Child Spotlight: Matt & Charlie

 

1. Please introduce your child

My son is named Charlie, he is seven years old and an absolute delight.  He was identified with extremely severe autism, what is now known as L3.  He is non verbal autistic with severe sensory challenges, food aversions and similar issues.

2. What were your thoughts when you first found out your son was going to receive a diagnosis?

I was not shocked as we were somewhat prepared having struggled with Charlie’s development when he was noticeably missing gateways (verbal mostly).  It was still quite stressful as it felt like so many doors had been closed on his future so suddenly.  My wife and I had discussed the possibility, but when he received the diagnosis it felt real all of a sudden, as if the doctor made it true.

3. Have you ever been at work or elsewhere at a time of emergency?

As a military officer I was actually overseas when Charlie received his diagnosis.  Similarly, I have been away when he has undergone some significant challenges, including being kicked out of a day home.  It is a struggle because I felt I had to balance career aspirations and commitments with the needs of my family.  In many ways I felt like I was failing as a husband and a father, even though my wife encouraged me to stay with my unit.  To this day I struggle with the competing needs of duty and family.

4. How has having a child with a disability changed you as a parent or made you the parent you are today?

I think Charlie’s disability has made me a more patient parent.  I have children from a previous marriage and in retrospect I regret my behaviour with them sometimes as I think I could have been more understanding and patient.  Seeing Charlie’s struggles personified really helped me understand how difficult things can be.

5. What gaps in the system have you noticed?

We are well educated adults and we still struggle navigating many of the support systems.  They tend to be quite opaque and advice offered online is either inaccurate, or frankly, a scam.  Simplifying the structures to support families with severely disabled children would be of incredible benefit, most of the times these parents are already struggling.

6. What is the hardest part about being a disability parent?

Fear for Charlie’s future.  I worry we won’t be able to care for him, that he will miss so many opportunities.

7. What is the best part about being a disability parent?

The pure joy Charlie feels when he is regulated and happy.  So often time with him can be taxing or a struggle, but the rewards of his pure happiness make it worth it.

8. If you could give any advice or guidance to a fellow dad receiving a new or similar diagnosis, what would it be?

Be patient with your child.  Be patient with your spouse.  Be patient with yourself.

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