Special Needs - When did that happen?

When the $#&*&@ Did We Become Special Needs Parents?

Since Will's 15 month check up  nearly two years ago I have spent serious brain power avoiding the word special needs. I had convinced myself that He was just in some therapy, things would be fine. Those AFO braces are just a little helper for our guy. He won't need them in a few years....

Since July 5, I have fumbled around trying to find a word to describe Will and our new situation, diagnosis, health crisis… whatever. I could never lump him into the special needs category because that would mean all this was real. It would be a label, a stigma even.

I’ve tossed the words around, quietly, I guess trying them on to see if I would use them. How I’d use them, would I just tell someone that so I didn’t have to go into detail and avoid a public (embarrassing) break down.

This last hospital visit – ug. It really sucked. The previous hospitalizations have been quick, understandable (vomiting, ear infection/fever) but this one was just an unexplained fever. What the heck?? And it was a high fever, 103.9. Where did this come from? Why? Was this a progression of the Mito disease? Come to find out a couple of kids in his class had the same thing.

So a reminder, research has indicated that the lesions on Will’s brain can be caused around viral infections, high fevers and they can also just show up without any reason. Research also indicates that if we can get Will on IV fluids quickly during these infections that there is a chance of reducing or eliminating the deadly effects on his brain.

Calling Will a special needs kid means labeling him into a very very wide category of abilities. Before all this, I had my own narrow minded views of what special needs kids were like. Not my son, he wouldn’t ever be in this category.

So all this mental fumbling around, a hospital visit, a very unsteady Will and then I read two articles…

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

http://www.exceptionalfamilytv.com/blogs/families/michelle/five-things-you-should-know-about-special-needs-family

Focusing on the first article, what the author describes as characteristics of special needs parents:

-I am tired.

-I am jealous.

-I feel alone.

-I am scared.

-I wish you would stop saying “retarded, Short bus, as long as it’s healthy” (I actually disagree with the last one in some aspects.)

-I am human.

-I want to talk about my son / It’s hard to talk about my son.

So, based on these descriptions of what special needs parents experience, two things solidified in my head, punched me in the gut, slapped me in the face:

1.      I (We) are Parents of a Special Needs Son. A beautiful, amazing, wonderful, incredible little boy.

2.      I can’t work on maintaining friendships that can’t put forth understanding on their part where we’re at now.

He has a degenerative, progressive disease. He has a list of special needs, shorter than some, longer than others. This is not going away.

One day, it’s not going to be ok. This is the reality of our special needs child. I’d add to the list above “It’s not going to be ok” – it’s not. Every minute of the past few days have been consumed with, is he going to get back to baseline? Is this it? Will he wake up tomorrow and not be able to walk?

No one, including myself, wants to discuss it. I know the easy response is that he’ll be ok. I can’t fault people for saying that. Hell, people ask me the dreaded “How’s Will doing?” question and I just smile and say good or great.

I ran into a guy I knew from college at a funeral a couple weeks ago. He sat down and asked, “So, what’s new?” I actually said to him, “Well… two answers for you, not much or where to start?” We both laughed and the turned our attention to other conversations. He was just making small talk and I can appreciate that. But it’s kind of the same thing when you ask, “How’s Will?” – I know you care otherwise you wouldn’t ask, but I just don’t know where to start.

Heck, some people who are my friends don’t even take a few minutes every once in a while to read the blog. I know that sounds terribly narcissistic, but I’ve realized that if you don’t truly care about my special needs son then our friendship isn’t really what I thought it was. This is my life now. It’s left us black and blue. I’m ok if you can’t handle it, I can barely handle it. Reference item 1 on the above list, I’m tired. I can’t work on maintaining friendships that can’t put forth understanding where we’re at now. I didn’t ask for this and you didn’t either, but here we are. You don’t have to know anything about the mundane aspects of his meds, dr. appointments, latest hospital visit, but a genuine and honest caring question goes farther than you could imagine. I’m not whining, just one of those realizations that hit me while reading the articles.  

I should note that you shouldn’t take offense if I cancel, miss plans, avoid you or flake out. I know those are not good characteristics of a friend. I’m trying, but sometimes sh*t happens and I have to make Will, his needs and sanity the priority. See item 2, I'm jealous. It's hard to be around pregnant women, families with kids running and jumping etc. Some days I'm just not mentally tough enough to hear/see everything.

I fake myself out every day that this special needs kid is going to be ok because he’s doing so well. We’re going to be the one that beats it, that makes it, that this wasn’t the right diagnosis. FALSE.

Maybe we won’t beat it or make it, but if I sit back and think about it – maybe it really is happening. Maybe we do have a little miracle in front of us and don’t even know it.

I just reread my post and realized it’s a hot mess of emotion and fairly difficult to read. I told myself I wouldn’t self-edit because then I’d lose the honesty of our life and one day I want to look back at this blog as a scrapbook of sorts.  

On the scrapbooking note, I started my new schedule today, 10 a.m. – 4 p.m. It was liberating to not feel like a guilty machine. Will was able to get some much needed extra sleep, I was able to talk with his teachers without checking the clock, I picked up/dropped off dry cleaning and made it on time. I got to pick Will up and spend more time with him, cleaned up the house and made a pretty good dinner! Maybe my mind is more clear today which is why I threw up all over this blog. J