Why did I have to figure it out myself?

Sometimes, the system people with special needs and their caregivers have to navigate really sucks.  When Hannah had her one year pediatrician appointment I spoke of in an earlier entry, not only did she begin seeing specialists, she also started Birth to Three, an early intervention program in Connecticut children that qualify can take part in until the age of three.  A group of therapists from Birth to Three came to my condo and evaluated Hannah.  She easily qualified so a physical therapist came to the house three times a week, for one hour per visit, to work on her OT, PT, and speech goals. Three hours per week didn't seem like enough time to me but that was what she initially qualified for.  After a few months, I wasn't seeing much progress so I started looking around on the internet for information.  I acknowledge this can be a very bad idea because it's not good to try to diagnose your own child but I knew there was more going on than was being addressed.  I happened upon a website that mentioned a CHAT screening test.  CHAT stands for Checklist for Autism in Toddlers.  According to the website I found, it is a test normally given by a pediatrician or therapist. I had never heard of it nor had her doctor or therapist mentioned it.   When I looked at the criteria through the lens of Hannah I was astounded as she met every single criteria.  At the next visit with the therapist I brought it up to her and said Hannah met every criteria so I thought she may be autistic.  What happened next still infuriates me.  The therapist said she knew about the test but the Birth to Three regulations would not allow her to mention it to me. I remember staring at her in disbelief for what seemed like hours.  When I finally was able to speak I was angry.  I asked her what would have happened if I never happened upon it?  Would Hannah continue to only get three hours of services per week?  She said unfortunately yes.  Her hands were tied but since I mentioned it, she would now be able to receive 18 hours of services per week.  Yes, you read that right.  She went from 3 hours to 18 hours per week just because I mentioned I thought she was autistic per the CHAT test.  I was not angry at the therapist. She was a sweetheart and was so good with Hannah.  I knew it wasn't her fault but I thought of all the parents that were lost and children that weren't getting what they needed because this system was broken.  I didn't understand why it was my responsibility to bring this up.  I'm not a doctor or therapist.  It just made no sense.  After 17 years of being an educator I now understand it but I still don't agree with it and it still angers me 22 years later. 

As parents, we need to educate ourselves and be our child's advocate.  If I had not been proactive, Hannah would not have gotten the services she did when she did.  There is nothing wrong with mentioning your concerns and what you think is going on to the professionals taking care of your child. You are with your child the most so you know your child best.  Don't be afraid to speak up.  If they don't listen, keep speaking up.  Follow your gut; it won't steer you wrong!

As always, you've got this and you are not alone.  

Comments

  1. AnonymousJuly 6, 2023 at 4:47 PM

    3 to 18! Thank goodness you were so proactive. But think of all the other parents who are so lost.

    ReplyDelete

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