Navigating Through the World of ADHD Bureaucracy I MyMommasHands

Bittersweet – Navigating Through the World of ADHD Bureaucracy

My son has ADHD (Attention Deficit Hyperactivity Disorder) and I felt, up until now, it was his story and his alone to tell. Most of our friends and family are aware of his diagnosis but I have steered clear from sharing too much publicly about the road we travel. His privacy has been and continues to be of the utmost importance. That being said, if our experiences can help others I want to reach out and let people know – you are NOT alone – even if it feels like you are.

I hate the word disorder and disability. They are limiting and useless, but in a world bound by classification we have had no choice but to label away – even celebrate official documents that give us access to assistance. No label no help – so this is our story….

Over the past 5 years we have seen doctors & therapists – convened with teachers, principals, special education facilitators and committees. We have been added to wait lists and considered for placements in schools that specialize in learning disabilities. I have read multiple books, addressed diet and exercise – combed through legal documents and drafted letters.

The financial cost has been prohibitive:

ADHD Assessments: $2,000 – 3,000 in Canada – and as an aside I think that this is the only way to truly diagnose ADHD. Would you go to anyone besides a cardiologist to assess the health of your heart?
Therapy: $100 – $200 per hour if you opt for a psychologist
Tutoring: $50 – 75 per hour, while you wait for accommodations
Time Off of Work: Incalculable…..and the list goes on and on.

Trees in the Woods
We are not rich people, but we want to support our child. My question is – why does the system make this such a difficult task?

The first solution we were offered were meds. A “dime store” remedy that would “solve” our problems. Leaving the pro/anti medication arguments aside…why can I medicate my kid with ease but am unable to find affordable academic and/or therapeutic support for our family? When does he learn techniques to thrive in his own skin? He processes life differently, is uniquely gifted and much of that is due to his ADHD. Quite frankly, the positive side of this “disorder” is grossly overlooked.

We now know more about what to do and how to approach these matters – but you need a degree in bureaucracy to plow through the obstacles blocking your way. What if you don’t have the time, means or knowledge? Then what? Your kid falls through the cracks? That is a completely unacceptable answer.

ADHD is a growing issue. In the States as much as 10%! of the population has been diagnosed. The standard educational system is simply not equipped to deal with the needs of kids with ADHD. Self esteem suffers not only as a result of the disorder but as a result of the way children with differences are treated in a highly structured system geared towards educating a specific kind of child. Why are alternative options so damned expensive and sparse?

We would give anything to send our son to the Dunblaine or Arrowsmith Schools, where they use cognitive training programs based on the principles of neuroplasticity – but with a price tag of over 20k per year, we simply cannot afford this kind of help. The answer? The Canadian government offers a tax credit for children with disabilities to assist with the costs. No one tells you how hard it is to actually get this credit. ADHD qualifies but it is very difficult to get approval. We are now in the appeal process.

We all read about disenfranchised youth and shake our heads – where are their parents? Why didn’t they get help? How come people rarely address the lack of support? The lack of understanding of what it takes to raise a child with needs that differ from the norm? We throw money into a broken penal system and the military, but decrease funds available to schools, the mental health system and organizations such as Integra – lifelines that actually attempt to help families navigate a crappy system.

Children, simply put, are our future and the ones that see things in a different light are quite often our brightest innovators. The next time you read a paper or judge someone from afar and wonder where the parents are – maybe a better question to ask would be – where have our priorities gone?

If you are in Canada and need help navigating the system you can contact me. Happy to connect and share our experiences:

* It’s been tough to get the time to blog these days but I am recommitting – soooo back to the food! Join me this weekend for the perfect bittersweet chocolate fudge frosting. After years and years of searching for a replacement from my grandma’s super delish icing – I’ve finally done it!

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