Recovery reversal

Our son with autism has Seizure Disorder in his overall diagnostic and safety data.  The seizures came on with puberty and were terrifying intrusions in his teen years.

Now he’s in his 20s and the seizures have faded but not gone away.  They show up now and again with much less intensity.  Well, for him.  Not for us.

It used to be that a seizure knocked him out for a good 24 hours.  He would sleep and snore or at least breathe heavily until a groggy reentry into our world.  ‘Twas up to us to stay alert and watch over him.

Last night he was here for dinner and a small seizure broke through.  He knew it was coming; he knelt on a big beanbag chair in our front room and hugged the dog, protecting himself from the risk of a fall.  (Confused the heck out of the dog, though, as our son seldom interacts with the pets).

We thought, Wow, that’s sweet!  He’s hugging the dog… Then we noticed his forearms were rigid and vibrating.

It ended quickly.  We rolled him on his side on the beanbag chair but he was up and talking in a few minutes.  He went on to have full dinner and a pleasant evening amusing himself and deflecting our efforts to engage him in anything that seems like work (that’s normal – a sign that he’s fine).

Today he was all smiles, had a big breakfast and is off to his day program.

We, in contrast, continue to recover.  Neither of us slept well, as we hovered on the edge of sleep listening for sounds of another seizure.  I took a sick day from work to recover.

It is good that he’s moved on to his group home, because we are so absolutely aging out as caregivers.

Today I feel for the folks who care for (and age with) their spouses, who don’t have group homes or agencies to take over the work.  As one said,

They looked at my diet. They looked at my life style, my BMI and they are like “There is no reason for this!” I am almost diabetic and there is nothing to indicate WHY I should be – STRESS!!!!! That is one of the worst things on a body – my body can’t take much more STRESS! Despite the yoga, the chammomile, the meditation, the walking and support -being a caregiver is MONOTOMY PLUS and horribly stressful. There is no cure.

Pardon my language, but…

Upside Down

Well, not literally.  I’m not flipping the car or other antics described in the last post.

The publisher of my book about the care giving experience occasionally posts excerpts on the web.  One came up today, and it flips into that “upside down” feeling,

I guess it can’t be any other way. There is no magic cure for autism. You have to take in lots of advice and experiment with different approaches because what lifts the life of one autistic kid could be fruitless or even counterproductive with another.

upside down me

Care giving: actual footage.

The universal manual of “normal” parenting fails to help. Normal parenting is to yell if you spot an emergency in progress. But if we’d raised our voices and warned Joey, “Hey, put that down. You’ll put your eye out,” we’d be living with a Cyclops by now. You learn to use soft, reassuring tones to say, “Honey, you’re standing in front of an oncoming bus there. How about standing with Mommy instead?” You find yourself looking at the world upside down.

Care giving is a practice in which common sense and conventional wisdom take frequent beatings.  Which is why I try to share some spiritual perspectives here from time to time.  Misery loves company as it stands on its head, and it also cries out for help that can bring things into perspective.

We’re being followed

Here’s a bit from Raising a Child With Autism, courtesy of the publisher,

I was more on top of weed-pulling in our first garden. I had the energy of youth, the pride of a new homeowner, and it seemed urgent. Likewise, in the early years of Joey’s life, we were young enough to run ourselves ragged trying to do everything: work on every skill and learning drill, coach him through every small task, try to keep him engaged, clean up after him, visit and consult every expert, and go to every seminar and meeting. As each year passed, we accepted more freedom just to say “no.” We accepted that there would be all kinds of needs and issues all the time.

We also learned more about depending upon others. I pay friends’ kids to pull my weeds these days. In raising a person with autism, there are free services and activities out in the community, and some for which you have to pay. Either way, there are good and competent folks who can enrich the life of a person who lives with autism.  

You can spend all of your time pulling weeds. You’ll have a nicer garden, a sore back, and a growing sense of futility. The job is never done.

20160317_153607

Strong mind, weak back

When advocating for our son’s placement in a group home, one of our arguments was our increasing age and the upcoming physical challenges of ’round the clock care for an adult with autism.

Now that he’s placed, our incredible wisdom is validated.

This week, Tim was diagnosed with something called “frozen shoulder.”  As the Mayo Clinic reveals,

Certain factors may increase your risk of developing frozen shoulder… People 40 and older… (Note: Tim’s about half past 40).

Even with Joey in a good group home, our age impinges on what we can do for him.  We just bought the new bed he needs, and Melissa’s call to the mattress place went something like,

My husband can come pick it up, but he’s got a shoulder thing.  Can someone there help him get the mattress on top of the van?  And can you tie it down for him?

Which is to say,

Flurry of memories

20180414_132115Much of our region is shut in by a massive blizzard today.  The City of Sioux Falls is asking people to stay off of city streets, let alone risk country roads or the Interstates.

Now that we are empty nest, I find myself remembering the anxiety that would have accompanied this kind of day when we had our son at home.  Everything would be wrong and a potential meltdown: if the weather cancelled an anticipated outing; if it prevented fulfillment of a whim for some particular food that wasn’t in the house; if any daily routines were in disarray.

Boredom would make him edgy and mounting stress could issue in a seizure.  But he wouldn’t engage in activities we tried to share.  He’d generally vocalize some demand that was impossible to meet and his tension would escalate.

Today he’ll be in his group home.  He has his own room with a computer and movies in case he wants to be alone.  There are common spaces with things to do if he wants company.  And there are staff there with the residents doing what we used to do, and we are grateful.

Stressful days are not limited to snow days when it comes to autism and care giving.  School vacation or “in service” days, when routine is removed, can be walks through hell.

My respect goes out to all who are shut in today, be they people with special needs or their caregivers.  Whatever inconveniences and challenges most of us endure, they have an extra helping or two.

Autism Awareness Month

There are so many good voices and resources out there to give greater insight into the lives of people with autism.  More and more, they are able to step up and represent.

Book CoverIf you know a family caring for a person with autism, chronic illness or other special needs, we hope our little book might be one useful voice you hear.

If you buy a copy and want it signed, let us know via the email button at our Facebook Page.  We’ll give you mailing instructions and work out a plan to get the signed book back to you or to someone you want to have it.

Thank you for reading here.  Most of all thanks for caring about autism, caregivers and the world around you.  Many blessings to you.

“I need help, please.”

I need help, please was a bit of expressive language that some good teacher or therapist helped our son with autism to use years ago.

For a person like our son, navigating an array of impairments like fine motor and personal care skills, the request is vital for opening a bottle of juice or getting to the bathroom on time.  (Of course he also learned to use it to enlist mom and dad for remedial action; I need help, please could signal a wardrobe change or a bathroom cleanup.)

It’s a sweet phrase in our family life.  It’s entered that volume of cute things the kids used to say, so my wife and I might raise our voice to a childlike tenor and say it if we can’t  find some item around the house.

But it came to mind in a more serious context this week when I asked a clergy friend about his Easter service at a residential care facility.

He shrugged and said, Well, there aren’t that many there to attend because they don’t have enough staff to house the population they used to.

help

From here.  They need help, too.

I need help, please.

People with special needs need family caregivers.

Family caregivers need professional allies in public and private agencies.

Public and private agencies need good human and financial resources to support individual and family needs.

The need for help is broad, but energy, money, time, staff, space, love and other resources can be in short supply; either hard to find or quickly exhausted and slow to replenish.

It’s a tough and perennial problem, even for the ultimate caregiver,

And Jesus said to them, “The harvest is plentiful, but the laborers are few. Therefore pray earnestly to the Lord of the harvest to send out laborers into his harvest.”  (Luke 10:2)

A different kind of death

The days after parents hear their child has a disability or special need can be difficult days… Most parents go through a mourning process. The expectations and dreams they may have had for their child die and new ones must take root.  (Sandra Peoples)

003Easter is about an empty tomb.  The expectation that “It’s all over, all is lost” gives way to new life so amazing that, at first, it’s beyond words,

And they went out and fled from the tomb, for trembling and astonishment had seized them, and they said nothing to anyone, for they were afraid.  (Mark 16:8)

May the surprise of Easter give you new hope – new LIFE – in place of whatever you’ve had to give up.  Don’t worry if you can’t hang words on it right away.  Just live it and the One who gives it will help you understand.

Quicker to hear, slower to speak

In Raising a Child With Autism, I wrote,

Joey is not what we made or failed to make him.  He’s always carried strengths of his own that we can admire as precious gifts from God.

More people with autism are expressing their own points of view.  For caregivers, these can be challenging but are precious to our efforts to provide care that is loving as well as “effective.”

Dan Jones is an adult with autism who shares his experience and insight via books and articles.  In a blog piece on Applied Behaviour Analysis, he praises ABA for providing tools that give people with autism behavior choices in school, the workplace, and other social settings.  At the same time, he raises a caution,

Another issue with ABA is that it is just ‘identify the behaviours that we don’t want the child to do and change them, identify the behaviours we want the child to do and get them doing those behaviours’. As mentioned, it misses the ‘love’ element, the respect for the child and what they are communicating by their behaviour and their inner world and emotions.

Care giving needs that love element.  There are all kinds of efforts we apply to teach skills and eliminate unpleasant and even dangerous behaviors, but we should not overlook the day to day relationship exchanges that can help those in our care express and embrace things that enrich their lives.  In another bit of Raising a Child With Autism, I recall how

Several doctors praised us for our son’s emotional connection, affection and happiness. Those who live with autism, whatever they might feel within, are challenged in their ability to express it and seem aloof if not completely detached from the feelings of those around them.    We didn’t have special knowledge or strategy to cultivate Joey’s warmth toward us. We just stayed close to him early on.

Melissa sang to him on days when he didn’t seem to hear a note; as a young adult he can enjoy an entire musical at the local playhouse.  We talked to him as though part of our conversations even when he didn’t make eye contact or walked away; now he can attend social events even if he just stands smiling on the edge of the party.  We made his place at the dinner table even when he had the habit of taking a bite and then running a repetitive pattern around the house (we would shrug and say, “Hate to eat and run…”); now he eats in restaurants.

There’s a nugget of spiritual insight in play here.  In the New Testament, the Letter of James encourages those who would be loving people to

…be quick to hear, slow to speak… (1:19)

Those in our care might not be able to express their hopes and disappointments, joys and hurts, dreams and fears with words.  But their’s is a language of the heart that can be shared over time if we slow our anxious antics enough to hear it.

Sink your teeth into this

A dental hygienist and care giver to a son with autism did a bit of field research on what could help make a visit to the dentist a success for the child and family.

She found five factors, with communication central to the whole effort.  She visualized it this way:

Autism dental

From the linked article.

Note the importance of Parent carer confidence.  There’s the saying that you should be your own advocate when it comes to your medical care.  Caregivers have to advocate for those who rely on our help.  In the case of dental visits, the author of the study found that

Parents expressed a lack of confidence in approaching the dentist when issues arose. They often assumed that the dentist’s education had provided enough training to understand and support individuals who struggled attending dental examinations. For those parents confident enough to ask for minor changes to meet their child’s individual needs, they reported that these requests were often met with reluctance. Therefore, despite their best efforts, dental visits were largely unsuccessful.
Dental teams that took time to respond flexibly to parental requests for support had more positive experiences. Check-ups were also positive when the whole dental team became involved in the care of the child. This was demonstrated by one dental team who discovered a boy’s love for washing machines. There was a washing machine at the practice so the receptionists would take him to see it if the dentist was running late, or after his check-up.
Helpful strategies included providing information on what to expect before a check-up and making thorough notes so parents did not have to repeat themselves at every appointment. This continuity before and after a check-up was really valued by participating families.
When we express the likes, dislikes and needs of those in our care, we find that we can make allies.  Sure, there are people and places that lack flexibility.  It’s up to us to seek out and open up the practices that are supportive.