By Emma Wellman
In July 2017 at a Health Visitor check for my son, Ryan, we became aware he was not meeting certain milestones for his age of two and a half years. We had been offered a course of sessions for an ‘Initial Assessment Group’ to find out why he wasn’t meeting certain criteria like other children his age.
Ryan is a very agile boy and is extremely physical with a lot of energy. He will run around and play on his own and then suddenly will flake out and sleep for a good few hours. He always plays alone and finds the company of other children quite annoying. He only finds certain toys interesting usually stacking cups, flashing balls, small disks, pendulum type objects, stickle bricks and bead maze toys. He never took any interest in make-believe play and spent very little time making eye contact with anybody, this became more apparent when calling his name and getting no response.
No attempts were made to say words like a typical 2 year old and Ryan pronounced very few nouns which was also a worrying sign that things weren't progressing the way they should be.
On the fourth session at the ‘Initial Assessment Group’, we were invited to come along and discuss Ryan’s difficulties and the professionals involved all sat together and decided to diagnose Ryan with Autism Spectrum Disorder.
Ryan also has extremely flexible joints, which is linked to his autism; this explained why he got so tired out after his huge energetic bursts. Since his diagnosis, he has had a lot of professional support surrounding his condition especially from the staff at Jumping Jellybeans Pre-school, the nursery he has attended since he was 2, who have been amazing!
My son cannot speak yet. He is currently having sessions with his Portage Pre-School Support Worker and speech & language therapy and we are currently teaching him objects of recognition with a view to moving onto PECS in time. Small steps are in place as to not overload Ryan with too much information. Ryan’s finding it hard to understand pictures so it might take longer to master PECS but we are practicing every day so hopefully we will get more and more pieces to fit in the ‘jigsaw’ in time but I will never give up!
He has not yet been potty trained either so that’s in the pipeline for the future.
He is learning new things all he time and I am noticing his awareness has improved a lot. When I got Ryan’s diagnosis I thought to myself, I could sit back and wallow in pity that my precious boy is different to other children, or I can go out there and make a difference and help, where I can, to make the future better for my son and other people like him.
I thought long and hard about what I could do to help and came up with the idea of sponsored silence, a ‘no communication’ fundraiser. My friend Agnieska decided she would do it alongside me which was really supportive and kind of her. We set a date during World Autism Awareness Week and I had some T-shirts made up by my good friends at SC Signs, who kindly donated them for free. We got sponsored by our employer, Alfatronix Ltd, and our friends and family donated online through https://uk.gofundme.com/silenceforautism
We raised £475 for our wonderful local charity Autism Wessex.
Being silent for a whole day was very hard. I am a huge talker and I spend a lot of time using social media so to cut all of this out of my life for a whole working day was very challenging and also very frustrating. There were times when we had to improvise when needing to communicate in ways that didn’t involve talking, we found ourselves wildly gesturing.
This exercise gave me a valuable insight into how a huge percentage of autistic people live their every day lives and how finding a means of communication for them is extremely important to alleviate frustration and meltdowns, also how intervention at a young age is vital.
I was so agitated by lunchtime that I had had enough! I felt huge sympathy for my son and how he must be feeling when he can’t express himself with words, ever!
Ryan has a love for water and often gets soaking wet whenever he can! He also thrives when bouncing on trampolines or bouncy castles so in order to relieve his frustrations I bought him a trampoline for the garden and he has one at my mums too. This always helps him. I find he doesn’t stim or become frustrated when he is bouncing, it is as if it is his release and where he is relaxed and happy.
Ryan has an infections random laugh which has everyone else in stitches with him. I would love to get inside his head and know what is making him laugh so much, it’s beautiful and so endearing to witness. He has a love of humming along to tunes he remembers and loves to sing. I am so impressed with him and we will keep up the PIEC –D (Promoting Early Interaction Conversation Sessions) to keep improving Ryan’s acceptance and willingness to invite us into his world so we can try and figure out what we can do to help him more and hopefully we will help more and more young children in the future.
Let’s get autism out there and make a difference!!
We have asked our guest bloggers for their opinions. This blog represents Emma’s own views.