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.

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.

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.

No. Words.

32t0b5No, I don’t mean people who are non-verbal due to disability.

I’m talking about me with my jaw on the floor, gobsmacked as my Brit friends say, verklempt.

A friend sent me this news coverage of a Gary Indiana school (well, at least a teacher therein) that gave a student with autism a year-end award as BAILEY PREPARATORY ACADEMY 2018-2019 MOST ANNOYING MALE. 

Given the reality of fake news (uhhh, does that make sense?) and a recent distortion of euthanasia news from the Netherlands,  I wondered if this Indiana story was true.  As far as I’ve been able to discover, it really happened.

From the story,

He [dad Rick Castejon] said that his son is nonverbal, occasionally rocks back and forth and can become easily emotional. Teachers often call with concerns about how to handle his son’s behavior, the father said. 

“They called me all the time if he didn’t want to work, would cry or would have a breakdown,” Castejon told the newspaper. “A special needs education teacher should know how to handle these things.”

You would think.  As was I by reading the story, the dad was stunned by the – uh – gesture, and just wanted to walk away from it,

Castejon said he didn’t want to create a scene and tried to leave the award on the table at the end of the lunch, but his son’s teacher reminded him to take it with him. 

There are all kinds of directions in which to run with a story like this, but I’ll just stick to the care giving focus of this blog:

Caregivers are blessed, by and large, with well meaning professionals in education, medicine and other fields.  But at the end of the day, we remain the primary caregivers and best advocates for those in our care.  Even when words fail us, and we just want to scoop them up and carry them from hurts.

And, thankfully, some hurts don’t reach them.  It’s unlikely that Mr. Castejon’s son understood the “award.”

But his dad, his caregiver, felt the hurt.  That’s some of what we do.

And it stinks.  But like anything else, it can be sacred work,

Don’t repay evil for evil. Don’t retaliate with insults when people insult you. Instead, pay them back with a blessing. That is what God has called you to do, and he will grant you his blessing.   (1 Peter 3:9)

Do not be overcome by evil, but overcome evil with good.  (Romans 12:21)

Puppy Dog Tales

Yesterday was the long anticipated Sunday night battle on Game of Thrones introduction of our son with autism, Joey, and our new puppy, Henry.

It was, well, autistic?

Henry wiggled up all full of canine cuteness and joy and Joey didn’t make eye contact.

“Joey, this is Henry” we squealed with caregiver cuteness and joy.

“No” came the J-man’s “I’m not interested” reply.

Henry Peter Griffin pose

Reminds me of Peter Griffin after a fall on Family Guy.

Henry sulked.  His 8 puny weeks of life have been non stop adoration by the cosmos.  When we apologized for posting so many puppy pictures on social media, several people replied “There’s no such thing as too many puppy pictures.”

So Henry had his first moment of existential rejection, courtesy of autism.

887210_A140107_004A

 

 

 

It’s not that Joey doesn’t care.  His affect was aloof when it came to Lily, our dear departed Black Lab.    But when we she spent a night with the vet Joey wore a distressed face and kept saying “Lily’s not here.”

Henry just experienced one of the stinky things about care giving.  You put your emotions out and you don’t get the responses you want.  We’ve been relatively blessed, as Joey has been emotionally connected (albeit expressed in some roundabout ways); many families of people with autism would kill to get even some roundabout engagement.

Lily last picture

In her day, Lily wasn’t put off by Joey’s autism.  She would hover protectively after he suffered seizures.  And in my very last picture of her  – wouldn’t you know it – she’s sharing sunshine with Joey by last year’s freshly cut Christmas tree.

 

As for Sophia the cat?  fuggedaboutit

 

Be a voice while waiting for a voice

APRIL IS AUTISM AWARENESS MONTH

A mother with considerable language skill shares about coming to terms with her daughter’s autism:  

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.

 

Rules of Engagement

APRIL IS AUTISM AWARENESS MONTH.

Yeah, this post’s title is a military term.  Rules of engagement tell you when you’re allowed to shoot back.

Sometimes care giving feels like combat, albeit in non-lethal form.

One particular battle is the effort to engage people with autism in collaborative behavior.  I was going to say meaningful behavior but that assumes that people with autism are absorbed in meaningless behavior on their own, which is not true.  Their behavior has great meaning to them, even if we can’t always crack the code and understand it.  And who knows, maybe they perceive our antics as meaningless.

OK, back to collaborative.

Our 25 year old son with autism, Joey, lives in a warm and supportive group home here in town.  Our custom is to pick him up on Sunday afternoons for dinner and an overnight with us.

We try to engage him in play, household activities or just chit chat.  None of these have ever been among his favorite things.  And as we shared a few weeks ago, his priority right now is to negotiate and nag about an unavailable form of entertainment he used to enjoy on his own.

So there’s some creative combat as we try to get him to say or do anything besides chanting “VCR will be here soon.”

Music usually engages him, but he’s figured out that playing tunes on our computers or phones is our effort to stifle the VCR negotiation.  So he either covers his ears and stomps away, whines “No MUSIC” or, wonder of wonders, forms a sentence to say, “I want quiet, please.”  Which is collaborative communication, except it leaves us all staring at one another non-collaboratively.

So I ran and got some picture books from our years of accumulated kids’ books.  We got a few smiles out of him with our funny character voices,  but he would not sit on the couch with us to look at them, let alone read with us.

So Melissa continued to try an engage him in talk or music while I huffed away to empty the dishwasher (does he think I’m engaged in meaningful behavior when I do that?  Do I?)

Then a little light bulb fizzed on over my head.  I said, “Hey Joe, come in here with dad.”

He glowered at me.

“Come on and help dad,” I chirped.  “This will be FUN!”

He uncurled from the couch and stood looking at me.  I indicated the silverware drawer.

20190331_213344“Help dad put these away.”

I handed him a butter knife.  Lo and behold, he put it in the slot with the other knives.

“Good job with the knives,” I oversold the moment.  Then I gave him a salad fork.

He put it in with the other smaller forks.  That was impressive, as he could have just mixed it up with the larger dinner forks.

I commenced praising him and called out my delight to Melissa.  I was going to move on to spoons, but he made an annoyed face, sounded off with his go-to word, “NOOOO,” and returned to the couch.

We counted the night a success.  Caring for people with autism requires rejoicing in small victories, connections that might seem trivial in what we perceive as normal life.

We’re still refusing to chase after another VCR.  But we are adopting a puppy.  And we’re provisionally excited, because Joey made eye contact and whispered “Yes” when we told him about it and Melissa showed him pictures like this one:

20190330_130429

This little guy is named Henry.  We hope he will help us with some fun engagement with Joey.  That is, once Henry’s done eating Melissa’s glasses.

So, what forms of engagement reach the one(s) in your care?  Always open to new tactics.  What works with one person with autism doesn’t necessarily reach the next one.

Very often, the most loving care is to keep showing up, trying again or trying something new.

And sometimes just showing up and letting them be.

Are you a family caregiver or know someone who is?  Consider getting or gifting our little book for this Autism Awareness Month.

 

Annuals

Our publisher’s site has another excerpt from our book up for ya.  It posted with some typos (since corrected) which was kinda funny because it is an excerpt about things getting out of our control…

Flowers Olde RectoryHere 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.