November 30, 2018
I’ve heard of parents dropping their kids off at Summer camps – maybe an adventure camp, computer camp, swim camp, or sports camp…ours is a bit of a different story….
It may seem a bit strange that I write about a Summer camp experience in late November, but I thought I’d share what that was all about – and, frankly, I feel it might be useful to also share the post camp experience. When I signed our son up for a bimanual therapy camp at a large university in New York City, I knew it was a full commitment for me, as well. It was far enough away that we needed to find somewhere to stay in the city. The camp was free, but the stay was quite an expense. I actually mulled it over for a couple years because I anticipated large challenges – I would also be going alone with our son and his usual supports at home, and it would require hard work and commitment from our son (who is not always so cooperative when pushed to try harder). The hope was that our son’s participation in the three week therapy camp (& study) for kids with cerebral palsy and hemiplegia would enable our son to gain better use of his more affected side. Our main goal was to give him the ability to safely hold on to both handhelds of his walker, and apply that to other activities (he plays sled hockey so using another stick in hand would be beneficial). Additional goals were to more correctly use utensils when eating, taking his shirt off independently, and pulling himself up while holding on with two hands. We didn’t have high expectations going into the camp. We really felt that he might just get closer to these goals.
There was no shortage of pre-camp drama. After making the commitment to go and arranging hotel stays for three weeks, there was an obstacle. Attending the camp was contingent upon my finding a couple of specialists for second opinions over a cancer scare that came up from a routine screening for myself in the weeks just prior to camp. After an ultrasound, more X-rays and an MRI in the week ahead of camp, I was cleared to wait another three months for another ultrasound, rather than an immediate biopsy. I was so grateful for the prayers received to this end from a group of wonderful ladies. I really wasn’t sure until just days prior to leaving for the camp that we would attend. I realized after my MRI was scheduled that it was on the exact day of my mother’s birthday. She passed away from cancer 14 years ago. I’ve recently been cleared for re-screening in 9 months.
After this green light, my son and I checked into a hotel in Yonkers, NY in late June just days after he graduated from the 5th grade. The camp began and ended with a functional MRI of his brain (which means he had to be still and awake). We had to cross town for the MRIs. Unable to rely on subways, cabs or buses we made our way in rush hour traffic in our modified van hoping to find a parking spot on the streets of the city since most parking garages at the egress or ingress will cause our already lowered van to ‘bottom out’. Parking, an otherwise minor issue for most people, was a major issue for us in the city. I brought his walker to camp where his therapists would work with him on holding on as he walked. I left the walker at camp for the duration of the camp as the equipment for our 12 year old is just large enough to make it very difficult to fit both his wheelchair and walker in the van at the same time. This required me to walk and bathe and transfer our son without his equipment at the hotel and elsewhere. I also developed costochondritis in my chest, in part, from the daily lifting, transferring, and care needed over the Summer months. I am still recovering but making improvements, and gratefully functional enough to care for our son at home.
Then, there was more drama. Most of our son’s time in camp was spent out of his wheelchair, working on core function and bi-manual tasks (which included fun games and activities). I waited in the lobby to assist with transfers and toileting. As the staff became a bit more comfortable with him, I walked around campus never more than a few minutes away. When our son fell on his head on the third day of camp, I rushed him to the nearest ER. With initial symptoms of vomiting, headache, and sleepiness, we took a four day hiatus. Our son made a quick recovery over a long weekend home after his fall. We had an unusual heat wave that weekend, and our air conditioning failed at home so I was glad to get back to the hotel the night prior to returning to camp. When we checked in and made our way to the room on the fourth floor, it was actually hotter than home since there was a sprinkler incident over the weekend and the air conditioning had also malfunctioned at the hotel! What luck. So, we were reassigned to another hotel. Camp went on through the July 4th holiday. Our son worked an extra hour per day to make up for time (7 rather than the usual 6 hours per day at camp). I would wait nearby or in the lobby as I was on call for transfers and toileting again. When my husband visited on the eve of July 4, we discussed how we would get our son to assist with taking his shirt off in preparation for bedtime. As we were discussing how to get him more involved in the process, he proceeded to take his shirt of in about 12 seconds! We had never seen his motivation to do this before, and we were speechless for a few moments. Suddenly, we had a whole new appreciation for what our son could and would accomplish at this camp. In the ensuing weeks, our son held onto the right handheld of his walker longer and longer in therapy camp. While his handhelds were actually removed from his walker at school prior to the camp, he is now able to hold onto his handhelds with two hands, and will hold on with the affected hand and let go with his ‘good’ hand periodically!
During this camp, I admit I was feeling sorry for myself as most other parents were able to leave the building and have a block of time to themselves without the need for a phone call to assist with their child. It was unfathomable to me that some parents would go home during the day and return to pick up their child. There were times I joined a small group of moms for coffee in the building, until I would get a call to return to the program for a toileting need. A couple of wonderful ladies also came in one day to visit me at the camp and have lunch (the same ones that were praying us through all the drama before the start of the camp, as well as our son’s progress through camp). I was so grateful for their support. Our son aced both MRIs. I really thought this would’ve been the hardest thing for him to do factoring in his spasticity and the patience of a 12 year old in keeping still for the tests. He was cool as a cucumber in returning to camp after his fall. He worked hard and cooperatively (so far as I know) with the therapists. I really felt that he handled this camp far better than I did. Our son’s abilities far exceeded our expectations for him. When we returned home, we increased the amount of time spent walking in his walker and using the techniques he learned at camp. It would continue to be important to do that so he wouldn’t lose the skill. Today, he is still walking with both hands on the handhelds, and I’m grateful we completed the program.
Would we do it again? More drama? Like we need more of that? Someone asked me recently if we would do this kind of camp again. I’ve said that it would only be possible if I had someone else with me to help. In saying this, I realize I have put life on my terms, and I put God and all the prayers in a box that could only be opened under my own conditions. The fact is we made it to camp, and our son accomplished way more than I imagined – we endured, and God is so faithful and He hears the prayers of His people. And, when we place our trust in Him, we never go it alone. This experience was yet another reminder to me that “I can do all things through Christ who gives me strength.”(Phillipians 4:13).