eSpecially Ben

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...

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 ...

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...

It's been a long day with little sleep - can't blame the kids or the husband (he yelled at 1am for me to come to bed). I'm not good at comebacks but later I did think, I should have said, "Did Mrs. Einstein yell, 'Hey Al, come to bed, it's getting late and that stuff you're working on can wait.'" I was up until 3am working on this blogsite. It has been in the works in my head for a long time. And for whatever reason, I had the courage to do it. Perhaps it was last night's book club discussion about "Loving Frank." Perhaps I was just ready. So thank you to anyone out there who has read some of my postings. It is encouraging to hear your comments, ideas and thoughts. This is all new and I will use the words of my good friend Tracy, "Trust the process."

When my son was three, he saw a psychologist for a consultation. She told me about a family who had a 27 year old daughter with Down Syndrome, living at home. After a discussion with the family and some observation, she determined that the daughter could be doing about 30% more on her own. At the time, I took the story at face value – a therapist sharing a story about another family to try to break the ice, make me feel comfortable. After the session, the psychologist’s words kept coming back to me. Was the story a gentle way of saying that my son too, could be 30% more independent? My mom shared a story with me several years ago about how my aunt asked about her parenting philosophy. My mother had responded that from the moment a child is born, it is a parent’s responsibility to help that child to succeed on their own. This comment has stuck with me. More than a year ago, one of my son’s teachers asked me what I saw Ben doing in the future. I was dumbfounded - he was 4 ½ at the...

Going out with a child who has disabilities can be an emotionally, physically and mentally draining event. Where can I park? Do they have accessible restrooms? Will people stare at us? What if my child decides to make a lot of noise? How will I get my child around? Because of these questions and worries, I am not surprised that there are always so few children with special needs out at Discovery Place, Imaginon, Nature Museum and all the other places Charlotte has to offer. It can be a terrifying thing to do! The first few times I took Ben out in his walker, I fought tears the entire time – tears for being so proud of him and for being scared of the possibilities, good and bad. In the 6 years that we have been taking Ben places, we have had one uncomfortable situation where a parent did not address their child’s rude comment. Other than that, we have many children come up and ask questions about Ben, his walker and why he is the way he is. I always make it a point to thank the child...

Making friends for any child can be scary and intimidating, but when it is successful, children can meet people who may be a part of their life for a long time. As we all know, friends are an important part of growing up. Children with special needs are no different. They need that experience as well. If your child is non-verbal and/or has physical challenges, it may be a task that involves creativity and planning. Here are a few ideas that may help you get started: Get a class list Ask the teacher if it is okay for them to share the names and contact information of the students in the classroom. This list of names gives you an opportunity to talk with your student about the children in the class. If it seems that your child has interest in a few, you may try contacting the parents. One day while visiting my son’s classroom, I noticed another child putting his arm around my son and trying to sit next to him. I made contact with the mom and we had a “playdate” at our house – playin...