A double autism diagnosis – my journey to acceptance

By Monique Cain

Before you have kids you have a vision of how you think family life will be..what you think your children will be like, the things you think they might be good at and what you will be able to do or achieve as a family.

So when the reality of a diagnosis sets in and you realise that life is going to be quite different, there can be a feeling of loss. It’s almost a grieving process, grieving the loss of a child you thought they would be or the life you thought you would have.  

Even after 5 years, I still feel this sometimes.

Every day there are reminders of how things are different; catching up with friends and they are all discussing how they wish their children would stop talking and go to sleep, while I’m sitting there in silence, preying my child would say one word. Going to a Kinder concert, all the kids are singing songs and doing actions, while your child is having a meltdown in front of everyone, laying on the floor or trying to escape.

Going to a shopping centre and a stranger questions, “why your child is not wearing shoes”, another comments “they are too big for a trolley”.

When it feels like you are torturing your child, just by trying to get them dressed or brush their hair.

Birthdays, Christmas and other special occasions are hard because the kids have no comprehension of the significance or what’s really going on.

Being an autism parent can be very isolating. We got to a point where we didn’t want to leave our house or attend any events or occasions because it was too confronting, an incident would always happen, it was basically all too hard.  

After both of my 2 children were diagnosed with ASD, life took its toll and I was heading down a road to a dark place. I was still working, taking the kids to all their necessary therapies and appointments, they were fed and being looked after but I was suffering in silence. Crying myself to sleep, drinking too much, too often, I was desperately unhappy.

I couldn’t talk to anyone about the kids without breaking down in tears.    After reaching a really low point, I decided I didn’t want to be unhappy anymore for my sake and for my kids. I was very kindly offered some counselling sessions which at first I was reluctant to do but looking back now I realise was a major turning point!

The first few sessions, I pretty much cried the whole time. The therapist reassured me it was completely normal and ok to feel the way I was feeling and have the thoughts I had. She also encouraged me to write, which has been an amazing form of therapy for me.

Since then, I have also attended seminars where they have emphasised the importance of looking after yourself and the importance of your happiness because it can affect your children too.  I don’t think that it‘s a total coincidence that since I have improved myself, my happiness and my mental state, that both of my children have been improving too.

A better frame of mind, a more positive approach and outlook, more hope, and an acceptance of how our life is and who our kids are is where we are now. I need to try to be the best me so my children can be the best and happiest that they can be too. 

All you can do is your best, on any given day, considering how you feel and what you are faced with. I try to take things day by day, not thinking too far ahead.

We obviously still have our moments, just like anyone, but I can truly say we are much happier and we can experience true joyous moments.

We love our children dearly, they are happy, unique, beautiful souls and I am proud to be their mum! 

Monique Cain is a mother of 2 children diagnosed with ASD (Autism Spectrum Disorder).  After initial struggles with her first child, daughter Madi, requests from teachers of how they can understand or interact with her better and comments from another child that “Madi is dumb” and “Madi doesn’t know anything”, Monique started writing the now published ‘The Everyday Autism Series’.  The series includes 4 illustrated children’s books written in a very simple, practical yet informative way, using Madi and her families true experiences to help provide understanding and raise much needed awareness. Continuing her mission of raising awareness Monique is now blogging about her 2 children to give hope and support to other children and families living with autism. Find at more at her website and follow the family’s journey over on Facebook @theeverydayautismseries