A Different Kind of Guilt

675 Views 9 Replies 3 Participants Last post by mamarhu, Apr 18, 2006

mamarhu

Discussion Starter · Apr 6, 2006

This is mainly a get-it-off-my-chest, does-anyone-else-feel-like-this-sometimes post.

Ds went for an evaluation for SS Disability yesterday, and I talked with the psychologist today. He feels that Ds is "significantly disabled", and will recommend that we get the disability $. WOOHOO! Sort of. The eval tested all the types of things that Ds cannot do, and he came out looking a mess. But at home, this kid is SO un-disabled. Of course I know that it is because the environment and my demands of him are tailored to his needs and abilities. But he and I mesh so well that it is perfectly comfortable to live with him; he thrives in an unschooling situation, and learns in his own way. He is, by far, my "easiest" child. I have no doubt that this creative, intuitive guy will find his niche in the world. Probably a non-traditional path, and maybe never entirely independantly. I don't know if he will ever read, but I know that he will do just fine in life. I feel a bit as if it is an act to get the disability. No, I didn't coach him to act dumb or weird. But I don't really believe he is as disabled as the tests make it seem. Please trust me that this is not denial. Socially, he does OK with one close friend at a time. He cannot do groups at all; even 2 kids in the room with him puts him over the edge. But there are jobs and lifestyles that will accomodate that, or perhaps he will gradually learn coping skills. Just an example of his quirks that make school unworkable, but can be accomodated.

In my job, I work with moderately to severely developmentally disabled adults. It is so hard to see my son as having similar issues. He functions on so many levels that my clients do not even approach. It isn't that I think services should only go to the most severe cases, exactly. I guess I have a hard time accepting that we are entitled.

Thanks for letting me get this out. I feel that I need to defend our worthiness IRL, to family and friends. I want them to see this as deserved assistance the government is obligated to provide; to make it clear that I am not milking the system. But in my heart, I sort of feel like I am.

I need the bag over the head smilie.

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cajunmom

· #2 · Apr 9, 2006

I go through the same thing, I am a newlywed (almost a year) with an 11 yr old step son who is "classified" as severly mentally retarded. I read what you wrote and its almost as if you are describing my son all over! At home he really is himself and around doctors often shy and awkward. He doesn't know how to talk really (can only say about 60 words) but will hardly ever do it in public. Sometimes I wonder how he would fare on the same tests if I could administer them myself at home in his normal environment lol. We, as well, also recieve SSI payments and sometimes it seems like i'm being "paid" to care for him and he is such a joy to me that I can't wrap my brain around that. But honestly, I wouldn't feel too bad about it. These children need to work harder and need more than normal children and (if you're like me) the extra money REALLY helps out. We usually spend his payments on things to help him learn, and/or improve motor skills so the money really benefits the children.

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mamarhu

Discussion Starter · #3 · Apr 9, 2006

You caught my point exactly. If we get it, the $ will enable me to work a little less, giving me more time with Ds, which is really what he needs more than anything else. And he might start part time in a school we've found that looks like an ideal fit. I know it will benefit him - it's not as if I will suddenly run out to buy jewelry and furs

But it still feels awkward.

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cajunmom

· #4 · Apr 10, 2006

It does still feel awkward lol. But thats great that you found a good school. I know my son enjoys school immensely and even cries when he has to come home sometimes LOL he has a great teacher and I try to be involved as much as possible. Another thing I wanted to look into was summer sports but I'm really not sure who to talk to about it. Any suggestions? I'm going to send a note to school with him and ask the teacher but that's the only person I could think to ask

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mamarhu

Discussion Starter · #5 · Apr 10, 2006

www.specialolympics.org

www.thearc.org

Special Olympics has all sorts of programs for kids and adults. The ARC is another national resource, with local chapters in many areas. The programs available vary by chapter, as they are independently run.

My local Parks and Recreation Department has several programs for inclusion of kids with disabilities, but I hear the area here is quite unusual as far as that goes.

Also, consider private lessons if you can. Martial arts teachers might be open to individual training if a class setting didn't work. I could imagine an arrangement with private coaching to get a kid ready for team participation in soccer or baseball for example. Maybe a college Phys. Ed. major who would like to earn a couple bucks?

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cajunmom

· #6 · Apr 10, 2006

Thanks for the links! I've only had my dss with me for a year so I'm still learning the "tricks of the trade"...and the private instruction idea is great

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emmasayshi

· #7 · Apr 14, 2006

What's his DX?

Quote:

Originally Posted by mamarhu
This is mainly a get-it-off-my-chest, does-anyone-else-feel-like-this-sometimes post.

Ds went for an evaluation for SS Disability yesterday, and I talked with the psychologist today. He feels that Ds is "significantly disabled", and will recommend that we get the disability $. WOOHOO! Sort of. The eval tested all the types of things that Ds cannot do, and he came out looking a mess. But at home, this kid is SO un-disabled. Of course I know that it is because the environment and my demands of him are tailored to his needs and abilities. But he and I mesh so well that it is perfectly comfortable to live with him; he thrives in an unschooling situation, and learns in his own way. He is, by far, my "easiest" child. I have no doubt that this creative, intuitive guy will find his niche in the world. Probably a non-traditional path, and maybe never entirely independantly. I don't know if he will ever read, but I know that he will do just fine in life. I feel a bit as if it is an act to get the disability. No, I didn't coach him to act dumb or weird. But I don't really believe he is as disabled as the tests make it seem. Please trust me that this is not denial. Socially, he does OK with one close friend at a time. He cannot do groups at all; even 2 kids in the room with him puts him over the edge. But there are jobs and lifestyles that will accomodate that, or perhaps he will gradually learn coping skills. Just an example of his quirks that make school unworkable, but can be accomodated.

In my job, I work with moderately to severely developmentally disabled adults. It is so hard to see my son as having similar issues. He functions on so many levels that my clients do not even approach. It isn't that I think services should only go to the most severe cases, exactly. I guess I have a hard time accepting that we are entitled.

Thanks for letting me get this out. I feel that I need to defend our worthiness IRL, to family and friends. I want them to see this as deserved assistance the government is obligated to provide; to make it clear that I am not milking the system. But in my heart, I sort of feel like I am.

I need the bag over the head smilie.

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mamarhu

Discussion Starter · #8 · Apr 15, 2006

The Dumpling's dx is PPD-NOS. My take on that is that it is a more dignified way to say that he is way unusual, but doesn't quite fit any pattern. They test his IQ at 78, yet this is the kid who has been intelligently discussing the ethical treatment of prisoners, and asking questions about the Civil War and slavery that I can't answer. In the evaluation, he barely spoke, didn't make eye contact, and squirmed and fidgeted off the chair. In his brief but disasterous public school career, his IEP included "Speak to him in simple sentences, with single step directions". At home, I read books to him with adult vocabulary, Harry Potter, Series of Unfortunate Events, and he comprehends not only the story, but the irony and puns as well. At 9, he can't read or write, but he has amazing recall, unique sense of humor, and a dramatic storytelling flair. I imagine that if he had been born into a preliterate society, he would have grown up to be the clan historian/storyteller around the fire on cold winter nights. I'm not quite sure how these skills will play out in today's world, especially combined with mild agorophobia. But somehow, I know he'll be fine.

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cajunmom

· #9 · Apr 18, 2006

Just wanted to let you know that I called ARC and found a summer camp for my ds. They do outdoor activities blended with educational/motor skills. Its kinda expensive but I think he'll benefit from me. Oh! And I got a letter from his school saying that he doesn't need to keep attending school during summertime which means that his brain is still retaining information!! Yay!! Anyway I'm expecting company so I gotta jet. Just wanted to thank you again for the info. You're awesome!

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mamarhu

Discussion Starter · #10 · Apr 18, 2006

Hooray, Cajunmom!! I'm so glad you're finding resources in your area. The summer camp sounds like a fantastic experience.

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