Wednesday, September 16, 2009


Nope, this ain't a post about the Bible. Or about my awful poop experiences. (Yes, I still have to make a complaint about the hospital---debating how to proceed.)

In the meantime, I've been trying to get my kids settled into school. Buying clothes and books and supplies and figuring out what each kid needs for forms and medication refills and labelling each and every scrap of everything and God knows what else. It's a hell of a production line, and really not my skill set. If I hadn't been doing this for years--I'd be utterly confused. As it is, this year, with my nanny it was markedly easier because after I bought the labels, she could iron them on, and if I got bogged down or discouraged by it all, she just kept going and asked me what else needed to happen.

And having someone who can do the boring parts, or just encourage me when I encounter a bump in the road? Makes a big difference.

It's the reason I hire my professional organizer to come in at least once a year, to sort out the piles of paper into nice neat files and help me throw away the junk and sort the toys into bins and figure out what has to go to storage and what has to stay here to be used next. I try to do it on my own--but I get lost. It's the ADHD or ADD or whatever the new name is. The medication fixes a lot, but not everything. Btw, yes, I think I may have convinced my doc to keep renewing my meds, but I still don't have a definitive answer. I have an interim prescription and she now has the reports from the shrink and the cardiologist so I'm hoping. In the meantime, we cross our fingers and pray.

And that's what the revelation part of this post is about. It's about all the people in the world who are in denial about the severity of ADHD. It's about all the doubters and the whiners and the skeptics who don't want to believe the science. They remain convinced that it can be caused by the moral failings of mothers, like the chemicals we evil moms use or the cars we drive or the food we serve or the negative thoughts we secretly harbour that make our kids sick. You know, like autism and cancer and paralysis and blindness and deafness and diabetes and freckles and every other damn disease cause by shitty mothering.

After all, it always the mother's fault, right? Right?

When I first entered the blogosphere I never mentioned that I had ADD. A friend of mine, an employment lawyer, had made it clear that in the real world, I would be instantly fired by anyone who found out, and that I would never be hired again, and so I knew how dangerous it was to self-disclose. In the Liberal Party, like all political parties, I'd be a pariah. (Half the party has ADD, and pretends they aren't self-medicating with double espressos at Starbucks. What? you thought those nasty exchanges in the House of Commons happened by mere chance? HA) And the many vicious nasty comments made to me, by Doctors, friends and relatives who found out? Oy...I stopped telling anyone. But blogging means sometimes commenting at odd hours. Long after my meds had worn off. And sometimes my comments were I knew I had to give y'all a heads up.

And I mostly didn't blog about it. I don't even have a label of my sidebar. Can you say---SHAME? It wasn't a big deal though until I had to go off of it, or change meds or talk about the kids assessments and their medications. But it still bugged me to see ridiculous posts or news stories that were based on zero research and bad science. And all of it based on the idea that people would do anything, anything to avoid having that label on their kids and that medication given to them.

Then shortly before BlogHer '09, I found a referral on my statcounter for one particular mean-type website, and someone in the comments said I was a crazy drug user and had my kids drugged up. And then another person emailed me directly and called me a baby killer. And I froze and turned into a tiny little shrivelled up gutless wonder.

The only reason I even went to BlogHer was because Cecily said she would talk to me and we could hang out together. I worked on the assumption that not one other soul would even look at me, and in fact, that all of the attendees would call me a drug addict and a baby killer to my face out loud. And then laugh. I actually rehearsed in the mirror ahead of time what I would do when someone did say that to me. So I wouldn't cry or faint or vomit.

But no one said that! Everyone was really really nice. Not one person was even snarky.

The best part? When a couple of people came up to me and asked me about ADD and wanted to talk about their own diagnosis and their kids, and what I thought, and if they should get assessed, so they could get help. And all the evil troll words started to melt away, and the weight lifted and I realized that there is a point to me talking about my issues if it helps others.

You see, the Establishment in our society doesn't want anyone correctly diagnosed or treated for any mental illness. After all, if the current underclass was able to live up to their potential, what would happen? If all the brainpower and motivation in the world was harnessed and being used productively, I think our economy would soar. But then---the current members of the old boys club might not be on top. They and their progeny, just might have to work for a living. So it's better to blame Moms and tell everyone to pull themselves up by their bootstraps and work on their stiff upper lips. The media does a great job of spreading this meme.

So about yesterday. My husband's cousin stops by in the morning. She and I have been discussing our kids and their educations for years and her oldest son is gifted (an absolutely brilliant writer) and has some Asperger's/Autism features, but not quite all of them. He has huge trouble with math and can't plan his assignments and is very sensitive to stimuli. But not enough to precisely fit any criteria. It's kind of the maddening part of the assessment process. Often the psychometrist can't quite pin down a label, and god knows the Ministry of Education wets itself with it's desire for a label and demands it for each and every kid. Doctors can tell results accurately in terms of IQ score and fine motor control and attention ratings--but whether it's a central auditory processing disorder or a non-verbal learning disability or asperger's or autism or ADHD inattentive, hell, that's always a close decision. And her son has had all of those labels except ADD, until his latest assessment.

For 15 years, she has had every kind of LD help imaginable for him, from accomodations to special tutoring and public schools and private schools. Personal assistants and special day planners and organic food and all natural everything. They have literally turned their entire lives upside down trying to help their son, and his oh so similar younger siblings to succeed in school. And not one thing has ever worked. J, their oldest, is now utterly depressed and convinced that he will never make it to university or even hold down a job because he can't figure out what is going on in the world around him.

They have done everything right according to the ADD skeptics. They don't have cable TV, they barely have a TV at all. They only have a basic computer for work. They spend all of their time out in nature. She has taught him so much she practically has homeschooled him while he attended public school. He reads lots of books and there are no chemicals in their home. They don't even have any off-gassing furniture. All their food is made from local organic sources and never pre-prepared.

And none of it has ever done shit. Nothing. Not one bit of good.

And it never will.

Genetics is kind of unbeatable that way. You need actual medical care to treat a medical condition. Guilt and denial and judgement don't help, at all. I might have wanted to wish away my genetic clotting disorder, but the only way I could ever beat it and get a live baby was to take heparin. And I can wish until I am blue in the face, but my brain is my brain, and yes, maybe a little therapy can work on some aspects, but in the end, I have to accept my body and find a way to deal with it.

And so I opened up to her about my ADD and my medication and the boys and how it has transformed their lives and mine. I told her that I was extremely worried that Mac was becoming depressed last year and his self-esteem was very very low, and he was moody and sad. Then after he started medication and began to get A's and make more friends, it was much much better. He is so much happier it's hard to describe. I told her that before meds, Kaz was so distracted I was concerned that he would someday forgetfully walk into traffic and get hurt, and now, he can pay attention in class and understand everything. He still has some learning issues, but they mostly are writing and fine motor related.

And as I recounted the damages and injuries my kids and I had racked up over the years while unmedicated---the car accidents, the near drownings, the broken bones, and the lacerations, her eyes widened in horror and talk turned to her husband.

Her now retired, news reporter husband-- a wonderful writer who loves to sit and muse and make conversation, if only he could ever find his way to his destination. The artistically minded guy who dreams and writes books and literally does, wander into traffic. Really. When he isn't falling off of their roof or cutting his hands on the bandsaw or forgetting to file their taxes.

Never mind her connection to my husband's family and all of their interesting mental issues. The same issues that have allowed them to be come brilliant experts in their field and crusading entrepeneurs and owners of companies also mean that their edges are a little frayed somedays.

And all of those genetics have come crashing down and combined into our kids now. But because the Doctor who is seeing J. knows nothing about ADD, and is so focused on his sadness at failing, he thinks they should avoid ADD medications. So he continues to fail, and gets sadder about that failure every single day. The doc he is seeing thinks drugs could cause some sort of severe side effect. To him they are a "last resort." Meanwhile the kid drinks loads of coffee every day and is sinking into some sort of clinical depression.

So we gently discussed getting another opinion and talking to an ADD specialist or to our pediatrician and how the tablets only last 4 hours and the long acting 15 hours, and it's no big deal because the half-life is so quick as they leave your body. If it doesn't work, no need to take it. If there was a side effect, it would be gone rather quickly. She asked if I could talk to her oldest, convince him to try it, maybe tell him my story. Perhaps have our kids talk to each other. I told her I would be happy to.

As we talked, her face changed and I could see that she was beginning to think about all the ways in which her life might have been different if someone, somewhere hadn't been so opposed to diagnosis and medication for her husband, and her kids and maybe even herself. What if he had been diagnosed at an early age? What would his career have looked like? Would have have been so frustrated? Would he have needed antidepressants? What about her kids? Could she have had a career after they were born? Instead of spending her days and nights trying fruitlessly to solve his issues and get him therapy and school help...Would he have some friends? Would he be happier? Would they all be happier?

My heart is breaking for her. She is sitting at her house right now grieving the life her family might have had....if prejudice hadn't gotten in the way.

I wonder how many more families like this are out there, needing help, help they will never ever get.


  1. a childhood friend of mine has a son the same age as my daughter and last year after many years of trying to figure out what the diagnosis was he was finally diagnosed with aspergers.i didnt know much about these issues but i know her to be a wonderful mother.they were devestated with the news yet relieved they now had a treatment plan for their son.her major complaint was that her salary would have to cover all of his treatment and schooling costs.There are many families in the same predicament, left to deal with the issues on their own. Kudos to you for having the courage to share your experiences. I know for my family there is very little help from the medical establihsment except to brand me an inferior mother.Keep speaking out.And to the people or persons who attacked you well they are just mean and ignorant people who probably got more skeletons than any of us,who live our lives bravely and openly. Big Hugs!

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  3. A really smart kid came to my office the other day and told me one of the reasons he was so excited to come to college was because he was able to walk into the office for students with learning problems and say, "I think I have a problem," and they got him testing and he now has a counselor to help him. For years he'd been suffering in school, unable to concentrate, and his teachers felt he needed help but his parents just told him that was ridiculous and he just needed to try harder and stop daydreaming. Killed me. Who does that to their son?

    Erykah's probably right about the skeletons.

  4. I have to admit that I used to play the blame game...before I realized it just isn't so simple. But the honest to goodness truth is that I had to get a dose of reality before I saw it. I'm so sorry you've had to deal with all of that crap.

  5. Thanks for being so open - for those of us who don't frequently encounter this within our circles of family and friends, people like you help educate and dispel the fear of the unknown. There should be no shame in being who you are, especially when you work so hard to make the most of it.

  6. I'm Lala and I have ADD. I also have and Autistic son who was diagnosed at 4 with ADD. Am I in the wrong room? heh. I'm with YOU always and forever.

  7. We took a long time accepting that my son's problem might be ADHD. I didn't want him to face prejudice and preconceptions about what ADHD was. I didn't like outsiders thinking we weren't able to parent him so he was out of control.

    He's now been on Rx since last February and we can't imagine now how shitty things really could have gotten without taking that step. He is SO much better now. His self esteem is low, but we are working on that. We realize now it's not poor parenting or environmental. 35 years ago my husband was "difficult", "willful". Guess what? He was probably ADD or ADHD.

  8. So much is gained by telling our stories. Thank you for sharing yours.

  9. From me too, thank you for sharing. I think I once mentioned my little brother suffering the same, unfortunately my mother wanted to handle it all by herself, again unfortunately, that's all I can say!


  10. How one's life goes--sometimes it just seems so random, how paths split off. If you had just had a different circle of friends who were more or less accepting of something. If your parents had just noticed, or just left you alone. If you had just learned about this sooner, or never heard of that.

  11. My oldest child for sure has ADD and what a difference medication has made for him. He also has GAD (general anxiety disorder). I also suspect he has sensory integration disorder however my belief is always shoved aside by drs. My youngest is yet to be diagnosed but I expect ADHD and some type of communication disorder are in the works. Unfortunately our education system in Canada sees ADHD as medical problem not a learning disability (don't even get me started on that one)

  12. Thank you for sharing this story. It parallels my life in many ways and I can sympathize. My parents said no to medication at an early age, I've only recently been diagnosed as an adult. We went through everything else, food allergies, diet restrictions, gluten, etc. etc.

    Having managed to somehow scrape by for almost 30 years, you can well imagine I've got a pile of other issues thanks to the undiagnosed ADHD. Although I still have trouble talking about it with people for fear of ridicule, it helps to read about others and know that I'm not alone in the world.

    I've been through almost every stimulant medication and am now onto non-stimulant. Nothing seems to work very well and the side-effects are horrible. The atomoxetine has been the the worst, 2 weeks in. So far my concentration actually seems to have worsened. I'm really not enjoying the resting heart rate of ~96bpm and constant dizziness, never mind the occasional goose pimples on random patches of skin and uncomfortable muscle aches.

    Slowly coming to grips with the reality that perhaps all my worrying about fitting in to the world has me looking at things the wrong way. It looks like I have to make the world fit in with me. Somehow.

  13. Better late than never? I was just talking to my SIL about ADD and ADHD today (I have one kid on meds and one who hasn't gotten the dose right yet, so isn't taking it for now) The one who's taking it was *destroying our family* before. Now with the slow-release (our psychiatrist said 12 hours) we have virtually no problems (before this, it was about switching schools & being careful not to end up with a police record - now we're getting reports about listening in class, doing homework & being prepared for tests). If any parent can do that in 6 months, I admire them endlessly. This kid totally needed meds. Anyway, my feeling is that ADD is a variation of normal - so common - and it doesn't ALWAYS require treatment. If it's minimal & doesn't have any significant impact (like one of my kids - no social issues, doing OK in school), the kid can try to overcome it. When it's significant, not treating it is absolutely a crime.

  14. thank you for writing this. i work in special ed (early intervention/early childhood) and prejudice against diagnoses or for diagnoses, against medication or for medication, creates so much trouble for the kids and families we serve. just being open to information would solve so many problems! you are wise and i'm so glad you are a resource for so many people out there!--liz

  15. I found you via a very funny comment you made on Warren Kinsella's blog and was amazed and grateful for what you've written here. I wondered if you'd seen what the folks who created Red Green have put together about ADD? A little validation/education through comedy...

  16. I'm glad that your friend, and you, found what works for you and her son.

    There is a lot of misinformation out there about ADD/ADHD, autism, and other special needs. Many people want to just stick a lable on a kid-nevermind if the label isn't the right one, they just need to be able to fit the child into a box of some kind. I have been a para for 18 yrs, and a foster parent for 10 so I have a good deal of experience w/special needs kids and the school system.

    Dyspraxia is not a well known condition that is often mistaken for autism or ADHD. Kids can have trouble with language, attention, sequencing, math, direction, motor skills, be sensory sensitive, have no sense of time, speech issues, and much more. Combined with being gifted and highly anxious, Jake is one unique kid.

    Dyspraxia is far more well known in the UK than in Canada and the USA.

    What many people don't realize is that many disorders have a lot of overlap and 1 symptom doesn't always equal a particlar disorder. This causes a lot of confusion when we are dealing with the school because people still will call anyone w/ attention difficulty as ADHD, even if they don't have it. IMO, that makes it so much harder for people who HAVE ADHD to be take seriously.

    The thing is, some people are so focused on being right that they don't care what it does to the kid. When Jake was in Grade 2 a teacher suggested he be on Ritalin. Grade 3 they decided to ignore the assessment we had done and demanded he was neither LD or gifted but instead a severe behavior problem. They then CREATED a behavior problem. We fought them for the next year and a half, and in the end had a broken child who wanted to die. It has taken years to get the old Jake back.

    These days we don't do anything special for him. He knows his strengths and weaknesses, and we have taught him how to get around them. It helps that I'm a para and know how to adapt things for him.

    Not many ppl know about dsypraxia and I swear there is probably a lot of kids out there dx'ed something else who have it.