Skip to main content

Posts

Paradigm Shift

I grew up having a great birthday party each year – with friends, Carvel ice cream cake and games. It is important to me that our children have that experience as well. Each year, I’ve stressed over how we can make it great for Ben too. This year, I changed my perspective – it needed to be great for Ben – and that meant changing my view of birthday parties. Ben’s favorite place to eat is Fuel Pizza on Central Avenue – it has TVs anywhere you look, excellent pizza and a low-key atmosphere. I planned a 2 hour party with family and friends with pizza and Bob the Builder cupcakes. After one hour, several slices of pizza and two cupcakes, Ben was ready to leave. With the help of Grandma, he made his way to the exit. Party was over. A paradigm shift is necessary. We, as parents, cannot apply the same standards that we use everyday in our own lives or from our childhood to plan, make decisions or even measure success. A whole new scale must be developed when you have a child with special ne

Deviant Thoughts

I recently read the above title on another blog and thought, finally, someone is going to talk about the negative thoughts, the difficult feelings and the harsh realities that accompany the world of special needs. It turned out to be about someone ranting about their guilty pleasures. So here is my attempt to tackle the topic. Ben’s behavior therapist is researching the process in which parents go through after learning they have a child with special needs for her doctoral dissertation. This may be ground breaking territory. I am unaware of a model that discusses how parents and families move through the emotions of this experience. If you think of the grief process with individuals moving through denial, anger and acceptance, this would be a similar model. What would be the steps for parents of a child with special needs? Denial, anger, withdrawal, acceptance and action/advocacy may be a part of it. Like many models, people could cycle through these levels more than once depending

Basic Instincts

When Ben turned three years old, his services were turned over to the school system. This transition meant a new school placement for Ben. We have been incredibly lucky to have had caring case managers, teachers and therapists to work with Ben since he was a baby. I trusted their ideas and suggestions. At the big transition meeting to determine a new school for Ben, this group told me that there was one school Ben just had to attend. From what they had heard, it had the best teachers, therapists and reputation. I visited this school. I left knowing that something was not right. I could not put a name to it, I could not tell someone why, when asked. I questioned this doubt, pushed it aside because everyone else knew better than me. They'd been doing this longer. At first, we sent Ben there five days a week, and slowly, moved to two days a week for a couple of hours, then yanked him out quite abruptly. Three years later, I have perspective on this experience. At the time, it co