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I’m having a virtual parent-teacher interview and am scribbling random, almost illegible notes on a post-it about ways in which I can support my daughter- who is learning across the board a grade to two below her age -it's completely daunting. Internally, I am going back and berating myself for not forcing letters and numbers on her earlier, and making more diligent routines and schedules. She never cared for sitting down or would heavily protest or shut down when I would impose some of my own “fun learning ideas” into her dramatic play. At times I’d even make up different voices for each letter because that seemed to catch her attention, but it never fully evolved into wanting to learn more. She loved being read to and only ever sat still for books so I just pushed my worry to the side and said, “she’ll learn it all in kindergarten”. Just give her autonomy and freedom and pick your battles, there are enough struggles to choose from here.

Perhaps like me your child was a high needs baby, then a high needs toddler? Never leaving your side, having huge emotional experiences beyond what appeared typical and basically running you ragged with their energetic output that was boundless, no matter how little they slept! And they were oblivious to how little sleep you got. Other mothers would be sitting gabbing joyfully, enjoying each other company on a patio with babies contentedly sleeping in strollers while I made my third lap down the shaded street carrying my baby, because she wouldn’t do a stroller and only napped, albeit briefly, after being walked for hours or rocked almost violently. I loathed them.

Now in grade two things have evolved slightly. I would still call her a relentless force but fortunately, at school, she is seen as happy and most adaptable. She is working really hard to keep up and does quite well at emotional regulation in her day. But learning is a huge, huge challenge for her like it is for about 30-50% of ADHD kids who also have dyslexia, dyscalculia, or other learning differences on top of ADHD. “It’s like numbers are mysterious to Esme”, says her teacher. Even when counting 5 on her fingers, to know what “5” actually means would be like going to the moon on a pogo stick. I end our third teacher conference completely triggered, fighting back tears, feeling like an utter failure in life, and wanting to crumple up into a lint ball and be buried under the couch with some chocolate. My partner has a different experience. She is feeling somewhat optimistic! She reflects on some of the more positive comments while I seem to be dwelling in the areas where she is so far behind and then projecting that into her future life as if nothing could change. Like

how will she ever “succeed" in life? How will she budget time, money, resources? How will she figure out x, y, z?! I am spiraling into the future black hole of worry that gets you deep dark real fast.

Luckily, I have some tools and time for self-reflection and pause for a moment to understand how much I am also entwined in this conversation from the place of my inner child. Though I didn’t have the same learning challenges of dyslexia and dyscalculia on top of ADHD like my daughter, I did have trouble at school with executive functioning issues. Like so many women, my ADHD went undiagnosed, until my daughter was assessed. So therefore in school I was just the extremely verbal girl who could take over the room with her energy and ideas and complained (loudly) when we were learning things that did not interest me or seemed completely irrelevant. And like many girls my presentation became more inattentive over time which translates to ignored in the school system. I was withdrawn in class at times, forgetful, with scattered notes everywhere or staring out the window dreaming up other places I would rather be. I was the girl who was told I was so bright but never lived up to my potential because I didn’t apply myself. Those “helpful” comments always made me fume. Please, if your teenage daughter comes home with comments like this on a report card investigate an ADHD diagnosis!

When dealing with my daughter I asses that my investment in her wellbeing and education comes from a deeper place than her loving, concerned parent- it comes from the internal place of me desperately wanting to re-parent myself and be recognized for some of the challenges I had. I want to go back in time and be seen and understood so that I could slough off some of this residual shame and self-criticism; feelings of doubt and not-enoughness I’ve been carrying. I didn’t want her to wonder in silence, what is going on with me? Why don’t I just “get it” like the others seem to? Much of this journey is about some of our parallel experiences as girls, now as women and mothers with recognition of our own ADHD, parenting little versions of ourselves. The key is I am her parent, aware of who she is and her struggles early on. She has me and her other mother advocating for her, researching and investigating all the ways in which we can support her from a place of knowledge, self-empowerment, and strength. We see her and know the challenges that will come up for her in a school environment. We know that ADHD is something she will be dealing with in many facets of her life for the rest of her life. We can intercept uninformed comments about her potential and her abilities from a united and informed front. This early acknowledgement is a key ingredient I never had that will inevitably shift my daughters' self-concept and experiences navigating systems.

I trust that osmosis it will also transform me and bring healing through the lines of time, with compassion, reweaving my past self through this lens of ADHD awareness. For now, I laugh myself up from my crumpled heap and go outside into nature to allow my wild child the space to run free, I invite my daughter along as well.

Note from Heidi Bernhardt, CADDAC President

I am sharing this incident with you because the CADDAC board and I personally continue to be concerned about how information on ADHD is sometimes presented in the media. Unfortunately, poor, even if well-meaning, studies and their questionable findings are being reported, using by-lines meant to be eye catching and memorable. I understand that a reporter may feel that they are only regurgitating what a researcher puts out there, but when they report on an ADHD study that they are not qualified to evaluate and do not reach out to those who are, misinformation on ADHD just keeps increasing. And using headlines and personal stories to sensationalize and misinform just makes it worse. This harms families who are already stigmatized by all the misunderstanding and myths that continue to abound about ADHD. CADDAC and CADDRA are sometimes contacted by journalists seeking out ADHD experts to evaluate and comment on a new study prior to reporting on it. This is how it should be done.

I would be very interested in hearing your comments on this topic. You can send your comments to me at resources@caddac.ca

 Huffington Post Article

On December the 7th the Huffington Post published an article titled, Mom's Postpartum Depression Linked To ADHD In Kids, Australian Study Finds ‘Parenting hostility' is connected to a child's eventual diagnosis or symptoms”. This was first brought to my attention on December the 8th when I was copied on a letter sent to the Huffington Post by a psychologist and contacted by a second psychologist concerned about the messages in this article.

In her complaint to the Huffington Post the psychologist stated that the by-line was,

incredibly damaging to parents who are parenting children with “invisible disabilities,” especially ADHD, which has already been so heavily stigmatized in the media.”

She went on to add that the byline

“… makes the results appear causal, when they are not, but it is also entirely misleading. Only several paragraphs in do you finally get to the critical point made by the researchers: “We suspect that children's challenging behaviour early in life may be connected to mother's postnatal mental health." Why not lead with that critical information? Why not avoid contributing to the vast amount of misinformation and misunderstanding that is already making it so painful for families of children with this neurodevelopmental disability?”

Although the article was edited and the title and by-line changed to “Study On Postpartum Depression And ADHD Stresses Need For Maternal Health Support, Moms shouldn't blame themselves, researchers say” by the Huffington Post within hours after receiving the complaint, I and others remain concerned about this article. The article you now see on the Huffington post if not the original article.

Here is a comment by a parent that was sent to the Huffington Post that I was copied on.

“I see that there are some areas of the article which state that mothers should not be made to feel blamed for their child's ADHD, and that a child's ADHD may contribute to depression in the parent. However, the title of the article, certain statements within it, and the direct quotes from Melissa Doody, paint an entirely different picture. These imply that depression in the mother CAN indeed cause ADHD in a child. Anyone who skims through your headlines or through this article will come away with that message…I feel sorry for Melissa Doody, since she clearly believes that she is responsible for her child's ADHD, when she is absolutely not. Spreading her self-deprecating statements around is not helpful, and is simply irresponsible.”

When I personally contacted the author of the article it was suggested to me that there was no problem with the reporting but that rather I and the psychologist who complained simply did not like the information the study highlighted. To test this theory I reached out to some other medical professionals to get their impression of this article. Several pointed out that they had significant concerns about this article and the messages it was sending. One physician stated that articles like this made her blood boil. Several mentioned the fact that fathers had been completely left out of the equation and that this was another case of blaming the mother for the child’s problems.

I consider this another version of the ‘Blame the mother syndromes’ that were taught to me in med school.  I could argue quite passionately that the dysregulated infant who will later in childhood be diagnosed with ADHD is in fact the cause of the mother's postnatal depression.”

And

“However, this also brings me to my other major concern with both the article and the study itself: it is hideously gendered, and contributes to further mother-blaming in the world of mental health. There is no mention of fathers at all, and yet "parenting" is the term used, where what they're really looking at is ‘mothering.’"

Upon examining the actual study professionals commented that,

“…critical confounding variables are unaccounted for (i.e. most notably, the genetic links between ADHD, anxiety, and mood disorders), are all weak, at best.”

And

“Also important is to note that they did not control for cigarette or alcohol use during pregnancy or pre or perinatal birth complications when exploring the association between maternal post natal mental health and offspring symptoms of ADHD.”

A few other issues with the study were noted; children were not necessarily diagnosed with ADHD but rather reported to have ADHD by their parents; depression was not evaluated as to whether it was an on-going depression or a postpartum depression; mothers were not screened for ADHD.

I received other comments questioning the validity of this study’s finding and expect to receive more in the future, but since I am still receiving correspondence on this article from concerned parents and professionals I felt that it was important to comment on it sooner rather than later.

If necessary, I will write a follow-up on the actual study itself once it has been further analyzed.

Again, please feel free to let me know what you feel about this issue at resources@caddac.ca

Heidi Bernhardt

About 75 people attended the live show featuring Patrick McKenna on Saturday night and if the laughter and tears was any indication everyone had a great time. Interestingly about two thirds of the audience were not conference attendees, which was unexpected but great bonus because it meant that we were reaching even more people in nova Scotia. The improve group was a blast. People were in stitches. I laughed so hard tears were running down my face. Patrick’s featured presentation “Is it me or the ADHD?” was inspirational and obviously hit home for many of the attendees. There was much nodding and also some tears in the audience. A young man pulled us aside at the end saying he wished he could stay and chat with Patrick but had to head out. He shared that he and his Dad attended with his Mom's insistence, so he was not too happy about attending. But, after hearing Patrick speak, so much had resonated with him that he now knew that he needed to think long and hard about getting an assessment making some serious changes. I guess we can’t ask for more of an impact than that!

Heidi Bernhardt

 

 

Patrick McKenna is on a mission to get the word out about ADHD: “People question the validity of ADHD because they can’t see the problem. If only those with ADHD could wear a bandage on their head 24/7 maybe people would not be so dismissive of ADHD symptoms which can cause a great deal of pain.” Rick Green, of TotallyADD, addresses it on a more personal level, “When I received my diagnosis at the age of 47 it explained so much. I finally understood why some things were so easy for me to accomplish and others were impossible to complete, no matter how much effort I put into it. It changed my life and the way I look at myself.”

In addition to taking the lead in reaching out to other comedians for this campaign, Patrick McKenna will be starring in “Is it Me or the ADHD?” along with the Improv group "Two Men & a Lady, during CADDAC’s Live show, “Living With ADHD, A Funny Yet Serious Look At Having ADHD” occurring on the Saturday night of CADDAC’s 10th Annual ADHD Conference, taking place this October 27th and 28th in Halifax, NS. The conference is geared to parents of children with ADHD, adults with ADHD and their families, educators, and the medical community.

10th Annual ADHD Conference

October 27 & 28, Saint Mary’s University, 923 Robie Street Halifax NS B3H 3C3
https://caddac.ca/adhd/events/3531/1540630800/1540742400/
Speaker Biographies: https://caddac.ca/adhd/wp-content/uploads/2018/07/Bios-final.pdf

Living With ADHD, A Funny Yet Serious Look At Having ADHD

This is a show for all ages, with couple and family discounted ticket rates

Is it Me or the ADHD? Starring Patrick McKenna and the Improv Group - "Two Men & a Lady
McNally Theatre, Saint Mary’s University, 923 Robie Street, Halifax, NS, B3H 3C3
Oct 27th, 2018, 7:30pm
https://caddac.ca/adhd/events/living-with-adhd/

Patrick McKenna and Other Canadian Celebrities Speak out About ADHD and Invite the Public to Join the Conversation #ADHD Speaks

On October 2nd 2018 CADDAC, the Center for ADHD Awareness Canada, launched “ADHD Speaks” a multiyear national campaign to get people talking and break the silence on ADHD.  People all across the country are invited to submit selfie videos and use the campaign hashtag, #ADHDspeaks, to join the conversation.

CADDAC’s hope is that the creation of the ADHD Speaks movement will finally provide a platform for those living with ADHD to have their voices heard. Canadians impacted by ADHD are still afraid to open up about this condition. CADDAC believes that there is still so much misinformation and judgment out there about ADHD that just continues to fuel the existing stigma. This has caused individuals and families to feel shame and remain fearful about sharing their struggles and experiences. This lack of discussion about ADHD has led our politicians and decision makers to conclude that their constituents and stakeholders don’t care about ADHD; that they don’t care about the lack of resources and serious consequences that occur when ADHD is not recognized and treated. That just can’t be the case when nearly two million Canadians are affected by this disorder.  We need to hear the voices of those impacted by ADHD.

Check out How a Few Minutes of Your Time can Effect Change!

CADDAC is inviting everyone living with ADHD, their friends and families, medical professionals, educators and celebrities, to share their experiences and revelations about ADHD by submitting a brief selfie video recorded using their smartphone. They can also send an audio message or written story if they prefer. People are also encouraged to share their stories on Facebook, Twitter, and Instagram, using the #ADHDspeaks hashtag. Participants can obtain more information and tips for recording and submitting their thoughts and stories on CADDAC’s website: www.caddac.ca.

Check out

October 2, 2018 Media Release

A personal ask from Heidi Bernhardt, the President of CADDAC

A personal ask from Patrick McKenna, actor, director and comedian

View Celebrity ADHD videos rolled out during October, ADHD Awareness Month 

Reading the title of this article, ADHD can be your super power immediately caused me a great deal of concern and I am sure angered many of the millions of Canadians impaired by ADHD. While this article is attempting to be uplifting, and the message that those with ADHD can find fulfilling careers is a good one, many adults with ADHD will find this article very disheartening and frustrating. It makes it seem that those with ADHD just need a diagnosis, some coaching and a good assistant to handle all the paperwork and they’ll be good to go. ADHD is on a spectrum from mild to severe and most often comes with coexisting mental health disorders.  Finding a medical professional who is trained in ADHD and not charging a hefty fee over OHIP to assess for and diagnose ADHD is an extreme challenge. Proven treatments such as CBT therapy and coaching are not covered by provincial health care and are extremely expensive.  The good news is that while research substantiates that ADHD can significantly impair learning these children can succeed in school when supported. But, how can we expect adults with ADHD to find fulfilling careers when many of our school boards and the Ontario Ministry of Education do not recognize ADHD as a disability allowing these students to access special education resources.  So, let’s please also discuss the many barriers that still exist for those with ADHD.

This comment has also been sent to the Toronto Star.

A Follow-up in our recent post "Changes to Stimulant Medication Treatment in BC - Why Should You be Concerned?"

A revised draft of the Safe Prescribing Guidelines was released by the College of Physicians and Surgeons of British Columbia (CPSBC) on April the 26th 2018. In the previous Guidelines or “Practice Standard”, the College required annual urine drug screens or pill counts for all adults on stimulant medication. They also prohibited the prescription of sedatives or opiates in any adult being treated with a stimulant.
The new proposed Practice Standard – Safe Prescribing of Opioids and Sedatives – has removed stimulants from the previous document altogether and the proposed Standard applies only to prescribing of opioids and sedatives.
CADDAC, along with the Canadian ADHD Resource Alliance (CADDRA) advocacy committee members, actively campaigned against the previous document since its launch in 2016. Both organizations are very pleased that the College has responded to these efforts and removed stimulant medication from these guidelines.

CADDAC would like to thank those of you who responded to our call to action and contacted the College and your MLAs about this issue.

Access CADDRA response HERE

Access the new draft document (focusing exclusively on opiates and sedatives) HERE

 

March 29, 2018

Dear Premier Wynne,

We at CADDAC were very interested when we heard your announcements regarding additional funding for special education and mental health.

Childhood ADHD

While this additional funding is welcome and certainly needed, the Ontario parents of students with ADHD are questioning how this additional funding will benefit their children. The fact is that if students with ADHD continue to be excluded from the categories of exceptionality by the Ontario Ministry of Education, and school boards in Ontario continue to use this fact to bar students with ADHD from officially being recognized as exceptional students this funding will mean next to nothing for them.

We have been promised that ADHD will be included as its own category in the new British Columbia Special Education Guidelines by both the former Liberal and now the new NDP governments. Yet there has been no change in Ontario in the past ten years, while other similar neurodevelopmental disorders, that are less prevalent, and often less impairing are listed.

I am attaching a letter that you sent to me ten years ago, outlining the very same response that we continue to receive from the Ontario Ministry of Education. Yet, despite all of these assurances we continue to hear from frustrated, desperate parents sharing heart breaking stories of children being stigmatized and suspended for their medical disability.

While the matter of including ADHD within a category of exceptionality is made out to be insignificant and a mere technicality, in reality it is causing huge issues for many of our students as a recent survey of parents has demonstrated. While it may not be the Ministry’s intent when excluding ADHD from a category of exceptionality, the message educators are receiving is that ADHD is not a disability and does not impair learning enough (even when abundant research tells us otherwise) for the Ministry and boards and therefore teachers to take it seriously. Teachers have shared this belief with us countless times, and they convey it directly to students by accusing them of not trying hard enough. Parents are told that ADHD does not qualify their child for special education support because it does no impair the child “enough”.

Interesting things happen when disorders are listed in a category, education for educators flows and students with ADHD are better understood and supported and representation occurs on SEAC’s and on MACSE giving a voice to those with ADHD.

Many Ontario parents that we hear from on a daily basis are frustrated beyond belief. They have expressed doubt that change will happen for their children with ADHD n Ontario under your present leadership.

However, I do think that this could change. I believe that they would really like to support your proposed funding initiatives for special education and mental health however it seems that children with ADHD have been left out again. Parents will require an honest guarantee that this funding would indeed benefit their children with an explanation of how this would occur. Unfortunately they have lived with platitudes and rhetoric for far too long.

Adult ADHD

Adults with ADHD also see themselves as excluded. There was no mention of therapy for those with ADHD, only anxiety and depression. Research informs us that untreated ADHD can cause anxiety and depression and that Cognitive Behaviour Therapy is hugely beneficial for those with ADHD. When we treat anxiety and depression without treating the underlying ADHD all treatment is unsuccessful. In addition, adults with ADHD are being charged over OHIP for assessments. Why are some mental health disorders supported in your additional funding and other not?

We are also contacted by adults with ADHD routinely and I just presented to a large group of Ontario adults with ADHD. I believe that this group would also really like to support your plan for additional funding for mental health, but they too find that they have been given no reason to do so.

I would like to meet with you Premier Wynne to discuss how we can assure those with ADHD that your initiates will offer them additional support and services.

Sincerely,

Heidi Bernhardt

President, Centre for ADHD Awareness Canada

 

With cc to

Hon Indira Naidoo-Harris

inaidoo-harris.mpp.co@liberal.ola.org

Hon Helena Jaczek

hjaczek.mpp.co@liberal.ola.org

Premier Kathleen Wynne and the Toronto Star were sent this letter by CADDAC recently in response to the Liberal party's promise for increased mental health funding, in particular for children and youth.

Hon Kathleen Wynne

Leader, Liberal Party of Canada

Dear Premier Wynne,

Additional funding in Ontario for mental health is certainly needed and very welcome. Resources are few, wait times are long and physicians are charging over OHIP for assessments. However, parents of children and youth with the most prevalent childhood mental health disorder, Attention Deficit Hyperactivity Disorder (ADHD), and adults with ADHD are wondering if they are going to be left out again. ADHD is never mentioned during metal health awareness campaigns, in press releases by mental health hospitals, or by national and provincial commissions on mental health. ADHD is not being addressed by our government. There are no working committees on ADHD in Ontario although significant socioeconomic costs result when we do not diagnose and treat this disorder. Abundant research has shown less academic achievement and fewer years of education leading to lower paying jobs, more accidents, an increase in additional mental health disorders, more substance use and abuse, less employment and a greater need for social assistance, more involvement in the justice system and a two-fold risk of early death. When we link these costs with the fact that ADHD is one of the most treatable mental health disorders, that students with ADHD can go on to post-secondary education when supported and become successfully employed in the career of their choice, it makes no sense that we are not giving this mental health disorder more attention.

Heidi Bernhardt

President, Centre for ADHD Awareness Canada

The Ontario election is quickly approaching so this is the opportune time to make your voice heard. You MPPs think that their constituents do not care about ADHD because they do not hear from families with ADHD, but they do hear from parents of children with Autism.

Is this true? Are you uninterested in ADHD?

Are your MPP and those running in your constituency aware of government policies that impact families with ADHD?  For instance, are they aware that students with ADHD in Ontario do not qualify for recognition as exceptional learners?  This identification would give them the same rights to special education resources as students with other neurodevelopmental disorders such as learning disabilities and Autism. Are they aware of the extensive wait lists and additional costs of receiving an ADHD diagnosis and treatment? Are they aware of costs to the health, child and youth, social service and justice systems in Ontario when we do not diagnose and treat ADHD?

For more information on ADHD advocacy in Canada access our past Blog.

CADDAC is asking parents, extended families, adults, health care providers and anyone interested in children and adults with ADHD to contact their MPP and those running in their riding.

Your MPP is required to meet with any constituent that requests a meeting.

We need you to do at least one of these things before the June election:

CADDAC has developed Election Documents for you to use, points for you to make and questions to be asked when meeting with your MPP or attending a town hall meeting. Template letters are also available to assist in your letter writing.

 

 

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