The Hamper of Love

Our son’s move to a group home is becoming like a wedding, with the exception that our family has someone moving out instead of in.

Like a wedding, the big plans all looked great on paper, but as the day draws near the details multiply like pick-your-favorite-thing-that-overpopulates.

Today was shopping for toiletries and some extra clothes for him to have at the new place.

20171104_160224Here’s the pile at midday.  I was proud of finding some sales and bargains.  I also rented a truck (no, it’s not in the laundry basket) to move furniture next week.

This morning was sweet.  His older brother and his wife were in town en route to a real wedding, and we all went out to breakfast.  Joey sat between them and smiled a lot.  Melissa remarked on how adult he’s become about social settings.  He doesn’t have to sit bookended by mom and dad.  He uses his fork and spoon like a pro (still don’t trust him with knives).  He interacts, in his own way, with those around him – when his orange juice arrived he wanted to use a straw, so he handed one to his sister in law to unwrap for him.  Yeah, he’s never gonna be cool with fine motor skills.

The weird thing is that as his moving day approaches, he’s increasingly fun to be with.  Is that just because we know the day is at hand and we’re relaxing?  Or, does HE know and is he angling for a sympathy extension at our place?

It’s on

Here’s the latest on our 23 year old son with autism’s transition to a group residence:

Yes, we have a pre-move team meeting next week and a move in date of November 1, per this message from the Case Manager,

Hello Team,

Joey and I would like to invite you to his ISP Pre-move meeting.

Date: Friday, September 22nd, 2017
Time: 3:30pm
Location: XXXXX Conference Room 3

The purpose of this meeting is to discuss supports Joey will need during his transition to the XXXXX house.

Melissa (mom) is working with Joey on feeling more comfortable with his new computer, which will move with him. He hates change so this was a heck of a time for his old desktop to go kaput.

His most recent antic was to unplug the new laptop, take it off the desk and plop it by its purchase box to say, “Send it back.”

Melissa coached him on being more at home with it, and they had a good discussion one recent morning before his bus arrived and a good hands on lesson last night.

I’m off today and we are planning to go to a sports bar that Joey likes because it is roomy and has great burgers.

Which gave Melissa leverage when he didn’t want his computer lesson. All she had to say was “Working for cheeseburgers.” He complied.

It’s on. The computer is on. The move is on.

Meanwhile the dog did some neurotic paw gnawing last night, opened a wound, and thus cancelled her scheduled bath and grooming.

That’s care giving. Deal with one issue, and the next one comes up from somewhere, somehow.

Don’t Call Us

Our publisher’s site features a bit from our book today.

If you are grappling with frustration, especially if it’s born of perfectionism and the constant setbacks of care giving, you might find this little selection useful.

pathetic-7If our efforts to raise houseplants have been hit and miss, imagine some of the misadventures of raising a son with autism. Caregiving provides instant and constant experiences of inadequacy. Just as we’ve tried various strategies to keep the plants growing, we’ve sought out an array of therapies, settings, medications, specialists, diets and more to bring out the best in Joey’s life. And even with all that help, there are plenty of withered efforts to report.

It’s not all gloom and doom.  Some of the spiritual uplift (we hope) of the book comes in as well.

Hoping you have some good growth and blooming amid all your fails and weeds today.

A dish best served with a smiley-face flower

The news is that agency staffing issues will delay our son with autism’s move to a group home (which seemed imminent about ten minutes ago) until mid-October.

Meanwhile, he’s descended upon us with increased nagging and bargaining for his Christmas list (yes, he starts early).  Mom and Dad are both on the ragged edge right now after bouts of illness and long work hours, so the din of his demands is a mental and emotional pummeling.

Yesterday we began to dish up a big ol’ plate of vengeance.  He came home from his day program with this very sweet guide to respectful communications:

20170824_173707THINK Before You Speak

T – is it True?

H – is it Helpful?

I – is it Important?

N – is it Necessary?

K – is it Kind?

BTW we stipulate that this is sound advice, not just for empathy-impaired people with autism but also for married couples, workplace relationships, social media, etc. etc. etc.  The world could be a much better place – Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. (Ephesians 4:29, The New Testament)

And yes, that’s a rack of his daily meds at the bottom of the picture.  I’m so tired that I gave up on the photo cropping function and I don’t much care.

So we used this against him with great delight,

Joey:  Be a good boy there will be presents?

Hateful parents:  Joey, is it NECESSARY to talk about presents today?

Joey:  When it’s winter there will be presents.

Atrocious parents:  Joey, is it HELPFUL to talk about this before the snow comes?

Joey:  When the snow comes there will be presents.

Should-be-arrested-and-executed-parents:  Joey, is it KIND to keep talking about presents?

Hey, you find respite where you can get it.  That’s care giving.  And it makes even a smiley faced flower stink some days.

 

Killed by life

The idea of grieving the living isn’t new to me.  A grief counselor opened it up at an autism conference I attended years ago.  There are crossovers between disability and death – dreams are lost, so are familiar comforts and joys.

Today I bumped into a good article on this topic, from the American Academy of Bereavement.  In a 2015 piece entitled Unconventional Grief: Grieving Someone Alive, AAB shares good insight,

jesus-weptThis form of grief, just like grieving someone who is deceased, does not change the level of attachment to the person. Simply, this person is no longer acting how they were before and have had a dramatic shift in personality… Unlike when someone dies, you are unlikely to experience positive emotions while grieving someone alive. When someone passes, you are surrounded by the comfort of their loved ones and are often able to look at the joy of their life. This rarely happens with unconventional or ambiguous grief. Just like when someone dies, you are likely to be overcome with sadness. However, the reminder of your sadness is constant…

The article focuses on sudden change in an adult, such as drug addiction or the onset of mental illness.  For caregivers of children with developmental disabilities, the loss isn’t so much who the person used to be, but who you dreamed of them becoming.  There’s grief either way.

Read the whole thing.  There are some positive suggestions for the grieving caregiver, including this one which has been so true of living with our son’s autism,

Open yourself up to change. One of the hardest parts of grieving someone alive is that you are forced to accept a changed relationship that you do not want. It may be difficult for you to look on a loved one in a different life, but you may be able to experience a rewarding relationship with them in new ways than before. Focusing on finding joy in your new relationship will help keep your mental state positive rather than gloomy.

Finding joy in Joey-as-Joey, rather than as the Joey of our daydreams, has been an essential care giving tool and its own reward.

And Jesus opened his mouth and taught them, saying:  “Blessed are the poor in spirit, for theirs is the kingdom of heaven.  Blessed are those who mourn, for they shall be comforted.”  (Matthew 5:2-4)

 

What’s left

We are almost sitcom laugh track worth ’round here today.

Joey, our 23 year old with autism, has a nasty cough and is home in a NyQuil haze.  He’s intoning Disney movie lines in a voice that sounds like the audio of a slow motion replay.

Melissa (mom/caregiver) is suffering from a double shot – one shot of staying up all night to care for Joey and the other a shot of recurring pain from a chronic illness.  She’s closed her eyes for a few minutes (btw I think she’s pretty when she sleeps but that’s just editorializing and so I’ll move on).

Tyrion Aftermath-of-the-attack

Tyrion Lannister visits our living room today.  From here.

I (Tim – dad/caregiver) am sittin’ here typing this while my eyes keep closing and head drops on the verge of sleep.  I have the day off but I’m sleep deprived from some kind of phantom leg pain (possible arthritis although disc problem is another one the doctor threw in to consider).

We are all beat up in one way or another, but not by one another.  If anything, there’s a tenderness in the house that is surprising given how cranky pain can make any one of us.

When all else fails (and hey, what doesn’t when you’re a caregiver?), your kindness remains a gift to those in your care.  On days when all of you are hurting, you find out that everyone in the household is a care giver and a recipient of care at the same time.

Letting another’s head rest on your shoulder is a successful intervention, “How are you?” is deep communication and “Sit down, I’ll get that for you” is heroic service.

Sometimes what’s left is you, and you’re plenty.

I sent a prayer request to a friend in the midst of our family sick day, and what he sent back says it pretty well,

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (2 Corinthians 1:3-5)

Makin’ a list…

In my energetic youth I spent summers on a church camp staff.

We had a string of international participants who were building up camp director credentials.  One of them was from Switzerland, and his English was a work in progress.  One day I came into the camp office to hear him singing Santa Claus is Coming To Town, which was strange enough in summer time but on top of that he only had three words down and was singing the whole song with those.  C’mon, sing with me now,

Makin’ a list, makin’ a list, makin’ a list, makin’ a list…

Anyway we had company last night, and they’d made a list.  Some local folks who visit this blog messaged us about our son’s upcoming move into a group home.  As caregivers to more than one kid with special needs, this is ground they’ve covered and they reached out to offer help with our upcoming journey.

They’d taken the trouble to sit down and think through issues – some small and practical, others big stuff like money and emotions – and written a list so they wouldn’t forget to open up any of the subjects.

Actually, they had a couple of lists.  One was a record of residents’ share of house expenses so we could start wrapping our heads around the budget.  Stuff like trash pickup:

20170713_081849

The care giving community is rich in hard won wisdom.  It is worthwhile to write notes, keep records, journal, *cough blog cough* and/or just go out for coffee with other caregivers to share info and insight.  We’re all holding some great resources with which to help one another.

While I’m at it, a good spiritual habit is to list moments of grace – those unsought, unplanned moments of God’s favor.  Those unexpected Thank you, God interventions. Reviewing these can lift our spirits when the inevitable hard days show up,

And I said, “This is my fate; the Most High has turned his hand against me.”   But then I recall all you have done, O Lord; I remember your wonderful deeds of long ago.  (Psalm 77:10-11)

Last night’s visit goes on that list of God’s wonderful deeds.  Our guests shared that it was one of those God things that the first post up on their Facebook feed was our last blog about our son’s placement.  We received kind help and good company (and an addictive dessert) through that divine timing.

Allies: we have the Greatest in the heavens and so many He appoints upon the earth.  Too many to list, but how moving it would be to try.

ALLIES. Find ’em.

Just got another kind review of Raising a Child With Autism on Amazon:

This is a book you pick up and don’t want to put it down until you’ve read it all they way through front to back. As a mother of a 22 year old daughter with Down syndrome I could relate on so many different levels. It gave me peace to reaffirm my belief I am not in this experience alone, my Creator is with my daughter and I every step of the way. Highly recommend the book, bought 4 to give to friends/colleagues.

It’s a book for all kinds of family caregivers.  Yes, autism looms large because that loved one in our care is a person (now 23 years old) with autism.  But as the reviewer notes, there’s value in shared insight and encouragement across “conditions.”

Triumph_Allied_Forces

Heck, get a Canadian power trio to help if you can!!!

We need all kinds of allies.  As we say at the top of this blog, Don’t be alone… The person who reviewed this book in one short paragraph notes family, friends and colleagues.  We need to build up those relationships, in person, in print, on the internet, wherever we can.  The support flows both ways, ultimately.

Here’s another call to build supportive bonds for care giving, from an adult child caring for her parents,

As a primary caregiver for my parents and other family members, I’ve found that I need different kinds of assistance. Some people help me with direct, hands-on care — assisting Dad with things like eating, getting out of the house or personal care such as bathing and toileting. But I also need help with hands-off care: dealing with paperwork, grocery shopping, cleaning the house or making phone calls and appointments… 

…When I feel alone as a caregiver, I take an inventory of our team of family and friends who feel like family and realize how much backup I really have. The keys: Don’t be afraid to ask, and think imaginatively about how caregiving can become more of a group effort. You’ll be surprised how many people are willing to help when the job is right for them.

A Second Opinion!

Last week I shared about our medical meet & greet with a new doctor for our son with autism.

I mentioned sending the piece to some doctor friends, to get feedback. They’re busy folk, so the responses will take awhile.

Here’s the first, from an Oncologist in South Carolina. He provides a reality check about our hope that a younger doctor will be available to our son over years to come,

All good advice but young physicians are more likely to be employed by hospital systems or large groups and are much more mobile these days. Finding a young physician is no guarantee that he/she will stick around for years in the same position. Also insurance networks change and force you to change doctors.

In other words, as with everything else in care giving, you have to be ready for some roller coaster riding.

I asked a follow-up: Is there a question you wish new patients would ask you but never do?

His reply,

I rarely have a new patient ask me if I would pray with/for them. I wish that would happen more often. When a new patient shares their faith with me, I am more likely to ask them if I can share prayer with them.

That’s an eye opener, isn’t it? So often, we seek a doctor as we would an auto mechanic. But human beings, including those with special needs, are more than material parts to be fixed. We are much more than that, fearfully and wonderfully made, to quote the Psalms.

I’m hoping to get some input from this guy, too,