Since this series began I've featured several Mums of young children diagnosed with some form of autism. Today Justine Bailey, from the North West of England, is going to tell us about life with her teenage son, Robert, who has high functioning autism and ADHD.
|The Three Musketeers|
I have glimmers of happy times but they are few and far between. I remember the night we left my father really clearly; creeping out in the middle of a cold night, me, mum and baby sister. We walked and walked, and the only bit I remember with any clarity is walking along the sea front. I believe we were heading for the train station. A taxi driver pulled over to make sure we were OK. I’m sure it must have been an unusual sight in the dead of night, a woman, a toddler, a babe in arms and a suitcase.
|Gran, Great-Gran and me|
What was your first job after leaving school?
I remember watching the 80’s Diane Keaton film ‘Baby Boom’ and thinking I quite like the idea of being a ‘go-getter’ in the business world. I spent the rest of my working life doing just that; working up the administration management ladder. The fact I now use this in a voluntary capacity is fabulous, I get so much more pleasure from doing it for free!
I met my husband Jonathan through his friend, who just happened to be a colleague at the freight forwarding company I worked for.
|He's mine. All mine....|
I was trying desperately to re-invent myself. Why then did I agree to a blind date? Fate only knows!
|Our wedding day|
You have a son and a daughter?
She is fantastic at photography, and I claim that side of her personality comes from me! When she was younger, we used to go out shopping and ‘do brunch’ in Selfridges. I suppose I wanted her to experience everything I hadn’t as a child so to some degree she was indulged. When her brother came along we did carry on doing those things it was really important for her we had that time together. Regrettably this did change though when it became clear that Robert was struggling. He seemed to take so much of my time and she was becoming an independent teen those days were far and few between.
She treats him in the same way any neuro-typical sibling relationship would be. She doesn't see his autism as him being different just a quirkism that makes him Robert.
When did you start to be concerned about Robert's development?
It all started with little things first, baby asthma, baby eczema and an allergy to cow’s milk... he then started to struggle developmentally with his speech. I was still working while all this was happening and the guilt was unbearable. A lovely SLT decided that at 26 months Robert wasn’t really that far behind his peers in speech and that it was probably because he was a boy and lazy! Never mind the fact he couldn’t ask for even the basics like juice or biscuit, and the words Mum and Dad didn’t seem to have an ending. The only reason he could say ASDA was because of repetition and he loved the advert. Move on 12 months and I’ve given up work and Robert is in mainstream nursery having been placed by them on their SEN list within his first 6 months! This was the start of a very long journey for us.
What age was Robert diagnosed with Asperger's?
By the time Robert was six we had an Asperger’s diagnosis with a specific learning difficulty – Dyslexia and by the time he was nine we had added ADHD to the list.
It wasn’t until we found out about our son’s autism diagnosis that I realised Johnathan could be in that camp too! It answered so many questions within our relationship; how he dealt with social interaction and so many other awkward situations, his obsession with having enough money and not being in any kind of debt, which could be completely irrational sometimes. Other people just couldn’t understand why we were still together! I knew somewhere there would be answers which I found when Autism came crashing headlong into our lives.
Food fads in teenagers are bad enough but around your dinner table they're slightly more challenging, aren't they?
Food and the art of eating it has always been a contentious issue in our house, long before the children came along. Before I had my epiphany about my hubby and his undiagnosed Asperger's, I used to think his attitude about food was incredibly unreasonable at times, spoilt, snooty and downright stubborn and when I presented him with a home cooked spaghetti bolognese and he would only eat the bol, I really did become quite paranoid. He would claim that the pasta was like eating slugs all slimy and I often thought this was quite simply an exaggeration. So many times he used to remove himself from the dining table because the noise of crunchy carrots was like someone running nails down blackboard, or the over dramatic outbursts at the prospect of crisp packet rustlings whilst watching films. The rigidity and inability to compromise was so frustrating to me and a dispute would go on for days. I had been brought up with the attitude you eat whatever was put on your plate or go hungry! I wasn't very sympathetic! That was until I had children!
In my quest for SEN knowledge and a keen interest in meeting other parents locally, I joined the Parents Forum three years ago. Initially, I went along just to find out what was going on in our local authority as most of you are familiar with local authorities REALLY don't like SEN parents getting to know too much! Crikey, if we knew too much we might see more clearly their short comings! Through the meetings I became aware that I did have more to contribute than I first thought. I'd spent years trapped in this emotional bubble, and trying to find that even keel, trying desperately to balance that see-saw of our life, that I lost sight of who I was and who I had worked hard to be. What I found confusing too was the 'who I had worked hard to be' because realising that who you want to be is an ever evolving situation can be unnerving, a little bit scary and I was treading uncharted territory. Could I possibly have anything to give or share? Do you know, and I can say this now, YES I DO!
1. Had I anything relevant to say?
2. That I would be heard.
Stepping over that line came as a bit of a shock to me. I'd had a really crappy week with Robert's anxiety and was truly fed up with the attitude of some people, so when asked whether parents might engage with a new process I just let rip! Not in a nowty way, or angry outburst kind of way... I merely pointed out quite honestly and calmly the impact of continual assessments, the tiresomeness of repeating your child's history to half a dozen practitioners and the endless filling out of forms, etc, etc.
So now I just love these sessions at the local parents forum. They get you fired up, enthused and above all made me realise that goals are attainable...
Oh, and did I mention that three weeks ago I was voted Chair Person? And to think I started off as a wall flower....
Justine, thanks so much for sharing your story. I'd like to finish with your two blog posts. After I read them the words school and egg shells sprang to mind. It must be horrendous for parents who have other children going off to school in the mornings and have to spread themselves so thin. There are so many school-refusal kids, it seems like a nightmare scenario, always having to be one step ahead to prevent anxiety and meltdowns. I expect many of them will relate to this...
"It's all you and Dad's fault I have this autism and ADHD. You're the ones who have given me this cell. ADHD won't let my brain calm down" and "Autism and ADHD stop me from fighting my own battles".....and we went on, and on, and on...
|Click click click on his ipad on one of our many drives|
My word Robert has started his journey into transition..
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