temple does not.


But Ava and Temple share a certain similarity -- Ava is calmed by hugging and squeezing same as Temple.  Ava is entirely visual - same as Temple.  Ava cannot grasp the abstract and needs a visual reference to understand - same as Temple.  


In a previous post, I revealed that Ava is extremely stressed with the introduction of more hours and new therapists.  She screams when any therapist enters our house.  She screams when I bring her downstairs to our family room where she has her therapy - even if it is just to play with me.  Ava wakes up in the middle of the night, protests everything from dressing to getting in her stroller - things that she usually enjoyed.  Ava is confused and scared.


Temple Grandin said in an interview that autistic people experience fear more than any other emotion.  I suddenly realized that Ava is stressed out because she is afraid.  And I did not realize that Ava was literally VISUAL until I heard Temple's description of how she sees the world.  Ava does not respond to me yelling for her not to stand on the coffee table or when I call her name to come to dinner.  Ava needs a visual reference for everything.


The other day I yelled at Ava.  I am not a person who yells often, in fact, I do not really raise my voice at all.  We were in the parking garage of the hospital where she has physical therapy and Ava squirmed out of her stroller while I was wheeling her down a hill towards the elevator.  I yelled at her to sit still, but she kept trying to break free.  She did not respond at all to my elevated tone.  I could yell in her face, which I have not done, and it is the same reaction as if I whisper in her ear.


However, I can imitate her favorite character or sing her favorite song and she will laugh and giggle.  Her eyes light up when I dance to a Yo Gabba Gabba tune.  But if I yell or scream in the car at traffic, Ava is appears nonplussed.


This has opened my eyes.  I am finally understanding how my daughter perceives the world around her.  As a person who has made a living on my verbal and written skills, I finally am able to see into her very visual world.  I feel her pain because she is so scared and frightened but I now know why.  I am beginning to understand.

Please Watch Temple Grandin on HBO tonight at 8pm

Trailer

My Stressed Out Little Girl

Ava is stressed out.  

Her therapy hours were increased this week and a stream of new therapists came into our house.  She has four new therapists starting -- and another one who starts in a few weeks.  So Ava is stressed.  She has no idea why mommy and daddy are bringing these strangers into our house to make her do things.

She has been whining and complaining a lot -- even over mundane things that she never protested in the past - getting dressed, sitting in her high chair, her stroller, etc.  She has been waking up at 4am for the past few nights.  She does not cry at first - she plays in her crib.  It is more like bouncing off the walls.  She sings, throws her stuffed animals, jumps up and down and yells.  If I go to see her she is hyper and wired. After a while she starts to cry because she gets lonely or frightened.  Charlie has tried to calm her and put her back to sleep, but she wants to be taken to our bed to be with us.  And she NEVER wanted to be in our bed.  She has always loved her bed.  

Ava also cries whenever anyone enters our home.  If a friend comes over or even family, she cries.  She thinks everyone is a therapist.  She won't go down to our family room, where her therapy sessions take place, even if I take her down there to play with me.  She screams and tries to climb up the stairs.  During therapy sessions she wails and cries.  She went through three boxes of tissues in three days.  

She has been mouthing objects a lot -- something she had almost stopped doing.  Now she constantly chews on her toys, her baby dolls, her puppets and her books.  She is very attached to her binky - something she never really needed or cared about.  She has started to eat inedibles like paper, something she stopped doing months ago.

Ava loves going in the car, because she knows she will not have therapy wherever we are going.  She loves Grandma's house because she knows therapists won't go there.  She loves the supermarket, the mall and anywhere I may take her - because the therapists will not be showing up.  She also loves the upstairs loft - she never has therapy in the loft.

But Ava is no longer my happy child.  She is no longer agreeable and easy-going.  She is upset all the time.  She makes an "angry" noise when she is perturbed.  She bites me -- and only me - when she is frustrated or scared.  She also wants to lay on my chest when she is stressed - for comfort.  She wants to feel my skin and hold my hand.

As a mom, I feel her stress, too.  She can't express her confusion and I feel how upset she is.  When she does not sleep or has irregular sleep patterns, it affects me.  I get irritable and upset.  I raise my voice, something I really do not do at all.  But that does not affect her.  She has no reaction if I yell at her. 

I know some of these things are age indicative.  But this is a personality change.  It is a  stark change caused by her increase in hours and therapists.  Her new occupational therapists has suggested some tactics to reduce Ava's stress - making a schedule board with pictures of what will happen that day, an increase in play time during therapy and introduce massage and calming techniques during therapy.

But now I feel like I am at the end of my rope.  I am so tired and fatigued from a day of battle that I can barely function at the end of the day.  I am hoping for the strength - and for my sweet girl to come back.

No more P/T!

Although she woke up at 4am today, Ava performed well enough to graduate from physical therapy today.  She climbed a few flights of steps, walked up ramps and did all the tasks the physical therapist demanded of her.  We need to go for a re-evaluation in August, but she does not have to go for her weekly P/T session anymore!  Hooray!

She really liked P/T, though.  She liked climbing the stairs, running down the hallways and playing with all the toys and equipment.  The therapist made it a lot of fun and Ava did not feel any demands on her.  Ava looked forward to going there and never protested.  

So now our Thursday mornings from 10:30am to 11:15 are free -- whatever will we do?

More on Meanies...

I started thinking yesterday about why I cannot stand bullying.  I thought back to grade school and high school where bullies ruled the playground.  I was teased and bullied -- although not as much as some of my friends were.  I had a friend, who still is a dear friend, who was bullied and tormented EVERY single day of school.  One bully threw a trash can at him and called him an "expletive for gay person" while the teacher looked on.  He was followed home from school all the time and heckled and tormented at school functions.  I think about the bullies and hope they, as adults, are now enlightened. I hope time and experience has educated them and made them kinder people.  I hope they realize how mean and horrible they were and how much pain they caused.  In some cases, I am sure they were abused at home.  And in some cases, they are still the same miserable wretches.  My friend has yet to receive one apology for his torment, so my guess is that none of those bullies have evolved.


What is most disturbing is how bullying affects children later on in life.  I know countless people who were bullied in school and are still haunted by the tormenting in their adult lives.  It took me a long time to get over the teasing I received.  One boy in high school told me I was ugly from my first day of school until the day I graduated.  I heard Aaron Spelling, the genius producer behind Beverly Hills 90210 and Charlie's Angels, was tormented so badly as a child because he was Jewish that he stopped speaking at age 6.  Bullying traumatizes children and leads to a very insecure adult.  


And why do these young kids - ages three and four -- also bully?  Why did that little girl crash into Ava on the slide on purpose?  Why did the others run away from her?  Was it because they were jealous?  Because she was a baby and perhaps they have younger siblings at home?  Do their older siblings bully them?  Are their parents abusive?  What causes bullying?


I really don't know or care -- but I am looking out for my daughter.  I do not want her to be teased or hurt so much emotionally that it injures her self-esteem and affects ability to function.  She is different.  I know she is different.  I am not sure she knows yet, but I am afraid someone will tell her that.  I don't want kids to run from her, I want them to show compassion and kindness.  But I realize I won't always be there to protect her.  For a neurologically typical kid, you can teach him/her self esteem and self-awareness.  But how do you teach that to a special needs child?  How to you tell a special needs child that bullies are just bullies?


I suppose time will tell -- she is only two.  But I worry for her.  I feel for her.  I so want the world to be perfect, loving and accepting.