There was so much build up to our trip to Ability Camp; the drive up seemed like the final bit of anticipation. Navigating through the Prince Edward County, passing over that bridge south of the lake, seemed like our final frontier. The blue signs marked Ability Camp signaled that we had finally made it. Adrienne and I approached the building, somewhat disappointed...it appeared to be an oversized, dated portable-type building, not the type of facility we imagined would bring us all those expected results. We were met at the door by Kaitlyn, the 20 year old daughter of the owner, the person who inspired Ability Camp. She walked us through the facility which housed mostly lodging and a large kitchen, gym and of course hyperbaric chamber. It was clean and tidy and smelled of fresh paint, they had just renovated the bedrooms. Our room had a small double bed and crib. We immediately got down to solving our first problem - space. Luckily there were a couple of rooms not being used and they offered an extra one to us. Now we had a separate room for the adults and the kids - much better I thought...Adrienne and I unpacked (Rob and Thomas would venture out after naptime) and chatted with a couple from Sutton -they brought their 18month old son Denton who appeared to be quite healthy, but we learned had many motor delays including not being able to roll over yet. We later met another couple from Quebec, whose 2 1/2 son Malik was very involved, could hardly lift his head and required a feeding tube. This would be their 2nd trip to Ability Camp, their first session (only last Nov) involved only hyperbaric and they were extremely impressed with results they witnessed by children who did both oxygen and therapy, so decided to come back.
It would be 8 o’clock before the other 3 families arrived from the US - Florida, Texas and Ohio, they all brought boys in their 2nd year, 2 of the 3 with severe cases of CP. We all gathered for orientation around 9ish and Thomas didn’t get to bed til 10. Therapy would begin the next day at 9...
Thomas woke up at his usual time, not as rested as he could have been, but quite good natured - until of course someone tried to speak to him! I noticed that he favoured the dads; of course the dads also paid more attention to him. Adrienne was enjoying the American groceries (lots of junk food) by 8 a.m. she was offered a package of sour skittles, hot chocolate and a cocoa puff cereal bar! More distressing was the abundance of peanut butter jars! I had to let people know right away about Thomas' allergy and hope for the best. We made it to our 1st session and went through the routine. There was plenty of stretching and transitioning from laying on backs/fronts to standing holding onto these wooden ladder-type chairs. Thomas unfortunately did not want to cooperate and let everyone know it. His screams/cries overpowered the room. I was struggling to keep up and getting frustrated with him. Not to mention, the conductors (therapists) had heavy Hungarian accents, which made it difficult to follow. Part of the day also consisted of potty training - each child had their own designated potty which was brought out approx. 3 times throughout each session. During snack, Thomas sat in a regular chair with a foot rest. They fastened a bar to the table which he held onto for support. It was the first time he has sat at table in a chair with so little support and he looked good. It was upsetting seeing many of the other kids struggling with their food, although the conductors insisted on moving everyone up to some degree of independence. Thomas would need to eat with a fork and mostly need to be able to control himself when I had to leave the room. Throughout the entire week, there were frequent breaks in the routine involving discussions, assessments, filling out forms, fittings for shoes etc. During these times, Thomas would enjoy crawling around and doing his own thing, even approaching different children and stealing their socks. He seemed to be unusually at ease in his new environment, only when he had to perform would he resist (and of course when I had to leave). This has always been a huge setback in his therapy - I stated this as his first goal to overcome on my list, as well as improvement to balance, ability to stand, crawl and speak with more ease. Following lunch Thomas was exhausted and I opted not to participate in the first hyperbaric session - there would be two each day and I figured he'd cope best after his nap.
The hyperbaric chamber didn't end up getting underway until 5p.m. Thomas was well rested and cooperated reasonably well all things considered. Two of the 4 kids did not do so well and screamed most of the hour. I entertained Thomas with books, beads and balls and sang for him. He was kept entertained and only cried when the plastic transparent hood was put on his head and when the oxygen pressure was rising and hurt his ears.
We didn't exit until close to 7 and it was time to prepare dinner. The day was already gone and it felt exhausting. Following dinner, we walked around and Thomas spent time on the floor crawling and exploring his new space.
Later that evening, Adrienne and I sat in front of the TV with some popcorn and were interrupted by two little girls ages 18 months 2 ½ who had plugged up the toilet of a bathroom under renovation. There was water all over the place and at 10:30 the Shopvac could be heard throughout the building. Needless to say, Thomas woke up and I was quite disturbed by the whole incident. Very young children were still awake and there was a whole lot commotion going on. These types of things were added adjustments to make…
The next day and going forward, therapy would begin at 8:30. It was a bit challenging to get to on time. Thomas did better with his exercises - I liked the stretching that took place, Thomas needs that to relieve tightness. He was still quite resistant and screamed blue murder each time a conductor tried to demonstrate on him. They lent us a pair of orthopedic shoes they believe are effective for tone and we walked with him pushing the back of the chair into the snack room. After snack and on the 3rd try, Thomas peed on the potty!
Following lunch, we did his favourite thing - 1-2-3-Go on the bed (he kept asking for it during therapy), then put Thomas down for his nap, which he again was more than ready for. It worked out nicely too because during that time the first hyperbaric "dive" takes place which means peace/quiet. I had to wake Thomas for his turn in the chamber. He didn't resist too much, however getting ready, he continually blew raspberries at Kevin (the owner and operator of the chamber) to show that he was not a huge fan. He kept busy watching one of his videos, his picture book and bean bags. I listened to Kim (the parent who owns a chamber) tell me about the benefits she experienced with her son and discovered that another child Devon has similar symptoms that Thomas has. As long as Thomas is content, the hour flies by with lots of chit/chat amongst parents. It was 6 o’clock by the time we exited; it was time for dinner and to wind down the day. The days were filling up quickly. That night at 10 p.m. a new parent arrived from Milton - a 27 yr. old dad with daughter Holly who just turned 1 a few weeks ago - she is now the youngest attendee by far. The common room (situated right next to my room) was busy with people talking over a loud TV. Finally at 12:30 I went out to close the door. A baby woke me up crying at 5:45 - sleep was going to be a huge challenge, which I couldn't really afford to miss. Just about every morning I would be so thankful and relieved to have brought the cappuccino maker...
On Thursday Holly joined the class and was placed next to Thomas. She screamed and cried throughout most of the session. It was heartbreaking because not only is she so young, but also blind and incredibly stiff and I imagined how terrified she must've felt. Surprisingly, she peed on the potty just about every time she was placed there – yet her sorrowful cries were esp. difficult to witness. At times, I would look around the class and be overwhelmed with the volume of suffering and frustration these kids had to endure to overcome so many obstacles most people wouldn’t think twice about. Later that night, I got up close with Jason - a two and half year old boy who was born 4 months premature, under a pound to a schizophrenic mother who was in prison. He and his twin sister (who has CP that is barely detectable) were adopted by Kim, who at 40 had three children already. Although Jason has so few abilities (i.e. can’t swallow, see at distance, hold his head, use of arms/legs) I placed my face next to his and sang and he turned and with some effort was able to focus and give me this broad smile. He was a beautiful child and I could see so clearly beyond his disabilities.
Earlier that day, Thomas completed his "before” video. An "after" would be done before we leave. At the close of the session, the conductors held a meeting with us to go over "issues" I think we were all experiencing. Things were not meshing so well and they wanted better participation from us and more patience. Not to mention, there were a couple of parents who were trying to be challenging and they basically had to say - "Trust us; we know what we're doing!" The next day, a huge improvement, including starting on time. We were also given big bags of the spice sage to bath our kids in! Apparently, this has been used for centuries as a natural muscle relaxant and when followed by the stretching exercises can reduce tightness, which Thomas does have. A new bath time ritual began that night. Also that night, Rob arrived for the weekend, it was exciting to hear someone call out "Linda, your husband is here!" Thomas played shy for a couple of seconds then decided to give in to a big bear hug and the two were practically inseparable most of the weekend, including 4 trips to the hyperbaric chamber - a nice break for me and a chance to finally organize my room, drive into town and do laundry and groceries and spend more time with Adrienne. The four of us also ventured out for dinner - although very small, Picton has a pretty good selection of restaurants. Rob and I put Adrienne on notice that we would need her to babysit so that we could go out just the two of us for a late dinner. Getting out is absolutely necessary - some days we wouldn't even set foot outside because the days are so full. As well, spending so much time with the other guests can be a bit much.
I think we had a productive first week and covered a lot of ground, including Thomas completing 8 hours of oxygen therapy (40 is considered a typical block). While I don't absolutely love staying here, I do have confidence in the program and the expertise of the staff. I think the first four days of therapy were more of an orientation and settling in period, so am expecting to see it ramp up more in the following weeks. I notice that Thomas is making gains - he is happy for the most part and learning to relax. He is communicating more and sounds are coming much easier and faster to him - he tries to jump in during song and twice this weekend I heard him say Adrienne’s name and it sounded very close. Yesterday I peeked into the oxygen chamber and waved to him and Rob and he waved back with an open/closed hand gesture- that is new. Tonight I was washing his hair and he voluntarily put both hands on his head and tried to wash – also a first. He is transitioning himself around better and while I tried to complete his stretching exercises in a lying down position, he pulled himself up to interrupt it. These are all indicators that new skills are developing. It is still early days and it feels like we have just completed the warm-up exercises to the therapy...
