At 5 months gestation, I found out my only child had a genetic condition called Tuberous Sclerosis Complex. He could possibly face epilepsy, autism, and global learning delays and even physical disabilities associated with the condition or he may never know he had it if not for the telling place in his tiny heart seen on the ultrasound.
After meeting all of his milestones in the first two and a half years of life, my son began to regress rapidly. By the time he was assessed by Early Intervention, he was a few months behind but not enough to qualify for services before his third birthday. It was explained that at the age of three, the school would take over any services he would need such as speech, occupational, or any other therapies needed. Suddenly, because of his rapid decline in impulse control, disruptive noise making, and reversal in toilet training, he was dismissed from daycare at the age of three.
How was I going to work? I worked five-days a week and took call every fourth weekend plus one night a week. My closest relative was an hour away and it took all three of them to help keep him on-call nights and weekends because I also had him in private speech therapy and he was about to start going to school two days a week for two hours in the morning for their provided therapies.
I had decisions to make. They were tough ones. Give up my career to give my child the best chance he had or hire a babysitter to keep him at my house and continue to work. Well, it turns out, it wasn’t that tough of a decision.
The Story of Now
We find ourselves in a season of the unthinkable. My son, now thirteen, has outgrown us all. He’s still that two-year-old in his mind but at five-foot-eleven inches and two-hundred-thirty pounds, he’s a man. I can’t help but feel that I continue to fail my own son. He can’t read, write, wipe, bathe, or even go out into the world anymore because I don’t have control enough over him.
We know that the long-term solution is residential care. It’s hard to admit. It’s hard to type. But it’s true. Our son gets bigger and stronger and more withdrawn from the world each day and we can’t do anything about it. With residential care, he would have peers, therapy, and get to learn real life-skills outside of the confines of school and home but the waiting list has twenty-five hundred people on it in our state. Twenty-five hundred! The wait time is estimated at fifty years.
We can’t wait that long. Many families can’t. Many families don’t even know what will happen to their child if something happened to them because they assume the state will take care of it but that’s simply not the case. There are steps that have to be taken way in advance to be put on the list and then all of the waiting. It’s disturbing.
Even then, you wonder, where will my baby end up? What if I’m not around to make sure there are good people caring for my child? What if the care isn’t adequate? Even if I am around, who do I complain to if we finally get an available space? These are all valid questions.
The Story of Us
This is where The Infinity Puzzle Project was born. A campus where our kids aren’t invaders to the outside world but a place where they belong and can call home. Also, a place where parents can use just the services needed.
At TIPP, we want to make love, learning, and convenience key priorities.
We want a future for our clients and their parents. If that future is with us in a residential home, then we aim to make it the most loving home outside of their actual home. If our clients only need therapies, we hope that having all therapies at one location can help parents continue to stay in the workforce if they choose or care for their other children.
We want what’s best for our families and we won’t accept anything less.
As of now, since we don’t have land to start the campus, I continue to consult parents on how to help their kids through school, IEP meetings, and sometimes just generally through getting up in the morning. Everyone needs encouragement. When we do attain land, our first priority is to have a home-base for parent meetings. Strong parents equals a more stable future for the kids. Secondly, we know we need life-skills camps for middle-school aged kids all the way up. Thirdly, we need afterschool and summer programs, as well as respite programs for all ages.
That is stage one of The Infinity Puzzle Project. Guide the parents, serve the clients, better the community for our clients and for everyone by keeping parents in the workforce and allowing our clients to have skills to give back to their hometown.