Thursday, July 29, 2010

Grin Kids, Part 1

Last October, I applied for Ben to be accepted to the Grin Kids Disney World trip, sponsored by Grin Kids, a non-profit organization, coordinated through Ace & TJ, a morning radio show in Charlotte. The organization’s name comes from the hosts’ favorite saying, “You Grin, You’re In.”

Since 2000, Grin Kids has raised money each year to fund the children and their families who are accepted to go to Disney World. Their fund raising events include a "2nd Chance Prom", golf tournament, raffles and other events throughout the year. Ace is a member of the band, Charity Case, and all their profits go to the Grin Kids organization.

The children who are selected are terminally ill or are chronically handicapped and are between the ages of 5 and 12 years old. If you have the time, take a look at the websites for Grin Kids and the band, Charity Case. Both sites tell stories about amazing human beings who have taken on this mission in life to help children and families take a break from the sometimes difficult realities of life.

We will find out if Ben has been accepted in August. I will keep you updated.

Tuesday, July 27, 2010

Trailblazing on the 7th Race!

Not only did I run my first trail race today, I saved a life. The same type of turtle pictured above was crossing the street on the way into the US National Whitewater Center. Traffic was fairly heavy at 7:30am on a Saturday because of the race. The turtle's head, legs and arms were completely withdrawn into its shell so it really looked like a rock in the road. I passed it at first, then realized what it was. I hesitated, then thought of my boys and how we saved another turtle once while driving to the park and how they still talk about the experience. I did a U-turn, scooped up the turtle and placed him in the grass, far from the road. Hopefully, he was able to get his bearings after that frightening experience.

Back to the race - so different than the road races I have been running. Less people running, but most participants were athletic. On a road race, there may be people who will walk and run the race. This was strictly a running race. Luckily, before the race started, a man passed on some wisdom he learned on his first race - don't go to the front of the line. Since it is narrow and hard to pass, you have to keep a much faster pace with the leaders and you will wear out quickly. I heeded his warning and was one of the last to hit the trail.

Another thing that surprised me, but made sense after I saw the results, was that the race began about 1/2 mile before the Start Line (and Chip Time) so that the runners had a chance to thin out before the narrow trail began. Even with the 1/2 mile lag, a bottleneck formed and we were all forced to walk for several minutes. About 85% of the trail was super narrow and passing another runner was not safe. At times, people did stop to walk and if passing, I learned the common phrase was to say "passing on the left."

Overall, I loved the experience. Running in the shade of trees overlooking a river was amazing. Watching for differences in the terrain made it interesting. As long as I can find the time and a running partner (safety first when running in the woods), I will add running on the trails to my workout schedule.

Thursday, July 22, 2010

Use Your Imagination

On our last visit to NY, we stayed at my Dad's house. Ben was able to have his own bedroom on the second floor. We quickly realized that Ben could open the door and crawl out. Not being totally adept at climbing down stairs, this was not a great situation. We set up wood in front of the door so at least the noise of the wood falling would wake someone up, and we would rescue Ben before he would get to the stairs.

One of the nights, I went out with a high school friend. When I came home, all three kids were sleeping. Nona and Grandpa had laid down the law, gently, and everyone went to bed without question. My father was especially proud of himself because he devised a fail safe method to keep Ben in the bedroom. He wedged 4 large and heavy RubberMaid containers (2x2) in the doorway of Ben's room. The door to the room was open but the containers blocked the way out.

Before seeing this system, I told my father I had my doubts - Ben has a way of getting around things. Once I saw the setup and felt how heavy the containers were and how tight they were wedged in, I agreed that Ben was safe inside.

Next morning, Logan came into my room telling me that Ben was awake. Knowing that Ben could not get out, I figured I had a few more moments in bed.

Logan came back. "Ben's getting out."

Jumping out of bed, I found Ben perched on top of the containers sitting "criss-cross apple sauce" with a grin on his face. If I had a camera, it would have been perfect, but I did not want to tempt fate so I got him down from his throne.

I am reminded of the children's book, "We Are Going On A Bear Hunt." For each obstacle they encounter, the family chants, 'we can't go around it, we can't go under it, we can't go over it, then, we must go through it.' It seems Ben has much the same attitude when something is in his way.

Wednesday, July 21, 2010

Special Exposure Wednesday: Riding the Fire Truck

 Ben is sitting here with his brother and two cousins. The cousins visit this week from New York - exciting times!

Tuesday, July 20, 2010

My Dad

My Dad has always been a special person to me. He taught me how to throw a football, ride a bike and play Parcheesi and Monopoly. He was the Dad on the block who played hide-n-seek, kickball and woofle ball with all the neighborhood kids. He may never admit it, but he played Barbie dolls with me too. I have lived 12 hours away by car for a long time now and we have maintained our relationship through visits and lots of phone calls. Although he is great on the computer, he refuses to send an email. He'd rather pick up the phone.

When I started my blog, he became one of my biggest supporters, calling me to tell me how much he enjoyed reading my entries. Without being asked, he has helped our family emotionally, financially and physically. He understands the extra struggles we face daily and tries to help lessen the burden in ways that he can.

My Dad adjusted his role from grandparent to a typical child to one who has special needs. A visit with Grandpa means working on gross motor and speech skills. Whatever skill Ben is learning at the moment, whether it is climbing stairs, saying "drink" or learning to ride the tricycle, my Dad will make Ben work. When Ben was little, he would make Ben crawl across the dining room table. He is a natural motivator, building confidence while challenging his "student" at the same time. Ryan has often marveled at how skilled he is in playing, teaching games and interacting with our children.

On our latest visit with him, my Dad walked Ben around the track numerous times with the tricycle making sure Ben used his own muscles to get the wheels turning.

My Dad appreciates Ben's quirks, abilities, funny personality and even Bob the Builder. Of course, he loves Ben, and he is proud of him too.

Monday, July 19, 2010

Magic Marker Monday: Our Bountiful Garden

This is my husband's work of art and stress reliever - a garden full of sunflowers, corn, watermelon, squash, zucchini, jalapeno peppers, banana peppers, green peppers, okra, cucumbers and a renegade pumpkin.

See other works of art at

Thursday, July 15, 2010

Saying Goodbye

Over the past seven years, we have had so many wonderful therapists, caregivers, teachers and friends enter our lives because of Ben.

Desiree is one of Ben's physical therapists, and she is leaving her position next month. Her husband was offered a job opportunity in another state where they happen to also own a home.

Desiree  is a straight shooter who cares about her clients intently. She has helped us make decisions about walkers and tricycles. She introduced Ben to the TAOS. Desiree works Ben hard each time, but always in a caring and safe manner.

Saying good bye in this day and age is not as it once was. Desiree won't ride into the sunset never to be heard from again. We have Facebook, Twitter and blogs - we can stay in one another's lives, if even peripherally.

The people who have helped Ben along the way are almost like his own milestones. They take him part of the way on his journey and then leave him in the care of another.

Wednesday, July 14, 2010

Tuesday, July 13, 2010

Surviving Summer

This summer has taken some getting used to - I think I may have mentioned it here a time or two. In an effort  to create some sort of a schedule, we started renting Red Box Family Movies every day. Tonight the boys are watching Free Willy while eating popcorn. Last night it was Beverly Hills Chihuahuas. It has been a relaxing way to end the day and spend time with each other.

Another mom blogger recently wrote about how summer is a stressful time for parents with children with special needs. She mentioned how most other families lavish the thought of days filled with no schedules. For parents with children with special needs, it can be a challenging time.

We are fortunate to have a therapeutic recreation division within our county parks and recreation department. They coordinate an eight week camp for children with special needs. The schedule includes weekly swim sessions, field trips, music therapy and gymnastics time. The ratio for the camps with smaller children is almost 2:1. The camp director is educated for this special population and understands the value of changing activities often while providing a consistent schedule.

This summer, Ben is attending 6 weeks at this camp. He has made new friends and been reacquainted with old ones from past years. Ben's private therapists meet him at the recreation center for their sessions. And when I pick Ben up at 3:30pm, he is rarely ready to go. Luckily, his brothers get to stay and play for awhile on the indoor jungle gym.

Sounds delightful on paper, but the reality is we are in a mad dash in the mornings to get out on time with lunches and bags packed. The right equipment and gear needs to be ready to go and then we have to be somewhat on time because of field trips or therapist appointments. On some days, it feels like driving to and from camp is all I do.

Next year, I will be better prepared mentally, physically and emotionally, and plan some downtime with movie nights and popcorn. And is it "playing hooky" when you miss camp a time or two?

Monday, July 12, 2010

Magic Marker Monday: Decorated Vase

 Logan, our 5 year old son, designed this vase to give to his teacher on the last day of school. He used markers to decorate the glass, a bow to tie around the top and added small pictures inside instead of flowers.

Saturday, July 10, 2010

Cold Turkey

Since March 2009, I have been taking 1/2 of a Benadryl pill every night before bedtime. It all started that winter when we were horribly sick with colds, bronchitis and ear aches for months on end. Someone was always up at night. I got in the habit of waking at 3am whether someone needed me or not. I need sleep every night, at least 8 hours worth. I did one all-nighter in college using No-Doz and that was it for me - never again. If I did not get the studying done at a decent hour, well then it was not going to happen.

Anyway, I began taking the Benadryl every night. I did not need it to fall asleep because I am usually zonked by the time I get to bed, but I did need it to stay sleeping. Well, March 2009 turned into March 2010. I thought about stopping, but the fear of not getting a good night sleep would take over and I would pop a half a pill, which is 1/4 of a full dose. My chest would tighten when the thought of trying to go to bed without one entered my mind. A mild form of panic would settle upon me.

In May I had a physical with a new doctor. I asked if taking such a small amount of Benadryl at night would hurt me. My friend had mentioned that she heard it was connected to Alzheimer's Disease. The doctor was less than pleased with my pink pill habit and suggested Melatonin. I am a very good patient when not being stuck with needles and dutifully purchased the Melatonin. The Melatonin worked just as well, until a few weeks into it, I began to feel depressed. Not being able to figure out what was going on, I took myself off the Melatonin after reading that a side effect can be depression. I went back to my trusty pink pills. The depression along with my allergies, ceased.

Then just a week and a half ago, I was exercising on the treadmill at the gym while watching Dr. Oz. I am not a big fan of the scare tactics he uses to get the public's attention, but ironically it got my attention this time. The show's topic was about people addicted to sleeping pills. I am not saying I resemble the woman on the show - she was taking 2 1/2 pills a night - remember I was only taking 1/2 of a pill - but she said something that did resonate with me. She feared not being able to sleep. And that's when it hit me that the fear is what was making me take the pill each night, not the inability to sleep.

Dr. Oz promised that this woman would be able to sleep without the aid of the pills and would occasionally have insomnia, like most people do. So last week, I went cold turkey and have been off the little pills for over one week. I've even been awoken by children at 3am and still was able to go back to sleep.

All of us handle stress in different ways. Some use substances like alcohol, food, nicotine or drugs to manage their hectic, emotionally difficult lives. I learned a lot about myself through this experience. I joked about only taking 1/2 pill, which is 1/4 of a dose, but I was saying this to convince myself and others that it was okay to do what I was doing because it was just a little bit. Because I was being lead by fear, I could convince myself of anything. And that is a dangerous place to be. Once I figured out my real fear, I was able to make the change.

Friday, July 9, 2010

Addendum to July 1 Post

These last weeks have been harried - and with school out and camp in - posting to this blog has been tough to do. However, I did get some posts out last week - one of my favorites being about Ben petting the goat at an ecology center. I wrote about what a great job he did using gentle touch.

You can call it Perspective, Irony or just Life - but the day the post came out, I got a call from the camp director letting me know that Ben had bitten another child. The child was fine, Ben was given timeout. The incident was handled well by the camp staff.

But, I guess we have some more work to do.

Thursday, July 8, 2010

Managing the Seizures

Three months ago when the word "seizure" entered our everyday vocabulary, I knew little about the term. I cannot say that I understand too much more now - there are so many different types. Most everyone thinks about the "grand mal seizures" that come with convulsions, biting the tongue and horrendous side effects. Ben's seizures are commonly known as "silent seizures" or Absence Seizures. Just falling forward marks a seizure for Ben.

For Ben, if I understand the information from the neurologist, we need to manage his seizures. This involves finding the correct medication at the right dosage without too many side effects that prevents the seizures from happening. I am not sure how long it should take to figure this all out, but Ben is still having seizures at home and at camp, during therapy or while sitting at home. He has had multiple bumps to the head and just this week, a bad skin scrape after a face plant to the concrete.

The doctor is responsive and changes are being made. But of course, I wish for a quicker fix.

Wednesday, July 7, 2010

School's Out

Ben has been a very happy camper since school's been out!

See other photos at

Tuesday, July 6, 2010

12 Years

Monday was our twelve year wedding anniversary. Throughout the weekend, we looked at each other and laughed at how we have been together for so long - add 4 years of dating and 3 years of friendship prior to that.

Ryan and I are VERY different people. We bring "the opposites attract" to a whole new level. Over the years, we have moved toward the middle, but it has been a long, slow and sometimes painful process. We may be polar opposites in the way in which we go about doing things, but we have the same values about almost everything. Our views on how to spend money, raise children and other major issues are similar.

As parents, we have complemented each other with raising Ben, supporting one another when needed. Ryan is the crisis handler and I am the administrator. Ryan accompanies Ben to most medical procedures and I advocate for services for Ben. For us, the way to manage Ben's special needs has not been a cause of marital stress. Luckily, we have been able to support one another in the emotional stress that accompanies raising a child with disabilities.

In marriage, every day is work. Ryan and I have worked hard to get where we are today. And we still can do better and will continue to try.

Thursday, July 1, 2010

Furry Friends

Ben started "pet therapy" several weeks ago with a neighborhood dog named, Kingston. Several people asked me the purpose of this therapy. My answer has been that we hoped to help Ben use a gentle open hand when touching animals and humans. Other than that, Kingston would be a friend without expectations, work and goals.

The photo above is proof of the changes in Ben. See the open palm and the calmness in Ben's demeanor. In the past I would not have been able to take the photo in fear that the goat would have been terrorized by Ben's grabbing and pulling.