A short and powerful video expressing family care giving. There are many ways to share our stories and help others know what’s going on, and this is a fine example,
No, it’s not hump day, just Tuesday as I’m typing this.
For most folks Wednesday is the celebration of starting downhill toward the weekend.
But for caregivers this can work in reverse. Folks who take care of kids with special needs take our breaks on weekdays when schools and community programs are in session; the weekend provokes anxiety. And the closer it gets the higher the anxiety rises.
People with autism, like our son Joey, like structure and familiarity. Day programs in classrooms or work spaces provide precisely that. The weekend interrupts it. It is no surprise that Joey’s seizures, which are blessedly few and far between these days, tend to break through on the weekend at home. Melissa had to be in-home EMT on Saturday when Joey pitched out of a chair with an intense seizure.
And of course this was a long weekend, what with the Memorial Day holiday to further disorient and agitate both Joey and his caregivers (Melissa and me).
He did, at least, enjoy my grilled hot dogs and brats, of which he ate five. With buns.
Yeah, that hump day thing isn’t as happy for us as it is for most.
Note: I still don’t know why the video refused to embed in the post prior to this one. Well worth watching if you click on the embed code that’s spilled all over the page.
We went to a wedding over the weekend. All three of us – our son with autism included.
There was much in our favor. The couple came from an extended family of friends that our son, Joey, knows and enjoys. The atmosphere was happy earthy rather than formal and uptight. The weather featured a few of the rationed really-nice-days allocated to South Dakota every year. And there was food to be downed.
As I shared earlier, the rehearsal went really well for our whole family. And we were going back to the same place with the same folks for the wedding and reception.
Maybe it was the volume of the music in the reception hall. Maybe it was the bigger crowd of people. Whatever it was, it brought out Joey’s “best.”
Here’s a surveillance photo of the suspect. Notice that the look isn’t very happy. That little bucket was full of chex mix for snacking – he pulled it to himself, spilling some and playing tug-o-war with us as we tried to retrieve it. Calm words about “sharing” failed. Then he ate all the chex out of the mix and left us with just the pretzel bits.
What you might not be able to tell from this pic is that he’s not in a chair. He’s on his knees on the floor. We tried to coax him into a chair but that agitated him.
Then he scooted on his knees out into the middle aisle of the reception hall – just as the wedding party was set to make its entrance.
Joey’s figured out that he’s big enough to physically resist mom, so I had to hunker down on the floor and drag him just enough to clear the aisle until the wedding party made it through.
Then he stood up and started walking around in front of the head table, which of course was when people wanted to be taking pictures of the couple and their gorgeous bridesmaids and groomsmen.
I managed to stay just calm enough to convince Joey that he didn’t have to sit if he went and stood by the windows along the wall.
The long and short of it is that Melissa and I enjoyed our friends’ wedding very much, we all had a nice dinner and drinks (several drinks in reaction to Joey) and then came home and collapsed.
Care giving is a game of home court advantage – you usually wind up losing on the road.
My picture of defiant Joey – actually the whole vibe of trying to handle him – reminded me of this recent movie scene:
Here are a couple of good piece by MOMS of kids (little and grown) with autism:
At The Mighty, check out 15 Things I Hear as the Parent of an Autistic Child – And My Responses.
Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say…
And give a read to Shaunta Grimes’ Coffelicious blog, This is what it looks like to be a Gen-X mom with an Indigo Child who isn’t a child anymore. (Strong language & content).
It’s so tempting to try to browbeat him into sleeping more. (I have no idea why it would work with a 23-year-old man when it didn’t work for a three-year-old baby.) I also find myself wanting to monitor his computer time, restrict him from drinking and unprotected sex, and refuse to let him get his own apartment because I can’t see how he’ll be able to manage paying his own bills.
It’s easy to forget that having autism doesn’t make him less of an adult with his own mind and the God-given right to make his own decisions. And mistakes.
Me? I’ll try to get Joey to help me honor Melissa on Mother’s Day, all the while dealing with the reality that he expects any holiday to mean presents for him.
While Joey spent the weekend in a respite apartment (that’s respite for his caregivers, mind you, he’d rather be home with his own stuff), Melissa and I traveled to a lovely spot in Minnesota as guests of a church with a big heart for service to others.
We spoke as a couple at a forum for Autism Awareness Month. It was well attended by folks caring for loved ones with autism and others who have friends or extended family members living with or caring for special needs.
A number of great questions and comments came up. I want to return to some of those here on the blog. They’ll be in no particular order except as to when they pop back into my head.
Melissa brought up what we call “the void.” Taking care of our son Joey for the last 23 years has blessed, warped, changed or any-number-of-other-verbed every aspect of our family life, our marriage included.
I hear similar thoughts from caregivers in other situations, such as those caring for a disabled or chronically ill spouse, or grown kids caring for parents with dementia or Alzheimer’s. Care giving takes over everything. Some relational bonding is put on hold or evaporates, while the care giving routines become a kind of alternative glue holding people together.
Then the daily care giving goes away. The person under care dies or is institutionalized. In our case, Joey is on the waiting list for a group home opening. Our dawn to dark (and sometimes in the dark) duties will move out with him. Melissa and I will be staring at each other with a lot of “Now what?” space in between us.
As important and immediately refreshing as we found our trip, we were urgent about getting things back to “normal” and we picked up Joey and whisked him to one of his favorite restaurants. The house might have been uncomfortably quiet as we unpacked a few bags and…
This is ground we’ve not been over, but can see in the not-too-far distance. We are trying to regenerate some of our couple time together, and keep up friendships, and envision things we want to do when we’re free to get on with them.
But we’re also interested in the experiences of those who’ve been over the territory, especially as couples. Did you experience the void? What did it do to your relationship? How did you (plural you, y’all) come out on the other side? Or did you?
The first book signing for Raising a Child With Autism is history, but this isn’t about the book. It is about the people who stopped to talk at the display table and others who’ve been in touch via the internet. My prayer list keeps growing with their names and needs.
One man took a break from his job down the street from the bookstore to come in and describe his family’s unique challenges. They care for a son with autism.
We noticed that people stopped inviting us to stuff. I think they’re afraid of our kid. My wife is at home alone with him more and more. She’s really feeling isolated.
All kinds of care givers suffer in similar situations. People don’t invite you out or you find it too much of a hassle to go. Competent babysitters or respite providers are hard to find. The person in your care is agitated if you go out on your own, but resists going along when invited.
Many Christians will hear a familiar Bible lesson on an upcoming Sunday in Easter season. It begins with people in isolation,
When it was evening on that day, the first day of the week, and the doors of the house where the disciples had met were locked for fear…
But the locked door is as powerless against what happens next as, well, our bedroom door when our son Joseph wants to bust in about something.
Although the doors were shut, Jesus came and stood among them and said, “Peace be with you.”
We weren’t able to attend an Easter service. I had to work and Melissa had to – did you guess? – be home with Joe. Yet Easter isn’t less Easter to us, because of the one who burst the isolation of his tomb and, by his Spirit, reaches into the isolation that afflicts the human race.
There’s no easy set of “steps” to make this happen, much as I’d like to bottle and sell such a formula. But I suppose it begins like most efforts to end isolation, with a conversation,
And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”
We are blessed this Easter. Although we couldn’t be in church, we will soon have dinner with friends who love Joey and welcome him into their home.
We are grateful to all who read what we share, who leave messages and otherwise communicate with us. You have been part of God’s response when we’ve asked, sought and knocked – you help deliver us from isolation.
May God’s peace be always with you.
Award winning author Norma Gail asked me some probing questions in an interview shared on her blog.
Here’s a bit of it, with some key quotes available for Tweets embedded by the host,
NORMA GAIL: Autism affects 1-68 children in America. That’s more common than most people probably realize. What are the most basic things you wish people knew about Autism and the families it affects?
SOMETIMES CARE GIVING STINKS: I think I speak for many families of children with autism who want to scream, “NO, IT’S NOT DUE TO BAD PARENTING.” It’s a neurological disorder, most likely genetic rather than environmental in origin (although people debate that with some ferocity). One of the hardest things is that kids with autism are impaired socially and so their parents can invest sacrificial work with little to no emotional connection in response. We were spared that – Joey is very connected emotionally, albeit in some quirky ways.
There is no “cure” for autism or any one therapy that is useful in all cases. Families hope for a “silver bullet” that will solve things, and this can leave us open to bad advice, blaming or other traps.
Parents deal with feelings similar to grieving a death. Various hopes and dreams we hold out for a typical child often have to be given up for a child with autism. Some kids on the autism spectrum grow up to play sports, perform in the arts, excel in academics or vocational skill, get married and all kinds of other things we think of as making for a “good life.” But many will never experience some or all of those things. They have other pleasures – parents have to learn to love those.
Siblings can feel ignored due to all the effort and attention put into caring for the child with autism. The whole family is impacted.
Allies mean a great deal. Educators, medical people, community programs, understanding churches (not always easy to find), and just plain caring folks make life better. There’s a neighbor of ours who routinely keeps going down our sidewalk when clearing his of snow – the time and effort he saves us is a precious gift.
NG: What are some of the greatest challenges faced by parenting a child with a disability?
SCGS: As the book points out, family caregivers – and this applies in situations beyond Autism, such as Alzheimer’s, spousal disability and many other conditions – are trying to fulfill roles beyond the knowledge, skill, energy, patience and finances of a typical individual or family. We get stretched beyond our limits and, really, beyond any realistic expectation of becoming “good at it.”
In our case, we had to deal with Joey’s “meltdowns.” Kids with autism become frustrated when they can’t understand or be understood by others, and this can lead to a violent outburst. It’s not the same as a tantrum, in which a kid wants a toy. It is an all consuming surge of energy in an effort to connect with a world that seems out of touch. It is heartbreaking to try and contain a beloved child who is putting you in serious danger – Joey would punch, kick, bite and throw objects at us.
There were several years where we didn’t think that Joey or any of us would ever sleep. The stuff that makes you laugh after the years of raising a baby keeps going when autism is in play. I sometimes tell people, “Imagine having a combination of newborn and toddler for a couple of decades.”
Parents share war stories of dealing with “the system.” Some school districts are downright hostile to special needs kids, considering them a financial drain on services for “normal” kids. Then there are the insurance issues, efforts to see specialists, quests for specialized therapies – it is exhausting and sometimes fruitless.
Check out the interview. Leave a comment there on Norma Gail’s blog and you might win a signed copy of Raising a Child With Autism.
I couldn’t resist having fun with the sign on this shopping cart. I Instagramed (is that the verb?) it, with a caption about how I wasn’t getting any children anyway since I was fasting for Ash Wednesday.
Humor is an important ally to the caregiver. It is a tension cutter. Much of our humor is dark, but then so are the situations that generate it.
In recent months it’s been harder for Melissa and me to laugh at some of the quirks of Joey’s autism. His video watching becomes intrusive noise; I don’t think he’s turned up the volume but our annoyed ears seem to think he has.
The chores of his daily routines – chores we do for him, let me be clear, not chores he does – are not a terrible effort yet they are numbing. Not demanding physically, but draining psychically.
His non-cooperative behaviors get under our skin more.
We have more wistful conversations about being empty nest, about having the house and the time to ourselves for the first time in forever. And so we wait for Joey’s group home placement, still loving him and wanting all to be well in his life yet feeling the limits of our own aging and of the two decades dominated by autism.
And that’s followed by a mist of fear that we’ll be staring at each other across a great emptiness wondering, OK, now what do we do?
Speaking of aging, I guess that entitles me to repeat stuff I’ve probably said before but can’t remember if I did. So, let me say (again) that one way to describe raising a child with autism is to ask parents of typical kids to remember the sleepless nights and all the stuff that went with a new baby – the stuff that in hindsight becomes a source of humorous memories. Now imagine that much of that stuff never developed into self sufficient adulthood and you kept doing it for five years, then ten, then twenty. Not so funny anymore.
Remember that you are dust, and to dust you shall return, is what we say on Ash Wednesday. Indeed, care giving exposes every pathetic evidence of sin and fatal separation from God – every bit of selfishness, the limits of love, the capacity for self pity and resentment, the instinct to blame… all of the ungodly feelings, thoughts and emotions in service of the world, the flesh and the devil.
If we are fortunate, it becomes the great weakness that throws us upon the grace of a loving God, who gives us power to live in ways we never imagined,
Three times I appealed to the Lord about this, that it would leave me, but he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong. (2 Corinthians 12:8-10)
Everyone reading this book – indeed, every human being – needs to know that when such a thing happens, we are not alone. Victor Lee Austin, Losing Susan, Brazos Press 2016.
If you are a family care giver, or if you know one, Victor’s book (and it really turns out to be his late wife Susan’s book just as much) can be at once a splash of cold water that wakes you up and a strong arm around you for comfort.
He tells the story of his wife’s long terminal illness and his efforts to care for her with great love and humility in a pure sense of that word, by simply being objective and not forcing any judgments. Some questions are left hanging, and this book gets across how normal and necessary that is. No tidy answers to the big questions, but great insight into family care giving and a gift of compassionate companionship for those who are caregivers.
Just as many combat veterans need others who’ve been in battle to process what’s happened in their lives, care givers will find in Victor and Losing Susan a level of understanding and acceptance that helps process uncomfortable emotions and experiences.
Reading this is a reminder that care giving thrusts orderly souls like Victor’s into chaos, free spirits into stifling routines, thoughtful people into impulsive action, rational people into irrational situations, spontaneous people into detailed planning, extroverts into isolation and introverts into a land of disintegrating boundaries. And what’s worse is that this all involves the loss of the person most a part of us and most able to buffer us in life’s hardships.
As I read this book, I was struck by how much I would like to see couples read it while preparing for marriage. God forbid that they should have to walk the same course as Victor and Susan, but they will walk some part of it. This book, by telling a family story rather than framing a lecture, brings out the deep reality of
In the Name of God, I take you to be my wife (to be my husband), to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, until we are parted by death. This is my solemn vow. (Book of Common Prayer, 1979)
That kind of promise will take us into situations for which we are radically unprepared and, in all honesty, incompetent. As Victor describes so well,
I never had any confidence about how much I should push or encourage her and how much I should step back and just let her be.
I’ve talked to a lot of people who have to care for others whom they love, and we always recognize this point of commonality.
This common lack is why care giving can’t be pulled off all on one’s own. We need companions and, if we can recognize it, we need God’s grace. Losing Susan is a voice for both.
O, God, where to start retelling last night?
Got home from work in the late afternoon with two consecutive days off coming up. We had a fun Chinese pick up dinner; Joey downed his own weight in Lo Mein.
Melissa and I were settling in to binge watch something and I was so relaxed that I had a second beer. Then a third.
Then, a floor shaking bang and noise like the fusion of snoring, opera and a train going by. Joey had a seizure.
It must have been abrupt because he usually senses them coming and gets to a couch. This time he was down on the floor in his closet with his face shoved into the floor. It was hard to get to him and we needed to make sure we could keep his airway open.
I’d just downed that third beer…
Melissa managed to wedge herself in with him, get a hand under his head and get his nose and mouth out of the carpet so he could breathe.
When she got her hand free, it was covered in blood.
As the seizure subsided, Joey began to rouse himself a bit and we were able to get him out of the closet and inspect his head. There was running blood all over his left ear and we couldn’t tell if it was coming from an external cut or from inside of his head.
Melissa said, “We need to take him in,” meaning to the ER as it was evening, and she was right. But I’d had three rapid beers and she was going to have to drive.
So we loaded up, her hair a mess and no makeup (that doesn’t bug me but she hates going out like that), Joey and I in shorts despite the winter temps.
I had the presence of mind to call the ER and let them know we were on the way and what had happened.
OK, OK, I need to back up just a bit so I can tell you about the BS. As soon as we realized that we had to get to the hospital, Melissa had the insight that Joey gets combative after a seizure. He just wants to sleep and doesn’t want to be poked, prodded, asked questions… it is like a man-cold on steroids. He can get violent if pushed, no matter the pushers’ good intentions.
So she showed Joey her bloody hand and said, “Look, Joey, mommy has an owie. I have to go to the doctor. Will you help take mommy to the doctor?”
It worked. She actually turned him into a caregiver, and, although we could see he’d rather do something else (hey, that’s a working definition of care giving, ain’t it?), he wanted to help mommy be OK.
This morning I realize that autism worked in our favor. His older brother, the engineer, would have asked, “Hey, if mom’s injured, how come she has to drive?” No such problem with Joey.
At the ER, Melissa quickly informed the staff of the BS story under which we were operating. It was wonderful – all of them, from the receptionists, to the nurses, to the admitting clerk, to the doctor – adopted the line. “So, what happened to you,” they asked Melissa, “and where are you hurt?”
Meanwhile, they convinced Joey that getting his blood pressure would be helpful to treating his Mom.
They very dramatically cleaned the blood off her hand so Joey could see mom getting fixed, then told him that some of the blood was on him and they needed to clean him up, too.
Thanks be to God, the bloody wound was an external abrasion. No stitches, just some topical disinfectant and a day of rest (today) at home.
And, because of Melissa’s impromptu and epic BS, no combat.
No pics to share. I wasn’t thinking of blog illustrations at the ER.
So here’s one of last night’s empties and some morning coffee. In a mug that Joey painted for me.