A year on
On Wednesday I cried tears of joy.
I gave the kids some grapes to eat with their dinner and Ezekiel stood up, gave me a bad grape and said “Il put it in the bin”. I immediately felt a lump in my throat as the warm salty tears streamed down my face. My baby said a full sentence.
You might be wondering why this is a big deal, but for me this means EVERYTHING. This time last year on the 24th June 2021 we received a diagnosis of autism for Ezekiel and at the time he was non verbal. A year on and he just said a full sentence, that was relevant to the situation and I can’t tell you how much this has brought me joy.
Speech and language
We have had two “rounds” of speech and language from the NHS, the first time was when he was two and that was what essentially started off the diagnosis period. The second time was last year. I had to self refer because I wasn’t seeing any progress in his speech. As you all know, waiting times are ridiculous and when you get the sessions you can feel almost underwhelmed because you expect so much after waiting for so long and you just want to get your child speaking.
I felt the second round of speech and language wasn’t all that helpful at first because it was just x3 short sessions, and a review of the previous sessions he had almost two years prior. One thing the therapist did suggest was to try Makaton. Makaton is designed to help people with learning or communication difficulties. It uses signs and symbols, with speech, in spoken word order. For those of you who watch CBeebies you will know that Makaton is what Mr Tumble uses in his show and we were so lucky that at that time Ezekiel was obsessed with mr tumble.
Because we had an advantage that Ez already liked Mr Tumble I used the opportunity to teach Ez the basic signs he would need around the home to communicate his needs and it worked! At first he just used the signs and slowly but surely he started repeating the words associated with the sign like “water” and “help”.
At the moment his speech is largely a lot of repeating phrases and words and you can’t have a conversation with him just yet but wow what a change this is from last year when he was saying nothing.
Occupational therapy
When he got the diagnosis we were put on the waiting list for occupational therapy and we waited 10 months to finally get him assessed. Occupational therapy aims to improve your ability to do everyday tasks if you're having difficulties.
I was gutted and angry when they said Ezekiel didn’t meet the threshold to have occupational therapy. He needs help with everyday life skills, he isn’t potty trained due to sensory issues and his tantrums are bad when they are bad. They knew all of this but still told us he didn’t any OT input and sent us home with some leaflets and a follow up report.
This frustrated me because I felt stuck. We waited almost a year for something he doesn’t “qualify” for and I can’t afford to go private - so what do I do?
EHCP
We started the process for his educational health and care plan (EHCP) in January. An EHC plan is a legally-binding document outlining a child’s special educational, health, and social care needs. The plan has to list all of the child’s special educational needs and the provision to meet each of the needs.
We had just moved house and it was a bit of a nightmare just figuring who everyone was in the borough. We got there in the end though and after months and months, report after report and meeting after meeting he was finally accepted for an EHCP.
When we first got the draft version back it was trash and full of flowery, airy fairy language. To the eye of someone who might not know their rights or what they are entitled to it might have looked fine but I took one look at it and knew they were trying it. The language is supposed to be detailed and specific in an EHCP, especially in section F that details exactly what support should be given but there were statements in there like “Ezekiel should receive 1-1 support throughout the day”. 1-1 support by who? For how long? Be specific!!!
We are still waiting on the final version but at least I know he will get appropriate support in primary school as I fought for him to get a full time 1-1. I also asked them to add in an outcome for a smooth translation into primary school as it will be a huge change to his normal routine.
Daily life
Over the past year I have adapted my home to be suitable for Ezekiel and his needs. Check out the link to an IG post I did about this a few months ago here. I feel more in tune with what he needs and his communication has been so much better over time with adding in visual aids and some of my Learning with Ez resources, namely the emotions cards to help him talk through and navigate how he might be feeling.
I’m not a speech and language therapist or an occupational therapist but I am an expert in my child. Being able to read many books (check out my recommendations here) and speak to parents of autistic children in my online community has made the world of a difference to where I was last year.
I panicked and fell into a deep depression after I found out out Ezekiel’s diagnosis because I didn’t know much about autism but on the other side of that, with a lot of education and a lot more patience I am confident that I’m getting the hang of it all now. We are in a good place, Ezekiel has shown so much progress and I’m praying that when he starts school in September he will continue to flourish.
