Historically, it is very likely that people with autism served in our Armed Forces. For one thing, autism is a recent diagnosis and many generations of autistic Americans would have been seen as little more than “a bit different.”
Here rests in honored glory an American soldierknown but to God
For families with autism, this Memorial Day might be more of a blur, as so many have been locked in at home and locked out of schools and other programs for months. A holiday is like any other day under Covid-19 measures.
Yet we should pause and be grateful for the sacrifices of those who’ve gone before, which surely included people like those in our care. And we should realize that those in our care might be tomorrow’s heroes. There’s a lot we just can’t know, so we soldier on in our various ways.
I could be glib and suggest that any effort to communicate across special needs is a form of distance learning.
But Special Education presents challenges in the best of times, and even more with the school closures due to Covid-19.
Our local news aired a good feature on this. It gets beyond lamenting the hardship to show some of the creative efforts to keep Special Ed going over distance. The needed collaboration of family and school comes into focus, and maybe that’s one of the silver linings of our Covid-19 cloud. As one Sioux Falls teacher explains,
For my students who are more significantly impacted and have those significant disabilities, a lot of the time the parents are the ones working one on one with their child doing the things that I have assigned, but they’re really the ones that are really providing those interventions, through my specialized instruction that I’m providing them and the tools that I’m giving them.
It’s all individualized based on what the family needs, for what is working for their family, and where families are at. So if families are feeling overwhelmed and their focusing on the mental and physical health of their family, then that’s what I’m stressing, first and foremost, before anything academic.
I think it safe to say that family caregivers are always essential personnel, albeit unpaid and unable to be laid off even if we wanted a furlough (which some days sounds super attractive).
The news segment reports the painful reality that sometimes the family caregiver is the only one on the job. As one disability rights advocate relates,
We’ve represented a couple families who have had issues with schools not providing services, not providing the related services like speech and physical therapy and occupational therapy, and so we’ve worked with the parent and the school to create a dialogue and support the parent, so that the school understood their responsibilities to provide services.
I’ve shared here that we are empty nest, with the school days behind us. But hearing reports like this one lights up the old feelings, and our hearts go out to families still on that leg of the care giving journey.
Keep at it. Even with the gaps and failures, personal or public, you’re the best resource to those in your care.
As you might guess, many families are dealing with special needs kids at home since schools and other community programs are closed. They fall in the too much bunch. For the caregivers, there’s no respite. Now they are having to go all in as teachers and therapists on top of all the other roles caregiving demands.
And for many kids with special needs – autism in particular – the disruption of daily routines and relationships is hell.
So you’ve got disoriented kids seeking to reorder their connections to the world and overtaxed caregivers trying, in the best case, to help that happen – but also tempted by the rush of demands to impose an order that just exasperates and exhausts kids and caregivers alike.
Our family is in the too little bunch. Our son is safe and well cared for in his group home, but that’s where he stays 24/7 as all off site programs shut down when the schools closed.
And we can’t take him out for a visit – if we do, he has to stay here indefinitely. And having lived that life for a few decades, we aren’t up to jumping back into the too much bunch.
We’ve tried to generate some family connection by making Friday night meals to deliver to the residents and staff of the group home. We sent along the smiley picture and greeting poster below. Joey came down to the door when dropped it all off the first night, so we got to wave and say some hellos.
Since then, he’s decided not to come to the door, preferring to do whatever he does in the run up to dinner. The second night we dropped off a meal, our call of, Joey, come to the door was answered with a big ol’ NOOO from his inner sanctum.
Yep, that was too little for us but it gave us a laugh as that’s Joey’s personality. It doesn’t mean a lack of affection, just means that he’s comfy where he is and we’ll get back to weekly visits at our house when this virus stuff is lifted.
Just brainstorming here, but what are some things we can do to help out our too much and too little care giving neighbors?
For those who are in the too much bunch, locked down all together, providing respite isn’t an option since it will violate social distancing. But that doesn’t mean you can’t call, text, video chat, drop greeting cards or send other signs of affection.
Also, with many markets restricting shoppers to one person per cart, families with special needs kids are more restricted than most when it comes to grocery runs. Maybe you can pick up and drop off supplies – sure, it’s nice if you can gift the stuff, but even if the family is game to pay you will be doing a big service by shopping and delivering.
If you have some good educational, social or therapy activities that have worked with special needs kids, pass those along to families who are navigating too much territory. Your experiences can make their extended time together more enjoyable and productive.
For the too little league, find out if there are things you can do to support the residents and staff who can’t venture out or welcome visitors. Food is always fun – we are enjoying the weekly dinner prep and delivery to Joey’s group home. A local pizza place has been delivering meals to the staff at local clinics and care agencies. Partner with friends, neighbors, churches, local businesses, etc. and come up with fun ways to send some love and practical relief where folks have too little contact with loved ones outside.
More thoughts, ideas or just plain venting and pleading? All are welcome in the comments here or at our Facebook Page.
I’m coming off a very sweet weekend in which Melissa and I marked 29 years of marriage (the large part of it as caregivers) and many kind people graced my retirement from church leadership.
It is one of those forks in the road where I guess I’m supposed to type memoir-like thoughts. But I’m not. The fork is not confusing and I don’t need to linger; I know where I’m heading next, at least in the short term.
I’ll be working at a local hospital in a specific kind of work, sterilizing medical implements. It won’t be the kind of people-work that rides on one’s back all the way home and then sprawls all over one’s family and personal life.
I’m glad for it. I applied for some other, more lucrative public service positions, but those didn’t come through – and in short hindsight I think that’s a blessing. I couldn’t have given the emotional quality of work they needed.
The decades of family care giving simultaneous with the emotional demands of church leadership took a toll. There were various highs and lows, but I’m not going back over them with a lot of “woulda shoulda coulda” self-absorption. They were what they were. I lifted a lot of people up and I let a lot of people down. Such is human life.
Looking at myself honestly in the here and now, I can say that I have a good number of emotional punctures. Not enough to incapacitate me or require major repair, but enough to know I need to keep things as simple as I can. I’m like a garden hose with some nicks – sure, it’s not perfect, but it’s not time to throw it away. It gets most of the water where it needs to flow. A spot of duct tape and all’s well.
Care giving takes a toll. I say that without shame. It’s diminished me in some ways.
And I know it’s improved and enriched me as well.
If you are a caregiver in the trenches, you’re not crazy and, most of all, not a bad person (more than any other ) when you feel your nicks and leaks. Care giving is costly. As is anything ultimately worthwhile,
…through many tribulations we must enter the kingdom of God. (Acts 14:22)
Greet Rufus, chosen in the Lord; also his mother, who has been a mother to me as well. (Romans 16:13)
Mother’s Day is here – let’s show some love for all the moms! I want to honor Melissa, not only for giving birth to our two sons, but for the long term momming that went into raising a son with special needs to adulthood. (re: the picture – no, he doesn’t drink. It was just a milestone to celebrate his 21st birthday in a place that required him to reach 21. Strictly a burger run).
I know from years of church experience that piling on the Mother’s Day sentiment can have unintended consequences. Women who are not birth moms, or who can’t be, or who lost a child, or who are estranged from their kids might perceive a “second class female” label being slapped on them when church services set aside the Gospel and function more like a Hallmark holiday.
I don’t think that means we should eliminate Mothers Day but we should be aware of its limits. Giving birth is not the only value to a woman’s existence and, frankly, there’s more to being a mom than giving birth and having a baby shower. We need to watch out for romanticizing and minimizing what should be serious, sacrificial and lifelong effort. (Motherhood in this fullest sense is quite Christ-like).
The full expression of motherhood involves care giving. I’ve watched Melissa’s role continually evolve as our boys age. She’s always their care giver, even as they grow in adult independence. She continues to be a source of “home” for them, even across distance.
I quoted Saint Paul at the top of these thoughts. In an easy-to-skip ending to one of his letters, where he’s writing a lot of “Say ‘Hi’ to so-and-so” pleasantries, he mentions a fellow Christian named Rufus and then asks his readers to greet Rufus’ unnamed mother, who, Paul writes, has been a mother to me as well.
What form this took we don’t know. We know that Paul’s ministry kept him on the road; perhaps Rufus’ mom gave the Apostle a sense of home base and family when he visited Rome. Paul mentions ailments in some of his letters; perhaps Rufus’ mom gave him respite and comfort. And Paul’s life was full of hardships and hostile confrontations; perhaps the mothering he received from this unnamed woman was in simple hospitality, human warmth and affirming words when they crossed paths. In a world that beat Paul physically and emotionally, this lady’s glad hug and smiling “Welcome back, stranger!” would have been the medicine of motherly love (I remember the days when our kids seemed to get better from bugs by just sitting on Melissa’s lap for a bit.)
In her book Teaching Diamonds in the Tough, Cleo Lampos includes a chapter entitled To The Other Mother. She lauds those who step in to give care in ways that make them mothers to the world’s needy children of all ages,
In our family, my Aunt Lois served as our unofficial foster care system. At one time or another, Aunt Lois took care of most of my cousins for varying lengths of time and for differing reasons. Her frame house in mid-Iowa became a refuge for my sister and me for over a year as my mother battled with an alcoholic husband in another state. Aunt Lois provided stability and protection at a time when my sister and I displayed emotional signs from abuse. She infused us with hope because we had lost ours. Aunt Lois became “our other mother.”
To women like… Aunt Lois, a lot of adults owe debts of gratitude that can never be paid. The “other mother” saved our lives.
So I take this Mother’s Day on the calendar to give thanks for all of the mothers on the job out there; those like Melissa who gave birth and continue to nurture those lives decades later, and to all the “other mothers” who give care and bring forth new life when others have the blues…
As a speaker of English, Italian, French and Russian, the fact that my daughter did not have speech was a constant source of despair…Yes, I still find myself hoping that one day my daughter will speak to me and tell me all about what it’s like be autistic, but for now, I can wait.
The mom makes use of her local newspaper to share insight into autism and the needs of family caregivers. Being a voice for those in our care and for caregivers can spread not only awareness but opportunities for support and compassion:
Without a support group, I had no guidance on how to deal with issues created by my daughter’s condition in public, so I did the best I could to be honest and take responsibility.
When a stranger would scold my daughter or shout at her for behaving inappropriately in public, I would say, “I’m sorry. My daughter has autism. We meant no offense.”
I didn’t know how people would react, and I was surprised by the response I got. Often the person would say, “I’m sorry. I didn’t know.”
But sometimes they would say, “I have three grandchildren with autism,” or “My niece and nephew have autism,”or “My best friend’s son has severe ADHA and is on the spectrum.”
On at least one occasion, a complete stranger came up to me afterwards,, and told me about a member of their family with a disability.
There are a lot of us out there, and if you follow the news on autism, there are more of us every day.
Often we would take a few minutes to talk about the difficulties involved with rearing a child with a disability and the stress, not just about behavior, but also of not knowing where they will be developmentally in 10 years, or 20 years, or after you’re gone.
I learned that I wasn’t alone.
Recently, a group of us in Yankton formed our own “Mothers of Disabled Children” support group. It’s small, and we’ve only met a couple of times, but I already look forward to hearing about what’s going on with the other moms and their kids — without judgement.
It is a great example of communication with the community, both in the happenstance encounters she describes and in the intentional formation of groups and use of local information sources.
Here in South Dakota, the weather extremes must be navigated. If you plant before spring locks in, a frost can occur, and the annuals are history. In the midst of a broiling summer, a thunderstorm can sweep in and dump inches of water. You have mud puddles where your planting once shined. The blazing sun in the bright blue sky, like the pattern for our state flag, fries fragile flowers. The result is that we’re on hiatus from planting flowers here.
Joey’s autism does yeoman work of blowing up my fantasy of predictable order. Just when something seems to work, it breaks down. For example, Joey loved the water. One of my first memories of him appearing “normal” in public was at a beach where he ran out to the water and let the waves chase him back, all the while laughing just like the other little kids. But it wasn’t just the ocean. Any water made caring for Joey easier. Then he stopped liking water.
Give it a read. Hope it is helpful if you’re in the midst of a “things are getting away from me” mood. They are, of course, getting away from you. But you’re OK. No, not FEELING OK. You’re OK because you are, against all the evidence, the very best resource that the universe sends to those in your care.
Joey has taught us a lot about saying goodbye to things we valued and enjoyed. We had a set of stoneware mugs from the bed-and-breakfast where we honeymooned. He threw one and shattered it. We kept a little mesh bag of Jordan almonds from a place setting at our wedding reception. He ate them.
The smiley kid by the Christmas tree? You mean that happy child?
As I went on to write in the same chapter of the book,
Taking care of one off-the-wall, scary child of God means that a bunch of our nice stuff will get trashed. We can go down with our things and drown in a lake of resentment. Or we can find the love in our hearts that makes the well-being of that one person worth all the losses. More than this, if we open our eyes of faith, we can see God’s love for us.
Prayers that your holiday – holy day – catches even a bit of the holy. A little goes a long way. Little town of Bethlehem, a baby in a manger, from what seems small comes divine blessing.
Little you in your little part of the universe – you are a blessing to those in your care.
Man, ultimate? Waterproof? In&Outdoor? Wish I was this bada**
“Family caregivers provide the vast majority of care that happens in-between appointments with physicians or in-between hospital stays or different interactions with the health-care system,” said Christa Haanstra of the Change Foundation, an independent health policy think-tank dedicated to enhancing patient and caregiver experiences.
“There’s a lot more health care happening in the home, provided in large part by family caregivers,” said Haanstra, noting that caregivers are often invisible in the health-care system, with their contributions going unrecognized as well as unrewarded.
“We really think about them as the glue that keeps the health-care system together.”
The article goes on to describe the cost to the care givers:
…61 one per cent admitted they took on the role because they believed they had no choice, with many at times feeling trapped, helpless, frustrated and overwhelmed.
The survey found 36 per cent of caregivers felt depressed and 33 per cent were resentful of their role, with almost half overall saying caregiving had negatively affected their ability to have personal time, engage in travel or enjoy a social life.
One-third said they had experienced financial costs due to caregiving, including out-of-pocket expenses, time off work and turning down career opportunities. Eight per cent lost their jobs due to caregiving responsibilities.
Beyond the statistics are the personal accounts.
(76 year old Don) Mahood was Mary Charlotte’s 24-7 caregiver, until his wife of more than 50 years was moved to a long-term care facility about a year ago.
“At the end, I had to dress her, bathe her. I had to do everything, she couldn’t brush her teeth,” he said. “When I look back, I don’t even know how I did it myself.
“I was worn to a frazzle.”
Though caring for his wife was a labour of love, the disease put an end to their plans to spend part of their retirement years in Florida. Mahood also had to give up activities such as playing hockey, and his social life faltered as long-time friends dropped by the wayside.
The winter holidays are here. There will be funds appeals of all kinds, and Facebook memes of appreciation for those who work while others party. And all of those are good things – not knocking them at all.
But don’t miss that rapidly drying out bit of glue that helps keep society together – the amateur, shanghaied-by-circumstance army of folks in homes all around us, trying to keep things festive and “normal” in situations that ain’t.
To mix metaphors, I’ll recall what Jesus said to his disciples, You are the salt of the earth, but if salt has lost its taste, how shall its saltiness be restored? It is no longer good for anything except to be thrown out and trampled under people’s feet. (Matthew 5:13) Care givers around us know what it’s like to lose their vigor and be trampled down by routine. We look like ourselves but we lose ourselves.
Sorry to have been incommunicado for so long. Various aspects of life have run over me like a train of late.
This morning a friend was asked about her laid up spouse, “How is he?”
She replied, “He was very grumpy.”
I actually had something to say about that and I’ll repeat it here,
Sometimes grumpy just sneaks up and whispers in your ear.
…”grumpy” is a frequent state for someone in your care. I interact with lots of other caregivers and it is one of the most frequent laments – “Why is the person I’m taking care of so nasty to me sometimes?” The loss of health and with it the loss of freedom, power, and whatever else gets dumped on the person who is loved, trusted and, unfortunately, in firing range. Praying for your husband… and praying for you as you help carry this cross.
To which she replied, “Tim, that was brilliant and you’ve changed my life so much for the better.” “Well my hubby has earned a master’s degree in grumpy lately. Even his legendary sense of humor is in recession.”
Grumpy goes with the territory in care giving. It’s one more stinky pile of what we walk through. We need to remember that those in our care would give anything to get up and walk freely through something, even a stinky pile of whatever. And whether we recognize it or not, they sniff out the bad moods we try to hide from them.