Its been a busy last few weeks!!
We had the neuropsych evaluation that is needed on the surgery path and an appointment to see if Ryan would be approved for ABA therapy through Wisconsin Early Autism Project (WEAP). Basically two appointments with two different people who evaluate the same things…but for different reasons. Lots of information and there was lots of growing for Ryan this last year!!
The neuropsych eval went well and was only about 2 hours long compared to what the paperwork stated of 4-8 hours long. They took Ryan back to play with him and I was left filling out a bunch more paperwork about Ryan and his development. Just as I was done with the paperwork, they came out with Ryan to change things around in the room and then I was asked to go back and play with him. We played with trains, a food collection, and then I was asked to leave the room so they could watch him from another room how he dealt with me just leaving. After a few minutes, I went back in the room and played a little and then the doc came back in to discuss everything.
She was very happy with the progress that Ryan has made in the last year since we saw her last. She realizes and voiced that there are still a lot of developmental delays but knows because of the scarring in his brain, some of the delays are going to be there. She also is aware that a lot of those delays may come from Ryan’s Chromosome 18 abnormality. So its hard to say what delays are causing his language to be behind…is it from the scarring/seizures or from Ch18? No one has those answers other than the good Lord above.
She did mention, however, that his language has gotten much better from last year since there has been an increase of seizures that he had the year before. She said that it seems the language part of his brain, that is normally on the left side, has reorganized itself to the right side to an extent.
She mentioned that it would be difficult for her to be able to diagnose him with autism as he has shown so much growth and still doesn’t show the repetitive signs of autistic children. She mentioned how because we have insurance that will cover at least some part of the cost for ABA Therapy, we shouldn’t have to worry whether or not WEAP would approve him for the extra therapy – that he should be approved with no problem.
We left the appointment after only being there for 2 hours…pretty good for thinking we would be there for at least half of the day!
The following day, we headed to the next evaluation. We were brought to a huge room that had any and every type of toy. From a small kitchen with food to animals, books, a table and chairs in the middle of the room, and basketball hoop and ball…that’s not even mentioning all of it. The room had about 10 seats available for adults so I was curious how many people would be joining us for this specific evaluation. About 15 minutes after we arrived, a woman joined us. Ryan was playing and didn’t seem to be bothered by the additional company as she evaluate him the entire time while asking questions about his likes, dislikes, and behaviors. After a couple hours, we were done with the eval and she clued in on the results.
The woman at WEAP told of some new information with the autism spectrum and ABA therapy — A year ago, there was a diagnosis of PDD-NOS which put children on the autism spectrum. Some kids with developmental delays are considered autistic with this PDD-NOS diagnosis and it helped them receive additional therapies. However, since April of this last year, they have changed this to be taken off of the autistic spectrum and a child is either autistic or not…no PDD-NOS diagnosis at all.
On a side note and reminder, last year when Ryan had his neuropsych eval when we were on the surgery path then, he was put on the spectrum with a PDD-NOS diagnosis.
From the information the day before with the doc in neuropsych and the new information received from the woman at WEAP, I started to get a bad feeling about ABA therapy for Ryan. As she continued, I knew exactly where it was going.
WEAP has a 24-month wait for those families with autistic kids who qualify for ABA therapy. Those who have autism and do have insurance are able to start ABA therapy as soon as they fit on the schedule. Just because anyone who comes in for an evaluation has insurance, does not mean they receive therapy. They have to be diagnosed with autism.
In our case – Ryan is an awesome candidate for ABA therapies because he would grow and learn so much faster but was NOT diagnosed with autism at either appointments. Therefore, because WEAP is an autism group who support therapies for children with autism, Ryan does not qualify for ABA therapy through WEAP.
Another road block for my boy……who will trample it to the ground with this mamas help!
If anyone has any information about therapy other that OT, PT, and speech, please email me.
Thank you for your suggestions, kind and caring words — and most of all, supporting my kids and I on the wild journey we’re on!