Our 2nd week began with less chaos, and by week 3 people were really getting to know each other. Evenings especially were becoming much more social than I recalled from previous sessions. We were also becoming familiar with the few visiting spouses (two and one recently separated ex) and siblings (just Adrienne). One grandmother is staying for the entire 5 weeks with her daughter and 2 grandchildren, all under one room. The challenge of co-existing within a large group in a confined area is that privacy becomes limited and you sometimes feel that you are living life in a reality show. On more than one occasion, there have been jokes about who needed to be “voted off the island”. Overall, our group is getting along extremely well…
Weekend trips into Picton are taking place again – the biggest errand of course to the laundry mat. While Thomas makes up for lost time with Dad - mostly in the chamber (2 dives at 90 minutes each), Adrienne and I venture out just the two of us and in between wash cycles we grocery shop and hit our favourites (me, The Coffee Bean - hers, Giant Tiger). Later in the evening, Rob and I spend our time together, heading back into town to our favourite - The Barley Room.
It took us 3 weeks to finally round up a foursome for cards, Angela, a seasoned euchre player and Jo-Lynn who claimed to be really rusty and who Rob decided would be best partnered with me. Unfortunately for Rob, we ended up being a force to be reckoned with and so the weekend challenges have begun…
By the end of week 2, some type of virus had spread through the camp and children were suffering from loss of appetite, nausea and diahria - Thomas included, without the nausea, so he luckily did not lose class time. This did however take a toll on his energy level and he was not in top form for about 5 days. Kids catching and spreading germs is a big issue here and can really spiral out of control. Unfortunately very little can be done in a community type living environment.
Before catching the bug, Thomas was progressing well, gradually become more cooperative and less vocal during class. His vocabulary was and continues to grow and he was increasing his mobility skills. One day as we were walking back to our room, I observed that he could stand with his walker on his own, quite by accident as I moved an obstacle out of his way. The following day in class, he was expected to use his kaye walker without support at his hips, using a large 2 x 4 board at his feet to prevent criss-crossing. Kriztina, his teacher explained “he can do this now” and I steered him through 3 times with amazement. This is a big leap in terms of his movement towards independence. Unfortunately, his illness struck the very next day and he is only now beginning to reach this level of control, but now a very realistic goal for him.
Another fairly significant incident took place mid-way through the 2nd week. Thomas’ resistance to the classroom reached an all-time high. While a few of the moms entered the classroom to help with individual programming, Thomas realized that I was not one of them and had an inconsolable meltdown. The lead conductor, Tunde, decided to take him outside with his walker and I could hear his screams (closer to a roar) from my bedroom window. At one point, he bit Tunde on the arm. His screams continued into the next segment, (fine motor/speech) and Thomas had to remain in the gym so he would not disturb the others. During his time-out, Larry the husband of one of the stroke patients (who is quite fond of Thomas) spontaneously entered the gym, approached Thomas and asked why he was crying – Thomas replied he “wanted mom”. Larry was immediately asked to leave to which he stated, “Nobody cries like that unless they are being mistreated” then slammed the door. This incident quickly escalated to the owner Kevin’s attention and caused a meeting between all parties including Thomas and I. Kevin took the matter seriously, explaining to Larry the format and objective of the class, the educational process involved with children with high needs and to essentially quash the perception that abuse takes place in any form at Ability Camp. He also spent a fair amount of time describing childrens’ resistance to the program and then moving into behavioural problems associated with children with CP. I listened and sympathized as Kevin protected his staff and business and actually felt bad for Larry, who was visibly uncomfortable and who I knew ultimately reacted out of concern. And although Tunde did at one point highlight that Thomas had made gains with his behaviour, it stuck in my head just how much attention and control Thomas really did command. As we then entered the oxygen chamber I observed how every minute of my time had to be spent on entertaining Thomas or else there was an immediate backlash. Putting him on the potty, he would always call out “done” even though many times he was not – it was just to get me back in the room. During mealtimes, it was almost impossible to finish my meal or clean up afterwards, because he would not be able to sit and wait. It was as if the whole incident made me open my eyes to the fact that on top of every single need Thomas has, he was all of a sudden more challenged with this new behavioural piece, and I suddenly felt as though I had a child with insurmountable needs. By the end of the day, I finally had to concede that I had a more challenged child than I had realized and I took it hard. It was really helpful to be able to discuss this with Deb and Jo-Lynn, who could relate and be supportive and who rationalized the whole emotional dynamics to CP that most people don’t realize. Kevin and I also recapped over the weekend - not only has he seen so many kids over the past 12 years come through his doors, but he also has a 22 yr. old daughter with CP so he always adds a valued and credible perspective. He reinforced that children with physical disabilities are so much more dependent on their parents in general particularly because independence is so much more out of reach and parents end up doing more for them. He stressed that the purpose behind Conductive Education is to move away from that, and push kids to reach and surpass their potential. He also spoke quite highly of Thomas’ progress and while he used Thomas’ behaviour to support his argument with Larry, I think he felt badly that it caused a ripple effect of another kind. Nonetheless I was determined to make Thomas’ behaviour a higher priority and become a lot less tolerant of his screaming/crying. Besides being completely unpleasant, it is a drain on his energy that could otherwise be spent on learning. When I observe the other children in his class, it is heartbreaking to see that some don’t have the ability to swallow, keep their head up, raise their hand or even see. Some are athetoid – their bodies have involuntary movements, so they have to wear arm and leg splints to gain control. I then look at my child who comparatively has so many skills and potential to learn yet chooses to spend his time and energy trying to control the people around him. Somehow I had to make him realize that this is no longer an option for him and so this has become my new focus.
Aside from all that... this past weekend the stroke program winded down and we said good bye to 3 families as well as the two children who were receiving hyperbaric oxygen treatment. A total of 12 people vacated the building so our space has freed up substantially.
The camp also went all out this past Wednesday for Halloween, staff arrived at 7:00 a.m. in costume and decorated the classroom in true theme. During individual programming, the children dressed up and all headed down the dark pumpkin-lit hallways in procession and trick/treated on our bedroom doors. Later that evening Tunde invited everyone back to her home for more trick/treating and made a big batch of her infamous margueritas. Needless to say, it was a memorable Halloween Day for all of us!
