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Old 09-24-2006, 08:11 PM   #1
Rocking4Epilepsy
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Default How do your children ....

React to you having a disability?

Are they old enough to understand?

And have you explained what you are going thru to your children?

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Old 09-25-2006, 10:21 AM   #2
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My daughter takes it in stride, although I think my memory and direction issues drive her nuts. I'm fortunate not to have a lot of problems with hydro or epilepsy, but even when I have a lousy day, she handles it okay because she knows that--so far--I am generally back to myself after a day or two. I don't know how much longer I'll be able to keep that up, and my health could collapse at anytime. She doesn't seem to be able to fully appreciate that yet, but I'm not sure if I entirely do, either. It's hard to internalize.

According to what my son's behavioral therapists have told me, he seems to have a very elementary understanding of my conditions, but I'm sure there's a lot he doesn't know, although it's hard to tell exactly what he knows, due to his inability to express it. He does continue to amaze me with what he seems to know, though, so anything's possible.


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Old 09-28-2006, 09:31 PM   #3
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My son (6) seems to take it in stride as well. He has rare moments of sadness, and he'll tell me that he wishes I could walk again. I remind him of how happy I am to be able to do the things I can do, like attend his sports, play on the floor with him, and kick his butt in checkers. There was a time when I wasn't sure I'd ever be able to do any of those things...so it's all a blessing.

He was only three y/o at the onset of my paralysis...so I tried to give him the vocabulary to express what he might be feeling. I have to say, he did challenge my authority from a wheelchair at the start...I guess he just had to make sure that the same rules still applied. I set him straight right away.

Last year, I spoke with his kindergarten class about disabilities. It went so well that I think I'll offer again this year. I'm in the process of applying for an assistance dog, so if that goes through, I'll be especially excited to go into the class and talk with them.

In a small way, I hope I can positively impact these children and help them to be at ease around people with disabilities. After my talk last year, I overheard one of my son's classmates tell the teacher, "Boy, Noah's Mom is...is....really COOL!" Best review I could ever hope for.
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Old 03-14-2007, 10:17 PM   #4
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What a fabulous group to have! I am a disabled mom of 2 and 4 yr old boys. It can be a lonely road at times. Lately I have found I am truly exhausted. It ebbs and fllows. I would love to know more about you all! Jen
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Old 03-15-2007, 07:22 AM   #5
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Quote:
Originally Posted by mommyjen View Post
What a fabulous group to have! I am a disabled mom of 2 and 4 yr old boys. It can be a lonely road at times. Lately I have found I am truly exhausted. It ebbs and fllows. I would love to know more about you all! Jen
I am really surprised this board doesn't get more action. Jen, welcome, and thanks for posting!

I am so glad my kids are older now, and that my condition has improved. It makes life so much easier! When the kids were little, it was so tough, because my sweet son was finally dx'ed autistic after I screamed and yelled at his idiot docs for nearly2 years. Of course, the stress threw my epilepsy into utter chaos (thank God my hydro was behaving itself ), but once we got the proper dx and treatment for Drew, my health picked up, and now, it's a lot less of a balancing act. I feel for you, dealing with this and just hope it gets easier over time.


(((((((((((((HUGS)))))))))))))),

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Old 03-17-2007, 03:08 PM   #6
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I am an amputee who lost the leg to the hip just about and my son is autistic so it's different for us then say it would be for a neurologically typical child and me for a mother, but it's all I know. He's ten and doesn't seem to care and I'm sure he remembers when I walked around using an artificial limb, but it just hurt so much I went back to using a wheelchair. He can be mean about it at times, taking my chair and running off with it when I am in the bathroom, making me have to get up and hop after him. It's really a shame he can't understand that doing that is wrong, and hurts me to hop like that. When he takes it from me in the bedroom I have to get on the floor and crab scoot out to the living room, I just cannot take hopping that far and he just laughs.

I bet none of you have that trouble do you? *sigh* My life is so darn complicated at times. I lock the chair but he's so strong he just yanks it away no care that it's locked. I would have to say that he knows it's wrong but he just doesn't care, it's all a game to him. So it's hard to live with being an amputee as high up as I am, but add in his autism and you can imagine life is anything but peaceful here at my house. Not meaning to drag the convo down, just needed to vent and saw this thread to do a little of that in.

I am surprised this forum isn't used more...I will be checking back now that I have found something to post to. Thanks for starting this thread Rocking4Epilepsy.
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Old 03-18-2007, 09:21 PM   #7
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I am sorry to hear of your troubles. Life must be very difficult for you. I worked with people with developmental disabilities in my early twenties, before I became disabled myself. I understand autism. But, I do not understand what your situation must be like. I've always been on the outside looking in. I will keep you and your son in my prayers. Promise.

Peace, and Love,
-Cgirl-
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Old 03-19-2007, 02:10 PM   #8
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Thank you cgirl, I am feeling a lot better today now that my son is doing a little better, he's having a reaction to his medication called akathisia and it's been really hard up until today where things seemed a little better and its been a week on the reduced dose so I think it's finally starting to get better for him. It's been a rough year so far, but I have hope for a better summer if we can get a few things done. *wink* like get moved into a new place where there is an on site park for him to go play on and get him off the one drug this reaction is from and started on something else that might work better for him.
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Old 03-19-2007, 07:03 PM   #9
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Hope everything works out for you. Like I said before, will keep you two in my prayers. Promise.

Peace, and Love,
-Cgirl-
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Old 03-20-2007, 01:59 PM   #10
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Pamster...

I'll be keeping you both in prayer as well.

I don't know a lot about the different kinds/levels of autism and which is the best way to guide them in these instances....so I admittedly may be way off here....but I'm guessing that there must be some reward your son perceives in making a game out of taking away your w/c. He's getting something out of it, or else he wouldn't be doing it. It's possible that the 'reward' is your reaction and/or the action of you hopping/scooting. Each time this happens, it reinforces his behavior.

I wonder what would happen, over time, if you simply didn't react? And that would include not responding to him in any way, shape or form as long as your w/c is not accessible to you. Again, I don't know how your son learns best, (or how long you'd be left stranded without your w/c! ) but it may become more desirable for him to have your interaction again, rather than trying to elicit another hopping exercise from you. (?)

I'm sure you've tried everything imaginable, so I hope I haven't insulted you with my simplistic advice. I only want for you to have your w/c!! That must be wearisome for you to go through each time. Please let us know how it's going.
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