A short and powerful video expressing family care giving. There are many ways to share our stories and help others know what’s going on, and this is a fine example,
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:
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.
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.
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.
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.
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?
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.
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.
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.”
Here’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:
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…
And 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.
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.
I 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.
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…