coloring outside the lines

Growth attenuation

NPR carried a news story this evening about a Seattle couple's decision to use hormones to supress the growth of their 9 year old daughter.  The daughter, Ashley, is severely disabled and cannot move or speak and is dependent on her family for care.  Fearing she would outgrow their ability to lift and carry her at some point, they have chosen with the support of her doctors to attenuate her growth.

Comment from bloggers can be found here

I have a friend with a daughter, who is now an adult, who faces similar challenges. The daughter needs to be carried, lifted into the car, assisted with toileting, bathing and all of the activities which sustain life. The mother, who is raising her alone, has her own share of health concerns now that she is 60. Her years of being the sole caretaker for her daughter have taken their toll.

I cannot find it in me to censure the parents, who are leading a life few of us could tolerate for a day.  The demands on their finances, their emotional well being and their physical health are enormous. They have made a difficult decision.  I think we need to respect them and honor their commitment to caring for Ashley at home.

The Student Who Wet Her Pants

This headline in our local paper caught my attention this morning:

School drops charges against student who wet her pants

Authorities are dropping a disorderly conduct charge against a 12-year-old special education student who they say deliberately wet her pants at school.

The above comes from an AP story originating in Danville, PA.  I make no claim to know any more about the story than what appears in the press.

The girls mother told the Press Enterprise of Bloomsburg that the girl urinated only because she was frightened by the principal.  Refuting this claim the school officials claim the girl has assaulted staff and uses urination as a weapon.

As the parent of a son who went through the Special Education system, I remember as if it was yesterday, why it was that I couldn't wait for my son to graduate.  In recent years our local school has criminalized more and more behaviors.  Although my son had no record of behavioral problems, during the last few years he spent in High School the threat of finding ourselves with legal problems became an ever increasing concern.

Who is right and who is wrong?  I have no idea.  Do I think calling in the police to solve the problem was a good idea? No I don't. Do I think any problem my son ever had would have been improved by adult authority coming down on him like a sledgehammer? No.

Our local high school in a town of 12,000 people, has a fence around it that makes the school yard look like a prison recreation yard.  One look at the fence and you know the authorities had all they could do not to put razor wire across the top.  You look at it and know they are itching to do it still.

We have also consolidated our schools and sold unused buildings to private owners.  The elementary school a block from my home was sold to an oil and gas exploration firm. I have watched as an ordinary and uninspiring building was converted to a building with architectural integrity and beauty.  It is now inspiring to look at.  As I pass this former school building each day I ask myself, if the community had built a school that was this inspiring to look at and work in would not each of the students have stretched themselves further everyday, would the teachers have come to work inspired to achieve more, and would the humanity of the building asked and expected more of each of us.  Would we have in some way been better people?

Leadership comes in many forms.  I think we are failing ourselves and our children in many ways.  It is easy to call the cops.  It  is much harder to reach within ourselves and expect the best, hope for the best and see the best in others.  To understand and work with the special needs of our children takes a certain combination of tough love and compassion.  Is there a 911 number for love and understanding?

Call Me, If You're Going to Be Late

   

"Call me, if you're going to be late." That and all of the other little points of contact we take for granted between adults as cell phone use becomes the norm, remained illusive for me and my son, a young adult with Down syndrome. The goal of maintaining contact was better achieved in the early days of cell phones, when the buttons were bigger and the functions were few. As the phones became miniaturized and more complex, an  inverse curve of their usefulness to us was drawn. The last cell phone I bought for John was, in reality, for his caretakers. It give us some assurance that if things went amiss, we could talk about it in real time.

I needed to renew my cell phone contract this year .  I dreaded the trip to the store to view an array of Lilliputian phones of ever decreasing value. Then I discovered a perfect product; the Migo with Chaperone (TM) Service.  It is the phone pictured above. It necessitated that I change providers, as it was not available through Cellular One.  It is available through Verizon and information is available on their website.

The phone is marketed to kids.  One look told me this was the exact cell phone John needed, now and probably forever. There are 4 buttons to program with numbers he can call.  In our case :  1. the other family cell phone; 2. our home number; 3. his co-guardian at work and 4. his co-guardian at home.  The red center button comes preprogrammed to 911.  After some serious consideration, we unprogrammed it.  The chance of John hitting it by mistake was too great.  His fingers are quite large and awkward even for the size of this phone. There was also the realization that even if he needed 911 and reached them, they would find his speech unintelligible.  We may yet decide on a more appropriate number for the emergency button, but for now are taking the position we are 4 buttons ahead of where we have ever been.

We will add four laminated,thumbnail pictures corresponding to the numbered buttons to the lanyard that holds the phone. Our early field trials have been 100% successful.  There may be some who object to the youthful appearance of the phone, but John, who will soon be 25, likes its bright, friendly look. John also loves having his own cell phone. He called after leaving a county western concert at the County Fair to tell me he had a wonderful time and that he was on his way home. As we gain confidence in his ability to use the phone, I will no longer have lengthy waits when he is returning from an event and I have to pick him up. 

More importantly, as long as the phone is turned on and if you have purchased the Chaperone (TM) Service, the phone will act as a locator.  The Basic Service will allow you to locate the position of the phone and another level of service will allow you to be notified if the phone leaves a predefined location.  We have purchased the basic Chaperone (TM) Service.

One of the ongoing concerns of parenting a person with Mental Retardation is, if the person is relatively mobile or more mobile than you are, that they will get away from you.  LIke a small child, will they stray while you are trying to make a purchase at the mall?  Will you get separated in a crowd at a large sporting event or concert?  Is it safe to let him go to the rest room on his own? There is always, lurking behind the veneer of everday experience, the fear of the sexual predator; the person who might lure the less wary off into their car. 

The Migo will not make this a perfect world. The Migo is however, a product that seems to have very valuable attributes for persons who find operating more complex cell phones too difficult to master.  The Chaperone (TM) services adds other levels of safety.  I am thrilled to have the product.

I will add as a side note, that as is often the case, I could not get the Department of Human Services to pick up the cost.  We do get a stipend toward our cell phone bill, which is helpful and was an extremely hard won concession. It has been and continues to be my contention that we should both as parents and taxpayers, find ways to use technology to improves the lives of those with disabilities. Finding a cell phone that my son can use dependably will normalize both of our lives and the Chaperone (TM) Service will, I most sincerely hope, provide us with a way to find John if he becomes lost.  It is ultimately, I hope, a way for him to stay in touch so that he will not be tempted to take risks with his personal safety.

Unavoidable Mishaps in Life

It is a perfect storm of anticipation and trepidation.  The decision to go on a road trip, leaving my son on his own after work, is never an easy one.  It has to be a big lure to compensate for the additional work and uncertainty.  Yesterday the lure was huge and I bit.

The underpinnings of a road trip are comparable to planning a military landing by a small, elite, expertly trained advance team. It requires the cooperation of an absolutely dependable person to catch John before any serious system failures can occur at the home base, while I enjoy a peaceful afternoon away from domestic duty. Yesterday tested our planning and execution to the maximum.

Not only did I want to enjoy a visit to a city art gallery, John had plans that were just as important to him; an evening at the Warren County Fair and tickets to a concert by Josh Gracin.  Here then was the plan:  I would leave after John was put on the bus for work.  He had with him the keys to the house, which he has no trouble using. We had reviewed the plan for when he got home.  He would just get himself a cold drink and listen to the radio or read the newspaper until Big John came to help him with his shower and getting ready for the Fair.  There would be plenty of time, we assured him.  He would have between 15 minutes and a half hour on his own, before John could leave work early to assist him.

The parking lot at my house was empty except for my car as we pulled in.  I checked my watch and realized we had made it home earlier than expected.  We were between the time John got out of work and Big John's scheduled arrival. And then through the leaves of the magnolia tree I saw the solitary figure of my son, sitting on the back porch steps, holding the day's mail on his lap, his red lunch box next to him.

"John, why are you sitting on the porch?" I asked through the car window. "I don't have a key to get in the house," he replied. My heart sunk to my toes. Of course he had a key to the house.  I had carefully put it in the zippered compartment of his lunch box, showing him this as I dropped the key in. I told him where to look. "Oh," he said, retrieving the key and opening the door. "Sorry," he said.

There is a point to this story.  John's landing on the home front had been perfectly planned.  I had his cell phone on the kitchen table along with everything else he would need to take with him for his evening out. He could use his new  cell phone to call me and tell me everything was OK. The shower was ready for him to step in.  The backup caretaker was en route and in fact arrived 5 minutes after I did.  How could I anticipate that the slight change in the busing this week, the excitement of the fair combined with the little anxiety over my not being home for him, would blot out the information about where I had put the house key?

And the point of the story is that John did exactly what he had been told over and over to do.  If he came home and I was not there, he was to stay at the house and not worry.  Someone would be there soon.  Somehow that stuck.  He knew Big John was on his way.  And so, I walked calmly to the door, now open for me, and thanked John for staying so calm, for not wandering off, for staying put and for doing what he knew to do.  And the day picked up exactly as it needed to.  John got ready for his shower, Big John arrived in time to find us all going about our business leaving him with unexpected free time to run a few errands, and in the end a good time was had by all.

"I Do" Meets Down Syndrome

For those of us with children with disabilities, Time magazine in its July 24, 2006 edition has just printed the feel good story of the summer, "A Very Special Wedding."

Two very charming and attractive young persons with Down Syndrome, Carolyn Bergeron, 29, and Sujeet Desai, 25, have married declaring "Love can't be stopped by Down syndrome."

A beautiful photo essay can be accessed at the Time.com site showing the details of their two ceremonies honoring their dual faiths, Hindu and United Lutheran Presbyterian.

Lareau in the Park

Perfect summer night in the park and a few years since Lareau played this venue.  It was the perfect feel good event, with young and old joining together in the gathering dusk to listen to some great music and enjoy the evening with a hometown group that's getting some major national attention.

In a world increasingly mass-produced there is something comforting about an evening where the fun is still homemade.  The park events are organized by the Zavinski's, who do it for love, not money, of which there is none. The local Northwest Savings Bank sponsors the bands.  The music is varied and regional, so every one has a chance to hear music they like.

It was especially meaningful to have Larry Lareau, the singer and composer of the band's signature songs, speak in little asides to the crowd, reminding them to "make art however they could, where ever they could.  And to support the arts. That art is in what we do, and in how we dress ourselves and in what we make." That may not be an exact quote, but I think I have come pretty close.

And you have to love a group, which as the concert draws to a close in the comforting darkness, reaches out to the persons with disabilities and the elderly who make up a significant number of those attending these free downtown concerts.  Larry Lareau stepped off the raised stage, mingled with the crowd, shaking hands, singing to his fans, and enjoying those dancing in the open area near the stage.

Lots of Lareau tees in the crowd and the CD and shirt sales looked like they were booming.  A good sign, I think.

Music in the Park

This weekend our community celebrated 10 years of Music in the Park.  Lareau, our local band, which has recently gone national, played to a large, appreciative crowd Saturday night.  As we remarked this morning, we haven't had a big name band from our area since "Ten Thousand Maniacs."  Good luck, Lareau! 

The Singular Music Experience

I never know about other people's lives or perceptions anymore.  I can remember a time when I thought we were all more alike than different.  I don't know when it changed and I determined I was wrong;we are all more different than alike.  So when an administrator at summer music school was commenting on the new consolidated elementary school we are using this year and said one of the former neighborhood schools was an inner city school, I didn't know what she was talking about.  I imagined her to mean that for some improbable reason we had been importing inner city children to our rural community.  Not that they would want to be here in our white bread world or that we would be particularly anxious to adapt to them. But it was rather that we had within our community what she thought of as inner city children.  This in spite of the fact that we have virtually no racial diversity, no city, no real violence let alone a drive by shooting or two, little drug traffic and no abject poverty.

This morning I was standing in the gymnasium of the school listening to the concertmaster of the Erie Philharmonic play his violin made by an Italian craftsman living in England, heard him demonstrate a French bow versus an English Tubbs bow, heard him coax the most exquisite sounds out of his instrument there in the middle of a beautiful summer morning for a roomful of raptly attentive students and teachers.

I reflected on how privileged I have been.  In this small rural community where I have so often been charmed by nearly private performances; Philomel Club on a winter afternoon where the members play and sing so beautifully for one another, the voice of Lareau singing to me over the phone while we talk of this and that, my nephew playing for himself unaware of our presence in the church pew while he mediates between heaven and earth.  I have no idea if this happens in other lives or if we have just had a serendipitous life.  I realized we have been extremely blessed.

Summer Music School Begins

Three weeks of Summer Music School are upon us.  It will be a a frenzy of picture taking and the production of our annual slideshow for the parents on the last day.  This is always hectic, inspiring, and incredibly fun. 

Chicks 2

The second batch of chicks hatch at the farm.  The first batch have made a successful transition to their new home, the chicken coop.