Good piece from the UK on practical steps to make social settings more agreeable to people with autism.
It was a chance to remind these care giving allies how much they mean to families like ours.
Tim shared a story from our book, recounting how we threw a little party to offer a personal goodbye to one of our son’s music therapists before we moved to another state. He noted that educators, medical providers, therapists and all kinds of other direct support folks don’t hear from families unless and until something is wrong. Our interactions tend to be steeped in bad news. We need to find ways to say thank you and, as the New Testament puts it, encourage one another and build one another up (1 Thessalonians 5:11).
As we shared in an earlier post, community support agencies have the heart and vision to provide all kinds of help to people with special needs and their families, but are hindered by lack of staff. When Tim asked his audience what things families, churches, community groups and other neighbors could do to enhance their work, responses included
- Identify people suited to care giving and encourage them to consider it as a career
- Help the public understand the work of service providers and why they do it
- Provide meaningful interactions and opportunities in the community for the people receiving services
- Express gratitude to caregivers
- Engage in advocacy work on behalf of community support agencies
One of the people present spoke of care giving as possessing the dignity of risk. Caring for people with special needs means going down unfamiliar paths, trying out the untested, sometimes trusting intuition in opposition to common sense, and learning to center efforts on the person in our care instead of our own expectations of “what’s best.”
Families have this risk, dignity and all, dropped upon us when our loved one is diagnosed. We accept the risk out of love and duty.
We are blessed when folks who don’t have to accept it choose the dignity of risk as a way of life. May their tribe increase.
The harvest is plentiful, but the laborers are few. Therefore pray earnestly to the Lord of the harvest to send out laborers into his harvest. (Luke 10:2)
Melissa is reclaiming a room of the house to turn into a man cave for Tim. Well, more of a study really since Tim lost his man card ages ago.
Anyway, this is an empty nest dividend, a chance to use space that was ignored or allowed to be thrashed during the long years of care giving. To friggin’ enjoy parts of our house in non-care-giving ways.
Today we cleared out two broken down file cabinets. They will be hauled away but oh what they held.
Well, frankly, most of it was trash. Sure, important trash that will need to be shredded. But stuff no longer needed.
Years of mortgage and refi paperwork from trying to strike deals to make ends meet without upending our son’s life.
All kinds of medical insurance stuff as the pursuit of more income, better coverage or simply more time to meet care giving demands worked itself out in an array of job changes and second jobs.
And of course tons of educational and social service type stuff that life with autism generates. IEP “invitations” and outcomes that seemed like the be-all-and-end-all of life at the time. Report cards. Respite care accounting forms. Our son’s participation in a University of California search for autism causes in the environment (no, they didn’t find one). All of those pull-off-the-ends-and-lift-the-sticky Social Security Administration forms.
There were a few important things to retain, but by and large the paper trail of our care giving life is heading to the garage in reinforced bags to be handed over to a shredding service.
Then there were some sentimental rescues. Pictures of Joey, class photos from various schools, notes from teachers and others who helped Joey and our whole family over the years.
Those we boxed for various destinations – some for a shinier new file cabinet to come, of course – but others for a scrapbook for Joey. He delights in looking at pictures of past friends, teachers, neighbors and classmates. Will be a joy to bring a collection to grace his new home.
And you can bet that some paper will just live here with us, in wallets and purses, in drawers where we can bump into a memory in the course of daily routines, maybe in albums for us.
I mean, who else will reminisce and smile and maybe shed a sweet tear over a picture of Joey turning his back on the camera… and on Santa?
I know, I know, you try to chill with some time surfing the internet and you are bombarded with the 5 Things You Must Do and the 10 Things You Should Never Do and the 3 Things You Absolutely Must Stop Doing.
So many experts available to overhaul and repair our lives.
Bumped into a list this morning, but it’s good. It’s not loaded with absolute, must, always, never or any of that arrogance. Just four good ideas, especially if you’re not a caregiver but care about someone who is.
This one most resonated with me:
Time is the greatest gift. Many caregivers have told me that caregiving locks them into whirlwind daily routines of attending to others’ needs. Above all else, they miss time for themselves — to go to the salon or bank, read a book, clean the house or catch up on sleep. The greatest comfort you may offer is the gift of time. Offer to sit with care receivers while caregivers take a break. Pick up supplies for caregivers so they can stay home and relax. Try to make yourself available to listen as often as they need to vent.
Things you might consider small favors are solid gold to a caregiver. YOU just being around can be a gift. Even in the midst of a tornado of chores, an adult friend with whom to joke, whine, opinionate or otherwise have a peer level, non-care-giving interaction is a blessing.
Go check out the list of four suggestions. You’ll find you have a lot to give by just being you. And in caring for us caregivers, you are improving our peace, strength and focus to help those in our care.
Much of our region is shut in by a massive blizzard today. The City of Sioux Falls is asking people to stay off of city streets, let alone risk country roads or the Interstates.
Now that we are empty nest, I find myself remembering the anxiety that would have accompanied this kind of day when we had our son at home. Everything would be wrong and a potential meltdown: if the weather cancelled an anticipated outing; if it prevented fulfillment of a whim for some particular food that wasn’t in the house; if any daily routines were in disarray.
Boredom would make him edgy and mounting stress could issue in a seizure. But he wouldn’t engage in activities we tried to share. He’d generally vocalize some demand that was impossible to meet and his tension would escalate.
Today he’ll be in his group home. He has his own room with a computer and movies in case he wants to be alone. There are common spaces with things to do if he wants company. And there are staff there with the residents doing what we used to do, and we are grateful.
Stressful days are not limited to snow days when it comes to autism and care giving. School vacation or “in service” days, when routine is removed, can be walks through hell.
My respect goes out to all who are shut in today, be they people with special needs or their caregivers. Whatever inconveniences and challenges most of us endure, they have an extra helping or two.
There are so many good voices and resources out there to give greater insight into the lives of people with autism. More and more, they are able to step up and represent.
If you know a family caring for a person with autism, chronic illness or other special needs, we hope our little book might be one useful voice you hear.
If you buy a copy and want it signed, let us know via the email button at our Facebook Page. We’ll give you mailing instructions and work out a plan to get the signed book back to you or to someone you want to have it.
Thank you for reading here. Most of all thanks for caring about autism, caregivers and the world around you. Many blessings to you.
I need help, please was a bit of expressive language that some good teacher or therapist helped our son with autism to use years ago.
For a person like our son, navigating an array of impairments like fine motor and personal care skills, the request is vital for opening a bottle of juice or getting to the bathroom on time. (Of course he also learned to use it to enlist mom and dad for remedial action; I need help, please could signal a wardrobe change or a bathroom cleanup.)
It’s a sweet phrase in our family life. It’s entered that volume of cute things the kids used to say, so my wife and I might raise our voice to a childlike tenor and say it if we can’t find some item around the house.
But it came to mind in a more serious context this week when I asked a clergy friend about his Easter service at a residential care facility.
He shrugged and said, Well, there aren’t that many there to attend because they don’t have enough staff to house the population they used to.
I need help, please.
People with special needs need family caregivers.
Family caregivers need professional allies in public and private agencies.
Public and private agencies need good human and financial resources to support individual and family needs.
The need for help is broad, but energy, money, time, staff, space, love and other resources can be in short supply; either hard to find or quickly exhausted and slow to replenish.
It’s a tough and perennial problem, even for the ultimate caregiver,
And Jesus said to them, “The harvest is plentiful, but the laborers are few. Therefore pray earnestly to the Lord of the harvest to send out laborers into his harvest.” (Luke 10:2)
The days after parents hear their child has a disability or special need can be difficult days… Most parents go through a mourning process. The expectations and dreams they may have had for their child die and new ones must take root. (Sandra Peoples)
Easter is about an empty tomb. The expectation that “It’s all over, all is lost” gives way to new life so amazing that, at first, it’s beyond words,
And they went out and fled from the tomb, for trembling and astonishment had seized them, and they said nothing to anyone, for they were afraid. (Mark 16:8)
May the surprise of Easter give you new hope – new LIFE – in place of whatever you’ve had to give up. Don’t worry if you can’t hang words on it right away. Just live it and the One who gives it will help you understand.