Embracing the ‘A’ word

MY four-year-old boy is like a superhero – he can run like the wind, jump onto gravel without even flinching and navigate his bedroom floor covered in Thomas trains in the dark, not tripping over a single one.

We marvel at these traits, even more so now, since they can be associated with autism which Felix was diagnosed with recently.

Although deep down I suspected, I was still shocked when we were told the news. Felix is quirky and he can have the odd major meltdown but really? Autism? To me, the word sounds so ugly yet my son is so gorgeous. That was two months ago and, in case you hadn’t guessed, I’m emotional – mainly because he’s achieving so much. We’re treating the diagnosis as a badge of honour rather than a stigma.

It’s almost two years since we first asked for help – he wouldn’t settle at night, his speech was delayed but he would repeat lines from tv cartoons days later and would sometimes completely zone out.

Over that time we’ve met with lots of health professionals and some have been amazing (especially speech and language therapy) but at times I seriously regretted going down this route and berated myself for not waiting until he was older. I didn’t mind being asked if he self-harmed as I know this can be a factor, especially in sensory-seeking children like he is, but I was upset when I was told he “smiled inappropriately” and his reluctance to go to bed was due to him being “manipulative” and “had we thought about turning his door handle upside down so he couldn’t get out the room?”

While he was being assessed by different people I gave them all the information I could, rearranged work so I was available for every appointment yet got hardly any practical coping strategies in return. The health professionals wouldn’t/couldn’t comment on where they thought Felix was on the spectrum and we’ve just received a letter to say he has now been discharged. Oh.

There were a few nights when after too much wine I’d catch my eye in the bathroom mirror while brushing my teeth and the tears would silently flow. What was going to happen to my boy who flew into the world after just three pushes and had kept us on our toes ever since? Would he cope in a mainstream school? Would he get a job? Would he ever find love? My eyes filled even more when I thought of his wonderful older sister, Maisy, who is incredible with her little bro. Thank goodness he’ll always have her, I’ve often thought to myself.

Lucy with 11-minute old Felix who flew into the world 10 days overdue.

Lucy with 11-minute old Felix who flew into the world 10 days overdue.

Feeling so utterly helpless during the formal assessment process (which took 14 months in total for us) I tried to do some research to try and understand how my little man ticked. Why did he crave cold, crunchy foods like apples and carrots, why was he obsessed with stroking my earlobe like it was a comfort blanket and why did he have such a low pain threshold? A friend lent me a book called ‘The Out-of-Sync Child’ by Carol Stock Kranowitz which introduced me to the world of Sensory Processing Disorder and suddenly everything clicked. I realised that Felix is a sensory-seeker because he naturally doesn’t feel the same sensations as me, his dad or his sister did but there were things we could do to help such as get him a trampoline and give him a ‘sensory diet’ for the right amount of stimulation each day.

As much as felt I was ‘doing something’ it was all very amateurish yet we were told Felix wouldn’t be seen by an NHS Occupational Therapist for a tailor-made plan without an autism diagnosis 🙁
So although I don’t remember much of what happened in that meeting on November 18, I had the wherewithal to ask the paediatrician to make the referral – which hopefully will be the key to unlocking how we help him going forward.

Felix with big sister Maisy.

Felix with big sister Maisy.

It’s funny that at the same time as the bombshell was dropped onto our lives, Felix’s progress took massive strides. He’s always had lots of friends his own age and been very loving at home (he gives me an adorable compliment every day from “your hair looks lovely” to “that skirt is beautiful” 🙂 but it’s at primary school where he has really shone. He has settled into Reception and thrives on the daily routines which make him feel safe and boost his confidence.

He was a willing shepherd in the nativity and sang his heart out for two performances and regularly comes home with a sticker to say he is a ‘lunchtime superstar’ if he’s eaten all his dinner. He is learning to write and came home last night with his first reading books with words in as his fantastic teacher said he is doing so well. To hear him read to me was joyous and he was so proud of himself:) 🙂 🙂

Someone asked me last week if I’d grieved yet for the child I’d lost and I burst out laughing. Yes, it can still take two hours to get him to sleep and we have a big holiday to America coming up which we need to carefully prepare him for as we think he’s going to struggle with such big changes from his usual routines but we’re getting better and better at coping with that. Felix is accomplishing more than I ever dreamt of this time last year so I’ve quickly realised that there’s no point in worrying too much about what’s going to happen in future.

My husband and I have both stammered for as long as we can remember and had to cope with a fair amount of adversity over the years. I bet our parents worried about us like we do about our little boy and hey, we’ve turned out ok 😉

As with any young superhero, we haven’t seen all that Felix is capable of yet but we’re looking forward to the adventure – at four he’s already flying.

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2 Comments

  1. Very touching and very honest story! Thanks for sharing! It is SO important to know that our children with any condition can progress and achieve their maximum potential in life! And parents are ONLY force behind it! Best wishes for your lovely family and gorgeous Felix. Irina

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    1. Thank you Irina, it felt very good to write and the response has been overwhelming! Lucy X

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