An open letter to paediatricians

Uncategorized Nov 07, 2020

Dear Doctor…

I brought my young son to you for help and answers. We were not seeking a diagnosis although that is what resulted.

When you asked me how I felt about my sons ASD diagnosis – my answer was that it was ‘shit’ and you agreed.

Perspective.

We are raised to believe that doctors know things. That they are highly educated and extensively experienced and far more knowledgeable about medical and physiological matters than we humble parents.

A doctors “bedside manner” is often the difference between a mother leaving an appointment with despair and grief, or a mother leaving an appointment with a new perspective on life and the future of her family.

Dear Doctor, I cannot convey to you how crucial this state of mind is for a parent.

You told me that my younger son would break my heart because I would see all I missed out on with my eldest son. But you were wrong.

Autism means that we will never take for granted the tiny ‘mundane’ neurotypical things my younger son does.

Autism means that we are re-educating ourselves on what is a nutritious and natural diet to consume

Autism means that we have learnt to slow down our lives and be present in the moment

Autism means less TV and more jumping on the crash mat

Autism means that I delight in something as simple as seeing my beautiful boy look into my eyes and smile

Autism means that my younger child will grow up knowing that it is ok to be different – that a person with dwarfism is not to be stared at or avoided and that a child in a wheelchair is not to be excluded or ignored

Autism means I am finding a new career path in something that actually fulfils me and helps others

Autism means that we have met amazing members of our community who give freely of their time, their money and their love expecting nothing in return

Autism means that my husband and I have had to reach a new level of communication and closeness

Autism means a new culture of non-judgment in our lives about everyone and everything

Autism means that I have learnt a new level of compassion as a mother and as a human

As parents, we are the ones who will drive our child’s growth and development whether that be through countless hours of therapy or by working two or three jobs to pay for it. We might spend hours a day researching new interventions online or hours at night in the kitchen ensuring a balanced diet that our child will actually consume.

We put in the hard, hard yards in helping our child reach their potential and we need to know there is a big shining light at the end of that tunnel to get us through. A parent presented with a diagnosis with a negative perspective is robbed of that light. The family is robbed of the opportunity to let their story unfold for itself. They are robbed of their optimism and their hope.

There is no such thing as false hope. There is only hope – or no hope. And please believe me when I tell you – we need that big bright shining ball of hope. Sometimes it’s all that gets us through the day.

So Dear Doctor – the next time you are delivering a diagnosis to any family and to any child. Choose your words wisely.

Your authority allows you to put a label on a child but you truly know nothing about the path that family will walk and what it will mean for them.

Don’t help us to place limits upon our child. Show us how we will walk another path and how it leads to amazing places.

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