eSpecially Ben

Early in my career as Ben’s mom, there were some situations where I was adversarial in my responses and reactions to circumstances where I thought Ben’s needs were not being met. With guns loaded, ready to fire, I would take out anyone who I thought might not be giving Ben the best possible care. Instead of making the situation more positive, I may have alienated the people who could really help me. I realize now that almost everyone wants to provide the best they can for Ben or any other child that has a special need. Like with anything that is sensitive and very personal, misunderstandings happen easily and can add to an already emotionally charged issue. The parents have emotions about what they expect for their child and others have emotions about the unknown. Fear, uncertainty, worry are all floating just beneath the conversations you may have when you are asking for assistance for your child. Being an advocate means partnering with others, building relationships and being aw

Ryan and I spent two nights away a few weekends ago – without the boys. We had not done that in two years, and even then, I was 7 months pregnant, so technically we were not alone. We were giddy like school girls (to steal a saying from Ryan), so giddy that we got lost on interstate 77 for at least an hour (that’s what we are willing to admit.) We were headed for Ohio and almost made it to SC. In our defense, we were talking and laughing and relishing in the fact that no one was seated behind us in the minivan. One thing that we discussed was how calm and at ease we were with each other, so calm we never paid attention to which direction we needed to go when we left the gas station. We were together for nine years before we ever had children – so we had a lot of time alone, and I know we never stopped to appreciate it. Nor could we have. When I see couples who are about to have a baby, I want to say, “Go out, spend time alone with each other. It will be years before you will have

We have three boys – Ben (6), Logan (4) and Sean (1 ½). As probably any parents do, we are always amazed at how different they are from each other. But more than that, I have been shocked at the relationships they have formed with one another, but especially with Ben. The dynamics that I would expect between three typical boys are present in our house. Even though Ben is different, his brothers treat him the same. My favorite story is about how Logan at the age of two made sure that Ben was not overlooked. I took Logan and Ben to the doctor. As many doctors do, if you are good, you receive a sticker. After both boys were examined, the doctor returned with one sticker for Logan. Logan asked the doctor where was Ben’s sticker. The doctor responded that Ben would eat his sticker. Logan told the doctor that we would put it on Ben’s back. Realizing he had been outwitted by a two year old, the doctor quickly went out and returned with a sticker for Ben. I have been surprised by the way

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."