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One thing I wish people knew is how affected individuals internalize the problems associated with ADHD, and struggle behind closed doors.

For a very long time, I felt an immense amount of guilt about my inability to perform in a way I knew I should be able to. My grades were bad not because I didn't understand, but because I couldn't make myself do the homework or pay attention in class. I would spend hours doing menial, unproductive tasks or browsing social media to keep my mind busy because I felt like I always needed to be occupied or active. I would take caffeine pills to stay awake at night because I felt guilty about wasting time sleeping, but find myself unable to actually utilize the extra time.

I didn't know until 6 months ago that my problems were because of ADHD, I just thought that I was lazy. That I was rude for talking over people or forgetting basic requests. I couldn't just sit and watch a movie or listen to an album or read a book like other people could, and I felt like I couldn't relate to anyone. Getting a diagnosis changed my life. More than being medicated, being understood made me feel less alone.

I want neurotypical people to know that ADHD isn't just the outward effects you personally witness or find frustrating. It is something that a lot of us internalize while trying to find answers for behaviours that feel out of our control.

By: Mick, from BC

If you took all of the things that were special about me,
you could put them all together and call it AD/HD
No better, no worse, just different that’s me.
I’m really now crazy, please try and see

Like a talented wizard in a world full of “Muggles”.

it’s no wonder all you see is frustration and struggles.
As I daydream and drift, you think no one’s there,
but nothing could be further from the truth, believe me, I swear.
I see your impatience as my mind starts to wander
But, you don’t know the depth of the thoughts that I ponder.
For creative thinkers, get lost in deep thought ,

which lead to the illusion that they cannot be taught.

I know trying to reach me can give you the blues,
but I wish for just once, you could walk in my shoes.
To see things through my eyes, you would be amazed,

at the speed and the sheer volume my thoughts seem to blaze.

I’m not lazy or stupid, if only you knew,
how truly difficult is it to limit myself and think like you do,
But, I can see things that you’ll never see,
it’s like a second nature, because I am me.
with lightening fast reflexes, I can switch gears,
to be firm and inflexible is the worst of my fears.
I’m calm in a crisis, and know just what to do,

For I’m in great company, Mozart, Edison, Churchill just to name a few.

So show me some patience, as I’m patient with you.
Just a little tolerance, it’s long overdue.
Please try and understand me, along with my AD/HD,

It’s a very big part of wonderfulness of me.

By: Robert, 58 years old

Written by Heidi Bernhardt R.N.

During this year’s ADHD Awareness Month’s Campaign CADDAC shared ADHD facts from peer reviewed research. Our media release and bus shelter posters stated that ADHD is a serious mental health disorder that can significantly impact one’s mental health as well as physical health. Consequently, a few followers shared that they found the messages too negative. They would have preferred more positive messaging, fun facts about ADHD and more comments on individuality and neurodiversity. As a mother, grandmother and spouse of someone with ADHD I can certainly understand these feelings. We want others to recognize the individuality, strengths and other wonderful traits of our kids and family members with ADHD and not just the down side.

One of our Facebook contributors suggested that it would be beneficial for CADDAC to let people know why we think people should know these facts and what CADDAC’s next steps are after this campaign and bus shelter advertisement. I though these were very insightful questions that should have been addressed earlier, so here goes. 

Unfortunately, medical research data by its very nature always removes individuality. It looks for commonality, raw data and percentages that can be used to draw conclusions. I remember when I first found out that ADHD was a part of our family, about thirty years ago, I read medical texts written for clinicians because little else was available. Even with a background in psychiatric nursing I found these extremely depressing. Most of the research data made it sound like my child was heading for a life of failure, unfortunately that has not changed much. After working closely with ADHD experts through CADDRA while building CADDAC I quickly realized that ADHD information, even if basically the same, should most often be nuanced according to the audience.

But here’s the rub. If we don’t share the negative facts about ADHD openly and bluntly, ADHD will never be recognized as something that requires society’s attention. We still lack resources for assessment and treatment nation wide. Access to multimodal treatments, even when strongly backed by research, are costly and difficult to access. Many students with ADHD across Canada are still unable to access the supports they deserve in order to reach their potential. Employers still do not understand that ADHD is actually a medical disability and similar to depression should allow the right to accommodations.

We at CADDAC also find it hugely concerning that: large mental health organizations still offer very little information about ADHD; many mental health centres still do not treat ADHD; many medical professionals still know little about ADHD and those that do often charge over provincial coverage to diagnose it; and large mental health awareness campaigns still do not include ADHD in their messaging. 

Almost on a daily basis CADDAC is reminded that our decision makers and elected officials do not understand the serious consequences of ignoring ADHD. They really don’t think about ADHD at all because they believe that ADHD is of no interest to their constituents. You see, their constituents do not speak to them about ADHD unlike parents of children with Autism. 

So, this year CADDAC chose to put out some hard facts about ADHD. Through our ADHD Speaks campaign this October, ADHD Awareness Month, we are asking that people share those hard facts with their elected officials or others that needed to be educated on ADHD.  

We ask you, our followers, to stay tuned as we further expand our online advocacy campaigns this fall and into 2021. We plan to highlight specific advocacy asks in each campaign and will be requesting those personally or professionally impacted by ADHD to help us inform our elected officials that their constituents actually do care about ADHD.

Warm Regards,

Heidi Bernhardt

I'm a University Professor and I'm interested in helping with ADHD advocacy.

I was diagnosed in 2014 when I was 49 - about the same time I was hospitalized and had surgery for heart disease.

Though quite fit at the time (I have a strong "H" component in ADHD and so I enjoy exercise), my lifetime of extreme anxiety over time management, my social missteps, my risk taking and my hyper focus have ravaged my personal relationships and my body.

My ADHD "hyper focus" seems to have enabled my success in the academic world however, but my brothers didn't get hyper focus and so they suffer more than me.

Mindfulness, exercise, alcohol reduction and medication respectively seem to help me most.

I'm not sure if a sufferer makes a good advocate, but my story might at least be interesting: ADHD has lead me through an early career as a punk-rock drummer, then a Professional Geophysicist, then a graduate student / punk-rock drummer, then a Lead Research Scientist, and now an Associate Professor / punk-rock drummer.

Because of the "H", I have endured more concussions and more broken bones that any of my academic peers due to BMX crashes, skateboarding falls, fights and motorcycle racing mishaps.

Rob Ferguson, PhD, P. Geoph
Principal Investigator, City Fibre as a Sensor (CFaaS)

My 11-year-old son, Zane, was diagnosed with ADHD in gr. 2. After having a very difficult year, he was assessed through the school.

Grade 3 was like night and day. He still struggled with his emotions but he was given a very dynamic teacher and a very dynamic classroom. I cannot say enough about this teacher she is truly great at what she does.

The following year in grade 4 he was given a teacher who had a more structured class but she was fully prepared for him and created an area in her class that he could use fidget toys and get up and move around when he needed to. She created an amazing bond between her and my son.

During both gr. 3 and gr. 4 Zane was given tools to use at school. He was given a rocking chair, thera bands, a standing desk, a trampoline etc. I didn’t have to ask for anything for him because everyone seemed to bend over backwards to get what they thought he needed. I had constant communication from the school, resource teachers etc.

There were still struggles but I knew he had the tools he needed.

I always felt though that a number of teachers who worked with Zane did not understand what ADHD really is and that communication between teachers was lacking. There wasn’t a consistency between his main teacher and a teacher he would see once a day for example. It was difficult for him to understand why what was allowed from one teacher was not allowed from another.

Grade 5 has been a disaster since September. He was not given many of the tools he had last year. I've had to fight for almost everything for him this year. I've had tell his teacher she shouldn't be laughing while I describing my son’s challenges in the classroom. I have had to listen to her tell me that we needed to push him academically because he was able to do the work and we didn’t want him to be a drop out. I have had to let her know that he needs fidget items to better function in the classroom and they cannot be held as a reward for getting his work done. I also had to listen to the vice principal tell me that his behaviour would not be tolerated this year because while some of it had to do with ADHD a lot of it was learned behaviour. I asked his teacher for help many times to figure out what was triggering him this year given that he finished grade 4 very well and had an amazing summer. All of this resulted in us putting Zane into a new classroom so he could change teachers.

We feel as though the school believes he should have outgrown his ADHD and he is simply a "bad kid."

We tried medication in gr. 4 and the beginning of gr. 5 but it made him very angry so we took a break because I didn't trust that his school would be supportive. Recently we started trying a new medication and we're hoping that it is the right fit.

The move to a new classroom has been better for him. His new teacher is kind, but is not set up in any way to support his needs. I find they do not use his IEP recommendations and do not communicate with us or seem to be very positive about him or his success. EVERY time I bring a concern to the teacher or principal about something that happened in Zane’s day I am told it didn’t happen the way he described. They tell me the goal for this year is to have Zane advocate for himself and every time he does or he asks questions he is either told no or not to be rude.

Earlier in the year I reached out to the superintendent of education for our school and he was great. Things seemed to have changed for a bit but, I feel as though they just tell me what I want to hear and then don’t make any changes.

To say this is a frustrating year doesn’t even begin to describe it but we will keep advocating for him and for ADHD awareness every day.

Thanks for listening

- Joanne

I listened to a piece on adult ADHD on CBC radio and my internal voice grew growing louder and louder ... Yes! Yes! Yes! Finally good content on ADHD!!!! This inspired me to share my story.

Since my son was diagnosed with ADHD and Dysphasia 10 years ago, I have refused to believe that his life would be limited by his condition. I have been immersed in a quest to empower my child to achieve his goals and dreams. Since then I have been following experts, reading everything that landed on my hands as well as participating in seminars covering the subject of ADHD and learning challenges.

With time I came to realize that I am fascinated by the adolescence and young adult years, a crucial time in our lives when we are transitioning from childhood to adulthood.   The coincidence of having a child with a neurobiological condition gave me the opportunity among other things to question my values and beliefs.  Education and diversity became top priorities in my list and without realizing I entered in the fascinating world of coaching and the power of our mind.

I am currently taking Professional and Personal Coach Certificate program at Concordia University as the first step of my journey to become ADHD/Executive Function Coach. I want to promote the benefits of ADHD coaching as a valuable process in the life of people with ADHD and learning challenges.  I want to partner up with researchers, professionals and educational institutions that believe in diversity, innovation and that all individuals have potential to fulfill their dreams. So together we can bring meaningful changes in the educational system and society as a whole.

I am very passionate about ADHD.

Submitted by Liliana Turecki

I am 30 years old, and currently reside in Timmins, Ontario. I have been diagnosed with ADD/ADHD-combined type (severe).

I had the testing completed when I was 17 years old, and I know the struggle of these illnesses and the impact it has all around your life, in every single possible area, and also the impact on those around us.

I am interested, to say the least, in advocating for anyone else who walks in my foot steps.

I’m extremely loving, compassionate and empathetic, and am a very very very strong public speaker and am passionate about topics such as these.

I have spent years and years researching my “disabilities” and know a great deal about them, and am confident that I could make a movement. My mother is a special needs advisor/learning strategist/assistive devices technician at the a college in northern Ontario.  She is the person who deals every single day, year after year, with students such as myself with all kinds of disabilities, granting me even more education.

My mother tells me everyday that she KNOWS I will be a speaker on causes dear to me such as this, and that I am absolutely perfect for it. I look as if I am 20, I fit in with younger as well as older people, and I tend to make a personal connection with each person I meet, even an entire group.

I know how to reach out and grab the attention of people that I believe need to really understand the severity or impact (whichever the topic calls for) and bring them in, and almost have them go through the experience with me, as I recall the memories in great detail, using comparisons to other common things, just to give an idea of what we are talking about. I hope I’m making sense to whomever is reading this.

Basically, I use every opportunity I get to speak up and speak out for others with any illness I have.

We all know that ADD/ADHD is linked to so many other illnesses, and I’m pretty sure I’ve got them all (haha).

But I’m proud to say, that I’ve taken every one of these, head on, and they are now a battle that I’m winning.

I have taught myself over many years how to work with and work around my Disabilities, learned to embrace them, and how to actually use them to my advantage. You cannot spell “disability “ without “ability”.

I was lucky in high school as I was not bullied, I was actually very popular, and was voted class clown in the year book, so there’s an idea of what type of person I am. I have been told a million times I should be a comedian, and I have been told a million times I am a born entertainer, so it’s never been out of my character to throw in some comedic relief to break up the sometimes sadness when I do speak.

I have personally had to struggle through a time when there was very little information available or easily accessible about ADD/ADHD. It goes without saying that I had absolutely no accommodations in school, and was basically thrown out to the wolves.

What I mean, is, I was just as smart, just as capable as every other student, but it was almost impossible to even argue that when the report cards came in. I learned a completely different way then other students, and when my needs were met and I was actually taught in a way that I could understand, it showed.

But that came so infrequently, and my confidence completely crashed, and I actually began to purposely not try, in attempts to make it look like I didn’t want to, and that way I felt safe from failure. If I didn’t really try, then it’s not me that is stupid because I failed, right?

I developed a drug addiction at a very young age, which is one of the “related illnesses “ that I was referring to in the beginning. I struggled so badly with drugs that I nearly lost my life. I progressed from pill popping to injecting. After many years of IV drug abuse, I developed an infection in my blood causing a sort of growth on my heart valve that was “spitting” (so to speak) poison into my blood. It spread into my lungs and filled them up to the point where a deep exhale would produce a Kleenex full of blood. Against my will, and only on the orders of my probation officer, did I seek medical attention. I walked into the hospital calmly and as I began to try and say what was wrong, I literally blinked and was in the trauma room, I didn’t even sit down after walking into the hospital, literally.

I was flown out by emergency helicopter and was in a coma within the hour.

I shouldn’t be alive. But I am. And I believe it is for a reason. I was given this gift, a second chance, and I plan on using all of my lessons, for the greater good of all, to help prevent another human being from going through the pain, suffering and trauma that I have endured, because if you think about it- it’s absolutely preventable.

We need to speak about it, because if people can get out and tell their struggles, and even better: speak with confidence, and in a position that can speak for itself that any “disability” cannot limit you, then others will not be afraid to say if they think they need help, because they will relate to us, and understand when they may need some help and understand what it may be so that it isn’t so scary.

As humans, we are always much more comfortable accepting things if we aren’t the first one or the only one. It’s the fear of being alone or being singled out. We are social creatures and the fear of being alone is too much for most to bear. And in this day, the fear of being bullied is enough to have your own subconscious trick us out of even thinking there was anything to need help or ask for help about.

People need to hear about what is available to help navigate through life with this condition, and most importantly, know that it can be done and all is not lost.

Just because they have this condition does not mean they cannot pursue whatever they desire! It just needs to be delivered differently.

If we knew the signs to look for in our children, then a lifetime of heartache and low self esteem can be avoided.

My mother would also be interested to speak on behalf of a parent, to explain from that point of view, just how badly we need to know more about this disability, and all others, and to accommodate those who suffer from it.

Not only do I want to help and encourage others who also have this condition, but I so badly want to educate those who do not. From the outside, you would never know I have ever struggled from anything, or still do, and that’s all that matters. What you see and hear in a person, you should love them for who they are, not for the “labels” we are unfortunately given. Because like I said, you cannot spell disability without ability. And those who bullly others because of a different way of learning, is actually showing their own insecurity. That’s the truth. They are pointing out someone else’s flaws (in their mind) to create a distraction from their own.

Because for every one thing I struggle with, I excel in 5 others. and that’s the beautiful thing about humans! WE ARE ALL DIFFERENT!

Can you imagine if we were all the exact same ? Boring Well we’ve known that every human is 100% unique since the beginning of time, so why are we treated as though we are all the exact same and learn the exact same ? That’s ludicrous, and in my mind, setting a great deal of our population up for failure. The government wouldn’t be in crisis mode for drug control if those struggling with drugs, and therefor their self esteem and self worth, were actually given a chance to begin with. Those struggling with drugs, were struggling long before they met their drug of choice. We don’t wake up and decide that we are so happy with our lives that we are going to be even happier and get high. No.

Everyone should EQUALLY have a chance at whatever they want to do, and be treated like others and not be made out to look and feel stupid. If I could get my voice to more people, I would let them know that it IS possible to have a normal life, and that they aren’t alone.

Most people either can not afford the resources to help with the extra help for controlling, and coping with the condition, or they simply just do not understand it or the symptoms and effects of it, and pass it off as a behavioural issue. So many kids do not understand why their actions lead them into punishment, because they don’t understand or have any control over why they do certain things in the first place. So obviously it’s the beginning of problems in childhood, because a fear is instilled into us that whatever we do is wrong and so they give up.

I just want to take everything I’ve learned and help, teach and speak for those who cannot. That way, all my heartache and struggles were not all for nothing. Everything I did was not all in vain. If I can help change even just one life, I will be complete.

Thank you for reading!

I love each and everyone of you for what you do, and it really really warms my heart that someone cares and is willing to fight for equality. Thank you.

We asked: Were you able to access an assessment for ADHD easily? What was the wait time and cost?

For my daughter it would have taken 1-2 years to get an assessment done through the public system in BC. We ended up borrowing money from family to get it done privately and it cost us about $2000.00. Even then the process took 3 months from start to finish.

We knew there was an issue since Kindergarten and that ADHD was a likely cause but couldn’t even get the private assessment done until she was in grade 2. She’s in Grade 4 now and we still haven’t found a pediatrician who is able to work with her because of underlying family health issues that makes her a complex case.

I hope through advocacy and education this will change soon.

Elana

My ADHD started before I was born. I came into this world with (I assume) the ADHD genetics plus a parent who was already reeling from the condition, and became the primary caregiver. So before I can reliably recall there were minor issues of rambunctiousness and then there was school. No wonder I hated it; things came at me at an alarming rate. Part of the problem, I think, was an inability to separate the flood of extraneous matter that the other kids did?  I felt stupid from the get-go and my poor father who was feeling alienated by this time taught me antisocial... myths/truths?

By the time I was in Junior high I'd had it with school and was very weary of society. Now at 67 I've become more or less aware of my condition for the last 25 years, realizing more and more every day how difficult a journey it has been.

In spite of my problems, I managed to survive many day-to-day challenges and even excel at many, while hanging on to my creativity. A highlight of my journey includes inventing/patenting a successful, marketable product and obtain a pilots license --in spite of being acrophobic.

I now live alone, tolerating absolute clutter, enjoying my k9 companions and my positive, ever faithful ADHD attribute; creativity

Glen
Elgin, NB

I want I want I want
Be patient
Think think think
Talk talk talk
Can’t verbally organize-thoughts in real time
Can’t hold verbal organized-thoughts in real time
Why bother why bother why bother
Don’t give up don’t give up don’t give up
It’s probably too late late late.
It’s going to be too late late late.
I want want want
Be patient
Maybe I just think I want what I want
How can you not know what you want before you want it. How can you know what you want before you do it?
Others walk away
I walk away from myself
An internal picture of existing, evolving and dreamed of paintings (collections of thoughts) slowly fades as so do I.
Repeat
60 years of ADHD overwhelm

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