eSpecially Ben

Happy Halloween! With Scooby Doo and Shaggy after the Pumpkin Head Soldier,  the infamous line ran through my head,  "... and I would have gotten away with it, too, if it wasn't for you meddling kids."

Ben carefully rolled the red ball down the ramp without looking - a challenge he added to the event himself. His eyes were on the volunteer with the hot pink socks, thinking,  "Where can I get me some of those?" Then, his attention turned to the ramp and looked for where the ball might end up after his big push. Or he noticed the two cute teenage girls hanging onto his every move. Actually here is the real story: Ben participated in the Bocce Ball event only after waiting 2 hours and Grandma having to ask why her grandson did not get to have a chance.  Supposedly they had called his name and none of us heard it. Ben did not have a medal ceremony which will be a difficult conversation with the brothers. In their eyes, Ben's worth is tied to those medals. They have been holding out for a Gold far too long, in their opinion. Ben was actually excluded in more ways than not getting his name called today. Because he is in a wheelchair, he was signed up for

My mom came with me to Ben's next neuropsychology appointment. We spent a few minutes with the doctor while Ben went off with the two young women proctors and his OT. They also had the NOVA Chat. I was worried about how Ben would do - he had been up since 3am because of the crazy cab driver and drunken bicycle brawl the night before and performing on command is not usually one of Ben's finer moments. Ben's OT found us in the waiting room about 20 minutes into their session. She needed water for Ben because he had requested some. She said he was doing remarkably well, although they had to ask one of the proctors to leave because Ben's flirting was getting in the way of the testing. Ben lasted another 20 minutes, for a total of 40 minutes. The OT reported that he shocked the proctors who the week prior could not get anything out of him. Ben was able to tell them what words like bovine, marsupial, and oil can (thanks Bob the Builder)   all meant. The doctor calle

It will be almost a year since we started using the NOVA Chat with Ben. It has opened up our minds to what Ben is capable of learning and doing. Ben's neurologist has been intrigued by the device and Ben's use of it. In our spring appointment with her, she suggested we take Ben to a neuropsychologist for testing. I did not follow-up with this suggestion until  a few weeks ago and lucky for us, they fit Ben in immediately. I knew I was dealing with a different type of doctor when I received an email from her asking if we could talk on the phone about Ben. I was not available to talk because I was working crazy hours at a five day conference in California, so I referred her to  eSpecially Ben . I think she read it that night because she got back to me and changed her strategy: 1. We need to use the NOVA Chat for testing 2. We need to get Ben's OT involved 3. We need to do the testing in 30-60 minute increments, rather than the usual 3 hours At our first meeting, she

After analyzing several more pints of Ben's blood and little bit of mine, there are still no conclusive results to what genetic disorder Ben may have. Both Ben and I have an odd addition to our X chromosome, but since I also have it and show no delays and disabilities, then it may not be the cause of Ben's own delays and disabilities. However, Ben's neurologist, not geneticist, shared that sometimes a combination of chromosomal issues and other genetic abnormalities can be the cause of a disorder. During the summer, the geneticist ran a series of the newest genetic tests, ones recently developed in the past 5-6 years. I have not heard anything and assume there were no findings. I did get a $4700 bill that they assured me the practice would cover. I still stand by my diagnosis - Ben has his own special disorder, unique to him, one they will not find through tests or charts. And the disorder is characterized by sweetness, stubbornness and the ability to stump doctors an

Uncle Brian captured these moments last night and they were too good not to share.

At 3:00 in the morning last Thursday night, Logan ran into our room to tell us that teenagers were yelling outside our house. As soon as I woke up, I heard the yelling too. I quickly ran to the hallway and peeked out. I saw one man, certainly not a teenager, on our front walkway and a cab parked at the end of the walkway. The yelling and screaming was loud and frightening. I should mention here that our house sits about 10-15 feet away from the street. If you are on our walkway, you are very close to our front door, which is mostly glass. Sound penetrates it easily. Ryan woke up and we filled him in as I searched for a phone to call the police. The yelling got louder and someone started screaming for help. I was on hold waiting for a 911 operator. I tried another phone to see if my phone was broken - I had never heard of waiting for an operator. The other phone had the same results. After what seemed like 10 minutes, I was able to ask for police. The 911 operator said the fight had

If you have been holding your breath - here is the update on Disney's new policy for guests with special needs: Disney Update  (This is also another mom's blog - definitely a good read!) Did we really think that Disney would let us down?