Medical Meet & Greet

I need you to soothe my head
Turn my blue heart to red
(the late Robert Palmer. More later)

Our allies in care giving are precious. The folks who coordinate and provide services to our son with autism (Allies! Yay!) were quite helpful with recommendations for a new primary physician (Allies!  Yay!) to see our guy. I want to distill some of that experience in ways that I hope will be useful.

  • Let the person in your care help direct the search.  Note his/her day to day preferences.  Is your loved one more comfortable with men or women?  Younger or older adults?  Will the distance to the doctor matter – how does the person in your care tolerate travel?  Any and all subjective impressions can help you seek out the right doctor.
  • Know your needs.  We wanted a younger doctor who with potential to take care of our son for years to come.  We wanted a practice where every appointment would be with that actual doctor, not a Physician’s Assistant. (That’s not a knock on PAs, it’s just that our son does better with familiar people rather than serial strangers).
  • Ask around.  We do it all the time for all kinds of goods and services, so ask for recommendations.  We made an appointment to meet a particular doctor based on recommendations from professional staff we trust.  Friends who are caregivers can give you good insights from their experiences, too.  (You can tell I’m an aging caregiver.  I prefer old school “human intelligence” gathering to online stuff like Yelp.  I want to know the source of a review or recommendation, and I’ve had professional friends burned by crummy reviews made up by crummy people.)
  • Schedule a meet & greet.  Start building a relationship before there’s an emergency or acute problem.  We made an appointment for our son just to meet the new doctor.  I don’t want to be flippant about this.  I realize that for some of you, insurance issues might inhibit you from making appointments of this sort, especially if you are going to check out more than one doctor.  Our son’s disability coverage made this doable for us.
  • Ask questions and share info.  Don’t consider any question rude or stupid, or any anecdote about the person in your care to be trivial.  My wife was clear about our son’s resistance, up to and including violence, to short tempered people or while in a post-seizure state, and she asked the doctor about his ability to remain calm and patient.
  • Observe.  The person in your care needs to be at the meet and greet.  You will sense dynamics with the service provider right away.  The new doctor did the normal stethoscope thingy on our son’s back and chest.  Our son pushed the stethoscope away – but with a big smile.  That is our son’s way of bonding.  He goofs on people he likes.  He wasn’t pushing it away in discomfort or anger, but in order to establish a kind of play time with the doctor.  This was a good sign.

I hope some of this is helpful.  There’s the saying about “being your own advocate” when interacting with the medical world.  Caregivers need to practice that for those in our care as well.

OK, I said I’d get back to Robert Palmer. Here’s your dose of 70s music:

Father’s Day is coming…

And our book would be a great gift for any care giving dads you know!

book-cover

 

Also, we could use your help with reviews that help others take a look.  If you have the book, please go to the link and post a review on Amazon.com.

One caution: if you didn’t buy it on Amazon, they get huffy about posting your review, unless you include something specific like, “I bought this at a local bookstore,” “I received this as a gift,” etc.

Thanks in advance! Hoping to pump up to 30 reviews soon.

The waiting place.

Today we had a good Individualized Service Plan (ISP) meeting with some of the team that manage our son’s adult day program, and with whom he is wait-listed for residential placement.

He’s in a priority position for placement in a well-staffed setting because of his seizure disorder.

But the waiting goes on.  As noted in the meeting minutes,

⦁ Mom stated that during Joey’s seizures she cannot move Joey or heavy objects out of Joey’s way to ensure his safety due to her own health problems.
⦁ [Staff] also mentioned that currently due to the staff shortage, this may hinder immediate placement for Joey simply because there is not enough staff to safely care for Joey’s needs in the residential setting. The team understood this and agreed to it.

Staffing is the issue.  Funding for staffing is one dimension; so is finding people who want to be caregivers in a special needs environment.  It’s not a criticism of any person or program to admit that the folks who can do the job well and stick with it over time can be hard to find.

So the wait continues into another year.  It’s ironic because there’s no real resistance by any party – everybody involved wants a good placement for Joey.

As Dr. Seuss wrote,

Waiting place

From the linked page.

Waiting for a train to go or a bus to come,
or a plane to go or the mail to come,
or the rain to go or the phone to ring,
or the snow to snow or waiting around for a Yes or No
or waiting for their hair to grow.

Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night

or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.

Everyone is just waiting.

You know, I’m typing this while waiting for his bus to bring him home.  And he’s waiting for an expected movie to be delivered and will be asking about it again.

The staff shared sad stories of special needs families unable to moved to a long desired retirement state or with a job opportunity because the wait lists in the new state are too intimidating.  There are cases of parents in their 80s who still have a special needs dependent at home, and it ain’t because they want it that way.

Everyone is just waiting.

What day is it?

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.

Have you seen this man?

Soooooooo…

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.

Something changed.

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.”

5118Here’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:

 

 

Mother’s Day on the Horizon

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…

donna reedAnd 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.

On the spectrum

prism

Lifted here

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…

…to patient strangers who take the time to be kind in the face of confusing and even ugly situations.

Wondering about the void

Lake Minnetonka

Looking out from the club’s dinning room onto Lake Minnetonka

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.

Daves dad and joeAs 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. Daves mom and joe The house might have been uncomfortably quiet as we unpacked a few bags and…

…and what?

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?

Isolation

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,

2012-12-22_09-13-56_966When 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.

Not Fabio but he’ll do

FlowersStorm_avoncovers_first_web-200x327

After all my work to get in shape, this cover was rejected.  Dang, wish I’d a thunk up that title, though!

The cover design credit for Raising a Child with Autism goes to Elaina Lee, who worked with our publisher on the concept.

Our initial suggestion was that the cover be more cartoonish and humorous – maybe a confused guy holding a leaky hose over a withered plant.  Our working title was Blooming Idiots, intended to reflect the on-the-job, trial and error (lots of error) learning  that comes through care giving.

But our publisher had a wise insight as release date drew near: Can you imagine a Facebook status or tweet something like, “Just read a #book about #autism called Blooming Idiots” ? People are going to think you wrote a book that calls people with autism idiots.

Darn it, we liked that title.  But the publisher was spot on.  Sampling the title around to potential readers indicated that it provoked a negative reaction, as if we were using the R word.

So, we tried to go artsy and suggested stuff like Our Family Garden.  But that made it sound like a book about, well, gardening.

Finally, the publisher decided to go with a straightforward approach, and Raising a Child With Autism went on the cover.

That didn’t lend itself to our original cartoon concept, so the cover art team went with a sweet image of weathered, older hands and tender toddler hands holding some earth with a sprouting plant.

We had problems with it.   One was that it was too gentle.  Our hands and Joey’s hands didn’t always work cooperatively.  Care giving verged on combat much of the time.  Plus part of our story is how Melissa and I labored together as a couple, and the cover concept featured just old guy hands and no mommy presence.  The artists went back and tried to capture that, but the result was too busy and would have cluttered the cover.

book-coverSo Elaina Lee creatively and rightly shifted the focus to the child, and that’s the cover you see.  No, that’s not Joey.  He would never wear a hat because of his sensory issues.  He is seldom that still and focused.  And as we share in at least one chapter of the book, he can be pretty hard on plants.

But he does smile, he does delight in simple things and our reward as care givers comes through those kinds of realities.  So there’s a sweetness in the cover that rightly draws the caregivers toward the person in their care, and the hope and joy found in new life blooming.

Interested in your thoughts on the cover.  What does it say to you?   And how would you symbolize your experience of care giving?