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.
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.
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.
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.
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,
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, 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)
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…
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.
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.
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.
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 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.