PanthersKissOPMiddlesex County, Massachusetts USA967 posts
I was sent a survey for parents of children with disabilities, and I completed the survey and then proceeded to fill out the feedback little box.
Well, I started expressing my views on how every article is aimed at two parent families, with two incomes, stablity, but have a child with disabilities...which I can connect to those emotions, but not the two parents, two incomes.
So I told the survey people, that I wanted to see an article that represented the realities of single parents with just one income, the other parent not involved and the emotional and finacial impact that has on the single parent, and family.
Without many resources available, like support groups aimed at children that suffer multiple medical conditions. And when their condition is so rare, that there is no one else to relate to, no one that understands the emotional/psycholoical isolation that can set in for both parent,and child.
I then went on to explain how I have to fight for every right my daughter is entitle too, like special education, with the emphasis, that on top of that she will need other resources due to her "different special needs".
I fight the school system, fought SSI for three yrs...I do everything.
Ok...so I am yapping away like now...lets get to the point here.
The survey people were so impressed by my statements, that the magazine is writing an article on what I expressed and also invited me to reach out to the readers with my support.
I never meant to make such an impact, I am just used to being outspoken, also I advocate on behalf of those that do not have the courage to do things on their own.
Ok so late last night I find an e-mail from the editorial manager, and she thank me for all I had brought to their attention, and told me how the article will be done.
I am not bragging, just thought I shared that sometimes we do make a little difference by standing by our belief and not being afraid of speaking out.
I am sooo pleased for you. Be proud honey, stand up and take a bow. We need women and mothers and if it applies,(fathers) to do just as you did. Thank God you feeled it out, huh? So, I guess surveys do count for something. Kat
PanthersKissOPMiddlesex County, Massachusetts USA967 posts
Thanks...yes there are so many parents in my situation, but still there are not many that can understand my emotions, my daughter has 11 medical conditions, making her a very different and rare type of special needs.
I suspect many will be affected in a good way by your speaking out. It is good that you chose to do this. Your daughter is fortunate to have you in her life.
My son had the grand mal seizures from Epilepsy. He was a smart child when he tried. When he took his dilantin and phenabarbitol it would help him. The doctors said he could outgrow it even though it was hereditary. I remembered when my ex had a seizure while she was driving and I was in the passenger seat. When all you have to depend on is you it does make you stronger. You have to take the initiative and make the difference. It can be strange when you are the parent and they have to depend on you. You have to trust what you are doing is the best thing. Going up against authority is sometimes unavoidable but they have to see your side of it. When I worked at Handicapped Services I met many people that had special needs. But many of them were very smart because handicapped people have to make up for their missing whatever. Working with them makes you more aware because you can benefit by overworking all of your senses even though you don't having the missing sense or disability.
PanthersKissOPMiddlesex County, Massachusetts USA967 posts
I like what you say here .................
"Going up against authority is sometimes unavoidable but they have to see your side of it. When I worked at Handicapped Services I met many people that had special needs. But many of them were very smart because handicapped people have to make up for their missing whatever. Working with them makes you more aware because you can benefit by overworking all of your senses even though you don't having the missing sense or disability." ..............................................
The reason that I am so confrontational, is because the school system as well as SSI, and other agencys...try very hard to convince you that the resourse are not "available".
Yet I get all my legal information together and present it to them, and will state, the law says my daughter has this right I am requesting, the law mandates that you accomodate her, I am excercising her right because "I am her voice"...I also have the team of medical doctors that take care of her backing me up with my request, because I ask for all the "facts" to be written.
It's like having a one man mission, I am the mission, and I will not fail my child.
If anybody was to see my little girl, she "looks perfect" that is because all her disabilities are internal. But she has the gift of being very smart, and is also an artistic genius...but she is very delicate, sometime if I touch her, it can cause physical pain for her, I have to gently hold her.
I agree with what you say working with the disable makes you of your senses.
I wake up nightly, check her breathing, ask her how she is feeling, and not ever take a minute for granted. With her every minute matters, it makes a difference that has changed my life forever.
My friend, Taboon had to tangle with them. Cherie made Nene her very own vent thread a while back. I really miss working for Handicapped Services. My supervisor was blind and she had to proofread my Braille typing. I can remember her telling me that I didn't have to indent with Braille. Who knew? Then I would do the tapes for her. She would be interested about a book and I would read it onto the tape. I had to become aware of coughing, getting interested in the book myself, lol, and tonal inflection (if I had a cold it showed up on the tape). The department head went to bat with the college. She got the handicapped stickers for the handicapped people and got the college at Wichita in 1983 to charge violators for parking in handicapped spots. She got all the elevators, rest rooms and class rooms Brailled. She got the traffic light coded to Braille so Blind people could cross the streets by sound. I remember her ranting and raving to the authorities. Her rage was beautiful.
PanthersKissOPMiddlesex County, Massachusetts USA967 posts
All your words on this thread are beautiful, thank you for sharing so much, very few people want to touch the subject, I think everybody, disabilities or not should be informed.
panther?......i own 3 domain (.com, .net, .org i can't give my web address to any, i respect CS)names and with the help of these folks we can get a support group with resources for single parents.
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Well, I started expressing my views on how every article is aimed at two parent families, with two incomes, stablity, but have a child with disabilities...which I can connect to those emotions, but not the two parents, two incomes.
So I told the survey people, that I wanted to see an article that represented the realities of single parents with just one income, the other parent not involved and the emotional and finacial impact that has on the single parent, and family.
Without many resources available, like support groups aimed at children that suffer multiple medical conditions.
And when their condition is so rare, that there is no one else to relate to, no one that understands the emotional/psycholoical isolation that can set in for both parent,and child.
I then went on to explain how I have to fight for every right my daughter is entitle too, like special education, with the emphasis, that on top of that she will need other resources due to her "different special needs".
I fight the school system, fought SSI for three yrs...I do everything.
Ok...so I am yapping away like now...lets get to the point here.
The survey people were so impressed by my statements, that the magazine is writing an article on what I expressed and also invited me to reach out to the readers with my support.
I never meant to make such an impact, I am just used to being outspoken, also I advocate on behalf of those that do not have the courage to do things on their own.
Ok so late last night I find an e-mail from the editorial manager, and she thank me for all I had brought to their attention, and told me how the article will be done.
I am not bragging, just thought I shared that sometimes we do make a little difference by standing by our belief and not being afraid of speaking out.
I hope I did not bored you.
............ Angel.............