I’m no Mary, he sure ain’t no Jesus…

When Joey was a toddler and we were at camp, the thought flooded my head like perfectly heated steam, while the sun poured into my skin like soft lotion. Some distant, bitter stranger, more like a stick-figure with a disproportionate index finger pointing at me was saying “That is blasphemy, you fool and you will writhe in the pit of Godless Hell.” My conscience made no sense of that brittle, screeching thing.

My thought was that Joey was Jesus and I was Mary. Well, not really. It was more like it felt so perfect, that the love was so pure that it had to be the same love. I thought of my other two children. Did I love them less? I loved them as much, no second thought. Immaculate Conception? Did any reader who barely knows me remain in their chair at that thought? Lastly, Joey had never spoken but one word: “tickle,” and at the time I did not know he would not begin to speak until he was almost five years old. Nothing exceptional about either of us, to the outside world, rather unnoticeable unless misbehaving. 

Misbehaving? I shall not digress much but a doctor has mended a gash in my cornea after one of Joey’s meltdowns. As for me, it took a couple of exceedingly large women walking slowly, diagonally across a mall parking lot, no crosswalk, not looking, got an earful from me and yes, I was sober. To my husband’s chagrin, I was shotgun. 

Back to camp. Joey was 2 years old. He had been diagnosed with severe autism 2 months earlier. Out here in the open, running, clapping or flapping his hands in the fresh-cut grass, he had very few sensory issues. An “older” mother, I was 41.

Now I am almost 62, Joey is 24 and I am thinking perhaps God needed me to love him as deeply as Mary loved Jesus to get through the years of violence and injury he brought, mostly to me because I was physically the weakest, emotionally the most vulnerable, and although autistic, he was smart-enough to know it.

And if that was not enough there were the “outsiders:” every  wise-ass parent who saw a neuro-typical looking child like mine behaving badly and concluded it was my bad parenting, or the parent of another autistic child who had all the answers… I should not have immunized him as I did my other 2, I should have spent tens of thousands of dollars for some amazing camp run by people who looked like the people who used to hang at Haight-Ashbury which would “cure” him. Lastly, the 6-figure paid government employees who knew nothing about education but decided what kind of help my son and other children like him would not receive. Those meetings were tortuous hours.

I still feel the overpowering love that I can only guess Mary felt for Jesus, who was helpless to the world. Of course it is completely different. Of course it is not.


One plan and many question marks

The staff at our son’s new group home are encouraging us to have him there full time instead of just weekends.  People with autism benefit from (heck, generally insist upon) predictable order, and Joey needs greater regularity in the new place.

But for our part, Melissa (mom) had a good insight for keeping him close at this time of the year.  Joey loves Christmas, and to let him spend time in familiar company, decor and activities showed him “that things he loves are not going away.”

He’s having a very merry Christmas.   I can’t remember one more smiley and less moody.  Last night his brother and sister-in-law took him to dinner, and this picture reveals how much that meant to him.  He’s not one to smile for the camera, after all… Joey Tim Carly

Later they went out to visit some old friends and he was not happy to see them go.  He opened the drapes and watched them get into the car and even verbalized feelings about wanting them to come back in.

We get it, this inevitability of change.  But it is going to be some hard going in our hearts in the short term.

below zero


Accenting the emotions is an Arctic cold front sitting on us for the time being.  At first it was just our usual hard winter cold with blue skies and bright sun, but yesterday it went to bleak gray along with… with… well, I’ll let my Chevy do the talking.  I could start a post with “It was a dark and stormy night” and be only a tad melodramatic.

Work is kicking my butt.  We set a sales record in my little department but my body is not what it was and the aches and pains never seem to go away.  I’m not sleeping well stewing about Joey and work and bills and and and and.

But that’s another point in favor of making Joey’s transition happen.  Melissa and I are not getting younger and our skill set and energy for care giving are not going to improve.

The church family from our last place in California is suffering through several members’ deaths in recent months.  These were folks around our age and younger, and two were without warning.   So that’s more pull on our hearts and our minds are grappling with this life’s impermanence and fragility (yes, yes, another point in favor of getting on with Joey’s transition).

Then there’s the coming transition in our marriage.  Don’t even have my heart and head fully wrapped around what empty nest will be like.  How will we be when all the decorations come down and Joey is moved out and the flurry of holiday happenings is over and we’re sitting here staring at each other across years of deferred relationship?

Might as well end this with that question mark, since there are so many things in process, unfinished and unknown swirling through our lives right now.

The Hamper of Love

Our son’s move to a group home is becoming like a wedding, with the exception that our family has someone moving out instead of in.

Like a wedding, the big plans all looked great on paper, but as the day draws near the details multiply like pick-your-favorite-thing-that-overpopulates.

Today was shopping for toiletries and some extra clothes for him to have at the new place.

20171104_160224Here’s the pile at midday.  I was proud of finding some sales and bargains.  I also rented a truck (no, it’s not in the laundry basket) to move furniture next week.

This morning was sweet.  His older brother and his wife were in town en route to a real wedding, and we all went out to breakfast.  Joey sat between them and smiled a lot.  Melissa remarked on how adult he’s become about social settings.  He doesn’t have to sit bookended by mom and dad.  He uses his fork and spoon like a pro (still don’t trust him with knives).  He interacts, in his own way, with those around him – when his orange juice arrived he wanted to use a straw, so he handed one to his sister in law to unwrap for him.  Yeah, he’s never gonna be cool with fine motor skills.

The weird thing is that as his moving day approaches, he’s increasingly fun to be with.  Is that just because we know the day is at hand and we’re relaxing?  Or, does HE know and is he angling for a sympathy extension at our place?

Reading while waiting


Pic from here.

On this end, we’re still waiting on a new meeting date to get our son’s residential placement going.

This morning while waiting for the bus to his day program, I ran into a young woman’s blog piece about living with her brother and his autism.

What she describes gave me a brief shiver of memory.  We endured some of this stuff for years.  Yes, our son has come a long way; no, that doesn’t erase the gut reaction when reading

First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.

And the decades between the young woman and our aging (aged?) selves evaporate as she describes our common worry,

I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?

OK, back to waiting.

Hanging out alone together

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.

20170505_195157I 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.

The overlooked caregivers

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.

Here’s a short video that’s a helpful reminder.



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?


Lifted here.  You might find the article amusing, too.

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.

Beer, bang, blood & BS

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.

Out with… with… I forget

So here comes the obligatory New Year’s post.  Although I think I neglected the compulsory Christmas post so I’ll cram them together.

Joey begins perseverating about Christmas presents – aka movies on VHS – in the summer.  We get mad and try to make him change the subject; Melissa makes him dictate a written list so at least some constructive interaction takes place; our eyes roll back in our heads…

presentsThen Christmas day comes, we wake him up for breakfast and presents, show him his loot ‘neath the tree, and he says…


and goes back to his room.

We eventually prevail upon him to open the gifts, which he does with grumpy histrionics before again retreating to his room without them.

Eventually, over several days, he begins watching his long desired movies and seems happy.

Well, this year we resolved (see that New Year’s hook?) to try a new approach, which was no approach at all.  We simply let him ignore the presents to see where his thought process would take him.  We offered them to him and then left them under the tree and waited.

Our older son and his wife flew in for the holiday, and we exchanged gifts with them a few nights after Christmas.  Joey seemed to get into the second gathering and opened his presents then.

Hypotheses include a) he wanted his brother there, although he did the whole “NO” schtick throughout the years his brother lived at home; b) he doesn’t want Christmas to come to a crashing end but wants to sustain the gift getting pleasure; c) oh, hell, I have no idea.

Here it is New Year’s Eve-day and I’m sitting here yelling at him to turn down the volume on the movies, which he’s enjoying.

I’m not big into resolutions.  But here’s a favorite scene that reminds me to be open to change, to quit pounding my head against autism or any other wall…

May 2017 bring you blessings, especially freedom from old ruts. May you have divine favor upon all that you offer.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come. (2 Corinthians 5:17 ESV)

No Language or Sex; Lotsa Violence

Living with a person with autism can mean very little verbal interaction and a reduction in intimate time and space. It can also open a can of whoop-a** on ya.

When our son Joey was a little guy, he would have violent meltdowns. These could come from frustration because we didn’t understand something he tried to get across to us or anxiety because he couldn’t understand something we tried to communicate to him.

One incident left Melissa with a scratched cornea. I was flogged with a rope dog toy. Another time it took both of us plus our older son to pin Joey to the floor until the fury subsided. He would kick, bite, punch, throw objects – we couldn’t ignore a single appendage if we valued our safety.

I caught this very good video on Twitter. It’s less than four minutes long and worth a viewing. It’s specific to caregivers of people with Alzheimer’s, but describes a hazard faced by many kinds of caregivers:

You have to fight your own nature as well as the person beating on you. You have to stay calm and gentle while under assault. It is a physical ordeal and emotionally exhausting.

It is freaky to face a physical attack by someone you love and are struggling to care for.  The emotional wounds can linger longer and more painfully than the bodily bumps and bruises.