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.
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…
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)
I could be glib and suggest that any effort to communicate across special needs is a form of distance learning.
But Special Education presents challenges in the best of times, and even more with the school closures due to Covid-19.
Our local news aired a good feature on this. It gets beyond lamenting the hardship to show some of the creative efforts to keep Special Ed going over distance. The needed collaboration of family and school comes into focus, and maybe that’s one of the silver linings of our Covid-19 cloud. As one Sioux Falls teacher explains,
For my students who are more significantly impacted and have those significant disabilities, a lot of the time the parents are the ones working one on one with their child doing the things that I have assigned, but they’re really the ones that are really providing those interventions, through my specialized instruction that I’m providing them and the tools that I’m giving them.
It’s all individualized based on what the family needs, for what is working for their family, and where families are at. So if families are feeling overwhelmed and their focusing on the mental and physical health of their family, then that’s what I’m stressing, first and foremost, before anything academic.
I think it safe to say that family caregivers are always essential personnel, albeit unpaid and unable to be laid off even if we wanted a furlough (which some days sounds super attractive).
The news segment reports the painful reality that sometimes the family caregiver is the only one on the job. As one disability rights advocate relates,
We’ve represented a couple families who have had issues with schools not providing services, not providing the related services like speech and physical therapy and occupational therapy, and so we’ve worked with the parent and the school to create a dialogue and support the parent, so that the school understood their responsibilities to provide services.
I’ve shared here that we are empty nest, with the school days behind us. But hearing reports like this one lights up the old feelings, and our hearts go out to families still on that leg of the care giving journey.
Keep at it. Even with the gaps and failures, personal or public, you’re the best resource to those in your care.
As you might guess, many families are dealing with special needs kids at home since schools and other community programs are closed. They fall in the too much bunch. For the caregivers, there’s no respite. Now they are having to go all in as teachers and therapists on top of all the other roles caregiving demands.
And for many kids with special needs – autism in particular – the disruption of daily routines and relationships is hell.
So you’ve got disoriented kids seeking to reorder their connections to the world and overtaxed caregivers trying, in the best case, to help that happen – but also tempted by the rush of demands to impose an order that just exasperates and exhausts kids and caregivers alike.
Our family is in the too little bunch. Our son is safe and well cared for in his group home, but that’s where he stays 24/7 as all off site programs shut down when the schools closed.
And we can’t take him out for a visit – if we do, he has to stay here indefinitely. And having lived that life for a few decades, we aren’t up to jumping back into the too much bunch.
We’ve tried to generate some family connection by making Friday night meals to deliver to the residents and staff of the group home. We sent along the smiley picture and greeting poster below. Joey came down to the door when dropped it all off the first night, so we got to wave and say some hellos.
Since then, he’s decided not to come to the door, preferring to do whatever he does in the run up to dinner. The second night we dropped off a meal, our call of, Joey, come to the door was answered with a big ol’ NOOO from his inner sanctum.
Yep, that was too little for us but it gave us a laugh as that’s Joey’s personality. It doesn’t mean a lack of affection, just means that he’s comfy where he is and we’ll get back to weekly visits at our house when this virus stuff is lifted.
Just brainstorming here, but what are some things we can do to help out our too much and too little care giving neighbors?
For those who are in the too much bunch, locked down all together, providing respite isn’t an option since it will violate social distancing. But that doesn’t mean you can’t call, text, video chat, drop greeting cards or send other signs of affection.
Also, with many markets restricting shoppers to one person per cart, families with special needs kids are more restricted than most when it comes to grocery runs. Maybe you can pick up and drop off supplies – sure, it’s nice if you can gift the stuff, but even if the family is game to pay you will be doing a big service by shopping and delivering.
If you have some good educational, social or therapy activities that have worked with special needs kids, pass those along to families who are navigating too much territory. Your experiences can make their extended time together more enjoyable and productive.
For the too little league, find out if there are things you can do to support the residents and staff who can’t venture out or welcome visitors. Food is always fun – we are enjoying the weekly dinner prep and delivery to Joey’s group home. A local pizza place has been delivering meals to the staff at local clinics and care agencies. Partner with friends, neighbors, churches, local businesses, etc. and come up with fun ways to send some love and practical relief where folks have too little contact with loved ones outside.
More thoughts, ideas or just plain venting and pleading? All are welcome in the comments here or at our Facebook Page.
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.
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)
I’m coming off a very sweet weekend in which Melissa and I marked 29 years of marriage (the large part of it as caregivers) and many kind people graced my retirement from church leadership.
It is one of those forks in the road where I guess I’m supposed to type memoir-like thoughts. But I’m not. The fork is not confusing and I don’t need to linger; I know where I’m heading next, at least in the short term.
I’ll be working at a local hospital in a specific kind of work, sterilizing medical implements. It won’t be the kind of people-work that rides on one’s back all the way home and then sprawls all over one’s family and personal life.
I’m glad for it. I applied for some other, more lucrative public service positions, but those didn’t come through – and in short hindsight I think that’s a blessing. I couldn’t have given the emotional quality of work they needed.
The decades of family care giving simultaneous with the emotional demands of church leadership took a toll. There were various highs and lows, but I’m not going back over them with a lot of “woulda shoulda coulda” self-absorption. They were what they were. I lifted a lot of people up and I let a lot of people down. Such is human life.
Looking at myself honestly in the here and now, I can say that I have a good number of emotional punctures. Not enough to incapacitate me or require major repair, but enough to know I need to keep things as simple as I can. I’m like a garden hose with some nicks – sure, it’s not perfect, but it’s not time to throw it away. It gets most of the water where it needs to flow. A spot of duct tape and all’s well.
Care giving takes a toll. I say that without shame. It’s diminished me in some ways.
And I know it’s improved and enriched me as well.
If you are a caregiver in the trenches, you’re not crazy and, most of all, not a bad person (more than any other ) when you feel your nicks and leaks. Care giving is costly. As is anything ultimately worthwhile,
…through many tribulations we must enter the kingdom of God. (Acts 14:22)
Holidays are seldom restful for caregivers. Supports like schools and community centers are closed, the ones in our care can be upset by disrupted routines, and our instinctive savoring of “time off” crashes into extra hours of greater demand.
The need to pace ourselves and embrace our reality is acute. Family care giving is not contained between punches of a workplace clock and seldom gives the satisfaction of “done.”
Memorial Day provides a long weekend.
The long Memorial Day weekend honors those who died in combat. As one hears at funerals, they rest from their labors.
The long weekend indulges the living who have the freedom to travel, party or just be couch potatoes for a bit.
For family caregivers, it’s just long.
If you have a care giving family on your block, they might not be able to come to the park or even the party in the next yard.
But you might knock on the door just the same to drop off a plate of barbecued goodness and with your kindness make the weekend a little less long on their end.