Will is an almost 6 year who has a smile that can warm an entire room. Will loves to play ball, blow bubbles, go for walks, and shake your hand. But if you look closer you will see that Will wears an insert in his tennis shoe, wrist bands on his wrists to wipe his chin dry, runs in a stiff-legged gallop and tells you animated stories with his heart warming smile in 2-4 word sentences that are often hard to understand unless you are around him day in and day out.
Will was diagnosed right around his first birthday with Partial Agenesis Corpus Callosum (he is missing around 1/3 of the middle portion of his brain). Will was a very happy baby who interacted greatly with people but as months passed by, developmental milestones were not being met so we started to investigate.
Immediately, we began the First Steps process but I remember being told that there was a waiting list for an evaluation, then we would have to see if he qualified. At this point, Will was just at a year old and was unable to grasp a toy, hold his own bottle, sit without assistance nor was he making any motions towards army or regular crawl. The earlier the intervention the better outcomes is what I was told over and over again and confirmed with my own research. While we awaited First Step processes, we began Occupational Therapy.
We did qualify for First Steps but we only qualified for one therapy to begin. Will was delayed greatly in all areas yet we only qualified for one therapy per week. We knew he needed more so again we sought out additional therapy. After multiple discussions we were able to get additional services through First Steps with all therapies (Speech, Physical, and Occupational) but not as much as he needed. Once again, we sought out additional services.
When Will turned three, he began the transition from providers with First Steps to ECSE and Boone County Family Resources. This was a wonderful discovery that as long as Will was getting services through ECSE that Boone County would help cover additional services. This! Yes!! Finally, we could get the frequency of therapy Will needed to really make strides and get the support he needed to build his brain connections. Then hiccup, while Will's age said 3 years old, developmentally his brain was around 12 months. He was not ready for ECSE and it was too strenuous for him. The decision to pull Will from those services was a tough one as all our funding for therapy was lost. A specialized speech preschool, speech therapy 3x/week, PT, and OT weekly coupled with music, aquatic, and equine therapy was the therapy schedule that would be left unfunded. Luckily, our insurance does offer "some" habilitative therapy coverage but not enough. Twenty visits combined PT and OT does not cover an entire year, and every 20 speech visits must resubmit a plea, begging for 20 more visits.
Our journey thus far has ping-ponged between receiving some help on therapy costs, some insurance coverage, and lots of out of pocket pay. Early intervention and the need for Will to have 1:1 therapy to best learn skills in addition to small group setting of specialized preschool rooms has been our biggest driving force with keeping continuity in Will's therapy regime. The need for better coverage for kids with special needs would not just benefit Will; it would benefit so many children who desperately need therapy but cannot get the full scope of services due to cost.