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.

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)

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?

It’s on

Here’s the latest on our 23 year old son with autism’s transition to a group residence:

Yes, we have a pre-move team meeting next week and a move in date of November 1, per this message from the Case Manager,

Hello Team,

Joey and I would like to invite you to his ISP Pre-move meeting.

Date: Friday, September 22nd, 2017
Time: 3:30pm
Location: XXXXX Conference Room 3

The purpose of this meeting is to discuss supports Joey will need during his transition to the XXXXX house.

Melissa (mom) is working with Joey on feeling more comfortable with his new computer, which will move with him. He hates change so this was a heck of a time for his old desktop to go kaput.

His most recent antic was to unplug the new laptop, take it off the desk and plop it by its purchase box to say, “Send it back.”

Melissa coached him on being more at home with it, and they had a good discussion one recent morning before his bus arrived and a good hands on lesson last night.

I’m off today and we are planning to go to a sports bar that Joey likes because it is roomy and has great burgers.

Which gave Melissa leverage when he didn’t want his computer lesson. All she had to say was “Working for cheeseburgers.” He complied.

It’s on. The computer is on. The move is on.

Meanwhile the dog did some neurotic paw gnawing last night, opened a wound, and thus cancelled her scheduled bath and grooming.

That’s care giving. Deal with one issue, and the next one comes up from somewhere, somehow.

Don’t Call Us

Our publisher’s site features a bit from our book today.

If you are grappling with frustration, especially if it’s born of perfectionism and the constant setbacks of care giving, you might find this little selection useful.

pathetic-7If our efforts to raise houseplants have been hit and miss, imagine some of the misadventures of raising a son with autism. Caregiving provides instant and constant experiences of inadequacy. Just as we’ve tried various strategies to keep the plants growing, we’ve sought out an array of therapies, settings, medications, specialists, diets and more to bring out the best in Joey’s life. And even with all that help, there are plenty of withered efforts to report.

It’s not all gloom and doom.  Some of the spiritual uplift (we hope) of the book comes in as well.

Hoping you have some good growth and blooming amid all your fails and weeds today.

A dish best served with a smiley-face flower

The news is that agency staffing issues will delay our son with autism’s move to a group home (which seemed imminent about ten minutes ago) until mid-October.

Meanwhile, he’s descended upon us with increased nagging and bargaining for his Christmas list (yes, he starts early).  Mom and Dad are both on the ragged edge right now after bouts of illness and long work hours, so the din of his demands is a mental and emotional pummeling.

Yesterday we began to dish up a big ol’ plate of vengeance.  He came home from his day program with this very sweet guide to respectful communications:

20170824_173707THINK Before You Speak

T – is it True?

H – is it Helpful?

I – is it Important?

N – is it Necessary?

K – is it Kind?

BTW we stipulate that this is sound advice, not just for empathy-impaired people with autism but also for married couples, workplace relationships, social media, etc. etc. etc.  The world could be a much better place – Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. (Ephesians 4:29, The New Testament)

And yes, that’s a rack of his daily meds at the bottom of the picture.  I’m so tired that I gave up on the photo cropping function and I don’t much care.

So we used this against him with great delight,

Joey:  Be a good boy there will be presents?

Hateful parents:  Joey, is it NECESSARY to talk about presents today?

Joey:  When it’s winter there will be presents.

Atrocious parents:  Joey, is it HELPFUL to talk about this before the snow comes?

Joey:  When the snow comes there will be presents.

Should-be-arrested-and-executed-parents:  Joey, is it KIND to keep talking about presents?

Hey, you find respite where you can get it.  That’s care giving.  And it makes even a smiley faced flower stink some days.


Killed by life

The idea of grieving the living isn’t new to me.  A grief counselor opened it up at an autism conference I attended years ago.  There are crossovers between disability and death – dreams are lost, so are familiar comforts and joys.

Today I bumped into a good article on this topic, from the American Academy of Bereavement.  In a 2015 piece entitled Unconventional Grief: Grieving Someone Alive, AAB shares good insight,

jesus-weptThis form of grief, just like grieving someone who is deceased, does not change the level of attachment to the person. Simply, this person is no longer acting how they were before and have had a dramatic shift in personality… Unlike when someone dies, you are unlikely to experience positive emotions while grieving someone alive. When someone passes, you are surrounded by the comfort of their loved ones and are often able to look at the joy of their life. This rarely happens with unconventional or ambiguous grief. Just like when someone dies, you are likely to be overcome with sadness. However, the reminder of your sadness is constant…

The article focuses on sudden change in an adult, such as drug addiction or the onset of mental illness.  For caregivers of children with developmental disabilities, the loss isn’t so much who the person used to be, but who you dreamed of them becoming.  There’s grief either way.

Read the whole thing.  There are some positive suggestions for the grieving caregiver, including this one which has been so true of living with our son’s autism,

Open yourself up to change. One of the hardest parts of grieving someone alive is that you are forced to accept a changed relationship that you do not want. It may be difficult for you to look on a loved one in a different life, but you may be able to experience a rewarding relationship with them in new ways than before. Focusing on finding joy in your new relationship will help keep your mental state positive rather than gloomy.

Finding joy in Joey-as-Joey, rather than as the Joey of our daydreams, has been an essential care giving tool and its own reward.

And Jesus opened his mouth and taught them, saying:  “Blessed are the poor in spirit, for theirs is the kingdom of heaven.  Blessed are those who mourn, for they shall be comforted.”  (Matthew 5:2-4)


What’s left

We are almost sitcom laugh track worth ’round here today.

Joey, our 23 year old with autism, has a nasty cough and is home in a NyQuil haze.  He’s intoning Disney movie lines in a voice that sounds like the audio of a slow motion replay.

Melissa (mom/caregiver) is suffering from a double shot – one shot of staying up all night to care for Joey and the other a shot of recurring pain from a chronic illness.  She’s closed her eyes for a few minutes (btw I think she’s pretty when she sleeps but that’s just editorializing and so I’ll move on).

Tyrion Aftermath-of-the-attack

Tyrion Lannister visits our living room today.  From here.

I (Tim – dad/caregiver) am sittin’ here typing this while my eyes keep closing and head drops on the verge of sleep.  I have the day off but I’m sleep deprived from some kind of phantom leg pain (possible arthritis although disc problem is another one the doctor threw in to consider).

We are all beat up in one way or another, but not by one another.  If anything, there’s a tenderness in the house that is surprising given how cranky pain can make any one of us.

When all else fails (and hey, what doesn’t when you’re a caregiver?), your kindness remains a gift to those in your care.  On days when all of you are hurting, you find out that everyone in the household is a care giver and a recipient of care at the same time.

Letting another’s head rest on your shoulder is a successful intervention, “How are you?” is deep communication and “Sit down, I’ll get that for you” is heroic service.

Sometimes what’s left is you, and you’re plenty.

I sent a prayer request to a friend in the midst of our family sick day, and what he sent back says it pretty well,

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (2 Corinthians 1:3-5)