How Advocate Homes Began

 

 

 

          We became parents at a very young age, to a beautiful little girl named Cara. Her entry to the world was premature— thirteen weeks to be exact. She weighed barely two pounds, was less than 13 inches tall, and was the light of our lives. Her life ended before her sixth birthday, and although her days were filled with the rigors of Cerebral Palsy, eighteen shunt surgeries, two hip surgeries, and weeks-long hospital stays, we felt blessed. She never complained, and she lived long enough to be a big sister to her brother Michael, to fall madly in love with her physical therapist, Carl, who sneezed louder and funnier than anyone she knew, to learn how to hug, and most importantly, she knew undeniably how much she was loved by everyone who knew her.

          Eleven months after Cara died we gave birth to Joe, a beautiful, fat little baby diagnosed with Down’s syndrome. Cara must have hand picked him from the “special” babies wait-station up in heaven because she knew how much we loved to laugh. His innocence and silliness, and constant mischievous nature were an unexpected and welcomed transition from grief.

          During Cara’s schooling in the early 1980s, she attended a wonderful 0-3yr. program followed by two years in a special education preschool. I watched in dismay as the pendulum swung from programs in these wonderfully specialized schools to the only choice parents would have, which was mainstreaming.  It wasn’t so much a choice as it was a new direction we were forced to follow, whether or not we agreed it was appropriate for our child.   

          While I can certainly appreciate the “idea” of inclusion, our first-hand experience was that it worked well part of the time, and only when our own children were very young. There is something to be said for intensive individualized care for our children with special needs, which mainstreaming simply cannot match. Cara’s life ended before she experienced the educational shift, and sometimes I am very grateful for that. My experience with Joe was that as he aged and the developmental gap grew wider, he became more secluded than included.  

 

          Joe’s reaction to inclusion within our heavily populated neighborhood schools was an immediate increase in negative behaviors. He was obviously overwhelmed by this environment. Luckily, I had five years of Cara’s educational programs to compare to, much to the displeasure of Joe’s school administrators. I am quite sure ours were probably their least favorite IEP meetings to attend. As most parents were fighting for inclusion, we wanted the opposite. I became a staunch advocate for what I believed was in the best interest of my son.

          We were finally granted permission to transfer him to a small school out-of-district, which was exclusively for special needs. From that point forward, Joe blossomed. He worked on basic self-help skills and prevocational training in a small-group setting, supporting his success. He competed year-round in the Special Olympics, attended school dances and community outings, and was a proud member of the Senior Prom court. We will always be grateful for these wonderful experiences, and we know they would have never been possible in a mainstreamed program. This was the right choice for Joe. He remained in self-contained programs throughout high school, and graduated in 2006. 

        We explored our options for residential and day programs since Joe was fifteen years old. There were so few to choose from, not to mention the years-long waiting lists for the good ones. We also had the obstacle of Joe’s occasional behaviors. While not considered severe by any means, they certainly do exist, especially with unfamiliar surroundings and the stress of transitions. I think this is common for many people with disabilities. The chance of his being accepted for admission was limited at best, so we were left with our only other choice of an empty, secluded, and nonproductive adult life for him.

         Faced with this dilemma, we knew we had to create a better life for him. Our main focus was to continue the activities that helped him the most, and ones he truly enjoyed; cooking, self-help skills, pre-vocational skills, computer time, music, art, sports, dining out, movies, and dancing, to name a few.  Keeping him active eliminated boredom and also provided opportunities for growth. There is a marked difference in his attitude when he is busy and has plans.  And boy, does he want to live with friends!

         Let’s face it. School cannot continue forever, as much as we wish it could. Our children with special needs will probably live far many more years as adults than as children, with or without us, and the need to provide security and continued opportunities for them is entirely in our hands. We cannot do it alone. For those who seek an alternative solution, we have created Advocate Homes.