What a journey *TRIGGER WARNING*

My son was overdue and unresponsive for 10 minutes when he was born. ‘A’ met all of his milestones from 0-3 according to the baby red book, ‘A’ was totally forward to having a sister 8 years older than him, there was nothing he didn’t know. Shapes, colours, objects and being able to count past 20 were his favourite things to do.

When ‘A’ turned 4 years old, he regressed, and his memory went blank. ‘A’ could not remember how to count 10 objects, out of the blue. It was really shocking to shocking to see it play out. Bearing in mind I just had a parent’s evening at the nursery school, who stated he was over and above his milestones, ‘A’ was doing very well, with nothing to worry about, I was totally confused.

I went to my GP and explained what had happened, he asked me to write him a mini report, which I did, and he accepted my report. The GP said that he wanted something from the school and his school was extremely reluctant. I fought and fought! In the end, I had to force their hand and they completed the necessary documents for the GP.

My GP accepted everything and made a referral to Kaleidoscope for my son to be assessed. In the UK, waiting lists are so long so I did lots of research and kept a log of our journey, no matter how small the detail. I wanted to be armed with all the tools so when the assessment did arrive, I had the fire in my belly to ensure nothing went unanswered or documented!

Due to the issues with the primary school, I already knew whatever the outcome was that they would not be supportive and needed to find somewhere which would support my son in all areas of development including his mental health and academic levels. It took me an entire year to move him to the school that was equipped.

‘A’ has no behavioural issues, so is the perfect black boy, who goes unnoticed. I have constantly been his advocate and mouthpiece to ensure all that he needs is available. Let’s face it, you don’t ask……you don’t get! the teachers did not understand how he was so good with special educational needs, this was not normal behaviour for a black male, so when he did complain, he was
told ‘that was impossible’ basically, in his eyes calling him a ‘liar’ for him to realise from year 2 he will not be telling them anything. He only has the confidence to confide in his mum, dad and sister which is sad. His words were ‘they don’t listen or believe me’. That is really tough to hear, knowing my child spends so much time at school, that should be a safe space! From thereon,
‘A’ did not inform the teachers of any issues he had.

The assessment finally rolled around. I was not sure what to expect but felt a sense of relief that we had made it up the waiting list. The person leading the assessment was puzzled as to why we had come because she said, ‘he gives me eye contact before she even spoke to him or started the assessment (I was gobsmacked).

In this same appointment ‘A’ stood behind me, looked out of the window, while answering her questions and not once addressed her, but yet because he looked at her that one time, there is nothing wrong with my son. I provided all the details I had been collecting and his medical history for reference.

In June 2021 ‘A’ received his diagnosis having started the process back in 2016! I have lost count of all the times him being extremely upset because of his difference. ‘A’ has gone through periods of wanting to die and hating himself because his first primary school put some children like himself who were told they were low ability, for this reason, he used to call himself ‘dumb’ for not getting his spellings right and for not remembering how to spell the word, he just learnt – this was one of the major reasons why I had to change him from his first primary school.

My one wish is that educators understand Autism is not one size fits all. Autism is a spectrum which is why everyone is different. I want my son to live a very full life to be the best that he can be, and I will strive forever to ensure that it happens.

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