Saturday, November 7, 2015

#4 and #6

A few of my Facebook friends from the disability community shared this article from The Mighty called 7 Things I Wish My Friends Knew About Raising a Child With Special Needs and reading it struck a chord with me because of how I've been feeling about some things lately. I shared a lot over Down Syndrome Awareness Month about all of the great things that have been going on with Colin, but I would be remiss if I didn't also talk about the things that I personally have a hard time with. You know, sometimes I just truck on through life and deal with things as they come, but there are also times (like recently) where things are just a little more challenging than normal.

In the article, the item that stood out the most was #6 I worry all of the time. This couldn't ring more true than it does for me. I worry about everything when it comes to Colin and not in the same way that I do for my other children. The main things that I worry about lately are:
- Inclusion: Colin is only 6 years old, but his education thus far has been a very challenging road. It was clear how our year last year went based on some of my old blog posts and while it is significantly better this year, there is never an end to the worry about many things. We are currently in the middle of following the terms of our settlement which includes some independent evaluations. These will ultimately lead to the addition of some supports that will be very beneficial to Colin and his education. However, it also includes some very detailed information about Colin and sometimes, it's just a bit hard to get through.
Chris and I feel very strongly about an inclusive education for Colin but it is a road that will never be easy. It is a journey that feels very much like always swimming against the current. I do feel like we are getting somewhere now and I am thankful for the people who are currently working with him but the worry never stops.
- Everything else: This is pretty general but that's what my worry is like with Colin. I worry about him having the tonsils and adenoids out and how that's going to impact school. I worry about what his blood work results are going to show; does he have anemia again? (he's got some signs that have been creeping up of that). I worry why he might have an off day or about little behaviors we see. I have to think ahead and anticipate his moves when we are out and about in public. I worry about what variables he might have a hard time with depending on where we are. Did he have a good day? What did he mean when he said that? Will he follow the directions at Sunday School? Why doesn't he want to participate in Karate today?
The second thing that really stood out to me in the article was #4 I am jealous of how normal your life is. Don't get me wrong, I love my life and I love the Mom that I am because of the uniqueness of each of my children. It was discussed in the article that everyone has their own struggles and this much is very true. However, I am, at times, "envious of the simplicity". I would love to go to someone else's house and just be there; not feel like I have to constantly have an eye on Colin. I would love to sit and watch an activity of Colin's and not have to coax him into returning after a break. I would love to not have to plan ahead or talk it through with Colin.

And such is we just keep moving along!

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