I am very grateful to Becci at To Aufinity and Beyond for sharing Sonny’s story with us. Please do pop along and check out her beautiful blog and social media pages.
When did you first realise that your child had SEND/ a medical condition?
For me there was a gradual build up of events that took place, beginning when Sonny was only very small. There was one incident during a seaside trip to Walton-on-the-Naze, when Sonny was three years old. It suddenly dawned on us that Sonny had a lot of difficulties. I wrote about this in one of our most read blog posts, Autism | The Moment I knew.
I didn’t know what his difficulties were exactly but I knew something wasn’t right and that I had to seek help for him. Life with him up to that point was extremely difficult. I had an elder child, who I felt was missing out and a young baby who needed my love and care too. We couldn’t do anything or go anywhere in fear of the next meltdown and I was at a real low point in my life. I felt like it was my fault and that it had to be something I was doing wrong.
Then one day, a friend tagged me in a link on Facebook about SPD. Initially I assumed it was about Symphysis Pubis Dysfunction, a condition I suffered horrendously during my two latter pregnancies. The link turned out to be about Sensory Processing Disorder. I had never heard of it before and it was honestly like reading a detailed description of Sonny and his behaviours. It all made perfect sense! A penny dropped for me that day and from there, I began researching SPD and ASD and made an appointment with our GP for referral to Paediatrics. When we had our initial assessment, it became clear that Sonny was highly likely to have Autism and Hypermobility.
What were your biggest worries in those early days?
In the early days, my main concern was what this meant for Sonny and as us as a family. All I could see and hear was the word Autism and it took me a little time to see past the label and realise this was a fundamental aspect of my little boy’s personality. A personality like no one else I met and one I adored so very much. I was worried as we were approaching nursery age and I was certain Sonny would never cope in a mainstream school setting. At three, he was barely speaking and it broke my heart to picture him lost in a class of 30 children where his environment was painfully overwhelming and where nobody understood him.
Does you child have a formal diagnosis?
We are currently on the NHS waiting list for his formal diagnosis appointment. The list is said to be around 1 year long and we were placed on the list in April 2016. We were advised during our initial assessment, that it would not be difficult for Sonny to receive the diagnosis and that we should have a formal Autism diagnosis by April 2017. We are very nearly there!
What kind of support did/ does your child receive?
We are incredibly lucky to have our children attend one of the top public schools in our area. Despite not yet having a formal diagnosis they have already put a huge amount of provision in place for him. To begin with Sonny uses PECS at school and many other visual aids. He is met at the main school entrance where he is greeted by his support teacher each morning because the playground overwhelms him. He spends the first 15 minutes of the school day in the learning support classroom which gives his class enough time to settle in before he joins them. He has his own black out tent which he can go to when he is feeling overwhelmed. He has a 1:1 support teacher who supports him the whole duration he is in school. He has his own personalised and currently reduced timetable. He is not expected to sit and learn in the same style as the other children in his class and they have adapted his learning style to suit his needs. He has unlimited access to snacks and drink while at school and in all fairness he gets pretty spoilt! (Waffles on a Monday and Pizza Friday!) He has his own area in the classroom with a small desk and chair so he can learn with his 1:1 away from distractions if he needs to. This little area has his own display board and little bookshelf with his toys on.
Sonny has daily speech and language support at school. He uses the buggy board to and from journeys as he tires very easily due to hypermobility. He has ear defenders and his own tent at home. He sees a Chiropractor every 3 to 4 weeks for maintenance, having gone through a course of twice weekly and weekly adjustments to his pelvis and spine. This has had such a positive impact on the way in which he walks and holds himself.
What accomplishment of your child’s are you most proud of?
I am so very proud of how far Sonny has come. There are so many ways in which he has made me proud it’s hard to choose. If I had to choose one, it would be proving me wrong, showing me he can thrive in a mainstream school. It is amazing how a child can flourish when all their needs are met with the right support. His speech has come on tremendously, is learning to read and amazes me each and every day. We have a long road ahead of us but Sonny gives me the hope and energy I lacked before.
What do you know now that you wish you had known in the early days?
We are still very much in our early days while awaiting diagnosis. I wish I had known more about Autism. I feel perhaps I would have been able to spot the signs a lot earlier than I did. I started blogging just 5 months ago. I want to raise awareness and understanding for those with Autism and make the world for them a kinder place to be.
What advice would you have for a parent whose child has just received a new diagnosis?
You are not alone. I felt very much alone back then, and kept myself to myself. Reach out if you haven’t already. There is such a wonderful community out there, waiting to welcome you with open arms. Some are further along in their journey, others simply at the start of theirs. Take each day as it comes and be kind to yourself. You are doing an amazing job and even though it may not always feel like it, you are your child’s advocate and there is no one out there that could do it better than you can.