Thursday, November 21, 2013

Typing 101

After 45 minutes of a work session, Ben's new and highly competent speech therapist, Jayne, gave Ben his first opportunity to use the key board on her iPad. This is what he typed:


I am, ironically, speechless.

Friday, November 8, 2013

Love Love INC

Love INC's mission

Last night, we had the wonderful opportunity to attend Love INC's Celebration Dinner. Love INC coordinated the building of Ben's ramp this summer. Unbeknownst to the lead carpenter for the project, Steve; he was receiving a special volunteer award at the banquet. We were invited to sit with Steve and his family and also introduce Ben to the guests before they sprung the award on Steve. 

Steve with his wife, Ann and mom, June.

In the end, Steve was surprised, but with Ramp It Up! staff coordinator Keri, Steve's wife and even his own mother in on it, he had no chance. When he sat down, they quickly hid the event program from him which had his name listed as an award recipient.

After Steve received the award and sat down, I think his first words were, "I am going to get you back." Of course Steve was joking, but he is not the type of person to want his efforts flaunted in front of 300 people. He does what he does because it is his calling. Steve has only two rules for working with groups that build ramps: (1) Wiggle your 10 fingers now, before we start, and you should be able to do the same when we finish the project, and (2) If you are not here to have fun, you may please go home. 

Steve's big heart, enormous dedication and faith, genuine love for helping others combined with great coordinating and building skills make for an unbelievable volunteer and role model. Once again we are blessed to have met this person through Ben.

Although we were there for Steve, there were a few other people recognized at the banquet. Their stories were told as well. Each one of them had an important reason they started their volunteer project.

One woman told how she had difficulty conceiving a child and when she finally did welcome a little boy into her life; she became aware of how hard it was to be a mom despite the resources she had at her disposal. She came to the realization that many mothers are not as fortunate as she - no family support, no partner, no ability to get diapers or wipes and sometimes eviction is imminent. With this knowledge, she started a program to teach classes monthly for new or soon-to-be moms. She has helped almost 300 moms thus far.

Another woman told of how although she was having a great time in her Bible study class, the group was not "doing" anything. She went home and thought and prayed about what the group could do. 

At this point in the program, all the speakers had been phenomenal. Each one with incredible stories, making me laugh and cry. This specific woman in front of me was young, attractive and well dressed. She was introduced as just having gotten married two months prior. In my eyes, I had her pegged based on what I saw and what was told to me in the short introduction.

The woman continued her story about her quest to find something meaningful for the Bible study group to do. "Remember when..." is what came to her mind. With tears in her eyes, she shared with us that several years ago, she and her four children, were in a position that she could not afford toilet paper. And with remembering this, the idea for a project came to mind - provide personal hygiene items for families who cannot afford them. So simple a project, but with a huge impact. This woman shared a few stories of people she has since helped that appreciate the shampoo, toilet paper and other essentials most of us take for granted.

On the car ride home, I told Ryan that I never imagined that people in this country would have to go without toilet paper. I had never considered this. It is obviously not a fun thing to think about, but it opened my mind to what other people go through in their effort to survive and provide for their families.

* My recollection of the people and their speeches pales in comparison to the real thing. The stories were heartfelt and genuine. Each volunteer dedicated to sharing their time and talents with strangers, and they gained more than they gave through the experiences and the people they met along the way.

Saturday, November 2, 2013

Sleepless in the Carolinas

Not sure if my itchy Zombie head or Ben's screeching kept me up most of the night following Halloween. I took a shower at 4am to relieve the itching (Note to myself: Shower after a Zombie night) and when I came out, Ben seemed quieter. I did not dare hope he was asleep, but at least quiet for a bit.

For many years now, Ben wakes anywhere between midnight and 3am and does not go back to sleep no matter what we try. His prescribed sleeping pill and melatonin have absolutely no affect on him on these nights. Even if we increase the dosage based on doctor's recommendations, Ben is unable to sleep.

I have not charted it, but my best estimate is that it happens about once a month to every six weeks. It could last two or three nights in a row.

It does not seem to be affected by what Ben eats, change in routine or amount of physical activity. All in all, it does not influence his behavior or abilities the next day either. After a night of no sleep, I have had the teacher tell me he has had a great day, and sometimes she has said, he has had his best day yet. Certainly, he does not take after his parents in this area.

Ben's behavior during this wakeful time is happy and active; he may crawl around the house or he may stay in his bed and watch a video. If he is feeling mischievous, he will crawl into bed with Logan. No matter what, he is loud. When he watches a Bob the Builder video, his laughter is almost maniacal. He cackles like he is having the time of his life.

When I am not corralling him to his bed, making a smoothie or changing a pull-up or video, I try to catch short naps. His jolts of laughter in a very quiet dark house are enough to wake the dead, but fortunately, brothers and Dad usually sleep through it all.

We are not sure what this sleeplessness is caused by - seizure activity is my best guess. It would be almost impossible to schedule an overnight EEG during one of these times unless we were certain of a pattern. I did write in my calendar the date and times he was awake this last time. Perhaps if these bursts of energy are caused by seizures, then additional medication could be given to him on these nights.

A solution to this would be wonderful because after two or three nights of this, I don't just play a Zombie on Halloween, I become one of the walking dead for real.

Friday, November 1, 2013

Wheelchair Basketball

Last weekend we found out about a local wheelchair basketball tournament in an interesting way. My mom and I were having dinner out, and we noticed a table of people who were mostly in wheelchairs. We were leaving at the same time as this group and because I was curious (and nosy), I asked one of the people if they were part of a team. Lo and behold, they were the Atlanta Wolfpack Wheelchair Basketball Team and were here for a tournament.

The group was open to answering my questions about when and where they were playing. They whipped out the schedule and said there were games the next day.

We knew the kids would love going so we made it to a couple of games the next day. We saw the Carolina Tarwheels beat the Atlanta Wolfpack, and then Atlanta played the Fayetteville Flyers. We missed our home team, Charlotte Rollin' Bobcats play.

One of the Tarwheels players thanked us for coming and explained the rules of the game. We learned that there is a classification system and each athlete is given a specific number based on their injury or disability. For example, an amputee who has use of their abdominal muscles and a larger range of motion will be assigned a higher number. A person with a spinal cord injury will have a lower number based on how high their paralysis affects them.

In order to balance the teams, the total number any team may have is 12. This number is achieved by adding up the individual athlete's classification number.

The game was fast paced, rough and tense, and we had free front row seats to it all. At least 3 times, we saw wheelchairs topple over, usually because the player was aggressive. Once we realized it was a normal occurrence and usually caused by the player himself, it was not quite as alarming.

Ben was interested in the game the entire time, as long as we kept a constant flow of food and drink into his belly. (I think he is going through a growth spurt.) Being on the gym floor made it very exciting. Balls came at us, players barely missed us and refs asked the boys if they wanted to throw the ball in.

These teams play 50-60 games a year and I am sure we will catch another one soon!