Tuesday, May 24, 2011

A letter to myself

Recently it was brought to my attention that my anxiety was a manifestation of being overwhelmed by the deep set of emotions I have for my son Ben, 17. Whenever these hard emotions surfaced, I was told, I popped into obsessing about something ridiculous as a defence mechanism.

A therapist suggested that some of my underlying emotions about my son included deep disappointment, grief, guilt and anger.

When I first heard the word 'disappointment' I bristled at the thought. How could I be disappointed in my precious son?

But the more I thought about it, it came to me that my disappointment centred on feeling unsuccessful at promoting his development, despite 17 years of hopes and dreams and intensive intervention.

I have done everything in my power to support my son's progress, but he hasn't made the gains we would have hoped for. He can't speak or write and although he signs, it is not a fluid form of communication because of his fine-motor problems. His complex disabilities make it really hard for him to learn.

I still sit with him every night at the computer, sounding out and pointing at letters, while he painstakingly pecks out a short sentence or two in an e-mail. But other than the opening greeting and his closing "Bye, Ben" he can't initiate the structure of sentences on his own. I am working on things we've been working on for a dozen years. Some things we've given up on, for now, like math.

It's hard for me to reconcile the efforts I've put into my son with the outcome on his development (and no, I don't view my son as a 'product' but as a sacred human being). It puts the lie to all of those platitudes about 'anything is possible if you work hard' and 'people get what they deserve.' It's hard for me to acknowledge that much of people's success in life is simply the luck of the draw -- the gifts they are born with.

I wonder about whether I'll still be working on the same basic reading skills with Ben in 20 years. Maybe I will be, and maybe that will be okay.

It was suggested that I write a letter to myself to chronicle some of the efforts I've made on my son's behalf. I am sure all of you have similar letters within you that you could write yourself. Here's a start on mine:

Dear Louise: You have always done everything humanly possible to improve Ben's life, support his development and honour who he is as a person.

I can't think of one instance where your effort wasn't 150 per cent.

I remember when you got his medical records from SickKids a few years ago, and were astounded at the number of surgeries and therapies he had in his early years. He’s now had over 15 surgeries and last year spent 3.5 months in hospital doing rehab. How were you able to physically and emotionally keep that up?

You did so much research in the hopes of finding treatments that could better his life. You contacted experts all over the world and even started an international association for people affected by Langer Giedion Syndrome -- which included the two doctors who named the syndrome and other experts in LGS, growth disorders and bone problems.

You connected over 100 families after being told there were only 60 reported cases in the world.

You produced a newsletter that was filled with human stories about children and adults who have LGS, and their families. In addition to providing practical and emotional support for families, it was a place where people could celebrate their children and their accomplishments. You sent it out to hundreds of geneticists across North America with the goal of raising awareness.

In terms of promoting Ben's speech, you left no stone unturned. From researching different treatments for apraxia and oral-motor problems online, to getting him therapy -- at one point you were taking him 4 times a week at a cost of $700 a month -- speech was a constant focus from about the age of 1-2. You sought out experts in the U.S. -- Sara Johnson and Nancy Kaufman and a specialist who was an expert in kids with velopharyngeal flap and oral structural problems. You and D'Arcy drove the 10 hours to New York -- a number of times -- for a single appointment with a speech therapist, then turned around and came home.

You had Ben seen by a whole team of specialists at the New York University Medical Centre. You had him go for intensive, twice daily speech therapy for 2 weeks at a special clinic in Michigan -- paying for a worker to go with Ben and D'Arcy, and the two hotel bills.

You spent the second week there, and for you and D'Arcy you took your vacation, not to relax, but to try to improve Ben's life.

You spent thousands and thousands of dollars on these trips -- borrowing against your mortgage to do so.

You tried so hard to get Ben a good education that met his needs. You would print out all the curriculum requirements for each year and spend hours adapting them for inclusion in his individual education plan. But over the years it seemed that the IEPs weren’t followed and his progress wasn’t properly tracked. You spent hours on what, now, looking back, seem like "make work" projects -- like laminating picture word cards.

At one point you convinced the distributor of a voice technology manufacturer to loan you a Dynamite voice device because your rehab centre wouldn't approve such a sophisticated device. You were able to videotape him using the dynamite and that resulted in the rehab centre reversing its decision about approving him for funding.

You found exceptional people to work with Ben -- people who viewed it as a calling.

When he didn't get what he needed in his kindergarten class, you put him in an alternative school and paid a worker $500 a week to accompany him -- 3/4s of your salary at the time went to it.

When you were told by Dr. Rosenbaum that sign language was the way to go, you took the whole family -- and two workers -- up to an immersion sign language camp -- renting a cottage nearby to do so. You had to pay one worker to look after Ben and Lucy at the cottage while you and D'Arcy and the other worker attended the immersion course.

You paid a sign-language instructor to come to the house every week to teach sign language and you also sent her into the school to teach the kids there. You wrote a story about sign language for the school newspaper to try to gain the other parents' support.

You purchased all kinds of sign language books, educational workbooks and speech and OT tools. In addition to speech, OT and PT, Ben did ABA therapy, craniosacral therapy, osteopathy, naturopathy -- you name it, you tried it. I remember one of your workers even took a photo of him to a "healer."

For a couple of years he had g-tube feeds every night. For 6 months you gave him growth-hormone shots 6 nights a week at home (his little sister would scream “run Ben, run” whenever you got the needles and vial out). This followed a year of two of a high-fat diet and meticulous recording of every morsel that passed his mouth.

You were relentless in pursuing every opportunity and creating opportunities when they didn't exist.

You went from being a timid mother who respected authority to being a mom who would stand up for her son -- even if it meant refusing to leave the hospital until he had a surgery (after it was cancelled just as he was to go to the OR, because of a nursing shortage).

You were a bulldog with the education system -- learning about all of the legislation and advocating on his behalf. You even had a decision to lay off a special needs assistant reversed one summer -- pulling in the weight of a former deputy education minister.

You drew on the expertise of staff at Holland Bloorview. You talked with one of the best teachers in the school, to learn how to teach a child who was non-verbal to read. Then you got the Jolly Phonics books and you went through that whole program in a painstaking way with Ben. Any of his reading ability is probably due to that.

You sent him to typing class with a worker and you still sit with him sounding out the letters and giving him clues -- e.g. "tuh" for "toad" at the computer.

You filled out a Sunshine Foundation wish application that resulted in him being sent to overnight camp, all expenses paid, last year.

You have sat by his bed in the middle of the night holding his mouth open -- because he had trouble breathing through his narrow nasal passages and sleep apnea that woke him repeatedly. You walked him for hours at night during his early years when he had severe, recurrent ear infections.

You organized his first life plan day -- even though it was very emotionally difficult for you.

You have taken huge risks -- like signing him up at the Goodlife fitness club -- when it would have been easier to not confront what other people's reactions might be to his differences.

You are still a taskmaster to yourself on a daily basis -- writing lists of all the things you need to do with Ben: read Harry Potter, Dolch words, reading games online, have him send e-mails.

You have patience (not always) with his inappropriate behaviours -- picking compulsively at scabs and blowing his nose into his hands.

You are now paying for a reading tutor.

You have spent thousands of dollars buying computers and an iPad and software in the hope that it would be the key to unlocking Ben's communication.

You have spent hours and hours and hours programming voice devices.

You seriously considered moving to the US to get a better education for Ben -- and flew the family out to two schools that offered speech and sign. You talked to immigration lawyers about getting green cards, real-estate agents.

Anytime you heard of something innovative -- you would drive him wherever it was being offered.

You called every local private school that worked with kids with special needs. One principal, after explaining his disabilities and tiny stature said: "Eww."

You found a mainstream camp that might be willing to take Ben with a worker and took the family and a worker up to look at it. The worker wasn't interested in sleeping in tents, so you looked into nearby bed and breakfasts where they could stay. Can you imagine? You were going to pay for your son and worker to stay in a bed and breakfast so he could attend an expensive, mainstream camp? There were no limits on what you would try.

You organized parties to try to get kids over here. Ben would have an annual halloween party as it was his favourite holiday.

You had crazy dreams that perhaps he could be a bull dog breeder as an adult -- so you bought him a bulldog -- even though it was unlikely he could physically control a dog.

You appealed a decision (not successfully) when the provincial schools of the deaf said they couldn’t meet his needs.

In summary, there isn't a time during the last 17 years when you haven't had Ben's best interests top of mind and guiding you around the clock.

There isn't any valid reason to feel guilty that you haven't done enough.

Sincerely, Me xo

Louise Kinross works at Holland Bloorview Kids Rehabilitation Hospital in Toronto, where she produces BLOOM, a magazine and blog on parenting kids with disabilities.


  1. Wow. My eyes have teared up at this -- for you, for me, for all of us. Thank you.

  2. I don't have the words to reply to this but I had to try. Anyone who put as much energy as you have into making a situation better and then have it not be so would feel grief, disappointment and anger. The 1 thing you should really not feel is guilt. I wish there was something my words could do to make this easier for you but I hope you feel some comfort knowing there are people out here who support you and weep for you and your son and still hope that someday he will learn some of the things you have spent so many years teaching him. You are an amazing Mom.

  3. Thank you so much Elizabeth and 'The Jay Train!'
    I peeked at your blog The Jay Train and you have two adorable boys!
    When I write down what I've done, I know I did everything I could. It's just hard to reconcile it with the efforts not having the desired effect. But I also love my son deeply and am very grateful for him and what he teaches me.

  4. You sound like an amazing mother, an amazing person. I understand the guilt that you cannot seem to get away from - especially when hopes are dashed with little progress. That same feeling comes and goes in my own life. I often wonder why one child will progress more than another and hate when parents are congratulated on their child's progress as if they alone are the reason for it. I question my faith, I question humanity, I question my own abilities. But we can't! Please do not give up hope - you never know what the future may hold - in the progress of science or your son's own change mechanisms or that the fates might allow just one more miracle one day.

  5. You are an amazing woman, an amazing mother. I too teared up reading about your exhaustive efforts to provide everything you knew Ben needed. Keep this letter where you can read it often!

  6. Thank you Leanne! I really appreciate your message. I would love to hear about your child! Do you have a blog?
    Thank you Mary! Yes, I've printed the letter out. xo

  7. I do have a blog although I don't keep up with it as I should. http://morphetmania.blogspot.com/
    You are quite ahead of us in your journey. My little guy is 4.5 and I have a daughter who is 6. I like to read others journeys from time to time and do some advocacy work in our area, so I appreciate hearing stories of others, especially those farther down the path than us. It's so all consuming at times!