Advocacy and Affirmation

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.

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.

A way to pray WITH differently abled people

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
  • Audio

Here’s a screen shot from the Makaton version of Morning Prayer,

Makaton 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.

“I need help, please.”

I need help, please was a bit of expressive language that some good teacher or therapist helped our son with autism to use years ago.

For a person like our son, navigating an array of impairments like fine motor and personal care skills, the request is vital for opening a bottle of juice or getting to the bathroom on time.  (Of course he also learned to use it to enlist mom and dad for remedial action; I need help, please could signal a wardrobe change or a bathroom cleanup.)

It’s a sweet phrase in our family life.  It’s entered that volume of cute things the kids used to say, so my wife and I might raise our voice to a childlike tenor and say it if we can’t  find some item around the house.

But it came to mind in a more serious context this week when I asked a clergy friend about his Easter service at a residential care facility.

He shrugged and said, Well, there aren’t that many there to attend because they don’t have enough staff to house the population they used to.

help

From here.  They need help, too.

I need help, please.

People with special needs need family caregivers.

Family caregivers need professional allies in public and private agencies.

Public and private agencies need good human and financial resources to support individual and family needs.

The need for help is broad, but energy, money, time, staff, space, love and other resources can be in short supply; either hard to find or quickly exhausted and slow to replenish.

It’s a tough and perennial problem, even for the ultimate caregiver,

And Jesus said to them, “The harvest is plentiful, but the laborers are few. Therefore pray earnestly to the Lord of the harvest to send out laborers into his harvest.”  (Luke 10:2)

A different kind of death

The days after parents hear their child has a disability or special need can be difficult days… Most parents go through a mourning process. The expectations and dreams they may have had for their child die and new ones must take root.  (Sandra Peoples)

003Easter is about an empty tomb.  The expectation that “It’s all over, all is lost” gives way to new life so amazing that, at first, it’s beyond words,

And they went out and fled from the tomb, for trembling and astonishment had seized them, and they said nothing to anyone, for they were afraid.  (Mark 16:8)

May the surprise of Easter give you new hope – new LIFE – in place of whatever you’ve had to give up.  Don’t worry if you can’t hang words on it right away.  Just live it and the One who gives it will help you understand.

Silver Roses

An excerpt from our book showed up on our Publisher’s page today.  Hope it helps you get off of your own back.

One year, my wife and I planted roses all around our backyard. If we knew what we were doing, we would tell you that the flowers were called Lady Wilhelmina Sunburst Spectaculars or some such name. The reality is we went to the nursery and said things like, “Oh, let’s get some of those silver ones.”

Sure, we had red roses and yellow roses, but we were really excited by the bush that would give us silver roses. Our friends would stare and sputter, “Wow, silver roses. Never seen those.”

We planted the silver rose bush in a prominent angle of our fence line. It would be the eye-catching star of the backyard. We followed the nursery’s instructions about how deep to dig, how much to water, and whether it liked red or white wine with meals.

Our dog at the time was a burly malamute mix named Rocky. Evidently, he shared our interest in silver roses. We came home one afternoon to find Rocky lying on the grass, gnawing on the dug-up silver rose bush. After much arm-flapping and loud shouts of, “Oh no!” and “Bad dog!” we replanted the bush. Rocky was a good dog and left it alone. A few weeks later, we had our silver roses. That rose bush didn’t pout because a couple of beginning gardeners forgot to protect it from their dog. It just went back to making silver roses.

Our son Joey endured much because his caregivers were medical amateurs. We never spotted warning signs before a seizure caused him to bang his head on a TV stand, making him bleed profusely. He couldn’t tell us that a stomach bug had him dehydrated, and all we could do was watch the emergency room nurses give him an IV to re-inflate him like a tire.

But after incidents like those, he just took up wherever he left off. Our expertise—or lack thereof—didn’t bother him. He went back to his daily routines and loved us just the same. Joey is not what we made him or failed to make him. He’s always carried strengths of his own that we can admire as precious gifts from God.

We are part of a culture that takes responsibility for too much and assumes that our every word, deed, or thought will have a life-altering impact. Caregivers take that warped thinking to another level since we are in constant interaction with people who have special needs, and we assume that we will do them more harm by our perceived failures.

“For we are to God the pleasing aroma of Christ among those who are being saved and those who are perishing. To the one we are an aroma that brings death; to the other, an aroma that brings life. And who is equal to such a task?” (2 Corinthians 2:15-16 NIV).

We are who we are. Others are who they are, too. Our impact on them is dictated as much by their own inner workings as by our intention and skill.

So let’s drop fear of failure from the one hand and fantasy futures from the other and concentrate on taking hold of what is true in the relationships entrusted to us by God in the here and now. Those placed in our care have special needs we can meet, but they are unique people and not just extensions of our lives.

Silver roses are not our creations; they are the beautiful flowers of tough plants.