A candle was lit for Owen and was allowed to burn throughout the day.

Later that week, anticipating Angus’ return to class, Ms. M gathered the children again.  She knew that his return might be overwhelming for him, and perhaps for his classmates, so she offered a suggestion:  upon Angus’ return, they would offer their condolences all at once.  Expressed in unison.  So that Angus could receive the support and love of his friends and together they could simply move on with their day.

Ms. M also knew this was an unusually experienced class; two of the children had lost their mothers in the past year.  She invited them to speak about what was helpful and what was not.  Surely a deeply supportive experience for those children as well as for Angus.

They then worked diligently on cards for Angus, each child offering words of sympathy and beautiful drawings directly from themselves.

Angus returned to class to a chorus of well-wishes, a group hug and a stack of cards, bound in twine.   A candle was lit for Owen, and the class moved on to Main Lesson.

At the funeral, I left out a blank artbook and some coloured pencils on a low table.

Sometimes I cheer people up.   Not because I try to, but because sometimes people will compare their own stresses to what they assume are mine and will be drawn to ‘count their blessings’.  I suppose I should live and let live, but I am drawn to comment…

(I find this type of post hard to write, so I will adopt the literary device of speaking to you, the reader, as though you are the one who was stressed out and – after being inspired and counting your blessings – is now feeling better.)

It’s All Relative

My experiences with my child are extraordinary.  Uncommon.  And have evolved to this point over many many years.  No one handed to me a diapered, tube-fed 11-year-old boy who – despite what well-meaning people want to think – is not improving or getting better.

Rather, I had a complicated pregnancy.  Which required surgery in utero. And then I had a sick baby.   Who turned out to be deaf.  Who then turned out to have multiple significant disabilities, revealed excruciatingly slowly over a long decade – revealed not by things happening, but by things NOT happening.   The only actual shock was the first one – the moment I understood the routine ultrasound was abnormal.  My capacity to absorb information and alter course has increased a million times over since that first shocker, and yours would have too.

Your own experience is your own experience.  You might find it distressing that your child is not doing well in school, or that your baby is colicky, or that your child says she hates you.  And I can fully understand why you might feel like I’m the last person you would want to complain to about it.   (And honestly, I’m too tired to really give you support anyway.)  But you should not dismiss your completely normal stress response because you think I’m worse off.

It’s Disconnecting

People often tell me I’m inspiring.  When it’s other parents in similar circumstances, I can appreciate the sentiment.  And there are occasionally other situations when it feels appropriate and authentic.  But when you said it just now, it made me wince.  Because it was followed by ‘when I face (insert difficulty here), I think of all you have to endure and I count my blessings’.  (Those darned blessings again!)  So what does that mean exactly?  What are you trying to say?  And how do you suppose I might feel, hearing that?  Should I feel good?  Would you?

This might feel unfair, I know, but I’ll say this anyway:  It’s a little like showing up in a soup kitchen, ladling out a meagre portion to a starved, beaten-down man and saying “You’re so inspiring!  Look at what you have to deal with!  I am grateful I’m not like you!”  (Did I just call myself a starved, beaten-down man?)

I suppose what I’m saying is that, even if you’re feeling and thinking it, it’s really not necessary to share it with me.  In this case, the spoken admiration is just your swallowed fear.  If you’re thinking it makes me feel good – it doesn’t.

It’s Not Actually True.  Maybe.  If You Asked You Would Know For Sure.

Please don’t get me wrong – I know that you care for my family and me and are doing your best to express it.  But your statement reveals that you think I have a really hard life – and that always invites pity.  What you fail to realize is that again, it’s all relative.  You, stepping into my life, would certainly take some time to adjust and for sure it would feel like a very hard life.   But that is not the case.  I’m not you and I never was.  I don’t think I have ever thought I have a hard life – but I do have deep joy and sorrow and fulfillment and grief that make for a very full life and I would tell you all about it – if you simply asked.

Maybe you do want to know, but instead you say ‘I just can’t imagine! It must be so hard.”  (followed by “You’re so inspiring!”)

There is no room in this exchange for me to tell you that most times I don’t actually wish my son was different, only that the world was more accommodating.  That my hopes for my son used to revolve around achievements like walking and talking but over time devolved to improved sitting and swallowing and now are simply about not choking or aspirating.  And that actually, the lowered bar brings so much more peace than all that pursuit of progress. There is no opportunity in this conversation to say that I live every day wondering if he is going to live until tomorrow and that if he doesn’t, the depth of my sadness will only be matched by the enormity of my relief.   You haven’t asked me what I’m going to do when he’s adult because maybe you don’t want to hear me say I don’t know, I really don’t know and maybe he won’t even live that long.

It’s not hard to say any of this because it’s all so very true and I live it every day.  Hard would be denying it.

Maybe We’re Not That Different

“Look for the similarities.”  I had a therapist say that to me once.  Many times actually.  Look for the similarities, not the differences.  That’s where you’ll find the healing.  I tend to agree.

The world is full of disappointment, excitement, pain, passion, beauty.  I feel all of it, and I’m quite sure you do too.   Let’s talk about that instead.

(Great Wolf Lodge – Owen, Angus, M and T)

When Owen was younger, my biggest wish for him was to have friends.    I created inclusive play environments, sent him to programs that could seamlessly accept him and his support workers and spoke positively to other children about how Owen was really just like them underneath.  I bought into this notion that if only other kids could see the ‘real’ Owen they would want to be his friend and spent time with him.  They would learn how to sign and use his communication method of the current day (“pick a method, any method…”) – oh, and even use his switch to play turn-taking games!

There is value in these endeavours and in hindsight all were worthwhile, for a whole slew of reasons.

But what about friendship?

I ask myself now, even if this idyllic scene came to fruition, how is this even close?  Sure, Owen has clear facial expressions to indicate his overall likes and dislikes, but nowhere near the nuance of language and/or communication required to establish an independent relationship with someone.  I guess we can define ‘friendship’ any which way, but even the most simple definition of friendship must include the requirements of being reciprocal and voluntary.

Based on this, I can say now with confidence that Owen does not have a single friend.  He does not choose who he spends time with, he does not remember birthdays and he does not lend a helping hand in times of crisis.  And there is not a single person who comes by the house to see Owen who isn’t family or a paid caregiver or from a social services agency.

Here’s what makes this all ok:

Owen experiences moments of connection throughout his day that seem to make him glow from head to toe.    When his brother holds his hands walking down the street.  When Sallyanne or any of his other caregivers arrive for the day and he nearly jumps out of his seat with joy.  When Angus’ friend, D, makes faces at Owen to get a laugh, and announces ‘Owen’s cool!’.

I love and appreciate these moments for what they are – and I don’t pretend they’re something they’re not.  Calling anybody his friend does a disservice to Owen and these experiences because it’s simply not real.  It’s an attribution of qualities that only serves to demonstrate the ‘generosity of spirit’ of the person saying it.  Or, only serves to mask the discomfort of reality.

A happy post for a change: Owen was at summer camp for the past two weeks at a joyful little place called Adventure Valley. AV is not specifically a camp for children with disabilities; it’s a private, non-religious day program in Thornhill, at Leslie and Steeles (here in Toronto), run by a lovely woman named Lynda Fishman.

Lynda is a friend of a friend who believes in the benefits (for all children) of integrating typically-developing children with children with disabilities. (Note to self: why is this still unusual?) She also holds dear the notion of families doing activities together – in this case, siblings attending summer camp together. So, after introductions, and despite the fact that the camp was full for July, she invited Owen and Angus to attend.

I was deeply impressed for a number of reasons. To start, Owen himself is a lot to get one’s head around. He has complex medical needs, requires significant physical accommodation and extensive alternative programming. Lynda knew all this going in, and without asking how or what or why, she just said “come. we’ll figure it out”.

The camp is also expensive. It’s a beautiful private facility on manicured grounds with 2 swimming pools and regulation tennis courts. Full meals provided daily, extensive programming, 3-to-1 staff/camper ratio. 4 x more costly than the local community center camp, and I can see why. (Sending 2 children to camp for 2 weeks (including transportation) costs about $2000.) So here’s the other reason why I was impressed: Lynda asked for funding on HER end – I didn’t have to do it! AV is connected with an organization called Chai Lifeline, which provides programming funding to organizations who seek to include children with illnesses and disabilities and their siblings. Chai Lifeline generously funded Owen’s full camp fee.

There’s much to say about Owen’s experiences at camp, which I will cover in another post. This post is more about Adventure Valley itself. I’ll detail a few things though, so that readers are not making assumptions about what AV does and doesn’t do:

• There were maybe 3 or 4 other children at the camp with 1-to-1 facilitators. None had extensive physical disabilities. I believe there were a couple of other children with learning and/or cognitive disabilities who did not require 1-to-1 support, but who were followed closely by AV’s 2 Integration Coordinators.
• I sent Owen with his new facilitator, Sallyanne. I, not AV, paid her. She was responsible for all of his physical care, his integration into activities and his overall wellbeing. Staff at AV was very helpful when called upon, but Sallyanne did the bulk of the work.
• Owen was placed in his age-appropriate group and participated in the activities that made sense for him. Not all activities could be adapted to include him, although efforts were always made.
• AV is not completely wheelchair-accessible – there is a 2nd floor activity room where many gatherings occur. Often Sallyanne would corral a strapping lad (staff) to help her carry Owen and his chair up the stairs; other times they would opt out of the activity. And yet other times, if the activity didn’t have to happen upstairs, the group would relocate downstairs.
• Sallyanne is a CODA (Child of a Deaf Adult – 2 Deaf parents, in fact). Her ASL is improving, but primarily she signs SEE (Signed Exact English). She is hard-of-hearing and completely functional in an oral/hearing setting. Because of all of this, she was able to interact/communicate with everyone at the camp, and still provide Owen with a quality interpreted, facilitated experience. Some staff knew a few signs, but not enough to communicate well.
• There was not a gender-neutral change room, so ad hoc arrangements had to be made for diapering, changing, rest-times etc.

So all of this to say that AV facilities and programming were not designed with Owen’s particular requirements in mind and several less-than-ideal-but-certainly-good-enough accommodations had to be made. Which of course is fair enough, and makes Lynda’s openness to including Owen all the more fantastic. I will undoubtedly send Owen again. Lynda and I have each identified opportunities for improvements and we will figure them out together for next time.

After Owen’s brutal spring with such a lengthy hospitalization, what a wonderful start to the summer.

Photos of Owen, Sallyanne and AV staff below. (I have photos of him with other campers, but I hesitate to post pictures of children without permission.)