What about our other family members? Family matters. (autistic, mentally, child) - Special Needs Children - - City-Data Forum

midwestmom · 12-30-2010, 08:18 PM

I know a lot of us are looking for answers on all the issues involving our Special needs children. From where to find programs, if/where we should move - a lot of our lives is filled with concerns about them no matter what age they are because they're vulnerable mentally or medically, maybe for their entire lifetime.

I don't know about you, but at Special Olympics or other places I notice how some sibs and families are very encouraging "cheerleaders" - and I think most of them are, still we're all human and other sibs get jealous or resentful of the extra time/patience/care that "special" family members need. Sometimes, I ponder how much of our lives and our other kids lives are changed. Our working life, recreation, where we live maybe. I know I'm going to have very little retirement for instance because I haven't always been able to work FT with benefits.

Can be positive and it seems to me that we're so much supposed to be positive about our special kids accomplishments (which of course we are) that its not pc for our families to be negative at all. Not be so bothered by tantrums running on for hours, or bugged by cleaning another "accident" of a middle-schooler or the same question repeated 50 times. I kind of get it that if you start letting it get to you too much, it would be too overwhelming and that isn't good for our outlook either. We need to keep things in perspective, sense of humor helpful.

I guess I wish we (in general) were more comfortable just flat out complaining/whining once in awhile without feeling guilty that we're not always counting our blessings (things could be much worse..etc). I notice a big difference between families with special kids and those without -those without being free-er to express their everyday frustrations and with less judgement about it from other people. Maybe its our need to show the world we're AOK with all the extra challenges. I think we mostly are really, its the way our lives are and its not that we wistfully pine for a "normal" life. I just wish we could react "normally" to the downside as well as the upside.

And I'm curious how you all manage your everyday lives..for those with adult children...how do you manage planning for retirement if you can't work FT because you need to be home? Do you have older kids/spouse work opposite work schedules to be there? Did you try harder to work from home or start your own home business? How are your other kids doing?

This stuff is recently on my mind because our adult disabled dd has a chance to get into a good day program. It's wonderful news. On the flip side, her older sib (who's given up a lot so we can all manage) doesn't like it here, hasn't been able to find work and wants to move. To a place that won't have awesome things like day programs but does offer a good future and more job possibilities for older sib. And my job is drastically cutting my hours. Financially we pretty much have to stay together to do ok. So I have to decide what to do and I'm noticing that its come up a lot over the years.
How many changes should the rest of the family make (or not make) because of our disabled child? And how to decide what will be best for all of us (without the crystal ball to help

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nana053 · 12-30-2010, 08:52 PM

This issue *is* being addressed, but it is difficult. This woman calls herself a *glass child* because she says people looked through her due to her two special needs brothers.

TEDx San Antonio and Glass Children

Here's info from the sibshops group that is attempting to help siblings.

What Siblings of Children With Special Needs Would Like Parents and Service Providers to Know

AnywhereElse · 01-06-2011, 12:24 PM

We have an adult son with DS who is 24 years old. We just pulled him out of the day program because of neglect and have since found out, well, it is much worse than we could have thought. Our son qualified for supportive home care and in KS and if you look at the nearby thread, many other states, and I am allowed to do the care. Yes, we too face a lean retirement because I was never able to get back to work full-time or even part-time in several years. In the beginning when our older son was at home, we managed with me working days, brother filling in in the middle and my husband working nights. We could not find a day care center that would accept our son despite his good health. Our older son has done great but there was an age gap of 9 1/2 years between the two children so the older one understood and both boys had their needs met. They were like two only children in a way. I guess I don't generally complain about the down side of raising my son with DS because I have known that so many chose abortion who carry babies with DS and caring for him isn't bad enough to justify........... It has been really, really hard and financially, mentally and physically draining. We must find a good program for our son so that he will have a life of his own and that is the priority at this point and those programs are few and far between. I see our son's purpose in life, understand why he came to be with us, am glad we were and are here for him. Beware of burnout though as I have seen that and have not experienced it but it is a situation that is bad for everyone involved.

nana053 · 01-06-2011, 03:38 PM

There are several things that as parents we need to be aware of when we have special needs and NT children.

Here's an excellent presentation by the adult sibling of two autistic boys. Her childhood was rough for several reasons, but one thing she says is that because she was *expected* to be the good child and because people looked through her, she wanted to kill herself at one point.

http://www.ted.com/talks/adora_svitak.html

The other thing that parents need is a support network that allows them to vent their frustrations. Many women find this in online forums like the private autism board that I frequent. It is harder, I think, for men to find this kind of support.

nana053 · 01-06-2011, 03:40 PM

Oh, and to the OP, you need to allow your older child to move away from home and have a life of his or her own even if that means more sacrifice. If your younger one gets into a day program or group home, this may be easier to manage.

midwestmom · 01-08-2011, 11:02 PM

Nana053
Thanks for the link, it was interesting to hear that lecture. What a difficult childhood..though I think her message was refreshing to hear. Although my upbringing wasn't as traumatic, as a "glass" sib myself I could relate to some of the ideas as well as seeing similar traits in my NT child.
I really urge you all to read the second link about sibshops and What Siblings...There are othe links under sibshops with info about adult siblings and issues to consider as parents of disabled and NT kids.
I'm going to get this one book with essays written by those sibs. I really wish sibshops had been around when I was younger, or even for my own children - hope that since it is available now that some of you will consider checking into it.

midwestmom · 01-08-2011, 11:15 PM

nana053,
Appreciate your opinion on our decision, its a difficult one and I'm trying to take everyone into consideration. It's a little less complicated in that my oldest doesn't want to move out on their own...at least not yet. Would even rather stay here with us even though it isn't (in my opinion) the best location for her to be at this point. Since it would be cheaper there, I wouldn't have to depend on her as much or she on us.