Sometimes I feel like I can't find the courage I need. Most recently it's happened when my son, who has severe disabilities, left the school system at age 21.
At a time when most parenting 'gigs' are winding down, it feels like mine is ramping up, as I try to help him carve out a meaningful life. My son's disabilities, particularly his lack of speech and behaviour issues, make it hard for him to fit into a typical employment or school setting. We didn't get the funding we'd hoped for from the government, or the planning support we've been on the wait list for. And I didn't save for this time. As he grew up, I always felt we had to spare no expense in therapies and activities and products and camps that might promote his development as well as make him happy.
So we need to get creative ourselves. We'll be working with someone to help us develop a support network to bring people to the table who can help us figure out what a good life for our son would be, from activities or employment or volunteer work to friends.
It's not easy asking for help, as all parents of kids with disabilities understand. So I thought I would start this column called The courage project. Maybe we can encourage all of our readers to share situations where they feel lacking in courage. Perhaps I can tell our story as we go alone, and others can share their stories, and we can support each other.
The medals above are some of my Dad's, from WWII. He lay communication lines between the frontlines and headquarters through all of the major battles, and landed with the allies in Normandy on D Day plus 1. He was 19 at the start of the war and served for over six years.
I think I'm going to take one of his medals and put it on a chain and wear it.
Let me know if you'd like to share a story about parenting that calls for courage, particularly if you are struggling to find it.
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7 comments:
My mother gave up on disability long before I was ever discharged from what is presently today Holland Bloorview. Raising my brother and I, who have CP, took it's tool far earlier then I ever could have imagined. If you were to ask my mother about my current medical condition, or of the challenges I face, she simply doesn't know.
However, you and I, Louise, are of a different make. For, in adulthood, I have beaten, bloodied and on my knees, but never broken. You will help Ben find his way, as you did for me through BLOOM --I bet my life on it!
As for courage, I'm going to order WordQ 4, on Monday, and start writing."
love
matt
I do like the concept of a courage project, though a sub-category in my life would have to be the problem of
depletion and exhaustion.
I, too, like the idea of a courage project. I find my own courage is often just a facade for "scared as sh*@." My daughter is 20 years old and has only two more years left in the school system. I have little to no idea what I'll do after that.
Louise, I so identify with what you have written here! Even the details are nearly identical, just that our child is a daughter and she does have a brief time left with her transition program. I'd better act quickly!
I appreciate so much your focus on the positive, courage. We're all stepping outside our comfort zones here. Creativity goes hand in hand with that as we stretch ourselves to come up with innovative ways to help our young adults fill their days with meaning...all on a non-existent budget.
I frittered away my daughter's high school years trying to "get things done" rather than networking with other local parents. Big mistake! Now I find myself out of that networking time and not knowing many special needs parents in our town. What is available for our kids is going to be what WE parents make it, as funded programs are only available in our state for the employable (how's that for irony?). My husband and I dream of organizing a parent-run small group for young adults that provides social time, enriching outings, some learning, some fun... We have shared our concerns with our local Specialize Rec program and they are beginning to get involved. I do so appreciate this! Still, we parents need to be very active so that we don't lose progress when program staff turns over, as it does.
Matt, I didn't want this to get lost in my earlier comment, but this is for you.
I applaud you for stepping out in courage with your writing. Your comments on Bloom have been insightful and inspiring; your perspective is tremendously helpful to parents whose kids can't express what you can. I hope the WordQ program will make it easier for your to get your words in print so you can share more with a larger audience. You have important things to say.
This is a huge lacking in a lot of programs working with kids with disabilities. Focusing on the now when it's the future that's the issue. Same with parents. I think it's on purpose to juice the funds that are there for kids, knowing full well that they dry up once the kid is considered an adult. Happens with regular kids too.
There are programs and homes for those disabled here in the US, but most require payment from the parents as well as what the government gives. Nursing homes are where most end up, some in day programs that are locally subsidized. When Medicare kicks in, they go full time into nursing homes. The quality varies and most of those in there are elderly.
Dear Rose-Marie,
Your words and unwavering support will always be a part of me, as they remain close to my heart from this moment forth. I squandered much of youth, wanting nothing to do with disability, and now the only thing I want to do is, "Fight for those who can't fight for themselves."
The issues pertaining to those with disabilities, and their families, are the same or equal to that of the average person:
1) Food
2) Shelter
3) Medicine
4) Education
5) Employment (community involvement)
Some argue that providing care for adults with special needs is far too costly, but we can achieve this by modest means, and create a much richer state.
What does the good book say? "Let any man judge me."
love
matt
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