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:
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.
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.
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 anyproblems 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.
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.
“…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.
People of faith pray for those in our care, but can experience frustration when we seek the intimacy of praying with them. The communication barriers between us can sink even simple conversation, let alone deeper dives like prayer.
I follow a gent in the UK who tweets as Disability&Jesus ( @DisabilityJ ). He’s an advocate for inclusion and accessibility in churches. He also promotes and participates in a website called An Ordinary Office. “Office” here is used in a church context, meaning the marking of different times of day with prayer.
The site provides three formats to include differently abled people in the same prayers:
Makaton, a picture system (in some ways similar to PECS)
Text for reading
Here’s a screen shot from the Makaton version of Morning Prayer,
Again, the site offers this same prayer is available in text and audio to include as many as possible in worship.
Of course it is worth remembering the very intuitive aspect of prayer; a person with special needs may well appreciate and benefit from your offering of prayers in which s/he doesn’t seem to be participating.
Like everything else in care giving, prayer will require persistent experimentation. No one method will work with all people.
But cheers for the folks who offer An Ordinary Office. They’ve come up with an accessible means to gather people of differing abilities in common prayer.
No, 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.
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)
Jean Vanier died on May 7th. He was a gentle presence who moved people to significant action and life changes. I was privileged to hear him speak about twenty years ago in Southern California.
Vanier founded L’Arche and Faith and Light, now more than 1,500 communities in which “people with and without intellectual disabilities” live more as families than as professional caregivers and patients. As Vanier said of L’Arche,
Genuine healing happens here, not in miraculous cures, but through mutual respect, care, and love. Paradoxically, vulnerability becomes a source of strength and wholeness, a place of reconciliation and communion with others.
He translated family-style care giving into “institutions,” encouraging vulnerable amateurs to practice companionship and respect rather than technique. His approach has been replicated in communities around the world, and to needs beyond intellectual disabilities.
The seats of the ample conference hall were filled.
The current staff and residents, including our son Joey, were all there.
Other employees of the agency were there.
Other recipients of agency services came.
Former employees who knew Bill, including the Pastor who led the service, were there.
When given an opportunity to share memories of Bill, there was no lack of speakers, prepared and impromptu.
A message that echoed through the memories recalled the values that Jean Vanier carried in his work and that many caregivers who’ve never heard of him carry in theirs:
We’re not staff and clients, we are more like family.
There was a slide show of Bill’s life and a display of his favorite things. The whole event reflected “person centered care,” valuing Bill not only as part of the community, but as an enrichment of it.
Bill’s warmth – manifested notably in a thunderousHi! and sweeping wave of his hand to group home visitors – was a gift to our family as we went through the emotional time of transitioning our son into his new house. We trusted the staff and liked the house’s set up, but to experience immediate warmth like Bill’s was an extra that softened the big change in our family’s life.
Bill’s loved ones donated his belongings to the home to use as needed, and Joey inherited a recliner chair that he’d coveted and attempted more than once to occupy. We will still think of it as “Bill’s chair.”
Jean Vanier, known around the world, and Bill, loved locally, merge into one. Both reflect a community of love – relationships entered into vulnerably – as the model for care giving.
I came away from Bill’s service red eyed but uplifted. The community is diminished, temporarily, yet lives in love.
Whatever their gifts, or their limitations, people are all bound together in a common humanity. Everyone is of unique and sacred value and everyone has the same dignity and the same rights. (Jean Vanier)
…we are to grow up in every way into him who is the head, into Christ, from whom the whole body, joined and held together by every joint with which it is equipped, when each part is working properly, makes the body grow so that it builds itself up in love. (Ephesians 4:15-16)
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.
“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:
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.
But on the gift front, we are stalled. We were messaging with his older brother last night, and at a loss for ideas.
His gift choice for most of his life has been movies – – – in VCR format. (The link takes you to a piece from the Wall Street Journal, which, if you can get past the subscription sales pop-ups, speaks fondly of the technology as antique and having reached its demise.)
Actual morgue photo.
You can still find VCRs for sale, but they’re increasingly expensive and impossible to maintain or service. Our son is a button pusher extraordinaire, and the contraptions give up the ghost to that or to the funk of his very old video collection.
We are feeling for him. Melissa points out that this has been one of the principal pleasures of his life, and now it’s gone. He’s chafing at our suggestions of watching his movies on his computer, but that seems the best way to go. He’ll trash or lose discs, thumb drives and other such media.
Anybody else made this transition? Wide open to suggestions, both on replacement media and techniques for helping him embrace it.