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by Sparkleplenty

Last Post 114 days, 6 hours Ago


Please share your experiences with disabled or people with special challenges
Jul 17, 2008 | 11:43 PM
Category: Faith
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I have often thought after living with a person with special needs for half of my life, that there really is not a forum or support group for people who need it.  Living with someone who is mentally and physically handicapped from birth or who has some kind of disability can be a devastating experience for someone as well as a life learning experience that few others will ever understand.  It molds you as a person and quite often, people just don't get it.  So please, tell us your story.

I grew up with a mentally and physically challenged sibling.  Although I loved my sibling very much, and still do, the sacrifices i had to make as a child and teenager sometimes seemed unfair and grueling because none of the other kids had to do it.  In fact, even in my own family, the duties were sexist in that regard, some of us did all the work in this area, consistently.

By the time I was 5 years old, I was told I was mature beyond my years, not in a bragging way, just that I had to take care of myself because everyone else was busy a lot.  My parents were rarely at my sporting events, my mother and father tried to be available, but to be honest, they just weren't.  And the majority of the other kids were uncomfortable with the situation.

My weekends were spent in highschool babysitting my sibling, while most of my friends were out partying.  Although it changed towards the end of highschool, I still spent my entire young life wrapped around someone else's medicine or school schedule.  And mostly, because my parent's schedule wrapped around it.  

People often accuse me of being hard to understand, and I think maybe it's because they dont' know all the sacrifices I made as a kid, that they never made until they got married and had children.   So please, share your stories, and know that someone else understands although the majority of the world does not, and never will.  People can be judgmental, until they walked in your shoes. 

I still feel today that my sibling was a blessing, and i pray every day for her.  God sent her to us for a reason, and I just wish people could see that. 

I do have several friends from similar backgrounds, and we always kind of had an understanding.  Life experiences like this are never an excuse for anything, but they are ultimately, a good explanation for life's values, opinions, and thoughts.

The sacrifices we made growing up made us take life more seriously, much sooner.  And that seriousness, was sometimes matched with the work hard, play hard attitude.  And sometimes, you were just so burnt out, you just need to do nothing. 

I think my sibling is my guardian angel.  She laughs when i tell her that.  And that makes me smile.

 

 

 

 

 

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rosie read my blog view my photos
Jul 18, 2008 | 8:38 AM

i grew up with a physicaly and mentaly challanged aunt.. my grandparents died on the same day and she was my mothers only sibling... my mother was 9 month pregnant with her last of eight.. it was a hard time, another child, my aunt was... we had to watch her alot cause taking her places was just to much...she died at 86 about 9 years ago and she was with my mom most everyday, all day, so my mother devoted her life to her to..and her 8 kids

now i have a grandson with downsyndrome, lol hes a challange too, but because of better education for them, it will be easier to handle him..
Sparkleplenty read my blog
Jul 18, 2008 | 9:20 AM

Wow, you had quite a change in your life, you weren't used to it, and suddenly your whole life changed. I never knew anything different because my sibling was older. And although Down's Syndrome children and adults are a challenge, they are so happy aren't they..my sister went to school with many. I hear now that thyroid can cause down's syndrome if the mother has it, but I'm not sure if they ever proved that for sure.

Yes, education is much better. Thanks for writing. I never really felt like it was anything I needed to talk about because it was so normal for me, I never knew anything different. But the older I got the more I realized that she was a part of what made me hard to comprehend. As well as my other family members. It affected different siblings different ways depending on multiple reasons. But she was always seemingly happy, and made us laugh. And she still does.

I'm glad that you told me. Good luck. I'll keep you in my prayers.
dwheeler6201 read my blog view my photos
Jul 18, 2008 | 11:34 AM

I was a teachers aide for 12 years - 9 spent at Hubert Wheeler State School and the others at a daycare/preschool for disabled children.

At the daycare, our children were medically fragile also. One year we lost 9 people or children connected with our center in the space of 6 weeks were actuall doing cpr on one child when we got the call that another had passed in her sleep.

Our children had every disability in the book and I dearly loved every one of them. The class I usually had were the non mobile children ages between 8 weeks and 12 (we also had an after school program). Later,I taught the 2-5 year old Language Group also. When I left there I went to the state school.

I had a class of non mobile/non verbal children there ranging in age from 5 to 21. The children at the state school stayed in our class room until they became mobile or left the school for some reason. The wonderful thing about being at the state school was that most of the kids I had at the daycare were in my class. I felt as tho I had helped raise them. Some I actually did keep in the summer when school was out, or sometime I would take them home just to give the parents a break.

I loved these kids as much as I loved my own and that is the truth, but I have to admit I thanked God every night for my "healthy/normal"
kids. I know me, and as much as I enjoyed taking care of them for 8 hours a day, I honestly don't know if I could have done it for 24 hours a day for the rest of my life.

I used to wonder about the siblings and how it was for them. I know that some of these children re
Sparkleplenty read my blog
Jul 18, 2008 | 8:09 PM

Yes, it is difficult for the children, but I think particularly hard on the parents because if they have a lot of other children, it complicates a lot. By the end of the week, my parents just needed time out to have fun, which I understand, they needed that, but still, I felt kind of cheated out of a lot of adolescent experiences.

Now I figure everything happens for a reason, so it's not a big deal.

Thanks for sharing, if you can finish your message that would be great. Feel free to talk anytime.

And wow about all the kids and others who died, that's really weird, I'm glad you survived!
Sparkleplenty read my blog
Jul 18, 2008 | 8:25 PM

Also, as far as dealing with it 24 hours a day, my sister went to school like everyone else, so Mom got a break. But early mornings and late afternoons were a rigid schedule, as well as the evenings. On weekends, she took naps and played a lot, so she wasn't a difficult person to be around, it was more the personal care, hygiene, wheel chairs, and other medical issues that really consumed time. She could never walk or talk, and was never potty trained. She is a big baby as far as caring for her personally. But I always knew she was smarter than we gave her credit for, or at least that's what it felt like to me. She had pretty good timing on occasions and knew how to annoy us to joke around with us. I think she comprehended far more than we realize but there is no way to test it since she can't speak. She can be really funny in her own way. She can be very stubborn, in a funny comical way.

Yes also, it is easy to love the kids just like your own. I bet it was even harder to let go of them.

thanks.
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