eSpecially Ben

I am a mother to four year old boy/girl twins. I have a 20 year old step-daughter who has never lived with us and who we rarely see. My son was diagnosed with Autistic Spectrum Disorder in November 2010. From a very early age, my children were, as the English say 'chalk and cheese' - as different as night and day. My daughter was happy, outgoing, easy to please and to play with, and constantly wanting Mommy's attention. My son was happy, but more content playing on his own. He actually taught himself to walk and now he is teaching himself to read. My daughter has grown up listening to and dealing with my son's tantrums and repetitive play scripts. In order for her to have a playmate in him, she has had to learn to 'read' her brother and play his way, which is sometimes very difficult. I know we often expect much more from her than we do from him and this bothers me. I find myself scolding her for not telling me when he's getting into something or

Matt and I have been married for 12 years. I always wanted to be a mother and I was finally blessed five years ago with a healthy baby boy, Jason. Two years later we welcomed Luke to our family. Luke was born after a normal pregnancy but was sent to the NICU since he was 5 ½ weeks premature. During his hospital stay we learned that Luke had some health issues and was later diagnosed with CHARGE syndrome. Despite his health issues Luke was a great baby. He has an easy-going and happy personality even while under-going multiple surgeries and procedures. The decision to have more children after Luke was not an easy one. On one hand, I loved being a mother to my two amazing boys and yearned for one more child, hopefully a daughter this time (although I would have been happy with three boys too). On the other hand, would we want to take the chance that our next child would be born with a disability? Luke’s expression of CHARGE is relatively mild and I knew it can be so much more debilitat

Here are my annual photos of the first day of school. Sean is just glomming onto his brothers' first day of school. His is next week. Ben and Logan attend different schools but wear similar uniforms - polos with khakis. I was not successful in getting the school to allow Ben to walk onto the bus without the Convaid Stroller - at least for now. However, they are meeting Ben at the bus with his walker. According to the teacher and by judging how tired Ben is at the end of the day, I think he is spending a fair amount of time in his walker. One night, Ben actually fell asleep at the dinner table. New school & environment, but familiar people are with Ben throughout the day. The principal and assistant principle know Ben from when they worked as a team at his preschool. And the kicker...we walked into Ben's classroom at Open House and the teacher is a friend and neighbor with whom we lost touch after they moved away ten years ago. I don't know how i

Sorry - the video will no longer work! I will keep working on it. At the pool, Ben initiated this activity over and over. It was the first time he has ever done this. He must have done it at least 40 times. He knew what he was doing was good and he kept practicing. All his cousins, grandma and aunt were there to witness this enormous achievement. Other children in the pool gathered around him to watch. It was a very special thing to see.

talk to a three year old. At our house, Star Wars is the main event - from playing with Star Wars Legos to watching the movies to fighting with Light Sabers. One day Logan and Sean, were acting out the duel to the death fight between Luke and Darth Vader, with Logan playing Luke and Sean playing Darth Vader. I overheard Sean say to Logan, "Luke, you are my son." Well at least he got the familial relationship correct, if not the line. My Dad and his brother Arnie are identical twins. I am sure that over the years, they have heard every possible comment about their resemblance. They may have added a new one to the list when Sean said, "Uncle Arnie, you and Grandpa have the same head." Having a bad day? Need a pick-me-up? Find yourself a three year old who will most likely have something funny and insightful to say.

I have written about Dwayne, Ben's OT, for the past several years. Dwayne was part of Ben's Speech/OT Dream Team. For personal reasons, Dwayne must move from the area. Ryan has taken this the hardest. It is the first time he knew one of Ben's therapists. Dwayne came at a time that Ryan was home from work and their mutual love of basketball and football developed into friendly banter about which teams would do the best and worst. When Dwayne told us about the changes coming, I was not surprised or broken-hearted. Ryan thought I was being cold, but Ben has had more than seven years of therapy, meaning more than seven years of therapists. I have seen good ones leave and have had a hand in helping bad ones go. Some have come back to us after moving away. Some I see at the park and library with their own children. Some have referred their new clients to this website, and I have become friends with the clients. Some keep up with us on Facebook. And one drives with us to New

Grandpa and Logan after finding the Bamboo Forest. My father somehow promised to take Logan to a Bamboo Forest on Long Island last year. They talked about it a lot, and it was built up so much over months of planning that I was worried that Logan would be disappointed. No such thing - it was truly a forest with trails for the kids to explore. I had been to Frank Melville Memorial Park many times as a teenager and adult, but did not remember all it had to offer. Check out one woman's Photo Essay for the Frank Melville Memorial Park . If you live close by you will want to visit. We did see a bunny and a very large turtle (3-4 feet in length, including tail) swimming in Mill Pond.