Opening My Eyes

 

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.

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Kim Cristo
Kim Cristo is the mother to a child with autism and a neurotypical child. She advocates for the rights of autistic individuals and their families.
Kim Cristo

Kim Cristo

Kim Cristo is the mother to a child with autism and a neurotypical child. She advocates for the rights of autistic individuals and their families.

0 thoughts on “Opening My Eyes

  • June 15, 2010 at 1:48 pm
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    I completely get where you are coming from and I am deeply sorry you are going through this. .  Unfortunately the “fight” that takes place in acquiring therapy is always about the $ no matter what anyone tells you.  If these therapy hours cost $4.00 instead of the typical $75.00 – $150.00 per hour (agency costs)  you would not have to fight with anyone. 

    12 years ago our regional center tried to stall as long as they could until Daniel turned 3 so they could pawn the responsibility off to the school district where they offered only 1 hour a day of ABA type therapy.  Ridiculous!   The approval came just a few months before Dan turned 3 but during the first IEP I made it clear that we would continue with the hours allotted him and Regional Center and the School District could fight over who paid for it.   They literally split the bill in half and we continued for another 2 years.        

    Thankfully for Ava you are an informed and concerned parent who will press on no matter how difficult it becomes and we all know nothing comes easy here.   You are fortunate to have other moms who can give you those tips and tricks to acquire more hours and 20 is not unreasonable at all.  If they give you a fight why not just put it out there:  “Besides the cost exactly what objection do you have to providing an additional 5 hours of therapy to further Eva’s progress?”    I’m curious what their answer would be. 

    Take Care & Keep Up the Good Fight!!  You’re Doing Great!!

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