Shared by the Autism Society of Minnesota.
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.
We are getting our handful of gorgeous spring days here in Sioux Falls. Soon humid heat will take over and we will wilt while the corn and weeds leap up to embrace the sun.
Last night we were guests at an outdoor wedding rehearsal. Our son with autism enjoyed being outside in the pleasant weather. The site had a swing set and that’s a gross motor activity that calms him.
More than that, the couple’s extended family includes a gaggle of boys around whom Joey is comfortable, in no small part because they are so friendly toward him but also understand that his reactions to them will be…uh…different.
I took this picture last night. It looks like Joey is isolated in stereotypical autism.
But notice the slight turn of his head. From his place of shady comfort on the soft grass, he’s enjoying a social moment. He’s connected to the boys who are throwing and kicking various balls around the field to his right.
Although working to establish social connection and interaction with people with autism is vital, so is a gentle touch that finds their comfort zone. For Joey, that’s often just on the edge of things. He smiled on the edge of the dance floor at his brother’s wedding reception, for example. He didn’t need to run away, but he didn’t need to dive in either.
His comfort last night – and the fact that others accepted his comfort zone – gave Joey social pleasure on his terms and allowed mom and dad to visit with friends and enjoy social time on ours.
Besides, they had a taco bar with nachos. I mean, that’s a winner, whether or not you’re neurotypical.
That people with autism live on a spectrum was clear from recent conversations at our forums and book signings.
When Melissa and I ask people there about their contact with autism, we hear a diversity of experiences:
- My nephew with autism just finished college
- Our friend’s daughter with autism just got married
- Our grandson with autism wrote a book
- He’s very high functioning but socially awkward
- Nobody invites us to anything because he gets violent
For caregivers, the spectrum creates obvious problems. Therapies that were useful in one situation simply bounce off of another. Support networks are hard to build – yes, misery loves company but finding a common set of experiences and resources is not easy.
In our family, we are blessed that Joey is emotionally connected and affectionate. Many families of people with autism don’t have that and expend sacrificial love with little in return. It is hard for us to imagine their challenge, even though we might have many other common experiences.
Steve Silberman makes some important points as we wind up (did you know it was April?) Autism Awareness Month. So much science is about “root causes” when the daily struggle is about quality of life for people on the spectrum and their caregivers,
…the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by. At the extreme end of the risks they face daily is bullying, abuse, and violence, even in their own homes…
Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults — now, starting today?
There’s no one answer. But there are millions of potential answers in the hearts of many who care for people with autism and those who know and care about our families. Caring people are on a spectrum, too, from kindly neighbors and friends to the folks who form public agencies and organizations to medical and therapeutic professionals…
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?
Just caught a short, brutally honest article from the perspective of caring for a person with dementia or Alzheimer’s.
In Caregivers Are Only Human, Rick Phelps writes,
Everyone loses their temper once in a while. People say things to each other that they don’t mean under far less stressful situations. Caregivers are under an incredible amount of pressure, and they are not immune to letting their emotions get the best of them. Dementia adds yet another challenge to the mix.
There are several comments at the article that are worth reading as well.
In Raising a Child With Autism, I describe an ice storm that clobbered our town a few years ago. The aftermath of that mess serves as an image for caregiver breakdown,
Sometimes physically, but more often emotionally, caregivers sag like ice-burdened trees. We wonder if our groaning means we’re bending with the effort or if it’s the prelude to falling down.
All relationships – not just care giving situations – can take us to our limits and show us at our worst. As author Anne Kennedy reminds us with a recurring chapter heading in her book for “angry or worn out people,” You Still Can’t Do It.
Which is why care giving or just plain ol’ family life can be the door to discovering the unearned, undeserved favor of a loving and very patient God.
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.
Today is “Siblings’ Day” when one should appreciate brothers and sisters.
The brothers and sisters of a child with special needs are too easily overlooked. It is easy to appreciate how they “help” with care giving but overlook their unique needs.
So important to honor the dignity of those in our care, even if that presents difficulties all around.
And I’m learning a lot.
And honestly, I’m learning a lot about God’s love for us.
We’ve reached the stage in my mom’s recovery where…there’s a frustration within her about how things aren’t back to normal. And a gripping desperation for autonomy.
And I’m going to be really honest, being in my position, as her grown daughter, having come home to be her “sidekick” as I call it – there’s a really delicate balance of how much help is too much help. I want to assist her so that life runs smoothly, but I don’t want her to feel like a child or that I’m belitting her or discrediting her capabilities or contributions. And I’m finding…
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