eSpecially Ben

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 sm...

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 ...

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...

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 Classr...

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...