Love Is Not Enough – says the mother of an autistic child

Its been a long time since I read something beautiful and this was one story that moved me within. Jenny Lexhed is a mother of an autistic child and has written her parenting story – a gist of which was published in Reader’s Digest mag, a while ago.

“Love is not enough” is a real life story of tribulations and jubilations of a devoted mother who fights (and is still fighting) all odds to give her autistic child, Lucas, and herself a chance. It is a story that I could not leave unread. Each page and phrase urged me to read on, only to have my soul stirred and heart warmed.

When Lucas was born – she called him a miracle – just like any other parent would. As she kissed him, she wished if there was a way to capture her newborns scent in a jar for eternity. When Lucas was 2, she started to observe that her child was different. Like any mother she kept hushing her fears, while being watchful of her child’s development.

Her story begins with the birth of her child, discovering that he is autistic, surviving the many blows, to raising the child with all the love, faith and perseverance he needs. Jenny takes us through her life, her attempts, her frustrations, disappointments, realizations, confrontations, visits to the doctors, her seeming messages from beyond, and all that is hopeful in a matter of 4-5 pages of her story.

“Hope never abandons you; you abandon it”
George Weinberg

As a student and out of interest, I read about Autism. No Wikis, Mercks or medical textbooks had the power or connect to make me understand what autism is all about. To understand autism, I needed Jenny Lexhed – her thoughts, emotions, fears, expression, confessions and more.

She is no star or symbol of women courage. She is me. She is you. In her story, she made me go through the pain of discovering the fact that my child was autistic, that I survived the shock, pain and surrender to the divine will, to find my inner strength and courage to stand up once again, and to keep all my senses open to perceive whatever little that comes my way.

“Hope is only the love of life”
Henri-Frédéric Amiel

Living with an autistic child is like living with a life full of surprises. Any normal child will grow according to the developmental milestones. But here, there are no charts, graph, cards and sheets to compare with. A simple small word or gesture can make the parent soar. That joy is beyond our comprehensive limits. You have to live it to know it. Jenny is just-any-other woman but makes us live her life for a while. I continually ask myself – what if I had a child like that. Would I cry or try?

Attitude towards Autism in India
In India, having an autistic child is still deemed a curse. Specially-abled kids are regarded as mentally retarded children who need to be isolated in “special sections”. We have not been able to break through the stigma of having an autistic child. Not to mention the pain and trauma the parents go through to raise their loved child. People are still insensitive to specially-abled children. Autism is treated as a disorder, rather than a medical condition. Parents of normal children do not like their wards to mingle with autistic/ specially-abled kids. I wonder what Jenny’s trials and tribulations would have been like if she were an Indian, living in India.

I am not aware to what extent things/perceptions/ attitudes are changing in India. Taare Zameen Par was the closest we got to sensitizing our masses to dyslexia. Point taken, easily ignored by choice. It is a reality we don’t want to face.

Living with two physically handicapped loved-ones at different points in life made me wonder about the handiwork of God. I never got direct answers but learnt that we normal and able people are the ones who are handicapped – in our minds. And that we will never be able to see the world as purely and beautifully as they would.

Unlike our clouded-maya-existence of rat race and daily grind, autism shows what is means to live pure. In autism, there is endless attempts and repetition for perfection. That’s what they understand. They follow the call of their DNA. Perhaps they are a vital link into the unknown secrets of deep within and universe far beyond. They are merely answering in a behavior pattern we don’t understand. They behave in ways we cannot relate to. They perceive things in a way we cannot comprehend. They communicate with things we cannot. Now, who is handicapped?

“What seems to us as bitter trials are often blessings in disguise”
Oscar Wilde

There must be a great reason why God sent these special souls to Earth. Call it karma or kismet, Jenny Lexhed, somehow seems to convey that – without a mention. As you live her life through her words, there is a settling feeling of having found some answers to the questions we never asked but kept the quest within.

When you have put down the book – you continue her thoughts in yours.

And perhaps it is a gift of God to be blessed with and to raise an autistic child. That there are endless moments of thankfulness and gratitude – for a child so special and specially abled.

In solemn moments, I wonder what it means to be born normally and live this normally. There must be a reason why we are so ‘normal’ and done to death? Is this a test in which we all, as humanity, are failing at?

Those who wish to sing always find a song.
Author Unknown

Please click here to read the condensed story of her life that I read, read and read.

 This story is just not for mothers of autistic children… it’s a story for every mother, every human being. And Im glad Readers Digest continues to spring surprises some times. To read the condensed story, grab a copy of Reader Digest – India, June 2010 and for her book, Love will not be enough – a mothers fight for her son (Swedish Title: Det räcker inte med kärlek – En mammas kamp för sin son) published by Wahlstrom & Widstrand, Sweden, from her website

Love is not consolation.  It is light.
Friedrich Nietzsche