Sink your teeth into this

A dental hygienist and care giver to a son with autism did a bit of field research on what could help make a visit to the dentist a success for the child and family.

She found five factors, with communication central to the whole effort.  She visualized it this way:

Autism dental

From the linked article.

Note the importance of Parent carer confidence.  There’s the saying that you should be your own advocate when it comes to your medical care.  Caregivers have to advocate for those who rely on our help.  In the case of dental visits, the author of the study found that

Parents expressed a lack of confidence in approaching the dentist when issues arose. They often assumed that the dentist’s education had provided enough training to understand and support individuals who struggled attending dental examinations. For those parents confident enough to ask for minor changes to meet their child’s individual needs, they reported that these requests were often met with reluctance. Therefore, despite their best efforts, dental visits were largely unsuccessful.
Dental teams that took time to respond flexibly to parental requests for support had more positive experiences. Check-ups were also positive when the whole dental team became involved in the care of the child. This was demonstrated by one dental team who discovered a boy’s love for washing machines. There was a washing machine at the practice so the receptionists would take him to see it if the dentist was running late, or after his check-up.
Helpful strategies included providing information on what to expect before a check-up and making thorough notes so parents did not have to repeat themselves at every appointment. This continuity before and after a check-up was really valued by participating families.
When we express the likes, dislikes and needs of those in our care, we find that we can make allies.  Sure, there are people and places that lack flexibility.  It’s up to us to seek out and open up the practices that are supportive.


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.


Waiting for the other one to drop.

I went over to our son’s group home to pick him up for an overnight here.  Nice evening, got his hair cut, had lots of pizza with friends, the good things in life.

But the big news is what happened when I picked him up.  A staff person at the house said, “Joey, your dad’s here.  Get ready to go.”

Lo and behold, Joey went into his room and came out a moment later HAVING PUT ON HIS OWN SHOES.


Yeah, those black ones on the top of the pile!  They were on his feet!  All by themselves or something!

That’s something we weren’t able to get him to do for 23 years, and in just a few weeks of living with a bit of independence (and housemates who won’t be manipulated into doing it all for him) he can “shoe” himself.

And that’s not all.  He’s using pronouns and grammar more appropriately.

Most of all, he’s smiling a whole lot on these visits.  He’s not disoriented by changes in routine like he used to be.

Next week’s his 24th birthday.  Looking forward to having him over for a celebration.

One week at HIS house

Our son just accomplished his first week in a staffed group home.

He’s here at home our place (yes, we’re trying to call the new house HIS home) to spend the night.  This afternoon and evening will include a haircut by his fave stylist and a pizza party with her family.

The week was a case of “no news is good news” since not hearing from the staff meant no problems.

20171208_135432When I went to pick him up at HIS HOUSE (I must keep practicing this) he was comfortable in HIS greenish recliner ($50 at a used hotel furniture place).  I simply told him that we were going to mom-and-dad’s house for a haircut and pizza with his stylist and her kids.

He came along just fine – although he was a bit confused by my car sitting in HIS driveway.  He turned toward the garage to look for the house van.  He’s already into all of the routines of HIS NEW HOUSE.

Once at our place, he got in a hug from mom.  He was a bit miffed that the Christmas tree is down, but that didn’t last long.

Now he’s taking a short nap in his old bed (with a cushy new blanket he got for Christmas.  Friends provided a second cushy new blanket for HIS house and it even goes with HIS drapes.

This is going well.

Of course there’s the trite line from the old Westerns, It’s quiet.  TOO quiet.

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.

Twinkle twinkle

Family care giving is as full of constellations as our South Dakota night sky.

There are parents caring for kids, of course.  But also kids of all ages caring for parents.  And spouse for spouse, sibling for sibling, friend for friend, ex for ex, neighbor for neighbor…

After my recent musings about our son’s transition to a group home, I got this message from a friend in the region,

I just read your blog post about Joey’s transition and thought I’d share our journey, for perspective. The same time you were moving Joey in, we were moving my parents from the farm to assisted living. This transition took a turn, a few days in, when suddenly it became necessary to move my dad into memory care. So now they are in 2 separate facilities, both a fairly good fit for each of their needs, but they are separated for the first time in 57 years. When Dad resists, it’s especially hard on Mom who put so much effort into keeping him in the home he loved. Sadly, and fortunately, less resistance from him gives Mom respite but means he’s less engaged and more confused. He’s letting go of his connection to his home and eventually to the people he has loved, as must happen. It seems to me that Joey struggling against his separation and transition is a sign of life and love. Having found a good, safe place for him, he is a pretty lucky guy to have more than one place where he is cared for and loved by people who have the stamina to provide what he needs. I still hope to have that coffee on one of my visits, but concerned relatives seem to fill my dance card these last few trips! Peace!

Our friend’s ability to see the good things in all of the trade offs is so important.  Every constellation of care will have these – some seemingly essential things lost but other wonders gained.  Those latter must be illuminated and gazed upon.  They are lamps of meaning and value against what can become, if not resisted, dark and empty feelings of futility and despair.

So twinkle on, whatever your care giving constellation.

Do all things without murmuring and arguing, so that you may be blameless and innocent, children of God without blemish in the midst of a crooked and perverse generation, in which you shine like stars in the world. It is by your holding fast to the word of life that I can boast on the day of Christ that I did not run in vain or labour in vain.  (Philippians 2:14-16)

Empty Nest Weekend #1

Our son with autism spent his first weekend in his new group home.

It was a flurry of activity for mom and dad; writing rent and utility checks, buying furniture (hint – if you have a used hotel furniture place in town, you can save a ton), hanging curtains, buying extra clothes and toiletries…

Joey bed frame LOL

This sign on the bed frame box made me laugh.  It is the mockery of all of our precise planning.  You just KNOW it can’t be true.

Still, the reports back from the staff were more than encouraging.

Joey slept well in the new room.  That’s big.  One reason we’ve been unable to travel much with him is that he can’t sleep in strange places.  He gets up and wanders all night, then inflicts all of the consequences of sleep deprivation on us the next day.

Joey room Thurman

It helped that he’d been to this place on a past respite weekend and that we brought in some familiar furnishings from our house, such as his own blankets, the desk for his laptop, his rolling office chair and the cross you can spot in the middle of this picture –>



Joey chose to socialize rather than isolate.  Even with his computer and a VCR available in his room, he hung out in common areas with the other guys.  That news did our hearts good.  He’s going to have a community there.  He’s not feeling lost.

Of course we spent our first night as empty nesters fretting and pacing and crying.

Nah, actually, we went out for sushi.  And a Sake Bomb.  Proud to say I downed mine faster than a young husband and wife competing with me down the bar.

Caregiving.  It makes you hardcore.

Joey post move Sake Bomb


No trick! This is a treat…

Governor Dennis Daugaard of South Dakota officially proclaimed November as Family Caregivers Month!  Give his official Proclamation a read – that’s you lurking somewhere in the statistics and words of praise.  1

No, you’re not crazy.

Well, maybe you are.  But since care giving puts a whuppin’ on body, heart and mind over time there’s no surprise that our lives reflect the damage.

I’m currently reading Being Mortal but Atul Gawande.  The author is a surgeon who also writes outstanding prose that invites the lay person to look at medical issues and medical professionals to look at the human impact of their work.

Yesterday, I read his description of an adult daughter caring for her father,

Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial… The burdens for today’s caregiver have actually increased from what they would have been a century ago.  Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner.  Last minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home… 

She felt her sanity slipping.

Misery (or is it madness?) loves company, and I was reminded of what I wrote in the intro to Raising A Child With Autism,

Maybe you are an amateur trying to be caregiver, therapist, clinician, advocate, mommy, daddy and everything else to a loved one living with autism. You feel like a lone idiot with a leaky hose when the job needs a landscape company.

So if you’re out there feeling depressed, or enraged, or exhausted, or or or or… just repeat after Dr. Sheldon Cooper:

sheldon not crazy

Flashing before my eyes

Not my life, but my son’s life.  That’s what flashing before my eyes.

Today we have the meeting to set up his move to a group home.  All of the staff will be there, both the folks from his day program and from the house where he will live.

It’s a positive thing, of course, something for which we’ve (my wife and I) waited for a long time.

I can’t speak for her feelings, and I can only guess at our son’s, so I’ll shift to first person here.

I realize that my role in my son’s life is not over, but much of what I can do and shape is.  I’ve formed what I can in his life, second guessed myself to the point of agony, been critiqued and judged plenty from without, as well as encouraged and supported at precious points along the way.

I can look back on…


JOEY Yucaipa


…who Joey was…



Daves mom and joe



…who he’s become…







…and ponder who he’ll be.





Something of me travels with him, of course.  And I pray that it is whatever is true, whatever is honourable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable (Philippians 4:8).  God knows and every day reminds me that there’s plenty of me that needs to be ignored and forgotten, and I can only pray that little of that drags along with Joey.

So a new leg of the journey commences, over territory we’ve not been and over which we’ll have ever diminishing control.  But ain’t that life.

An old priest I knew always included a warning in his message at the baptism of a child.  You (parents) know that you’re handing your child over to God now.  You’re no longer in charge of the outcomes.

As my life flashes before my eyes, and Joey’s plays across my imagination, I’ll trust that warning, and know that all of our lives are in the hands of the One who’s cared for us beyond all deserving.

 They will declare,  “The Lord is just!  He is my rock!  There is no evil in him!”  (Psalm 92:15, NLT)