Families winning at life with a child who has autism – Reid

Please introduce our readers to your amazing family-

Our family consists of myself(Kristy), the boy – Reid and my partner Tracey. We met when Reid was two. She has stepped up to the plate and embraced Reid, and he has come so far since she’s come into our lives. She’s an amazing parent and he adores her. Sometimes I feel like the third wheel!Reid family

How old was your son when he was diagnosed with Autism?

Reid was diagnosed just after his second birthday. I had asked my G.P for almost a year to refer me to someone regarding my suspicions about Reid’s quirks, but I was always told that his behaviours were within the realm of normal. I worked in disability services which had included respite camps as well as 1:1 school support for a nonverbal girl with Asperger’s. I knew that what I was seeing wasn’t typical development. I moved and saw a new G.P When I mentioned it to him he said that he would refer me to a specialist. Right away the specialist said he was 99% sure it was Autism, but wanted blood tests done to rule everything out. We went back two weeks later and they reassessed. He told me it was text book ASD!(Autism Spectrum Disorder)

Many parents say they knew their child was Autistic – was this the case for you & how did you know?

From three days old I knew something wasn’t right. He screamed for ten to twelve hours at a time, and would sleep only five to eight  minutes on a loop for almost the entire first year. He gagged when he fed, and he always seemed in pain. Hated noise. Hated being touched by other people. Hated the bath. Hated the sun. Eye contact was not there. No mimicking smile. He didn’t open his hands from fists until around 6 months. He wouldn’t let me put him down.

“I literally wore him 24/7. Even in the shower”

Also, when he started talking his speech was odd. His first word was cat. He could count to ten and back again by eleven months. He was repeating entire conversations by eighteen months, but didn’t call me mum until he was around two and a half.  But he would use words like frustrated, freezing and hilarious.
At eighteen months I started begging for help when he randomly started toe walking after ten months of normal walking.

“Everything just kept adding up to Autism”

Can you share with us a bit about the way you dealt with the diagnosis?

I was shocked. Which I didn’t expect.
I was shocked that the diagnoses came so easily when I finally was able to see someone. And I was sad for a second. Wait… not sad…fearful. Fearful because I’ve seen so many variations of the spectrum through my previous career, and I was terrified of the unknown. Around his third birthday he went into a regression for a few months and it was heartbreaking. But it makes me appreciate him so much more. The fear that sits in the back of my mind that I could lose him to a regression forever helps me when the days are rough.

 

How has Autism affected your life?
The world of Autism is a lonely place. I’m ever so blessed to have some awesome online ASD mum connections. But day to day can be really isolating. For example, many people don’t understand that you just can’t know if you can attend something until that morning. Especially when the day before you were out and doing fun stuff.
It’s also helped me to know who is on my team. We have some amazing people in our lives who really do love Reid and understand him as he is. ASD can be all consuming. The trick is to have someone who can pull you back into reality when you need it.

What are some things your son has taught you about the world?

He has taught me so much. How to love. How the fear of loss can rock you to your core. How to laugh so you don’t cry. How to appreciate the small things. To look at little details like a leaf, or a different shaped rock and love it. To dance to the beat of your own drum. And above all he has taught me to be stronger than I ever thought I could be.

What advice would you give to other families who have a child with Autism?

Embrace it. Don’t focus on the cant’s and the hard times. Don’t ignore them either. Just feel them for what they are and let them go. Look at what your child can do. Really look at them. It will blow your mind how their brains work. From time to time join them in their world. It’s a fun place to be.

Reid bubbles

I like to live by the following two Quotes…..

“This too shall pass”
Good and bad. Nothing is forever. Enjoy the good days because tomorrow might not be so great. And don’t dwell on the bad because it’s not forever.  All I ever wanted was to be a mum. I don’t take it for granted. At any point it could be taken away and I would hate to think I spent my last day with him with a negative view.

And…..

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away. It is not important that he should mature as soon as an apple-tree or oak. Shall he turn his spring into summer? If the condition of things which we were made for is not yet, what were any reality which we can substitute? We will not be shipwrecked on a vain reality”.-Thoreau

This one explains itself pretty well. The last section is my go to when I feel like I’m being sucked into a negative thought pattern.

We will not be shipwrecked on a vain reality.

This is our life. This is our reality. You can hate living it every day or you can embrace it and love it. It’s not always easy to see the positive, I agree. But it’s always there. Even on the days he is head banging and screaming over and over. Even on the nights I need a vodka or ten,  I remind myself how many other people don’t ever get the chance to parent. So many other people long to be parents.

“So many people would kill to experience the level of love my heart feels for this boy. So many people would give their lives for one more hug from their kid”

I’m not perfect. I am far from it.  But I do try to remind myself that even in the worst ever times,  I am lucky. I’m so very lucky to have the opportunity to love so deeply. I never knew how much a heart could hold until I met him.
It’s a level of love that even in the darkest hour still burns.

And it’s because of that, because of him, that I refuse to become shipwrecked permanently.

Love Kirsty xx

Love Kristy xx

 

 

About Chrissie Davies

Chrissie Davies is an educator, consultant, writer, loving mama via an open adoption, and passionate advocate for understanding children with challenging behaviours. Through her consultancy Chaos to Calm, Chrissie specialises in creating understandings and strategies to meet the needs of children with challenging behaviours. She supports both families and teachers to create more awareness of the different ways to use communication and emotional engagement to make positive changes in children’s behaviour.

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