The Back Story of Jay

 

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First day at new Special School Sept 2017

 

So, when did it all begin?

Jay as a baby, sweet, cute, babbling, like all children do, only giving tiny clues of the Autism within. Looking back I can see the signs were there. He would stare into space for minutes without focusing on anyone in particular. He would look intently at the sky, the blue reflecting in his gorgeous eyes and when I said his name he wouldn’t immediately turn to me. Most babies by 8 months will wave and clap, however Jay did not. He never waved, he just flapped. He flapped a lot, all the time! At first I truly believed it was just this sweet thing he did , a character trait. Little did I know this was actually one of the most significant Autism signs I was looking at as we now know he was in fact Stimming. Stimming can be anything from hand flapping to chewing or tapping and its always a repetitive movement. At this time I had no idea this was a red flag.

As Jay reached one he would learn words and then lose them! I was so confused as he would say them for a day or two, then I never heard them again. This “stalling” is also seen in children with Autism but of course I was still oblivious to this fact. However, by the time Jay hit two, I began to worry. Jay was non-verbal and still has limited language unless he is repeating things. I felt so alone as other mum’s toddlers were developing just fine, chatting and even being  social at the pre-school we went to, and I often felt completely alone then too. I would take jay to town and he would scream constantly and loudly and I never knew why! What was wrong? Why did he scream every time I took him into the local shops? Anywhere there were lights, noise or people would make him turn from a sweet quiet child to a screaming child that of course everyone stared at. Now, I don’t mind the staring if it isn’t judgemental but its taken 4 years to truly be able to cope with the stares and that is something only experience will ease.

Once jay hit three, he was already receiving one to one support at pre-school however, even at this stage the word Autism had never even crossed my mind. I suppose it was because I was a third timer with two other children and I just thought he would catch up. Now, we come to the defining Eureka moment! I will never forget this day. I was sitting in a café with my sister, when an old acquaintance came to say hi. I will not name her of course, however this lady gave me a gift, because she said something that some would say was blunt but I am eternally grateful to her for having had the guts to say it! Jay was standing on a sofa flapping his hands and arms and making noises. The lady said “he has Autistic qualities! I looked at her, I went quiet, then responded with ” oh do you think so?” Inside I was burning up, not with hurt but with something else! It was the moment I realised like a lightening bolt “That’s what it is! He has autism” I said these words inside only and from that moment I truly knew my son!

All that followed resulted in a very early diagnosis as I sought help soon after this day and by the age of 5 Jay had his diagnosis without any battle or barriers. Each doctor who saw him agreed he had Autism and passed him on through to Paediatrician to ASMPACT who are a multi professional diagnosis team through to Psychologists and Speech Therapists and Occupational Therapists. We saw them all and it was from that time our learning as a family started and my journey as Jay’s main Carer began.

To finish this post I will add, that the life of any Carer is incredibly hard and to be a Carer is also a privilege because you have complete control over another human being’s life and because of that I strive to be the best mum and Carer I can be to Jay! It can be a lonely life. Even when my family are at home, when Jay hits a Meltdown it is me he turns to, to help calm him and its me in that moment that feels the sadness that my child must endure the hardship of not feeling safe, because, that is how they feel when in meltdown, I know this because Jay has told me! So the reason I write this back story is so people will know that the journey we face is FOREVER, there is no end, even after we the carer are gone we must ensure the adult is still cared for and we can never be free of that future or should I say lack of peace of mind! I will end todays post on a happy note. For every meltdown and shutdown, for every moment of anxiety and sensory overload, there will be just as many special unique moments to counteract these challenging unhappy moments and so Autism can feel like we are riding a rollercoaster every single moment of our day and then we awake and we ride it again and again. Me? I prefer the ups as we all do but this blog will include both!!

4 thoughts on “The Back Story of Jay

  1. Thank you for sharing your journey. We just started ours. Arlo is 4.5 and we received his diagnosis in November, after waiting almost a year to go through the entire process. Reading your words made me tear up. But it also was comforting to know I’m not alone. Can’t wait to follow your blog. 🙂

    Liked by 1 person

    1. Hi ,that is so lovely to hear that I have reached someone in the same situation and this was my aim ! Arlo is a lovely name and it is funny but Jay loves the dinosaur character called Arlo from Disneys The Good Dinosuar movie so it seems like fate that you found us! If you are on facebook we could be friends if would like? Thank you for your lovely comments x

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  2. My 8 year old Granddaughter has autism this is very useful information and interesting. Look forward to reading more and your not alone x

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    1. Thank you and I really wanted to find other mums and family members and hopefully share some of our life and knowing we are not alone makes such a difference! x

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