Is it live or is it autism?

Remember those ads from the days when we used VHS, cassette tapes, and stuff like that?

No?

OK, so you’re young and I’m old. Well, here’s some of what you missed:

That tag line popped into my head this morning. On Saturdays, I usually hit the gym and then have breakfast at a local place. I always chat with one of the guys who works there.

This morning, he shared that he’d just sent his wife to an out of state family gathering on her own, because he couldn’t leave the house in the hands of their teenager. This is a neurologically typical teen, not a special needs kid. “He won’t take care of the house, the dog, anything. If my wife and I both go, the place will be trashed when we get back. I’ll just have to go another time.”

Was that just life, or was it autism? Because what the guy at the restaurant said sounds just like what a caregiver might say. “We don’t go on vacations right now, because he doesn’t like sleeping in strange places.” “We can’t go out to dinner, because she gets sleepy around 7:30.” Etc., etc., etc.

One of the traps of care giving is thinking that our challenges are not common to “normal” families. Some wacky stuff that our son does is autism; some of it is just human. That was especially so in his teen years.

Here’s a bit from one of his day program quarterly reports:

Joey has been making some progress learning and practicing the steps in doing laundry. Staff report he takes laundry to the laundry room where there is some to do, and note that there is always some staff prompting involved when working on the tasks…

OK, so put in “Mom” or “Dad” where it says staff. Is that normal life with kids, or is it autism? Our put in “teacher” instead of staff. Is it a typical classroom, or a program for kids with special needs?

It’s Saturday. I’ve been to the gym and breakfast; Joey’s had his usual donut. So I think I’ll just stop thinking too much and be like the guy in this retro commercial:

Care for the Care Giver

A beautiful meditation and blessing.

Nigel Mumford

Asleep, I listen.

A meditation for Care Givers

By

The Rev. Nigel W D Mumford

Asleep I listen,

To the breathing, to every precious breath,

To any change, to a groan, to the pain, to the fear,

I listen to the fear, in me, and in my beloved.

Asleep I listen,

To any need and want, my body asleep but my ears open,

The constant vigil, ready at a moments notice

To leap out of bed to address the need.

Asleep I listen,

To the phone, to the TV, to the radio, to God.

I pray and wonder what will happen?

Am I doing my best, what else can I do?

Asleep I listen,

Even when awake guilt pervades my mind.

How can I even go to the store, how can I leave the house?

I listen to the cell phone, did it beep, is it vibrating?

Asleep I listen,

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A creative clothing line for autism and other sensory challenges

Lauren Thierry, who recently left a career in cable TV news, has designed an imaginative and incredibly practical line of clothing for people living with autism and other sensory issues. Her son with autism, Liam, is her inspiration.

The line features soft, sensory-friendly clothing free of buttons, zippers, collars, and tags, and everything can be worn inside out and frontward or backward. Oh, and the brilliance doesn’t stop there: there’s an option to get a GPS device built in to the clothing, because Thierry knows that many children and teenagers with autism sometimes wander off.

That’s just incredible and will likely help many kids gain independence in daily routines. Independence indeed – they’ll have time and energy to focus on other tasks rather than be pinned down with zippers and buttons, fine motor task which many people with special needs find impossibly disconcerting and impractical.

St. Patrick the Caregiver

Yes, corned beef is boiling here, even though that’s likely an American adaptation and not originally Irish.

We are going to visit a possible residence for our son today, and I’ll wear a green shirt.

TullamoreProbably not drinking at all, despite all the social convention.

Instead, let me share a thought about St. Patrick that might be an encouragement to caregivers.

Patrick entered Ireland as a slave, not as the now famous missionary. He was kidnapped by Irish raiders and sold to tend the flocks of a chieftan.

After several years, guided by a spiritual vision, he escaped.

What’s amazing is that he would return to the very land and masters of his servitude, to bring them good news and care for their needs by choice.

Caregivers sometimes feel enslaved. It’s not just the chores, stinky, repetitious and burdensome as those might be, but the whole environment of laboring under a situation we didn’t imagine in our desires and daydreams. The world we knew before a special need entered our lives seems far away. It’s like we’ve been taken from home into some foreign place and put to work at the pleasure of a captor.

Patrick shows us that we can learn and grow in such a setting, and, despite all fantasies of escape, can “return” to serve with great love and the strength it brings. We can undertake the care of others as a sacred mission.

That said, Patrick was no pollyanna. He realized the the work in which he’d placed himself could be his undoing. He had a strong spiritual life, and a prayer traditionally attributed to him takes into account all the potential hardships of his day:

I bind unto myself today
The power of God to hold and lead,
His eye to watch, His might to stay,
His ear to hearken to my need.
The wisdom of my God to teach,
His hand to guide, His shield to ward,
The word of God to give me speech,
His heavenly host to be my guard.

Against the demon snares of sin,
The vice that gives temptation force,
The natural lusts that war within,
The hostile men that mar my course;
Or few or many, far or nigh,
In every place and in all hours,
Against their fierce hostility,
I bind to me these holy powers.

Against all Satan’s spells and wiles,
Against false words of heresy,
Against the knowledge that defiles,
Against the heart’s idolatry,
Against the wizard’s evil craft,
Against the death wound and the burning,
The choking wave and the poisoned shaft,
Protect me, Christ, till Thy returning.

Caregivers don’t face all of those threats, thank God, although some moments feel like hell’s been unleashed against us.

Whatever we face, Patrick gives us the example of sticking with those who’ve “enslaved” us, growing in love and service for them, and practicing high level self-care to carry out our work.

Happy St. Patrick’s Day.

High level diagnostic tools for autism

I’m at home today, as Melissa is under the weather (why does that mean “sick”? I mean, our weather is nice right now) and Joey is still coming back from a seizure or two.

It is quiet at the moment and that’s allowing me to brush up on some autism diagnostic techniques I’ve gained over the years. For example:

1) Creaking bed. This suggests several possible diagnoses and requires other confirming facts.  It can mean

  • “Quit saying you’re waiting for him to move to a group residence and just buy him a new bed already.”
  • “He’s recovered well enough to play trampoline on it again.”  (Confirmation by breaking glass sound of his head hitting the ceiling light fixture).
  • “He’s sleeping but tossing and turning.”
  • “Stop listening and get in there!  He’s having a seizure again!”

2) Sitting still in parents’ room with bleary eyes.  He’s really sick.

3) Sitting still in parents’ room with bleary eyes and not talking.  He snuck in an extra seizure while you were in the bathroom.

4) Laughing and playing a video clip over and over.  All clear.

None of the above indicate Lupus.

Joey rescues dad

I think the “spring forward” time change messed with me more than it did with our son.

He’s rolled with it pretty well. I have to nudge him awake rather than rely upon his usual early self-start, but he’s OK with that this year (he hasn’t always been so nice with time changes).

So last night I forgot to put the trash out for the garbage man.

This morning, Joey’s paratransit arrived. While Joey was walking down the driveway, the trash truck pulled up and waited for him to get on his bus.

This gave me just enough time to fly through the house and get the trash can rolled down to the curb.

The garbage man was really pleasant – I think Joey’s presence tends to soften hearts sometimes. Of course I was pouring out effusive thanks for the fact that the truck waited for my delinquent can.

Later today Melissa and I will take Joey to tour a residential facility, which is in contention to be his new home once July arrives.

Now I’m wondering if I can do without his help around here. Not good to miss trash day.

That time change thing

Our son is sleeping in. So far, so good.

The spring time change in particular messes with him. He is likely to be out of sorts when he’s up. Cranky. Anxious. More prone to seizures. The altered daylight pattern is not his friend.

I anticipated the lost hour and got enough sleep for myself, so I’m feeling pretty good to start this Sunday. We’ll see how Joey does and if any of us are feeling intact by the end of the day.

Hope those in your care (and you) come through the day well.

Day 20 In The Hole

Caregivers sometimes describe a feeling of “being in jail.” A bit of coarse language in this piece by an actual inmate, but what he suggests at the end is important. What do you do to push back at negative thoughts and emotions?

Steven D. Jennings

thXKPL4MJA

I am sharing the journal I kept while I did 7 months in the hole.

Journal entry from 12/5/08:

Today I prepared two grievances and two tort claims. The grievances are on Sgt. Paulson for not letting me choose which excess property to send out. Paulson has 3 boxes of my property that he says I HAVE to send out! Yet he won’t tell me what’s in the boxes. I’m confused! There’s no way I have 3 boxes full of excess stuff.

I asked him, “May I have an inventory sheet that lists all the content in the boxes?”

He said, “I’m not going to inventory every single item. All you need to know is its all excess and it all needs to go.”

I say, “Okay. Let me see what it is and I’ll let you know what to throw away and what to send out.”

He acts like…

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Wandering in the Wasteland

Another blogger, prone to fretting. Caregivers can become overwhelmed by thinking about “all the could go wrong,” “all that’s ahead” and all kinds of other “alls.” A good thought here.

His Truth Will Set You Free

desert

My mind tends to wander in the wasteland; those dark and lifeless places where my thoughts get captured by the dusty and dying things of this world. Worrying about things at work, fretting about home projects, wondering about the future of our shrinking world with seemingly growing violence – such places are the wasteland of my mind.

But eventually I drag my mind out of the wasteland, brush off the dust, and look back to God. And He’s always there, always waiting for me, within my mind and with my soul. He never gives up on me, no matter how often I let myself get pulled into the wasteland. And I’m so grateful.

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