eSpecially Ben

Will post more photos later but wanted to get this out tonight. Ben's counselor sent this to me. It was taken right after he went down one of the big inflatable slides at Rainbow Camp. We may even have video of the event.

From the backseat of the car, the question "Mom, what's your weakness?" was thrown at me. My first reaction was to figure out from where this question was coming. Then I remembered the Superheroes, Comics and Star Wars books, toys and movies at our house. Each characters' weakness is key to their story. Then I responded with, "I am not great with crisis." Of course, that answer was met with a "What's crisis?" I explained that when unexpected drama that especially included blood, guts and gore entered a situation, I needed assistance. They asked about their Dad's weakness, and I told them that he would have to answer for himself. Rather big of me, I have to say. The boys talked about their own weaknesses and then we discussed how important it was, in life, to understand your own weaknesses - know what you are good at and know what things you may need help with. My brain pondered this topic all day (and still keeps going) - What are

tight to your perspective, or try a new one. I was not around when this was taken so when it popped up on the screen when I was downloading photos, I had to stop for a moment to collect myself. Then I noticed the brakes on the big wheels. At first glance it looks like Ben is taking the ride of his life. Brakes or not, isn't he?

As of March 2012, hotels were expected to comply with a set of ADA requirements. The pool and Jacuzzi, as well as bathrooms and other areas must be accessible. Many had a hard time meeting these requirements and a 60-day extension was given to the hotels. I fell into this information after booking a room through Priceline . After I booked online, I noticed the hotel's website mentioned ADA so I called to ask for a room with an accessible bathroom. Usually a handicap room means extra space in the room and bathroom. The hotel staff explained that I was able to get two adjoining rooms for the one price I already paid through Priceline. The room with the king size bed would be equipped with a handicap bathroom. When we arrived at the hotel, the staff was as helpful as they were on the phone. I was worried that this dream was too good to be true. I thought for sure, I was going to get slapped with a bill. However, we received the two rooms without an extra charge. The space was

 My sister, her three kids and my mom came for their annual trip to North Carolina. Whether we were swimming, playing mini-golf or painting pottery, the kids had a blast. Almost 10 days and not one fight among the six kids. Pretty amazing! For the first time, I kept Ben home from camp so he could spend all his time with the cousins. It was the right decision and worked well for this trip. Ben is on his new medicine regimen and I record every pill taken, at what time and Ben's activities and mood for the day on the computer. I faxed my observations to the doctor today and so far we are both happy with the results. Ben is more alert, happier, less sleepy during the daytime and his walking is stronger. I think it will take time and therapy for his walking to be what it was before this all started in March. i think you will even notice these photos show an alert and happy kid. Earlier in the week, two of Ben's drugs interacted to make for a very sleepy Ben. I gave Ben ano

These photos kind of say it all.

The phone rings and the caller ID reads "xxx management company". I pick it up, knowing it must be a telephone solicitor. The man introduces himself as someone representing our health insurance company. This can be nothing good - insurance companies don't call out of the blue for good news. I was wrong. This man was calling to give me his contact information in case I have questions in the future about Ben's claims and services. That was it - no cancellations and no complaints about how many times I call their offices. Just simply, I am reaching out to you for any future questions . Period, that was it. Smile on my face and good Karma sent his way!

Our visit to the neurologist was eventful and helpful. For one thing, she answered the questions about Ben's mobility problems and sleepiness. They are both side effects of the drug Clobazam . In addition, the medication, Doxepin , we are using to help Ben sleep through the night may react with the Clobazam and make him tired during the day. Plan of action - give Ben the Clobazam only at night and give one Doxepin pill, rather than two. If seizures do not occur, we may lower the Clobazam dosage. We also have room to increase Ben's Lamictol , another seizure medication Ben currently takes. We have Plan B, C and D too and they all involve changing doses if Ben has seizures or side effects. I have to keep the doctor informed about his progress. I did bring along my long list of dates with all the changes I saw in Ben since April and she was pleased with all the recording I did. (A star for me.) For the first time, I noticed that the doctor keeps a long list of seizure medication

For the first week out of school, I jam-packed it full of fun stuff to kick-off the summer. For the most part, Ben took all the goings-on in stride, but mostly he looked bored and tired. Finally at the pool, I saw a glimpse of the real Ben,  laughing and giggling. After finishing lunch, Ben kicked Kim (our long-time friend and community helper) and laughed like it was the funniest thing in the world. Once she caught onto his game, she teased him which made him laugh harder. He was trying to kick her and then push himself backwards in his wheelchair. When Ben slowly inched his foot toward Kim's leg, she'd "yell" at him to stop and that would get him laughing harder. Great fun! Later Kim got Ben to kick his feet in the water and then splash his hands too. I am hoping this is just the beginning of getting Ben back to where he was before the recent seizures. Later the same day, Ben had OT with a brand new therapist. She got to see some of his mischievous behavio

Separately, Ryan and I have been thinking about ways to get Ben on a bike ride with the entire family. Once we realized we both had this fantasy of family bike riding, we discussed what was available for Ben - seats, attachments and carriers. The equipment we have seen are simply too small for Ben since they are made for toddlers and young kids. So when Ryan and I had a few hours on our own and happened to be near our favorite bike shop, we went in and hit the jackpot. We were introduced to a program called, Lose the Training Wheels , soon to be called iCan Shine . This national camp-like program is specifically for children with special needs - physical and/or intellectual. With trained volunteers and parents as part of the process, they have had huge success in teaching children to ride bikes. Ryan and I are not convinced that this will be a program for Ben, but we think they will at least have some ideas on how to find something we can pull along on one of our bikes. But who know

The director at our local YMCA forwarded me information about a Miracle League Field being built at a YMCA just 15 minutes from our house. I was not familiar with the program, but after reading the information and viewing the YouTube Videos from Long Island, Michigan and San Diego, I cleared the tears away and signed us up to receive information. It looks like a great program for all families - whether as a team member, buddy, coach or volunteer. Here are some of the resources I found: General Miracle League Official Website History of Miracle League Videos Long Island, NY Miracle League - Video Tiger Weekly, Michigan - Video San Diego - Video  - This is the most touching one and I offer a "tear-jerker warning" Charlotte, NC Charlotte, NC Miracle League  - They want 40 team members for the opening game - I am hoping Ben will be one of them! Charlotte Observer Article If baseball is your thing, check out if they have a program near you - there are 250 intern

Sean was too young to remember his first visit to Tweetsie Railroad . He made up for any lost memories. They all look scared because this was the Free Fall ride. It was not that bad. This was as bad as it looks. A lot of spinning! Panning for Gold. Bank robbers took over the stagecoach. Someone offered to take the entire family... We spent most of our time at the theme park on these horses. And if this was not all enough, Thomas the Train was here too. Carousel ride for Ben. I had no idea these were the faces they were making.  Ben's driving these two lunatics around. We took the kids to Tweetsie Railroad in Blowing Rock, NC on Sunday. It has a country western theme complete with cowboys, Indians, forts, steam train and plenty of fake horses for the kids to ride on. This may have been our 4th time going - I worried the kids may have outgrown the park, but they proved me wrong. We had a great time and lasted for a record 7 hou

Sean decided to snap a few photos today and he used Ben as his model.

I've worked with your flower, And helped it to grow. I'm returning it now, But I want you to know... This flower is precious, As dear as can be. Love it, take care of it, And you will see... A bright new bloom, With every day. It grew and blossomed In such a wonderful way. In September just a bud, January, a bloom; Now a lovely blossom I'm returning in June. Remember, this flower, As dear as can be, Though rightfully yours, Part will always belong to me! --Author Unknown Ben's teacher sent this poem home, along with a letter describing her experience with our children this first year for her as a teacher. She also included a photo album for Ben filled with pictures from this year. Here are a few of my favorites: I won't include photos of other children from Ben's class, but there were several in there - always with the other classmate giving Ben the biggest hug. I know one little girl includes Ben in her prayers every night. I am glad to have a ph

This is an essay written for a graduate program application by someone who has known Ben for about 4 years. With Nicole's permission, I am posting this. I changed the name of the university. Working for the YMCA of Greater Charlotte exposed me to a lot of children. One of my many jobs at the YMCA is to teach swimming. As a swim instructor, I started teaching three-five years old how to swim. It was an amazing feeling and I enjoyed seeing the big happy smiles on their little faces. The Aquatics Coordinator had one specific child named Ben that she was assigned to instruct. Ben was five years old and has Cerebral Palsy. He does not talk, but makes loud noises in the water, which was a sign of his happiness. As time went on, I would say hello to Ben. I begin meeting his family and I would always give Ben hugs while he would pinch my cheeks and grab my hair. One day the Aquatics Coordinator came up to me and said that she had a new job offer in New York and was leaving in a mont

Three years ago, my sister and I surprised my mom for her "big" birthday (I'd be disowned if I listed which exact big birthday) and whisked her away to celebrate in Washington, DC. We had so much fun that we decided to make it an annual tradition. This year, they visited me in Charlotte and we shopped, ate and worked it all off doing Zumba and Pilates. Next year...perhaps DC again, it is smack in the middle for all of us, making travel plans easy.

I love everything about camping - sitting by the fire, eating outside, cooking on the grill, hiking, listening to the night noises and even the shower houses. Just give me a real bed to sleep on after I've eaten my very last s'more. I found the perfect solution - all the camping fun with a small cabin filled with a set of bunk beds and one full-size bed. No bugs or rain to worry about. And did I mention that these little cabins have air conditioning in the summer and heat in the winter? I do need some comforts. (I just went down a few notches with my friend Carla, who thought I was superwoman for camping. She did not have the full story. I do believe in full-disclosure and the cabin will be seen in the photos ;)

We are fortunate to have a local nature museum in Charlotte that is wonderful for kids (and adults). Well, wonderful for some kids. Ben hated this place from the very first time we set foot there more than 6 years ago. Each time, I convince myself that he will love the animals and exhibits. It is an easy place for me to take all three boys by myself and watch them safely. Usually he is in his walker and he spends the entire time at the doors trying to get out. Since he was in his chair on this visit, he cried, yelled and whined to make his position known. This photo serves as a reminder to avoid the nature museum when Ben is in the group. The next week I took Ben to another kid museum and he loved it. He sat at the make-believe restaurant table, made several rounds at the fire truck and seemed happy to be a part of the fun. I cannot figure out why one place is fun and the other not. Ben likes the zoo so I don't think it is the animals. Perhaps it is a smell, noise or someth

Two summers ago, when Logan was five years old, we met a homeless man, named Paul. It was a brief meeting, but it had a world of impact on Logan. After talking for a few minutes, Paul and I realized, we had a shared acquaintance - my neighbor, a social worker at the local men's shelter. The idea of homelessness had popped up many times. Living in a city, we see people pushing carts around, hanging out under street bridges and occasionally on a bench. Logan had asked endless questions about their life living on the streets. After seeing Paul, he wanted to solve the problem of homelessness. He suggested we put signs up around the city showing homeless people they could come to our house. Logan is a sensitive child and feels things very deeply and thoroughly. He thought about how Paul had to sleep with his hands under his head because he did not have a pillow. In lieu of signs pointing to our house, I reached out to my social worker neighbor to ask what we could do to help Paul spec

To some it may seem like I dropped off the map for awhile. It is always hard for me to write about what is going on when I am in the middle of it happening. I am a processor - analyzing and dissecting experiences before I make sense of them. This long version is a timeline, a written record of Ben's behavior, our reaction and the doctor's response. It will serve as an invaluable tool for me when I meet with the doctor in June. April 25 - Ben participated in the Special Olympics. Although he had a big and busy day, he did not go to sleep. He did not sleep until the wee hours of the night, or early morning, depending on your viewpoint. April 26 - April 30 - Ben did not sleep well. April 29 - Ben seemed ready to crash for an early night.  The craziness was over. (Little did I know it was just the beginning.) April 30 - Ben came home from school at 11am because he was sick at school and had seizures. I called the neurologist. Doctor increased current meds to 6 pills in the

Michele sent this to me last week. She is one of the eSpecially Parents writers and you can catch up on her story here . Check this out... It's about extremely rare disease research at NIH . It was aired last night on 60 Minutes. It was so strange seeing Ethan's doctors and the hospital we go to on TV!!! This is basically a lot of what we go through... The teenage boy has an inflammatory disease similar to Ethan.   60 Minutes * When I posted this a few minutes ago, I had not seen this clip. Just watched it and learned a lot about how NIH works, the people involved and the resources available. It was worth the 12 minutes.

Welcome Blessings  is a blog written by a mother in my neighborhood. We were introduced because her daughter, Mikisa, and Ben played in the pool during Ben's swim lessons. I did not plan on putting this out just in time for Mother's Day, but as it turns out, it is quite appropriate. Please read it. The writing is good and the story is something out of a fictional movie. It is a good reminder that there are people out there who venture into the unknown and come out at the other end with more love in their heart and a special gift from God. If you want to start with this entry, Mikisa Mae, please do so. I must warn you that you will be sucked in and read the rest. Just set some time aside. Happy Mother's Day!

The pattern continues - Ben goes to sleep easily between 8 and 9pm, then something unexplainable happens and sleep alludes him. It usually lasts a few nights. This time it was 6 nights. These photos are from this period. After doctor prescribed pills and melatonin, he finally sleeps, but not until 11pm or so. During his waking hours, Ben is raring to go. We try to wear him out with everything from church to shopping to parks. Nothing works. He takes our hands and leads us to the car. Ben sits in the car in hopes that we may go somewhere else. I let him sit there if only to give me a moment's peace. If someone stops by, he tries to lead us to their car. It's like he's saying, "Please, take me out. Anywhere. Just someplace." Tonight he has finally crashed. I never thought whining and crying would be music to my ears and offer relief, but this is his sign that pure exhaustion has set in. Right now, he is curled under the covers in his bed watching good 'ole

iPads are all the rage now for kids with special needs, especially children with autism. These sites were sent to me by various sources. I have not checked them all out and cannot speak to the quality and accuracy of the information provided. I do think there are many resources out there and if you think your child is ready for and would benefit from a communication device, there is a grant or funding source available to your family. It may just take some extra work to find it. Here are some of the sites sent to me: ACT Today Danny’s Wish The Adam Scott Foundation Autism Grants Program Apps for Children With Special Needs (A4cwsn) Hollyrod Foundation iHelp for Special Needs The iTaalk Autism Foundation The Puzzling Piece Small Steps in Speech The Conover Company Apple iPad web site Accessibility features The Top Five Tips to Get a Grant to Buy a iPad (article): Friendship Circle Blog Parent to Parent message board Facebook- Special Needs Classroom Special

When your child has seizures, it opens up a new can of worms. Finding the best medicine with the least amount of side effects and then getting the dosage just right is only the first part of this adventure. Bodies and brains constantly change making it possible that medicine and dosage may not remain the same for any significant amount of time. Staying current on seizure management involves charting seizure activity, doctor visits and vigilant observation. Two months ago I  noticed Ben's head dropping. This is his outward way of showing seizure activity. The head drop is worse if there is a table or bathtub in the way - bruises and bumps on Ben's eye and chin are common. I would see it once and then not again for a day or two. I was disappointed because I knew that Ben was at his maximum capacity for the dosage of this particular medicine. And this medicine had virtually no side effects for Ben. I watched Ben's behavior and noted what I saw, ready to talk about it with hi

Logan and Sean were part of Ben's cheering section. Today, Ben participated for the first time as an athlete in our county's Special Olympics. For 29 years, these games have been held at a local private school. They shut the school down for three days and the high school students serve as the hosts and buddies for this event. Probably the best thing I saw this year was the athletes running toward the finish line, but slowing down to take in all the cheering from the crowd. These athletes will remember the clapping, yelling and support - reminding us all that the gold, silver and bronze medals hold little next to a roaring crowd that is there just for you. For Ben, the Special Olympics is like Old Home Week . He saw past classmates, teachers, assistants and physical therapists. Every time I turned around he was in the midst of a huge hug. Ben enjoyed the excitement and energy of the event. Emotions run high for me at an event like this. Mostly my tears come from pride