Sunday, October 30, 2011

Happy Halloween from Ben!

I'm not sure if I mentioned that Ben went to his high school Halloween dance on Friday night. Apparently a group of girls asked him to dance, so he did. Ben transferred to a regular high school in our board in September. It has a deaf/hard of hearing program where the students have some classes on a separate unit and others in the mainstream with interpreters. I just received this message from the head of the program. She sent it to all of his teachers and the principal:

"Ben was our one and only DHH student who showed up to the Halloween dance! His costume was totally awesome! The best! He's got guts! I am so very proud of him! He is one remarkable young man who is displaying his spirit to the fullest."

Silent Sunday

Saturday, October 29, 2011

Book series brings Madi to life

I LOVED Sarah Leal's first children's book -- So Don't! And See What Happens. She just released a third -- The Cottage Tooth Fairy -- and is working on a fourth. One of the main characters in this series is Madi -- a girl with cerebral palsy who uses a voice device. Madi is based on Sarah's daughter Madi, now 15, who lives with Sarah and her husband Luis in Guelph, Ontario. I asked Sarah why she started this series and why it would be of interest to families of children with disabilities. Here's what she had to say:

I started writing this series when my daughter Madi was little. She had SO MANY appointments and we had to wait in many a waiting room so we would bring a ton of books and read and read and read. After reading the same stories over and over I started to change up the character names to match Madi's friends and family. Then I started to change the stories too. As Madi got older I looked to buy books with a main character with a disability who was hopefully non-verbal -- but had no luck. The only books that I found seemed rather "educational" and that was not what I wanted. I decided that there was a spot for me in the writing world, and that was how I got started writing my books.

All of my stories come from a part of our real life. Then I shape them and sprinkle in some fun. The Cottage Tooth Fairy comes from a real toboggan ride that my husband Luis and Madi took. It resulted in the loss of Madi's first molar and Luis being scolded for not holding on tight enough. LOL! This story has Madi and her fictitious brother Colin finding out what happens when you lose a tooth at the cottage. Childhood hijinks to trick the Tooth Fairy result in a whopper of a problem, and some rather angry cottage wildlife.

My books give an opportunity for a child with a disability to relate to the story without being centred out. Peers can enjoy a story that supports acceptance -- again without being told explicitly.

My books can be shared with peers and educators who are involved in your child's life. Other students may look at their classmate differently when they realize that people with disabilities live lives just like theirs.

One day when Madi was about four a little girl in the park asked me about why Madi uses a wheelchair. I gave my usual response: "Some people are born and need to wear glasses to see. Madi was born and needs to use a wheelchair to get around." The girl said "like a fancy accessory." I just about fell over with laughter. To this little girl the chair was a fancy accessory. Love it! Disability in my stories is an "accessory."

I have sold my books in Canada, the U.S., England, Hong Kong, Australia, Argentina, Dubai, South Africa and New Zealand. I have the best job in the world. My next venture is to get into the school boards and be a guest author. Eventually, perhaps my daughter Madi would like to take this over. It would be amazing for her to go into a class and read to children.

Wednesday, October 26, 2011

Armadillo update

Thanks everyone for your wonderful ideas and links.

Alas, I was not able to come up with an armadillo costume. I did call some costume places and Ben and I went to one today in the hopes that they would help us piece something together that could pass as an armadillo.

No luck. We were told that that unusual-looking creature would be a "custom-build" and would require lots of advance preparation.

So, instead, Ben has decided to be a musketeer. He has one of those cool hats (see above) and a burgundy cape, some red gloves and a flintlock pistol replica (I think that's what it's called).

What are your kids wearing??

Monday, October 24, 2011

Armadillo anyone?

Ben has been 'thinking' on a Halloween costume. It had to be an animal, he said.

Today he decided. At first he told me it was an anteater -- he told me this by finding a Zoboomafu show about anteaters.

Then, just as I was putting out word that I needed help on an anteater costume, he brought me the voice software on his iPad to let me know that it wasn't an anteater after all -- it was an armadillo that he wanted to be.

Even though Halloween is Ben's favourite holiday, I always find myself about a week away from the event in the same situation: in search of an unusual costume. Where on earth do you find an authentic looking armadillo costume -- one with scales that look like armour?

Ideas? Anyone?

There is a Halloween dance at Ben's school this Friday and he wants to go.

No more accidents!

Many of you remember Tommy Glatzmayer (left) and the book he wrote with his mom Nathalie Wendling: Melanie and Tommy have two pet rats and one syndrome.

Nathalie just sent me this exciting update on her daughter Melanie (right), 11, who has Cornelia de Lange syndrome. For years, Nathalie has tried to toilet train Melanie. This summer it happened. Nathalie tells us how:

Over the summer, I desperately tried to toilet train Melanie -- as I do every summer.

She has not worn a pull-up since 2005, but we needed to bring her to the washroom every two hours. She would have a few void accidents weekly, but most of her bowel movements were accidents. In August, I decided to duct tape a night-time potty training buzzer mechanism to her underwear during the day. She would wear a normal pair of underwear and then the second pair would have the duct-taped mechanism, so it would not touch her skin.

At first, I was very depressed, as the device was ringing all day. I was convinced her brain was not capable of sending the signals. But I decided to leave the mechanism there anyway. It was relieving some stress from my life. I didn't have to force her to go to the washroom -- the buzzer was doing my work. After 15 days, Melanie was completely toilet-trained. Suddenly it was September and back to school.

I tried meeting with the teachers to explain about our success and the buzzer, but no one had time to listen. No one wanted to listen. I was made out to be some kind of crazy mom with a crazy agenda.

The staff continued to bring Melanie to the washroom every two hours and they wouldn't stop. It was confusing her brain and she was having many accidents.

We pulled her out of school at the end of September and set up a meeting. Our team consisted of a psychologist and a speech pathologist with some medical evidence written by a doctor that Melanie was physically capable of knowing when she needed to go to the washroom. Both professionals have known Melanie for over six years and believed she was capable of requesting to go to the washroom

What we discovered was that Melanie was terrified to let people at school know she had to use the bathroom. She didn't know how to interrupt the teacher or interrupt her friends. Melanie can barely communicate, never mind find the confidence to interrupt.

After a few meetings, some professionals from the school board got involved and the board said it would make a plan of action for all staff to follow by the end of October. 

We sent Melanie back to school last Monday on the condition that they follow our plan of action until their plan had been formulated. It was so difficult for Melanie. She was so stressed. We rehearsed and rehearsed and rehearsed every single scenario at home. I spoke about fear, friends, teachers. I spoke and spoke and spoke. I wondered if Melanie understood any of it.

I had not slept in two months. I knew this was my last chance of ever training her. The school board could decide that Melanie wasn't ready and order her back to the washroom every two hours. This was it. The time was now. I could smell, feel and taste Melanie's success. I knew she was ready, why would no one believe me?

This was a very important week in Melanie's life. Melanie had to find the courage: the courage she never had before, the courage she did not know she had.

October 17 - Melanie went to the washroom once.
October 18 - Melanie went to the washroom once.
October 19 - Melanie went to the washroom once.
October 20 - Melanie went to the washroom four times.
Ocotber 21 - Melanie went to washroom five times.

Melanie found the courage and she loved it. What a show off! She was so proud. We are so proud.

Is it finally my turn to walk out the front door with no diaper bag? Has that time finally arrived for me? Is it real? Is it really happening?

My advice to other parents? We have tried three different buzzers. The best one is available at Costco pharmacy. It has a rubber tip (this part is taped to underwear). You must order it at pharmacy counter and it is ready for pick-up next day. I would recommend doing this intervention during the summer as the students and staff at school found the buzzer to be very distracting and apparently even psychologically disturbing. 

Please learn from our mistakes and schedule a big meeting with all school staff before introducing the buzzer in the class environment. All staff and students need to be properly informed and prepared.

I am convinced we would not have had success without the buzzer. I desperately tried everything for so many years. The buzzer enabled Melanie to make the connection.

We took this picture this morning. The buzzer is kept in a little pouch (cell phone holder). The pouch is pinned to her pants with a large safety pin.

Melanie was very excited to take this picture today. She understands and is proud of her accomplishments.

Thursday, October 20, 2011

The Anti-Romantic Child

An excerpt from this book appeared in Newsweek a few months ago and was blogged about on the Chronicle of Higher Education. Here's what Publisher's Weekly had to say about Priscilla Gilman's new memoir. Have you read it? Louise 

The daughter of literary agent Lynn Nesbit and the late theater drama critic Richard Gilman crafts a beautifully sinuous and intensely literary celebration of the exceptional, unconventional child. Her son, Benjamin, was born when she and her academic husband, Richard, were in graduate school at Yale, where she was still working on her dissertation on the Romantic English poet William Wordsworth. As "Benj" grew older and failed to hit the usual milestones of children his age, exhibiting brilliant but "odd" behavior such as an obsession with numbers, aversion to physical affection, fastidiousness, inability to feed himself, and echolalia, Gilman realized these were "uncontrollable manifestations of a disorder," namely hyperlexia. Falsely reassured by their well-intentioned pediatrician, the couple finally sought professional therapists, and after they relocated to Poughkeepsie, N.Y., where both got teaching jobs at Vassar, Benj made marvelous progress in school. Throughout her narrative, Gilman extracts from many of Wordsworth's poems, which comment on innocence and loss and gave Gilman tremendous succor during Benjamin's early development, making for both charming and studious reading. Her thoughtful memoir involves the breakup of her marriage, rejection of an academic career, and move to New York City to work in her mother's literary agency as much as it delves lyrically into the rare, complex mind of the unusual child.

Wednesday, October 19, 2011

Goodbye mom, hello therapist

A Ryerson study of 20 mothers of children with autism looks at how mothers sacrifice their roles as parents, spouses, friends and professionals in order to become full-time 'therapists' to their children.

"Parents are talking about this, but it's still not highlighted in the literature," said Dr. Nancy Walton, an associate professor at Ryerson's School of Nursing and ethicist who was speaking at a Bloorview Research Institute presentation yesterday.

Through qualitative interviews with 20 women, most of whom identified themselves as their child's primary therapist, Walton uncovered the following themes:

While professionals tell parents early intervention is key, an autism diagnosis typically meant that publicly-funded therapies were cut off, and the child was wait-listed for services. One mother noted that in order to get her child help at the age of four, he would have had to be diagnosed in utero. Another said that her non-verbal child had been on a wait list for speech since 20 months. He remained high on the list and was about to turn five.

Mothers took on the role of active therapist because publicly-funded therapy was rationed in inconsistent blocks or non-existent and they felt time was running out; they saw their child as a unique individual that they knew best; and through networking they heard about positive results from other parents who delivered most of their child's therapy. A therapist who wasn't able to provide the amount of therapy the child needed would offer to 'train' the parent to do the therapy at home. In addition to therapists, mothers viewed themselves as case managers in co-ordinating their child's team of physicians, specialists and therapists. Fifteen respondents did not work outside the home and a number described therapy as their new 'career.'

In order to deliver a gruelling 48 hours of therapy a week, moms integrated therapy into their everyday life, often dedicating a room in the house to the task. Interaction with their child no longer involved any 'down-time.' Every activity became purposeful and therapeutic, "making it difficult to be a mom," Walton said.

Respondents described their therapy role as more than a full-time job. They felt guilty if they weren't teaching their child every waking hour. The moms reported exhaustion and an inability to fulfill their role as spouses and to provide any one-on-one time to their other children. The respondents had no social life outside the home and considered their child's therapy their work life.

On a positive note, doing therapy often gave the moms the first effective way to interact with their child and when their child made progress, they felt rewarded.

The respondents identified the lack of resources to help mothers address exhaustion and take care of themselves.

They felt decisions about services and cut-off dates were arbitrary and ad-hoc. Walton, after analyzing the data, expressed concern for vulnerable mothers of children with autism who were new Canadians, didn't speak the language, had low literacy, or were single parents or isolated.

Dr. Evdokia Anagnostou, a neurologist and clinician scientist who focuses on autism at Holland Bloorview, asked whose mandate it was to protect the mental health of parents given the high levels of stress.

Walton said that the mandate may fall within our commitment to delivering family-centred care.

Tuesday, October 18, 2011

Notes from a dragon mom

Don't miss this piece about parenting a child with a terminal illness in the New York Times:

Notes from a dragon mom

"No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t."

Listen to the children, ethicist says

We underestimate the ability of even young children to participate in health-care decisions and need to recognize them as part of the decision-making team with their own preferences, said Franco Carnevale, a Montreal nurse, psychologist and clinical ethicist speaking at the 2011 Canadian Association of Pediatric Health Centres Annual Conference yesterday in Ottawa.

“The child has not been on the radar as a recognized decision-making agent,” Carnevale said. “I’d like to see a paradigm shift from adults making decisions about children as moral objects to seeing children as moral subjects with their own insights and perspectives on what’s right and wrong, what’s just and unjust, and what’s good and bad.”

While he doesn’t view children as independent decision makers he says physicians and parents have an obligation to provide them with information adapted to their understanding in an attempt to solicit their “willfull cooperation” in a treatment plan.

“We have a tendency to underestimate children’s capacities to participate in decisions,” Carnevale said. “Those decision-making abilities can develop better in children if we engage them earlier on, and children appreciate having a say about their treatment plan.”

Carnevale said professionals tend to overestimate or underestimate the burden of a particular treatment for youth. For example, he spoke about a 4 1/2 year old girl on long-term ventilation who viewed her pap machine in the same way as an adult might view eyeglasses. “She called it ‘her pap’ and she likes it and is happy it made her feel better.”

On the other hand, he spoke of a 15-year-old teen who opposed having a defibrillation device implanted in his chest because the resulting bump would harm his body image.

By tailoring information to different levels of understanding and listening to the child’s wishes, we communicate an “underlying respect for the child’s dignity,” Carnevale said.

This is important whether or not the child has a developmental disability or can verbalize their wishes, he said.

Carnevale was speaking during a town hall that was moderated by Dr. Brian Goldman, host of the CBC show White Coat, Black Art.

Dr. Margaret Lawson, a pediatric endocrinologist at the Children’s Hospital of Eastern Ontario, echoed the importance of children and parents to healthcare decision-making and said “families are the most underutilized resource."

She spoke of a shared decision-making model in which two-way communication occurs between two experts: the doctor and the family. “You need expert knowledge about the condition... and you need to know how the family feels about risk and what their preferences and values are.

Lawson said a decision tool developed at CHEO “helps take families through the process of making an informed decision that is consistent with the family’s values.”

This includes identifying treatment options, benefits and harms, and the family’s values, including which benefits and harms matter the most to them.

Dr. Lawson emphasized that patient engagement is not just ‘parent’ engagement and the child’s voice is essential.

Friday, October 14, 2011

Explaining disability

I hope to include resources on explaining your child's disability in the January issue of BLOOM magazine.

I'm interested in any great articles you've read on this topic, or websites that can help parents come up with a simple, upbeat description tailored to different ages.

Please post any resources you recommend we share with readers.

Thanks! Louise

Thursday, October 13, 2011


Wednesday, October 12, 2011

This and that

Ben's voice has changed!

We had a friend over Sunday and she pointed out that it had dropped -- his high-pitched giggles are no longer high-pitched. I think we'd noticed this but not acknowledged it. When he came home from camp, he had a bad cold so his voice was husky. But then the cold went away and his voice continued to be deeper, lower.

Here are some interesting articles. Louise

Stutterer speaks up in class; His professor says keep quiet

Disabled men at higher risk of sexual abuse than non-disabled men

Has Down syndrome hurt us?

Monday, October 10, 2011

'Don't change'

I read this quote this morning and thought it fit well with some of the themes discussed in Under the hero's cape and Outcomes: How to let go.

"Don't change. Change is impossible, and even if it were possible, it is undesirable. Stay as you are. Love yourself as you are. And change, if it is at all possible, will take place by itself when and if it wants. Leave yourselves alone. The only growth-promoting change is that which comes from self-acceptance."  Anthony de Mello, Jesuit priest

Happy Canadian Thanksgiving and American Columbus Day! Louise

Saturday, October 8, 2011

When nothing can mean everything

Check out this great piece on Motherlode, which seems written in response to some of the discussion we had to the posts Under the hero's cape and Outcomes: How to let go.

Here's how it begins:

"I would do anything to help my child." Who hasn't said that and followed up their words with actions? But the parents of special needs children get to prove it on what seems to be a daily basis, since there is always a new therapy, medication, school or tutoring option being presented to us. And we often leap before we look. Even when a program doesn't sound quite right, hey, like the lottery, you never know. What if this one thing you choose not to try is "it?" Aside from fearing that, we get afraid of being branded as the mother who doesn't care enough to go through the wringer as well as her life savings.

Thursday, October 6, 2011

Meet Mitchell

Here is a second guest blog from Lori Beesley, who sits on Holland Bloorview’s family advisory committee. Every year Lori goes into her son Mitchell's school class to educate the students about Fragile X. She shares her speech below. I love the way she describes things about Fragile X and Mitchell (above) in a way that any child could relate to. The day she gives her talk, a note is sent home to parents, including Lori's speech and her phone number. "After the first year, I was asked to speak with all the students in the school, so I moved from class to class," Lori says. "As the kids got older, their questions went from things like 'Can I catch Fragile X?' to 'Where will Mitchell live when he's all grown up?' and 'Will he ever be able to get married?'"

Meet Mitchell

Hi there, my name is Lori Beesley. I came here today to talk to you about something called Fragile X syndrome. It is the most common cause of inherited mental impairment in the whole world. In fact, there are thousands of boys and girls everywhere in the world that have Fragile X. To tell you the truth, I had never even heard of Fragile X until many years ago. Then a doctor told us that our son Mitchell had Fragile X syndrome. I know that some of you already know who Mitchell is, because you have been in his class, or from daycare. I’m here to tell you a little about Mitchell, Fragile X, and how it affects our family.

When someone has Fragile X, it means that before they were born, a tiny part inside their brain didn’t grow the same way that most people’s do. Their brain is the same shape and size as everyone else’s, there is just a little, tiny part inside the brain that is different. That tiny part makes them act differently and  learn differently.

Have you ever been in class and the teacher is explaining something, it might be science or math or spelling, and you just don’t get it? You are trying to understand and you just can’t? Put up your hand if that’s ever happened to you. I know it used to happen to me too. You know what I would do? I would ask someone else to explain it to me, a friend or another teacher or my mom or dad. When that new person explained it to me, I would get it. I’ll bet that you know what I mean. The reason that you “get it” is because that other person explained it in a different way, and another part of your brain understood.

People with Fragile X can have a really hard time learning things in the classroom. Sometimes they have to learn the same thing over and over, explained to them in lots of different ways before they “get it." When we were teaching Mitchell what a dog was, we had a book with a picture of a dog and we’d point to it and say “dog." After a while, Mitchell knew that picture was a dog. Then, one day we were at the store and there was a dog tied up. I pointed to it and said “dog." Well, Mitchell looked at me like I was CRAZY.

I knew that he thought that “dog” meant the picture in the book. This dog in the store was brown. The one in the book was black and white. This dog said “woof” and the one in the book didn’t say anything. This dog moved and wagged his tail, and the one in the book always stayed in the same spot.

We decided that we had better try something else with the picture in the book. Next time, when we looked at the book, we said “woof.” Then Mitchell learned that dogs make a noise. Every time we saw a real dog, we said “woof” and one day Mitchell said “dog.” He finally got it. It took Mitchell a long time to learn about dogs, and we had to figure out a way to explain it to him so he could “get it.”.Now he knows and understands all about dogs, and lots of other animals. Sometimes he learns things faster, sometimes slower, just like all of you.

Fragile X makes people act differently too. Their brain lets in too much information all at the same time, which can make them upset. I’ll try to tell you what I mean. Put up your hand if you like to watch TV. Have you ever been watching TV all alone, when all of a sudden your brother or sister starts talking to you, then your mom tells you to do something, then your dad starts up the lawn mower outside, then the phone rings and ALL you want to do is just watch TV? How does that make you feel?

Pretty upset? Kind of mad? Does it make you want to yell at everything? You know what? People with Fragile X feel that way a LOT of the time.

Right now I know that you are all sitting here and listening to me. If you have Fragile X, your brain has trouble focusing on one thing. That means a student with Fragile X might be smelling the floor cleaner, watching someone fidget, feeling the tag in the back of their shirt and trying to pay attention to me all at the same time. And that makes them feel the way you do when you get upset, trying to watch TV. T

Someone with Fragile X can be trying so hard to figure out how to handle all that stuff that's happening to them at once, that they forget how to act appropriately, or the way that they should. They might flap their hands like this, stand up when they should be sitting, or yell out something when they should be quiet. It is their way of dealing with the way they are feeling. Sometimes it can make them feel better, and then sometimes it can make them more upset. Sometimes Mitchell even gets upset about something that happened to him a little while ago, but it’s just sinking in now. That is part of the mystery of living with Mitchell. We have to try to help him learn how to handle things that upset him, in a way that can help him feel better next time.

I know that some of you have asked me why Mitchell won’t say "Hi" to you if you see him outside of school, maybe in the park at the end of our street or up at the plaza. There is a very good explanation for that. I want everyone to think of someone famous right now ---your hero. Maybe a sports hero, a movie or TV star, a singer.

Now picture that tonight you are sitting having dinner with your family and the doorbell rings. You answer the door and there is a huge stretch limo parked outside and the person you were just thinking of is standing right in front of you, saying "Hello!" Chances are you would not say “Hi, come on in.”Your brain would be so busy thinking “Why are they here? How did they get here? OH MY GOODNESS!”

The person would still be standing in front of you and you are still not saying anything. Well, to Mitchell, all of you are HIS heroes. When he sees you outside of school, he’s not expecting it and so it throws him a curve. Kind of like seeing your teacher at the grocery store -- you might be feel weird and awkward. What you don’t know is that a minute after you say "Hi" to Mitchell, he usually says "Hi" back to you, but you miss it. That’s why his dad or I say "Hi" for him. We know he really wants to, he's just overwhelmed at that moment.

The last thing I want to talk to you about is YOU! Mitchell’s dad and I want to tell you that we feel really lucky that Mitchell goes to a school where so many of you know him and try to help him. You are all the best teachers that Mitchell has. He will watch you, and see how you do things, then he will know how to do those same things. If Mitchell is doing something that he shouldn’t be, or acting silly, you can all help him learn the right way to do it, or a better way to behave. He will listen to you.

Even though Mitchell’s brain may not work in the same way as yours, his HEART does. He likes having lots of friends, to play and to laugh with, just like all of you. He likes to ride his bike and scooter, watch videos, and go to the park, just like all of you. He has his good days and his bad days, just like all of you. It’s nice to know that he has people here that care about him and help him through the bad days and laugh with him on the good days. Mitchell and everyone else who has Fragile X have special needs, but we know that as long as Mitchell has people like you around him, he will have a good life! Thank you.

His hero

This just in from Ben's English teacher. He is in an English class with other kids who are deaf and hard of hearing:

"Ben is doing really well in English class. He's reading the same material as the rest of the students. I gave him a bit of homework which he rolled his eyes at!!! I asked him if he could name 3 people that are his heroes. He said right off the bat that his dad is his hero! He is to give 3 reasons why he thinks each person is a hero.

I love Ben!

Wednesday, October 5, 2011

'I don't remember when I realized I was different'

'I don't remember when I realized I was different'
By James Shea

I sat in the bleachers at the Dean Dome in Chapel Hill, N.C. last year. Erskine Bowles, the former president of the University of North Carolina and a presidential appointee to the National Commission on Fiscal Responsibility and Reform, gave the keynote address. I scanned the rafters and saw the multiple national championship banners.

“What a journey,” I thought to myself at age 40. “I have come so far.”

I was raised in a small farming community in Oregon and was born with one arm. I was in Chapel Hill for the annual North Carolina Press Association awards and surrounded by fellow newspaper professionals. I won first place in the “Best Breaking News” category and was at the event to receive the award. I had beat out dozens of other newspapers in the state and who knows how many reporters.

It was not my first. I have won a dozen writing awards. Some were as part of a team and others as an individual. I did this all as a disabled journalist, something that makes me proud.

The journey was not easy and required hard work and dedication. I had so many people along the way who doubted my abilities and even thought being disabled somehow made me stupid. Please! There is no relationship between my disability and my brain. I know that I am not the smartest person in the world, but I’m not dumb either. I have two bachelor’s degrees from the University of Oregon and survived 10 years in a dying profession – print journalism.

It didn’t start off so well. I barely graduated high school and have struggled with depression as an adult. I have screamed at the world, pissed at the cards I was dealt. But nothing will change my situation.

I am disabled, and I will be that way as long as God allows me to walk this earth.

I don’t remember when I realized that I was different. While I have one arm, the disability goes much deeper. My entire right shoulder never really formed in my mother’s womb. I have a small finger that protrudes from my partially formed shoulder. Anyone who looks at me sees my disability. It’s rather obvious. I see it in people’s eyes, especially young children. They stare at me in the grocery store or the park.

“Look mommy, that man has one arm,” the child often says.

It makes me feel uncomfortable even to this day, but I have come to terms with that. I will not hide from the world. I have a right to earn a living and find happiness just like anyone else. I just have to work a little harder.

I never really planned to be a journalist or a writer. It just happened. I did a few freelance articles after college and took a job at a small community newspaper in Colorado. I was not very good at first. I mostly covered city council and county commissioners. My editors were patient with me. They taught me better ways to tell a story and how to dig deeper into a subject. And through that process, I had to deal with the awkwardness of being a disabled journalist. But I adapted. I had to place my notepad on my knee, when others held it with their hand. I never let the odd looks and uncomfortable situations get in the way. I had a job to do.

When I was young, I told myself, “I’m normal.” This story worked until puberty. Then, my friends got girlfriends and kissed them for the first time. I know girls, especially teenage girls, had a problem with my disability. I understand. That didn’t make it easier. But my junior year in high school, I met a young woman who looked past my disability and dug herself deep into my heart. We dated throughout high school and are still friends today. As I got older, the dating became easier as women matured, and I became more confident in my own skin.

For my parents, it was hard. They saw my struggles and wanted to help.

As a reaction, they often sheltered me from the consequences of my actions. I did something dumb, and my parents, especially my mom, would make excuses. I went unpunished.

If I can give parents of a disabled child any advice, it’s this – don’t be over-protective. You need to be as hard on them as you are on any child. Yes, growing up with a disability is hard. I won't say it's not. But don’t make excuses. A child is a child. He or she makes bad choices, and they must understand those actions have consequences.

A couple of years ago, I wrote a memoir about my experiences as a disabled person and a dog who helped me through a tough period in my early 20s. I had several New York agents read the manuscript, but none chose to represent me. My friends who read the manuscript pressed me to find a home for the manuscript. I recently published the manuscript, Plucking Wolf Fur, as an ebook on Amazon. I want parents of disabled children to learn from my experiences. Life can be bad, you can make bad choices, but in the end you can find peace and your place in the world.

James Michael Shea is an award winning-journalist and is the author of Plucking Wolf Fur: A story of one arm, one dog, and an American family. He blogs about his book and media convergence at He can be reached at

Monday, October 3, 2011

Outcomes: How to let go?

An interesting dialogue follows Friday's post about Jennifer Johannesen's book: No Ordinary Boy.

Jennifer notes that her pursuit "of optimal ways of being in the world" for son Owen (that pursuit that I believe every parent undertakes to give their child the richest life possible) was worthwhile and she has few regrets because of it.

But she notes that she could have approached intervention in a healthier way, one that didn't consume and exhaust her and lead to burn out.

"I would have had a healthier/happier time of things if I wasn't attached to outcomes," she says. "And if I'd felt a welcome place to voice the futility I was feeling."

I've found it hard to come to terms with the fact that I can't control the outcome of my son's life; that I may invest innumerable resources in therapy, equipment, life opportunities and one-on-one time but "results," if any, may not be related to the efforts I put in.

I've been told that I need to measure myself on what I put in (e.g. did I make the best possible effort to promote Ben's speech?) -- not what comes out (he never acquired speech).

That's not a common way of thinking in our culture.

A popular platitude is that if you work hard, anything is possible, and that we get what we deserve.

Therapy is increasingly goal-oriented (with our commitment to evidence-based care). For parents whose children don't meet the hoped-for goals, it can seem like a set up for failure.

Do you believe that it's possible to live in our culture and rehab system and not be devastated when our children don't make the progress we hope for?

I wonder how we can change our definition and understanding of rehab -- and our common concept of success -- so that it isn't so black and white, so that there's more room for grey?

How could rehab professionals counsel parents so that they don't fall into the trap of 'more therapy is better' when their child isn't making any meaningful progress?

And finally, how could rehab professionals better 'hear' parents like Jennifer, who says in her book: "I want to cringe, cry, yell when I think of my 30-something self. I worked so hard, and yet underneath it all I felt the futility...I could pick just one thing of the 50 and do only that one thing for 10 years and it would still never be done. It's all too much, and it will never be enough."

How can we, as parents, better speak up?