So on to our next battle....Joey being denied access to nursery school because "his needs are too great" in order to participate in activities with other kids his age. At the time this happened we were right in the thick of the whole Angelman confusion, so I didn't have much energy to deal with it, but as September looms and it becomes increasingly obvious that Joey doesn't spend nearly enough time around other children and is actually frightened of them, we know now that this is a priority. I have placed some calls to nursery schools to confirm this is what they're telling me, but I know that I understood correctly the first time. I was told that Joey's needs are too complex (not being able to walk, not being potty trained, not self-feeding) in order for him to enroll. I completely understand the limitations of staffing and the safety issues, so I offered to provide a one-on-one mediator to attend with Joey, at no expense to the nursery school. The answer was still "no", because if Joey had his own adult to work with him it would be too many adults, and if they did it for us they'd have to do it for everyone. Ummmm...yeah, and what's the problem with that exactly?! So calls have been placed, I'm asking for things in writing and will be taking this to the Human Rights Commission of Ontario and will lodge a complaint if necessary. NO ONE WILL TELL ME MY CHILD CAN'T DO WHAT OTHER KIDS DO. Period.
On a much happier note, Joey also had his first encounter with the slide at the park. It started out a bit rocky but ended positively!
And now that all of our gates are up and fully operational we haven't had any more Joey vs. Stairs incidents, thank goodness. He actually finds the gates amusing:
Joey is now kneeling all the time, and can pull himself into this position himself. He will kneel at the coffee table or the couch and reach up to grab his toys.
His eating is on a little bit of an upward swing, but not much. In my never-ending search for high-fat-and-calorie purreed food to introduce to his diet I came across Macadamia Nut Butter at the health food store. Ten bucks a jar, it has TWENTY THREE grams of fat and TWO HUNDRED TWENTY calories in two tablespoons. So of course it is off limits to Jason and I! Joey has eaten it a few times mixed with pureed mango or pineapple and so far seems to like it. Sure beats peanut butter with it's measly 8 grams of fat!
We got a new stroller for Joey that supports proper posture so much better that we don't even need to use his special seat liner anymore! Joey's wonderful PT Jennifer checked it out on Monday at our last session and was very happy with how supportive the stroller is for him. And I like the funky red colour :) Pictures to come soon...
That's all for now. Hope you're having a great summer so far, we're certainly enjoying our first entire season with central air conditioning!
-P, J & J