Wednesday, April 27, 2011

'In each other's eyes, we are enough'

'In each other's eyes, we are enough'
By Louise Kinross

“Monkey man. Monkey man.”

A two-year-old stood over my son in the sandbox, pointed at his face, and chanted the words like a mantra. It took me a second to make the connection. Then blood rushed to my head, it hurt to breathe and my eyes stung with rage and shame. My son’s ears did stick out like a monkey’s. But I wasn’t in the mood for educating.

“Time to go home Ben,” I said, scooping him up in my arms. I limped back to the safety of our house, where I didn't have to fear the judgment of others.

It was a few months later that I got out the baby album. I wanted to send photos to a family in San Diego whose child had the same rare genetic syndrome as my son. When Ben was diagnosed, there were only 60 reported cases of Langer Giedion Syndrome in the world. Children with the syndrome are born missing two genes on the long arm of chromosome eight, resulting in unusual craniofacial features and a host of bone, growth and learning problems.

I hadn't looked at these photos in two years. And I was in for a surprise. At first, I couldn't believe my eyes. The pictures were not the way I remembered them. How could that be? This was my son Ben’s album, but the baby in the photos didn't look like my flesh and blood son.

Now a toddler, my son had big, bright, piercing eyes that could drill a hole of tenderness in your heart. My son had a dimpled, ear-to-ear grin, pudgy cheeks and an adorably large head that made him look like a little Buddha. My son had fair skin and extravagantly long eyelashes.

The baby in the photos looked odd: ears that stood out and didn't line up, an unusually broad forehead and wide nasal bridge, and thin lips that gave a blank look to his face. His eyes slanted down a smidgen, the tip of his nose was flat and there was a smooth faint line where there should have been a vertical groove above his upper lip. His head was too big and his features seemed out of proportion.

My gut turned.

It was like looking at one of those trick pictures. The first time you see a profile of an elegant young woman looking off in the distance, and that's all you see. But then someone explains how to look differently at the picture: what if the young woman's ear is really an eye? Suddenly, the face of an old woman with a large beak of a nose and a pointy chin pops out. Where did she come from? And then your eyes will not allow you to see the young woman again.

A switch had flipped in my brain, and no matter how many times I squinted or closed and opened my eyes, I could only see the odd features and asymmetry of my boy's face. I couldn't see the baby that I held in my mind's eye. I couldn't see my flesh and blood Ben.

Three years before, I was pregnant with my first child. Like most parents, I could only envision our creation as perfect: conceived of our love and possessing an original mix of our DNA, this child was new, untouched, more part of the unknown, spirit world he came from than ours. Knowing he was a boy, we had already named him Ben Keegan – Keegan meaning 'little fiery one.' Fittingly, he woke me with kicks at about 4 a.m. each morning. I would walk to the window, look up at the blinking stars and wonder who he was and where he came from. The stars represented the mystery and majesty of my son and my longing for him.

"Ben is here," my husband D'Arcy exclaimed the night he arrived. I tried to focus on the little body with a tuft of dark hair at my feet, but he was quickly whooshed away. I lay back, wet with sweat, spent and spilling over with joy. D'Arcy kissed me. "Is he all right?" I called out. "D'Arcy, go see Ben!"

The midwife returned and put her hand on my arm: "He has some unusual features," she said. The words floated by me like distant clouds. My euphoria was complete.

When he was finally passed to me, wrapped up in a blanket with a little white stocking on his head, he did look different. I was concerned, but I wasn't panicked. I didn't know how to interpret his appearance. "Isn't that the way all newborns look?" D'Arcy asked.

The pediatrician arrived, unswaddled Ben, and looked at him disapprovingly. "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," he said. I hadn't noticed anything unusual about Ben's eyes. I had always loved the metaphor of the eyes being windows to the soul. I knew that mongoloid was an archaic term for Down syndrome. What on earth did 'anti-mongoloid eyes’ mean?

"In Down syndrome, the eyes slant up," he said. "Your son's eyes slant down."

Ben – the sacred being that had grown in my body like a new limb – lay naked under the stark, fluorescent light. The doctor inspected him, piece by piece. "The timing wasn't right," he muttered, shaking his head. My jubilation, a brilliant, burning fire, was now flickering in the wind of a competing grief. How could my son's birth be wrong?

The doctor said Ben's symptoms looked like a chromosome problem.

We took him home in a haze of shock. "Couldn't we still be a happy family?" I asked my husband on day three. On day four we saw a geneticist. Based on his 'abnormal' features, she suspected Ben had Langer Giedion Syndrome.

But outside the clinical setting, a different picture was taking shape: my boy was growing beautiful before my very eyes. I wrote in my diary:

2 weeks and a day

You have very delicate features – beautiful blue eyes, well-defined and delicate eyebrows, a round face with plump cheeks and tiny little lips.

3 months

You are becoming more beautiful every day. Your eyes are drop-dead gorgeous – big, blue, long, long lashes. You have an all-out, ear-to-ear grin with dimples.

6 months

It seems like a miracle that you are here. I like to sit and wonder at you – where you came from, how you came to us, how you are so perfectly formed.

How was it possible that I could view Ben as "perfectly formed" when medical experts described his face as "a complex picture with multiple congenital anomalies?"

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

In my eyes, he was physically beautiful. And it wasn't just a spiritual thing. Perhaps my eyes balanced out what was odd. Perhaps it was a matter of emphasis: in the same way that our brains can organize that trick picture to reveal an old woman or a young woman, I organized Ben's face in a way that made his features beautiful to me. Or perhaps it was simply a choice. I chose to see beauty.

I expected others to delight in my boy like I did. When they didn't, a black hole of grief opened up inside me.

A friend responded to Ben's photo by describing him as impaired. “I don’t think people are repulsed by Ben,” she added. Repulsed? I looked at the photo I had sent. To me he was irresistible.

Specialists who were consulted on other parts of Ben’s body couldn't resist documenting that he had "dysmorphic” facial features. I remember the first time I raced to the dictionary to look the word up, heart thumping at this new and horrible name that had been ascribed to my son. Dysmorphic: adj. "Malformed, misshapen or underdeveloped." One surgeon entered a clinic room and, without introduction, demanded angrily: “What is WRONG with his head?”

In my eyes his differences dissolved because I saw his face and being as a whole. But to other people, the features superseded the boy. In their eyes he was – at the core – different, an oddity, something less than human.

As I paged through Ben's baby pictures that night, I saw him through their eyes. For the first time, I saw the boy with the syndrome, the boy whose every feature had been scrutinized and found lacking. My eyes couldn’t correct the face in the photos – creating symmetry and proportion where it was lacking – like they did in real life.

It's been many years since then. Now, as a teenager, Ben has more disabilities than we ever imagined he would, and the one plastic surgery we chose to put him through, to try to reconstruct his ears, didn't work. Whenever I find myself weighed down by his medical picture – which is just one view and which inevitably focuses on what he isn’t – I know how to find my way back to a more true assessment.

I look into his large, deep-set eyes, which have, since babyhood, turned hazel. I can see my face reflected in the star-like light at the centre: he is part of me, and I am part of him. He has eyes you can fall into, and which are capable of communicating anything. In his eyes, I don't see the things that are wrong. I see Ben – which in its Hebrew form means ‘son.’ Is it possible that his wholeness derives from the simple fact that he is my son? He is mine. When I look into his eyes, I see a beauty and goodness that transcend appearance. His eyes mirror back my joy and acceptance. In each other’s eyes, we are complete. In each other’s eyes, we are enough.

Monday, April 25, 2011

Checking off the 'to do' list

My husband always tells me to focus on one thing at a time.

But sometimes the list of things 'to do' for your child can seem alarmingly long. Your mind is in a state of constant vigilance, trying to keep all of the various balls you juggle in the air.

Sometimes we forget to acknowledge that in fact we have made some progress. So I thought I'd do that today.

Here are some things to be grateful for at our house:

The IPRC went better than expected. Ben was given the designation mild intellectual disability and everyone at the table agreed he should be doing more academic work at his level. I have an appointment to discuss his IEP at the school this Thursday.

I found a reading tutor for Ben, and she came for her first visit last week. Check out this site she showed us:

We held Ben's first life plan meeting and were encouraged by the support of those who attended.

As a result of the life plan meeting, Ben is going to his Uncle Ian's house for dinner this Friday with Sallyanne.

Another friend offered to take Ben to the movies with her son. Ben got invited to a sleepover.

I followed up on the suggestion of some respite funding (which I was sure we wouldn't be able to access). It sounds like we might be able to receive a small amount towards our workers when Ben goes to overnight camp this summer.

As we've now clearly stated that Ben is interested in being a zookeeper, a BLOOM reader suggested she may have a strong connection we could work at the zoo for the opportunity of volunteer work. In addition, Ben received a computer game where the object is to create zoo exhibits and care for animals.

Matt came for a visit on the weekend, bringing Ben two Transformer movies. Matt, as you know, is a frequent commenter on the BLOOM blog and is also a friend of Ben's. Matt, coincidentally, happens to live right by the zoo!

I've played telephone tag with a contact at the Catholic School Board to find out about possible schools there, but haven't had time to follow through.

Ben is still going to the club with D'Arcy.

I have to follow up with the Toronto board about going out to see some potential schools. As you know, it is hard to fit all of these things in!

Next week I am joining a team from Holland Bloorview for intensive training in patient- and family-centred care in St. Louis. Family-centred care is about recognizing families as equal partners with professionals. Almost 450 participants are attending from across North America and further afield.

It's easy to get focused on obstacles and areas where progress hasn't been made. What items have you checked off the 'to-do' list related to your child. Tell us!

Thursday, April 21, 2011

Book review: Out of My Mind

Heather Morgan wrote to me about her daughter Kaitlyn (above) who wears leg braces for problems with bones in her feet. Kaitlyn, 10, had read Out of My Mind, a book about a girl with cerebral palsy, and could relate to many of its themes. I interviewed Kaitlyn to find out more about this book.

BLOOM: Describe the book Out of My Mind.

Kaitlyn Morgan: Out of My Mind is about an 11-year-old girl named Melody who has cerebral palsy and can't talk or control her body. She goes to a special class for disabled kids in her school, but the lessons are really boring for her, because she is really, really smart and has a photographic memory. In Grade 5, she starts inclusion classes with the regular kids in her school, which she really enjoys. When one of the kids in her inclusion class gets a new computer, Melody has the idea to get herself a 'talking' computer, so she can communicate better than with her Bliss symbol board. With her new computer, she joins the quiz team, and is chosen as one of six kids to represent her school in the city competition. She and her school win the tournament, and will move on to the country competition. But when it's the day to leave, her team goes on without her.

BLOOM: What is the character Melody like as a person?

Kaitlyn Morgan: Melody is a really kind person. She would be my friend if I met her.

BLOOM: How did you relate to Melody? In what ways are you similar?

Kaitlyn Morgan: I relate to Melody in many ways. We both are different than regular kids. We would rather be normal. We're both smart and enjoy similar things. We've been teased for our differences. It's hard to be the only kid in my school with braces and reading a book like this was almost like I had a friend like me.

BLOOM: What have you been teased about?

Kaitlyn Morgan: I have been teased before about my braces and that I talk funny.

BLOOM: How do things change for Melody when she gets voice technology?

Kaitlyn Morgan: When Melody gets her talker, she can stand up for herself better. She can show how smart she is and prove she's not stupid. She can tell her parents she loves them.

BLOOM: In the book Melody is initially in separate classes for kids with disabilities. What do you think about that?

Kaitlyn Morgan: I think some of the time, you want to be with people like yourself. But you also need to be with other people. Regular kids need to learn how to cope with people who are different. You can't blame them for not being like you.

BLOOM: In this book Melody primarily has physical disabilities. What if she had also had intellectual disabilities, and it was more challenging for her to learn?

Kaitlyn Morgan: If Melody had intellectual differences, the book would be very different! It's sort of based on the fact that she's so smart and can't share any of it. But, if she couldn't learn the same, I think that she would still be smarter than people expected her to be. She's just a clever person!

For children who do have intellectual disabilities, I think you need to work a little harder to be with them. I think that if you set your expectations to a lower level though, you might be surprised. The kids might be really smart.

You just have to set the right expectations. Not too high, not too low.

BLOOM: Who do you think would enjoy this book?

Kaitlyn Morgan: I think anyone from age 9 to 13 would enjoy the book. I love reading, and I find that the closer your age is to the main character, the more you enjoy the book. I also have leg braces and this book is one of my favourites because Melody is different, sort of like me.

Tuesday, April 19, 2011

Be still

Last night I sat for an hour in silence on a little red cushion, with my legs crossed in front of me, my hands on my legs, palms facing up.

There were candles lit and the scent of incense burning and the silence began with the gonging of a bell. I sat among 15 or so others, trying to follow my breath as my abdomen filled and emptied. Whenever a thought entered my head I said 'thinking' to myself, then focused again on my stomach and the incoming breath.

I was at a Shambhala meditation centre participating in a free 'sitting' practice.

I was inspired to attend this session after a fascinating interview with Tim and Gina Gort last week. Tim and Gina live in Grand Rapids, Mich. with their three daughters: Gwendolyn, 8, Violet, 2 and Eliza, 1. Gwen and Eliza have cerebral palsy. The girls use g-tubes and Gwen has a tracheotomy for breathing problems. Both children require round-the-clock care. The Gorts are the focus of an interview about respite care in our June print issue.

If you've been following them on their blog, you know that each parent has taken at least a week or more of respite, on their own. Gina went to a convent for 10 days. There she met with a spiritual guide and did meditation, yoga, reading, writing and reflection. Tim spent a week climbing the Smoky Mountains. While one parent is on retreat, the Gorts have nursing help during the day, but at night time the remaining parent supports the children alone.

"As Gwen got older, and then Eliza came along, I realized respite needed to be more than a break -- it needed to be a way of life," Gina says. In addition to annual individual retreats, the Gorts have weekly date nights -- when a nurse and a babysitter watch their children -- and Gina works meditation and writing into her days.

"This is new for us and it's taken us a long time to get to this point," she says. "I have to go away to not only get a break and get rejuvenated, but to come back with tools and ways to be in my situation and be okay with it."

The Gorts have me thinking about 'time away' in a new way -- as a way to sustain yourself over the long-term. But they emphasize that we should start small. So I'm starting with my red cushion. What about you?

Monday, April 18, 2011

Disability 'is a part of me, but it's not all of me'

I had the privilege of speaking at an education day for Toronto hospital communicators on Friday.

I was asked to speak about writing about people with disabilities.

I spoke about how too often we fall into using value-laden language that either portrays children with disabilities as victims or as heroes -- as somehow 'below' or 'above' the rest of the population, but not as a regular part of 'us.'

Lucy Nyman is a woman with a disability who spoke eloquently about what is was like to grow up with cerebral palsy. She talked about living in two worlds: the world of her family, where she felt respected and whole, and the world of rehab and her segregated school, where the message was: "You're not good enough. You need to be fixed."

She recounted being forced to walk in her underwear back and forth in front of doctors and "being talked about like I wasn't there. You felt like an object being observed." At age 10, Lucy stopped walking, and doctors insisted it was because she didn't want to go to school. "I remember not being believed or accepted. They thought I was making things up."

Lucy talked about how rehab has to be done in a framework of empowerment -- where children are given privacy and choices and feel validated. "It has to be about empowering the individual," she said. "My disability is a part of me, but it's not all of me."

Lucy now works as a peer support coordinator at the Anne Johnston Health Station, a community health centre in Toronto that serves people with disabilities and seniors. I wanted to share her wise words with you.

Thank you Lucy! Louise

Saturday, April 16, 2011

Dinner is served!

Friday nights Sallyanne comes and Ben cooks for all of us!

Thursday, April 14, 2011

Of interest

Jennifer Johannesen has a lovely post about sons Angus and Owen (above), siblings and 'equipment' called Brothers, vacations and wheelchairs.

"I am reminded of something in these photos – Owen’s wheelchair was an integral part of him and his identity," Jennifer writes. "Angus used to hang off of it, sit in it, decorate it, push it around… If we were walking down the street together Angus would always seek to maintain contact with it somehow."

Check it out.

What do you think of this? Woman who withheld cancer drugs from son with autism found guilty. I tried to imagine what it would be like to be a single mom supporting a child with autism through gruelling chemotherapy.

Also of interest:

Disabled man sues Wal-Mart over firing

Deaf world: The rise of a new American culture

Right planet, right child

Wednesday, April 13, 2011

Globe of dreams

My dear friend Anne-Marie wrote about participating in Ben's life plan day on her blog Circle of Friends.

The photo to the right is a globe of dreams Ben and the group came up with. It includes having his own house, working as a zookeeper and travelling.

Anne-Marie was able to participate in the brainstorming from her home in Dartmouth, Nova Scotia, through skype.

You'll want to take a close look at Anne-Marie's blog, where she writes about parenting her son with Asperger's.

Saturday, April 9, 2011

Life plan day

Friday, April 8, 2011

Happy weekend

Ben (right) has attended a sailing program run by Holland Bloorview for the last couple of years.

I'm including this photo in a slide show we'll use tomorrow at his first life-plan session.

To me his expression says "happiness."

When is a house a home?

Last night I attended a workshop by PLAN Toronto on how to plan for a home for your adult son or daughter with developmental disability when you can no longer care for them.

We were encouraged to think outside the box: If all things are possible, what would our son or daughter like in terms of a home? What are their underlying values in terms of living?

A home needs to reflect the person's personality and choices.

The general consensus was that we can't rely on dwindling government funding or group homes, which don't have spaces, but need to think more creatively.

People talked about shared-housing options, where parents might renovate a house so that the son or daughter has a private apartment, but the whole family comes together in communal areas. We were asked to think about how we might generate money to pay for support services for our children by renting space or bartering for space (e.g. providing room and board to a university student in exchange for that student providing some type of support to our son or daughter).

We heard about arrangements where a support worker lived in a basement apartment, the person with a disability lived on the first floor, the parents lived on the second floor, and the third floor was rented to generate income. The house would then be left in trust to the person with a disability.

Developing a personal support network of friends, family and acquaintances who will continue to support your son or daughter after you die is critical.

Two families at the event had sons in a supportive home-share program. They live in a basement apartment in a host home from Monday to Friday, where they pay rent and have overnight supervision by the host. This is part of a Community Living program that, unfortunately, is not being expanded. The parents said living on their own had had huge benefits for their sons. The downside of the home-share was that there was always the uncertainty of whether the host person decided to continue in the program. This didn't provide the long-term stability we associate with home.

Parents talked about the great gains in independence their sons and daughters made when living away from the family home.

But they also spoke about how demanding it was to organize and manage meaningful activities for their adult children during the day. They said their lives often revolved around chauffeuring their children to volunteer and other activities.

The consensus of the participants was that group homes aren't an option because of wait lists and because they lack the qualities of home most parents want for their children.

We heard about a group of parents that meets monthly in Scarborough to investigate how families can work together to create housing options for their children.

Safe and Secure is a book produced by PLAN that outlines six steps to creating a good life for people with disabilities, including creating a home. It has useful worksheets you can fill out with your son or daughter. It can be found on the PLAN website or you can receive a complimentary copy at PLAN workshops.

I'm looking forward to one called Nurturing Friendship on May 18.

Thursday, April 7, 2011

'We are still you and me'

We are graced today with an exquisite essay from Susan Senator (second left), author of Making Peace with Autism and The Autism Mom's Survival Guide. From left are sons Nat, Max and Ben and husband Ned.

Here are a few of my favourite posts on Susan's blog: Autism helps me get over myself, Look behind the lack of language and Group home proposal, in brief. Thanks Susan! Louise

'We are still you and me'
By Susan Senator

On a recent weekend, I watched the 1980s sci-fi thriller War Games with my family. This was a movie I'd never seen, but one that we five could all agree on. My family of software engineer husband Ned and three sons has so many variables it's a strange common denominator indeed that links us together: geeky, high-tech action movies with a hint of relationships to satisfy the mom.

Our weekends go something like this: My severely autistic son Nat comes home from his residential school, and I, of course, am happy to see him. I kiss his rough oily face and marvel at his size and presence. He stomps and stomps around – one of his autism-related calming behaviors – and it's all very endearing, even to the point of calling it "Joyful House Stompies."

On this particular weekend, like most, I noticed a day later that the House Stompies were not so Joyful. They were just loud. (Nat is 21 and though developmentally delayed, physically he is right on time.) Nat was everywhere: running up the back stairs, to the third floor, down, then down the front staircase and into the kitchen (we live in a quirky, creaky Victorian that matches our family’s personality). In the kitchen, Nat took a look at what I was doing – or not doing, as the case may be, because I'm always disorganized in Nat's eyes, when it comes to making meals. He then made a quick sojourn into the livingroom, to see what the rest were doing. As Nat thrives on routines which give organization to his otherwise chaotic inner world, I knew that I’d better come up with some structured activities immediately, or Nat would escalate.

But, on the weekends, we have our own inner lives, our own desires – Nat included – and orderly plans don't always pan out. Ned decided to take Nat on a walk to the coffee shop to pick up a pound of our favorite beans. Problem was, Ned was suddenly called to help a friend out with something. But he had already told Nat to get ready. I had gotten all psyched to have a quiet house for an hour but now suddenly we were already on Defcon 3 – a term I had learned about from having just watched War Games. Defcon 3 is the level at which Nat already has on his shoes. 'Shoes on' is the final part of the routine before going outside. If we are not ready when he is, Defcon 3 can blow up: 'Houston, we have a problem.'

I could see Nat was escalating. I heard, "Take walk, take walk," increasingly higher in pitch, the stomping even harder (loose old house ceiling fixtures clinking). Think think think Susan. Scared, scared, panic setting in...

But no. I didn’t give in to it. You see, I have learned, in all these tiring years of being Nat’s mom, that our neurons can be retrained. And so I thought to myself: You know what to do.

"Come on Nat," I said. He followed me upstairs. “Come sit with me," I said, sitting on my bed. He sat.

Not a time-out. Just the two of us sitting in a peaceful place. The sun through the lace curtain was soft, etching filigreed gray shadows on the white bedspread. Quiet air lay heavily, reassuringly on our shoulders and against our ears. Nat began sucking his thumb, a good sign. The loud chirps rocketed me back in time, to 1990, to another room, the same bed, my beautiful golden baby next to me, refusing to nap. Oh Nat, I thought. We are still the same. We are still you and me.

"Let's just wait a little bit,” I said softly. “Daddy is almost done talking on the phone. He will come. You will go on your walk. I promise."

Nat exhaled deeply. He had heard me. Not Defcon 3 at all. He’s just my son, after all. My peace was his peace. And so we just sat together.

Wednesday, April 6, 2011

This and that

Sholom Glouberman is a philosopher in residence at Toronto's Baycrest Centre for Geriatric Care, author of the new book: My Operation: An Insider Becomes a Patient, and founder of the Patients' Association of Canada.

This health-policy professor who spent years working in health care felt he 'knew the ropes' before undergoing his first major surgery. He was wrong, and writes about how the acute-care system doesn't respond to the needs of people with chronic conditions and renders them passive.

I found this Maclean's Magazine interview with Glouberman fascinating: On the shock of his hospital experience, patients' rights, and what needs to change.

I enjoyed this Toronto Star interview with Montreal author Joel Yanofsky who's written a memoir about his son Jonah, who has autism: Bad Animals (A father's accidental education in autism).

While all young children have tantrums, Jonah’s were frequent and out-of-the-blue. His wife, an art therapist, coped better with Jonah. “He’d cry and rage and I’d explode,” writes Yanofsky. “I can’t count the number of times I was exiled to the basement...”

Life with Jonah felt like being on a balance beam, says Yanofsky. If he made one misstep, such as slightly raising his voice, the boy might plummet into an afternoon of sadness, anxiety and obsessive talk.

“What was being asked of me simply felt like too much to ask,” Yanofsky writes. “I was afraid that whatever progress Jonah made was not going to be enough. By which I mean – and was as deeply ashamed to admit this seven years ago as I am now – enough for me.”

I never saw this when it ran in the Globe last November:  My son bullies his autistic brother.

And this is an interesting study at Arizona State University looking at deaf kindergartens in France, Japan and the U.S., and how they assimilate students into the deaf culture: Scissors, paste, sign language.

Tuesday, April 5, 2011

'Have friends'

Last night we looked at the 'Globe' section of Ben's passport planning. This includes dreams for the future -- about where to live and work, about people in your life, and leisure activities.

I wrote a list of physical activities like "ride horses," "go kayaking," "swim" and other interests he's been able to nurture at overnight camp. At the bottom I threw in "have friends."

He went down the list and immediately pointed to "have friends."

Can you tell this is going to be an emotional experience?

When Ben was three days old we sat with a clinical geneticist who told us he had a greater than 50 per cent chance of having a syndrome. And D'Arcy asked: "Will he still be able to run and jump and play with his friends?"

The only one that really mattered was the friends part, and that is something we have to work on. He does have one friend -- Matt, who is a reader of this blog.

He doesn't have reciprocal friendships, though I know he's very fond of the students in his class. And he certainly thinks of his fellow campers at Camp Kennebec (above) as friends.

Also of note, when asked where he wants to live, Ben wants a house and he wants to live by himself. The latter really surprised me. I was sure he would choose "with other people."

He's interested in being a zookeeper, a computer gamer or working in a book store.

Tomorrow is his IPRC. I have his psychologist and an advocate coming. I hope it will enable us to look at  other programs. But I was reminded that the most important thing to focus on now is his IEP. I hope I can work with the psychologist and advocate to come up with something that we're happy with -- that is realistic and can serve as a benchmark to measure progress.

On the subject of friends, I have a dear friend, Anne-Marie, who has written a moving post about her son Ryan, who has Asperger syndrome. Ryan has a beautiful imagination that shines through the world of his Meems -- creatures with a happy face but no nose. "I find it fascinating that a boy who is not supposed to ‘get’ faces recognizes and celebrates them in all their various forms," Anne-Marie writes. "Yet another reminder that a diagnosis is just a collection of symptoms – not a definition of who a person is."


And this is an illuminating story from The Independent about a language teacher who lost her speech to a stroke but composes music with a brain-computer interface: Locked in woman makes medical history.

Saturday, April 2, 2011

8 a.m. workout

Friday, April 1, 2011

'I'm a good person'

Last night Ben and I added three qualities to the 'Backpack' section of his iPad, which he'll use at his upcoming passport session (to plan his life).

Proloquo doesn't have an image of a suitcase, which is what this section is actually called, so we improvised with a backpack.

This section focuses on strengths and positive qualities the person brings with them. I wrote out a number of descriptors and asked him to pick which ones he thought captured his strengths (e.g. kind, Star Wars collector, loves reading, computer whiz).

This is what he picked, in this order.

"Funny." "Smart." "Gentle." (He made it clear that he was only going to choose three qualities because of his limited interest in programming them into the device).

D'Arcy and I felt these described Ben to a 'T' and were so touched.

"Ben is smart," D'Arcy said. "But it's an unconventional smart. I wish more people could see that."

The day before we looked at the 'My story' section and in response to: "What would it be important for people to know about you?" Ben signed "I'm a good person."