Archive for July, 2019

10 Things Every Child with Autism Wants You to Know

Under the Bed

The Holy Evangelist Luke

From the blog of Father Michael

John Lewis, formerly the Priest

at Saint Luke’s Orthodox Church,

Garden Grove, California: 

Under the Bed

 “I envy Kevin. My brother Kevin thinks God lives under his bed. At least that’s what I heard him say one night.

He was praying out loud in his dark bedroom, and I stopped to listen, “Are you there, God?” he said. “Where are you? Oh, I see. Under the bed…”

I giggled softly and tiptoed off to my own room. Kevin’s unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in.

He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he’s 6-foot-2), there are few ways in which he is an adult.

He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.

I remember wondering if Kevin realizes he is different.

Is he ever dissatisfied with his monotonous life?

Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed.

The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.

He does not seem dissatisfied.

He lopes out to the bus every morning at 7:05, eager for a day of simple work.

He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day’s laundry chores.

And Saturdays-oh, the bliss of Saturdays! That’s the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside.

“That one’s goin’ to Chi-car-go!” Kevin shouts as he claps his hands.

His anticipation is so great he can hardly sleep on Friday nights.

And so goes his world of daily rituals and weekend field trips.

He doesn’t know what it means to be discontented.

His life is simple.

He will never know the entanglements of wealth of power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.

His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it.

He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax.

He is not obsessed with his work or the work of others. His heart is pure.

He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue.

Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God.

Not confined by intellectual reasoning, when he comes to Christ, he comes as a child. Kevin seems to know God – to really be friends with Him in a way that is difficult for an “educated” person to grasp. God seems like his closest companion.

In my moments of doubt and frustrations with my Christianity I envy the security Kevin has in his simple faith.
It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions.

It is then I realize that perhaps he is not the one with the handicap . .. I am. My obligations, my fear, my pride, my circumstances – they all become disabilities when I do not trust them to God’s care.

Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of God.

And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I’ll realize that God heard the simple prayers of a boy who believed that God lived under his bed.

Kevin won’t be surprised at all!” 

 + Archpriest Michael John Lewis +

June 3, 1963 – August 15, 2011

May His Memory Be Eternal

BBC: Don’t Shoot, I’m Disabled

Some persons with disability have communication problems; more of them have these problems in highly stressful situations. When police officers are not instructed how to identify and relate to these individuals, the results can and have been tragic. Consider the case of Alan Trammell, from Milwaukee, Wisconsin. In his case, he was in the shower and wouldn’t be wearing anything that would alert the police that he had these issues. He was tasered 18 times, and he died. To access the article:

 

Don’t Shoot, I’m Disabled

 

 

See also:

 

 

Basic Guidelines of Welcome, by Summer Kinard

What Not to Say to a Friend Experiencing a Mental Health Problem

Invisible Child, by Matushka Wendy Cwiklinski

The name “invisible child” is both a descriptor of and a dedication to our children, who are invisible in the sense that their disabilities, though often severe, are hidden from view. Brain disorders, though biologically based, often are not obvious physically, so the invisible child looks like any other child. In addition, children with these disorders usually have normal intelligence. In fact, many are gifted, sometimes to a high degree, and because of this they are able to develop coping skills that further hide their differences, the result being that they may either not be identified or their struggles will be misunderstood. Because it typically takes such a long time for children to be diagnosed and receive appropriate treatment, they are particularly susceptible to falling through the cracks, dropping out of school, becoming suicidal, or entering the juvenile justice system.

 InvisibleChild.org

An article by Matushka Wendy Cwiklinski, which can be found in its entirety in the Orthodox websites section. She speaks as a mother of a number of children with invisible disabilities:

Church and the Child with Invisible Disabilities

When persons with blindness, or in wheelchairs, or with Downs Syndrome features come to our Church, its easy to identify them as people to help. But its a little harder to see them as people who can help. And its much harder to see, as Matushka Wendy writes, children with invisible disabilities, who look like everybody else, as image-bearers of Christ who just need  extra patience. The article and the website are a good place to start educating one’s self toward this goal.

See Also Matushka Wendy’s Master’s Thesis: Embracing All God’s Children: Orthodox Theology Concerning Disability and Its Implications for Ministry with Special Needs Youth in the Orthodox Church by Wendy Cwiklinski, 68 pp.

reprinted from January 2007 with edits

You Tube: Cystic fibrosis activist dies aged 21


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