You open your email and…

On behalf of the Placement Committee, I would like to offer a tour at [a special needs group home] to Joey Fountain.

I like to write but all of the descriptions of my reaction to this message get trite. You know, my jaw hit the floor, my eyes popped out of my head kind of stuff.

Joey, our son with autism, is 23 now.  We’ve hoped for and dreaded this opportunity for years.  I can’t blog a whole lot on it at the moment because our thoughts and emotions are bouncing off the walls (man, this is getting cheesier by the keyboard stroke).

[Let me throw in one practical suggestion.  If you are a Google user, Google Docs is a great resource.  My wife started a document with our growing list of questions and stuff to get done as we approach the transition meetings and the move itself.  It auto-saves, so you can’t lose stuff by closing it in an emotional haze.  You can use email to invite in others (you know, your spouse and other care giving ally types), so they can open it on their screen and add to it as well.

If you are awake all night stewing about the issue (as are we), you can just add to the document and your allies will be able to see it when they open the document later.  No need to make copies and then more copies as you revise – you can all be online editing together in real time.]

In Raising a Child with Autism, I shared a lovely little vignette about Melissa raising gardenias and then wrote,

Giving away gardenias hardly compares to the “giveaway” in our future.  Joey is on a waiting list to move into a group residence.  It is uncomfortable to think about looking into his bedroom, just down the hall from ours, and seeing an empty space.  Like Melissa’s gardenias, he’s grown in beautiful ways.  And the time is coming to let him go.

That was composed in reflective calm, when the “waiting list” was just a vague background reality, something that wouldn’t really mean anything until…  until a couple of weeks ago when I opened my email and there it was, specific, real and hulking in the foreground of our lives.

I’m sure Melissa and I will share more here as we walk through this together.  Your prayers and encouragement mean a great deal.

For now, here’s a sweet picture of Joey, taken one 4th of July in Sioux Falls.  We know holidays can be a challenge for caregivers – here’s hoping that your family “fireworks” stay far off in the sky.

Smiling Joey

ALLIES. Find ’em.

Just got another kind review of Raising a Child With Autism on Amazon:

This is a book you pick up and don’t want to put it down until you’ve read it all they way through front to back. As a mother of a 22 year old daughter with Down syndrome I could relate on so many different levels. It gave me peace to reaffirm my belief I am not in this experience alone, my Creator is with my daughter and I every step of the way. Highly recommend the book, bought 4 to give to friends/colleagues.

It’s a book for all kinds of family caregivers.  Yes, autism looms large because that loved one in our care is a person (now 23 years old) with autism.  But as the reviewer notes, there’s value in shared insight and encouragement across “conditions.”

Triumph_Allied_Forces

Heck, get a Canadian power trio to help if you can!!!

We need all kinds of allies.  As we say at the top of this blog, Don’t be alone… The person who reviewed this book in one short paragraph notes family, friends and colleagues.  We need to build up those relationships, in person, in print, on the internet, wherever we can.  The support flows both ways, ultimately.

Here’s another call to build supportive bonds for care giving, from an adult child caring for her parents,

As a primary caregiver for my parents and other family members, I’ve found that I need different kinds of assistance. Some people help me with direct, hands-on care — assisting Dad with things like eating, getting out of the house or personal care such as bathing and toileting. But I also need help with hands-off care: dealing with paperwork, grocery shopping, cleaning the house or making phone calls and appointments… 

…When I feel alone as a caregiver, I take an inventory of our team of family and friends who feel like family and realize how much backup I really have. The keys: Don’t be afraid to ask, and think imaginatively about how caregiving can become more of a group effort. You’ll be surprised how many people are willing to help when the job is right for them.

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…

Mother Nature, Queen B_@t_h

Nah, I don’t need to spell out the word that every white kid has adopted to self-identify as something other than every white kid (Is there a mathematical formula to express that?).

Anyway, the view from our back deck last night:

So Ma Nature comes struttin’ through here like a Kardashian in front of a camera.

You know what her histrionics can do to an internet signal? The signal upon which your kid with autism (another of Queen B’s contributions) is depending for a bit of entertainment to relax for the night?

The signal which is interrupted, sending the kid into your room with anxiety rising into rage?

The signal which, when lost, can only be explained to the kid with stuff like, “The computer is broken. Uh, until tomorrow…,” the saying of which can put you on the bad end of a person with autism’s violent meltdown?

UPDATE: A friend made contact to note that her daughter with special needs had a seizure due to the systemic disruptions caused by the storm. I was so ticked off for my sake that I neglected to mention Mother Nature’s fine contribution to those in our care.

Thanks, Mother Nature.  Thanks a bunch.

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.

A great site to visit…

A member of our son’s care giving team just shared Disability Scoop.

Lots of great content at the site, covering an array of disability issues.

I took a screen shot of the page… couldn’t resist the headline.  I mean, if they’ve managed to make air travel a grim experience for all of us, imagine the added misery for passengers with special needs.

Disability Scoop

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.