When you get pregnant you have all these snippets of things you’ll do and what your family life will look like.

We did when our eldest was born we were over the moon, he was what I would call the perfect baby, 12 hours of sleep each night 2 2 hour naps each day and he never cried, he smiled all the time. He was also super active he sat, crawled, walked and climbed out his cot early.

After he was 1 he said a few words but quickly they disappeared, I began to think is there something going on with him, was he deaf as he didn’t respond to his name but then thought he couldn’t be as if he heard the Thomas the tank engine tune in a different room he’d come running for it, it actually became our way of getting him to come to us for a while.

For a long time it felt like he was in his own bubble I questioned his HV about it, he said not to worry, I googled and found autism flash up, the lack of responding to his name, the lining up of toys, the lack of eye contact it all fitted in with him.

Noone believed me they kept saying he’s just a baby (he was 18 months) mother’s instinct was telling me different. My mum and step dad eventually saw it and it made me push harder via his paediatrician who did after watching him for a while say “I think the referral won’t hurt” so the new waiting game began.

When the day came to meet the specialist developmental paediatrician he was just over 2, that morning I started having doubts as to if it was all in my head. We went sat down and it felt like we answered 101 questions from how our pregnancy had went to that day. Everything he had ever done or not done was noted down.
We got asked if we had any concerns and I said I worried about autism. Unexpectedly the Dr agreed there and then.

At that time we had more sense of relief than grief, those dreams we hoped for our son were vanishing but the relief we knew why he did the things he did or didn’t like certain things was good to.

From there we still had hopes that he’d go to a mainstream school, we knew we had challenges ahead but we never knew what they were or how hard it would be.

We are now 6 years on from having his diagnosis. Our hopes that we had have gone but we have new ones. Our child will most likely never be independent he will always need support to keep him safe.

The challenges are very hard though, i have had black eyes, bruises and broken toes from being hit or having things thrown at me. I’ve changed nappies for 8 years when most children are out of them by 3. I’ve replaced so many broken items we’ve stopped buying things because it’s more things to be ruined. We fear leaving our house incase there is a meltdown or he manages to escape our grasp and runs into traffic. I fear for my child’s life daily as he doesn’t understand the dangers around him.

I’ve gotten to the stage where I’ve been clinically depressed due to feeling trapped and isolated as a parent of a special needs child. When the diagnosis comes everyone around you tells you it will be ok and if you need anything they are there, that does all slip away. That once long list of people who would like to help gets down to 1/2 people and you truly feel like outsider’s in your own family.

I absolutely love and adore my son, he is who he is and he wouldn’t be him if he didn’t have autism. He’s funny, he’s smart, he has the most amazing photographic memory that to me is just brilliant. He has a way of surprising us especially when we go through bad patches as a family when we get to the stage that we don’t know how to cope he knows and shows us he can do something we never expected him to do. His milestones come late sometimes 6 years late and the magical feeling that comes with them is just amazing. His smile is also contagious it can light up a room and sometimes make it hard to tell him off.

This isn’t written to diminish who he is but to show that being a special needs parent can be hard. There’s not much support out there anywhere in the world.
I’ve found some comfort from some Facebook groups of parent in our situation and we all struggle with the same things. Yet we’re all told the same things my professionals that we need time for us to rest and to be able to have an identity other than mum/carer. It’s all well and good hearing a professional say it but in reality it’s just not going happen due to childcare.

My main wish for my eldest now is that he is happy and safe there’s no other expectations than that although I’d love if he could sleep more than 4-5 hours a night but that’s a working progress for now.

This is an example post, originally published as part of Blogging University. Enroll in one of our ten programs, and start your blog right.

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The post can be short or long, a personal intro to your life or a bloggy mission statement, a manifesto for the future or a simple outline of your the types of things you hope to publish.

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