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.
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.
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.