By Lynsey Hughes | Published on January 21, 2021 | 8 Minute Read

I’m a proud Mum of Sidney who is 4 and was diagnosed with Autism only this year.

Looking back, Sid started to show delays from about 6 months onwards. He never pointed at anything and when you put him in his baby walker, he didn’t know what to do. At baby sensory, he would lie looking at all the colors and lights but never engaged with the toys or the other babies.

From about 18 months, Sid started to do what we now know as ‘stimming’. He would excessively post items all around the room at home and at nursery, he would run backwards and forwards over and over and throw things in the air. His Dad, Daniel and I also noticed he wouldn’t follow a basic instruction and would repeat a lot of what we said. Just before he turned 2, the nursery flagged to us about his obsessive posting and how he would get upset if items were moved around. We were asked to go in and the nursery manager said then that she thought he was displaying signs of Autism. I must admit it floored me.

Cue lots of intervention…

The hearing tests, the SENCO’s and the Speech and Language therapists all came forward and slowly we started to build a picture of what Sid could and couldn’t understand. A lot of it was around language and his understanding of it, but some of his behaviors said more.

We were fortunate at the start of 2020 to be referred by the Early Years Forum to a 6-week discovery group hosted by several professionals. For 6 weeks, Sid was observed alongside 6 other boys who all had similar or more complex issues than him. This was the first time that his Dad and I were able to sit in a room with other parents like us. It felt like people finally understood. Like a small weight had been lifted.

Usually, children are diagnosed with Autism at the end of this course, but the Pediatrician wanted to explore his language issues more and suggested we got private speech therapy. It wasn’t the outcome we expected, but it did put us on the pathway to getting an Educational Health and Care Plan and Disability Living Allowance for Sidney.

Then a global pandemic hit

Shortly after the discovery group, we sourced a private SALT who could also diagnose Autism. Our pathway had begun. Then everything stopped and we found ourselves at home with no support for 3 months. Sidney became anxious, had extreme meltdowns and all our efforts with toileting regressed. We knew then that he had more than a language disorder. Thankfully, over the Summer when it was safe to do so, the therapist visited us again and confirmed Sidney had Autism Spectrum Disorder. Even though we knew it was coming, to see it on paper really floored us.

Finding support

Being a send parent can feel incredibly lonely especially when you see so many of your friend’s little ones breezing through milestones. At the start of lockdown in March, I set up an Instagram page @the_send_life_. I felt like we needed to try and document our journey, to learn more, to feel hope and to install that fire in us that I know we are always going to need to get Sid the correct support. Connecting with thousands of other SEND families has been amazing and the support and words of encouragement has been a brilliant tonic. Most importantly, we are learning every day, we now do daily visual boards, we say no more to outings or visits that we think will overwhelm Sid and we keep a careful watch on his triggers. I know there is so much to face in the future, and I feel it already as he goes into mainstream education. I always want him to be treated with the kindness and inclusion that he deserves, and my hope is that he will grow to have a big level of independence. Having no more children has been a tough decision, but it’s felt right for us and soon we are getting a therapy dog to be a companion to Sid.

I didn’t set out to be a special needs parent, but Sidney has taught me to be brave, to have hope and to never give up. I wouldn’t change him for the world.

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