React to you having a disability?

Are they old enough to understand?

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

Hugs

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.


LIZARD

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.

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)))))))))))))),

LIZARD

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.

My 9 yr old son has a good grasp on my limitations that MS causes for me, and he really is good about it. Sometimes it makes him sad, but for the most part he deals with it very well. He was 6 when I got the dx. I also have a 6 month old son, and I don't anticipate any real problems for him in relation to MS. He won't ever know me to be any other way. My older son is a big help with the baby and other things I ask him to help me with, which has been alot lately. I'm in the midst of a bad flare that has been going on since the baby was 6 wks old. Fun!