Isolation

Having a special needs can be just as disabling to the parent sometimes as the child. Bryson, my dear child, you know I love you with all my heart and I cannot imagine what you have to go through everyday. What the world looks like through your eyes, what each new encounter feels like or looks like, and how you process all that is going on around you. I do not understand the tantrums half the time or the rages and often times I do not understand the tears. I try very hard to take a deep breath and disconnect for a moment. To realize that you probably do not even know why your emotions are taking over either and why some days are better then others but recently this has become harder for me.

You have been having a harder time when we go out to eat, when we are in unfamiliar situations, and a harder time controlling your emotions when you plain and simply do not want to be doing something. This often times leads to a scene when we are out in public and as hard as I try to remain calm, there is always at least one person starring at us (usually multiple). I have gotten better at not caring what other people thinking and I just kept telling myself that we are working through it and that things will get better but I am unsure of that myself these days.

Knowing that an outing will be difficult has caused us to do it less often or with less people. There are only certain people know we will go out to eat with as I know they will take it in stride when you draw attention to our table. I find us making quick "escapes" from social situations with peers when you are start winding up so not to have a fit in front of your peers. I seem to find places to tuck inside of so that people can only stare at our backs and not make eye contact with me.

I know often times you cannot control these emotions and sometimes I need to know when to throw in the towel and just stay at home because it will not be a good day but I feel as this isolates us, me, even more. In order to provide for you and continue to be your support I need to keep my sanity also. I do not want to ever resent your disability or to use it as an excuse for us not to continue to live life but I feel that we are starting to lose that balance. That as you are getting older and bigger you are becoming harder to control in certain situations and we know it is not for lack of consistency or behavioral expectations as we always have those. I know that if we have a hard time now what will life be like when you are 12 or even 18 for that matter.

A very touchy subject that goes with this and one I do not always go into great detail on in here is your medication. This is a personal choice that a parent has to make on their own and the pros and cons must be considered. For you, it is a choice I have made and not an easy one. Sometimes the medications seems to make a world of difference and we get through the day without any behaviors and then other days the side affects seem to be worse then if you were on no medication at all.

The thing with the medication though is it is never an easy balance. We need to give it at least 6-8 weeks per medication you are on to see the full effects and in that time you could have increased irritability due to being tired from the medication (which is a behavior we always hope the med will decrease), other times you have bathroom accidents because of the medication increasing the fluids you intake, and the list goes on. But then, when we seem to find a balance, the few times we have, you are a happy child who loves life and can slow down enough to see what is going on around you. When the medications are right you do not throw yourself down the stairs or ram your head into walls. You are also able to sit still and slow down your speech to try to communicate.

I know I am rambling a little but I have also been frustrated with the whole situation lately. I want what is best for you. I want you to succeed, and I want to make sure I am doing what is best for you. You are unable to express to me what you want, how you feel, and what would help make the world a better place for you so it is all such a guessing game. I wish I was a little better with probability and maybe we could cross off options before they were even considered!

Well, buckle up baby because it seems it will be a bumpy ride and we will just hang on tight. I know that the light at the end of the tunnel shows its self on occasion and that is what we hold on to.

I love you
Keep on Truckin
Mom