eSpecially Ben

I write this, in hopes that the feeling of being emotionally drained will dissipate. I attended a meeting coordinated through North Carolina's Department of Health and Human Services. The meeting's purpose was to listen to feedback from parents, caregivers, providers and consumers about the Innovations Waiver and other services through IDD Services (Intellectual and Developmental Delays) and Mental Health. The Innovations Waiver is a program designed to help parents keep their IDD or mentally ill child at home and out of an institution. Ben has been part of this program for about 4 years. With state and county money, he receives managed care in the form of direct service providers that help with personal care and skill-building activities in the home and community. There is a long wait list to become part of the program, typically taking years to get the services. Reluctantly, I went to the meeting with the only incentive being that my long time friend, Karen, would be ther...

Five Years 2009 When I started, it was 2009; Ben was six years old, Logan was four and Sean was one. My first post, Love at First Sight , was an "all in" jump. I stayed up well past my bedtime, writing and creating a name for this site. It posted on September 18 at 11:43pm. At that point, I did not have any long-term goals or expectations for the blog. I knew I wanted to write, wanted to share and for as long as I had something to write about, I would keep doing it. That was it. Not much more thought went into it. Good Stuff Five years later, I could not have imagined the outcomes from writing eSpeciallyBen . We have this incredible record of Ben's progress, helping us to see patterns, changes and growth. We made connections across the world with people who care about similar issues. My confidence in my writing increased and I sought out paid writing opportunities. We have become closer with distant relatives who came to know us through eSpeciallyBen . And ...

When asked to hold onto the monkey bars, Ben chose to hold onto Joey tightly. For the past several years Ben has had therapy everyday after school. This meant he missed out on park time with his brothers. If therapy was cancelled, we rejoiced because Ben could join us. This year, I rethought therapy time and managed to have therapists come later in the day or meet us on the playground. His new occupational therapist, Maggie, has met us at the park on a few occasions. Ben pet a dog, swung on the swings, ate a snack, rode his tricycle, played with bubbles and tried holding onto the monkey bars. He used his NOVA Chat to make choices about what activities he wanted to do. This has been a great way to reenergize therapy, involve other kids and help Ben strengthen his skills. You ask, What is  Parkour ?

It has been a tough transition for Ben from summer fun to school work. Last week, when the bus arrived at our house, there were no excited hands and feet jumping about. The lift carried a confused boy, wondering what happened to those carefree days of swimming, movie watching and lots and lots of time with the brothers.  On the first day of school, Ben came home with brother withdrawal. He could not get enough of them after school, attacking them with his rough hugs any chance he got. Assuming that Ben would be exhausted from a day of school and therapy, I was excited for some early nights to bed. Wronger I could not have been; he stayed up between 11pm and 1am each evening. I did not count on this transition, but with Ben's increased awareness, I should have.  Anyone going from an easy summer of fun to a rigorous schedule of school and therapy would find the change a challenge. Last day at the pool.   Last days of summer freedom.

" Haha, you think you can hold me with these stinkin' sheets! " Ben's new neurologist ordered a 30 minute awake EEG , a fairly routine test for people with epilepsy . I brought reinforcements in the form of Kim and Bob. Kim is Ben's longtime caregiver and Bob is his favorite character on the Bob the Builder show. Even with backup and distractions, they brought in another technician to hold him down. Ben dislikes anything on his head, and so he fought to take the wires off his head and kicked to try and get off the bed. " I will let you beat me this once! " We had called ahead to ask about using a papoose, but we were told that they no longer provided one, but they could provide us with sheets to use. Kim was the ingenious one and wrapped Ben like a burrito.  Something I did learn through this process was about Clinical Seizures and Sub-Clinical Seizures . Ben has both - his clinical seizures are atonic and this means they are characteri...