Bell Let’s Talk Day seems an appropriate day to talk about why youth and adolescent mental health has become a passion of mine.  During my career as a Registered Nurse, I had exposure to and compassion for those living with mental health challenges,  but it was never the setting in which I chose to work. For many reasons that has changed and I am now an advocate for appropriate and efficient access to mental health care for youth, particularly those living in rural settings and those attending post secondary education.

First, more about the journey to get to where I am today.  In 1997 my fraternal twins were born, 4 weeks early, induced  due to some complications, a boy and a girl – just like my own maternal grandmother. Despite being preemies, they thrived and hit all developmental milestones, that rough period seemed to have passed by and we enjoyed our growing babies.  The year 2000 brought empty threats of a y2k meltdown, a new baby brother and a very sudden and life changing illness for the eldest of our twins. For 3 weeks he was acutely ill, we never found out with what but all signs point to a likely strep infection. The acute period of that illness passed, but significant changes had occurred in our boy. He was now completely withdrawn, no longer sleeping,  and refusing all food except chocolate milk. He stopped playing with his sister and started watching Toy Story endlessly, all the while constantly rocking on the couch. Unfortunately this coincided with my return to work and the children starting a new daycare. When I came at the end of the day, the staff would tell me how he had spent the day sitting in a chair, completely withdrawn from the other children – including his twin. I don’t support the “anti-vax” movement or think things “cause” autism – I prefer to rely on science, it was however becoming increasingly apparent that there was more going on for this little boy then the physical illness he had been battling.  I think Aspergers would have presented itself at some point in our life, but I believe the illness he suffered provided some fuel for the fire. When I look back at videos of him as a baby and toddler the signs and symptoms are so obvious, the illness just seemed to be the tipping point.

Trying to get some sort of a diagnosis for a child under the age of 5 is damn near impossible! We have been blessed with an incredible pediatrician who listened to everything I said about what was going on and agonized as much as we did about trying to figure it out. I started visiting numerous specialists (both medical and developmental) to try and determine what was going on. What an experience to test one’s patience and resolve. Travels to Sick Kids, appointments with Allergists,  Rheumatologists and Psychological assessments, and no answers.  I was given “diagnoses” that never really fit:  Pervasive Developmental Disorder Not otherwise Specified (PDDNOS) – which basically amounts to “we don’t really know what to call it so we will call it this”, tourettes (because of what I now know was echolalia), even PANDAs, a term used to describe a rare disorder that occurs after a streptococcal infection. None of these diagnoses fit – and of greater concern he was about to start school. From a behavioural perspective this was going to be a real issue as he would be physical out of frustration, spend his time rocking, disengaged from others andexperienced frequent meltdowns. He could not tolerate certain sounds, smells,  textures and the feel of certain clothes. He became obsessed with things: Toy Story, Thomas the Tank Engine and then Nascars. He had one spot in our house where he liked to line his Nascars up and would lose it if anyone even touched them.  At this point we decided to move back to our home town, thinking that he would have a better shot living in a community that knew us and would support us – and to a large extent he has had that, althought not without challenges.

At the age of 5 I was finally able to have confirmed what was becoming increasingly apparent. A developmental pediatrician reluctantly provided the diagnosis of Asperger’s Syndrome. I say reluctantly because I was told that this MD did not necessarily believe that  diagnosis because my child did  make eye contact but was providing it as there were some identified concerns – this MD has since apologized to me for generalizations as further evidence has noted not all kids with ASD present like the text book says.

But a diagnosis did not provide peace, rather it became a stepping stone to years of advocating for the supports he needed to be successful at school. Regular meetings at school, regular calls from Prinicipals and teachers, regular battles reminding them about his diagnosis and the need for appropriate supports.  I had become “that” parent. My next blog will focus on issues around access and supports for parents and children, particularly in rural areas. Let’s just say it was a battle – but then it seemed to get easier.

Until Grade 8,  when suddenly his twin started having a difficult time. Siblings of children with ASD live with lots of stress themselves, more so when they share the connection of being twins. Our daughter has always felt the need to be his protector (and also to share what he had done at school that day – not always to be supportive!).  When they were in Grade 8 our daughter’s mood and behaviour changed substantively. She became very restrictive in her eating and began exercising religiously. She also began making comments  that reflected body image issues. Very quickly her health declined and we needed to seek treatment for anorexia.  The initial experience in seeking treatment for our daughter was horrendous as we were referred to a program in Toronto, where I was told I would have to drive her to that facility every morning to spend an 8 hour day. When provided an explanation about the reality of where I live, the fact that I have a job and two other children – one of whom needs a fair amount of support – there was very little flexibility. Fortunately, we were able to get into an incredible program close to home, a program that made all the difference for our daughter.   This was one of the most difficult times in my life, my daughter was on the verge of being sent to CHEO in Ottawa for treatment, and at the same time, her brother began another rough period, likely due to concerns for his sister and beginning the preparation to transition to high school.  I had to make an incredibly difficult choice, take the bed at CHEO and leave my son to cope on his own, decline the bed at CHEO and hope my daughter began to recover. The choice made was the latter, I had great faith in the team we were working with and my daughter. Fortunately, that was the right choice as she began to slowly recover and is now healthy, although will always live with an eating disorder.

My twins are now 17, preparing to leave home in the next few months. This raises new concerns and worries, this transition will be a bigger one for my son. Along with being away from us, he will be away from his twin – and from friends he has had since he was 5.  Over the past few years I have worked to ensure he is able to advocate for himself, I stopped attending school meetings once he started high school. He knows that he needs to learn to do this on his own. He and I have battled for the past 4 years over the need for his IEP to remain in place – he telling me it wasn’t necessary as he didn’t need help – me insisting it was to help him transition to post secondary education.  At 17 he has a very strong support network of friends – 2 have been his friends since he was 5 and know what he went through when he was little.  He is very social – disputing the label that all kids with Asperger’s are “anti-social”. But he still has struggles – he continues to be unbelievably rigid – something I challenge him about regularly. He continues to struggle with a “rules based focus” and feels the need to regularly share his opinion and I have to remind him that there are some conversations that should ONLY occur in your head.   He feels the need to share with his siblings every single thing he thinks they do wrong.  At 17 he still has many fine motor skill issues and thank god for computers as he struggles to write legibly. He still has restricted interests and obsessions – so no longer NASCARS but his own car that he purchased with his money. There is lots to celebrate too though – as mentioned he has a very large group of friends, his teachers like him, he has a part time job and is preparing for post secondary education and a career. He remembers the time when he was little and talks about that and what it was like for him. He feels he no longer has “Autism” and tells me I think everyone has Aspergers (I think I have a pretty good radar for those that do!). Then  we will catch him rocking or telling someone to get out of “his spot” ala Sheldon Cooper.

So what have I learned? To know when to speak up for my son (and daughter) and when to back off. The harmful impact of words – my daughters eating disorder was precipitated by bullying comments made by another girl in her school in Grade 7, when she sought help from within the school she was not listened to.  I have learned the difference between what is fair and what is equitable – they are not the same thing.  I have learned that I while I support the terminology “Special needs” and those who truly have special needs. I hate the term used by some as a way of excusing what is essentially bad behaviour – my son has some life challenges but that doesn’ t mean he gets a “get out of jail free card” because of his diagnosis, it simply means he has to work a little harder than everyone else.  There have always been consequences attached to behaviour — being disrespectful or hurting another child was never rewarded.  I have learned that while there are many “experts” and I appreciate their knowledge and expertise – it is I who am the “expert” when it comes to what is best for my kids. I am learning about the need to let go, while still being a support. Most significantly I have learned about the absolute disparity of services available to youth transitioning to post secondary education and employment, about the limited access and supports for parents and youth living in rural settings.  I have learned that sometimes you do need to become “that parent” in order to make a difference.