A Glimpse into our autism: Expert

5 September 2018

Dear Friend,

Yesterday I was introduced as an expert...

It shocked me.

I don't feel like an Expert.

I am just a mum...

When the big lad was diagnosed my expectations did not match the reality!

I expected that a Dr would coordinate his care and make sure he received the support and therapy he needed.

I had read that early intervention was key and I honestly expected to be directed to a team of Professionals who would immediately begin working miracles with my son.

In fact the opposite happened.

Most people told me that my son was too young and I had to search for help.

Several years later and I have dealt with around 30 different Drs, therapists, teachers etc who have contact with my son.

  • I found the right support
  • I bullied Drs. into therapy programs, despite being told my big lad was not 'bad enough' or 'old enough' 
  • I have acted as the link between professionals
  • I have coordinated appointments
  • I ensured that we weren't focusing on too much at once
  • I anticipated future needs
  • I found and then fought for the right school
  • I become the 'reluctant expert' in my son

  • I am not writing this for sympathy. Nor am I a martyr. I am not unique.

    I love my son and want to help and support him where ever I can. But do you know how difficult it is to spell out all of your child's problems in black and white, again and again?

    I can understand why some parents have chosen to opt out of therapy or how many parents have anxiety issues or how some parents have become consumed by "autism" or how many marriages fail.

    Special Needs Parents are under immense pressure!

    You have to get this right!

    It is far too easy to become focused on the what needs to be done and forget about the why and the who we are doing this for.

    As a mum, I want my focus and energy to go into loving my son.

    I want him to get the support he needs. But I want my son to have a 'normal' childhood that is not dominated by 'autism'.

    Sometimes, I don't want to be the expert, I just want to be mum.

    Yesterday I was introduced as an Expert...

    It shocked me.

    But I guess they are right because I am the expert when it comes to my son.

    A glimpse into autism is a series of short letters that explore the impact autism has on our family on a day to day basis. Disclaimer: this is our experience not all autistic people are the same.

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