A Second Opinion!

Last week I shared about our medical meet & greet with a new doctor for our son with autism.

I mentioned sending the piece to some doctor friends, to get feedback. They’re busy folk, so the responses will take awhile.

Here’s the first, from an Oncologist in South Carolina. He provides a reality check about our hope that a younger doctor will be available to our son over years to come,

All good advice but young physicians are more likely to be employed by hospital systems or large groups and are much more mobile these days. Finding a young physician is no guarantee that he/she will stick around for years in the same position. Also insurance networks change and force you to change doctors.

In other words, as with everything else in care giving, you have to be ready for some roller coaster riding.

I asked a follow-up: Is there a question you wish new patients would ask you but never do?

His reply,

I rarely have a new patient ask me if I would pray with/for them. I wish that would happen more often. When a new patient shares their faith with me, I am more likely to ask them if I can share prayer with them.

That’s an eye opener, isn’t it? So often, we seek a doctor as we would an auto mechanic. But human beings, including those with special needs, are more than material parts to be fixed. We are much more than that, fearfully and wonderfully made, to quote the Psalms.

I’m hoping to get some input from this guy, too,

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:

Worthless and weak

I whined about Mother Nature last night, so I guess I can do the same about God the Father this morning.

Care givers have ample experience with unanswered prayer. Prayer that the diagnosis be wrong; prayer that the condition go away; prayer for resources that don’t come; prayer to “do it right” and fix everything that needs fixin’.

OK, sometimes the prayers are answered. But the great mystery is that so much of what’s good, true and beautiful comes when we are rebuffed,

Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. 2 Corinthians 12:8-10, NLT

So up and at another day, friends. Let’s affirm the reality together, and let the power flow…

No respite, no completion?

Most of what we blog here is about the current stresses and strains of care giving.

This morning I blundered into an article that shows how it can clobber our future.

The sandwich generation — those who have children and at least one living parent — is having a hard time saving for retirement because they are spending a good percentage of their money taking care of family members.

The steady flow of emergencies (they’re often the normal state of things) generated by care giving can lead to job loss or change and the temptation to cash out retirement savings for quick cash,

As of May 22, approximately $26.3 billion in total savings has been cashed out of the retirement system this year, according to the National Retirement Savings Cash-Out Clock. If nothing is done to stem the outflow, this cash-out “leakage” of assets from the retirement system will reach $68 billion by year-end.

This is a major financial health crisis affecting millions of Americans — and industry research indicates that younger workers in the lowest income brackets, as well as women and minorities, are at the highest risk of cashing out. Confronting this crisis requires a concerted, unified effort by plan sponsors and record-keepers to create conditions that facilitate seamless plan-to-plan asset portability for all participants.

20170601_052435

Sure, piggy banks are traditional, but who’s gonna rob a sharky bank?

The article offers some good suggestions, both for caregivers and for their employers. Go have a look – it’s not all gloom and doom but it calls for some work.

And ain’t that just what care giving is all about?

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.

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.

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?