Friday, July 8, 2016

Unsettled

So, Don has gone to pick up Ben and Megan from the camp they've been at , since Monday.
I didn't want to go....I found it extremely difficult to force myself to go.....so what does every good wife do......gets her husband to go on his own.
Why didn't I want to go, you ask?
Well.......Don and I took them both to this camp on Monday....it's a camp run by the group that run the programs that Ben and Megan attend when they are at home, during the week.
So, obviously, there are a lot of disabled adults in this program and at this camp.
You see, I'm very well aware that Ben and Megan are disabled.....but to look at them...especially Ben....you wouldn't know that they are.....
When we went with them to take their meds to the nurse and to take them to their cabins....you really get an overwhelming slap in the face as to how fortunate you are that our kids are at the level that they are.....
I have this problem whereas I THINK that our kids aren't as bad (disabled) as other kids we see....I've noticed this when I've had meetings at their program office and I see the other adults.....some are confined to wheel chairs, some have to be led by the hand, some can't talk very well , some can't handle their emotions very well and are very loud and scary, some have to be kept on a 'short tether' so to speak, so they don't take off, some are violent and unpredictable.....they are just so different then our kids.
When we took them to camp ....which I and they had been looking forward to for months....I found that observing all the various degrees of disability that other adults have to live with....scared the heck out of me.....all the way back to our camp, I sat very quietly to the point that Don was questioning what was wrong.....I struggled with my feelings and the only description I could come up with was...unsettled.
Even though I had been looking forward to the break....not necessarily from Ben but definitely from Megan.....I didn't want to leave them there, surrounded by these people that scared me but fortunately, Ben and Megan knew and felt comfortable with.......but I had to,...had to pull on the mom armour , let go and drive home.....it was then that I decided that I wasn't going back....I didn't want to be smacked in the face again....I didn't want to look into the faces of all the others that Ben and Megan spent the week with, ...I guess I just didn't want to face it all.

Maybe I'm just too old.

Anyways, Don has gone to get them.....I convince myself that that's alright because I do most of the taking and picking up for the kids....it wouldn't hurt that it was Don doing it this time.

I've struggled with this before.....when Ben has talked about moving to an apartment building that houses other disabled adults.....they have workers there to help them ....and I can understand why Ben wants to go...I really do....he's looking for that independence that most young adults desire....
But when I've seen the people that live there, I immediately think....'oh Ben won't fit in there, Ben is higher functioning'.....

Am I seeing my children through rose coloured glasses , so to speak?

Yes, they are disabled, ...yes, they can't live on their own.....yes, I work with them every single day, over and over and over.....hoping they'll achieve each day a tiny bit of independence....I know that they'll always need someone to look after them, I know that they'll never live on their own, but every day I work with them, everyday I remind them over and over, like a needle stuck on a broken record...( now that really is dating myself because a lot of people today wouldn't know what that expression meant!) ....I remind them to wash, to brush their teeth, do their hair, take their pills.....to wear appropriate clothing, to act in public in an acceptable way, to be aware of others, to not act inappropriately, to consider others ( when I tell them that I need a few moments to myself) .....and on and on it goes....it's like you push the repeat button every single day.....
But when I look at these other disabled adults, I realize that we are fortunate , that Ben, Maya and Megan are fortunate.....the fortunate part is that my kids are accepted into this world , because of their disabilities , the unfortunate part is...because of their disabilities and even though they're not as low functioning as a lot of the people that they were with this week, they are still not accepted by their peers that are average functioning....they are not accepted at other adult functions , there isn't any group at any church that they would fit in with, that they would be accepted in, without feeling sorry for them.
I am physically disabled, and I've worked very hard to be accepted by other adults, to not be treated differently ...I worked hard, my mom worked hard...all those days of physio therapy, day in, day out....but it could only go so far, and I had to figure out things on my own. Unfortunately , with intellectually delayed adults, their brains are damaged, and in the case of our kids, damaged before they were even born , through their birth mothers' drinking....they can't figure things out on their own.

Does anyone deserve to be disabled...no....does anyone want to be disabled....no......
I remember, quite clearly when one of our kids was about 7 or 8, he was upset and crying...he said to me through his tears....'mom, my brain is broken'....
I felt so helpless.....

Our son Ben, our daughters Maya and Megan...they look to their older siblings who are married or are in committed relationships....and they want that too....they want that desperately....they accept their limitations on some things but when it comes to the emotional level...they are just like everyone else ....will they achieve that in their lives....it's hard to say...but I hope so...I think everyone deserves that in their lives....someone that loves and cares about them in a relationship that isn't with mom and dad, or brother and sister....

So, I sit here at the trailer, waiting for Don to bring Ben and Megan back....and all these thoughts run through my mind....some are a little disjointed and out of context....but it leaves me challenged as to how I can help them more to be ready for this world when Don and I are no longer here to be able to do it for them.





~ Marie

1 comment:

Loretta Hill-Finamore said...

Bless you and thank you for sharing. Powerful food for thought.