Thursday, 6 June 2013

ADHD - it won't rule us

ADHD - it won't rule us
6 June 2013

ADHD is for the most part hereditary.  And no, this is not always the case.  But it certainly is the case quite often.  If you or your kid have ADD or ADHD, then chances are that someone else in your family has it too.

And once we started down our ADHD journey with Cole, all roads led to Grant too.  With every consecutive visit to an Occupational Therapist, a Developmental Assessment, Paediatrician, Child Psychologist, Grant would say, "Hey, that's me!".  Every single thing rang true for him as well.  So many of the defining characteristics, common habits, attention problems, focus difficulties and fluctuating emotions were Grant too.  This does not say that anyone is blaming him for Cole's ADHD.  Hey, if our kids have bad eyesight or poor sporting abilities, it's all me baby.  It is just interesting figuring it all out.  Furthermore, ADD and ADHD, is not diet related at all.  It is an inherent thing.  It just is.  Obviously it stands to reason that a healthy diet can only benefit someone with ADD or ADHD.  The same way it can only benefit those without ADD or ADHD.  But cure it?  No it won't.

A few Saturdays ago, I went to the most incredible talk ever, given by Professor Andre Venter.  A world renowned expert on the topic.  He is the go-to guy for ADHD.  The one doctors across the world consult with.  The leader in his field.  He was phenomenal!  What a guy!  I was super impressed with him, because he was just so down to earth and human.  His talk was fascinating and he gave me such greater insight into my little boy.  He was able to take the topic and add humour into it.  I had been feeling quite emotional before the time and went armed with tissues.  Because it is a sad thing to have or to have to deal with.  Still, I ended up laughing quite a bit.

Quite a big problem with ADHD, is the amount of ignorance out there.  The prejudices people seem to have.  Quite often, these prejudiced people don't have any dealings with ADHD, nor experience with it.  It possibly doesn’t affect someone close to them either.  And so their aversion is rather narrow minded.  But here’s the thing about ADHD and ADD:  It is physiological.  It is biological.  It is neurological.  In essence, to simplify it, there is a missing bit.  This is not an imaginary, concocted invention, by some “medical profession” seeking fame and glory.  It is real.  It is documented.  Very well so in fact.  No matter how hard a blind man tries to see and concentrates on doing just that, they still can’t see.  A paralysed person, cannot actively by force of will, make their legs work.  And if you’re missing a limb, no amount of willing that limb to grow back, will actually make it so.  And so, one of the best things we can do with regards to ADD and ADHD, is to remove the stigma from it.  This is not a new disease, and hence we’re seeing so many so called documented cases of what would in earlier days have been simply labelled “naughty” kids.  No, the testing and identifying of these kids and adults, has been made easier.  And that is the only reason, for the supposed plethora of ADD and ADHD kids. 

The morning of the talk, was a very early start for me.  Not only was the talk quite early, but I had to drop Cole off at a friend's house at 7h30 so that he could get a lift through to a rugby match he was playing.  One I could sadly not watch.  I got up super early.  Had a shower, had breakfast, sorted Cole out and I was getting dressed and sitting on the floor, tying my shoelaces, when Grant walked in and asked me, "What are you doing?".  To which I reckon I replied, "Uh duh! I'm getting dressed".  At which juncture Grant kindly pointed out that while I may be wearing socks and shoes and was tying my shoelaces, I had neglected to put pants on.  Right, so about that adult ADHD problem and the line directly coming from Grant.....  I reckon it’s all me too.

Have any of you ever seen that movie, "50 First Dates"?  One of my faves.  It's got Drew Barrymore and Adam Sandler in it and in the movie, Drew's entire memory bank gets refreshed every 24 hours.  She has long term memory, but her short term memory is shot.  Every single day, she wakes up with no recollection of the previous 24 hours.  And I kind of get the same feeling with Cole.  Every single day, I have to tell him the same stuff again.  But whereas Luke and Amber sometimes forget things, because they're absentminded, Cole simply can't remember.  He will in all likelihood never remember to pack his lunchbox in his bag.  Or brush his teeth.  Or tie his shoelaces.  Or put his safety belt on when we get into the car.  And it's not so much that he can't remember, although I do think that that is a problem too.  It’s that he just gets too distracted to remember.  There’s too much happening around him.  And I sometimes get the same feeling with Cole.  It is as if he has no residual memory.  As if he must be told the same things again and again and again.  Some things he will simply never take on, compute, internalise and simply start doing on his own.  Professor Venter equated it to that funny feeling you get sometimes when you wake up in a strange place and for a few seconds, you feel completely disorientated.  Unsure of where you are.  Or why you are there.  Apparently that it how life feels for Cole a lot of the time.  Apparently, it can also be equated to sitting at a very busy train station, with trains and passengers coming and going all of the time.  Imagine dealing with that whilst trying to concentrate on school work simultaneously?  How awful!

Professor Venter said that if you're one of those parents that says, "I only talk once", you've got a real problem.  It simply won't work.  You will have to repeat everything at least three times and even then you only have a 50% chance of them doing what you're asking them to do.  The first time they won't hear you and they won't listen.  They're too busy doing something else.  The second time, they might hear you and probably still won't listen, because they're too busy doing something else.  And if you're very, very lucky, at a third time, they might hear you and actually listen.  And then decide that they’re not too busy doing something else, to act on what they’ve been told.  The problem being that once they've programmed what you're asking of them and they embark on what they must do, they might still get distracted along the way too.  Can you understand how challenging and frustrating that is?  We've tried short and concise instructions.  Crouching down and making eye contact.  Letting him repeat back what must be done.  And still, the world around him is just too full of distractions.

It is very frustrating at times and being patient is essential.  But I am human.  I have three kids.  Not just one.  Bending down and giving single syllable instructions is not always do-able.  My mom reckons that Cole picked his parents well.  That he is fortunate that I am so patient.  That I am understanding.  That I endeavour to understand more.  That I make allowances for his shortcomings.  That I educate my other children about it.  That we try and put practical measures in to place.  All of us, as a family.  That I regularly touch base with his teachers.  With his Paediatrician.  But I beg to disagree.  Try though I may, my patience does get stretched.  It is hard to continually remember.  Where does having ADD stop and being disobedient and simply not listening start?  That I find the real challenge.  That huge grey area.  Is it reasonable to expect him to remember certain things and not get distracted?  Basic stuff.

I did feel super blessed at the meeting though, as all three of Cole’s Primary School teachers were also there.  Grades one, two and three.  How amazing!  It just shows me that the teachers also truly care.  That they are also seeking deeper understanding of these special kids.  And that one has to work together, as a team.  Interaction between parents, teachers, doctors and the kids on a regular basis is essential.  No, vital.  Furthermore, the meeting did have a sort of surreal, quality to it.  Like a bit of time travelling and a trip down memory lane, all combined in to one.  I was making eye contact, smiling and doing little polite waves, to a whole bunch of professionals who have helped us on our ADHD journey.  Smile and little wave to the first Child Psychologist, who initially identified Cole’s ADHD.  Smile and little wave to the second occupational therapist.  Smile and little wave to…..  In addition, I had heard about this talk through a friend, and expected between about twenty to thirty Moms to be present.  But in reality, the talk was attended by over five hundred people.  I kid you not.  Parents, teachers, dieticians, therapists, psychologists, doctors, etc.

One aspect of the ADHD that I find very hard to cope with and that really pulls on my heartstrings, is the fact that feelings of low self-esteem and self-worth are a part of the walk.  And this just breaks my heart.  These kids perceive failure so often and so harshly.  The irony of course being that they are usually super intelligent too.  Apparently, if you diagnose them before nine years of age, you have the biggest chance of giving them a healthy self-image.  However after nine, it becomes more and more difficult.  Cole has grown up in a home filled with love.  A home where he is praised for simply being him.  Still doubt creeps in.  And feelings of failure too.  And just to illustrate, on Mother’s Day this year, we spent the day with Grant’s folks, his sister and her kids.  It was such a lovely relaxed family day.  And all of the cousins, played soccer and hockey in the garden, just enjoying the great outdoors.  Until Cole came limping inside, having stubbed two of his toes.  I quickly dashed off to get a plaster, and while playing nurse, I asked him what happened.  And this is what he said, “I was kicking the soccer ball, and then the ball moved and I kicked the edge of the bricks at the pool.  It’s such a stupid thing to do and I’m going to fail Grade 3, because I got all my Maths questions wrong on Friday”.  All said in one breath.  Rattled off.  It just broke my heart.  Because we were having a lovely relaxing Sunday.  He’s not supposed to worry about stuff like this.  Never.  At eight years old, he’s supposed to not even think about school on Sundays, never mind worrying about failing.  Though it had obviously been on his mind and bothered him the whole time.  How terribly, terribly sad.  I have subsequently had yet another meeting with his teacher, who is also terribly saddened by this.  He won’t fail.  He simply failed to grasp one single concept.  And once that concept was understood, he got all of his subsequent questions right.  Still, his logic does not tell him this.  I am very aware of this.  And continually try and build him up.  Reward systems work well, and his teacher is helping us with this too. 

Each day, I hope for better understanding.  I attempt to get even more patience.  And build up self-confidence too.  My little boy will know that he is clever.  And bright.  Intelligent too.  Talented.  Worthy of success.  And achievements.  A pleasure.  A treasure.  Someone to cherish. 

This is a hard road and I am fearful of higher grades, when the work load increases, and the potential for perceived failures, stresses and worries increase too.  Still, I am confident that I am raising a happy, fulfilled little boy.  A child that is a joy to have.

ADHD won’t rule us.  We will not give it the power.  It won't define our child.  It is but one part of him.  And the whole is so much bigger than the sum of it's parts.
Early morning work in Cole's school book - Ritalin still strong in his system. Work nice and neat.

Just before home time. Ritalin pretty much out of his system. Hardly seems like the same child's books.




1 comment:

  1. Oh Helene, it is really sad for him, and really hard for you I now. But Cole is very very lucky to grow up in such a loving, caring and understanding environment. Luke always amazes me with his patience and sympathy for Cole, and how he covers and cares for him.

    And Cole is the most loving and thoughtful little boy - a real darling! Looking forward to Warmwaterberg with the kids - I am sure Cole will thrive there in that warm water.