There are books and then there are books like ‘Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier’, which true to its title, gives the readers what they need the most; advice without a patronising tone. In fact the best thing about the book is its friendly and conversational tone, it seems Ms Natalie Hale is sitting across you talking over a cup of coffee!
Before moving ahead, let me clarify that this is not a book review. This post is not for me to talk about good things, the ‘could’ve been better things’ about this book. This post is about sharing the wonderful gems of information that helped me on my journey so far.
There are many great things about this book. Short chapters, practical advice, indispensable information, uplifting stories and the best of them all is beautifully woven humour throughout the book. I would like to share a few of my favourite quotes from the book, which would come handy if you are a parent and haven’t read it as yet.
Natalie starts beautifully by comparing Down Syndrome as a yellow rain coat that your child is wearing, She writes,
“The raincoat is Down syndrome. It covers the child; it keeps everything hidden, unknown. At first, you notice that all the raincoats look-alike: after all, most were genetically manufactured in a single factory, located at Chromosome No.21” And the “care instruction” attached to the garments all indicate: See medical protocol on reverse. Oh, and good luck.”
She goes on writing, “In the overwhelming emotional complexity of those first months, you might not notice that the raincoat has buttons. When you do, flashes of possibilities might flit briefly across your mind. Buttons. Yes…there are buttons! Maybe, just maybe, you can help Down syndrome to hang a little loose around your child.
Very subtly then, she talks about ‘Unbuttoning The Raincoat’ and states,” Gradually begin to get the hang of working with those buttons. We learn to see past the obvious, to sense what lies underneath that raincoat. Working with one button at a time, we learn to observe, to perceive, to develop our own awareness and vision beyond the obvious, beyond that raincoat. We begin to understand.”
How beautifully put! This is one of my favourite paragraphs from the book. Not that there is any dearth of engaging, entertaining and meaningful words in this book. There are great quotes at the beginning of each chapter which kind of set the mood subtly. The one I like best is “If you want to be happy, be.” -Leo Tolstoy”
The advice that Natalie gives is constructive and practical. She comes across as someone who knows what she is talking about. as a parent you’d instantly know that she has been there and done that and, it is not coming from a professional who have no hands on knowledge about the real issues”.
This quote for instance almost connects with you…
“In my case, I knew I needed to build a protective shield around my own positive concept of Jonathan until my mind was strong enough to withstand opposing opinions of my son. I did not become strong overnight. For several years, I purposely avoided anyone who had a negative view of my son and the disability he involuntarily owned. I had to get strong for the journey ahead, and I knew that wasn’t going to happen if I continually lose focus dodging negative “Oh, what a disaster!” bullets. When several years passed and I felt emotionally and spiritually strong enough, I knew I was ready. I felt that nothing could topple my attitude, my inner vision of my child; that vision was set.”
Also
“ I believe that our children with Down syndrome have neither the heart nor the capability for dishonesty or prettiness. They easily cut through the red tape of life and do directly to truth, and I am convinced that we cannot be parents of a child like this without belonging to the same visionary club as do our children. Our understanding is forever expanded, forever altered There is no way back to unawareness— fortunately.”
The book is divided into 7 chapters and 29 topics. They are balanced by addressing almost all the issues that a parent is expected to go through in the initial as well as the adult years. Topics like ‘Intuition, Communicating Emotions, The Noncompliance Face-off and a few others have priceless information about gaining an insight into our children’s soul.
A great quote from ‘ Nurturing the parent’ helps you put things back in perspective “Your child’s special needs will still be there tomorrow; will you be up to it if you fry all your adrenalin today? If you don’t already know what floats your boat, think about it until you do. Then make sure you fit that into your life in some way. What makes you feel nurtured, cared for, fulfilled, and happy?
About teaching reading, of which Natalie is an expert, she has given ample anecdotes, reasons and examples of pursuing this skill steadily. She has written about the methods, the techniques, and the science behind teaching reading at any age and one can’t feel anything but motivated to equip their child with this life skill.
P.S- I was absolutely impressed with Natalie’s reading methodology and books, even before reading her parenting book. I followed her advice to get my daughter started on to the path of reading and she is a great reader now.
Natalie also gives a very practical advice in the chapter, ‘Non-Compliance Face-off’
About dealing with Non-compliance she suggests a great method, “Once your child is past the toddler stage, the sandwich method is terrific when used repeatedly.
The Sandwich Method is a system of A-Z-A, Z being the end zone of what you actually want the child to do.
A: I’ll give you what you want if…
Z: You give me what I want.
A: Remember, I’ll give you what you want.
The sandwich method is enormously helpful in facilitating transitions, the accomplishment of which simply does not come naturally to many of our children.”
About the same topic, Natalie discusses ‘ Honesty as last resort’ for Non-Compliance which makes so much sense after the elaborate explanation.
she advises, “We often make the greatest breakthroughs when we drop our “parent-stands-with-stiff-upper-lip” stance and speak from the heart of our emotions straight to the soul of our child with Down syndrome. Our children hear. They get it. They respond. It really is a core-to-core, soul-to-soul communication, and it’s awesome to behold when it happens. When you’re standing in that moment and living it, you will feel as if your child’s cognitive delays totally fall away and reveal the actual understanding and intelligence hidden under that Yellow Raincoat. Remember the Raincoat? Good.
Her insight into ‘How to Ruin Your Child’ will surely make you stop and reflect at your parenting style and ask a few questions? of course unintentionally!
She writes,“Perhaps the greatest value for our children with Down syndrome lies in the inestimable payoff of heightened self-esteem and the certainty that they belong to the family unit as one of its contributing members, They are not there just to be served; they are there to work and contribute. They are valued and relied upon.”
The further chapter talks about School years, Inclusion, Transition process, Third diagnosis and much more. The writing is simple yet effective and the advice very friendly and first hand.
There are many many more great advises and heartwarming experiences that resonated with me as a parent and I hope those of you who plan on reading this wonderful book will find it totally worth your time!
Thanks for dropping by. Please leave a comment if you liked the post
For more information, you can refer to Natalie’s website here www.specialreads.com
I loved this book so much I plan to read it again. Your daughter is gorgeous 🙂
Thanks Ratline Barton. I loved this book too 🙂