About caregivingstinks

We hope to mix hope, tenderness and an occasional laugh with tales of frustration, hard work and bodily waste.

Autism and Covid-19 Strategies

This is a good resource from a professional in the special education field.

From the larger article, which is well worth your time if you have school aged kids with special needs:

So, your home is not just your home now-a-days, it’s your child’s classroom, your office, the playground, the dining hall, the sleep space, and everything in between. Do you want to prevent your home from becoming a mad house? Do you want to keep some sense of structure?! If so, then you need to SSOAR. SSOAR stands for:

S: Structure

S: Schedule

O: Organization

A: Accountability

R: Routine

Without SSOAR, it is more likely than not that your house will be a stressful, unorganized place where it will be very difficult for any of the family members to thrive – including you!

From all my years of teaching, I can tell you that all kids, especially those with special needs, NEED a daily schedule and routine. They thrive off of predictability and knowing what is expected of them. Without a daily schedule and routine they feel lost and confused.

This is why teachers LOVE charts! There are so many types of charts that can be beneficial to your child. Children need to be taught that although they are having school in the home setting now, they must still follow rules, have responsibilities, and strive to reach goals.

Below is a list of charts that you can use at home and can be beneficial to creating SSOAR for you child…

There are all kinds of useful tips for activities and resources you can create at home. With the coming school year still an iffy proposition for kids and caregivers alike, I hope this is useful.

Advocacy and Affirmation

The world around us lurches from crisis to crisis, which is a condition many family caregivers would call “the usual.”

We find ourselves doing a bit of advocacy for our son, Joey. I need to stay away from TMI out of respect for his housemates, staff and service agency. Long story short, the long quarantine without their day programs and social visits is creating anxiety among the residents. One of them is having meltdowns, and our son is sometimes a target of these.

The staff floated some solutions, including moving Joey to a different room to allow greater staff control of the situation. We (Melissa and me, mom & dad, GUARDIANS) looked at each other and were in immediate agreement that this would only increase Joey’s anxiety and, in plain talk, wouldn’t be fair.

So we’ve dug in our heels and are arguing for other solutions. It’s not pleasant. We know that the housemate who is melting down is NOT a bully, but a person unable to process and express his frustration in more socially appropriate ways.

It’s weird to be in this place again. We thought that we were done with advocacy stuff once Joey was out of the school system. And, to be honest, we’re a bit spoiled as our experience of his service agency has been overwhelmingly positive.

But, as we said in our letter, We do not want Joey to have to leave his current room downstairs.  We are confident that this view is an accurate reflection of Joey’s desire. That is, even with great people caring for him, we know him best. We are still his parents by blood (and sweat and tears) and his guardians by law. So advocate we will.

The title of this piece mentions affirmation, and there’s been some sweet stuff on that front. During the quarantine, we’ve been making and delivering dinner to the group home every Friday. Here’s a big pan of spaghetti and meatballs, plus some sides, on the way last Friday.

The house staff put together a thank you, to which all of the residents affixed their signature or mark:

Gestures like this are solid gold. Care giving can feel fruitless and thankless, and this bit of affirmation lifted our spirits. And they topped it with a special card from Joey recognizing our 30th wedding anniversary:

Joey’s not that lyrical or loquacious, so we know the staff put some heart into the message. But that’s a real live Joey signature endorsing it, and no doubt he affixed the stickers.

Affirmation sneaks up sometimes. I’m a daily Bible reader. We all need sources of inspiration and encouragement, and as a Christian I find mine there. But it doesn’t always tell me just what I want to hear – many days I read right into a discovery of my worst self in action and that hurts. However…

…in the days just before delivering that spaghetti dinner to the group home, my reading schedule took me to Ecclesiastes 11:1-2,

Cast your bread upon the waters,
for you will find it after many days.
Give a portion to seven, or even to eight,
for you know not what disaster may happen on earth.

That is, what you give away comes back to you in some way, and those who care for the needs of others are under God’s care in the crises that come again and again. I really perked up at “a portion for eight,” since that’s our planning number for the Friday dinners.

I also bumped into Jesus’ words in Luke 14:13-14,

But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you. For you will be repaid at the resurrection of the just.

It hit me as an affirmation and made me misty eyed. We started doing these Friday dinners just as a way to stay connected. Our motive was not all generosity – we wanted an excuse to at least see and wave to Joey. Yet in Jesus’ words I recognized that care giving, by its nature, can make us the hands and feet of the divine Lord, doing the things that please God as we serve others for Him, not for what we can get out of it.

For you will be repaid at the resurrection of the just... caregivers know that the rewards are not always here and now; if we expected that, we would go mad. Heck, many of us are already about half past crazy. But it is a profound affirmation to hear that the Creator of all things notices us and can make a glorious future for us, whatever crises, failures and let downs we lurch through here and now.

Memorial Day: Autism Among the Fallen?

A few years ago the media picked up on Israel’s active recruitment of people on the autism spectrum to serve in certain specialized military roles.

While the Armed Forces here in the U.S. automatically disqualify applicants with autism, there are waiver provisions allowing people with the diagnosis to serve. The standards vary from branch to branch.

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.”

In wartime, all kinds of standards go by the wayside. Plenty of Americans, due to patriotic fervor or financial desperation, lied about their age, medical condition or immigration status to sign up for combat – and the government, desperate to fill the ranks, didn’t give them too hard a screening. Such was the case with one of our most decorated soldiers of WWII, Audie Murphy.

So it’s likely that autistic Americans have gone in harm’s way for the rest of us.

Identifying them is not easy. Through the middle of WWII, autism wasn’t even a known diagnosis.

Which means that those autistic Americans who gave the last full measure of devotion are like those in The Tomb of the Unknown Soldier, which is inscribed

Here rests in honored glory an American soldier known 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.

Featured image is of Black Hills National Cemetery in South Dakota.

Quarantine Impact On People With Special Needs

We just got news from ours son’s service agency that our separation must continue, at least into the near future. A group email from the agency included,

People living in (Agency) settings cannot go back and forth between their family home and their (Agency) home.

It is sad but necessary. Even if people with special needs do not have medical conditions that make them more at risk from Covid-19, they might have behavioral factors like not washing hands without direct supervision. Or sensory issues, like overwhelming discomfort with face masks (the sensation of the mask on the face or the feeling of straps around the ears or both).

Many people with special needs live in group homes or institutions with dense population, so as we’ve learned the hard way from nursing care facilities it is essential to control contacts in order to keep the virus out.

We know from a staff contact that something like cabin fever is setting into our son’s group home. Anxiety is high and behaviors reflect that.

I wanted to get some perspective from people with special needs as to how they’re dealing with the quarantine. I reached out to one very verbal young guy, but I framed my question poorly.

I asked Has Covid-19 caused any problems for you?

I should have anticipated him reading that in the most literal sense. His reply was I’m healthy.

But on his Facebook page, I found this, dated two weeks ago: Hey everyone friends and family I am going stir crazy I miss doing my special Olympics events. I hope we get back at it this fall.

The mom of a non-verbal daughter with autism tweeted, her schedule has been gutted due to Covid closures. Fortunately they are in a place with open beaches and the young lady loves spending time in the surf.

Cabin fever due to lost opportunities is not unique to the special needs community. Neurotypical folks who’ve lost work or social activities are sad, angry, anxious, depressed and all kinds of other stuff, too.

It’s hard for me to comprehend, let alone express, the difference between a quarantined person with autism and a neurotypical person stuck at home. I’m prone to read it my way and treat it as an emotional matter.

But the difference is that of a person with a hand on a hot stove. Our well intended responses to a person laid off from work – “Hey, you’ll be OK,” “Hey, the government is sending a stimulus check,” “Hey, you still have your health and family” – would be considered inappropriate (if not insane or sadistic) responses to a person whose flesh is charring.

Many people with special needs, like my young friend missing the Special Olympics, can understand rational explanations like “There’s a bad bug out there and we have to stay home so we don’t catch it.” Yes, he’s bummed about the disruption of things he likes, but he gets it.

Many others, like our son, are more like the example of a person getting burned on a hot stove. There’s pain and all kinds of other neural sirens blaring through their system and not open to reasonable words about cause and effect or promises of a better tomorrow.

For caregivers it’s the ongoing nightmare of stuff you really don’t get and can’t fix for those you love.

Since You Can’t Take Mom Out To Dinner…

Not to discount the work of husbands, dads, brothers and other caregivers, but women are the historic majority of caregivers.

Mother’s Day is at hand in the U.S., and it’s shaping up to suck. Everybody’s been stuck at home together with school closures, work shut downs and furloughs and quarantines. Restaurants are closed, so mom doesn’t get a dinner out (and the restaurants lose another important date for staying profitable and keeping folks employed).

Now, I’m a decent cook and could whip up one of my wife’s favorites at home, but I’m at work most of this coming Mother’s Day AND she’s under the weather and talking about a menu just makes her queasy.

Adding insult to injury is our local son stuck in his quarantined group home. 3 miles away and we can’t get mom and him together. Henry the Golden Retriever better make extra effort to be a good boy this Sunday.

So,with all this woe duly wailed, I’ll at least offer this online tribute to care giving moms, in particular my Melissa. Enjoy some pics of her adding love and joy to our lives…

She brings a smile when Joey’s grumpy.
She goes to restaurants where she can’t eat most of what’s on the menu because it makes Joey smile.
She raised a Naval Officer!
She shares love with our friends’ kids, too!
She indulged me in a Sake Bomb after we moved Joey into his group home, even though she was feeling less festive than I.
Even though Joey doesn’t drink, she took him to a grown up venue for his 21st birthday burger!
She’s adopted a number of other family members over the years.
She married me and May 26th will be 30 years (that’s Pearl Anniversary if you’re sending presents).
Join me in wishing her a sweet Mother’s Day!

Reach out this weekend and show some love to some of the locked in moms and other caregivers. There are plenty of women out there who, by caring for those not their own flesh and blood, should be honored as moms just the same…

Greet Rufus, chosen in the Lord; also his mother, who has been a mother to me as well. (Romans 16:13)

Special Ed Distance Learning

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.

“But We Had Hoped…”

Hope you’re all well. Hope you are getting gorgeous spring weather like we are here in Sioux Falls, South Dakota, where our lad Henry the Golden Retriever enjoyed a long Sunday stroll.

I attended church online Sunday morning and the message was on my mind as I walked the dog. In last Sunday’s Bible lesson there’s a back and forth between Jesus and two of his followers who think he’s dead and gone. It includes

“…our chief priests and rulers delivered him up to be condemned to death, and crucified him. But we had hoped that he was the one to redeem Israel…” And he said to them, “O foolish ones, and slow of heart to believe all that the prophets have spoken! Was it not necessary that the Christ should suffer these things and enter into his glory?” 

The preacher pointed out the gap between the expectations laid on Jesus by the two followers – we had hoped – and the reality defined by Jesus – was it not necessary?

Are you feeling frustration as a caregiver (or in just about any other life role)? It is likely that you’re in that gap between the expectations you’ve laid on reality and reality itself.

One of the big and obvious expectations is that your sincere efforts and good intentions should provide wonderful outcomes. Those in your care should be happy, progressing in life skills and enjoyments and thankful as all get out for your labors.

In contrast, the reality may leave you gasping But we had hoped.

We do a formidable job of laying our expectations on God or the universe or whatever greater reality we posit. And we certainly lay them on those around us.

The cosmic reply is Was it not necessary that…?

We had hoped that those in our care would fall in line with our well devised plans. Was it not necessary that they should find their own hopes, dreams, pleasures and directions – even their own blunders – apart from ours?

We had hoped that taking care of others would be enough and that some of life’s other demands would pass us by. Was it not necessary that the fullness of life, pleasant and painful, be our lot, connecting us with all other human beings?

We had hoped that bending our lives to the needs of others would make us into valued and happy people. Was it not necessary that we find our value and joy as unique people instead of as reactive extensions of others, dependent on their moods for our validation?

We had hoped that a big, dependable world of institutions would take care of us. Was it not necessary to see that all the institutions are fragile and flawed and that we, with all of our personal limitations, remain the first and best resource to those in our care?

I think one of the opportunities within the shutdowns and quarantines is the time and space to tumble into the gap between our expectations and reality, and to start climbing back up the slope toward the reality side. It can be exhausting and leave us with a good share of scrapes and bruises, but, like Jesus told those two guys, it is necessary if we’re to find a glorious outcome.

Covid-19 Caregiving Quirks

Too much or too little, it seems.

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.

Workplace impact of care giving

Good quick read at ThinkAdvisor.  It won’t surprise you if you’re a caregiver. But I hope it reaches you before you get to the point at which I found myself a few years ago.

…approximately 68% of working parental and spousal caregivers said they were subject to at least one of eight different effects on their jobs because of providing care to a loved one.

There is a link to the full Government Accountability Office report, which includes this graph of the eight workplace effects,

Caregiving workplace impact GAO

Raising our son with autism piled up stress over the years, and in a job which required intense people work and difficult decisions, I began to falter.  I suffered a number of these effects,

  • Care giving situations made me come in late, leave early or miss work altogether on a regular basis.
  • “Leave of absence” and “left work entirely” merged in a catastrophic case of burnout.  The 24/7 stress of workplace and care giving demands led to poor decision making and lack of energy at work, eventually diagnosed as depression and off the charts anxiety.
  • Although I received some kind help that got us through and got me back into the workforce, the financial fallout is still with us.

My advice from hindsight is to trust your instincts.  Don’t try to “fake” or “tough” your way through when you sense you’re in trouble.

When you know that “this isn’t working,” initiate adjustments.  Talk to your employer about the situation – a change of shift, department, location or even position within the organization might be helpful.  Reduced travel time, better synchronization with family schedules and other time impacts might be available.

Begin to crunch numbers and, if you’re married, get into a substantive discussion with your spouse.  I was so ashamed of what I was feeling that I tried to “handle it” myself – working as a couple might have generated solutions that I missed.  What changes of income are needed?  If more, what can your situation tolerate in terms of more hours or travel?  If income must come down, what can be cut out of current spending to accommodate the change?  What options, if any, does your spouse have on the money front?

Don’t make major decisions in the midst of emotional upheaval and don’t make them alone.

Value and stand up for your insights when you know you’re right.  Caregivers get used to being flexible and not insisting on our way in order to roll with the needs of others.  But sometimes we need to draw lines and make decisions for the family good.  It’s too easy to back down and do what we think will keep things “calm.”  All we do is create a ticking time bomb emotionally, financially, in relationally and, if working, professionally.

Yes, follow the constant advice to “take care of yourself.”  I know, I know… I heard and ignored it too.  Eat right, get sleep, exercise and nurture your mind and spirit.  Seek God’s presence – but watch out for magical thinking.  You know, “If I pray hard enough or make enough sacrifices, God will fix this.”  God will help you to endure and will guide you, but the “fixes” will often involve uncomfortable commitments and actions.  Make the right choices, guided by the moral teaching you claim to follow, rather than making compromises that temporarily ease your stress.

It’s never been the position of this blog to lecture you from a point of expertise.  So I hope that sharing my profound failures is a useful way to reach out and help.  Please take good care of yourself – those in your care need you to be you.

Fireworks Safety

A man with autism gives some good safety advice for the 4th of July. Families living with autism find Independence Day a challenge: crowds, sensory issues, medication and sleep routines all conspire against barbecues, fireworks displays and even downtown parades.

Hello my name is Daniel and I’m going to be writing about fireworks safety. Never buy fireworks intended for professional displays because they carry a propellent that will ignite in certain conditions and are not for private use. Certain conditions will cancel displays like a risk of dry brush that might ignite due to fireworks or thunderstorms might also cancel fireworks displays.  Supervise young children around fireworks or they could get hurt by the explosions. Certain types of fireworks are illegal under state law so only buy appropriate fireworks and use as directed on the package. 

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