Emma Pivato's Blog

                   The Travelling Bathroom Dilemma   Request for Submissions    Stories about Inaccessible ‘Accessible Washrooms’     Editor:  Emma Pivato   Stories 2 to 6+ pages in length will be considered.  You can talk about your worst nightmare story of being stuck in public without a washroom that works for you, or you can just talk about the daily grind and all the things you don’t get to do because of this problem.  Also talk a little about yourself or your child:  who you are, what you enjoy doing, what you would like to be doing in terms of travelling or socializing or work or school, if not for this problem.  If you are parents, you can talk about the effect on siblings and the extra burden this bathroom problem has placed on you and your partner, as well.   This book of stories will bring this problem out of the shadows an...

  Alexis age 11 - at school                                                  Alexis, age 30, and Joe in Mexico How to make lemonade out of lemons – even when the lemons are bitter Lesson One:  Trust Your Instincts – When Alexis was born in 1978 I was told by the attending pediatrician that she was fine, even though the delivery had been difficult.  She was not diagnosed until 9 months later – although I always suspected.   But by that time I was used to seeing her as a normal baby with normal baby needs.  Besides, I was at that point working towards a Ph. D. in Developmental Psychology so I was oriented towards meeting  developmental needs, not special needs.  An incident which occurred shortly after her diagnosis as blind and “severely developmentally delayed”  pushed me even further in that di...

  Alexis awakening to the sound of her niece playing a jazz piano piece. What is it to be human?  Aristotle defined ‘man’ as s a rational animal. And the French rationalist philosopher, Rene Descartes (1596-1650), opined that only humans have souls.   He suggested that animals, by contrast, are mere clockwork automatons preprogrammed through instincts and impulses. John Locke, a 17 th  century empiricist and an important enlightenment thinker, picked up Aristotle’s  tabula rasa concept,  stating that human beings are all born as blank slates on which experience writes itself to form us into the persons we become. But he would probably have agreed with Descartes that animals have preprogrammed slates on which nothing new could be written that did not fit into their pre-existing automaton code. The German philosopher, Edmund Husserl (1859-1938) had a different view of the relationship between humanity and the rest of the animal world. He wrote a treatise...

                           Alexis' 40th birthday party, with her friend, Trevor blowing out the candles. Alexis at 40 Who knew that a daughter born with such multiple challenges and crippling epilepsy could live this long – certainly not the many specialists we have contacted through the years.  Who knew that by taking such good care of her we would continue to enjoy the pleasure of her company on a daily basis in our old age?  Certainly not us when we undertook this commitment to her at the time of her diagnosis at 9 months of age. Did we do the right thing by wrapping our lives around her?  Did our other children suffer too much?  Did we give up too much:  career-wise, socially, personally?  As I conclude in the memoir I have just finished, that is a question that can never be answered.  One thing we do know for sure:  she would not have lasted otherwise.  ...

  Gourmet Puree: What to do when you can’t chew!                               Polenta and baccala, soft, delicious, and easy to swallow Why should  I  write a cookbook?  I don’t even consider myself a particularly good cook – although some people would disagree.  Well, for one reason, I  do  like to cook.  Mostly, I like to experiment.  But the main reason is because of my daughter.  Alexis does   have a good palate, even though she can’t see, talk, chew or sit up independently.  Also, she can easily choke when she eats –and particularly when she drinks. You might think this is a very rare condition and therefore the market for such a book would be exceedingly small.  But you also might be surprised!  My 95-year old friend tells me that she now grinds her meat and adds it to thick soup bec...

  A Tasty Vegetarian Dish Cleanliness in food preparation is always important but when working with puree that is doubly so since there are so many more food surfaces to provide a welcome host to germs.   Disposable food preparation gloves are readily available and should be used whenever direct hand contact is required, as in deboning chicken for example.  Otherwise, just follow normal hygiene practices:  clean apron, short, scrubbed fingernails and extra clean hands. Good nutrition and calorie control are important for anyone, but it is critical for anyone with medical problems or physical limitations.  For starters, there is no room for empty calories for anyone confined to a wheelchair or with limited capacity for exercise.  Extra body fat on inert and/or poorly muscled bodies just imposes an extra burden on the heart, impedes movement even further and places additional pressure on caregivers.   If any digest...