kids

[kate]

There must be some of you out there with kids. Ours are 11 and 13, and their dad broke his neck about 11 months ago. Our family was close and active, and one of my struggles has been how to keep this mess from completely destroying their sense of security. What I've tried to help them see is that safety isn't knowing nothing terrible will ever happen--it's knowing that you'll be up to dealing with it when it does. But I'm only one voice, and there have been some mighty scary moments in these last months. So, I'd like to know what resources are out there to help kids through? What literature, what support groups? How have your kids fared

[cheesecake]

Kate,
There was a discussion earlier this week with Sharron, a new injury SCI mom. The post was titled, Hello & something. I can't locate it. I think it is under life forum.

My SCI was pre-kids and I am an incomplete and ambulatory. Eight months ago I had an injury (assault) that shook my kids and their security up. I have lost use of my dominate arm. One thing we put in place to minimize the "trauma" was to keep family taditions. We modified them some but as easy as it would be to skip them we hold tight. This has helped the sense of security quite a bit.

The National Spinal Cord Injury Association at www.spinalcord.org (http://www.spinalcord.org) used to have a pen pal program for kids with SCI called In Touch With Kids. Their book "Tell It Like It Is" is for pre-teens and teens that have SCI The book was written by the kids but I think it is a wonderful learning tool for kids with SCI parents. If you can't get the book from NSCIA contact www.pva.org (http://www.pva.org) as PVA provided the grant monies for the writing of the books. They had also been expanding it to kids whose folks have an SCI. Our kids have gone to a suppport group at our local hospital. It is for kids who are dealing with grieving, etc. Check out your local hospital.

[This message was edited by cheesecake on February 06, 2002 at 11:30 PM.]

[marco25]

Our children are 9 (boy) and almost 13 (girl). Their father's injury is 25 years old, so they've always lived with it. However, they're entering a difficult age, very aware of what others think of them and their parents. Kids this age with an SCI parent are especially vulnerable.

This is what we've learned. First we've tried to make life at home stable, secure, fun, loving. (But that doesn't mean we don't have our "moments" either!) We want them growing up feeling like home is THE place for acceptance, love, fun, security--not the backseat or (you fill in the blank). Second, Scott and I do our best to present a united front, showing love and respect to each other, even when we want to kill each other! And sometimes the "act" makes making up much easier. Third, and I give all the credit to my husband, his attitude about himself really affects the children's attitude toward him. He's upbeat, confident, out-going, hard-working, demanding excellence of himself and others. Fourth, we've allowed the children to discuss their feelings about having a father who can't do what a lot of other fathers do. We affirm their feelings and then share from our own hearts why we feel differently, if that's needed.

In many ways our children (and yours) are fortunate because they're seeing firsthand all the struggles and triumphs disabled people go through. I certainly didn't have that insight as a child, and frankly didn't have much use for the "disabled." But my son especially has developed such a concern and love for anyone hurting, disabled, even the elderly. Sometimes it makes my heart well up with pride and joy to the point of tears when I see him gently loving a forgotten old person in the nursing home.

All that said, I'm certainly no expert on the subject, but it's one very important to me. I'm glad you wrote about it. Let's keep in touch.

[spinner's wife]

We have 2 children ages 8 and 9. My husband is a T-4 para...we have been married a;most 2 years. He is not my kids "bio-Dad", but he certainately is their father!!! It is differebt for them to have a father in a wheelchair. They will never see him walk. They sometimes say they wish he could, and that they wish he wasnt in a wheelchair and we always sympathize with them and say we wish that too.We all seem to be adjusting to our roles in our new family and I believe that having a father who is paralyzed will make my kids more tolerate of other disabled people and will make them more patient and tolerant of others. At least that is my prayer for them. I know being married to my husband has changed me and my outlook on life, for the better

[BirdeR]

http://trfn.clpgh.org/star/index.shtml

The Parents with Disabilities Program provides information, referral and advocacy services for:


People with disabilities who are considering pregnancy or adoption.

Parents with disabilities with children of all ages.

Family and friends of parents with disabilities.

Community organizations, social service agencies, and health care providers wishing to ensure that their services are responsive, welcoming, and inclusive of parents with disabilities.

Professionals, students, and the general public seeking information on parenting with a disability.


Their services include:


A reference and resource library.

Adaptive Parenting Equipment Program.

Formal and informal sharing of parenting experiences through project staff, advisory council members, and peer support.

Education and training programs for health care providers and community organizations.

Links to other organizations serving parents with disabilities.


~~~~~~~~~ALSO TRY~~~~~~~~~~~~~~~~~~~~~

http://www.lookingglass.org/ppn.php

"Through the Looking Glass Parent-to-Parent Network"

The purpose of the National Parent-to-Parent Network at Through the Looking Glass is to connect parents, as well as those who are considering becoming parents, with others who may have shared similar experiences or faced common barriers as parents with disabilities.

~~~~~~~~~~~~ALSO TRY~~~~~~~~~~~~~~~~~~

http://www.disabledparents.net/
Parents with Disabilities Online.
(THIS ONE IS GREAT!!!!!!!!!)

http://www.disabledparentsnetwork.org.uk/
Disabled Parents Network
Disabled people & parenthood: A national network helping one another and bringing about change


Hope some of this helps........


http://sci.rutgers.edu/forum/images/smilies/smile.gif

[This message was edited by BirdeR on Mar 05, 2002 at 01:21 PM.]

[kate]

I wanted to say thanks for your replies, and tell you about how our family spent the first anniversary of my husband's accident, which was two days ago. I'd been trying to figure out a way to have us all be together that would be both fun and meaningful . . . finally had the brilliant beyond brilliant idea to rent a limousine. Which is what we did--a long black caddy with the plushest leather seats you ever saw, a sunroof that opened, a television and wet bar, and a uniformed driver.

He took us all around the city--first stop the hospital where we spent so many terrifying hours a year ago. We all went in and delivered thank-you notes to the nurses and therapists, then on to meet up with others who were involved in helping us get through those first hard months.

The girls were thrilled to be in that car, and it was impossible not to feel glad to be alive and together. We ended it with dinner in a fancy restaurant at the top of a 30-story hotel downtown. There was a snowstorm moving in across Puget Sound, rare for us, and by the time we were delivered back to our driveway, everything was white like Christmas.

It was a great day, and you are the only people in the world who can appreciate how bittersweet and intense it felt. "It's like we're rich," our thirteen-year-old said. And so we are.

[marmalady]

Sounds like it was a beautiful day, Kate, and one to be cherished. If the love that shines through your posts continues, I know you and your family will get through whatever life has to offer. Lots of love and luck to you and yours!

_____________
Tough times don't last - tough people do.

[rasperrypie]

mom, i just wanna say that just you being there, here now, makes it easier to deal with and i'm glad we have been able to stay together these past months.