That Very First Book Post-Diagnosis

March 8, 2011

When my husband and I were told about the possibility of Down syndrome after the birth of our daughter, the hospital social worker gave us some informational materials including a guidebook on the subject.  My husband took the book and read it cover to cover in the first days of our daughter’s life, whereas I took one look at the projected IQ chart and the generous use of the word “retardation” and quickly despaired.  The book was over a decade old – ancient in terms of a book on medical issues – and unfortunately I found the attitudes and terminology expressed in the book to be less than comforting.  When I became aware of others reading the book, such as a friend and my mother-in-law, I felt ashamed and embarrassed.  They would now clearly know how my life had taken a sharp turn for the worst. There it was in black and white after all!  I wanted to be positive, but there didn’t seem to be much to be positive about. 

How completely wrong that impression was, as I now know!   I wish I still had the book to see if it really was that bad or if it was just my mental state that made it so, but with great satisfaction, I tossed it in the recycling bin a couple of years ago, and I hope that its paper is now being put to better use than devastating new moms!

What this experience made me realize is that the first book a parent is handed is something that should be determined with absolute care and consideration for the circumstances.  It should not be a book the hospital has had for years, even if it is the only thing they have to hand out.  Quite frankly, it would be better to receive nothing.  Many parents in this situation are sitting in the hospital trying to figure out if they can even handle raising a child with special needs or whether the child might be better off being adopted by another family.  Being completely unaware of what life with a child who has Down syndrome will be like, parents may be at an absolute crisis point, and it would be utterly tragic if such a life-changing decision was even remotely based on attitudes from fifteen years ago.

What kind of resource would be appropriate?  Well, the language used and the overall outlook expressed by such materials need to be encouraging and free of judgement.  The message has to be that there is a hopeful and optimistic future in store, but at the same time there needs to be empathy for what the parents are experiencing.  After all, it is not easy.  Parents will never, ever forget those hours that changed their lives, but a comforting and encouraging start can do wonders for how their own attitudes will develop. We look to those pages for a glimmer of “it will be ok”, and there are such books out there. We just have to make sure they reach the right hands at the right time.

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{ 4 comments… read them below or add one }

Maureen Braun March 10, 2011 at 11:24 am

It is sad to hear when hospitals are giving out, unhelpful and outdated materials, especially in situations that are as life changing and sensitive as this.
Unfortunately it happens all too often.
If possible it would be good for a parent to notify the place where they received it and give a better resource.

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Heather March 10, 2011 at 11:31 am

You’re absolutely right. And in fact, I may give them a call! Our local DS association really needs to check in with hospitals every so often to make sure they have helpful materials. After all, the other parents do know best!

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carole spyridaki March 11, 2011 at 1:37 pm

yes, i do recall the hours reading that book.
it was…..well, anatomical…cold. factual.
probably useful. surely not what was needed those days.
one of the nurses at the neonatal where rach was, tho, was perfect!
perhaps they all were, but this one lady is indelibly placed in my mind and heart for her words and attitude.
i feel sure you’ll correct the book situation soon, heather!
carole

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Heather March 11, 2011 at 3:47 pm

Yes, I’m not sure you need all those facts about what can go wrong with your baby. Imagine if all new parents received a book about every health issue a child could have… I think, like dealing with the nurse you mention, you just need to focus on your child and learn what is important in that particular situation.

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