My son Leo is on a medically managed diet for a non-autism-related medical condition. Which is easily manageable, as long as we plan ahead. Every so often, though, we find ourselves in social situations with dietary complications, and encounter folks who dismiss our, "I’m sorry, he can't eat that," with, "But why can't he have just one bite? Surely that won't hurt."
If you've ever been that causally dismissive person, I'm asking you to please stop. Please stop right there. And listen hard, and then repeat: Do NOT contradict someone who has told you their child can't have a certain food. Don't do it. Just don't. Again, please.
I'll be brutally honest right up front here.I am ashamed to say that before I had a daughter with disabilities, I was totally unaware of just how insensitive, uncaring, and even cruel our world can be toward people who have special needs.I had absolutely no idea how unprepared our world is to accommodate those with special needs so that they can easily be included in all aspects of society....more
This illness has been a blessing in disguise - It is my opinion that no parent should ever say this about their child’s illness, at least not in their child’s presence anyway.There are absolutely no blessing in my daughter, Bethany, having had a brain tumor nor are there any blessings in the disabilities she has acquired from complications during the surgery required to remove it....more
I spent a very special day in Chicago yesterday with my daughters. We were celebrating my ten year old daughters making it through a whole year after her intensive surgery to lengthen her tendons and to replace her hips. It has been a long, very hard, very painful year for her, and I thought it was a perfect opportunity to celebrate and make a negative turn into a positive....more
Since we are going to be spending time discussing how to handle your child's special needs village I have decided to create a list of personnel that are essential to a well functioning machine. I have found that at any given time I have had at least half of this list (at times in life almost the entire list in fact) working in concert making certain that the boys functioned to the best of their ability. By the way the list is as valid today, for my young-men, as when they were in pre-school : YOUPsychiatrist...more
Welcome to the new year. After you put away those Christmas decorations or your Hanukkah menorah, it is time to get down to the business at hand. Preparing for your child's yearly IEP meeting/program review. Now you may have had meetings throughout the year with concerns, additions to programming, extractions from programming, behavioral interventions and education supports, but now comes the time to prepare for the year to come....more
I wasn't prepared for this. No one told me how to take my personality, my intelligence, my accomplishments, my ambition, my ego and put them all behind a gauzy thick wall that mutes most voices and distorts the sounds of everyday life. The siren could be a whistle or a baby screaming or someone's worn out rear brakes, I won't know until the ambulance crosses the street in front of me....more
Reading is by far one of my favourite forms of therapy. There’s nothing quite like the stirring of emotion and relief when I open a book and find out that there is another person out there, somewhere, who knows what it feels like to be me....more