This week is the National Autistic Society’s ‘World Autism Awareness Week’, and in aid of raising awareness for such an important cause our Blogger Friend Clare Lee has written a post for our blog, discussing her own experience with her Son’s Autism diagnoses.
Welcome to the World…
My little lad was born on the 28th of March 2013, ironically during ‘Autism Awareness week’. Besides the long labour, Riley being tongue tied, jaundice and the pink marks that appeared in various places on his body, my little boy was ‘normal’ – whatever that means…
Riley was late reaching most of his milestones, and as a first time Mum, I didn’t really have a clue what I was doing wrong.
Of course, having Riley changed my life, I was completely in love with him but had no idea how draining being a Mum could be! I was snap happy, constantly taking photos and videos of him growing up, I am so grateful that I am able to watch back on all of his special first moments, that can easily be forgotten about when you’re busy in everyday life.
Things Started to Change…
It was after Riley’s last set of injections, between 15-18 months I saw a change in his behaviour, almost overnight. My lovely little boy started to become very difficult, he avoided eye contact, became very clumsy, wouldn’t listen, would take himself off somewhere quiet and showed no interest in socialising with anyone or anything.
Like I mentioned, this was my first time as a Mum and I wasn’t sure what was right and what wasn’t… I just had a gut wrenching feeling that I needed to pursue help. I took Riley to the doctors, what felt like twice a week with various issues, but as he was under two there was very little the Doctors could do to help. It was infuriating, I felt like I was banging my head against a wall. I know we are always told we shouldn’t compare our children but I could clearly see my little Prince was developing far slower than other children his age.
I was persistent and on the 12th June 2015 my little Riley was diagnosed severely autistic with global development
delay and sensory processing disorder (ASD – Autistic Spectrum Disorder).
Always follow your heart, because nobody knows your child better that you. If that means you feel you need a second, third or even fourth opinion, always try and get it. If I hadn’t been persistent in trying to get to the bottom of what was happening with Riley, we would have found out far later and he wouldn’t have received the developmental care he needed as soon as he did.
Receiving Riley’s diagnosis broke my heart, I felt useless and guilty that I couldn’t take the Autism away from him, so he could lead a ‘normal’ life. However, at the same time, a small weight had been lifted from my shoulders because finally, I understood why my son was acting in certain ways that were different from other children the same age, and it wasn’t my fault.
Moving Forward And Progress…
I started to receive call after call from various professionals to arrange therapy with my son, speech and language,
portage, paediatrician, occupational therapist etc. I felt like we were finally getting somewhere and my little boy would be getting the attention that he so desperately required. These professionals carry a huge workload and therefore a lot of parents don’t receive the support they need, while it is easy to get cross at this, I took it upon myself to read every book and article on Autism so that I could help – remember knowledge is always key!
Riley has the common Autistic traits, flapping like a bird when he gets excited and walking on tip toes, lining up toys, lack of social skills including with his younger sister and a complete absence of any danger awareness. Riley has just turned 4-years-old and is non-verbal and buggy-bound when we go out. Although he can walk independently in the house he will almost certainly throw himself on the floor refusing to hold hands if he can’t go his own way and look at what he wants.
When talking to Riley, it’s as though I’m speaking in a completely different language, due to Autism being a neurological condition he simply cannot understand. Many parents, when they see us out might believe that Riley is naughty, lazy or ignorant when he doesn’t listen to the instructions I am giving, but unfortunately, my little man is just wired differently to many of us.
Riley is doing amazingly well, we are proud of him every single day. He’s the most loving and kind little boy imaginable and he really is as good as gold. Developmentally he is aged around 1 years of age but height wise he is averaging aged 5-6 size.
Milestones are such a huge ordeal for our family now and although Riley’s progression is slow we are incredibly overjoyed with every miraculous milestone overturned.
Associating words with pictures and symbols has been proven to help a child with Autism grow an understanding of the world around them and to communicate. Using visual timetables and a step by step guide can help an autistic child to understand the current situation, what’s coming up next or what is expected of them.
At the moment I’m taking pictures of everything with my camera and printing them out to label up as much as I can around the house to help Riley. This is the stage Riley and I are currently at, but for his next developmental stage, there is a programme you can buy called PECS (Picture Exchange Communication System) which are picture symbols you can aid with words.
My advice for other Mums in my position is to be happy and live life savouring every precious moment with your children, and however hard it can be, try not to compare your child to others. And remember, as Mother Gothal said in Tangled ‘Mother knows best!’ so always follow your gut when it comes to your little one.
Aside from the NHS, there are many other ways to gain knowledge, support and even socialise with other parents who are in the same/ similar boat. The National Autistic Society, SEN (Special Education Needs) Facebook groups, family fund, and much more. Check online for support groups in your area, the help is out there for you.
Everything I have written is from the heart and purely based on my own experiences. – Clare Lee