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Archive for May, 2011

A Parent’s Life|Thinking, Worrying + Actions

Egret
Creative Commons License photo credit: Elliotphotos

This morning I saw an egret in our garden.

It stood majestically with its head tilted upward and its slender white body contrasting with the green of the newly planted tomato plants.

The bird looked around for a long minute, and then flew away.

Wait! An egret? This isn’t Florida or South Carolina. The ocean is a thousand miles away.

It got me thinking:

How did an egret end up in our garden? Was there a transportation glitch? Will s/he be back tomorrow? Does an egret worry? How does s/he solve problems?

Thinking, Worrying and ACTION

Like many parents of people with disabilities, I spend most of my days trying to see the world from my son Aaron’s point of view.

Thinking and trying to problem solve;

Worrying I won’t find an answer in time to help Aaron.

Now, I don’t stop there.

After my thinking and worrying,

I take ACTIONS to solve the problems, one step at a time.

This is a full time job. One I didn’t want, one I didn’t plan for, one I have to do every day.

Last week’s problem: Aaron’s 3.5 hour daily Van Ride.

Thinking and Worrying:

Will Aaron have a 90 minute ride today (the legal limit for one way)?

Or, will he and the other 5 people have to sit in the van and wait (and the van ride will actually be 110 minutes) because the staff is too irresponsible to open the doors on time?

Will Aaron chew the collar on his shirt to shreds in the 90-110 van ride? (I have had to buy him a new coat each of the last 3 weeks, he was actually spitting out the metal zipper pieces on one coat.)

Will he bite his hand and draw blood while he is frustrated?

Will he have to go to the bathroom? Have an accident? Get constipated because he is holding it for the 4 hours a day he spends in the van?

Will the van driver sing to him if he starts to get agitated? Will the van driver write Aaron up as a behavior problem?

Will the other people in the van get upset?

Will it be too hot in the van? Too cold?

Last week’s immediate ACTION

Ecological Inventory

I comfort myself that Aaron likes van rides, and Bruce, the van driver, seems to care about him.

After I had my thoughts together, I checked the documentation on the pick-ups/delivery times (the daily chart/notebook I wrote into the ISP), analyzed Aaron’s van behaviors, talked with the staff at both Aaron’s house and day program, made several phone calls, wrote a couple emails about the problem, found out a couple key people were on vacation, make a couple more phone calls….

Immediate Solutions I hoping for:

1. The staff of the day hab center (drop off point) now open their doors on time–removing the extra 15 minute wait time.

2. The van is repaired (storm damage) for our new Goodwill/Easter Seals program and available to pick up Aaron.

3. Aaron won’t have to be on the other van at all with the 5 other people.

4. Aaron will get a direct route to his new program which is 21 miles away, reducing his 4 hour daily ride to 2 hours.

“For every action there is a reaction.”

Long Term Solutions for the Transportation Problem

In the next few weeks, I’m hoping the van for the Goodwill/Easter Seals program is repaired from storm damage and will transport Aaron.

I know the never-ending cycle of thinking-worrying-actions will repeat:

Will the new van driver be as good as Bruce? Will s/he care about Aaron?

Since Aaron and his housemate will be taking different vans, the residential staff will have two different pick-up/drop-off times. They don’t have autism, but they don’t do well with change. (Little humor there.)

A shorter van ride for Aaron means the home staff will have to adjust their work schedules and add an extra half hour in the morning and evening. They will see this as Aaron messing with their day. Since they get paid by the shift, not hour—no extra pay, just an extra hour of responsibility.

I know, I know… I can hear many of you saying: “They work for Aaron, they should do what is best for him.” And, you are right. That is the bottom line and the reason Aaron will have the more direct, shorter route. But that doesn’t mean they will like it, or do it with a smile.

Short-term and Long-term Problems

Each day, I work a little on the long-term solution to Aaron’s residential staff issues. Some problems can be addressed in a week, unfortunately, others take years.

I have written about some of the residential issues before: Our house of cards| Disability style (Part 3) and “It’s not my job.”| Caregivers (Part 3)

And, while I can pull a Scarlett O’Hara and say, “I’ll think about that tomorrow.” My child is waiting for me to fix this.

If I don’t do it, no one will do it.

A Parent’s Life:

I’m writing this because I want to believe the egret was a “sign.”
I want to think the wonder of the unexpected, the unusual, the beautiful will help me focus on the good, so I can stop thinking and worrying about Aaron and the bad things that still need action.

Live for Today

I tell myself—quit thinking and worrying. Just enjoy! Just remember the sight of this regal bird and the unexpected pleasure it brought.

I remind myself–that’s enough thinking and worrying today. Get a cup of tea; take a bath; read a book with a happy-ever-after …and thank God for an egret.

Because even after you finish your thinking and worrying about the transportation issue, there is still the issue that one of the staff people doesn’t give Aaron a bath every night…and the million of other issues that need action.

There will ALWAYS be more battles to fight.

There will not always be more days to just enjoy life.

Maybe my advocacy actions will give Aaron a shorter, safer ride to his day program. And maybe I’ll be able to chip away at the residential problems, and maybe Aaron will get a bath tonight.

I can’t fly away like the egret.

But, maybe today I can stop thinking and worrying–at least for a few moments. And maybe that is the exact ACTION I need.

Your Turn:

In the comments tell us: What are you thinking about? Do you wish you could fly away from your problems? Have you seen something today that was unexpected and brought joy? Do you think and worry? Or, do you think, worry and–take action?

Keep Climbing: Onward and Upward.
All my best,

Mary

Quote: “You can always tell a mother. She’s the one who wears her heart on the outside of her body.”

Bulletin Board| Autism, Wretches & Jabberers May 12, Lapointe, Medicaid Cuts, ADA

READING THE NEWS in OLD CHINA --  Hats and Hairstyles of All Descriptions
Creative Commons License photo credit: Okinawa Soba

Bulletin Board #4

Wretches and Jabberers 100 cities tour on May 12th

Find a city near you and don’t miss this exciting movie about two men who are changing the world for people with autism. Click for cities and ticket information

For related posts on autism, communication and Wretches and Jabberers:

Wretches and Jabberers Review: A jab to the heart.

I’ve spent a lifetime trying to get in touch| Wretches and Jabberers (2)

I love Aaron| I hate Autism

Autism Awareness Day| Direct Action is Better

The Right to Communicate (2)| We are the experts

What if? | Bob Williams

Disability Advocates Arrested over Budget Cuts in Medicaid

For those of us who care about people having the choice to live in the community and not in nursing homes, ADAPT members are marching and being arrested for all of us. See related story

Disability Law Handbook – Available in English and Spanish

The Disability Law Handbook is written in FAQ format and answers questions about the ADA, the ADA Amendments Act, the Rehabilitation Act, Social Security, the Air Carrier Access Act, the Individuals with Disabilities Education Act, the Civil Rights of Institutionalized Persons Act, and the Fair Housing Act Amendments.

Free copies may be downloaded or viewed ADA for the Spanish version and ADA for the English version.

To locate your local ADA Center go to www.adata.org

Does the life of one man with an intellectual disability matter?

Our friend Bob Perske sends this update to the story about Richard Lapointe. See previous articles here:

Unequal Justice

Hope for the Families

At Least Investigate Other Suspect In Lapointe Case
Lapointe Case With DNA findings, state should revisit an earlier suspect

April 19, 2011 Editorial (click here for original story)

If the term “reasonable doubt” means anything, Richard Lapointe should get a new trial. The meek, uncoordinated, mentally handicapped Manchester man was convicted of a violent crime he may not even have been able to commit, based on confessions of highly dubious merit.

But his efforts to have his case retried suffered another setback Friday when Superior Court Judge John J. Nazzaro rejected arguments that prosecutors had withheld important evidence, that Lapointe’s trial and appellate lawyers were incompetent and that new evidence proved Mr. Lapointe was innocent.

It can’t end here. The Lapointe case has seriously shaken confidence in the state’s criminal justice system. Officials should take a step to restore that trust, and that is to run tests on the other major suspect in the case.

Coerced Confession?

Mr. Lapointe was convicted in 1992 of the brutal rape and murder of his wife’s grandmother, 88-year-old Bernice Martin, in 1987. He wasn’t arrested until 1989; police were first interested in another suspect, a grisly career criminal named Frederick Rodney Merrill. But Merrill was eventually dropped as a suspect, at least in part because his blood type didn’t match a blood and a semen stain at the scene.

Mr. Lapointe, a dishwasher with no history of violent behavior, had been asking Manchester police officers about the case, and eventually drew their suspicion. On the Fourth of July in 1989, the police asked Mr. Lapointe to come down to headquarters and kept him there for more than nine hours. He didn’t have a lawyer and the session was not electronically recorded. Over the course of the evening Mr. Lapointe gave three confessions that were either nonsensical or didn’t jibe in major detail — how Mrs. Martin was dressed, how she was sexually assaulted, how she was strangled — with how experts later said the crime was actually committed.

Yet jury members said after the 1992 trial that it was the confessions that convinced them of Mr. Lapointe’s guilt. Since 1992, much has been learned about false or induced confessions; they happen with alarming frequency. Mr. Lapointe, alone and tired, said he told police what they wanted to hear so he could go to the bathroom and go home.

Tantalizing Evidence

Whoever killed Mrs. Martin was physically strong. He violently assaulted, tied up, raped and stabbed a woman who was short and weighed at least 160 pounds. Mr. Lapointe can barely tie his shoes, and has trouble lifting heavy objects. He has to keep checking and adjusting a shunt tube that extends from his skull through his neck and into his stomach that drains fluid from his cranial cavity, a result of his mental condition, called Dandy-Walker syndrome. But if he didn’t commit the crime, who did?

There is tantalizing evidence that Manchester police had the right man the first time.

A Manchester woman testified she saw a man much taller than Mr. Lapointe — about Mr. Merrill’s size and build — running madly from the housing complex where Mr. Martin lived at about the time of the crime. Mr. Merrill was seen in the neighborhood that weekend, and three days later committed an eerily similar crime, a violent sexual assault on a woman in her home in South Windsor, just a few miles away.

In the most recent appeal, lawyers for Mr. Lapointe presented DNA evidence that a pubic hair found in Mrs. Martin’s bedroom belonged neither to Mrs. Martin nor Mr. Lapointe, and that a pair of gloves found at the scene could not be tied by DNA to Mr. Lapointe. Although Judge Nazzaro didn’t find this evidence strong enough to grant Mr. Lapointe a new trial, for a number of reasons, he did allow that the pubic hair “may have come from the perpetrator.”

Well, let’s at least find out if the hair and other items found in the apartment are a DNA match with Mr. Merrill. Such action would not be unprecedented. In recent years state’s attorneys have voluntarily reanalyzed evidence in at least three cases in which convictions were reversed. The questions surrounding Mr. Lapointe’s case argue for a similar review.

Copyright © 2011, The Hartford Courant

Comments:

Please share your thoughts in the comments and social media of Twitter and Facebook. There are some amazing stories here.

The success of a movie about two men with autism who are telling their stories and inspiring all of us.

The Richard Lapointe issues of justice and freedom.

The story about self-advocates fighting for Medicaid and their rights to live in the community.

What are your issues? What would you be willing to go to jail for?

Favorite Quotes:

“Our lives begin to end the day we become silent about things that matter.” Martin Luther King Jr.

“A small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has.” Margaret Mead