eSpecially Ben

My business partner has a saying that he uses often in our team building and leadership activities with groups, "Trust the Process." Tracy usually shares this tidbit when the group is struggling through an activity or wondering how solving a puzzle will help the group form a more cohesive bond. I am trying to keep this philosophy as we go through more tests to figure out what Ben's actual diagnosis may be. In my post, The Allusive Diagnosis , I mentioned that Ben's tests revealed a strange discovery - they located an abnormality on the X chromosome, one usually connected with Retts Syndrome . Last month at the geneticist's office, we learned that Ben's gene abnormality has never been seen before. I don't thing they mean, just in their office. I think they mean ever, anywhere. This week, I was tested to see if I have the same abnormality. If I do, then "the waters are muddied," according to the doctor. It could mean that it is just an abnorma...

Sean turned five this week. Birthday boys and girls are treated like royalty at our house. On the morning of Sean's birthday, Ryan woke him early and took him out for breakfast before school. Ryan is ridiculously busy with his own school and any alone time with him is treasured. Next was my turn to treat the little king to birthday bliss. I spent the entire morning with Sean at school. I participated in a celebratory birthday ceremony in true Montessori style. After setting up the sun and calendar months in the center of a circle of classmates, Sean walked around five times while holding a globe. At the same time, I talked about his favorite things and showed baby photos he had chosen. For these few minutes he was the center of the universe. That night, Sean chose Domino's Pizza for dinner. We sang "Happy Birthday" and ate cupcakes. At some point during dinner, I asked him what was the best thing that happened to him that day. Ryan and I amusingly glared at ea...

Logan was sure not to get pinched with this green face. A family friend, BOB, invited us to a party held by the Irish Society of Charlotte. Ben loves him some BOB. I think they hugged for 10 minutes. Or maybe Ben wanted some beer.  As usual, Ben became a celebrity at the party and got to choose the winning raffle ticket. A young girl won $106! They taught us a jig - that's me with the jeans on. It was a fast paced dance, and it was fun. Ben was invited up with the band to help keep the beat. They under-estimated him and he almost took down the mics, speakers and music in one swift pull. Luckily I am fast on my feet while doing the jig. The band. The real dancers. Unbelievable. We visited the US National Whitewater Center to see if the water really did turn green on St. Patty's Day.  We saw a giant Leprechaun and I swear I saw a tiny one riding a moped...but no photo to prove it. LUCKY MEETING YOU At the Irish party, two different set...

This post could have been written many weeks ago, but I have not been able to get my head wrapped around it. I have gone through emotions ranging from disbelief, shock, guilt, optimism and then shock all over again. I was hesitant to share the news if it was untrue. But there have been enough people involved in this process that I think it okay to make it public. Ben can read . I mean really read - sight words, sentences and short paragraphs. We have not tested further than that yet, but I am certainly determined to see just how much he knows. It started again with the NOVA Chat (I swear I am not a paid endorser) and testing Ben on sight words. It appeared that he knew them all, even when I added ones that I used with Sean. The speech and occupational therapists asked Ben questions based on books and videos. A couple of times, he answered without anyone reading the question to him. A fluke, right? It happens a few times and you say, "What the hay, let's give him a sente...

Ben's former physical therapist sent this article about a new  Multi-Sensory Room  opening in Charlotte.  It is connected with Easter Seals/UCP and will be available to children who have sensory issues. There will be a fee to use the room. We may have to bring Ben here to check it out. I will write more about it then.

Logan came home a few weeks ago talking about a Class Dojo and I had no idea what he was talking about. He kept asking, "Can we do it for us - me, Sean and Ben?" He mumbled on and on about points and jobs. I shook my head a few times, mumbled back and hoped it would go away. While volunteering in Logan's class yesterday, I was able to see the Class Dojo in play and asked the teacher how to find it. Basically, it is a point system on the computer with cool looking monsters. Each child gets a funny looking avatar. Depending on what jobs, tasks or areas the teacher or parent puts in the system, a child can get points for doing something, displaying a certain behavior, etc. A reward for gaining a certain amount of points in a specific amount of time can be put in place. For Logan's class, when he reaches 20 points in one week, they get to do two less "works" (Montessori system) on the Tuesday following. Points may also be taken away. I am not sure how...