When you have a special needs child, fighting for them becomes your life.
And it gets tiring, but they are so worth it.
After Payton was born, we had her evaluated by Early Intervention. It was decided at that point that she would get physical therapy. I was not necessarily happy with just physical therapy, but I wasn't sure my voice would matter.
And so we went with it.
When she was about nine months old, our geneticist told us that Payton needed to be getting speech therapy services from the county. So I used my voice and asked for it ... and we got it.
Up until she was two years old, physical therapy and speech therapy were the services that we got from the county. We were told we couldn't have more than two services and that if we wanted occupational therapy or an infant educator, that we would have to drop one of her other therapies.
Why does it work that way in my state? I have no idea. But it sucks.
I can't remember exactly when ... perhaps after her first birthday ... but we began taking Payton to see Pat Winders at the Kennedy Krieger Institute for physical therapy. Pat is an amazingly talented physical therapist for kids with Down syndrome. She also wrote the book Gross Motor Skills in Children with Down syndrome and we were just very blessed to have her for a therapist, even if just for a short time before she moved on us.
In light of the therapy with Pat and the fact that Payton walked at 17 months, we decided to drop her physical therapy when she was 2 years old. The only reason we did that was so we could pick up occupational therapy to help with any sensory issues she might have had since she was a horrible eater.
The fall after she turned 2, she began preschool and all of her therapies went away. The thought process is that she would get her therapy through what they did in class at school.
I wasn't so sure about that, but my voice didn't matter. We are very blessed to have her in a fabulous special needs school with an even more fabulous teacher, but I still wasn't sure it was enough for her.
Now that she has been in school for almost five months, they are finally starting to agree with me when I say she needs one on one speech. They agreed to have the speech therapist observe her and yesterday we met to discuss the outcome of the observation.
So ... her expressive speech is at 12-18 months, but her receptive speech is at 24-36 months. And I pretty much concur with this, as much as these ranges suck.
They have agreed to do a formal evaluation and if everything goes as planned, she will be getting speech one on one sometime during her day at school. Thank the Lord.
The nice thing about all of this is that her teacher is completely on board with me. She said yesterday that she would like to see Payton doing more expressively. Me too! Payton is so smart and her receptive language is awesome. It is boggling my mind as to why her expressive speech is not coming along like everything else. I also am going to check into private speech options and see how much that might cost us. Ugh.