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 a school-aged child with a developmental disABILITY who wants to expe