Special Ed Distance Learning

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.

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.

The weekend’s getting long

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.

 

“To The Other Mother”

Greet Rufus, chosen in the Lord; also his mother, who has been a mother to me as well.  (Romans 16:13)

Joey 21 McNally

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,

DiamondsIn 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…

 

 

Two deaths, one love

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.

Today…

Bill… I went to the conference center at the community agency that is the home for our son with autism.  They were holding a memorial service for Bill, one of the four other men with whom our son shares a group home.  Bill died late last month.

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 thunderous Hi! 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)

Hi!  (Bill Wilde)

 

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.

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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.

 

There’s nothing like glue for the holidays

I came across a piece from Canada’s National Post that describes family care givers as the “glue” that keeps national health care in one piece:

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Man, ultimate? Waterproof?  In&Outdoor?  Wish I was this bada**

“Family caregivers provide the vast majority of care that happens in-between appointments with physicians or in-between hospital stays or different interactions with the health-care system,” said Christa Haanstra of the Change Foundation, an independent health policy think-tank dedicated to enhancing patient and caregiver experiences.

“There’s a lot more health care happening in the home, provided in large part by family caregivers,” said Haanstra, noting that caregivers are often invisible in the health-care system, with their contributions going unrecognized as well as unrewarded.

“We really think about them as the glue that keeps the health-care system together.”

The article goes on to describe the cost to the care givers:

…61 one per cent admitted they took on the role because they believed they had no choice, with many at times feeling trapped, helpless, frustrated and overwhelmed.

The survey found 36 per cent of caregivers felt depressed and 33 per cent were resentful of their role, with almost half overall saying caregiving had negatively affected their ability to have personal time, engage in travel or enjoy a social life.

One-third said they had experienced financial costs due to caregiving, including out-of-pocket expenses, time off work and turning down career opportunities. Eight per cent lost their jobs due to caregiving responsibilities.

Beyond the statistics are the personal accounts.

(76 year old Don) Mahood was Mary Charlotte’s 24-7 caregiver, until his wife of more than 50 years was moved to a long-term care facility about a year ago.

“At the end, I had to dress her, bathe her. I had to do everything, she couldn’t brush her teeth,” he said. “When I look back, I don’t even know how I did it myself.

“I was worn to a frazzle.”

Though caring for his wife was a labour of love, the disease put an end to their plans to spend part of their retirement years in Florida. Mahood also had to give up activities such as playing hockey, and his social life faltered as long-time friends dropped by the wayside.

The winter holidays are here.  There will be funds appeals of all kinds, and Facebook memes of appreciation for those who work while others party.  And all of those are good things – not knocking them at all.

But don’t miss that rapidly drying out bit of glue that helps keep society together – the amateur, shanghaied-by-circumstance army of folks in homes all around us, trying to keep things festive and “normal” in situations that ain’t.

To mix metaphors, I’ll recall what Jesus said to his disciples, You are the salt of the earth, but if salt has lost its taste, how shall its saltiness be restored? It is no longer good for anything except to be thrown out and trampled under people’s feet.  (Matthew 5:13)  Care givers around us know what it’s like to lose their vigor and be trampled down by routine.  We look like ourselves but we lose ourselves.

Reach out.  Help the glue stay sticky and the salt stay salty.  Some practical ways to do that are suggested by another care giver and blogger.

Leaf me alone!

adult alone autumn brick

Photo by Pixabay on Pexels.com

Leaf me alone is ethnic humor that could once pass between friends of different backgrounds.  It was cool when my Mexican American friend used it 40 (are you kidding me?  Forty?) years ago in our Army barracks in (then West) Germany (quite a history lesson here, eh, kids?)

When my friend John C. (whom I annoyed by calling him Juan Carlos) was having a bad day, he would exaggerate a stereotypical Chicano accent and tell the world, Leaf me alone, esay.

It’s Wednesday as I type this.  Hump Day, midweek, and, deep down inside, a caregiver somewhere is screaming at the cosmos.  Leaf me alone, esay.

My morning meditation turned up that very scream, aimed at no less than God, albeit in an ancient Hebrew version:

Take your affliction from me; I am worn down by the blows of your hand…Turn your gaze from me, that I may be glad again, before I go my way and am no more. (Psalm 39)

While our insides might scream Leaf me alone and Turn your gaze from me, family caregivers are good at smiling for the outside world and thanking people for well intended compliments like You must be a very special person for God to entrust you with this.

Some friends are perceptive enough to make a face and say, Man, I’d go crazy if I had to do that.  Or, as one counselor told a family caregiver, You’re very skilled at living in hell.

I’ve noticed on doctor visits that the “depression inventory” forms the nurses sometimes require include feeling like you would be better off dead alongside the more direct any thoughts of harming yourself?

The former is more common.  It’s not necessarily a threat of suicide but is an inner dialogue by which overwhelmed people say leaf me alone.

That doesn’t mean we’re just “venting.”  It is horrible to be in the place where life (or at least our place in it) is no longer viewed as a gift to enjoy.  Such thoughts can indicate the need for medical help, and we shouldn’t be ashamed of that.  Care giving takes a toll.

No great advice for you here.  You already know the responses… things like

  • Take respite.  I know, I know, IF it’s available.  Which it sometimes ain’t.  Like a prison inmate, you might have to create it in your own head.
  • Have friendships/activities not tied up in care giving issuesLeaf me alone is about the grind, not about all relationships and activities.  Some are welcome – so welcome them.
  • Try to prepare and eat healthy foods.  I can tell you that I’ve become a decent cook over the years.  It is more work but if you fight off the urge to microwave junk and get on with preparing more fresh stuff, you’ll feel better and you’ll find some fun and good mental activity in it.  And talking about recipe ideas with others is a great way to keep conversations from wallowing in care giving stuff.
  • Exercise – even if just walking the dog around the block.  As Mrs. Obama said, Get up and move.  Get your blood flowing and your heart and lungs working.  Turn some of the boring household chores into opportunities to stretch and flex yourself.  If you normally reach with one hand to do a task, try using the other hand.  If you tend to favor one knee while kneeling to pick up stuff, bend the other one.  Your whole system will benefit from little efforts like these.  Taking on one resented chore each day can give a sense of accomplishment, too.

I know – these things are hard to establish and maintain in many care giving situations.  But they are the antidotes to Leaf me alone, which was funny the way my friend said it but not funny in care giving.

Recovery reversal

Our son with autism has Seizure Disorder in his overall diagnostic and safety data.  The seizures came on with puberty and were terrifying intrusions in his teen years.

Now he’s in his 20s and the seizures have faded but not gone away.  They show up now and again with much less intensity.  Well, for him.  Not for us.

It used to be that a seizure knocked him out for a good 24 hours.  He would sleep and snore or at least breathe heavily until a groggy reentry into our world.  ‘Twas up to us to stay alert and watch over him.

Last night he was here for dinner and a small seizure broke through.  He knew it was coming; he knelt on a big beanbag chair in our front room and hugged the dog, protecting himself from the risk of a fall.  (Confused the heck out of the dog, though, as our son seldom interacts with the pets).

We thought, Wow, that’s sweet!  He’s hugging the dog… Then we noticed his forearms were rigid and vibrating.

It ended quickly.  We rolled him on his side on the beanbag chair but he was up and talking in a few minutes.  He went on to have full dinner and a pleasant evening amusing himself and deflecting our efforts to engage him in anything that seems like work (that’s normal – a sign that he’s fine).

Today he was all smiles, had a big breakfast and is off to his day program.

We, in contrast, continue to recover.  Neither of us slept well, as we hovered on the edge of sleep listening for sounds of another seizure.  I took a sick day from work to recover.

It is good that he’s moved on to his group home, because we are so absolutely aging out as caregivers.

Today I feel for the folks who care for (and age with) their spouses, who don’t have group homes or agencies to take over the work.  As one said,

They looked at my diet. They looked at my life style, my BMI and they are like “There is no reason for this!” I am almost diabetic and there is nothing to indicate WHY I should be – STRESS!!!!! That is one of the worst things on a body – my body can’t take much more STRESS! Despite the yoga, the chammomile, the meditation, the walking and support -being a caregiver is MONOTOMY PLUS and horribly stressful. There is no cure.

Pardon my language, but…