I am nearly five years into the journey of parenting a child with special needs, and I've learned a hell of a lot. The process of grieving and accepting is well and truly behind me now, but there are new challenges that lay ahead.
I think the thing that plagues me the most is that sometimes, honestly, I don't really know what I think about things. I believe that the opportunity for inclusion should be available to every child, but do I think it's right for my child? I don't know. I expect that when he graduates from high school, there will be resources available for him and for us to help him find something worthwhile to do with his time. But how do I judge what's worthwhile? Do I even have the right to decide for him what an acceptable use of his time is?
I have no reason not to believe that Pacey will ultimately be capable of living on his own to some extent. But I don't know if that's necessarily my goal. It's weird to look ahead and try to figure out who will be responsible for making these decisions. I guess as a parent of a young child you just imagine that at some point, they will be responsible for making their own decisions and you'll have to take a back seat and support those decisions the best you can - hopefully having instilled values in your child that guide them to choose well.
I personally always assumed that I would go to college, I would have a job and I would have a family. And that's what I worked towards. Those goals guided my decision-making and where I focused my energy. I just wonder at what point it will become clear to us what the goals for Pacey's life are, and how much Chris and I will decide those goals versus how much Pacey will be able to advocate for his own desires.
I realize this looks pretty far into the future, but I've been thinking a lot lately about what matters in making decisions about Pacey's education, etc (we have his IEP next week). I have talked about it with my husband, who I believe places more importance on Pacey being happy in his life. That's not to say that Chris would support a lifestyle of aimlessness, but it is his personal goal to make sure that Pacey is financially provided for such that he is not relying on his own earning power to support himself.
I also realize, of course, that there is no guarantee that any child I have will follow a path I envision for them. But it's somehow easier to make assumptions about the end goals in raising a typically- developing child and let it unfold along the way.
I read a post recently in which the author talks about her daughter's experiences thus far in a mainstream classroom and reveals that she wonders sometimes why she tries so hard to fit her square peg into a round hole. And I wonder the same...how do you find the right balance between challenging your child and not underestimating their abilities, with choosing an environment in which they will be happiest and most supported?
This post is a complete ramble and I think reflects the pretty disorganized state of my thoughts on the subject. I do, however, have some very clear hopes for Pacey. I hope that he has good self-esteem and believes in his abilities. I hope that he has companionship outside his family - and honestly, I hope that he has romantic love in his life. I hope that he maintains a great relationship with his sibling(s). I do hope that he is able to enjoy a level of independence and feel like he is in control of his life to a certain extent. I hope that he continues to develop his own interests and finds a sense of community for himself around those interests.
And looking at these hopes - I guess it's clear at this point that I care more about how he feels about his life than what he achieves. Is that wrong? I don't know. Is it acceptable to hold him to a different standard than I do his sister? I don't know. (for right now my main hope for Brighton is that she outgrow this phase of defiance! :)
This is one of the ways that I am most stretched as a parent...I like to plan, to envision and help bring to fruition. It drives me crazy that I can't divine the future for Pacey and it's so hard to take things one year at a time for him. Anyone have thoughts? Parents of kids with Ds or not, I'm interested to know how much you want/try to plan your kids' trajectories...