Tuesday, June 25, 2013


Never thought I would be relieved for Ben to have just a run-of-the-mill skin staph infection, no MRSA. Thank you for your prayers and well wishes. 

After taking Ben to the doctor a second time and being reassured that he was healing, I did go to Philadelphia to see my friend Carla. We had an incredible time catching up, eating, walking and just spending time with each other. I came back refreshed and ready for anything. The trip reminded me that getting away is important to my mental and physical well-being. Perhaps I should not wait 13 years again to visit Carla.

If you are ever in the Philadelphia area, I highly recommend Longwood Gardens and Tyler Arboretum. They are probably some of the most beautiful places I have seen in awhile.

Wednesday, June 19, 2013

A Twister

Have you ever been on a roller coaster ride and you are so miserable that you are not sure you can hold out until it ends. Hoping against hope that you will not be the one to yell, "Stop!"

Beginning with last week, my ride has been of the boomerang, double dip, dog leg and cobra roll variety. Unfortunately, I am still on it and expecting a trim brake is my only consolation.

It started last week with stressful staffing issues for Ben and escalated from there.

As last week progressed, I noticed a pimple on Ben that needed watching. By Monday morning, I knew a doctor visit was inevitable. That Ben was in pain was obvious. Because of the location of the infection, he could not sit. He was yelling, moaning and whining, something Ben simply does not do. His pain tolerance is very high.

At this point, my anxiety and stress were affecting me physically and emotionally. I was keenly aware of my situation, but I did not see any way to a quick fix. If I had a doctor prescribed pill, this would have been the time to take it.

On the way to the doctor's office, I sat at a stoplight. I noticed Ben scratching his infected area. I turned around, leaned back and pulled his hand away.

Then something hit my car. I was dazed and confused. An older man came out of the car in front of me yelling, "What the hell is going on?"

In my effort to get Ben from scratching, my foot came off the brake, and I hit the car in front of me. I came out of the car shaking, crying and apologizing. I realized what I had done. Thankfully, the man calmed down when he saw me and realized there was no damage.

I was probably in no condition to drive, but there were no other choices at this point. I made it safely to the doctor's office and cried when the receptionist checked us in. The doctor added a nice bow tie to my morning and told me it was likely Ben had MRSA, but would not know until the test results came back in a few days.

To add to my stress, I am flying to visit a long-time friend today. Ben is not fully healed and I am uncertain to whether it is getting better or not. This trip has been planned for months and the guilt of leaving and the worry for Ben is weighing on me. He will be in good hands with the people who are taking care of him in my absence. I really need to go, and I know that.

When it comes to roller coasters, I am with the general public. I like my ride slow, steady and smooth. Staying in my seat with arms at my sides is my preferable position. Bumper boats are about as crazy as I would like to get. And even then, just about once a year is enough of a wild ride for me.

Friday, June 14, 2013

Tunnel Vision


This was a first for Ben. He sat in front of it for several minutes then went for it. He made it all the way through!

Wednesday, June 12, 2013

Questions & Answers

Sean is five years old and his awareness about Ben's condition is growing. His curious questions, frustration with other people's questions and then his answers to others' questions show that he is experiencing emotional and intellectual turmoil.

Sean had expressed to me that his friends at school asked a lot of questions about Ben, and he was annoyed with the questions. Not in answer to Sean's concern (I did not have the wherewith all to plan this), I took Ben to Sean's classroom for lunch. The children stared at Ben, and Ben did not help the situation because he was overly excited to be there and was making so much noise.  It is a Montessori school so meals are eaten in silence so Ben's sounds were even more pronounced in the very quiet atmosphere.

After I realized the kids did not know what to make of Ben and were perhaps a little scared, I asked the teacher if I could formally introduce him to the class and answer their questions. I was not ready for some of them - Does he have any bones? through me for a quick moment. After the experience, I saw how difficult it was for Sean to both hear the questions and figure out a way to answer them.

On another occasion, Sean asked if Ben will always "be special needs, even when he grows up". Yes, was my response. From Sean, "So he won't be able to drive." No he probably won't. "That's boring." Sean has taken to using the word boring when he really means, "sucks".

Then another day at the park, an adult asked me about Ben's disabilities. Sean was standing right there and jumped right in with "he is a needs child, he has special needs. He cannot walk or talk, but he can hear and see VERY well." Sean went on to describe the Nova Chat and how he uses it to tell us things.

As I reread my writing I already see growth in Sean. Many months ago, he was unwilling to answer questions about his brother, but in the last few weeks, he was able to answer a question and list Ben's abilities as well as his needs. As my good friend Tracy preaches, Trust the Process.

Monday, June 10, 2013

Love the One You're With

Logan attended a sleepover so we took Ben and Sean out to eat at their favorite burger joint. Throughout the meal, Ben would not take his eyes off of Sean, giving him the "Look of Love" coined by Logan a few years ago. Until this night, this look was reserved only for Logan. Of course I did not have a camera to capture the moment, but here are some others of Sean and Ben.

Saturday, June 8, 2013

Summer Resources

After I saw this offer by Studio Movie Grill to see first run movies in a family atmosphere (read=noisy) where kids with special needs and their siblings were welcome, I knew I had to share the link. The kids are all free and the adults are $6. This company is nationwide so take a look to see if there is one in your area.

Then I thought I should share other summer resources and if I had about a million years, I could put them all here, but luckily another organization did the work for me:

Federation for Children with Special Needs - This is Federation's 2013 Summer Fun Camp Directory. You will find links to over 200 camp Web sites serving children with disabilities, as well as useful information and resources to help create a rewarding summer camp experience for you and your child. 

Here are a few others I found:

Top Ten Activities - AbilityPath.org created a list of ten summer activities to do with your child that don’t require weeks of planning, a small loan or traveling further than your backyard.

NICHCY - They serve the nation as a central source of information on disabilities in infants, toddlers, children, and youth. 

Washington State Resources - The Center compiles a searchable list of summer camps for children with special needs in Washington State.

Ohio Resources

Friendship Circle

Victory Junction

It may be too late for some camps this year, but it can help you plan for next year by taking a look at the offerings. February is typically the time to get your camp on.

Please share any others you may know about from your area.

Tuesday, June 4, 2013

Getting A-Head

Logan got himself buried in the sand with Dad's help.

Summer is almost here!

Monday, June 3, 2013

Walking In Water

Last summer, while on vacation at a Jellystone Campground, Ben started to let go of me in the pool. He wore a life vest in 2 1/2 feet of water and by the last day, he was pushing me away and standing in the water unassisted for short periods of time - a few seconds at the most.

This year, we joined an aquatic center with a special indoor therapeutic pool. I figured by the end of this summer, Ben would walk in the water while holding on to the rails.

Once again, the stinker proved me wrong.

We went to the aquatic center twice during Memorial Day weekend, just a week ago. Ben screamed in joy every minute of the 5 hours total we spent there. He sat in about one foot of water and watched everyone play. He moved around a bit by crawling and scooting.

This Sunday, he insisted on leading Kim, the community staff person, to the 3ft area. (big kudos to Kim, because the water was icy). There were many boys his age swimming around and goofing off. They definitely were the impetus for him wanting to go over to the deeper water.

Kim caught my eye, and said I needed to come over there.

Ben was standing in the middle of the pool, on his own, and then he walked the 5-6 feet to the edge. He continued to do this for the next hour or so with only two breaks for snacks. He did not have physical help from anyone, and he was not even in the therapeutic pool with the rails.

His smile was huge. I can only imagine the independence he felt.

So that's three days into swimming. Summer has not even started. What will this boy do next?

No photos or video to offer as proof because I was not expecting Ben to surprise us all on the 3rd visit to the pool. You will have to take my word for it - grandparents and Kim will vouch as well.