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.

Autism, Epilepsy, and the one-in-three chance of ‘Both’

This dad brings up the statistically significant overlap of autism and epilepsy. I remember my son’s first seizure – the crash, the thrashing and then utter stillness. I thought I’d watched him die. I still flinch at the gym when when one of the big guys drops his weights at the end of a set – that sound…

The Additional Needs Blogfather

Epilepsy Awareness Day, or ‘Purple Day’, is on the 26th March, and this will be the first ‘Purple Day’ since James, our 15-year-old son, added Epilepsy to his growing list of conditions that already included Autism and Learning Disability…

It’s been quite a year, quite a journey, as we’ve rapidly learned about a condition that we knew very little about before.  But let’s start at the beginning, mid-March about a year ago, when something “unusual” happened with James at school…  I remember the ‘phone call well, it was early afternoon and I was at a work meeting about 100 miles away from home.  In the middle of the meeting my mobile ‘phone rang, the name of James’ school showing as the caller; I apologised to my colleagues and rushed out of the room to take the call.

“Something unusual happened with James just now”, the teacher…

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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.

 

I’m no Mary, he sure ain’t no Jesus…

When Joey was a toddler and we were at camp, the thought flooded my head like perfectly heated steam, while the sun poured into my skin like soft lotion. Some distant, bitter stranger, more like a stick-figure with a disproportionate index finger pointing at me was saying “That is blasphemy, you fool and you will writhe in the pit of Godless Hell.” My conscience made no sense of that brittle, screeching thing.

My thought was that Joey was Jesus and I was Mary. Well, not really. It was more like it felt so perfect, that the love was so pure that it had to be the same love. I thought of my other two children. Did I love them less? I loved them as much, no second thought. Immaculate Conception? Did any reader who barely knows me remain in their chair at that thought? Lastly, Joey had never spoken but one word: “tickle,” and at the time I did not know he would not begin to speak until he was almost five years old. Nothing exceptional about either of us, to the outside world, rather unnoticeable unless misbehaving. 

Misbehaving? I shall not digress much but a doctor has mended a gash in my cornea after one of Joey’s meltdowns. As for me, it took a couple of exceedingly large women walking slowly, diagonally across a mall parking lot, no crosswalk, not looking, got an earful from me and yes, I was sober. To my husband’s chagrin, I was shotgun. 

Back to camp. Joey was 2 years old. He had been diagnosed with severe autism 2 months earlier. Out here in the open, running, clapping or flapping his hands in the fresh-cut grass, he had very few sensory issues. An “older” mother, I was 41.

Now I am almost 62, Joey is 24 and I am thinking perhaps God needed me to love him as deeply as Mary loved Jesus to get through the years of violence and injury he brought, mostly to me because I was physically the weakest, emotionally the most vulnerable, and although autistic, he was smart-enough to know it.

And if that was not enough there were the “outsiders:” every  wise-ass parent who saw a neuro-typical looking child like mine behaving badly and concluded it was my bad parenting, or the parent of another autistic child who had all the answers… I should not have immunized him as I did my other 2, I should have spent tens of thousands of dollars for some amazing camp run by people who looked like the people who used to hang at Haight-Ashbury which would “cure” him. Lastly, the 6-figure paid government employees who knew nothing about education but decided what kind of help my son and other children like him would not receive. Those meetings were tortuous hours.

I still feel the overpowering love that I can only guess Mary felt for Jesus, who was helpless to the world. Of course it is completely different. Of course it is not.

 

I’m a little teapot…

Melissa and I just bought  this whistling teapot:

20180308_072440

Her social media comment says it all.

The autistic kid moves, the tea kettle whistles after 22 years

We’ve chronicled some of the sensory issues that bedeviled Joey and through him the whole family.  We had to banish whistling teapots from our home for 22 years because the sound distressed him to the point of meltdown.

Hey, it wasn’t all bad.  I mean, I had plenty of opportunities to avoid cleaning the house because the sound of a vacuum put him over the edge.

But the little blue teapot is another sign of our lives being liberated from the concessions, adaptations and drudgeries of care giving.

Hang in there, wherever you are on the care giving journey.  I’ve been slogging through the Biblical Prophet Ezekiel.  The first 39 chapters are a gloomy tale of people living in exile, familiar life erased.

Then one day life starts to come back together.