Thursday, October 31, 2013

You Meddling Kids

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."

Thursday, October 24, 2013

Special Olympics - An Excluding Experience

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 the ramp Bocce Ball event. None of the other children in his school are in wheelchairs so they all go to another part of the same park for their activities while Ben is left behind.

We are all too familiar with Ben's dislike for participating in sports, with his real interest in spectating. The interaction with his classmates, teachers and assistants are what he most enjoys. Except for an occasional visit from a teacher or old friend, we waited apart from his friends.

The Special Olympics program is, for the most part, run by volunteers and school staff, who have the best intentions and would not leave a child out on purpose. No one is there to be exclusive, mean spirited or hoard all the Gold medals. With that said, when your child or grandchild is left out, it still hurts, no matter the good intentions.

For me, another learned lesson. There are easy remedies, and I am already taking the steps to make them happen for future events.

Monday, October 21, 2013

Uncovering Ben's Strengths, Part 2

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 called me 15 minutes after we left to say that Ben did very well. He made it to the vocabulary list that required phonetic spelling for the proctors.

Then she called me a few days later to say that the preliminary results show that Ben's memory (after reading a story, they tested his recall) was in the "Below Average" range. Average IQ is 90-110, and Below Average is in the 80 range. Ben's receptive vocabulary was in the high 70 range.

The doctor also believed that his scores may be even higher because it is hard to get accurate results with the way in which they have to test Ben. They had to modify the test to fit for him. With a verbal person, they would read a story and ask them to recite all the things they remember. With Ben, they asked him specific yes and no questions about the story.

This is all very exciting. We still have another testing session in November. These results only verify what many of us already knew - this kid has a lot going on in his head. Now we will have doctor's recommendations about best education and learning styles for Ben in order to develop an educational plan that will support and challenge him.

Sunday, October 20, 2013

Uncovering Ben's Strengths, Part 1

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 had a Bob the Builder video pulled up on her computer. She also recommended a few things that she thought would interest Ben based on what she read about him and what I told her about his interests.

Rube Goldberg Machines - I did show Ben this quick video and he seemed interested in what they were doing. I emailed the company to see if they have longer videos of their contests. If the boys want to build one at our house, I think that would be great too.

Frigits - This is something we can get for the house relatively easily. They are not as exciting as the Goldberg machines though.

The doctor also shared a resource that I had not heard of before:

Do It at the University of Washington

This was the first meeting and the doctor did get to see a bit of Ben's personality come out - he gave high fives to the two young women proctors and deliberately did not give the doctor one. Ben did not complete any of the testing that day, but we scheduled a time to come out with the OT.

Saturday, October 19, 2013

Genetics...A Guessing Game

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 and occasionally steal pens and personal items out of pockets.

Friday, October 18, 2013

Just A Little Love

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

Wednesday, October 16, 2013

When a Cabbie and a Bicyclist Meet

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 been called in by several other people. The police had been dispatched.

All during this time, we were panicked. The yelling was loud, it sounded like multiple people were beating on one person and that person was calling for help. Ryan kept us quiet with the lights off and away from the door because he was afraid that they would try to get into the house. At this point, we could only hear what was happening, and we did not know if anyone had a gun or a knife.

As we were hiding out in our dark bedroom which is in the very back of the house, I heard Ben yell out. The noise had woken him up. Ben crawled his way past the doorway and made it to safety. I later set him up with a video and he was happy as a clam.

Finally, the police arrived. I say "finally" because it seemed like forever, but in reality it was 2-3 minutes. With the man yelling "help" repeatedly, the decision to stay or help was weighing on my soul. Choosing the life of a stranger over the safety of our own family was not one Ryan nor I were willing to make.

An ambulance and a fire truck arrived. We still had not ventured out from the back of the house, so we could not see what exactly was going on. I was convinced they found a dead body. (I do have a wild imagination.) Ryan went outside to see what happened, but was not given any information.

After about 90 minutes, the police knocked on our door. They told us that three blocks away, a drunken bicyclist put his hand through the rear window of a cab, smashing the glass. He took off and the cab driver followed him. The bicycler stopped at our house and ran to our front door. The cab driver grabbed him and dragged him down our steps, thus scraping the bicyclist's knee. I am not clear on this point, but one of these two men were calling the police while the other kept knocking the phone out of the other's hand. The bicyclist's injured hand spurted blood all over our steps and walkway.

The reason the police were knocking on our door was to tell us that due to liability issues, the fire department would not clean up the blood. Logan was with us listening to every word and when we finally looked past the officers, we saw the blood everywhere. Logan broke down crying. He had been a brave soul throughout the entire ordeal. It was a lot for a little boy, not to mention his adult parents, to take in.

With the police's declaration of not cleaning the blood, in my sleep deprived, scared out of my wits state, I said, "My husband has a power washer and it should do the trick."

The crime scene was cleared, everyone had left and with adrenaline still coursing through his veins, Ryan cleaned the blood from the porch, steps and walkway. A guy with bushy hair and beard with a busted hand and knee walked up to him. He apologized for the blood and was wondering if he could look for the eye glasses he lost during the fight. All Ryan said was, "The blood is the least of my problems."

A neighbor across the street sent a text to see if we were okay. They too were terrified and were hunkered down in their home.

We all agreed not to tell Sean because he never woke up during the night. The blood was clear and nothing else would have clued him into something strange happening in the middle of the night.

First words out of Sean's mouth when he awoke, "Did you hear all that noise last night? Some people woke me up. I thought it was a dream and then I took away the sleep and the yelling was still there." I asked if he was scared. "No." I think he rolled over and went back to sleep.

Logan told a few friends at school about the story. He said half of them did not believe him.

On Sunday morning, we saw who we think was the bicyclist riding around - we all chuckled.

We laugh about it now, but it was one of the most frightening moments in our lives.

Tuesday, October 8, 2013

Disney Policy - Magical?

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?