support for families of special needs people

Teach to the Test

wystansimons2 Comments

Famous stories have been written about parents who had to make painful choices, to keep their children safe. Sophie’s Choice, the blockbuster 1980s film comes to mind. The female protagonist must choose between her two children, forced by a Nazi guard for the purposes of his own amusement. She is made to choose only one child to escape from the train to a concentration camp. (Sophie’s Choice clip) It is hard to watch. It’s like she’s given a test but crumples under the pressure. A non-hero

I would like to think that I would never make such a choice. I would not permit someone to have power over me or my child, to make me do something — to hurt a psyche to save a body.

But life is complicated.

It’s true that everything that Edward and I have done in the past five years on behalf of Owen has been with the purpose of helping him claim his voice. We have pushed back on the nay-sayers, tried to manifest the intelligence that hides under his dysregulated body. Every effort of the organization Real Voices of Philly is for that same purpose: to help ALL non-speakers, as many as we can connect with, to access educational and cultural opportunities. Even if that voice is via the criticized and admittedly imperfect method of pushing through reverse pressure to point at letters on a card or to press keys on a keyboard, to make their thoughts heard.

And yet this month we will ask Owen to betray himself. We have learned that in order to get a waiver for support from the state of Pennsylvania, Owen must subject himself to an IQ test, the soul purpose of which is to prove him incapable of higher thought. Only an autistic who is mentally incapable can receive this financial aid.

I hate it. I hate this ignorant, demeaning law, that forces non- speakers to either misrepresent themselves or to not receive the governmental support that many desperately need. I hate the bullying, officious governmental system that can control lives this way. But the law has the power. Owen and his friends have none. Intensely frustrating as it is the situation will not change quickly. Edward is handling it; I could never bear to do it.

Why need an autist be mentally incapable to receive assistance with their physical disabilities?

Getting this waiver will allow Owen financial support from the federal government, although not enough money to cover his basic needs even for a low quality adult home. Our lawyer says we absolutely must do it. This can provide the basic care, and we can focus on the quality of life stuff, so that he is not medicated into a stupor, left standing in the corner of a group home, twisting plastic in an agony of boredom, 24/7. We already experienced some of this, in the adult daycare Owen endured Maryland. I thought the people were nice… How could I know? And I didn’t know what else to do.

Owen is lucky that we are able to provide the financial support that will make a difference.  We plan to provide him trained communication partners (CRPs), that education will continue all his life, including trips to the art museum as well as the hikes that he loves. And hopefully it also provides oversight to prevent abuse or negligence that is rampant in programs and homes.

We have talked about creating a home for a few non-speakers, a group of young men who share Owen’s passion for learning. And then, once that is going, I want to do it again. And again. And again.

Maybe creating safe worlds for these special people — really beautiful homes for people usually assigned the dregs, lives of unexpected cultural richness and dignity — will remove some of the bitterness I feel, at being forced continuously to play by rules that are false measures of reality.  Let us break those chains created by ignorant “specialists,” and blind “experts,” chains that hold bright minds in bondage. (Read the novel In Two Worlds by Ido Kedar. You will be glad you did).

Owen writes: “It is sad that we have to lie to get the help we need.”

Thank God for those who are curious, who ask questions, who want to know. Because the true measure of a human being is a difficult measurement to get.

Post Script:

This post is dedicated to my uncle, Robert A. Smith of Glenview Illinois, who passed away on January 16, 2024. He was a man who looked for a way to connect with people, to lift people up. It seems that he tried to make the world a little brighter, either by a word or deed, for anyone he came across. I didn’t know my uncle very well, and I would have said that we were very different sorts of people. But as I finish this post, I recognize him as a mentor. Bob Smith’s generosity, his rather intense commitment to making the world a better place, and his willingness to roll up his sleeves and “do something about it” are a powerful role model in POSSIBILITY. With gratefulness — I had no idea how much I owe you until you were gone.

Honestly Lying

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Estate LindHolm (home of limes), St John, USVI

I am a poor liar. So, I might as well confess upfront that this weekend Edward and I have flown far from snow drifts to warm weather.  The fact that we needed respite badly does not mean we deserved it. What does”deserve” mean? We all need it.

Owen wholeheartedly agrees with any guilt I have, and he let me know that it was totally unfair. He pointed out that he has missed out on so many trips. It’s true. He was pretty bitter to be left behind, and also anxious that we might not return but leave him there, in the apartment that isn’t home, coping with a Pennsylvanian winter.

His parents are thawing. Uncoiling. Reading about sea turtles. Heartlessly writing in the sunshine by the pool, or snorkeling in the bay.

Even so, the ties that bind humans to each other and to their work are powerful and mysterious forces. We found ourselves standing at the waters edge on a beautiful beach, in lively conversation with a special ed teacher from St Thomas and a speech pathologist who serves the entire Virgin Islands. These dynamic women impressed us, committed to their work, serving an underserved population.

What also impressed me was that hearing the story of Owen’s voice emerging from silence through supported communication delighted them. They rejoiced.

This is not the common response among speech professionals of America. ASHA (the American Speech-Language-Hearing Association) has officially come out against supported communication. Plenty of other bright minds see it as a lie too. Consider Amy  Lutz, an author and mother of a young man with profound autism and movement dysfunction. Lutz is a doctoral candidate at UPenn, out to prove that supported communication is a hoax. Her research involves pretending to families to be interested, and under the guise of interest observing them in their homes. Sadly she cannot see the independent movements that supporters feel. Owen started out supported at the hand. Now he can at times write supported at the elbow! But he had to start somewhere.

But even those who honestly believe they accept the premise of the split between Owen’s autistic behaviors and his true intentions, find themselves uncomfortable in that space. Doubt or disbelief do not surprise me.  Even at the best of times we humans have a hard time listening to each other. When  the motor system, at the mercy of lower brain anxiety, is at war with the upper brain, whether the diagnosis is autism, cerebral palsy, or stroke, it’s a lot harder. If this guy can control some movement, why not all of them? How can you move “unintentionally”? I hope science finds more answers.

Reflecting on inconsistent ability to move body parts, reminds me of a friend of ours. She told us she has first hand experience of what it feels like to be Owen after experiencing a stroke. She named one of her arms “she” because it would sometimes move unbidden, doing its own thing without permission. “Variable control” you could call it.

how do you firmly guard your soda bottle against mounted attack while conversing to (rather than about, or over the head of) the person in front of you, who is grabbing for it?  And who shows no visible signs of being interested in anything you are saying?

So much easier to look away or to change the subject or leave, than to stand calmly, as our mason John Reagan did when meeting Owen last month. Owen had been thrashing around the house we are renovating, violently kicking the trashcans, likely because it is disturbing to see this house all torn up, still all torn up, but also because trash cans in general are his nemesis. Whatever their cause, the behaviors are exhausting to both of us, and I proposed saying “hi” to John on the way out the door. 

I hardly needed to prompt his arm though, since Owen reached out toward John immediately, arm up and fingers forward in a salute that he uses sometimes with new people.  Sort of like E.T.  And John stopped smoothing  cement, and looked up into Owen’s eyes and smiled and helloed back.  His energy seemed completely relaxed. If he was faking he was really good at it, he seemed at peace. I loved that moment; it set me up for a week.

It has to be satisfying to finally let people know some tiny portion of the million thoughts and dreams pent up inside you. But it is clearly also pretty frustrating, like trying to run Niagra Falls through a pin hole. And the irony is that if you can speak, then you have the ability to lie. Apparently discovering that you can tell a story and make waves makes a nice change from powerlessness.  Other caregivers of spellers and typers have lots of stories of lying, I discovered. It’s a phenomenon.


I remember the shock of the first time Owen told me a lie, and the greater shock when he told a lie about me.  “Why would you do that?” I gasped, “that’s your voice!!”

It is his voice. That’s the point, isn’t it.

And this very autonomy that we sought for our children in the first place may be one part of the explanation for the failure to prove it is happening at all. Maybe it parley explains why the attempts to test supported typers and spellers have created damning, inconclusive, or confusing results.  A bright mind that can communicate can be witty, can speak with double entendre. Or sarcasm.

If you can speak, you can lie.

Although, honestly, telling the unvarnished truth can be just as hard to take.



ST. JOHN


Going away

My parents are going to St. John
It is really warm and beautiful there
I want to go too

I would play in the sea
And lie on the beach
I would look at the clouds
And the palm trees
Birds would dive and soar

I can’t go and mom and dad
Are leaving me in the snow
I will be cold here with Trumbull
Just hoping they come back

Please take me with you
But if you don’t

Please come home

Owen Simons  
2/23/21

Peter Bay beach, St John

Dinner

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A lot to digest…

Much like the snake I photographed in the chicken run a few weeks ago, (find Part 1 at suburbangrowing.com)  the human folks at our house have been working our way through a big meal this fall. Speaking only for myself, in September I wasn’t able to write or do much else of real meat (haha), besides eat, breathe, sleep, and process. Me and the snake. Thank goodness the surgery date is moved up into October, and so we can get through quicker.  It’s “really just a blip on the way to the rest of your life” as my mother-in-law put it, bless her, I hope so. The footage of snake working its jaws around bird is a graphic if gory presentation of the job at hand. Feathers and all. Feet last. Once you get all the information downloaded, which is worth taking your time about, you still need to come to terms with it, and that also takes time. The correspondence is complete, even to the fact that this experience of having cancer is a kind of a meal, something I will grow from going through, and be enriched by. Although I guess that’s up to me.

Owen may be affected by the vibes, or just doing an unusually busy stage of his own development. Lately, he’s been showing affiliation with his Nordic ancestry and leaving warm bed or hot bath for the cool of the brick patio backyard, where he will stand chopping plastic at the table until he feels sufficiently chilled.  Or until I go look for him. He has figured out how to operate the deadbolt on the back door to  achieve early morning freedom. But since there are plenty of shrubs around the property lines to screen him, this seems like a decision he should be allowed to make.

Owen appears fed up with being “directed” these days. And given that most of his hours he is being directed, or pushed or hurried, a little early morning nudity may be just what he needs. If only all his problem behaviors were so easy to deal with. Thank goodness for our homeopathic doctor. I really don’t care if it’s voodoo or what, but the remedy (three little pills of a dilute substance in a sugar pellet) he gave to Owen seems to be calming down his prickly irritability and mulishness.

The night-time care of Owen is another matter, and Edward and I are reaching our limit. Trying to imagine what Stage 2 of Caring for Owen might look like has been keeping me awake at night as much as Owen himself.  How can I make space for Owen to be Owen, and have a life and keep a sense of humor, as I go forward toward 60 and Edward toward 70?  How will we find the care we need for him? And if we do find it, how will I let him go from our house into the care of strangers? How do I send my son away? What kind of life will he have? The need for help is a palpable as the sadness that threatens to choke me. This is a meal to manage in tiny bites. Thank goodness for Owen’s county resources coordinator Nicole Chittams, a woman of great heart and also great practicality and many resources, who has some answers to some of those questions.

My surgery is set up for October 18th. Family and friends have rallied to help out. It turns out things are not going to be as difficult as I thought at first. Where I thought twin mastectomies were called for, it turns out that lumpectomies will do just as well, and maybe better.   I have leaned that for many women Radiation is not the problem for every woman it can be for some (I heard a bad story).  It is possible that I may not need chemo. The best news of all is my own realization that I will come out of this cranky, stiff, and sore true, but still feeling like me. And since mostly I like my me this is a relief. After a September of digesting, on to an October of adaptation.

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Our black caps – fruit from prickles

 

 

 

 

 

 

 

 

New Year’s Acknowledgements

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Many friends and relatives have been very kind in supporting of my writing endeavors. But unknown to all, it is really the woman at the cash register of my health food store who keeps me writing. When in a slump, or distracted from my writing by life’s madness, sooner or later I know I will have to face her, as I send my groceries down the conveyor belt to be rung up and bagged.

“I haven’t heard anything from you for a while,” Sherrie admonished once.

Oh the shame. Keeping to schedules has never been a strength of mine.

The next time we met over the heads of kale and vitamin bottles, I mumbled something about it being pretty hard to find anything anything positive to write about Owen lately, he’s been difficult.

“Oh but you always do,” Sherrie smiled, warm, unapologetic.  Sherrie is a big fan of Owen’s adventures.

I left fortified with better things than vitamin pills.

Surely every artist must have a Sherrie.  That first person whom they know in no other way but through their art, the stranger who says those bolstering words, “I just love the way you write!”

Caring for Owen is a profound experience. As the last of his siblings returned to college this week, and Edward left for the west coast for the week on business, leaving Owen and me eyeball to eyeball, I am more conscious of the sweetness that Owen brings to my life than usual. And by that I do not mean the juice he splattered all over the floors yesterday cramming oranges into his mouth as fast as he could before I got downstairs to catch him. No, I mean something a tad more lofty. It has to do with seeing, with focus. Have you noticed that spiritual teachers seem to show up, disguised as the difficult people and the painful experiences of life?  Then there seem to be other people, wonderful mentors who show up to help one digest it all, and prod us to do something useful with all we have learned.  Owen has had his turn at both, though he seems to prefer the first role.

But today I want to acknowledge the woman behind the cash register. Without that prodding, the writing I do might never reach the light of day.  Thank you, Sherrie, for holding my feet to the fire. And yes, I will get back to work.