Six Years As An Autism Mum

My son, Sam is 7 and a half now. He was officially diagnosed with “Low functioning Autism” in 2014, but we noticed he wasn’t hitting his milestones when he was 18 months old. He had his first paediatrician appointment 6 years ago next week. It was during that appointment that I expressed my Autism concerns, and the paediatrician set about getting Sam diagnosed.

Year One As An Autism Mum

To begin with. Most people didn’t take my concerns seriously, and I felt like a paranoid mum. Thankfully for me, my husband and one of my sisters agreed that Sam wasn’t where his younger sister was. (My daughter was born 12 months after my son, and she was already doing things Sam wasn’t).

 

The first year was all about getting Sam diagnosed, and getting other people to take my concerns seriously. My mum in particular was dismissive of my worries. She was convinced Sam was just a “typical lazy boy” – her words, not mine.

 

Sam was sleeping well, not speaking and not walking or trying to walk at 20 months old. He didn’t walk until he was 22 months old, and even then he didn’t do it often. Sam was much happier sat in his buggy or running around on his knees.

 

Officially Becoming An Autism Mum

Sam was diagnosed with, “low functioning Autism”, PICA and Sensory Processing Disorder at 33 months old. He was diagnosed as hypermobile not long after that, too. Once Sam had his Autism diagnosis, and I was officially an, “Autism Mum”, I felt both relief and sadness. I was relieved that I wasn’t imagining everything, and sad that Sam would have to face challenges his entire life.

 

The first challenge was finding him a suitable school place. It took me well over a year, and one massive fight to make sure Sam was in the right setting. (you can find those posts here if you’d like to read them).

 

I published this youtube video talking about Sam’s Autism diagnosis. Feel free to watch it. (or not).

 

 

Sam was 4 and a half before he started school, but once he was in full time, we definitely turned a corner.

Aggressive Behaviour

Sam’s always expressed his feeling and emotions physically. Whether happy or frustrated, he will grab the person closest to him. As he’s got bigger, this has become more of an issue. We had to get social services involved during Summer 2017, when Sam became even more aggressive, and repeatedly targeted his younger sister, Syd. There’s nothing more heartbreaking than notifying social services that your own child is at risk.

 

Thankfully, we were given overnight respite for Sam soon afterwards, which meant Syd got some much needed 1-1 time with her parents, and we all got some much needed sleep. Our daughter also received support from Young Carers, who gave her lots of support to process why Sam lashes out, and how she can help.

 

Syd definitely understands Sam more now, and their relationship is amazing. She looks after him and understands him in ways I never will. They have a wonderful bond, that’s for sure!

Where we are now

I could write an actual book, discussing my Autism Mum journey, but I won’t. (Not today, at least). Sam’s understanding has improved massively this past year, and as a result, his aggression has reduced a fair bit. He still has plenty of meltdowns, but at least he doesn’t direct his anger at others as much now.

 

Sam is still non verbal, wears pull ups, and needs constant supervision as he has no danger awareness. He eats stuff he shouldn’t, and refuses to eat stuff he should. Sam loves hugs, kisses and tickling – he needs a lot of physical activity, sensory – wise.

 

That’s just about it for now. Massive thanks to Emma for letting us guest post. If you’d like to keep up with our adventures, you can find me here….

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