Tag Archives: labels

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.

IMG_0009

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.

Labels are just labels. But what does it mean for us?

Graphic credit toClick here for reference

I am always searching for more information, more ways to teach, more literature to help me understand what Berrik faces on a day to day basis, in hopes that I can help him manage the challenges, and build on the strengths.  One of the things I find difficult is trying to explain what is going on with Berrik to family or friends, who understandably do not really get it.  And how could they?  Most days I don’t feel like I totally ‘get it’ either.  I will admit that from time to time I feel defensive; and I find myself using defensive language to explain what we are doing or what is going on with Berrik.  On good days, I don’t give a hoot what anyone thinks, as I can see the progress and the potential in my child (all my children, for that matter). On bad days, I will feel defensive and protective and incredibly annoyed by the ‘sympathetic’ comments, or what I perceive to be falsely encouraging responses from people who have asked me about how Berrik is doing.  I hate feeling defensive, mostly because I know there is nothing to ‘defend’, which invariably leads to feeling guilty, since I can intellectualize that these defensive feelings I have are likely rooted in my own doubts and fears.  But let me be clear…. I have doubts and fears about the girls as well.  I think this is a normal parenting response….I assume all parents have moments where they worry about the future for their children.   That said, the girls are thus far on a ‘typical’ trajectory, and therefore it is easier for me to visualize what the future will bring (as naive as that is considering how young they are and all the chance and deliberate occurrences that can alter one’s path, repeatedly).

I came across an internet article that fairly effectively describes Berrik’s ‘labels’, DCD and Associated Disorders.

Understanding what, is helpful.  But the meat of the situation is the ‘so what?’.  How do these comorbid conditions impact Berrik?

Where to begin?  Developmental Coordination Disorder (DCD) – for Berrik, this manifests the most challenges in printing.  He was a bit late learning to dress himself, zip zippers, button buttons, brush teeth, feed himself with utensils, etc.  But he has all that figured out and manages very well in that regard.  He’s a bit awkward with gross motor skills at times, but generally can function well enough.  Definitely some challenges on the playground with some kids that are super athletic and appear to be part gorilla, part cheetah for how they can run and swing around the park, but generally speaking, Berrik holds his own.

Printing legibly is very difficult for Berrik, but he has come a tremendously long way.  His printing is actually quite neat now. He strongly dislikes printing (truthfully he HATES it, but I am encouraging him not to say ‘hate’…haha).  We practice daily.  Every single day.  In any way I can find to motivate him.  We write cards to his best friends next door, or fill in the blanks on an order form for an app or website he would like to join (I print the screen where you are asked to fill out your name etc., and make him fill in the blanks on paper, and then I transfer to the screen).  Another example of a situation this morning, “Mom, can I have a banana?”  “Sure, but this is a restaurant and you have to write down your food order on a paper.”  “Sigh.  You make everything difficult.  I think you like to do that to me.”  “Yes, sweets, that’s my job.” <insert eye roll from Berrik here>.  “Fine.  I’ll write it down.  Are you happy?”  “Yep.  I feel such joy in this moment.”  <another eye roll and audible sigh>

So…when you’re slow at printing, it’s easy to imagine how that impacts everything you do in school.  Slow to write the answers on a test, even if you know the answers…  makes it tough to demonstrate your knowledge.  Slow to write a story in Language Arts… so slow that it feels pointless to even try, as you are on your first sentence when other kids are done the whole assignment.  Homeschooling makes this a lot easier as we can take all the time we want.  And if we are assessing scientific process and critical thinking, I scribe for him.  Ditto for if the focus of the lesson is on telling a story with a beginning, middle and end.  I’ve been told by some teachers not to do this as he needs to be able to print.  I disagree with this philosophy.  We are working on printing, and he has/will have the ability to print.  He may never be fast at it.  And it will likely be a non-issue in the future.  The only time I EVER use a pen these days is when I’m working with Berrik.  I type or text or voice type everything.  He will too.  But he ABSOLUTELY needs to have the ability to process information, tell stories, think critically, understand concepts etc.  So if I have to do the writing so that he can achieve these goals, then that is what I will do.  (I almost went back to rewrite that last bit, since I can see how defensive I sound…. but I decided to leave it in there for demonstration purposes…)

ADHD, LD and SLI – these impact every aspect of life.  Berrik is better with attention than he was pre-diet change etc., but he still is challenged to hold his focus for long periods of time.  This manifests in reduced ability to follow multi-step directions (also impacted by speech and language issues), because he either doesn’t hear all the directions, so has no idea what he is supposed to do after step 1 & 2, or he did hear them, but gets distracted half way through whatever is supposed to be doing and ends up doing something completely different. Add to this the fact that he doesn’t always understand the meaning of some of the words in the directions, and now he’s both confused and distracted…  Think about when someone is talking to you and you have no idea what they are talking about (say, for example, your husband is an engineer and is talking about HVAC and electrical set up in a skyscraper… that is just a random hypothetical example, of course).  It is so difficult to stay focused and engaged.  That is a big challenge for Berrik.  As soon as he no longer understands what the conversation is about, he tunes out completely.  Most of the time I can’t tell whether it’s the SLI, ADHD, or a LD that is the root cause, and most probably it is a combination of all of the above.

I am constantly on the look out for strategies to single out and/or address the issues individually to see what will improve the outcomes.  Having Berrik repeat instructions back to me as I say them helps with short term memory, and focus.  If he can tell me what he’s supposed to do by repeating my words, but still isn’t sure what to do, then I can tell it’s likely a receptive language issue.  If he’s fidgeting and not engaged with me, then I can see it’s an attention thing.  Of course it’s never so simple as being one issue vs. another.  And to be clear, it’s not like this is an issue with every thing we do all day long… it just comes up in certain situations.  (Thank goodness, because it’s exhausting).

In our math studies, the SLI causes us much grief.  With the help of the ever amazing Sound Connections people, we realized that Berrik doesn’t understand the meaning of some critical math language.  What makes it more interesting and a bigger challenge, is that he understands words in some contexts but not others and the only way to determine where the deficits are is to go through each word in many contexts to tease out the areas for improvement and then work on them, one by one.  For example.  In one activity Berrik was asked to identify a row with ‘more’ of something in it.  It was a multi step problem that likely contributed to the issue, but in that context he didn’t understand what he was supposed to do.  Once he was shown what to do, he had no problem replicating it in different contexts.  So that tells us that the issue was the understanding of the words, not the actual computation of the math skill.  But on the same day, he was able to articulate and demonstrate the concept of more in a few different ways, and this occurred quite randomly in the context of some other activities we were doing.  This was a big clue that we needed to break down every ‘math’ concept word and identify exactly what didn’t connect for him, and then work with him to make those connections.  If this had not been pointed out to me, I would have never realized what was going on.  I would have assumed he understood the concept of the term ‘more’ because he does understand it in many contexts.  More, less, most, least, except, either, neither, add, subtract, plus, minus, multiply, divide, double, triple, ahead, behind, above, below, first, second, middle, last, high, low…..  these are just a few of the words that we will work through one by one.  The beauty is that some he will have no problems with, and the more foundational words he understands, the easier future ones will be to explain, as we can use the previous words to help explain the future ones.  And through all of this experimenting, his foundational math skills are being worked on, so we are accomplishing many goals with this exercise.  This both overwhelms me and gives me such hope.  All of these foundational skills will be critical to his future, and had I not stayed home with him this year, and had my wonderful friend Barbie not mentioned Sound Connections to me, we likely would have never realized these issues existed, and maybe, we would have eventually started to believe the teachers that Berrik just isn’t that smart. (Even typing that makes me tear up.  Oh the struggles this kid has endured).  I always feel like I need to put in a caveat in defense of teachers when I am writing about Berrik.  I don’t blame teachers for thinking Berrik wasn’t very smart.  I strongly believe teachers are under resourced.  Even as his mom, spending hours every day one on one with him, I find it hard to understand what is going on at any given time.  He is progressing so well this year, but it’s because I have time to spend several hours per day one on one with him, adapting and adjusting based on his specific needs on any given day.  Teachers obviously do not have this luxury.  So if anyone interprets my blog posts as teacher blaming or shaming, you are misinterpreting.

Berrik is reading SO well these days.  Particularly in comparison to where he was 6 months ago.  He isn’t caught up to grade level, but he is progressing at a fantastic pace.  I have zero doubt about his ability to read, and I am happy to see his comprehension of what he is reading also keeping pace.  Sound Connections works on phonological awareness, and through this he is learning to spell, to print, to decode words phonologically and for meaning, and eventually he will write sentences and stories through this process.  He is at different levels in different subsections of language and literacy, so we just keep moving along in all areas working harder on some than others.  For example, he is reading at a higher level than he’s at with more advanced sound blends like ‘th ‘(loud, like in ‘they’, and whispered, like in ‘think’) or ‘sh’.  The cool thing is that as we add the sound blends, he is already able to read many of the words that use those sounds, so he is able to quickly relate the sounds to words he knows, and then from there decode other words that he doesn’t know.  Because of how well he’s reading, his sight word acquisition is rather dramatically quick…  for whatever reason, if he learns a new word in a book, he is easily able to remember it for future, so we just add it to his sight words pile.  The pile is unwieldy now, but because of the reading, he no longer needs to review the earlier words as he reads them so frequently that they are solidly in his brain storage and easily accessed.  He will still from time to time read a word from back to front – meaning he starts decoding using the last sound as the first sound in the word, or confusing ‘b’ and ‘d’, or reading ‘on’ as ‘no’ or vice versa… These are typical dyslexic things, further impacted by focus or attention issues, but he manages quite well overall.  He is getting good at self correcting when he does this, which tells me he understands that the word he is saying either isn’t a word, or just makes no sense within the context of the sentence or story.  This is huge in the world of language and literacy, learning disabilities, and speech.

Hopefully this has been helpful to those wondering exactly what the heck is going on with Berrik, and how we are working through it all.  I am learning as much as Berrik is, if not more, and as an aside, thanks to his social studies curriculum, I am getting pretty informed on some Canadian culture.  Ask me about the Inuit, or the Acadians…. or about weather patterns in Iqaluit vs. Saskatoon.  And can I just brag that Berrik saw the word Iqaluit and told me it was spelled wrong , “Because every time you write a ‘q’ you always have to write a ‘u’.”  Welcome to the multitude of exceptions in the english language my boy.  Welcome.

Labels are for Mabel

Labels are often deemed necessary.  Some would say they are needed in order to help promote shared understanding. I believe this is true to some degree, at least in theory.  The problem with labels, is that we often forget that the person behind the label is more than their label.  A lot more.  I think it’s human nature to label people.  We label people in both positive and negative ways….  You call a young boy a math whiz and suddenly we forget that he has numerous other strengths and talents.  How many times as a nurse have I heard someone say, “Can you go check on the head injury in room 2?” or some version of that where the person ceases to be a person and becomes their diagnosis.  “She’s the pretty one…”  Ugh.  We ALL do it.  Repeatedly.  Often with very good intentions.  (And less often, with nasty intention – think Trump for an unlimited list of examples).

Besides the obvious issue with pigeon-holing people by one aspect of their humanness, it also  can create less understanding than more.  Take any label you can think of and think about how that ‘label’ manifests in one person you know.  And then think of another person you know that might qualify for the same label.  How similar are those two humans as a whole?  NOT SIMILAR AT ALL, is my guess.  Take a complex label like cancer.  What that label means and how it manifests is completely unique to each person who has been diagnosed with cancer.   It sounds ridiculous when I type this, but what if we treated all people with cancer in exactly the same way?   Makes no sense.  While there may be similarities to how we treat individuals with cancer – we use chemotherapeutic medications often (although in unique doses and combinations and schedules), radiation, stem cell transplants, surgery – there is never one course of treatment and patient response that looks exactly like another course of treatment and response because each person having treatment is completely unique.  Again, this all seems so obvious.

Learning disabilities and learning styles are incredibly complex and completely unique.  Look up the definition of dyslexia and you will see a long list of possible ‘symptoms’, and if you read further you will see that what dyslexia looks like in one person may be very different from another person with the same label. Ditto for ADHD.  Or processing disorders.  Or autism. Speech delay. PDD.   <Ya ya, Chandra, we get it.  Labels are high level and don’t reflect the individual.  Move on.>

My point is that in my opinion, when it comes to learning, the labels are not relevant.  You may need them to help get support, and that is where the value is.  But when you start to look at what specific support your child will need, forget about the labels and look at the child. Where is the child at today? Which way does he or she learn best?  Does that change depending on the topic, time of day, or activity?  What strategies work best for your child. How does diet, or activity , or sleep, or routine impact his or her learning? How can your child achieve meaningful success?  Having a label doesn’t answer those questions, and sometimes results in not asking the question at all….  Have you ever heard, “Oh he has ADHD, he’ll never sit through this.” ?  I have.  It’s not about whether or not he will sit through an activity.  The question should be “How do we adapt this activity, our approach, his environment, etc. etc., so he can be successful?”

I have been thinking a lot about learning disabilities and learning styles lately for obvious reasons.  When I think about homeschooling Berrik, this is my philosophy:

I don’t worry about labels because they aren’t really relevant to what I am going to do. It’s not up to me or a label to pre-determine what Berrik can or cannot achieve.  On any given day, I just start where he is at and progress with him at his pace.  If he is not progressing on any topic or in any moment, I believe it is my responsibility to figure out how my child learns and adapt my approach.  Kids all progress at different rates.  They all learn in different ways.  And that can change from day to day, sometimes from minute to minute.  I’m here to help Berrik navigate his learning journey, not dictate it.  

And this is what I tell myself every day.  Navigate, don’t dictate.  I’m a dictator by nature.  Some  (or maybe many!!!) might label me ‘bossy’.  I have absolutely been called a ‘know it all’.  I’m terrible at meditation and yoga, but I have a mantra…  Navigate, don’t dictate.  Navigate, don’t dictate.  One more time.  NAVIGATE, don’t dictate.

As an aside, I’d like to get better at yoga and meditation. To meditate I’d have to stop talking, and I think many of you know that may be a bit of a stretch goal, so perhaps I’ll start with yoga…  (See what I did there?  Stretch goal…yoga…) <mic drop>