Thursday, March 28, 2013

A Little Too Cozy with My Genes

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 abnormality that has no significance. Or it could mean it affects him only. Hence the "muddied waters" analogy.

If I do not have this abnormality, then this finding could be significant. It could also lead to more tests.

There is an eight month wait for appointments with the pediatric geneticists in Charlotte. They saw us in one month and now we have another appointment in May. They also paid for my genetic testing because insurance denied the service. I think Ben may be an interesting case for the doctors.

I am trying to "Trust the Process", go slow and talk with Ryan through each discovery. It may lead nowhere or it could lead to something. We can stop the process at any point also. Just because a doctor suggests a test does not mean we have to follow-through with it. Weighing the benefits for Ben and our family and considering motives behind testing will come into play as we move ahead.

In any of these cases, we keep on doing what we are doing with Ben...make him work hard and love him lots.

Saturday, March 23, 2013

Getting All The Glory

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 each other over the top of the boys' heads, each knowing Sean would pick the special time we had with him. Nope.

"Talking to Uncle Brian on the phone."


We cannot compete with cool Uncle Brian, the NYC Fireman, the one who wrestles and gets rowdy with the boys. 700 miles away, but with one phone call, all else is forgotten. Oh well!

Sunday, March 17, 2013

The Luck of the Irish

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.

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.


At the Irish party, two different sets of parents introduced themselves to me. They have adult children with special needs and wanted to meet Ben. Always great to talk with parents who have been up, down, over and through the woods. Their perspective is like looking through a viewfinder with a completely different lens.

While at the USNWC, Ben wanted to walk around. There were probably over 10,000 people at this event and who did we see as Ben made his way over to the hill...his physical therapist from school. Nice way to show off his stuff!

Sean's final words of the day, "I love St. Patty's Day. And I did not get pinched once!"

Wednesday, March 13, 2013

Game Changer

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 sentence to read on his own."

So I typed out: The man wore a red hat. Then we showed the screen to him, asking him to read it.

We asked Ben what color the hat was and gave him four answers to choose from. The answers only had the words, no pictures to go along with them. He got the answer correct. Again, it could be coincidence, after all  there is a 25% chance of getting the right answer.

Each night, we made the sentences more difficult and added another question. I even used some of Logan's 2nd grade lessons as samples. Ben continued to answer them correctly at 75-100% accuracy.

We have a wonderful group of people working with Ben, and I think they have made it a personal challenge to come up with tougher sentences and paragraphs for Ben to read. They have not stumped him yet.

Today, the occupational therapist worked on sight words, months of the year, body parts and then moved to actual spelling words out. He demonstrated his ability to read and spell.

To Ben's teachers over the last 7 years - Ms. Edwards, Ms. Davis, Ms. Hoard and Ms. Christenbury: Ben has been taking in everything you have taught him. Your hard work, determination, love and caring has made a huge difference in his life now and will have an incredible impact on his future. Your belief in his ability to learn and understand has made his world larger. If this is not an example of a true teacher, I am not sure what is. Thank you from the bottom of my heart for not only teaching my son, but me as well.

Monday, March 11, 2013

Multi-Sensory Room

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.

Tuesday, March 5, 2013

Class Dojo

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 that works. I do get a report from Logan about who in his class is in the negative.

We now have our own Class Dojo. It is free, easy to setup and even has an app for the phone. Perhaps you too want a Dojo in your life...