Updated: Jan 28, 2021
We made it not quite 3 weeks with this group before an amicable parting of ways. When I discovered Camp Paha in March at a county SPED summer resources open house, I had been speaking with a rep from the DDRC table about our recent sponsorship, and they pointed me toward the Paha table. Their director seemed sweet and encouraging. At that point I needed something for summer, how could I go to work if I didn’t have a place for B? and she understood this perennial (but so modern) dilemma. She was honest, for his age their June session was full, but July could certainly be an option. And they accepted a lot of sponsorship from DDRC, since we already qualified, the application for further funding would be seamless.
Thrilled, the next week I submitted our camp application, applied for DDRC funding (since the sticker shock was steep, but just another thing I’d grown accustomed), and in the coming weeks exchanged a handful of phone calls on our prospects for June enrollment. We were first for his age group for June, and automatically admitted for July. As the weeks ticked on, I wasn’t sure whether it would happen. Soon before Memorial day after a number of phone exchanges that their admin staff still wasn’t sure, we got the notice he could join starting June 3. I quickly scheduled the required parent meeting and camper-counselor meet-n-greet for the following week, and took our IEP and ABA progress reports (since it’s now up to 50+ page packet) into work to make obligatory copies for camp admin to review.
Brys had made so much progress over the previous spring in the Shelton program and with ABA, this seemed like it would be a breeze in comparison to some of our previous school and summer programs. When I handed the camp directors his documentation at the parent meeting, and they progressed to ask him questions, I had a sense they wondered why he was even there. When he can be collected, he’s a charmer and a joy.
The morning of the first day, I asked Bryson if he was excited or nervous, and he could express he was both. At drop-off I was aware many of the other kids had different kinds of disabilities; autism was common among this group, but I also noticed families with down syndrome and cycstic fibrosis, and a gamut of other special needs. I had been told at some point that 5 of the 9 kids in Bryson’s group had tendency for elopement, so they had intentionally made that group small and had 6 counselors dedicated to the group. And of course autism ranges so it is so individualized, and I could see immediately that Bryson’s form of needs would be pretty different compared to other kids. Even though his Shelton program is specifically for ASD, everyone there seems to be pretty high functioning, as he is. But at Paha the range was much more drastic, and I wondered how Brys would react to that.
By the end of the first week, we started getting the phone calls I had grown accustomed when he starts to disregulate. He was coming home wearing soiled clothes and his lunch was barely touched. Does he need more snacks throughout the day? Can he be reminded to use the bathroom more often? Who is his dedicated person and how much time does Bryson actually spend with him? They were committed to making it work, and I do believe they tried. His first expulsion came toward the end of week 2. By week 3 I spent more time in phone exchanges with how they could to help him regulate, but just to no avail. Casey was feeling frantic with even just driving both kids each direction. Brys hated camp so much, not that he would say that, but fought with her over even being in the car (driving both directions). The last day of week 3, I got a phone call that this wasn’t going to work any longer. He would not be able to return for the remainder of the summer. That each summer could be a do-over, so he could back again next year if he wanted, but for his behavior was a liability.
A liability. A safety risk. Needing too many resources. Distracting other kids from their necessary learning environment. I’ve heard it so many times, I know the conversation before it starts. I think back to the first 3 schools he was in, I fought it so hard. I fought for him to stay there, I didn’t know how to change. We were so lock-step in our routine, I needed to work, John needed to work. Where else would I go? How else do we manage our daily logistics? How much extra time will that take if we need to send him anywhere else? How will I find the time to figure out what those new arrangements need to be? It was so hard for me to adapt, I just didn’t know how.
This expulsion marks our 8th school/camp change. He will return in August to Shelton’s program, and now we know he does well there. In the meanwhile, what do I do with this child? It’s 5 weeks until school starts again. Everyday, all day, the balance of taking care of both boys, is so wearing. Brys has nearly no capacity for independent play, and demands a contract stream of adult engagement, to Wesley’s sacrifice. After the police incident earlier this week, Casey let me know she does not feel comfortable going out with both boys, even to the park. I don’t blame her. She is just risk-adverse, one of the reasons we love her, because she always wants what’s best for keeping the boys safe. But “safe” and “Bryson” are not words that go together. I agree with he, and I aim to take B on my own as much as possible, so she can focus on Wesley. But what an arrangement, and I can’t think about the cost.
One day at a time, that was it takes to live with autism. We’ll just keep taking it one day at a time.