Rambling about Evan

So I haven't gone to bed yet. Well...I think I was asleep for about 30 minutes. Evan just fell asleep half an hour ago. In order to keep myself awake while letting Evan wear himself out without playing with him, I was looking online at blogs of families with an Angelman child. There is something unique about having a child with special needs and while I know everyone has their own idea of the best way to raise their children, it is interesting to read the thoughts or experiences of them anyway. For example, I'm not the greatest advocate for Angelman Syndrome awareness or research or other things. I feel that Evan's symptoms are on the higher end of the scale. He can walk. He doesn't have seizures(this is huge in an area where children have died from the number or size of seizures their little bodies have had to endure). We were given a diagnosis fairly quickly, within the year of beginning the process when other families have had to endure multiple years of not knowing why their child was different. I think that part of my struggle with being overly involved is that I am still on the line in many situations of whether his behavior is due to this genetic syndrome or if it is due to his personality, or the way we act or react or teach him things. We have altered our lives for Evan in certain ways, but right now one of our concerns is how to get him into his bigger bed so that he will sleep. He needs the bigger bed because he's so tall, but in our opinions it needs to be enclosed so that he will fall asleep. But is it overly important that we do that, or should we be spending more time on training him how to fall asleep in a normal bed on his own?

I looked at one blog where the son is just a few years old and reminded me very much of Evan a few years ago. They are in Australia and she was posting about how she can't wait for the day when her son will walk to her. It was nice to be reminded of how miraculous that is. I looked at another blog where the family has 5 children and their daughter with Angelman's is the oldest. I've been wondering about whether I can handle adding another child to this mix. It is nice to see that other families have been able to do it.

Evan is an amazing little boy. There are a lot of things that I don't know how to overcome, like the way other children view him or interact with him when his actions seem mean(He likes to hit, kind of like giving you five, but continually and without your hand being ready for him. He pulls hair when hugging, sometimes even the hugging isn't understood). He can usually sleep pretty well, but today we couldn't figure out what was keeping him awake. While Oliver was trying to continue to find solutions(maybe he's hungry, thirsty, in pain, too hot, etc.), I kind of gave up and thought it was just the syndrome. And to know that this isn't a very common thing, made me (eventually) get to the point of being okay with it tonight instead of being angry that he wasn't falling asleep. Perhaps he needed some more oral stimulation than his pacifier was offering him because he fell asleep like this:

On the upside he brings us a lot of joy. We notice his advancements more since we don't always know if they are going to come. He's four years old and we still get a huge kick out of him waving to us.

Well, time to stop this rambling and get some sleep.