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?

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.:p 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.:D

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 :rolleyes: ), 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. :confused:

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. :winky:

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. :winky:

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-:hug:

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. :hug:

Hope everything works out for you. Like I said before, will keep you two in my prayers. Promise.

Peace, and Love,
-Cgirl-

Pamster...

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

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!:eek: ) 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.

Thank you Cgirl, I really appreciate that, I know prayer does help. :)

It's been so hard today, he's been hitting and kicking a lot, I am waiting on his p-doc to call back and he hit me in my upper back near where I have a partially herniated disk so I'm not feeling so hot now. He got a time out for it but other then that what can we do? It hurt so bad I cried and he laughed, he always laughs when he's like that. Other times if I just have my eyes tear up, like when I wake up or get tired, he'll be concerned sweetly and ask, "Why cry? Aw, don't cry." So there is good behavior to brag about, but the bad is just getting worse and worse because we're having to adjust his medication.

He's been having a reaction called akathisia where he's really restless and iritable, but it's been over a week with the decreased dosage and he's a bit better then he was last week. But still it's been incredibly hard. I hate the idea of seeing him off this medication, it's an atypical anti-psychotic, but we can't have him hurting me and other people like at school where he's hit a teacher in the eye and hit them over the head with another student's cane. I don't know how much of this is just because of the medication issue or the fact that they got a new student in the class a month ago and he's having a hard time adjusting to that. He is also on his fourth teacher this school year, yup 4th teacher in less then 1/2 a year.

Thanks so much for caring Hoosier Mama & Cgirl. It really means a lot to have friends. I think I am gonna post in the autism forum about this...See what they think too. :grouphug:

He's been taking my chair more because he's home on spring break so yesterday was bad, he got it from me about three times...I am hoping things get better with his behavior, he's calming down some but I think that he's definitely still suffering from Akathisia. :(

I posted more about it in the Autism forum, and I am feeling a bit better today then I was when I posted here in this thread the other day. Still it's not very fun to have to hop after your chair while your laughing son drags it away taunting you the entire time unless Daddy's there to intervene. :p

Is it next Monday yet? LOL! ;)

I'm happy to know that you're feeling better....:)

Would you be able to (or even want to) get a motorized w/c for the house? That might be the 'deal-breaker' for him. Mine doesn't have a key, but I know they come that way.

Just a thought....

I already have one believe it or not and I can't use it because it's too slow when I have to run after him to stop him from flushing something down the toilet or dumping it out on the floor. I loved using it when he's not here but the tires are flat and it's not charged up, but I am glad to have it.

When we move to the new place I expect to be able to use it more since it's a bigger apartment. ;) I expect a lot of things to be better after we move, it's just getting there that is so hard, being patient is not my strong point. :p

LOL...my son complains that mine is too fast. I can book pretty good with it...that may have more to do with the specific manufacturer. I wonder if the motors can be tweaked at all?

Mine does have a delay feature for safety, which is aggravating to me...and nearly killed me when I was trying to seek safety during a tornado that killed my neighbors....safety feature, my rear end. :rolleyes:

Mine has a knob you can twist to adjust the speed, but I can't control it when its too fast so that's really where the trouble lays. The small apartment we live in just doesn't have adequate room to let me use it.

I do hope that the new apartment will be easier for me to use it during the day when I am at home and cleaning and stuff, that will be great. But I can already smell summer coming on and am hating it knowing it's going to be sheer heck if we don't have another aide set up by then.

If we do then it might be bearable. I don't know. I just feel so frustrated right now, but we're one day closer to tuesday when he goes back to school. He's got a dental appt. that monday so I might take him in to school if we get home in time, but most likely he'll be home monday too. At least the end of spring break is in sight. :)

Can you use a manual chair Hoosier Mama? I like my manual a lot but the power chair is really cool too, if only I could get to use it more. :)

Well down to two more days before he's back in school and I think it's going to work out just fine now. He hasn't taken my chair from me for a couple of days and has been acting better since we got out the inlatable pool three days ago. :)

Jonathan wishes he had healing powers so that I wouldn't hurt anymore. If I am having a bad night and need help getting to bed he will offer his shoulder and try to hold me up. He's 9. Very strong. I grew up with very sick parents. My son has a lot of compassion.

Your son sure does have lots of compassion.

Christine that is so great.

You have raised him to be a fantastic young man.

Donna

I am very proud of him. Thanks for the kind words.

What age will they understand
my sister has an little boy he 3years old and i have to say well i cannot read to you but we can look at the pictues he now i use an white cane and i wear glassess all the time.

take care cazzie

He should be able to understand in simple terms. Give him a basic explanation of your hydro and tell him that it makes your brain work harder to do certain things. That'll satisfy his curiosity for the moment, and as he gets older, his questions will be more sophisticated and involved. Just follow his cue and take them as they come. :)

LIZARD :)

Hoosier Mom's advice is good, she is talking about behavior mod. Ask your son's teacher about what approach they use in the classroom. (I once worked in class of Autustic children and there are so many degrees and behaviors.) It must be very hard for you. Is there an autism society near you? The ones in NJ (Where I once lived and worked in) offer respite care.
I can't imagine how hard it must be.

my daughter is 10,but she was 8 when my ms first started. She took it pretty hard when I first started getting sick. But with learning about ms,and have her concerns answered,it took a big weight off her shoulders.
Now on the other hand my boy is 5 now,but was 3 when it started,he knows that mommy is *sick*,but that is all he knows. but neigther one of them can take it when im a flare,or having bad ms days.
The worst thing for my daughter to get over is my memory problems. As it interfears in her school,and after school things. I cant remeber when and where she is suppose to be. And that is probably the worst thing for me too.
I hate the fact that my 10 year old has to be my memory help,but shes good at it for now.