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.