Parents of children that have disabilities

@TLChimes (4845)
United States
March 6, 2009 7:50pm CST
When you are first learning about the things you child faces, do you research everything you can get your hands on? Do you go out of your way to know the disability or illness almost as well as the doctor? Do you get really annoyed when someone else who has never faced the issues you have thinks they know it better then you? Or when another parent thinks your child's issue is less important then theirs. What are some of the things that touch off your Mother Dragon?
1 person likes this
3 responses
• Regina, Saskatchewan
11 Mar 09
I research. I talk to everyone that I think may know something. I phone doctors all over the place and gather as much info as possible. Then I take it all to my own child's doctor and make it clear he's not dealing with an idiot and that he'd better be straight with me to achieve the best results for my child. Knowledge is power. Other things that bring out the Mother Dragon in me are abuse (to my own or others), unfairness and bullying. I've worked with many disabled (in many different ways) kids and adults in my life, and just because they are different, doesn't mean they haven't the same rights and shouldn't enjoy the same privileges as other people. I once closed my restaurant to the general public during the lunch rush hour just so the disabled adults from the half way houses around town could come in off the street and be treated to a real restaurant experience after seeing them turned down by other eateries time and time again. I would set aside one day a week for them and though I lost money,(each person had a gov't voucher for only a certain amount of money and I didn't have the heart to tell them what they often ordered was more than the value of the voucher) I don't regret it for one minute. As for parents who think their child's issues are more important.............to them they probably are. But as a mother, my child's special needs and limitations will only be as important as I choose to make them. I want my children to have the same confidence in themselves as non challenged people have and I can only give them that if I make the choice to concentrate on their abilities and not their disabilities......... Sorry didn't mean to soapbox, but this issue is very close to my heart.
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@TLChimes (4845)
• United States
11 Mar 09
Soap Boxing is fine... This is a topic close to me too. See? I knew there was a reason for you and I to hit it off and not just because you make me laugh my bum off. I LOVE what you did with the restaurant! I know how hard it is to take my kids out sometimes because their issues make them stand out. We did find one place that we are always greeted with a smile! I bet those folks really looked forward to all you did for them. I too get very aware about what ever they are up to with the kids. Makes them nervous some times. I'm big on making sure the kids lead as traditional (normal) a life as they deserve. Like you said... abilities not their disabilities are what make them who they are.
1 person likes this
• Regina, Saskatchewan
11 Mar 09
It all comes down to the belief that we are here to help each other. People forget that. To single the different and treat them less than you would want to be treated yourself is just wrong........
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@TLChimes (4845)
• United States
11 Mar 09
*hands Sparks a bit of tea to chase the chill away* I'm glad I found you in the crowd. You are good people.
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@maximax8 (27048)
7 Mar 09
At 36 weeks pregnancy I found out about the spina bifida. I was terrified because my baby had appeared normal at my 20 week scan. He had a hole in his spinal cord and extra fluid in his head. I was offered an abortion and said no way. There are not many spina bifida children in my home country because most of them have been aborted. I know of just three other children that have it in the South West of my country. I have looked at the Internet to find out what to expect. My son was born at home and then spent three weeks in the special care baby unit. He had an operation on his back and a shunt put in his head. He can crawl but his legs are so weak for walking. He must have catheter care. Other parents really have no idea and don't think they know better than me. On the other hand professionals do and my son now hates his physiotherapist. He can scream all thought a session with her. I like knowing other parents that have a disabled child. We do try to support each other. Some of them know there is something wrong with their child but they don't know what.
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@TLChimes (4845)
• United States
7 Mar 09
They offered to abort both of boys (15 years apart) I told them where to go. Josh was supposed to have downs syndrome. He doesn't. And while Rowan has problems, none out weigh his worth to our world. It's tough to stand up for what we believe is right. You have walked a hard road. I hate therapy. It hurts me almost as much as it does the baby I swear.
• United States
7 Mar 09
Maxi- I went to school with a guy that had Spina Bifida in middle school and he was doing great. He was walking around, and doing things that every other middle school student did. I believe at the time he wore a back brace for support but he was just like one of us. Keep surfing the web for support groups. http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2642297/k.5F7C/Spina_Bifida_Association.htm That is the link for the Spina Bifida Association. I'm sure you've already found them, but just in case that's the link. Good luck to you and your son. Namaste-Anora
• United States
7 Mar 09
When my oldest was first looked at for having a BD (behavioral disorder) I can remember being really angry. I was already teaching special education, but I was still angry. I thought "No, not my daughter". I felt helpless, as if all the things I'd been taught as a special education teacher just weren't working with my daughter. I really berated myself, thinking "Why can't I fix her". It took a dear friend to set my head back in reality that my daughter needed me to do what I do best. So yes, I began researching every journal I could get my hands on via ERIC (a great website for finding actual journals on special education, and all other subjects). I wanted to know just what was going on, what was occuring in her brain functioning, and yes-I wanted to be able to converse with the doctors and know just what was going on. I don't think I ever really experienced anyone at the time coming to me who had never been through it. Most of the people I taught with had experience with special needs children. I will say that my mother didn't quite understand what was going on, and had a different way of "dealing" with my daughter's disruptions. To this day I still feel bad that I didn't intervene. I know what it means though to have someone think that their issues are worse then your own. And at times it does bother me. My daughter's issues were just as important as that of my friend if that makes sense. However, the joy of her story is that she's now 17 and an A+ honor roll child, and in control of her life. I'm very proud of the strides she made. By the way, I started a similiar thread just a few days ago under Special Education Teachers as a place for parents to ask questions of teachers. I'm hoping we'll find more special education teachers floating around Mylot that can be one more resource for those of us with special needs children. After all, it's all about the children! Great discussion! Happy Mylotting-Anora
@TLChimes (4845)
• United States
7 Mar 09
I have to retrain my mother in law for just that reason. She is very old world and goes to one extreme to the other.... either there is nothing wrong or there is over the top wrong. Sounds as if your daughter is doing great! I noticed a lack of special needs parents pooling their stuff too but If you dig a bit you can find they posted some neat things. Maybe I will check out the S.E. Teacher interest. Thanks for responding! Be Well,