differently wired

Thankful for our ‘team’

This past week we met with Berrik’s school and the psychologists to go over the results of his recent psychoeducational assessment.  I want to start by trying to express how incredibly stressful this process is – for me, and for Berrik.  While the psychologists do their best to make Berrik feel comfortable, he knows he’s being tested, and this creates anxiety.  And I’m sure all moms feel this – when your child is experiencing anxiety (or fear, sadness, joy, etc. etc.) it’s pretty tough not to feel it right along with them.  He is afraid of ‘failing.’  His experience in grade one has given him this context – and in spite of a very successful year in his new school last year, the impact of his past experiences live on and surface in these testing situations.

Fast forward to the results.  Thankfully this is a very collaborative process.  The psychologists came to the school and met with me, Berrik’s teacher, and the family-school liaison counselor.  Having the teacher and counselor there is so critical because they know Berrik and they know what he’s capable of and can (and did) speak to it, lending credence to what likely sounds like crazy, biased mom talk when I speak to it.  Not surprisingly, Berrik’s test results are all over the map.  Average in some areas, low in others.  This is not new, and not unexpected for a kid like Berrik.  The tests are really quite limited in what they can tell us about Berrik as there are so many factors that impact the ability to test different areas.  Berrik is a complex kid – one example would be processing speed.  This is a timed test that requires writing with a pencil.  Timed tests produce a huge amount of anxiety for Berrik – so much so that he almost shuts down completely.  He has developmental coordination disorder which impacts fine motor skills which means writing is difficult and an activity he does not enjoy.  So – the test results suggest a very slow processing speed.  But it isn’t reflective of what he’s capable of, so has limited value.  Is his processing speed lower than average?  I would say yes.  But does it have the severe impact that the number would suggest? No.  This is just one example of several that were discussed at the meeting and will show up in the report.

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Berrik and his two fabulous teachers

This leads me to where I start to get anxious.  In the context of Berrik’s school and his teachers, this information means very little and doesn’t concern me.  His IPP is totally reflective of where he is at, where we are going, and what accommodations are needed to get there.  The school team knows him, knows what to do to get him where he needs to go, and I trust them more than I have ever trusted anyone besides family when it comes to Berrik. But what if that report is in the hands of someone who doesn’t understand the limitations of the tests and therefore the limited value of the results?  The labels and the reports, produced by people who have known Berrik for a total of 2 hours each, but could potentially follow him for the rest of his life scares the bejeezus out of me.

I have written before about labels (Read about it here:  Labels are for Mabel) and I believe they have more of a system value than an individual value, especially for us.  This leads me to why I am feeling so thankful, this weekend and all days.  Berrik’s teachers know him well and spent the past year helping him regain his confidence, gaining his trust (and conversely, gaining my trust) and working on all of the skills that contribute to his ability to find success at school and in life.  They talk about Berrik’s availability for learning, which I just love.  The goals for Berrik (and all the kids) are not just academic.  The goals are to do what needs to be done with and for Berrik to increase his ‘availability for learning’, at which point the academics will follow.  Reminds me of this post Kids will do well…  I love this for so many reasons.  It is why Berrik is doing so well in school. If only this approach could be taken for all kids, everywhere.

I commented in the meeting that I have had times where I felt hopeless and I had such fear for Berrik’s future. But the school, the teachers, the team approach, and the full recognition of Berrik’s potential and the desire to figure out what makes him most available for learning has allowed me to trust, hope and dream once again.  I cried in that meeting.  I am crying again while typing this.  It’s hard to admit I lost hope at times, because that makes me feel like a bad mom.  I know that if we had not found this school, the trajectory of Berrik’s life would have looked very different and the thought of that brings me to tears.  It also leads me to think of all the kids who struggle like Berrik, who haven’t been as fortunate.  It’s heartbreaking.

All this to say that while the tests and reports and labels all serve a purpose, for Berrik they are almost inconsequential in terms of his schooling because he already has the support and resources he needs.  When I left the meeting, I walked out with Berrik’s teacher.  She gave me a hug and said, “We are on your team Chandra.”  I knew it, but it is always good to hear the reminder.

We have a big team.  The school, my friends who work ‘in the business’ who really ‘get it’ and let me vent and ask questions, my sister in law who is also ‘in the business’ and has been a source of so much support and information – all in the context of her love of Berrik, my brothers who just seem to ‘get’ Berrik and know how to make him feel special, my parents who build Berrik up in so many ways and support me as I try to advocate for him, my girls who show Berrik what unconditional love looks like – with all the joy and annoyance that exists in any sibling relationship, my friends who just listen, and all of our extended family.  I remember Kevin’s dad once commenting in the context of a conversation about Berrik and his ‘labels’ that he didn’t care about that.  “He’s my grandson and I just love him.”  Period.  One sentence to get right to the heart of it.

And while this week has been low on sleep and high on stress, I know that everything will be ok.  Because we have the best team.  And for that, I am thankful.

Just a few members of our team:

Kids will do well…

“Kids will do well, if they can.”  This is a quote from Dr. Ross Greene, an American psychologist.  He believes that “Kids will do well if they want to” is a philosophy that is held by many, but he says it is wrong.  Dead wrong.  Think about it.  He’s right.  It makes so much sense.   He talks about rewarding kids for desired behaviour, and punishing undesired behaviour and how that method is based on the assumption that kids don’t want to do well, so therefore we need to make them want to by motivating them with positive and negative reinforcements.  When you consider that kids do well if they can, you then realize you need only to figure out what is getting in their way and work to remove those ba.

Obviously it’s not simple.  But it IS sensible.  At least from my perspective.  And we are living it.  Berrik struggled in a system that seems to be set up with the philosophy that kids will do well if they want to.  He was absolutely rewarded for desired behaviour (the very few times he exhibited the desired behaviour) and was regularly punished for undesirable behaviour.  There was many a conversation between myself and his teachers about medication – because medication would help him fit the system, ultimately.  (EDIT: Please note that I am not anti-medication to treat symptoms of ADHD (or anything else for that matter).  In our situation at that time, I didn’t feel like it was the best solution for Berrik and I was concerned that it was viewed as the ‘only solution’.  We each are living our experiences and those who have used medication as one of the strategies to help their child do well are doing what we are all doing – trying to allow our children to do well.) There were just as many conversations about reward systems, and removing of privileges. And I say this with no negative feelings towards the teachers. With the exception of one, Berrik’s teachers truly seemed to want to help Berrik achieve success. But with many many kids per class and extremely limited resources, it seemed the only way was to make the kids fit the system rather than have the system fit the kids.

Enter private school designed for kids who do not fit the system.  A school designed to allow the system to fit the kids.  A school where every single person from the Board to the school admin believe that the system should fit the kid, and that kids will do well if they can.  In Berrik’s case, he needs a little extra support to keep him on task.  He was speech delayed as a toddler and this still impacts him as well.  His developmental coordination disorder makes things like writing more challenging.  So, he works with the speech language pathologist weekly.  He works with the OT twice per week.  And his teachers are making accommodations that make it easier for him to do well.  Not surprisingly he is doing exceptionally well.  Because kids will do well if they can.

 

I was at the school’s annual AGM listening to one of the OTs and the family counsellor present about a new program that is being piloted this year.  They referenced Dr. Greene’s quote.  And they talked about developmental age vs. chronological age.  It really resonated with me and if I needed one more reason to know that I have my boy in the correct school for him, this was it.  Think about it.  Chronological age is a pretty arbitrary thing to use to determine things like school grade, ability to drive, ability to drink or smoke marijuana, etc. etc.   Think about the kids you know and all the different phases and stages of development.  Even amoung my own three kids, their developmental ages vs. chronological ages have varied by quite a bit.  My kids’ friends vary dramatically as well.  Take any handful of 12 year olds (or 15 year olds, or 3 year olds) and compare their developmental age.  Some are incredibly mature in some areas of their lives, and some are developmentally younger. McKenna didn’t walk until 19 months.  She never crawled. Her physical development was on the edge of what would be considered ‘normal’ and she was way behind her peers.  Wasn’t much we could do about it, so we just let it be. She’s a strong runner and a competitive dancer now.  Development happens when it happens and while it should progress, the rate at which it progresses varies and shouldn’t be labelled or used as a predictor of future ability.  What is important to note as well, is that kids may be developmentally more mature in one area of development and not in others.  Dr. Greene talks about this as well. If we pay attention to developmental age and give kids what they can handle based where they are developmentally, they will do well.  It’s not unlike giving a first year resident surgeon an incredibly complex surgery on her first case.  The outcome likely won’t be all that good.  Why are we surprised when we ask kids to perform tasks beyond their developmental ability and it doesn’t go well?  It often results in behaviors that we see as negative.  But actually it’s quite normal and the kid is not the problem.

So the next time you see a kid (or your own kid) behaving in a way that isn’t meeting your expectations, think about your expectations. Are they developmentally appropriate?  Stop comparing your kids to their peers.  Its not helpful or useful.  Meet kids where they are at, and they will do well. Because kids will do well if they can.

That’s SO weird!

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This guy.  Undeniably talented.  Clearly intelligent.  When I heard him make this speech I felt a bunch of emotions bubble to the surface.  The most prominent was gratefulness. Grateful that this guy with a voice and a huge audience of young people uses that voice to say things like he said.   Grateful for the acknowledgement that different is a good thing and that it can preclude greatness that is measured in your impact on people and the world.  Berrik has been called many things in his short life by people who are lacking in humanity and kids who learned this behavior from the world we all live in.  I’m sure he will be called things that cannot be said on TV also at some point (although to be fair, most of us will be!).

Ultimately though, the thing I am most grateful for is that Berrik is in a school where being ‘weird’ is the norm, and is celebrated as part of each kids’ individuality.  In a world where kids are all trying to fit in and be the same, it feels like an alternate universe to enter Berrik’s school and classroom.  No one asks him to be like anyone else.  The school team seeks to figure out who Berrik is and then celebrates his strengths AND his weaknesses.  Because when you step back for a moment and consider my sweet boy as a whole human being, he’s pretty darned amazing.  So if all the parts of him make up the fabulous sum of who he is, then can any of those parts be seen as negative?  Nope.  At least not at school.  It’s quite fascinating to be in the classroom with Berrik and his classmates.  It’s difficult to explain but you can feel it when you’re there.  So completely different than in his former school classroom.  Or the classrooms of my daughters over the years.  The best way I can think of to describe it is that the typical tensions related to who are the ‘smart’ kids and the ‘jocks’ and who fits into all the other ‘labels’ or ‘categories’ that are common in a regular public school, doesn’t seem to exist.  As his mom, it’s most noticeable to me in my own child.  Berrik is fully, authentically, unapologetically himself in this classroom.  He is free to be.  It doesn’t occur to him to worry about what people think because there seems to be so little judgement.  And when you don’t feel judged, I think it makes you less likely to judge others, so all the kids seem to be authentically themselves. Like I said, hard to describe.

Back in the days where Berrik was undergoing some assessments related to ADHD, the psychologist asked how we were managing at home.  I recall being a bit confused by the question.  While I recognize that many kids who are differently wired can have symptoms that result in or appear to be behavioural issues, this had never been an issue for Berrik.  And even though we have two neurotypical kids, it never really occurred to me to consider the impact of Berrik’s differently wired brain as something needing to be managed in a special way within the context of home.  Did he act the same as the girls? No.  But the girls act differently than each other also.  Berrik is just Berrik, just as Avi and McKenna are also their own people with sometimes surprisingly different ways of being from each other and from Berrik. We are just 5 people who are each very different from each other, but the sum of those parts is a pretty great little family.

How fortunate we are that our little ‘weirdo’ can live his life in this way.  It’s not that he gets to be unaware that he’s different from some of his peers, it’s that he has learned that different isn’t something negative, and in fact just might be the coolest thing about him.

Potential – What’s your maximum?

She has so much potential.  He’s not living up to his potential.  With work they can reach their maximum potential.  All common in the vernacular of our current world.  I heard it (and said it) in my work life as a manager.  And I hear it in the context of my children all the time.  Adjudicators at dance say it.  Avi’s choir director says it.  It’s something people say frequently to either indicate that someone is not doing as well as expected but could improve with work (this is usually meant to be encouraging), or to indicate that they are doing as well as could possibly be expected, (usually with a negative connotation in that the expectations are kind of low).

Potential is defined by Cambridge as:

1. possible when the necessary conditions exist

2. someone’s or something’s ability to develop, achieve, or succeed.

When I think about potential of a human (or lack thereof), I like to combine these two.  Someone’s or something’s ability to develop, achieve, or succeed is possible when the necessary conditions exist.  Take Berrik for example.  (I know, I always take Berrik for example). The more I learn about Berrik and put the necessary conditions in place, his ability to develop, achieve AND succeed increases.  This can be applied to any human, neurotypical, learning disabled, physically disabled, cognitively disabled or otherwise. Incredibly gifted athletes make the Olympics because they and their parents sacrifice many other things to create the ‘necessary conditions’ in the form of diet, training, etc. For some the ‘necessary conditions’ may be more complex than others, but generally speaking, this is how it works.  For all of us.  Even bacteria or viruses develop and succeed when the necessary conditions are in place.  Remove those ‘conditions’ either through medication, diet, or other means, and the bacteria or viruses fail to thrive.  Mold…another good example.  My sourdough bread develops and succeeds if I put the necessary conditions in place.  I could go on.  (and I usually do.)

If you google “quotes about potential” you will find a large number of quotes referring to ‘maximum potential’.  I don’t care for these quotes.  I would argue that there is no such thing as maximum potential, because that suggests there is a limit, and that somehow we can predict it.  Having a child with learning disabilities magnifies this idea of ‘maximum potential’ and the risks associated with putting a limit on potential.  More than once in Berrik’s short school career, someone has put a limit on his potential, either verbally or in writing.  I believe that labels contribute to this tendency toward predicting and limiting potential.  It’s not the only factor, but it can provide a catalyst in a system that is not well resourced for kids who don’t have an easy time in a classroom environment.

Nothing makes me more frustrated than someone assuming a child (particularly MY child) has limited potential.  And if I worried about Berrik’s potential in the past, I worry much less now.  The gains he has made this past 10 months have been mind blowing. I wouldn’t have expected so much growth in such a short amount of time.  And despite a major shift in my own expectations, he continues to surprise me.  And I continue to shift my expectations upward.  Most importantly, I believe his potential has no limits.

Sir Winston Churchill once said:

Continuous effort – not strength or intelligence – is the key to unlocking our potential.

I love this quote.  I love that it doesn’t talk about maximums.  I love that it reminds us that success (however that looks for each individual) takes continuous effort.

As I type this, Berrik is writing a story and is on his third page.  In January he started ‘journal writing’ with one simple sentence.  Today he is using a planning template to plan a story using topic sentences, details, transitional language and powerful endings, and is writing; willingly, albeit slowly at times.  I believed we would get to this point eventually.  In January I would not have believed we’d be here already in April.

img_8508So often, particularly with kids with differently wired brains, learning disabilities, or any other disability, we are quick to focus on what they cannot do.  Often teachers/therapists will talk about strengths, but the system (and sometimes the imposed limitations on perceived potential) result in lack of ability or desire to truly build on those strengths.  I have said this so frequently I feel like a broken record, but despite the fact that we have had many positive (and negative) experiences with teachers, speech therapists etc., the people at Sound Connections are the first to truly believe that there is no limit to Berrik’s potential.  There is no discussion of labels.  It’s not relevant.  Each week we look at where Berrik is at and then we move forward based on that.  I am frequently consulted on what I think Berrik needs.  And Annette uses her considerable experience and expertise to determine what to do next, how fast to go, when to circle back.  Having had years and years of experience working with 100s and 100s, possibly 1000s of kids, she knows that ALL children have potential.  She believes it and you can see it in her program, in her approach.  As a mom who believes this of her child, I can’t tell you how critical it has been to know that someone else believes it too.  Sound Connections, homeschooling, diet, exercise….these are some of the ‘necessary conditions’ that I am putting in place so Berrik can continue to develop, achieve and succeed.  And that has been potentially (see what I did there?) life changing.