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Archive for the ‘Patrick’ Category

One year I asked my kids to make me something, instead of buy me something. And that something had to be about themselves, express who they were, and how they felt. I got the idea from an artist and teacher who was one of my customers.

When I cleaned the windows at her home, I would notice all this incredible artwork and would assume it was hers, but she told me that a lot of it was by her sons and her husband. She asked them to create artwork that somehow expressed who they were. She’d been doing it for Christmas for years. The art was often faces but not all and was quite expressive and interesting. Her husband told me he worked on his for months.

That Christmas my two younger children made me self portraits. Fourteen-year-old Madeleine’s was dark, thoughtful, and intense.  Ten-year-old Brian’s was a big, yellow smiley face that probably took him all of ten minutes on the computer.

Patrick, my autistic son, who was 17 at the time, wrote me this poem:

On a wind swept field
          In the far reaches of a mind
                    Lurks a shadow
                              In that shadow
                                         A notion

  As sure as the rhythm of waves on an ocean
            What field?
                     What mind?
                              What shadow?
                                       What notion?
  Guess!

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Patrick, (see previous post) communicates by means of Facilitated Communication.  It is a form of communication first discovered in Australia by Rosemary Crossley, who was using it with people with cerebral palsy.

 It occurred to her, having worked with severely autistic people who seem oddly alert and intelligent yet do not communicate except in the most fundamental ways, that it might work with them.  It did.  These people turned out to be quite interested in communicating, but never had the means.

 A facilitator enables another with a disability to communicate by providing support to the hand or arm, giving a person more motor control.  They support the hand loosely enough to allow the person to select keys on a keyboard then help them draw their hand back.

 The technique made its way to the states and eventually to Benhaven where Patrick’s program was.  The speech therapists chose to try it on the autistics who carried around books and magazines.

 Patrick always did so, so he was one of the first.  Initially he was very fearful about making contact.  The therapist had to bribe him with ginger snaps.  His early communications were very tentative, Ys and Ns for yes and no.  As time went on, they discovered that Patrick knew how to read and spell.  He’d taught himself.

 The affect (facial expression showing emotion) of autistic people is fairly bland.  The expressions on their faces change little except in extreme duress or when very happy.  A clue that there was more there than met the eye was Patrick often laughed.  One of his teachers thought that he sometimes laughed at the staff’s jokes, though she wasn’t sure.  Patrick was diagnosed as severely autistic.  We didn’t know if Patrick understood anything we said.  One psychiatrist said Patrick probably was only aware of certain basic feelings and physical sensations.  Another doctor who evaluated Patrick recommended that he be institutionalized because he had at best intelligence of a four year old. We didn’t agree, but we didn’t know anything for sure.

 Patrick soon went from Ys and Ns to yes and no, then short phrases, sentences, and then full paragraphs.  Eventually he went to school with an aide to help him with his general needs and to facilitate with him.

 We never knew how Patrick felt about us before he started communicating with FC.  We knew he liked us, we could tell from his mild expressions of enjoyment, but we also saw these same expressions when he was around his teachers.  His first real communication to us came after a couple months of his working with the speech therapist on the keyboard.

 He typed that he loved us and that he liked chocolate chip cookies.

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We’ve been watching a lot of the Olympics lately, the Luge, figure and speed skating, hockey, downhill skiing and snowboarding. The Olympians seem almost superhuman in their strength, agility, and endurance. Patrick, my 29-year-old, autistic son, will never be in the Olympics.  He’ll probably never be in the Special Olympics either. He may never do a lot of things like get a paying job, get  married, drive a car, or even talk.  Yet he doesn’t fall short as a human being.

 On the contrary, he is a wonderfully lovable, caring person.  His main joys in life are his interactions with family, caregivers, and friends; hiking in the outdoors; and, of course, eating ice cream.  I do not think he spends his days worrying about whether he’ll ever succeed in any worldly sense.

 When asked if he is envious of the gold medal winners or any of the Olympic athletes, he typed, “No, Dad, I am happy.”

 Once I asked him what makes him happy, he typed, “You make me happy.”

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