Living with Max

by Sandy Lewis

Sandy Lewis describes having a child with Down's Syndrome as both the best and the worst thing that ever happened to her. Like all parents, the birth of her son changed her life in miraculous ways, but Max's condition has presented her with a series of additional challenges and anxieties.

In Living with Max, Sandy takes us on a remarkable and inspiring journey, from Max's birth to his extraordinary film debut as one of the stars in the hit film Notes on a Scandal. With unflinching honesty, unaffected humour and not a shred of self-pity, Sandy chronicles the highs and lows of bringing up Max: his amazing ability to light up a room with his smile; his energetic exuberance and love of life; together with the struggles she has faced in raising her son in a world that is clearly not as politically correct as we would like to think.

As well as offering a humorous and enlightening insight into the world of a family living with Down's Syndrome, this is a wonderfully moving story of a mother's courage and tenacity, and of a little boy you can't fail to love.

258 pages, Paperback

First published May 1, 2008

Reviews

[Louise Ashdown · Rating 4 out of 5]

This book left me with mixed emotions.

I felt sorry for Max's Mum and the ignorance she experienced after the birth of Max. People can be so cruel. I'm glad Max is thriving with his career and enjoying it. He sounds like a right character.

I could relate to some of the content in this book as I have children with sen needs and the fight you go through to get them the best/suitable education.

[Bookguide · Rating 3 out of 5]

This isn't the book to read if you're looking for official background information and advice about Down's Syndrome, but is an interesting insight into the world of a mother of a handicapped child. About the struggles with bureaucracy, the extra effort it takes to get the best for your child to help him achieve his potential, the mixed feelings of love and pride in all he has achieved combined with irritation and frustration at the things he is denied. Sandy Lewis is completely open about her inner dialogue and her own feelings, at the risk of being too open and revealing the ugly thoughts and actions as well as the more admirable ones. I recognise her feelings evoked by having a second child who is more neuro-typical which allows you to thumb your nose at all the family, experts and strangers who have cast aspersions on your ability to parent, because now you can finally show that your eldest child's challenging behaviour is not the result of lack of mothering skills:

"Having Charlie empowered me: I could now see with my own eyes, understand with my own mind, all there was to know about a 'normal' baby and I felt reassured because I saw there is no difference. That knowledge gave me strength. I was no longer a poor excuse for a mother. I could now raise my head high and rebut all those people who'd levelled at me the charge of not understanding real motherhood. Having Charlie enabled me to click all my armour into place. I no longer felt vulnerable, as if I was someone who could evoke only pity.
I felt no different towards either one of my sons, but it made me feel very different towards everyone else."

Sandy Lewis comes across as a somewhat neurotic first-time mother who gets stuck in the role of protector and defender of a child who needs fighting for. I respect her for the fight she put up for her special needs child, but sometimes she does seem to have a thin skin, being hurt by people looking twice at her son; she assumes that this is due to pity or curiosity, rather than simple interest and enjoyment of a childlike individual. It must be a difficult path to tread, but at least outsiders are able to see the visible signs of handicap and hopefully make allowances.

It was also interesting to read about how Sandy turned to homeopathy and alternative remedies to help treat Max's health problems. I know how desperate a sick child can make you and whatever the hard science says, many alternative therapies help. I'd forgotten about cranial manipulation; a friend of mine had fantastic results with it for her daughter who had constant ear infections.

Sandy Lewis' book is perhaps not perfectly written with somewhat too much "poor me" complaining for comfort, but I nevertheless enjoyed it as a view into a positive way of living with a special needs child. I have to say that I preferred Jacqui Jackson's Multicoloured Mayhem: Parenting the Many Shades of Adolescents and Children with Autism, Asperger Syndrome and AD/HD and various other personal accounts of parenting children who need extra help, but that may have been because I identify more strongly with autistic spectrum and ADHD / ADD books. Nevertheless, it was worth reading.

[Kelley · Rating 1 out of 5]

Don't read, esp. as a new parent to a child with Down syndrome. I'm still working on getting the things "learned" from this book out of my well-meaning relatives' minds.
Why? #1: poor writing style (often feels like reading a list of What I Did Today)
The other reason (why not for new parents) is that Max has some severe problems and the book doesn't help you to understand that these are not universal!

[Beth Lee · Rating 4 out of 5]

It was a good book, about a little boy with Down syndrome and gives an insite into what it was like growing up to (0-13yrs) and showed his great personality and zest for life. Would read it again, it is written by his mum who has gone through struggles of her own e.g depression, alcohol and people critising her and looking down on max. He does not let anything bother him, and even gets a starring role in a drama on tv.

[Fiona Vieira · Rating 3 out of 5]

Shares both the worst and best things that they have faced as a family.