Wednesday, March 28, 2012

A Little Help From Our Friends

A local farm, turned county park, offered a special event featuring the Civil War. Volunteers dressed as military personnel, farmers, craftsman, acted out battles and answered questions. It was family friendly and the kids were welcomed to try out each experience.

Ben was content at watching everything going on around us. Logan and Sean were mesmerized with the machine that removed corn kernels, and they literally spent most of their time getting the heads of corn from the shed and then either by hand or machine taking off the kernels. For some reason, unknown to me, this was an exciting activity for them.

Ben and I visited the cows nearby. A boy of about 10 or 12 came up to us and offered to help Ben feed the cows. The photos you see are of Ben and this boy. Notice how the boy gently uses a hand-over-hand approach to help Ben feed the cows.
The boy suggested that Ben may like to get the kernels off himself using the machine. This kid was so kind and thoughtful, I agreed.

While waiting on line, the boy ahead of us offered his corn for use with the machine. He thought Ben's might be too small. It turned out that this boy was the other boy's younger brother. 

Ben experienced a bit more than the sand papery feel of a cow's tongue and the taste of corn kernels that day; he was treated with dignity and respect, friendship and kindness. These boys have a special gift. I am glad we met them and that they shared their day with Ben.

Monday, March 26, 2012

The Wildest Brother

In The Wildest Brother, a wonderful story about siblings by Cornelia Funke; the main character happens to be named Ben. Throughout the book, little brother Ben, protects his sister from imaginary ghosts, goblins, bears and any other creatures that may attack a big sister without warning. Ben does a great job during the day of saving her; however, when night comes, he is quick to jump into bed with her and let her take over the slaying of dragons and other things that go bump in the night.

We read this story a few nights ago and since then, Logan has been sleeping in bed with our own Ben. Not sure if the book prompted this arrangement and if it did, I am unsure who is protecting whom. Asking these questions would surely ruin the moment. And I certainly don't want to do that.

Thursday, March 22, 2012

Feeling a Little Nostalgic

This little buggy is really too small for any of our boys, but they still find ways to play with it. When they were small, we had three like it and most of the time, these cars were inside the house. The boys played in them all the time.

This one has been relegated to the outdoors, part of my several step program to get toys to the give-away pile. Whenever we are outside, Ben has his eye on this car.

Today, Ben was determined to get inside. Since his feet and legs did not fit, he closed the door and let them hang out. He did all of this without assistance - from getting into the driver's seat and maeuvering his body to closing the door and getting his feet over the side.

Getting out was a different story.

The Good Ol' Days

Monday, March 19, 2012

Defining Moments

In Mr. Warmuth's high school social studies class, I raised my hand and asked if Mayor Koch was the governor of New York. I don't remember Mr. Warmuth's response, but I will always remember the years of ribbing I received for that one. For awhile, I may have even been known as "the girl who asked..."  And I know the question was a contributing factor to a nickname.

In my defense, at the time I asked the question, Mayor Koch had been in office throughout my entire childhood and his first name was barely ever used. Even now, I really have to think hard about his first name...Ed. Yes, Ed Koch.

Several weeks ago Logan asked me to teach him how to read a clock. I am not a great teacher, but this seemed like a simple task, one I could handle. Heck, I'd been telling time for quite some time now. I was already feeling the pride of knowing I taught my son how to read a clock.

I cracked my knuckles and dug into my explanation. I told Logan about the two hands on the clock - the long hand told the hour of the day and the short hand told the minutes.

Logan was quiet during my lengthy lecture, but after awhile he looked up at me and said, "Mom, I don't think that's right." My reaction was, of course it's right. Then doubt set in. I looked back at the large clock on our kitchen wall and traced the long and short hands with my fingers and realized I was telling him the exact opposite. Needless to say, this will be one of those family stories Logan will want to share for decades to come. However,I do think he will remember the hands on the clock.
Last night (and with little distance from my last foible), we were eating pasta with pesto sauce. Logan asked what it was we were eating. I told him, and added that his Dad and I had pesto for the first time on our trip to Italy many years ago. Logan seemed interested in our experience, asking questions about the foreign language.

Thinking that this was a great opportunity to talk about language and culture, I said, "When we said hello to people, we said, Bonjour!" As soon as the words flew out of my mouth, I realized I had said something wrong. I had taken French for six years in school, but my brain was having a hard time processing my mistake. Then it hit me.

More importantly, I realized my husband was in the next room. And he was listening.

Our stories define us. Not just the proud moments of victory, the fantastic stories of courage, but the little life moments. Whether we laugh, cry, hide or smile with the memory, defines us.

My Dad jokingly says he has a book of all my step mom's sayings. Francesca was born in Italy and sometimes she confuses English words and phrases. The result make for very funny stories, especially retold by my father, who can embellish with the best of them. His tales make us all smile, but more importantly his stories are a way for him to mark a time and place - a vacation, a family gathering, a trip to the store. I wish my Dad did have it all written in a book, I would read it - a compilation of life stories told with humor and love.

Saturday, March 17, 2012

More Than Just Irish Dance

This is a re-post from 2010.
The night after St. Patrick’s Day long-time, dear friends of ours invited us to their ten-year old daughter’s exhibition of Irish Dance at a local college. Logan and Ben were my companions on this adventure – an adventure because the event was a good 25 minutes away and did not begin until after 7pm. And did I mention it was a school night?

Ben sensed we were going somewhere different. Before we got out of the car, Ben’s arms and legs were moving a million miles an hour. This was a sure sign he was excited and happy to be out and about.

Taking Ben somewhere new comes along with a lot of worry – Will I be able to get Ben easily to the location? Will Ben behave? Will he make his noises? Will we have to leave early because he’s not enjoying it? How will others react to him? I usually push past the worry, hope for the best and fly by the seat of my pants if needed.

When things go well, an emotion I have not been able to label, takes hold of me.  It gets me almost every time when we go somewhere and Ben truly enjoys himself. I always tear up.  I feel an overpowering sense of pride for Ben. I feel happiness for him when I see he is happy, engaged and content.

Some of my tears express sadness – Ben’s involvement is limited, kids stare or make awkward comments and some of it is just the continuous cycle of working through the emotions of raising a child with special needs.

A big emotional investment goes into taking a child with special needs out. That’s probably why many people remain at home. It’s safe. But when you do take the risk – it pays off. It can pay off big, like it did that night.

First, the logistical worries were immediately relieved with the help of my friends. They met me in the parking lot, found a space close to the entrance, and they also saved us seats in the front row.  And I had not even asked for any of this help. Second, their daughter welcomed Ben like she would any kid. She said, "Hi Ben." Seems small, but means a lot. Finally, the Irish Dance instructor offered Ben a sign to hold up during a demonstration of several different jigs and dances.

To say that Ben LOVED the event would be an understatement. He took in the musicians, the dancers, the college students milling about, the worried parents scurrying around. He took it all in and did not want the distraction of food or a friendly face to get in the way of his observations. For the most part, Ben was silent for the two hour presentation. His attention was on the event and all its beautiful parts.

And with me sitting beside him silently shedding my tears, Ben became a part of it all in his own way. Perhaps this emotion I am unable to label is love. An overwhelming love for this unique little boy who has an appreciation for Spud, fish sticks, milkshakes and now, Irish Dance.

Thursday, March 15, 2012

More than a Disease

Our family worked with an organization that provides a fabulous service for children with special needs and their families. Once we were involved directly with them, I noticed that they describe each child served, by their disease or disorder. The public profile was 90% about the child's affliction. When I saw Ben's profile, I was really sad. He was listed as Epileptic with an Unknown Genetic Disorder. An Internet generated description of Epilepsy was included. A photo of Ben, his age and hometown were also listed. The many people who looked at the website would not see Ben as a person who likes to swim, play with his brothers, be outdoors and watch Bob the Builder. They would see a poor child who is handicapped and needs help.

I emailed our agency contact and suggested they add some other facts about each child - what is their favorite food, activity, movie, book, etc. The questions and answers would depend on the child's development, but it would give a more rounded view of the child. I offered to follow-up with the families so this would not add extra work to the organization.

It was met with resistance and even strong emotion. I was told that their process was successful and  they were not changing it since it worked well in the past. Looking back now, I should not have emailed my suggestion. I should have called or met with the person directly. Email communication can be misleading and easily misconstrued. I think my suggestion was taken as a personal attack, when I only meant to offer a helpful idea.

In most of the places that Ben receives services, organizations use a person-centered approach. This means the person comes first before the disease. For instance, rather than saying "the disabled child", I try to say "the child with a disability." Language is powerful and if we can change a few words around so that someone is seen in a different view, I am all for it. Person-centered approach also means that agencies ask about what Ben likes and dislikes, what are his strengths and weaknesses, what makes him happy, sad and what are the best ways to help him in a tough situation. Knowing these personal items about Ben help people get to know him and see him as a person and not as a representative of a disease or disorder.

There is a lot more to the person-centered approach and I listed a few websites below to give you a more detailed explanation. The items I mention are only the tip of the ice berg - the person-centered approach is meant to give the individual power and control over decisions, plans and life.

I did not succeed in educating the person in the agency who did not want to change their procedures. I did make contact with another person in the agency who agreed it was a good idea. I relied on them to bring the idea in front of a larger audience. I will not know if changes were made for several months. The impact this organization has on a large audience is huge - they may not realize they shape the way our kids are seen, but they do, intentionally or not.

* If you have noticed I am being vague, you are correct. I do not want to call out this organization. They do wonderful work and have many volunteers who help. The heart of the organization is in the right place. I only want to raise awareness. People with disabilities can be represented as individuals with needs, wants and dreams who happen to also have a special challenge in their life. We are all learning, and I am hopeful that education will help change come about.

Tuesday, March 13, 2012

Power of Communication

We are in the process of selecting an augmentative communication device for Ben and a speech language therapist (one of her hats) sent us this video. I know I have been YouTube crazy lately, but this one is worth it.

And I applaud the mom for the way she handled the situation, saw the importance of what occurred and shared its powerful message with us.

Sunday, March 11, 2012

YMCA Video - Ms. Myrtle's Take

This is Ms. Myrtle as she talks about Ben. She starts talking about him toward the end of the first segment and finishes up in the second. It is worth the time to listen.

Thursday, March 8, 2012

YMCA Video

Our local YMCA asked us to be a part of a video to help with their fund raising efforts. There are a few more segments before and after us - I may try to post the part with a very special person talking about Ben. For now, you can see this.

Tuesday, March 6, 2012

Bound to Do the Job

Every six months Ben is measured for new ankle foot orthotics - AFOs for short. The process can take 30-45 minutes depending on how wiggly Ben may be that day. On this day, Ben decided he was going to fight Steve, our long time orthotist, to the death. In the end, we won, but only because I realized we could lock Ben's foot down in his chair while Steve wrapped the other one. Ben lost leverage to push back and some dignity since he was beat.

First, Steve put an open toed sock on Ben's foot. After the rubber yellow band was put in place the entire leg and foot, from the knee down, were wrapped in this very wet tape.

Ben's foot remained in a specific position to get the correct cast. Once the wet tape dried in 5 minutes, Steve cut off the cast using a special scissor, running it down the rubber yellow band, so as not to cut Ben's leg.

Here's Sean pulling out the sock that was underneath. It was not needed anymore.

The final cast was a good one, despite Ben's best efforts to foil our plans. Luckily Steve is patient and can predict Ben's antics. Next time I will come prepared with a Bob the Builder DVD...which I usually bring, but forgot this time.

The casts for the left and right feet are used to make AFOs from plastic material. In about two weeks we will return for a fitting and Steve will make adjustments to the padding and toe length. Ben will get new shoes and socks also.

And in six months, we will do it all over again.