The daughter who taught me the meaning of loveFor three years, Lady Astor ignored all signs her little girl was autistic. When it was confirmed, she wept for a week. Now, as Olivia nears 21, she pays moving tribute to…
09:59 GMT, 18 October 2012
When I look back now to the early years of my second daughter’s life — wrapped up as I was in an impenetrable cocoon of joy — I realise I was being wilfully blind. I refused to concede that there was anything wrong with my little girl.
Olivia was small but, in my view, perfect. She fed and slept well. I would not let anyone or anything mar the unalloyed pleasure I felt at being a parent again at 42.
The signs, of course, were there, but stubbornly I ignored them. When I overheard a friend observe: ‘If that was my child, I’d take her straight to the doctor,’ I quelled the impulse to ask what she meant. Instead, I ran for the bathroom and tried to suppress my indignation and anxiety.
Lady Astor with Olivia as a baby: At first she refused to believe her daughter had autism even though the signs were there
But the remarks kept coming. Concerned friends commented that Olivia seemed ‘very young for her age’, when, aged one, she still failed to sit unaided and was incapable of engaging with anyone — even me.
/10/17/article-2219305-15888BC7000005DC-900_634x571.jpg” width=”634″ height=”571″ alt=”Never showed affection: It wasn't till she turned seven that Olivia told her mother she missed her when they had been apart” class=”blkBorder” />
Never showed affection: It wasn't till she turned seven that Olivia told her mother she missed her when they had been apart
I suppose, looking back, I was determined no setback would tarnish the idyll. My life with Johnnie was, after all, such a contrast to the unhappy one I’d endured as a divorcee living alone in my 30s with my first daughter in a flat in West Hampstead, working as a head-hunter.
Money had been a constant worry; the lonely weekends stretched out interminably. I’d been separated for seven years before I was introduced to Johnnie by our daughters, who were friends, and when we married I felt as if I’d stepped into a fairy tale.
Small wonder, then, that I did not want to acknowledge the truth about Olivia’s condition; even when our GP assessed her, aged three, and made her diagnosis of autism. I shudder to think how, in my ignorance, I resisted accepting the fact.
'She takes language literally, when she was younger we could never
comment that it was “raining cats and dogs”, because she would rush to
the window in the hope of seeing them fall from the sky'
Instead, I insisted the doctor record, ‘a speech and communication disorder with a moderate learning disability’, as I did not want to jeopardise Olivia’s chances of going to a mainstream school.
It was a further 18 months before I finally conceded that the doctor’s verdict was correct: and when I did so I wept inconsolably for a week.
Having done so, I picked myself up and resolved to learn everything I could about the monster that had stolen my child.
I attended conferences and seminars on autism; I read up on it exhaustively. I discovered, too, that there were traits of the condition on both sides of our families: it helped to assuage my guilt that I had contributed to Olivia’s condition by having her at 42, following a complicated pregnancy and delivery.
I learned, too, that the cause of autism remains a mystery; that there is no cure and that everyone who has it is different. So I started to monitor Olivia closely; I studied how she learnt; what strategies worked for her and which ones failed.
Above all I wanted desperately for her to love me, for she never showed me — or anyone else — a scintilla of affection.
Olivia aged 13: She thrived when she went to a school for children with special needs
Indeed, if I left her for a day, or even a week, she would not register a flicker of emotion on my return, much less rush to me squealing with delight and smothering me with kisses as my son had.
So I tried different methods of inducing some rapport. I’d lie on the floor, hugging her tenderly, telling her repeatedly that I loved her and asking: ‘Do you love mummy Do you’ until one glorious, miraculous day when she was seven, she responded.
She ran into the house after a day at her mainstream school and cried out, ‘Mummy, Mummy where are you I’ve missed you!’ but I could not see her for the tears of joy blurring my eyes.
Olivia spoke, and still does, in a soft mumble and gives us two — precisely two — chances to understand.
If we fail to do so she will give up because, like many others with autism, she quickly slips into sensory overload as she cannot tolerate too much visual, aural or physical stimulation. She is also dyspraxic; even now, at 20, she has poor physical co-ordination — she cannot even tie back her hair — and she is unable to write at all.
'One of the most poignant moments was
realising Olivia could not distinguish between her sisters'
Despite this, she can be wonderfully expressive. Like most people with autism, she takes language literally, but has learnt to love idioms and puns. When she was younger we could never comment that it was ‘raining cats and dogs’, because she would rush to the window in the hope of seeing them fall from the sky.
She can be disconcertingly frank, too, and when she was 14, and we interviewed a prospective helper, she looked at the young woman — who was so large her flesh spilled out over the sofa — and declared: ‘She’s very fat Mummy, isn’t she’ (The poor girl turned scarlet and I couldn’t deny it, because I knew by then that Olivia would only have responded with the incontrovertible truth that she was very fat.)
Each phase of life with an autistic child presents hurdles to overcome, and, after four disastrously unsuccessful years in mainstream schools — where Olivia neither fitted in academically nor socially — we were delighted when she was offered a place, aged nine, at the wonderful Broomhill Bank School, near Tunbridge Wells, for young people with special needs. There she thrived until she was 18.
Meanwhile, I threw myself into fund-raising for the National Autistic Society, became its vice patron and drew strength from a community that knew precisely and instantly the sort of problems we encountered daily.
But the demands Olivia placed on me during her childhood were relentless. For ten years I took her, weekly, to occupational, speech and language therapists to help her to walk, communicate and read. She consumed my thoughts and energies to such an extent that I worried about neglecting my son, my other dear daughter, my husband and three stepdaughters.
There were times when I divided myself into so many pieces I feared I would fragment and disintegrate.
Nearing her 21st birthday: Olivia is gaining in independence but will always need a carer
One night, while supervising Olivia’s bath, I sat on the loo seat and wept. She was only eight, but I was already 50, and I could foresee a future where I would still be sitting on the loo seat instructing her how to soap her body when she was 40 and I 82.
I felt as if I was lurching from one crisis to the next: no sooner had one problem been resolved than another arose. Often I felt exhausted and profoundly alone. Although friends and family were kind, they could not possibly grasp the scope and scale of the condition that engulfed us.
One of the most poignant moments was realising Olivia could not distinguish between her sisters. They have always looked similar, and it wasn’t until she was 13 that she began to be able to tell the difference between them. The fact that she could not tell one black spaniel from the other was immaterial; this devastated us.
Olivia’s vulnerability terrified us — and continues to do so. She is prone to disappearing and, six months ago, I lost her again in London’s Trafalgar Square.
She’d gone to the loo in the cafe where we were having lunch, and when she did not materialise I went to look for her in the ladies, but she wasn’t there. Panic rising, I dashed through thronging crowds across the traffic on the square, aware that Olivia has no sense of danger and cannot cross the road unaided. There was no sign of her.
Eventually, to my combined relief and horror, she emerged unscathed from the gents having failed to distinguish between the two different signs.
'I adore her just as she is and whenever poignant feelings creep up on me, I tell myself to be thankful'
So, every day, life presents a constant challenge, and before Olivia was due to leave school, the task of finding the perfect special needs college preoccupied me. I cannot overstate the scale of the task it presented — I had to find one that catered for her specific needs and also provided good quality care — but, eventually, I discovered the right place, Homefield College in Leicestershire.
She has been there a year now, and is thriving and, although we regret her distance from us, we know she is settled, safely and happily, with people of her own age and learning new skills.
Olivia is now able to shower and wash her hair. She dresses appropriately for the situation and weather, does her own laundry, cooks and cleans. She lives in a modern house, which she shares with four others. Weekly, she also attends IT classes and is learning to take public transport, closely shadowed by a carer. The feeling of independence this gives her is invaluable and delights her.
But what will the future hold In July 2013, she will leave college and our quest will begin afresh to find a happy and secure new home for her.
It may seem logical that she should return to us — but, actually, that would be disastrous. I am now 62; my husband is 66 and we know it would be cruel to leave Olivia unprepared and unprotected when we die. It would also negate the work her carers and teachers have done in helping her to live independently.
So, ideally, we would love to find her a home close to us, where she can live with friends like herself, have room for a carer and continue her semi-autonomous life continuing her education, getting work experience and having fun with her peer group. After all, it’s what all young people want, isn’t it
Olivia has progressed remarkably in the past few years. She is even able to express affection in her own, inimitable way.
Occasionally, when she is overcome with joy, she will hook her arm through mine and squeeze it tightly, nuzzling her face gently against my shoulder, smiling to herself. Then I will ask: ‘Are you having a lovely time, my angel’ she will nod, and my heart will almost burst with joy.
Like all young women of her age, she longs for a boyfriend. Four years ago, when offered a plate of fresh dates one lunch time, she announced: ‘I want to go on a date, not eat one!’ We all laughed with delight at this astonishing, yet entirely natural pronouncement.
But in many ways she remains innocent and child-like. She still adores all things Disney and her bedroom carpet is still covered with her ever-growing collection of beanie babies.
I have already planned her 21st birthday present next year. To her delight, I am taking on her a Disney cruise. Of course, it hurts sometimes to see her stranded in this perpetual world of make-believe. Olivia will never go to university, learn to drive, marry or have children of her own.
But I adore her just as she is and whenever poignant feelings creep up on me, I tell myself to be thankful. Olivia has taught us much about fortitude, patience, kindness. Actually, from her we have learned the true meaning of love.
Liz Astor’s debut novel, Since You Went Away, is available as an ebook (4.99) or paperback (7.99) from online retailers. Liz is donating 10p a copy to Parkinson’s UK, parkinsons.org.uk/supportnetworks). The National Autistic Society, autism.org.uk