Puppy Dog Tales

Yesterday was the long anticipated Sunday night battle on Game of Thrones introduction of our son with autism, Joey, and our new puppy, Henry.

It was, well, autistic?

Henry wiggled up all full of canine cuteness and joy and Joey didn’t make eye contact.

“Joey, this is Henry” we squealed with caregiver cuteness and joy.

“No” came the J-man’s “I’m not interested” reply.

Henry Peter Griffin pose

Reminds me of Peter Griffin after a fall on Family Guy.

Henry sulked.  His 8 puny weeks of life have been non stop adoration by the cosmos.  When we apologized for posting so many puppy pictures on social media, several people replied “There’s no such thing as too many puppy pictures.”

So Henry had his first moment of existential rejection, courtesy of autism.

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It’s not that Joey doesn’t care.  His affect was aloof when it came to Lily, our dear departed Black Lab.    But when we she spent a night with the vet Joey wore a distressed face and kept saying “Lily’s not here.”

Henry just experienced one of the stinky things about care giving.  You put your emotions out and you don’t get the responses you want.  We’ve been relatively blessed, as Joey has been emotionally connected (albeit expressed in some roundabout ways); many families of people with autism would kill to get even some roundabout engagement.

Lily last picture

In her day, Lily wasn’t put off by Joey’s autism.  She would hover protectively after he suffered seizures.  And in my very last picture of her  – wouldn’t you know it – she’s sharing sunshine with Joey by last year’s freshly cut Christmas tree.

 

As for Sophia the cat?  fuggedaboutit

 

Be a voice while waiting for a voice

APRIL IS AUTISM AWARENESS MONTH

A mother with considerable language skill shares about coming to terms with her daughter’s autism:  

As a speaker of English, Italian, French and Russian, the fact that my daughter did not have speech was a constant source of despair…Yes, I still find myself hoping that one day my daughter will speak to me and tell me all about what it’s like be autistic, but for now, I can wait.

The mom makes use of her local newspaper to share insight into autism and the needs of family caregivers.  Being a voice for those in our care and for caregivers can spread not only awareness but opportunities for support and compassion:

Without a support group, I had no guidance on how to deal with issues created by my daughter’s condition in public, so I did the best I could to be honest and take responsibility.

When a stranger would scold my daughter or shout at her for behaving inappropriately in public, I would say, “I’m sorry. My daughter has autism. We meant no offense.”

I didn’t know how people would react, and I was surprised by the response I got. Often the person would say, “I’m sorry. I didn’t know.”

But sometimes they would say, “I have three grandchildren with autism,” or “My niece and nephew have autism,”or “My best friend’s son has severe ADHA and is on the spectrum.”

On at least one occasion, a complete stranger came up to me afterwards,, and told me about a member of their family with a disability.

There are a lot of us out there, and if you follow the news on autism, there are more of us every day.

Often we would take a few minutes to talk about the difficulties involved with rearing a child with a disability and the stress, not just about behavior, but also of not knowing where they will be developmentally in 10 years, or 20 years, or after you’re gone.

I learned that I wasn’t alone.

Recently, a group of us in Yankton formed our own “Mothers of Disabled Children” support group. It’s small, and we’ve only met a couple of times, but I already look forward to hearing about what’s going on with the other moms and their kids — without judgement.

It is a great example of communication with the community, both in the happenstance encounters she describes and in the intentional formation of groups and use of local information sources.

 

Sprechen Sie my stuff?

Back in my Army days in Germany, I was sitting with some friends in a restaurant bar.  There was another American at another table, trying to pick up a German woman.

She didn’t speak much English, it was clear, so he attempted to connect by… getting louder.  As if raising his voice could overcome their lack of common language.

I ran into a couple of interesting articles today, each about building connection with people in our care.

In Getting Into Their Heads, Carol Bradley Bursack encourages caregivers to refrain from arguing with those in our care who live with dementia.  She encourages rolling with delusions where practical, building a bridge to the caree’s reality,  in one case buying a particular school’s class ring for her dad, who believed he’d lost his (he’d never had one in the first place).  She writes,

This is only one example of the effect of not arguing about “facts” with someone who has a different view of facts than you have. To someone with dementia, what they believe is just as true as what you and I believe to be true is to us.

She is quick to acknowledge that this is not always feasible, but still a tool to keep in our kit,

Sometimes…all we can do is try to comfort them and get them through to the next cycle. But why would we want to do that when we don’t have to? Isn’t it easier to agree that the sky is green that day than swear it’s blue? Who does it hurt?

A New York Times piece explores building social connection with people living with autism.  The two professors who combined on it are concerned that people assume limitations rather than explore possibilities:

Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors and, eventually, social withdrawal. As an autistic participant in one study explained: “I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior. There’s a point where you say, ‘To hell with it, it’s impossible to please you people.’”

The danger of being assumed to be socially uninterested is especially acute for the roughly one-third of autistic people who do not use spoken language reliably. Like other autistic people, they behave in ways that get misinterpreted, and they may not be able to correct the record.

For all of us, whether we are socially motivated at any given time depends on much more than our innate predisposition for sociability. It also depends on how we’ve been treated in the past; our ability to tune out distracting sights, sounds, smells, thoughts and feelings; and the attitudes and behaviors of potential social partners.

They are articulating what many agencies call Person Centered Care.  We do well to learn the modes and means of social interaction that work for a particular person and build from there.

Our son with autism uses movie lines (especially lyrics from musicals) to reach out to others, and can be engaged in return by those who “learn his language.”  He is capable of expressive and receptive social communication, but not always on our expected terms.

So, like the GI at the German table, don’t just raise your voice.

Well, unless the person in your care likes yelling.

 

Transitional objects (or, should Power Rangers really “Go, go”?)

So our son with autism has a new bed coming today.

It is a change made at his request.  He managed to verbalize the desire for a new bed in his old room for visits to our house.

We’ve been buying new blankets to replace frayed old familiars.  But here’s where autism and the need for predictability comes in.  Not only are some of these old items like old friends, they have the ability to make change (e.g. a new bed) more agreeable.

20180504_094038The issue at hand is an old Power Rangers blanket.  It is fraying and, while not presently bleeding out fibrous filler, it will soon be in that dryer-clogging-expensive-appliance-wrecking place.

We want to throw it away.  We want to make the new bed a new bed, dang it.

But this is where a person-centered approach is important.  We need to make such a decision Joey’s.  We need to ask Do you want the Power Ranger blanket on your bed or is it all done?  

If he wants it, we honor that.  If it starts to come apart, then we three have the conversation explaining how it is broken and has to go.

We don’t do stuff only to and for Joey, we do it with him.

Voices

Those in our care have values, pleasures and priorities.  As family caregivers, we are often best able to recognize and interpret those to the world should the people in our care have any communication impairments.

But there are many who receive care who are quite able to speak up for their own lives, like this young man,

Seriously, I have a great life!  I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn’t have to jump the fence either time…Surely happiness is worth something?

Sometimes we have to be advocates.  Sometimes we just need to listen, affirm and encourage.

As many Christians around the world observe our Holy Week, we do well to remember that the One we honor and proclaim listens to voices we ignore or shut down,

People were bringing little children to Jesus for him to place his hands on them, but the disciples rebuked them.  When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”  And he took the children in his arms, placed his hands on them and blessed them.  (Mark 10:13-16)

…Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside.  And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!”  And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.”  (Mark 10:46-49)

Jesus walked through our world announcing that no person was inconvenient or unwanted.  He spoke up for the voiceless and heard the cries that others sought to silence.

He still does.

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.

 

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.

 

Stop and stare

Today’s e-mail regarding a residential placement for our 23 year old son with autism:

Unfortunately, from speaking to XXXXX there will not be any pre-move meeting to discuss potential dates to move Joey into YYYYY. This is due to being short staff and not having staff in place at YYYYY to best serve Joey safely. According to XXXXX, staffing should be figured out by mid October I was told.

It was only a few weeks ago that we were given a tour of a place, told we had five days to decide, decided, and then received an offer for him to move in.

Now, the whole thing is

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How about a little One Republic while life’s on hold?

Stop and stare
You start to wonder why you’re here not there
And you’d give anything to get what’s fair
But fair ain’t what you really need
Oh, can you see what I see

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.