Good for LEGO

The popular LEGO building block toy company just included a figure in a wheelchair.

Lego Wheelchair

Photo by Promobricks

The new character is intended to give a feeling of acceptance to children living with disabilities, according to this article.

I see other possibilities for children, grandchildren, siblings and other kids who interact with the special needs of family and friends.

Play is a great opportunity to give the typical, able bodied children imaginative insight into care giving.  LEGO play might be a child’s first recognition that a figure in a wheelchair needs wider access doors and ramps instead of stairs as block buildings snap together.

It is a chance for adult care givers to ask questions about how the LEGO figures interact in scenarios the children create, helping stimulate awareness of how special needs involve the entire family and the community beyond.

Good for LEGO for taking this step.

Resisting great evil

Sometimes Care Giving Stinks assumes that taking care of people with special needs or disabilities is often unpleasant work.  And work that is unpleasant can be deflating or even depressing.  We doubt our impact, competence and value.

January 27th is International Holocaust Remembrance Day.  Hitler’s effort to infuse his nation with a sense of value as a “master race” led to the complete devaluation and destruction of millions, including people like those in our care,

The Reich Government has passed the following law, which is announced herewith:

Article 1

(1.) Anyone who is suffering from a hereditary disease can be sterilized by a surgical operation if, according to the experiences of medical science, it is to be expected with great probability that his offspring will suffer from serious hereditary physical or mental defects.
(2.) Anyone who suffers from one of the following is to be regarded as inheritably diseased within the meaning of this law:
1.  congenital feeble-mindedness
2.  schizophrenia
3.  Circular [manic-depression] lunacy
4.  hereditary epilepsy
5.  inheritable St. Vitus dance(Huntington’s Chorea)
6.  hereditary blindness
7.  hereditary deafness
8.  serious hereditary physical  malformations
(3.) Furthermore, persons suffering from chronic alcoholism may also be sterilized.

(From the Law for the Prevention of Genetically Diseased Offspring, Germany, 1933)

The work that you do – the sacrifices of your preferences and pleasures, the trials and many errors on behalf of others, the willingness to have your heart broken over and over – is true resistance against the evil that always stalks the world.

The work that you do – investing yourself in lives that the world too easily classifies as “not contributing to society” or “not meaningful” – is part of a complex expression of human compassion that stands in the way of zealous madness and folly.

Evil can appear attractive and robust while compassion, in forms like care giving, looks haggard and weak.  The ancient Prophets of the Jewish people understood this, and told the world that the true servant of God would be someone who

had no form or majesty that we should look at him, and no beauty that we should desire him. He was despised and rejected by men; a man of sorrows, and acquainted with grief; and as one from whom men hide their faces he was despised, and we esteemed him not. (Isaiah 53:2-3 ESV)

What you do, even when it stinks, is an expression of humanity’s choice between good and evil.  Today let us mourn and honor the victims of the Holocaust, and let our lives be devoted to the inefficient, clumsy and unattractive love that mocks the “great” people and powers that inflicted evil on them and that afflict the world today.

 

 

Up to my eyeballs

Yeah, the blogging’s been on hold.

There’s a book about this stinky care giving coming out later this year, and the publisher is actually sending me stuff to do.  Stuff with deadlines.

Blooming Idiot Title PageLook, here’s a screen shot of the title page —>

See any typos?  Let me know.  I have a week to hunt them down and report back to the editor.

But wow, to see the book in a publisher’s font instead my own laptop documents is a bit of a lift.

All of which is to rationalize more not-blogging on my part.

But seriously, when the book does come out, I hope and pray that it will be a blessing to you and to other care givers you might know.  Meanwhile, back to deadlines, and chores, and waiting for a staffed apartment to open up for our son…

 

The Beanbag Mountaineers

We were tickled the other night when friends came over with their batch o’ boys.  The guys are really fond of our son with autism, aren’t freaked in the least by his mannerisms (and his tendency to ignore or walk away from them when they try to be friendly) and they have teen and young adult female kin… Joey isn’t super demonstrative but he’s absolutely more social when girls show up.

I (Tim) was passing by Joey’s room and caught this picture of the beanbag mountain of boys hanging with a very relaxed Joey…

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Can you spot the person with autism in this picture?  What was the clue, Sherlock?

Sure, Joey was trying to convince them to help him overcome our VCR protection system.  But they wouldn’t be fooled and a good time was still had by all.

One manifestation of Joey’s comfort is that he will come and sit with the others to eat.  We had a pizza spread and Joey sat himself the group table rather than go off and eat by himself in another room.

We have our share of self-serving reasons to look forward to Joey’s placement in a group home.   But we have his best interests at heart as well.  His social life and skills will be enriched.  He loves us and vice versa, but he gets bored at home, doesn’t want to “do stuff” with us because he perceives that as “work,” and spends a lot of his time nagging us about movies he wants or protesting our VCR protection thingy.  That’s not all autism – that’s normal teen/young adult differentiation.  He needs his own life with peers.

While the waiting goes on, we are grateful for friends who enrich Joey’s life, just by being themselves and sharing good times with him.

 

Dominoes falling

Late last year I (Tim) noted here that I was stepping away from almost 30 years of pastoring churches.  I don’t know if that was the first domino to fall, but it is certainly one in a line of related changes ’round here.

dominosI stepped out of that emotionally draining work (really, another form of care giving) and, in short order, found myself less glum and stressed at home.  Melissa notes that I come home much perkier and roll better with intrusions like snow shoveling, bed frame collapses (I don’t think I bothered to blog that, but Joey’s bed frame required emergency disassembly and disposal) and putting VCRs out of their misery.

All of a sudden the chores called forth by care giving aren’t as burdensome.

I smile and laugh a lot more.

I sleep better.

I bumped into someone I hadn’t seen for a few months and the first words out of her mouth were, “Wow, you look younger.”

At the same time, I’ve taken a job that is doesn’t bleed me dry emotionally but has me away from the house more.  Which means…

Melissa is sentenced to longer stretches of each day alone with Joey and his needs, demands and antics.  That’s a big ol’ domino that fell on her.

Our calendar is a mess.  Doctor appointments set up months ago have to be rescheduled because I’m not available to watch or transport Joey.  Melissa and I enjoyed a weekly early dinner date – that’s been “suspended.”

Finances are… uh… adjusting to the change.

The dog and the cat seem to like the new arrangement because they get to go outside (dog) and sleep on the bed (cat) longer and later in the day.

It is likely that all the clickity-clacking will slow down in February.  Joey will start an extended day program that will give Melissa respite.  The financial reorganizing should be in shape by that pay cycle.  Who knows how many decades younger I’ll look after a few more weeks without infusions of toxic stress.

Care givers snort when we hear the advice, “You have to take care of yourself.”  I finally got around to doing so via a big, abrupt (and way overdue) change that’s certainly improved my daily quality of life, but it’s caused chain reactions with mixed outcomes for the rest of the family and others in our lives.

Sometimes taking care of ourselves stinks for those around us.  But if we don’t do some things to keep ourselves well, we will simply fall down.  Not with the click of a domino, touching and moving others, but in an inert heap that’s no good for ourselves or those in our care.

 

 

 

 

 

Assistive technology

According to the United States Assistive Technology Act of 1998, assistive technology (also called adaptive technology ) refers to any “product, device, or equipment, whether acquired commercially, modified or customized, that is used to maintain, increase, or improve the functional capabilities of individuals with disabilities.”

(Digression/Note: spell check prefers adaptive.)

We’ve mentioned too many times to count that our son with autism, Joey, likes to watch movies old school, on VHS.  He also likes to push buttons for rapid replay and change, and thus breaks machines which are increasingly hard to acquire.

After his latest VCR destruction, we went in search of another machine (devouring Tim’s day off, of course) AND some kind of assistive technology to keep Joey from pushing buttons.

We almost murdered the salesman at one store.  When we asked if there were any contraptions to cover off the VCR buttons, he said, “It’s called parental oversight.”  Ah, yes, the old “bad parenting” meme explains it all.  Almost had to go all assistive on his a** attitude.

On a whim (or bit of divine guidance), we checked out a local store that sells “retired” hotel furniture.  And there we found a piece of assistive technology… from some 70s motel… the only one of its kind in the whole store… maybe the last one on the planet…

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It’s almost perfect.  The cabinet space is wide enough for the VCR.  The plywood back has a big ragged hole in it for wires to run through.  The bottom drawers can hold plenty of videos.

Friends came over to help us tote it in and set it up.  The only downside is that the hasps on the cabinet doors are too far apart for the lock I envisioned.  So we had to improvise.  Joey defeated a wire hanger thingy that we fashioned.  Shoelaces didn’t work at first but we doubled them and tied some hellish knots.

He’s grumpy and protesting but we just smile and say, “What movie do you want to watch?   You can watch a movie, just no pushing buttons!”

So he can watch whole features just like the rest of humanity.  If he wants snippets or previews, he can use his old computer and YouTube.

The assistive technology seems to work… for US.  WE feel much better.

Heh heh heh heh heh.

This might help you recover

Well we’re on the other side of the holidays and still too frazzled to blog.

Bumped into this article on being at your wits’ end.  It’s probably stuff you’ve heard before, making you want to strangle the well-intentioned adviser, but this one has visuals… and they alone will make you smile and relax.

Unless care giving’s blown you up from the inside out, which we would understand and not judge in the least.  But give this visually enhanced article a try.

Oh, and Happy New Year now that we’re about a week into it.