There has been a lot less motivation to write since I am now so restricted from Thomas’ therapy, with a lot less to observe (and maybe just getting a little lazy). Thomas is learning to get by without me for up to 4 hours - this is proving to be a learning curve in itself and one that he struggles with less, but still struggles esp. during separation and the beginning of the program. I have discovered that leaving the kitchen area (which is situated outside of his classroom) is the best coping strategy. By the time I visit Thomas during individual programming or at times not until lunchtime, he is very much at ease, and very social to be with. He knows all the children’s names and attempts to say them, he points to his artwork on the wall and to the progress charts. The progress charts are really well done, they are themed differently each week and chart each child’s progress in terms of performance and cooperation. Last week, the theme was transportation and there were different sceneries on Bristol boards (i.e. boats in water, trucks on road) where each child’s name was attached to a vehicle and placed along the route accordingly. I was surprised to find Thomas consistently in 3rd place.During this session, we received visits from Jayne and Greg (who were briefly passing through on their way home from Ottawa) and our first overnight guests Suzanne, Keven and Alexandria. We booked an apartment at the Picton Harbour Inn and while it snowed and snowed, we spent a whole lot of time indoors playing cards. Adrienne also appreciated her cousin’s company. It was great to have a little escape from camp and spend some quality time with family. The following weekend, Cynthia treated Rob and I to dinner in town - lobster at Currah’s which was delicious!
Even after almost four weeks, it continues to be very easy living with the other parents. We all continue to get along well – there is a good ratio of vehicles, so more comings/goings and less congestiveness. Thankfully the mom with four kids (Helene) has learned to adjust probably as much as we have had to adjust to living with her kids. The food cupboards are all safety locked as well everyone locks their bedroom doors (on a couple of occasions, with keys inside). One morning while Thomas was still sleeping her son Marcelle snuck into our room and crawled into his crib - about twenty minutes later, he climbed onto a chair and put his face right into our omelet. He needs to be watched constantly and I had to remind Helene of that. I don’t envy her being here with 4 kids, it would require me to be constantly on top of them, which she seems to struggle with a lot. Aside from that, there is lots of socialization within the camp… Kelly from Oklahoma does a lot of “home” cooking and has invited us to sample her specialties like deep fried pickles and homemade enchiladas. Last weekend she also baked a humongous butternut pecan cake for the entire camp. One of the grandmothers arrived (her daughter had to return to work) and she happens to be a fitness instructor and has motivated me to finally devote some time to exercise. She also enjoys drinking red wine, so we are spending even more time together. Robin’s husband Chris is here for a week, so we now have two men who are still largely outnumbered but manage to hold their own (and add a lot of levity to the atmosphere). Today, we are holding a potluck dinner which is turning into a small feast…
I am also spending a lot more time in the TV room and really appreciate the depth of conversations, which probably comes from being with an older crowd and just having the wisdom of parenting kids with special needs over a longer haul. There is a mom here who filed a human rights complaint against the government of Yukon, based on a wide discrepancy in funding awarded for early intervention to kids with autism vs. kids with CP. I remember learning about the new funding on the news (somewhere up to $60K per year, per child up to age 6) and feeling completely outraged that nothing even close was in place for kids with CP. I have now been inspired to take some action of my own – advocacy is an important piece to the management of a child’s disability. Unfortunately there is still a lot of ground to cover, yet the challenge is finding time within your day which is so consumed in your child’s care – which is why early intervention if so critical!
I am now in full downsizing mode, trying to hang on to as little as possible to prepare for my drive home. I cannot wait - eight and a half weeks has been a long time to be away from home and family, especially for Thomas. He is continuing to increase his walks up and down the hallways and stops at most doors to say hello - when he passes the TV room he is reminded of his dad’s departures and announces “Hommmme”. It has now become his favourite and most commonly used word. It will be difficult to challenge Thomas to walk the distance he has worked up to given our household layout and I know that a move is imminent, esp. if we want him to use his walker. News arrived this week that Thomas’ new plinth table, grasping bar, stool and walking ladder are now complete - thanks to Uncle Paul, and Uncle Keven has begun to build chairs and a foot stool. Thoughts of all the changes to implement at home are consuming my mind. It is definitely time to prepare to shift gears…
