“We can confirm that you son has autism…” came the words from the assessment team as they looked at me pensively, awaiting my dramatic/emotional response.
I thought for a minute, wondering if perhaps I should be upset.
My mouth opened: “Phew!” I replied, feeling nothing but total relief. I was relieved that I knew my son and his behaviours well enough to understand that he was a little different to his peers, and I was relieved that we now had a professional diagnosis, it would enable us to ask for the help and support that he desperately needed if he was to return to school.
The professionals all looked rather stunned, but then smiled and they too breathed a sigh of relief. I’m sure that they witness a huge range of responses from the adults sitting in that chair every day. They talked me through their analysis of all of my son’s test results and everything made total sense to me. The anxiety, the way that he struggles in large groups of people, the way that he seems to be in his own little world and even the fact that he still struggles to use cutlery at mealtimes, preferring to eat with his hands whenever he can.
It also reassured me that our decision to remove our extremely anxious child from mainstream education, in favour of home education for a time, was absolutely the right decision for us all. It enabled us the opportunity to step back from all of the opinions and the pressures of what others considered that he “should” be doing, and gave us space to find new ways forward.
Parenting a child who has autism, for me, is a fascinating experience in ways that I had never expected. Although parenting all three of my children is equally challenging and rewarding, there are things about my son and his autism which make our relationship that little bit different. Here are a few of those differences:
Affection:
There is less physical affection between my son and I. He is much less cuddly and tactile than his siblings and if he does come to me for a hug it can be quite awkward for him, he will sometimes reverse towards me! But that’s ok, we connect in other ways, through the use of humour, through our love of learning, through our work on this website and through our daily routines where we say “love you,” at bedtime and pat each other on the head – that’s us.
Sleep:
Oh my life - Sleep! What I can’t tell you about surviving sleep deprivation, is not worth knowing! My son did not once sleep through the night until he was five and a half, and I don’t mean he woke up once for a drink - he woke up every single night between 5 and 15 times and yet he was NEVER tired… I however, was dead on my feet… and then I had two more babies!
I would like to add that now, with him approaching his teenage years, he sleeps much better, provided that he is not anxious about anything, if he is, sleep is still the first thing to be disrupted.
Early Years Development:
From what I can remember of our sleep deprived early years, my son seemed to excel in some areas of development and yet completely miss others. For example; he never learned to crawl, and I am still not sure he has mastered the coordination to crawl even at 11 years old - he simply got up and walked at 11 months old and spent a good two years falling over and bumping his head.
However, his vocabulary and spoken language were way beyond his years and by the time he got to three years old he could explain the inner workings of a steam engine in great detail. He could also paint, draw, build and engage in imaginary play by himself.
Food and eating:
Along with sleep, food has been the bane of our lives. There are fussy eaters, and then there is my son. There are some days when I just want to cry when dinner time comes around - if I let him, he would live off pasta with tinned tomatoes, pizza, chips and ice cream. That is it, and he only eats that when I’ve reminded him fifty million times to eat!!
It was partly because of his issues with food that we started out dig for victory garden. This is my attempt to engage my son with both the process of growing and cooking his own food, whilst also encouraging him to try new foods, tastes and textures. Linking it to WW2 has cemented his love and enjoyment of our rations week and it’s now something very special to us that we do every summer. There are lots of posts about this on here.
A thirst for knowledge:
Sometime referred to as obsessions, I like to think of my son’s interests as learning opportunities for both him and me. (Of course I do, I’m a teacher!) As a young child he was utterly obsessed with Thomas the Tank Engine and we would spend hours and hours “playing trains,” watching Thomas, reading Thomas, dressing up as Thomas and making Nanny be the Fat Controller, because she did the voice the best! He knew every train and every number, from Thomas, number 1 engine, to Diesel 199. I even used the Thomas trains to help him learn his numbers.
By the age of three and a half, he knew all of the inner workings of Victorian steam engines and loved watching engineers talking about steam powered machinery and engineering. As he grew older, this moved on to military vehicles and engineering as well as the history of WW1 and WW2.
I cannot tell you how much my knowledge of history has grown in the past five years, and what’s even more special about that is that he has taught me and I have loved every single minute.
We continue to share all of our learning experiences together, and many of these we add to The Do Try This at Home School’s social media pages for other families to try at home. I am extremely proud of my son and all of the things he is achieving. I love the way that he thinks and the different perspective that he has on the world around him, I find it really inspiring.
Of course I worry about him, I’m his mum. I worry about the teenage years, starting secondary school, relationships, his mental health and anxiety - which are already difficult for him at times and I worry that others will find him difficult to understand. But I’m not sure that’s exclusive to parents of children with autism… He has lots of friends and he is doing just fine!
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The post was originally published on 5th April 2019 on our old website.