Autism? Hold my chocolate milk and watch me firework it!

I have this INCREDIBLE daughter who fills my life with beauty and music. She was diagnosed with Autism at age 4 and honestly by then we weren’t very surprised.

Rose started off life doing everything early. She hated crawling and as soon as she had the upper body strength began pulling herself up and trying to move. She was walking by 7 months holding onto furniture. She was talking clear enough that you could understand her and have mini conversations before she was 1 1/2.

Then around age 2 it was like she suddenly forgot everything. She stopped talking clearly even words and sentences she had been saying regularly. She began having more behavior problems such as being angry constantly whereas before she was the calmest and sweetest little girl. She began hitting herself, her baby sister and others out of what seemed like anger and frustration. She would just suddenly start crying and yelling and the only person who could calm her down was my dad.

We tried putting her in daycare thinking being around other kids her age would help as if this could be a social issue. It didn’t, in fact it made it worse. We tried for 2 weeks then gave up because every day I would get a call from the director saying we needed to pick her up because she wouldn’t calm down, she made herself vomit from getting worked up so much, etc.

For 2 years we kept taking her to the pediatrician only to be told she was a ‘drama queen’, there was NOTHING physically or psychologically wrong to explain the behavior, language and social skill decline.

My parents finally got fed up and found a specialist they wanted us to take her too so we could first rule out any biological explanations for her behavior. Looking back I feel horrible as her mother I didn’t do something sooner but I kept thinking this is a doctor and he knows more than me so why should I question him?

The specialist discovered she had been suffering from untreated ear infections for such a long time her ears were full of scar tissue and she needed immediate surgery or she’d become permanently deaf. There are just NO words to describe how I felt hearing that all those times she had been screaming, banging her head, crying – she was in excruciating pain from the inside of her ears being slowly destroyed by infection and she hadn’t been able to tell us.

The horror over this turned into anger from 2 years worth of doctor visits where I had been blown off as a hypochondriac mother and at the last visit the insinuation was made that CPS needed to talk to me about the proper use of a doctor’s time making me feel like I had been threatened if we brought her again “for no reason”.

She spent her 4th birthday having surgery and recovering which was thankfully successful and restored her hearing so well she is actually a little sensitive to loud noise.

Although her behavior changed in a positive way post-op it was very obvious she wasn’t hitting the psychological development milestones she should so our next step was to have her tested by a psychologist. A few months later the verdict came in – Autism. She was immediately enrolled in a program specializing for kids with special needs who are too young for Kindergarten.

We had the most amazing teachers and staff at the school and I give them TREMENDOUS credit for helping Rose find her way. I was shattered when she aged out of their care because once the school tried to put her into Gen Ed but without the resources she had through her previous staff Rose began to backslide a great deal. Some of it was because she felt unwanted and like she was a bad person. We got so many notices over her ‘bad behavior’ in the classroom I could’ve wallpapered my living room. Instead of examining her actions through the lens of Autism and taking into account she wasn’t understanding the social rules she kept getting brushed off as being a problem kid.

We left that school and the support network of friends to move to a new school where she has become the firework I knew she could be if given half a chance. She returned to being that bright happy kid she was before they moved her away from the staff who made her feel loved and welcome.

Now at 8 yrs old Rose LOVES music; Katy Perry and Adele are her favorites. She can hear practically any song and sing it from memory with perfect pitch. I feel like I have my own Live version of iTunes when she’s home 🙂

Einstein is her go to guy to read about. She has a ceiling to floor poster of him and one of his quotes on her bathroom door. She is a huge fan of science and math, so much so that during her summer break she was constantly doing math problems and having her grandmother and I design science experiments.

She loves drawing as well. She often will watch videos on YouTube then pause them so she can draw a scene she likes by looking at the TV then recreating it on paper.

To help with her self-confidence we enrolled her in a Fine Arts Camp this past summer where at the end she had to be part of a public show. First time ever I got to see my daughter up on a stage participating in something.

She has made me a better mother. I fight for her everyday now instead of letting others dictate her life. Due to her intelligence level, which is higher than people have a tendency to give her credit for due to the Autism, I treat her more like a mini-adult than a kid which has given us a fantastic relationship. I do my best to ensure she feels loved everyday and wanted for just who she is.

She’s my firework who lights up my life with beauty and wonder everyday; I can’t wait to see what she’ll do when she explodes into the world.

 

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