eSpecially Ben

Merry Christmas!

Within two days, we have received great news about three things related to Ben: 1. When Ben's old tricycle proved too small for him, we started the process to purchase him a larger one a few months ago. Ben's new case manager, who has been on top of the process, called yesterday to say that it had been approved. By the end of January, Ben will have a new blue bike to ride around on. Woohoo! 2. Yesterday afternoon, Ben brought home a letter about where he will attend middle school next year. I visited the two schools closest to our home and one stood out as the best fit. I wrote a letter requesting this specific school, stating the reasons and also called a few people to let them know our preference. I was prepared for a long appeal process if Ben did not get assigned to this specific school. Looks like I can put down my battle axe - Ben was assigned our school of choice. Hallelujah! 3. Since 2013, I have been working to get an accessible bathroom for Ben. It has bee...

Sean, Ben & Logan at Ben's favorite coffee shop, Smelly Cat. In the last few weeks, Sean, our six year old, has expressed that he wishes to live with Ben and their cousins when they get older. According to Sean, he and Ben will share money, and Sean will cook supper (his word, not mine). Then he wondered where Ben would work. After talking about a few options, he decided that Ben could work at a coffee shop, wiping down tables and cleaning the floor. We smiled at Sean's sweet idea to live with his brother when he gets older. Who knows how the future will play out, but it says a lot about what is in Sean's heart. These conversations with Sean combined with a recent meeting with a mom with a 22 year old child with special needs really got me thinking. This mother was concerned about how her daughter would spend her days when she graduated in May. I realized that Sean had a point and thinking about this now, and not later was important. Why couldn't Ben work ...

In September, a family counselor, after hearing our stories of stress and feelings of being overwhelmed with life, declared that we should cancel hosting Thanksgiving at our home. I looked at her dumbfounded. Un-inviting family members and changing the plan seemed like crazy talk, but it also seemed ingenious. Rather quickly, Ryan and I agreed with her proposal. I called family members and told them the situation. The relief I felt was incredible. The counselor's permission to change the plan and essentially say "No" to hosting Thanksgiving got me thinking about commitments and stress, and it lead me to declaring 2015, The Year of the No . In fact, I have used the last of 2014 to practice. The following issues have helped guide me in making my decision to say yes or no : Making the Choice Please do not read this and think I am suggesting you say no to anything that comes your way. I am saying to think about options before blurting out yes . Ask yourself: Why am I...

For two years, we have steered clear of jolly Old St. Nick. After  the incident at the Shriner's Christmas Party  in 2012, we did not want to risk our standing with the big guy at the North Pole. It seems, however, that Santa has let bygones be bygones. We visited Daniel Stowe Botanical Gardens and Santa was there visiting. I knew Sean, our six year old would agree to a visit, that Logan would say no, but was completely surprised when Ben went nuts with excitement when he saw Santa. With trepidation, we approached Santa with Ben. Ben savored every moment with this gentle and kind Santa. It was not crowded, and there was no pressure to rush the experience. When we were not sure if Ben was going to cuddle with Santa or pull off his hat, we said our goodbyes. (Well, not until I sat on Santa's lap and took a photo. How many other chances will I have to do that?)

Logan awoke this morning with investing on the brain. He wanted to buy Apple stock, or perhaps Microsoft. He was unsure. This conversation, of course, was at 7:30am, in the midst of getting three kids ready for school. Not wanting to discourage a potential investor, I sent him to research investing for kids on  About.com . Logan looked up investing vocabulary and found this site,  Investopedia . He started a notebook and wrote down important things he learned. He also saw his first "con": a site was asking for personal information and said that everyone was doing it. The counter on the site increased quickly, making Logan think he was missing out on something. A lesson or two later, and he was wiser about how giving information on the wrong sites could be used. Logan's list for Santa this year may include stocks and mutual funds. Not the way I thought Christmas would go this year, but I can roll with whatever the market bears. *If you get the Alex P. Keaton refer...

North Carolina’s  Partners in Policymaking©  Leadership &  Advocacy Training Initiative funded by  the North Carolina Council on Developmental Disabilities  is pleased to announce the opportunity to apply for the 2015 Class of  Partners in Policymaking© (“Partners”) .   Partners is a nationally-replicated leadership and advocacy training program.  This program is designed ONLY FOR self-advocates with  developmental disABILITIES  and for parents (and caretaker siblings) of school-aged children with  developmental disABILITIES  residing in the State of North Carolina. The program teaches how to garner the skills and employ the tools to become, “ effective disability policy change agents ” for better, more successful outcomes in their own lives and in the lives of others. The program is for anyone living in North Carolina who has a developmental disABILITY,  or is a parent or care-taker sibling of ...

When I pick Ben up from school, usually one of the staff bring him to the office. Today, they were short-handed and asked if I would walk down to the classroom to get him. As I turned the corner, I saw his classmates lined up on the colored tile, and Ben on the opposite side turned around in his chair, not listening to directions. The teacher was congratulating the class on lining up well and sweetly admonishing Ben for trying to get the attention of one of his friends. Ben heard my voice and realized I was there, and he reluctantly tore himself from looking at his friend, a little girl he has been sweet on for a few years. He wore the biggest smile on his face. As we left, he tried to touch one friend who quickly told on him, in a big sisterly sort of way. Another long-time classmate reached for a hug to say goodbye. There was a chorus of, " Bye Ben " from the other children. All the while, Ben was smiling, very happy to be around his gang of friends. Made my day - we ...

POW! SLAM! KABLAM!

This was a post I saw on Facebook - worthy of sharing here. I am also including links to the Special Olympics Unified Sports Program, a recent program that is gaining traction all over the world. My Brother is Not Less Than Special Olympics Unified Sports New Legislation - Supported by Gov. Christie *We are about six months away from our local Special Olympics Opening Ceremonies. 

In the course of working on purchasing new equipment for Ben, I made contact with someone who developed a list of funding sources for families. She would prefer not to be named - we will just call her Angel. Angel did this on her own, to help the families who do not have a way to pay for the equipment their children desperately need. If you know of others we can include on this list, please add in the comments section or email me directly. The web addresses and information have been checked as of today, October 24, 2014. Angels in Need Davidson, North Carolina Website: www.angelsinneed.org Phone: 704-607-5118 Coverage: Local & International Angels in Need is a 100% volunteer, 501(c)(3) non-profit public charity based in Davidson, North Carolina. It is our mission to serve children with special needs and their families both locally and abroad. Our goal is to enrich the lives of these children and families by supporting already existing programs and organiza...

We chuckled when we referred to the two Bens as BO & BM, their initials forming unfortunate shorthand for human functions not talked about in polite company. They were in preschool together, neither very mobile and left on their own much of the time. Ben's mom, Donna, and I bonded over the mistreatment of our sons, both of us ultimately taking them out of the poor situation. Donna was going through a divorce at the time and had a lot of stress on her. She was a single mom trying to help her Ben. Donna's Ben had a smile that stayed with me. His eyes were part of that smile and any interaction I had with him, even at that small age of three, I knew that he was listening and welcomed my attention. After leaving the original preschool, I lost touch with Donna. A few years later, we all ran into each other at a children's library and stayed in touch from then on. Donna wrote a few posts for eSpeciallyBen, and then I did not hear from her for a few months. At tha...

In April, Ben received his long awaited larger Convaid Cruiser, a portable and light- weight wheelchair.  Within a month, the canvas seating began to fray on the corners and Ben pulled off one of the crucial straps for buckling after it frayed beyond repair. Both were quickly replaced by the distributor, the sales company that purchases the products directly from Convaid. Within days of those repairs, the brake broke and a bolt came loose from the handlebars. Again, the same technician from the distributing company came out and handled the repair. His general diagnosis about the continual repairs was that the chair was put together too quickly, probably on a Friday afternoon.  On a "it is a small world" side note, the technician had an unusual last name and I commented that I was friends with someone in high school by the same name.  He doubted this because very few families in the world shared this surname. After a careful game of who, what and where, we confir...

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...

Finally, after two years, I got my act together and organized swim lessons for Ben with an instructor at the pool we have joined the past few summers. I saw her two summer agos working with a child with special needs, even got her phone number, but never made the contact until this year. Of course, when we showed up for the first lesson, Kathy already knew Ben from school and knew that he was a stubborn one. (That kid sure gets around.) The lesson in the video above is his fourth and final one for the summer and the growth in his abilities is remarkable. The biggest change she made was taking off his life vest and putting on a three-block flotation belt . It made Ben use more of his own body to swim and also gave him the freedom to move more easily through the water. With such success, we are implementing some of Kathy's ideas in Ben's weekly physical therapy in the pool and talking with the YMCA about finding an instructor that can work with Ben on a regular basis.

Dr. Kilbane was one of the doctors I interviewed for the nutrition article for Charlotte Parent. In order to reach more families at a reasonable price she is offering webinars about nutrition.  Just in an hour phone conversation, I learned so much from her, so I can imagine a series of workshops would provide new and practical information for parents.  If you are interested, you have to act fast - they begin next week.  www.sheilakilbane.com More about Dr. Kilbane:  Charlotte Observer Article

In June, I was asked to write an article about nutrition and its effects on special needs children.  The article is out. This is the link: Charlotte Parents Exceptional Child's Article

The tune "Ding-Dong The Witch is Dead" from The Wizard of Oz rang through my head when I was introduced to Ben's new school speech therapist last week at Open House. It meant the old one was finally gone after three years of doing battle. I had given up on Ben receiving any type of formal speech therapy at school. The final straw came when I compared three years of IEP and progress notes and found that the therapist had copied word-for-word her comments every time. She changed nothing. From the beginning, Ben's response to her was to kick and bite. I never denied he did those things to her, but it let me know that something was not right and I had the IEP reflect that Ben could not be alone with this therapist. Luckily, Ben's teacher and principal supported what we were trying to do with the NOVA Chat and communication in the classroom. They did everything within their power to make sure Ben received services, but in many ways, their hands were tied. Ben was n...

AMBUCS is a wonderful organization, providing adaptive bicycles and tricycles for kids and adults with special needs. Ben is on his second tryke, and this one was a gift from his Aunt Olivia a few years ago. One of our biggest challenges in the past has been getting Ben to keep his hands on the handlebars, but he is now listening to our directions and holding on tight. We added a strap to help keep his chest in place and provide extra support. With assistance, Ben can ride up to five blocks now. When he gets tired, he starts to slump over. Holding his chest and body in place in addition to pedaling are hard work, but great exercise. Our goal is to get him to ride all the way to the playground after school to see his brothers. It is six or seven long blocks. I think it will be an accomplishment that will get lots of attention from other kids which is a great motivator for Ben. At the end of the day, like any kid, he likes to show-off. Joey, walking beside Ben, is one of our ...

Ready or not! Ben - 5th grade Logan - 4th grade Sean - 1st grade

Many parents with special needs children chart behavior, medicine and any other information they may need to know. Up until this June, I had only made note when Ben had seizure activity and this was at the request of the neurologist. I had made sad attempts to track his sleep in the past when it was haywire, but nothing was consistent because I was too tired to follow-through. I started this journey with a goal of a four week dairy elimination diet. Now we are on Day 60, tracking the following items: Seizure medicine changes Addition of allergy pill Addition of probiotic Bowel Movements Sleeping hours (including any naps) Dietary changes Cheating with diet changes We have learned so much from keeping this chart. As you can see from the photo, I did it "old school", on a paper calendar. I used pencil, pen and different colored highlighters to help things stand out.  These are a few areas in which I think charting may help: 1. It is a good reminder about t...