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.

No. Words.

32t0b5No, 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. 

Given the reality of fake news (uhhh, does that make sense?) and a recent distortion of euthanasia news from the Netherlands,  I wondered if this Indiana story was true.  As far as I’ve been able to discover, it really happened.

From the story,

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)

Voices

Those in our care have values, pleasures and priorities.  As family caregivers, we are often best able to recognize and interpret those to the world should the people in our care have any communication impairments.

But there are many who receive care who are quite able to speak up for their own lives, like this young man,

Seriously, I have a great life!  I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn’t have to jump the fence either time…Surely happiness is worth something?

Sometimes we have to be advocates.  Sometimes we just need to listen, affirm and encourage.

As many Christians around the world observe our Holy Week, we do well to remember that the One we honor and proclaim listens to voices we ignore or shut down,

People were bringing little children to Jesus for him to place his hands on them, but the disciples rebuked them.  When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”  And he took the children in his arms, placed his hands on them and blessed them.  (Mark 10:13-16)

…Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside.  And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!”  And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.”  (Mark 10:46-49)

Jesus walked through our world announcing that no person was inconvenient or unwanted.  He spoke up for the voiceless and heard the cries that others sought to silence.

He still does.