A Second Child Changed So Much

We’ve lived with autism for four years, some days it feels much longer. I’ve always wanted kids, wanted what you see on TV, in magazines and what your parents teach you.

A boy and a girl. A perfect family. But what is perfect?

Four years ago we had our first child, a gorgeous little boy that melted our hearts with his wonderful smile and infectious laugh.

However, from a very young age things never felt right. He slept for an hour at the most at any one time, refused to have blankets on him, or wear a hat.

He also never stopped moving! He always looked like he had ants running under his skin 24/7.

Then the milestone regressions started, one step forward, two steps backwards.

Now everyday we juggle between Jeckyll and Hyde. We have strict routines we have to follow or things spiral down very quickly.

We experience constant stimming, tooting and humming from the second he wakes up.

I will say we are lucky enough to have an autistic child who is starting to become semi-verbal. Before his 3rd birthday he never spoke more than 5 broken words and only when prompted.

Now although still mostly mirroring words alongside a lot of babble we are slowly starting to understand more of the broken and unspoken language.

It’s lonely to have a child who doesn’t speak much, doesn’t ask questions, doesn’t have a conversation with you about their day.

We find it very frightening that we don’t know when he’s hungry, thirsty, tired, scared, or sick.

He still wears nappies to bed and out of the house. He has no concept of danger at all. He has no friends.

We rarely go out as a family in fear of how he will react.

We’ve only left the house once in 4 years to do something as a couple, child free.

We leave the house separately, and never say bye as it may cause a meltdown. Worryingly I don’t know if he’d care if we never came back.

He wouldn’t even notice we were gone. He never asks for us, has no concept of time passing and doesn’t understand how to miss someone. He has never told us he loves us.

I don’t even know if he understands love. We have very few photos of him from the age of 2 onwards. He refuses to stay still.

We’ve had to learn the art of videos followed by screenshots!

Everything he enjoys we have spell so he doesn’t understand, or we’d have Hyde if we mentioned banana and never got him one!

We have continuously fought everyone all his life, his grandparents, health visitors, doctors, school, local authorities, psychologists with his diagnosis and any help with his education.

Raising a child with autism was never a journey we asked for or expected when I got pregnant and everyday is an exhausting challenge, mentally and physically. But everyday I’m happy that I get to give my baby a cuddle and a kiss (even if he does wipe his face and say yuck every time), everyday I get to see his smile and hear his laugh.

And everyday I know he’s doing the best he can. But I worry for his future, every, single, day.

We’d been toing and froing with the idea of a second child for a while, the constant “what ifs” never left my mind.

Last year I got pregnant again and hoped for a girl. I always wanted a little girl, but with the worry of autism and “statistics” I wanted one more than ever. My 20 week scan came and my heart sank, the words “it’s a boy” made me cry more than I’ve ever cried before.

I worried everyday from then that our next child may have autism too.

I constantly checked website after website in the hope that one day I’d look and the statistics would say something different, something more positive.

Some people may hate me for being honest, but autism is tough. It’s a 24/7 job without a paycheck. You never ever relax.

I didn’t know how we’d cope with two ASD kids under 5.

My second little boy was born three months ago and everyday since then has been a rollercoaster. We watch his every movement, his every reaction, every smile, waiting for any signs.

It’s so hard to enjoy a child when you worry about their future every single day. It’s even harder than I thought it would ever be to care for a newborn with an ASD child in the house.

A newborn needs constant care, a child with ASD needs constant care. My 3 month old wants to be cuddled to sleep all day everyday, refusing to go down in his bed to sleep.

Impossible when you have another child to look after, impossible when you have another child who doesn’t understand why your undivided attention is suddenly not just on him anymore.

Even harder when you have to go back to work in two weeks and your partner has to do it all alone. But we remain positive, we adapt, we try new strategies, we try and revolve our daily lives around our son’s needs to ensure the safety and happiness of both him and his little brother.

We may be at rock bottom now, but were living with so much hope everyday that things will get better.

Hope is all we’ve got to hold onto.

Written by, Diane Thompson

My name is Diane and I am mum to two beautiful happy boys, my son Brayden aged 4 and Kai who’s 3 months old. Brayden was diagnosed last December with ASD.

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