I admit that I do not read other disability blogs very often anymore. They make me angry, sad, and frustrated, frequently, and I don’t expect other people to read my blog. I always appreciate comments on my posts, but, lately, I don’t feel like sharing all that is going on because I don’t think it is constructive.
The one invaluable lesson I have learned as a parent of a severely disabled, undiagnosed boy of twelve is that everyone handles disability differently and from their own unique perspective. The actions we choose to take or not to take in regard to our children have to be viewed first and foremost from our perspective of our own unique challenges and lives. Critiquing others’ actions towards disability feels like a waste of time but telling the stories of our lives I find to be a tremendous gift.
I am embarrassed that I have my son living in conditions that are not as good as living at home if there were additional assistance for his care. I am embarrassed that my son is attending a school that I find so inferior to his needs for comfort and happiness that I have been sick about it for days. I am embarrassed that my son is not with me at home right now or that I am not finding a cure for cancer to make his absence worthwhile.
But if my son were here with me right now, I would be exhausted and troubled, too.
My point is that I don’t want to write about this anymore. I want parents to go advocate for their kids, normal and disabled alike, and I will do the same. I do not want the burden of knowing my son gets to go outside for a walk at school everyday because I demanded it while the teacher believes some of the kids don’t care if they go out so they do not. I hate knowing there’s a girl in my son’s class who can communicate really well with gestures and an old lousy assistive technology device, and she’s left to sit in her wheelchair, ignored, as the teacher and aides change diapers and hang feeding bags.
I am tired of disability, and I am hugely embarrassed by that.
A hiatus from writing here seems appropriate as I am too full of emotion to be helpful to anyone, and I do not wish to offend anyone. I wish I were still angry as that brought me great strength, but now I am embarrassed and disgusted with myself and the community my son lives in and non-learns in. But I’ll be working diligently to change both my attitude and my son’s environment. After all, he is one of the four loves of my life being my youngest son.
10 comments:
Dear Kelly, surely you have nothing to be embarrassed or disgusted about yourself. You are already a wonderful and wise advocate and I wish you the best of courage in continuing to look out for all the souls you find yourself responsible for. And when you come back and write some more about your and Christopher's story I will be happy to read it. All the best, in admiration - John
I am sorry that you won't be writing here, anymore, because I found you to be a powerful, authentic voice. I understand your feelings, though, and intentions and wish you the best.
I, too, am sorry. You would be one of the few, the only I know, parent writing about this transition that you and your son are undergoing.
That you are doing it now, while you are able to advocate and be active, is wise. Your son wasn't suddenly placed there due to other upheavals. Many times this placement occurs when a parent is truly disabled or dead, and the child/adult ends up without anyone working with him and the facility for a good transition.
In the meanwhile you will be missed. Although I'm not a big commenter I want you to know that I learned from you. Please come back when you're ready.
Dear Kelly, like John I can tell you that you have nothing to be embarrassed or disgusted about with yourself. The thing is, and I think you should remember, is that you came to these decisions with a heavy heart. It is nothing that you haven't struggled with and simply brushed your hands of. I really believe that yours and your son's is a story worthy of telling and reading. You are a gifted writer, someone who makes novel and compelling connections. Whether it is a Disney movie and your own wishes, the awareness from your dog vs. the woman you generously visit and the child you fiercely love and care for, society's appreciation and celebration of the bird vs. the needy and the disabled, right under their noses.... It is all thought provoking and such a refreshing read. Unlike other blogs, you are not cursing the world, making assumptions, feeling entitled, and wallowing. You are genuinely struggling, trying to understand, trying to figure it out. So sad as you are, frustrated as you can be, I find your writings very uplifting and thought provoking and very real.
When you didn't write for months, I always came here to check on you. I wanted to know what was happening. I wanted to know why you went to Boston of all places. What happened to your other boys while you were with the littlest one. And then there were times you wrote, when I silently devoured your story, even coming back to reread the same entry. There was nothing I could meaningfully say and came and went, but more than once, wished there was a button to click to just at least say that I was here and listened and that it mattered to me.
All to say, if you find that writing helps you, than do so! Don't stop, just do it elsewhere. But if and when you decide to come back and share your story (even if it's tomorrow - that would be nice - LOL!) I'll be reading and I'm sure others will, too.
And just one more thing. Your son is really lucky to have you as your mom. And so are your other boys. That you took your little one cross country looking for answers, that you knew that your older ones would honestly tell you if they thought the facility was not appropriate for Chris... it shows a lot about your character and
"... I am too full of emotion to be helpful to anyone ..."
Don't think I ever said this to you before ... you are wrong.
Take a hiatus if you need one, but don't think for an instant that your posts are not extremely helpful to many. We will miss you.
Well, I won't ... I have your cell number ... ;)
Continue to be kind to yourself. I believe it will benefit both of you.
Barbara
Kelly, I have never posted before, but have read many of your posts and you have really opened my eyes as to the many emotions of placing your child in a facility. My daughter is 11 years old and is diagnosed with severe autism. It has taken me 10 1/2 years to convince myself that she will someday have to be placed in a group home or facility in the future, as I, unfortunatley, will not be able to care for her forever. Somewhere in my mind's denial I thought I would be able to care for her indefinitely. Crazy things this mama thinks...;).
Anyway, I just wanted to let you know that I have learned a lot from your blog and I hope that you can return to writing in the future. Until then, I hope you find peace with your choices and fight the feelings of embarrassment and guilt. I still try to fight them every day.
I have been reading all of your posts and found them powerful and moving. What you write is worthwhile.
Kevin
I, too, read everything written here and find this blog thought-provoking and valuable.
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