Isolated

I know it has been a while since we've posted anything. It does not mean that nothing has been going on. On the contrary, it means we've been extremely busy. Even now, in the summer time, we have work and the kids have camps. In just a little over a week though, Daniel will be having a milestone in his life. He will be going to his first ever sleep away camp experience! This is pretty huge since he has never once slept away from us. This decision may seem like no big deal for any other kid and it is true that Alison has been going to sleep away camp for three years but it is much much different for Daniel. First, we had to find him a place to go as there are not many camps that take children with special needs. We also have to consider the fact that Daniel will not be able to communicate to us if there is anything wrong or if anything happened. It is not as though he tells us anything about his day anyway, but now it is a whole week of not seeing him or knowing what is going on. Not only that but what will he think when his family leaves him? Will he know that we will be back? Daniel is a boy all about routines and will get very upset if his routine is disturbed, will this put him over the edge? There is really no way to tell, no way to know for sure unless we bite the bullet and send him.

For Jason and I, it will be a real treat (well if we/I can get over the sadness of sending both kids away in the same week). It will be a week that we will not have kids, and that is just crazy! He and I have not had that kind of time in 13+ years! It is difficult, and may be more difficult because we have Daniel, to get away. Even leaving the kids with a stranger is pretty much unheard of. We need to find someone who can deal with Daniel and that is not at all common. Usually we rely on my parents, but they watch him during the day before and after camp/school so to ask them to do so on a weekend or at night would be asking too much and let's face it, Daniel is becoming a handful.

Essentially Daniel is a sweet boy who is developmentally delayed in all areas. This means that while he will be turning 10 in August and has a body of a 10 year old boy and strength of a 10 year old boy, he has the mental age of a toddler. He also does not have the communication skills that a typical 10 year old may have and he has some sensory issues which makes him do things like hit or kick or pull hair and he does not understand that this is wrong. He is a smart kid and he is learning a lot every day, but this is the one area that he just does not comprehend. Really for him, he doesn't feel pain or his level of tolerance is higher. It takes a lot more sensation and he seeks that out in others. He does not understand the idea that he is hurting you or that you are upset BECAUSE of what he did. We are working on this. There are many many behavioral ideas to work on with this and we are enrolled now in a new program that may be helpful. We also have Daniel on new medication to maybe help with the behaviors.

All this does not help the here and now. The day to day struggles that we have, and my parents have. We feel isolated a lot of the time simply because we don't really know how Daniel will act around strangers or even his own family. We all went on a trip to Philadelphia last month and there were some stressful moments. The night before the trip, Daniel pulled off Alison's glasses (which he has done before with no problem) and broke them. Then on the plane to and from we had to hold him back because he was really interested in the people in front of him and trying to touch them. Unfortunately due to sensory issues he won't wear earphones and so watching a movie (which he loves) does not keep him busy. Anyway, it was a nice trip overall but you can see where we were stressed. It didn't help too that we were away from his regular routine.

So we are alone, or at least we feel alone. Sometimes it even feels like people avoid us because of Daniel's behavior. It is probably in our imagination, but that is the way we feel. It seems absurd since Daniel is such a sweetheart. He is so fun and funny and loves everyone he meets. He is such a good boy and Alison is an amazing big sister and overall great kid too so you figure why should we feel so alone? Why are we afraid of venturing out of our comfort zone? I guess this is what the reality of having a kid with special needs is all about.