eSpecially Ben

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h...

Ben and his almost two year old brother, Sean, share a special bond. For one, they both LOVE mashed peanut butter and banana for any meal and Bob the Builder on the DVD. Ben and Sean have a high tolerance for pain. Sean likes to help Ben out, whether it be with walking, eating, drinking or standing up. Ben tolerates all the help Sean gives without trying to bite, pull hair or push him away; treatment not all people receive. It will be interesting to see how their relationship develops over the next few years.

Over the past few weeks, Ben has had testing, evaluations, IEP (Individual Education Plan) and progress meetings to either determine his developmental level or discuss improvements he has made in a specified time period. I have been thrilled with the progress he has made and the new goals set for him. The psychological tests I have completed feel strange to answer because so many items do not relate to Ben because he does not talk or have typical physical abilities. The questions do not seem to apply to him. But he needs these tests in order to receive aide, so I complete them and hope for the best. Testing and evaluating are all part of life - and in truth, I like to have specific documentation outlining goals and progress. But there are other times when Ben has blown me away with things he has done that are not measured on a Lickert scale or answered in a question on a test. Those are the times when I give Ben extra credit. At 1:30am, Ben woke up for a drink. As I was sitting...

As soon as I took this out of Ben's book bag, I smiled. I saw Gene Kelly twirling around in this artwork.

While I was reading to Logan, I left Ben and Sean to their own devices. Ben was in the library watching his usual Bob the Builder video and Sean was just hanging out. When I came back about 20 minutes later, I noticed Sean sitting in front of Ben's second bowl of oatmeal and it was almost empty. I watched as Sean got a spoonful, climbed down from the chair, walked across the hall to Ben and fed the oatmeal to him. He did it two more times until the bowl was empty. He must have been doing it the whole time I was away. Can't even use words to describe how I feel when I witness this type of understanding, love and caring, especially from such a little guy. Sean will be two in March.

  On Mondays, my husband is at school well past the boys' bedtime. In order to make those evenings fun (and help me cope), we have "Three Musketeer Mondays" - the boys eat, bathe and then watch a movie before going to bed. Check out other photos at Special Exposure Wednesday .

Free valet parking, a colorful gown to wear, Bob to the Rescue on the TV, warm towels for the body and drugs to numb the pain - all at the special emergency room for children. It all started on Saturday morning. As we walked into the gym at the YMCA, Ben abruptly sat down to watch a volleyball match. Not wanting to be late for swim lessons, I hurried a reluctant Ben to the pool. He'd never seen a volleyball match, let alone one played by teenage girls in very short shorts. Ben had a fantastic swim lesson - the instructor let him maneuver along the edge of the pool alone using his arms to reach the steps, about 5-6 feet away. This was hard work for him and a big accomplishment. The volleyball match was still underway as we left the pool area with me holding Ben's hands. He led me to the game, let go, plopped down and started crawling quickly to the bleachers. I told him he had 5 minutes to watch. Ben tried to climb up on a random man's pants to get a better look. I...

Ben brought this little guy home from school. His body is laminated and two slits were cut on the bottom for his feet to be attached. We've all fallen in love with this cute lizard, or is it a chameleon?

Ben awaiting his ABR. Based on an ABR ( Auditory Brainstem Response ) Ben had when he was 2 1/2 years old, we were told that his hearing in his right ear was poor - he could not hear anything below 90 decibels . Regular conversation is at 55 decibels. With good hearing in his left ear, he could compensate. When I found the new ear, nose and throat doctor's office last summer, I decided to retest Ben's hearing. After initial testing, it seemed that Ben's equipment - ear drums, etc. - all worked well. A sound booth test is hard to do with Ben because he is not able to speak or point his answer. Another ABR was the only alternative. Ben's ABR was done yesterday. In order for the audiologist to perform the test in her office, Ben had to be sleep deprived the night before so that he would quickly fall asleep with a mild sedative. My plan involved keeping Ben up until 1am and waking him at 6am. My friend and I brought Ben to a 9:30pm showing of Avatar , and kept him aw...

  We saw Ringling Brothers, Barnum and Bailey Circus recently. We are not sure if Ben enjoyed the circus or the popcorn more. Lucky for us, popcorn refills were free!

When Ben was three, we started using a Picture Exchange Communication System or PECS. It is a system used widely with children with Autism. Ben has not been diagnosed with Autism, but we still find it quite useful. PECS is a augmentative and alternative communication device, used by people with special needs. It involves using pictures and symbols to communicate needs and wants. A longer and more in depth definition and history of PECS can be found at this Wikipedia site . To start, you need a large three-ring binder (about 3 inches wide), rolls of Velcro (more than you expect), hard plastic dividers, access to laminating machine or self-laminating sheets, scissors and camera. We use the following categories within the PECS book: Food Daily Activities Toys Outdoor Activities Places People Media (DVDs, books, music) Self-Help Activities The categories help us find the photos fast and return them to their correct location for use the next time. It will also help you to de...

Ben, age 6, made this creative flag at school. The stars are made with mini-marshmallows. I was able to stop certain members of the family from eating the marshmallows after I told them they were attached with glue.

Several years ago, Ben received a touch screen monitor from an assistive technology organization. Ben found ways to take apart the computer, eat the wires and throw the very light monitor onto the floor. When we tried the programs with Ben, his focus was more on how to eat, taste and destroy the components of the computer, rather than on the actual activity. After looking for a desk that would serve Ben's needs and not finding one within our budget, I asked my husband's father if he would consider building one. Always up for a construction challenge and helping his grandson, he said yes, without really knowing what he was getting himself into. We emailed back and forth drawings and designs and finally came up with something we thought would work now and grow with Ben as he got taller. With the help of his long-time friend and his woodworking workshop, Ben's grandpa built an impressive desk. The desk features a locked cabinet for storage. Ben is able to g...

While it seemed like everyone else in the country was getting snow in December, we remained cold and rainy. This past weekend, the snow finally arrived. With not quite enough snow to bound down hills, Logan glides down the slide - the southern way of sledding.

At Christmas I received a card from one of Ryan's cousins. Inside the card was a 4x6" magnet with the title, "101 Ways to Praise A Child." It lists those 101 ways beginning with "Wow" and ending with "I Love You" with 99 more in the middle. In my mind, I thought, "What a wonderful gift to add to your holiday cards." Praise was a very important part of my growing up - my parents were heavy on the praise and I understand the value and impact of the special words parents can share with their children. Then I read the card. This exact magnet had been on her fridge while her boys were growing up. Now that they were mostly grown, she decided to pass it on to me. Talk about "Wow!" Let me add that this cousin and I have met just a few times at family reunions and funerals. It has only been through Facebook and this blog that we have developed a relationship. The support from her is wonderful. I feel like I have an extra cheerleade...

Cooper River Bridge Images   I asked my good friend to put together an exercise plan for my March race over the Cooper River Bridge in Charleston. It is a 6.2 mile run with a big hill so I want to be sure I can finish and in the time I have set for myself, under 60 minutes. My friend is a former Ironman participant and a triathalon trainer for the local YMCA so she is more than qualified to put something together for me. In fact, it was with hesitation that I asked. I know that whatever she put together would be serious hard work. Here I sit on the first day of my plan, psyching myself up for me strength exercising and 3-mile run. There's ice and snow on the ground and I must motivate to get to the gym. Yeah, there's no way I'm running outside. I am not hard core. But I will drag my sorry self to the gym...

Ben, age 6, came home from school with this wonderful macaroni man made from dry macaroni. My husband and I were curious of Ben's actual participation in the creation of this masterpiece. I had the opportunity to ask the teacher about this pasta person, and she said that Ben had to pick up the noodle from the table and give it to the teacher, then she did the rest. Sounds good to us - Bravo!