People speak of being “carried away.” When it comes to care givers, a depression or a rage can grab us for no apparent reason and take us on an unwanted ride.

I think that this has to do with accumulated stress and other emotions we have to swallow in order to give some kind of decent effort to those in our care. It isn’t fair for us to emote all over them, as they have plenty to bear as it is. At the same time, it isn’t fair for us to just walk away from them to deal with our stuff when they need our care. So there’s always the risk of burying some intense feelings only to have them pull us down later.

For those who might be landlocked, there’s a thing beach goers deal with commonly called a riptide. It’s an intense outbound current that can grab a person and pull them out to sea. The emotional messes I’m describing are like that – one minute we’re just wading through the day, they next we’re yanked into the depths of extreme emotion.

What to do?

The first and most obvious is to avoid the riptide. Lifeguards put out warning flags and signs when rip currents are detected. Those on the beach can enjoy the sun but need to stay clear of the water.

In care giving, this means taking advantage of all the self care opportunities one can, to stay out of a destructive emotional current. Basic stuff like diet, exercise and sleep; higher stuff like prayer, friendships and hobbies; as-needed stuff like counseling.

Problem is, when it comes to emotions, we tend to get stupid. That’s what dear departed Robert Palmer sang with allure…

“Where will it take me? What shall I do?” Care givers get as brain dead as lovers, I’m afraid. We let our emotions pull us in directions that are at best embarrassing and at worst deadly.

So if we can’t stay out of the water, we need to employ riptide survival strategy.

When caught in a literal rip current, one must not fight it. You can’t swim against it because it will just drag you out and leave you exhausted in deep water far from shore.

You actually go passive and kind of ride the stupid thing, because the current eventually peters out. You then swim parallel to the shore, not right back toward it, because the current is narrow and you can get around it. Once you stop feeling resistance, you can swim safely back to the beach.

All of which is to say, we just have to accept and ride out a foul mood from time to time. Much as we would like to do something about it, once it’s there, it’s there and fighting with it only exhausts us and takes us under.

We recognize this with physical illness. If we wake up with a head cold, we just know that whatever we do for the rest of the day will be less than our 100% best. Normal stuff will have a tinge of discomfort. Fave foods will be less tasty until the cold passes. We need to give ourselves that same permission to just accept the limitations of a crappy mood swing.

Is there any help to be had?

A swimmer pulled out by the rip current might eventually receive help from a lifeguard. If so, the right thing is to follow instructions – let the rescuer lead. Don’t panic, grab on and create danger to both parties.

In other words, don’t dump your mood on anybody – especially not the person in your care. Don’t take it out on the waitress or the customer or the friend who drops in. Feel free to say, “I’m in a bad place right now, I need to be alone.” Vent if someone offers you a shoulder to cry on, sure. But let the rescuer lead. Don’t grab on and start thrashing.

And if I didn’t say it up above, don’t exhaust yourself. Don’t let others confuse you with exhortations to swim harder against the current. Like the Sick Puppies say, “Floating down in my own riptide, the water is fine.” Give yourself time and space to ride it out.

Paging Blanche DuBois

Yeah, the kindness of strangers can be a big part of getting by, as poor gone-around-the-bend Blanche reminds us,

In our last post, Tim’s head was exploding because our son’s disability check didn’t show up and bill paying day was at hand. Some folks who read that post sent funds that more than covered the shortfall. We didn’t ask for the help – it just came.

OK, they weren’t total strangers, but they are far from folks we know well enough to call up and say, “Hey, give us some money.” In fact, we don’t even have the phone numbers of our latest benefactors.

It is hard to rely upon the kindness of others – be they family, friends or strangers. Pride looms up. There’s the manly “I can handle it myself” variety, and the prissy “People will look down on us!” vapors.

These thoughts deny the reality that we live in a constant state of grace, reliant upon others to care for us every bit as much as those in our care depend upon our efforts. Most of all, reliant upon a love that we can’t possibly earn or deserve,

Keep your lives free from the love of money and be content with what you have, because God has said, “Never will I leave you; never will I forsake you.” (Hebrews 13:5)

That love came our way again, uninvited, in the form of those who reached out in our most recent need.

Meanwhile, we are in touch with a specific person at our local Social Security office (another reason to keep all the paperwork – sometimes there’s a name in that stuff), and should have Joey’s benefits restored shortly.

Thanks for your prayers and encouragement. These treasures also came our way since the last post. We pray that an abundance of gracious kindness comes your way in the days ahead.

Head exploding in 3…2…1…

bs 004So the bank called to let me know that the check I wrote from our autistic son’s account isn’t funding.

That’s the account into which his Social Security Disability automatically deposits.  Or did until this month.

That’s the account on which dad is the payee so that the funds can be used to support the kid.

Got on the phone to Social Security.  They are saying he’s too old for benefits as a student under his mother’s SSD.  I’m saying that’s not the benefit he was receiving.

I did all the paperwork, including the establishment of legal guardianship and the kid’s own bank account, to have him cared for as a disabled adult in his own right (which is what he is).  That’s why I did the hours of online documentation and sent all of his medical records and releases to Social Security.  That’s why… hell, I’m not going to make myself sick(er) saying this all over again.

Waiting for them to call back.  Unless I go on a crime spree or just wander off into the Badlands.  What I said on Facebook:

On hold with Social Security. Autistic kid’s disability benefit has ceased. They had him down as receiving some kind of “student benefit.” I had done all the paperwork, medical records, etc. for his full disability. Upshot is, there’s a big check bouncing around because the account on which it was written didn’t receive the expected monthly deposit. I’m supposed to turn 55 this week. Might not make it. The season of chaos and stress does not seem to end and it’s going to be enough to make some part of my brain or cardiovascular system blow up.

Unwelcome help

Today I’m sharing something I caught on Facebook.  Cassandra T. Roffman, a care giver in The Garden State, calls it My Comical Rant, but there’s some meat to it.  Wish I could claim credit, but it is Cassandra’s brain child.

It contains some coarse humor.  I altered one line for clarity.  And I left the typos and abbreviations intact ‘cuz that’s how we roll on fb.


Ok, so I don’t know about the rest of you, but I’m making a list of phrases that I’m sick of listening to as a [care giver]

“What doesn’t kill you makes you stronger”
Nope. Wrong. If you attacked by a bear or a shark and survived, you’d be very badly injured. Not stronger.

“When one door closes, another one opens.”
Unless its on a relay, no, it does not.

“Everything happens for a reason.”
What possible freakin reason could that effin be?! Because this SUCKS and I’ve yet to figure out this reason!

“If you’re going through hell, keep going”
Umm.. I’m sorry, I did not program my Garmin for “hell” and since I’m not getting any satellite signal and because i dont have male parts, I’d like directions.

“Breathe. Let go. And remind yourself that this very moment is the only one you know you have for sure.”
STFU Oprah, yea I’d like to have a rich old man too in my life, maybe I could be a little more encouraging!

“Life is what happens while you are busy making other plans.”
Yea, well John, bet your plans didn’t include getting SHOT either.

And my least favorite saying:

“Everyday is the first day of the rest of your life.”
I call Bull $hit. The definition of insanity is doing the same thing over and over and expecting different result. So just waking up everyday proves you have to be freakin insane.


So, dear friends and family (and assorted types who like to butt in), platitudes make care giving stinkier.  Please just be close and let us know that our imperfect selves are loved, respected and valued.  Don’t invoke some magic phrase to make us all better, because you are likely to say something unwelcome that will make the day worse.

Learning to accept autism options

Geez, several weeks since last post.  But I’ve been on a steep learning curve, mostly by field studies here at my house.

I am learning that when it comes to autism, care giving requires flexible application of the life options offered by the person in my care.  A few examples:

The greasy finger condition caused by pizza consumption can be remedied by

a) the damp paper towels provided by the care giver or

b) the autistic person’s own hair.

A bathroom accident, kitchen spill or other environmental hazard warning can be effected

a) verbally, by the autistic person saying something like “Good job clean up the floor” or

b) symbolically, by the autistic person handing the care giver a stick of deodorant.

Soiled clothing can be set aside for cleaning via placement in

a) a bedroom hamper or

b) another room’s waste basket or

c) a drawer full of clean clothes.