the hospital world according to aaron

Aaron had day surgery IMG_6304today at our children’s hospital.  In an effort not to be a ‘secret shopper,’ I try to take off my family centred care hat when I’m in the hospital with my boy.  I focus on him as opposed to critiquing every single interaction.

Yes, the experience wasn’t perfect – the clerk calling me to confirm Aaron’s time didn’t mention that the entrance to the day ward had been moved in the midst of renovations (so I got a bit lost), I was called ‘mom’ an awful lot, one of the nurses said:  it is so good he’s so high functioning (!?) but overall, the clinical care was exceptional, everybody was respectful towards Aaron, and we were able to go home five hours after we arrived.  That looked like success to me.

My youngest son has had four surgeries in his life, and this was the first time I did not push the pre-sedation request.  Aaron was relaxed and joking with the nurses, so I thought – let’s just see what happens if he doesn’t get sedation before he goes into the OR.  I warned him there would be lots of people and bright lights in the OR, and he was perfectly fine.  (I now wonder if the pre-sedation request was more for me?  Mom needs sedation).  It is fortunate that our hospital has parental presence at induction, which means I was able to go into the OR with him until he was asleep.  I teared up a bit when he was put under, as I always do – and the kind anaesthesiologist said to me:  we will take good care of him.  And that they did.

What is more interesting about this brief experience in the hospital is Aaron’s perception of it:

He was annoyed that he had to wear a dress (see photo above).  Apparently the hospital switched to gowns for kids and don’t use pajamas anymore. He had to wear a mask because he had a cough.  Sensory-wise, that was not great – it was scratchy and bothered him and he kept taking it off.

Despite the fact we explained the going to sleep thing, the first thing he shouted when he woke up after surgery was:  I AM NOT DEAD!  I’m horrified he thought he might have died – I am constantly in awe of how this kid’s mind work.

The day surgery unit was BUSY and unfortunately, some of the kids didn’t wake up well after surgery, and some children were crying. There was also a considerable amount of construction noise – hammering and drilling.  I don’t like hospitals, Aaron told me.  I asked why.

I don’t like these screaming kids! he explained.  He added, the food is disgusting.  I want to go home.   Ask him about his own patient experience, and this is what you get – he is a fountain of truth.

I’m grateful for his uneventful experience.  I’m also thankful for the folks at the hospital who cared for him:  the clerk at reception, the LPNs, the RNs, the porters, the surgeon, the OR nurses, and the anaesthesiologist.   They all had smiles on their faces, spoke to Aaron dorectly, and did their jobs quickly and competently.  I feel fortunate that Aaron’s experience included such caring health professionals, and that he is home safe and sound.

i just want a hug

what kids need

what kids need

One of the many things I am going to miss from Edmonton is the Family Inclusion Group that was started by five moms at my son’s school.  Four of us have kids who have Educational Assistants, and one other mom has typically developing kids, but is interested in inclusion, and creating kind and caring school environments for all children.

That mom’s name is Amy Elliott, and she happens to be a Speech Language Pathologist.  Last night, our group co-hosted a presentation from Amy and Registered Psychologist Pamela Barrett called Beyond Temper Tantrums:  Uncovering Behaviour.  

Behaviour is a hot topic in our world.  This talk gave concrete strategies for both parents and teachers when working with children of all kinds.  Over 30 folks showed up, including our school trustee and administration.  (Our organizing group was very pleased.  We have been searching for a topic that wasn’t just a ‘special needs’ topic – one that would appeal to a greater audience).

Amy and Pam gave a professional, practical and passionate presentation.  I’ve been a mom for almost 22 years, and I’m still learning every single day about how to be a better parent. Here are some of my own take-aways.

  • There is always a reason behind behaviour for all children under 12.
  • It is our job as parents and teachers to be curious about what those underlying behaviours are.
  • Punishment is only a bandaid solution.  Unless we find the root cause of the behaviour, it is going to continue on.

They said that all children need to: feel a sense of belonging,  be loved, have a purpose and  feel important.  (At this point in the presentation, my eyes are welling up.  I was thinking YES!  And all that must NOT be conditional on a child exhibiting ‘good’ behaviour).

Some great points for educators:

  • You can’t teach the mind until you have the heart – Dr. Gordon Neufeld
  • Kids won’t respond to people they aren’t attached to
  • Encouragement is more effective than punishment

A memorable quote for me was:  A misbehaving child is a discouraged child.  I’d also add to that – a misbehaving child is also a misunderstood child.  My youngest son has flourished in environments where people have taken the time to listen to him, and uncover the reasons behind his behaviour.  I truly believe that all his behaviour is communication – and he is always trying to tell us something.  It is up to us to figure out what that is, and give him the tools so he can communicate it more effectively himself.  This can be done through social stories, visual cues, helping him identify emotions, and simple reminders to breathe.

Amy and Pam stressed that having empathy for the child and what they are going through is absolutely essential.  For like the porcupine in the picture above, the more kids push us away, the more we need to demonstrate our love and understanding.

Their message of love and belonging is a powerful one.  I hope it gets spread throughout the schools with Edmonton Public School Board.  As Amy and Pam said:

The need to belong, to be securely attached, to feel important and worthwhile and to be loved is hard wired into the human body.

When we see behaviour that does not contribute to the fulfilment of these needs in healthy ways, let’s be curious about what’s going on and wonder how we can help the individual get back on track.

Our kids are worth it, don’t you think?

Edited to add:  These fabulous resources were also shared:


a glimpse into the future

Trying out a BMW M6

Trying out a BMW M6

Aaron is almost 12 years old now.  That means that adulthood is a mere six years away.  I know how fast those years will zoom by, based on my experience from my two other children, who are now young adults.

I keep half an eye on employment opportunities in the disability world (but to be truthful, I’m not ready to fully look at adulthood yet).  I want Aaron to have a job that builds on his strengths, and is something he really loves to do (the same as my other children).  Right now, he loves luxury cars.  He can identify all makes and models of the most obscure fancy car, and he tells me that he is going to work in a Mercedes dealership.

Our Corrie shared these three fabulous websites of three young men with autism who have established their own businesses, doing what they love to do.  If this is a glimpse into Aaron’s employment opportunities, the future looks pretty bright to me.  Bravo Brad, Anthony and Aaron – if you live in Edmonton and area, please consider supporting these local businesses:
Made for you By Brad
Anthony at Your Service
Lego Art by Aaron

how to become a family centred care hospital


Last week, some of my friends from the Stollery Children’s Hospital hosted a lovely evening for me with wine and chocolate.  I left my position there two years ago, but I have been very fortunate to have retained treasured friendships with staff and family members that I met while I was there.  We naturally started reminiscing about how family centred care formally started at the hospital six years ago.

It began modestly, with one leader and one mom.  The leader brought the mom to a senior management meeting, and the other senior leaders climbed on-board.  Four other moms who had experience at the hospital with their children started connecting in coffee shops and in hotel hallways at conferences.  The leader brought in two moms to sit on an interview panel to hire a dedicated Family Centred Care staff member.  There was a Planning Day with the senior executives and five moms.  (Dads became involved later, don’t worry).  A deadline to start a Council was set.  Council recruitment began, and out of many wonderful candidates, both a Council and a Network was born.  A specialized NICU group started up.  The work began slowly, with successful family presentations to staff audiences.  A newsletter was established to keep everybody informed about volunteer opportunities.  Staff who were champions in family centred care were encouraged and recognized.  Family representatives showed up on hospital committees, more interview panels, and capital design projects.   They began reviewing policies and educational materials.

During this time, the sharing of family stories at presentations continued.  The family experience become more understood by staff and physicians through this storytelling.  (I believe that compassion in health care comes from this understanding).  Families partnered with staff to present, and began understanding the staff perspective, too.  Families spoke to students, to influence young minds early.  Families came to management meetings.  A strategy day was held, with fifty participants.  Priorities were identified to help guide the work of the family centred care staff, which was growing thanks to Foundation support, and successful grant applications.  Some priorities were harder to implement:  like peer support, and transition to adulthood.  The staff and family reps did not give up.  The good work from the hospital slowly began to be communicated outside their walls – at national and international conferences, in the media, and in written articles.  Research and evaluation initiatives began.

Last year, family representatives put in over 1,500 volunteer hours to advance family centred care at the Stollery Children’s Hospital.  There are currently 128 family members and 284 staff on the Network.  The culture at the hospital has changed – the family voice is more consistently respected and heard throughout the entire facility.  Families are included in conversations both about their children’s care and at the operational level.  Staff and physicians are celebrated for excellence in family centred practice.  The Stollery Children’s Hospital is now a family centred care hospital. (For more details about the family centred care work done this past year, check out their annual report here).

I was that first mom six years ago who worked with that first leader, whose name is Laurene Black.  We are both passionate and stubborn people.   Laurene was at my party last week.  She’s one of my true mentors; I have learned so much from her. She’s now moved onto making change in the challenging world of children’s mental health services.  I’m moving to Vancouver to be the Family Advisor at Sunny Hill Health Centre for Children.

The hospital’s family centred care work so long ago quickly became more than just the two of us – and that’s how it should be.  It continues today with great momentum and flourish, thanks to the unwavering hard work of Heather Mattson McCrady, Christie Oswald, and dozens of staff and family volunteers. Nothing stays the same, but the good work continues on.  As Laurene likes to say:  just keep your head down, folks, and keep going.  

Thank you Laurina, Karen, Marni, Tiffany, Heather, Laurene, Shelley and Karen for my celebration.  I feel very much loved.  I’m in awe of the work you’ve done, and excited to see what the future holds for us all…




for mom writers

I’m a mom who is a writer and a writer who is a mom.  I promised myself that I would not write about my decision to not write about my adult children, because frankly, this kind of defeats the purpose of my promise, doesn’t it?

Thankfully, Andrea Jarrell wrote this gorgeous essay in the Washington Post called Why I’ve Quit Writing About My Children for me instead.

In it, she says:  My growth as a parent has been to see that I cannot impose my own narrative on theirs, on the page or in real life.

Read this essay, and it will give you a long, deep pause.  I do tell stories about my youngest son, who has Down syndrome, in my quest to open up conversation about having a child with a disability.  But one day I’ll stop telling his story too.  Because there comes a time when our children are no longer children, and it is their decision to share their stories with the world (or not).  Thank you, Andrea, for this wise reminder.

searching for schools

IMG_5174I have three kids.  My eldest two are ‘typically developing’ kids.  When we lived in Winnipeg, I sent them to the school down the street.  It was a Hebrew school with an English stream.  Then when we moved back to Edmonton, I sent them to the community school close to our house.  I then got remarried, and moved into a new neighbourhood with my new husband.  Someone told us the elementary/junior high school was ‘good’ so we sent them there.  They went to the feeder high school.  Then they both graduated.  That’s the end of their school story.  My poor eldest kids were shipped down the road to the school of convenience without much thought from their mother.

The school system calls our third, and youngest kid, ‘coded.’  Or ‘funded.’ Or ‘with designation.’  Or ‘special needs.’  Or a ‘diverse learner.’  Or a ‘student with a difference.’  We just call him Aaron.

School for our kid who happens to have Down syndrome is infinitely more complicated.  With my other two kids, there was an assumption that I sent them to school to be safe, be taken care of, and to learn.  And that’s what ended up happening.  It wasn’t perfect, but it was fine.  With Aaron, these assumptions do not exist.  Having a kid with a disability in a regular school and regular program is exceptional here in Alberta.  We have special education programs and schools in this province.  Inclusion is not a given.  Families are often forced out of community school settings and strongly encouraged to look at special education options.  They are told:  we don’t have enough support for your child.  This isn’t a good fit for them. Go somewhere else.

We chose Aaron’s current school in Edmonton three years ago.  We personally knew the Assistant Principal well, and we knew that he believed in Aaron.  I remember when I first dropped Aaron off at school, he said to me:  “We will take good care of him here.”  And that they have.  As an added bonus, Aaron has also learned and grown academically too.  Last night , when we were playing a board game, Aaron had to answer:  what is 25 plus 5?  Thirty, he replied quickly.  Last week, he excitedly took a Harry Potter book out of the school library.  BOOM.  Mission accomplished at his school that tries very hard to accept these kids with differences who show up at their door.

Now we are moving to Vancouver.  Aaron is in Grade 6.  We have to find him a new elementary school, until he’s in Grade 8 and transitions to high school. This has been an interesting journey.

Instead of picking a neighbourhood and then simply sending Aaron to the local school, we have gone through many hours of research of different school districts.  We settled on Burnaby, which has a good reputation for doing inclusion well, and for supporting their students and teachers.  We made this decision based on many conversations via email with local disability community champions.  We also have friends who are happy with their daughter’s school experience in Burnaby.

So we opted out of the more-hip Vancouver locale for the municipality next door.  Burnaby is chock full of small neighbourhood schools that have closed boundaries.  That means there is a tiny attendance line drawn around a few select streets in the neighbourhood.  You have to live in the neighbourhood to get into the school.  This was particularly challenging in a tight rental market.  There were not a lot of options for us (and our cats) to live in.

The deal with British Columbia, in general, is that all kids go to their neighbourhood school.  For the most part, there are no special ed programs to push kids into.  BC is committed to having to educate ALL the kids in their community, no matter their needs. (Now, please note that I think special ed sites & programs can provide awesome experiences for children and families.  But if there is always a special ed option in your school district, asking that your child be included in a community school can be challenging).

This brings us to the chicken and the egg scenario.  We had to find a rental home in the catchment area of a good school.  Our challenge was to define what a good school means for Aaron.  So here’s the process we embarked on…

In January, we had seven phone interviews with North and Central Burnaby principals.  I chose the seven schools based on reputation and their ‘special needs’ rate – I didn’t want Aaron the only kid with needs in a small school.   All the principals responded immediately to my initial email contact.  My husband and I were nervous calling the first principal.  What if he didn’t want our son?  What if he directed us to another school?  What if we had to beg to get Aaron in and sell him as being low need and as ‘normally’ behaving as possible?  (This happens all the time in Edmonton).

Six of our seven principal interviews turned our fears upside down.  The principals were friendly and welcoming.  They asked about Aaron and what he was like.  They told us how they included kids with all sorts of needs in their school.  They talked about learning resource teachers, and Educational Assistants and Speech Language Pathologists who had offices at the school. They apologized for the lack of funding compared to wealthy Alberta.

A couple of times I almost dropped the phone.  Alberta has a lot of money, yes.  (Well, but the price of oil is falling, FAST, so the bust has begun).  But Alberta does not put its money towards supporting their most vulnerable citizens.  My home province’s funding levels for Educational Assistants are considerably lower than Burnaby’s.  Like about FIVE TIMES LESS than Burnaby’s.  Now, we know that funding isn’t everything – it is how the philosophy of inclusion is executed that’s important.

I knew from the first three minutes talking to the principals, what the culture and leadership was like at the school.  I asked them:

1. Tell us about your school 2. What is your philosophy about inclusion – academic and social/emotional elements  3. How do you partner with parents? 4. What would a typical day look like for Aaron? 5. Do you have any experience with kids with Down syndrome? 6. How will his support be assigned? 7. Can we have an in-person visit on February 9?

We discarded only one principal.  She was on and on about how much Aaron would cost her, and it took all my polite-Canadian strength not to hang up on her.  But the other six!  They said:

We believe in kids’ social and emotional needs.  We focus our resources on kids.  We believe in being approachable and open to parents.  We do a good job for kids with special needs here.  Our kids are great.  We have flexibility in our funding for your son.  If your son likes soccer, he can play inter-murals at lunch!  We teach students to be responsible for their own emotional learning.  We are working towards independence for all our kids.  We have a can-do attitude.  I’d move here if I had a kid with special needs.  

We travelled to Vancouver last week.  With the help of a realtor, the rental gods shone down on us, and we secured a home in the neighbourhood of one of our top schools.  I cannot tell you the relief that I felt when we signed our tenancy agreement.

We went for a tour of Aaron’s new school.  The principal spent a stunning 90 minutes with us, chatting with Aaron and introducing us to teachers around the school. He proudly showed us the classrooms, and the services for all their kids.   Aaron was silent during the whole tour. (I told him to be polite, and I think he interpreted this as don’t say a word).  I asked Aaron afterwards:  what did you think of the school?  It is awesome, he said.  We are going to run with that, folks, to get us through this big transition for our transition-adverse boy.

Because choice of school for our kids means a lot – it isn’t just the building down the street.  It is where our youngest boy will learn, flourish, grow, make friends and be independent.  None of this comes easy for him, and he needs all the kindness, compassion and support he can get.  I’m optimistic with a touch of caution, and I know that the proof is in the pudding.  But so far, so good.  Thank you, Burnaby, for your warm welcome and your exceptional first impression.