The overlooked caregivers

Today is “Siblings’ Day” when one should appreciate brothers and sisters.

The brothers and sisters of a child with special needs are too easily overlooked.  It is easy to appreciate how they “help” with care giving but overlook their unique needs.

Here’s a short video that’s a helpful reminder.



Award winning author Norma Gail asked me some probing questions in an interview shared on her blog.

Here’s a bit of it, with some key quotes available for Tweets embedded by the host,

NORMA GAIL:  Autism affects 1-68 children in America. That’s more common than most people probably realize. What are the most basic things you wish people knew about Autism and the families it affects?


Lifted here.  You might find the article amusing, too.

SOMETIMES CARE GIVING STINKS: I think I speak for many families of children with autism who want to scream, “NO, IT’S NOT DUE TO BAD PARENTING.”  It’s a neurological disorder, most likely genetic rather than environmental in origin (although people debate that with some ferocity).  One of the hardest things is that kids with autism are impaired socially and so their parents can invest sacrificial work with little to no emotional connection in response.  We were spared that – Joey is very connected emotionally, albeit in some quirky ways.

There is no “cure” for autism or any one therapy that is useful in all cases.  Families hope for a “silver bullet” that will solve things, and this can leave us open to bad advice, blaming or other traps.

Parents deal with feelings similar to grieving a death.  Various hopes and dreams we hold out for a typical child often have to be given up for a child with autism.  Some kids on the autism spectrum grow up to play sports, perform in the arts, excel in academics or vocational skill, get married and all kinds of other things we think of as making for a “good life.”  But many will never experience some or all of those things.  They have other pleasures – parents have to learn to love those.

Siblings can feel ignored due to all the effort and attention put into caring for the child with autism.  The whole family is impacted.

Allies mean a great deal.  Educators, medical people, community programs, understanding churches (not always easy to find), and just plain caring folks make life better.  There’s a neighbor of ours who routinely keeps going down our sidewalk when clearing his of snow – the time and effort he saves us is a precious gift.

NG: What are some of the greatest challenges faced by parenting a child with a disability?

SCGS: As the book points out, family caregivers – and this applies in situations beyond Autism, such as Alzheimer’s, spousal disability and many other conditions – are trying to fulfill roles beyond the knowledge, skill, energy, patience and finances of a typical individual or family.  We get stretched beyond our limits and, really, beyond any realistic expectation of becoming “good at it.”

In our case, we had to deal with Joey’s “meltdowns.” Kids with autism become frustrated when they can’t understand or be understood by others, and this can lead to a violent outburst.  It’s not the same as a tantrum, in which a kid wants a toy.  It is an all consuming surge of energy in an effort to connect with a world that seems out of touch.  It is heartbreaking to try and contain a beloved child who is putting you in serious danger – Joey would punch, kick, bite and throw objects at us.

There were several years where we didn’t think that Joey or any of us would ever sleep.  The stuff that makes you laugh after the years of raising a baby keeps going when autism is in play.  I sometimes tell people, “Imagine having a combination of newborn and toddler for a couple of decades.”

Parents share war stories of dealing with “the system.”  Some school districts are downright hostile to special needs kids, considering them a financial drain on services for “normal” kids.  Then there are the insurance issues, efforts to see specialists, quests for specialized therapies – it is exhausting and sometimes fruitless.


Check out the interview.  Leave a comment there on Norma Gail’s blog and you might win a signed copy of Raising a Child With Autism.

Beer, bang, blood & BS

O, God, where to start retelling last night?

Got home from work in the late afternoon with two consecutive days off coming up. We had a fun Chinese pick up dinner; Joey downed his own weight in Lo Mein.

Melissa and I were settling in to binge watch something and I was so relaxed that I had a second beer.  Then a third.

Then, a floor shaking bang and noise  like the fusion of snoring, opera and a train going by.  Joey had a seizure.

It must have been abrupt because he usually senses them coming and gets to a couch.  This time he was down on the floor in his closet with his face shoved into the floor.  It was hard to get to him and we needed to make sure we could keep his airway open.

I’d just downed that third beer…

Melissa managed to wedge herself in with him, get a hand under his head and get his nose and mouth out of the carpet so he could breathe.

When she got her hand free, it was covered in blood.

As the seizure subsided, Joey began to rouse himself a bit and we were able to get him out of the closet and inspect his head.  There was running blood all over his left ear and we couldn’t tell if it was coming from an external cut or from inside of his head.

Melissa said, “We need to take him in,” meaning to the ER as it was evening, and she was right.  But I’d had three rapid beers and she was going to have to drive.

So we loaded up, her hair a mess and no makeup (that doesn’t bug me but she hates going out like that), Joey and I in shorts despite the winter temps.

I had the presence of mind to call the ER and let them know we were on the way and what had happened.

OK, OK, I need to back up just a bit so I can tell you about the BS.  As soon as we realized that we had to get to the hospital, Melissa had the insight that Joey gets combative after a seizure.  He just wants to sleep and doesn’t want to be poked, prodded, asked questions… it is like a man-cold on steroids.  He can get violent if pushed, no matter the pushers’ good intentions.

So she showed Joey her bloody hand and said, “Look, Joey, mommy has an owie.  I have to go to the doctor.  Will you help take mommy to the doctor?”

It worked.  She actually turned him into a caregiver, and, although we could see he’d rather do something else (hey, that’s a working definition of care giving, ain’t it?), he wanted to help mommy be OK.

This morning I realize that autism worked in our favor.  His older brother, the engineer, would have asked, “Hey, if mom’s injured, how come she has to drive?”  No such problem with Joey.

At the ER, Melissa quickly informed the staff of the BS story under which we were operating.  It was wonderful – all of them, from the receptionists, to the nurses, to the admitting clerk, to the doctor – adopted the line.  “So, what happened to you,” they asked Melissa, “and where are you hurt?”

Meanwhile, they convinced Joey that getting his blood pressure would be helpful to treating his Mom.

They very dramatically cleaned the blood off her hand so Joey could see mom getting fixed, then told him that some of the blood was on him and they needed to clean him up, too.

Thanks be to God, the bloody wound was an external abrasion.  No stitches, just some topical disinfectant and a day of rest (today) at home.

And, because of Melissa’s impromptu and epic BS, no combat.

No pics to share.  I wasn’t thinking of blog illustrations at the ER.


So here’s one of last night’s empties and some morning coffee.  In a mug that Joey painted for me.

Out with… with… I forget

So here comes the obligatory New Year’s post.  Although I think I neglected the compulsory Christmas post so I’ll cram them together.

Joey begins perseverating about Christmas presents – aka movies on VHS – in the summer.  We get mad and try to make him change the subject; Melissa makes him dictate a written list so at least some constructive interaction takes place; our eyes roll back in our heads…

presentsThen Christmas day comes, we wake him up for breakfast and presents, show him his loot ‘neath the tree, and he says…


and goes back to his room.

We eventually prevail upon him to open the gifts, which he does with grumpy histrionics before again retreating to his room without them.

Eventually, over several days, he begins watching his long desired movies and seems happy.

Well, this year we resolved (see that New Year’s hook?) to try a new approach, which was no approach at all.  We simply let him ignore the presents to see where his thought process would take him.  We offered them to him and then left them under the tree and waited.

Our older son and his wife flew in for the holiday, and we exchanged gifts with them a few nights after Christmas.  Joey seemed to get into the second gathering and opened his presents then.

Hypotheses include a) he wanted his brother there, although he did the whole “NO” schtick throughout the years his brother lived at home; b) he doesn’t want Christmas to come to a crashing end but wants to sustain the gift getting pleasure; c) oh, hell, I have no idea.

Here it is New Year’s Eve-day and I’m sitting here yelling at him to turn down the volume on the movies, which he’s enjoying.

I’m not big into resolutions.  But here’s a favorite scene that reminds me to be open to change, to quit pounding my head against autism or any other wall…

May 2017 bring you blessings, especially freedom from old ruts. May you have divine favor upon all that you offer.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come. (2 Corinthians 5:17 ESV)

No Language or Sex; Lotsa Violence

Living with a person with autism can mean very little verbal interaction and a reduction in intimate time and space. It can also open a can of whoop-a** on ya.

When our son Joey was a little guy, he would have violent meltdowns. These could come from frustration because we didn’t understand something he tried to get across to us or anxiety because he couldn’t understand something we tried to communicate to him.

One incident left Melissa with a scratched cornea. I was flogged with a rope dog toy. Another time it took both of us plus our older son to pin Joey to the floor until the fury subsided. He would kick, bite, punch, throw objects – we couldn’t ignore a single appendage if we valued our safety.

I caught this very good video on Twitter. It’s less than four minutes long and worth a viewing. It’s specific to caregivers of people with Alzheimer’s, but describes a hazard faced by many kinds of caregivers:

You have to fight your own nature as well as the person beating on you. You have to stay calm and gentle while under assault. It is a physical ordeal and emotionally exhausting.

It is freaky to face a physical attack by someone you love and are struggling to care for.  The emotional wounds can linger longer and more painfully than the bodily bumps and bruises.

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.


Next week Melissa and I reach our 25th wedding anniversary. Yep, silver. Big milestone.

“Which day of the week is it?”


“Oh, you’re home. What should we do?”

“Dunno. What would you like to do?”

“Well, Joey limits our options…”

It’s true. We can’t plan a big evening with the lad around, although in fairness we did get a respite person and some tickets to a concert the following week. And we are planning to have a clergy friend give us a blessing on the actual anniversary day.

But the reality of care giving is that it can eclipse aspects of life that would receive great attention under typical circumstances.

Siblings of special needs people sometimes gripe about getting shorted on attention from mom and dad.

Spouses put dreams off to the side and sometimes let them fade to black.

But all is not gloom and doom. Part of the eclipse factor is that we are absorbed with the possibility of Joey moving into a new residential setting (e.g. moving out) this summer. And with that comes what Melissa calls “this new season” when, perhaps, our life together comes out of shadow.

Eclipses happen. Some people read signs (always almost negative) into them, but they just happen. So it is with care giving. Yes, it changes things. It casts shadows (almost always frightening) over life. But shadows ultimately give way.

The light shines in the darkness, and the darkness has not overcome it. (John 1:5)

Love vs. Cooties (a thought for Lent)

There are all kinds of care givers. We are parents of a child living with autism. There are adult kids caring for a parent with Alzheimer’s, spouses caring for sick or disabled partners, and all kinds of other arrangements where folks are living a typical life one day and thrust into the world of medicine, therapy, advocacy, domestic labor and who-knows-what the next.

One of the frequent complaints I hear from care givers is the way that family and friends start to draw back from the situation. Some folks feel completely abandoned in their efforts to take care of a loved one. A few quotes from other care givers:

I have found that we have become more and more isolated as time goes on.

Maybe it’s too much to ask for somebody to just be there to listen or hold your hand or just exist in the same space…

I guess my question is why You’ve taken every single earthly, tangible aspect of faith from us? Church. Sacraments. Spiritual support. Friends. Family. You’ve given us both loneliness.

There used to be a similar complaint from divorced people, although the culture has changed so much I’m not sure if its’ still a reality. But over the years, I heard divorced people lament how friends, especially other married couples, floated away from them.

I think that we all share a human tendency to turn away from situations that scare us. There’s a primitive fear that another person’s dilemma is contagious, like cooties. Maybe the roots are some evolutionary impulse to separate from that which could introduce a defect into our gene pool. Maybe they are spiritual – we don’t want to stand too close to someone who seems to be suffering the wrath of the gods.

Whatever the source, a Bible passage I heard on Ash Wednesday reminded me that the real God wants us to overcome the fear and to love those is distress as though we are part of one another:

“Is not this the fast that I choose:
to loose the bonds of wickedness,
to undo the straps of the yoke,
to let the oppressed go free,
and to break every yoke?
Is it not to share your bread with the hungry
and bring the homeless poor into your house;
when you see the naked, to cover him,
and not to hide yourself from your own flesh?

(Isaiah 58:6-7 ESV)

That’s a tall order, to see someone else’s distress as a hurt to “my own flesh.” The passage puts it in the context of “fasting.” It is to starve my selfishness and fear of “cootification” in order to reach out and make another’s burden lighter in any way for which I am equipped. As that one care giver lamented in the quotes above, sometimes that’s as little as to “just be there to listen or hold your hand or just exist in the same space.”

That Ash Wednesday lesson went on to say that God blesses such love,

Then shall your light break forth like the dawn,
and your healing shall spring up speedily;
your righteousness shall go before you;
the glory of the LORD shall be your rear guard.
Then you shall call, and the LORD will answer;
you shall cry, and he will say, ‘Here I am.’

(Isaiah 58:8-9 ESV)

I pray that God’s Spirit will cleanse fear from hearts and bring loving people alongside isolated care givers.

Families can be green concrete

That’s a weird title, I know. It looks like email spam nonsense.

The house in which I grew up had a backyard covered in – I kid you not – green concrete. It was some post WWII housing boom idea. You got the green color without the yard work.

We had this strange non-biosphere because my dad grew up subsistence farming. He wanted nothing more to do with “working the land.” It was the harsh labor of his orphan childhood, and even mowing the curbside grass bugged him. As soon as I was tall enough to push a mower (remember push mowers?), the job was mine.

My mom grew up in an immigrant community in Providence, Rhode Island. She had a bricks and concrete childhood, so she actually liked the idea of earth and plants. The parts of the yard not buried in green concrete became her gardens, and she did quite well with a variety of plants and flowering bushes.

The thought hit me today (I’m fighting a virus and that means a head full of strange and muddled thoughts) that my childhood backyard symbolizes what I hear from other caregivers about family and friends.

In so many cases, caregivers lament that family and friends back away from them. They won’t come help out with the house stuff; they won’t provide some respite time for the caregiver; they just won’t, won’t, won’t. The only thing they seem motivated to do is stay away.

Those folks are like the green concrete. They exist as family and friends in some inert way, their names sitting on Christmas card lists and their faces fixed flat in photo albums and such. But they cease to form a living connection to the caregiver and the people who need the care.

I get it, I think. There’s a fear factor, like my dad’s about lawns. You let it get started just a little, and you’re sucked in for good. Family and friends see the stinkiness of care giving, and they want to keep safe distance. And the safe distance gets safer and more distant over time. The connections of dirt and water and roots and grass give way to green concrete.

I hear a few examples – and they are the minority – of family and friends who are more like my mom in her garden. These folks are drawn to dig in. Helping out with care giving enlivens them. They feel a sense of satisfaction from helping out, like planting seeds and watching flowers bloom over time.

OK, so that thought came and went. Think I’ll hit the DayQuil again and take a break.

Before I go, I’ll note that I was back in L.A. a couple of years ago and went by the house where I grew up. The green concrete was gone – in fact, it had just been broken up and the backyard was naked dirt, ready for real grass or a swimming pool or something, anything else to arrive. I didn’t feel any sense of loss – more of a chuckle and a “God bless you” on the new owners.

Oh, and one more thought. Families, I guess, are less about blood than about valuing and sharing important stuff, like Jesus says here:

And his mother and his brothers came, and standing outside they sent to him and called him. And a crowd was sitting around him, and they said to him, “Your mother and your brothers are outside, seeking you.” And he answered them, “Who are my mother and my brothers?” And looking about at those who sat around him, he said, “Here are my mother and my brothers! For whoever does the will of God, he is my brother and sister and mother.” (Mark 3:31-35)

Not so fast on that “Out with the old”

“Out with the old, in with the new.”

Flipping a calendar from 2014-2015 and expecting change is, on the one hand, realistic, since little to nothing of this world is permanent.

On the other hand, there’s a superstitious dimension to our thinking.  “Ah-HAH!  A new digit is showing on the calendar, therefore stuff has to get better.”  I had to laugh – actually, I had to switch stations – as a news broadcast on my car radio gave time to an astrologer to opine on what the stars were telling her about 2015.

Life is like a game of hot potato, with our own choices, actions, external events and forces beyond our control all flipping our reality around.  We certainly shape a big chunk of our own circumstances, but after a couple of decades of dealing with autism  I’m not one of those people like mass murderer Timothy McVeigh, who before his execution invoked that creepy pagan “I am the captain of my soul” poem.

The truth?  Some stuff – plenty of stuff – is securely in my hands, and plenty more is hurtling toward me from a blind spot.

The ambiguity of life is palpable right now.  2015 brings Joey’s 21st birthday, which sets up his move into a group home.  Melissa and I have looked toward this – sometimes with “Are we there, yet?” desperation – for years.  But we also imagine looking across the hall from our bedroom to his and seeing it empty.  That’s going to be “different,” to use an empty word for some emotion we’d rather not feel at the moment.

We just had our last in-home meeting with a wonderful case worker from the community agency that serves Joey so well.  A cast of supportive characters in whom we are confident and with whom we are comfortable will be changing with Joey’s next steps in life.  I’m sure the new team will be great, too.  But the change doesn’t inspire “out with the old, in with the new” noisemakers and party hats.

Our older son and his wife (Tim and Carly – I never seem to name them in these blog things) have been in for Christmas and New Year’s.  We’ve delighted in the time with them.  Tomorrow they fly back to their home and near-future in Charleston, SC, and we won’t see them again for months – maybe not until this time a year away – depending upon the hot potato match between what we do and what life throws at us. The new intervals between visits stand to lengthen now that they are married, graduated and working.  So some of “the old” was a plus sign and “the new” might be dangling a minus at us.  Flipping a calendar page is symbolic of that, but not decisive to how the equation works out.

Anyway, enough New Year’s Day musings.  We pray that the One who holds past, present and future together brings you blessings, most of all the inner peace that comes from knowing Him as the undefeated champion of hot potato:

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. (Romans 8:37-39 ESV)