Friday, February 17, 2012

Dealing with Disability

So tonight I had a wonderful dinner with my friend Dawn and Nicole and a few others. One of the topics we discussed largely was dealing with our kids and their disabilities. My friend Dawns son is Austistic. Nicoles son is ADHD. Well as most of you know, Gavin has MD and Dylan is ADHD (on the severe side if you ask me). Dawn said something tonight that truely made me stop and think. She said "Most people do not get what we go through. They couldn't imagine what we have to deal with"  Well you know what.. She is right!

I get so aggravated at people in how they treat us with such rudeness. Such as when Dylan acts out in public. People give me the disapproving look like I should have my kid on lockdown, or I'll have someone tell me I should whip him (which I firmly believe in. However there is a time and place for that) Yeah, like I enjoy watching him have this obsessive need to touch everything that he comes in contact with or him practically crawling in, out, around and under the shopping cart.  Running into things either with the wheelchair or my cart. I could go on and on. But NO, No I do not like it when he does this but you know what it's sooo much better than him trying to get away from me and crawling under the clothes rack and pushing things over. Don't get it twisted, having adhd is no excuse for some of his behaviors but it's the serious stuff I'm talking about. He really can't control some of his impulses. And I'll be darned if I didn't have someone trying to tell me what to do with him to make him better. Let me just say this, every child is different. Every case of ADHD is different. What works for your child, doesn't work for mine. Your suggestions of a better diet, of meditation, of schedules, non medicating, taking things away, whatever it may be.. yeah I've tried them all. I've finally found something that is working for him and I'm happy with that. So don't tell me what I need to do because frankly, you don't know. And when your child has to deal with something that can't be controlled by a simple butt whooping you'll know what I'm talking about.

Now on the other side of the spectrum, here is my youngest with a rare form of Congential Muscular Dsytropy. Wheelchair bound. And here I am dealing with idiots and morons who like to walk out in front of us when we are trying to get by or parking in the handicapped spot when they are perfectly able to walk or don't have tags. And they just look at us like what? Or the people who give us icy stares for parking in handicapped. I've actually had a few people question me about Gavins disease. Seriously? No, his wheelchair is not a stroller but thanks for asking. Or the people who so rudely tell me I did something wrong while pregnant. This is a huge offense because if you had half a brain a genetic disease plays no part in your diet while your pregnant. And just so you know I did everything right. And you know what, I did blame myself for the first year of my son's life because I did feel like I did do something wrong. But I didn't. This happened at conception and there was nothing I could do to stop it or change it. And for you to open your mouth and tell me something like that.. well you really don't understand the impact your words have on me. How dare anyone tell me I did something wrong to cause this. And then there are others that assume that I'm not properly caring for my son and forcing there opinions of diet, nutrition and even vaccinations on me. The only thing I have to say about that is I have a team in place of specialist, therapist, and nutrionist whom I regularly consult with and if they tell me I need to be doing something, I am doing it. Just because I don't talk about it often doesn't mean it isn't being done. And furtermore I will vaccinate my son because the risk of him not being vaccinated is to great. Simple colds turn to pneumonia over night. I refuse to be so irresponsible and selfish and have him unvaccinated agaisnt something that could of saved his life. Your child who is healthy and has healthy immune system.. yeah great for them for doing so well being unvaccinated but like I said. What works for you child, does not work for mine.


So point in case, yeah people don't get it. They just don't. You just couldn't imagine the two complete opposite sides of the spectrum I deal with on a day to day basis and people's rudeness towards us. And I'm not complaining one bit about them. I love my babies very much. I feel for my friends Dawn, Sheila, Katie, and Christine whose little boy's are austistic. They have it much worse than us because people just look at them and see a normal little boy with a behavior problem. I just want you all to know, the next time you see a child and they look normal, don't assume nothing is wrong with them. And quite forcing your unwanted opinions on people. Trust us, we got this.