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

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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.

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