Ever have that feeling of helplessness when your child is sick or in pain? You know you’re doing everything within your power to make them feel better, but you still can’t help but feel helpless and inadequate. I struggle with these feelings everyday. My son, Aidan, is completely trapped in a body that doesn’t work for him. He suffered severe jaundice as a newborn and he is now unable to walk, talk or eat by mouth. Thus far, I’ve privately endured the roller coaster ride of raising a special needs child. I am grateful to have tremendous support from a great husband, loving grandparents and a conscientious nanny. My husband and I are very active social people and we enjoy doing and experiencing things. And as much as possible, we’ve included Aidan in all our family activities. Dining out (even though Aidan doesn’t eat), playing tennis, skiing, swimming, enjoying the beach, vacationing – Aidan is included in all that we do as a family. So up until now, Aidan has attended a special ed school for his preschool years. But, in three days he will embark on the unpredictable path of full-inclusion with “typical” kids at our local elementary school.
Even though his comprehension may not exactly be at his age-appropriate level, Aidan is so cognitively aware that I think it would be a disservice to him to keep him in special ed. His preschool class had a few peer models (typical children) part of the class and it was very inspiring and motivating for Aidan to be with these walking, talking, kids his own age. And, one of the best things I believe I’ve done for Aidan is provide him with a younger sibling. Connor, his 3 ½ year old brother, has been a wonderfully positive influence on Aidan. He gets more exposure to kid stuff – TV shows, characters, development of language and the learning process. I fully believe too that, having Aidan as his brother has made Connor a more sensitive, affectionate and giving person.
Thus, I approach this new journey of full-inclusion for Aidan, with a lot of fear and anxiety, but I also have high hopes; which is why I’ve decided to BLOG about it. I know that I’ve taken a big risk with taking him outside the protective and secluded bubble of his special ed school. But, we’d never be happy with keeping him in seclusion. As Aidan is an active included member of our family, we’d like for him to also be an included member of our local community. When I am out with Aidan, I know that people stare, talk behind our backs, look and wonder with curiosity. But, I hope that in time, those stares and snickers will turn into friendly greetings and exchanges.
This BLOG may offer readers a peak into our daily lives. It may shed light on human nature. It may delight you or it may offend you. But, what this BLOG truly will be is just my personal perspective on our life experiences.
To get a better understanding of our unique perspective, it helps to understand our local environment. We moved to Pacific Palisades in December of 2005. Pacific Palisades is an affluent, upscale zipcode that often gets an eyebrow raised when mentioned, much like the mention of Beverly Hills or Palos Verdes. This predominantly White community, touts a median home value of $1.9MM and a median household income of about $140K. How many families with a severely disabled child are living in the Palisades? We may be the only one? We chose the Palisades because of its proximity to the ocean, and convenience to Kevin’s office in Westwood, and the newness of our particular neighborhood, The Highlands. The Highlands is a small community tucked away behind a canyon built along a mountainside. In terms of planned, cookie-cutter communities, The Highlands is just a notch below, Irvine, the gold standard of planned communities. It’s kind of like having a bit of Orange County in L.A. And, the main reason why we chose our particular house was because it has an elevator…for Aidan. Our house is 3 stories with garage on first floor, living room and kitchen on second floor, and bedrooms on third floor. Besides being hugely useful for getting Aidan up and down from floor to floor, the elevator has proven to be really handy for groceries and heavy luggage.
To me, the Palisades is a rather intriguing and eccentric community. Even though we’ve lived in the Palisades for almost 4 years now, I still feel like an outsider. As I started to take Connor, my youngest boy, out to local parks, and to Mommy and Me classes, I started to get a real flavor for life on The Westside. Having grown up and lived on The Eastside (San Gabriel Valley) most of my life, The Westside to me is anything west of La Cienega. We’d go to the local parks on the weekday mornings and see lots of little blonde-haired, blue-eyed tots with their Spanish speaking nannies. We’d pull into a parking lot of a Mommy & Me class and encounter every kind of luxury SUV out there…Mercedes, Lexus, Cayenne…all outfitted with at least one Britax carseat. Sprinkled among the attorneys, financial advisors, and entrepreneurs, are the entertainment types. Connor’s toddler class teachers were teachers by day and actors by night. My tennis class had writers, directors, even the instructors were wanna-be actors. I run into the wives often during preschool drop-off hours. They are usually dressed in workout clothes and face in full make-up. The moms all seem to know each other and tend to be rather cliqueish.
Obviously, this community will have its perceptions, prejudices and social barriers. Nonetheless, because of my unique family, I may always feel like an outsider.