eSpecially Ben

Right before winter break, I got word that our school district, Charlotte Mecklenburg Schools, was phasing out the special education classes at Randolph Middle School, Ben's middle school (grades 6, 7 and 8). Phasing out means that rising 6th graders would not have the opportunity to attend Ben's school next year. As the current students in the special education classes transition to high school, the program would be closed. Unfortunately, the school district made these changes without talking to the parents whose children are in the program or those who may have been interested in the school's program for next year. It does not appear that anyone at the school was consulted. The decision was made for next year without consulting those who would be affected. Within the past week, we have received tremendous support from many different groups of people - parents of regular education students, parents of special education students, teachers, administration and school boar...

My husband, Ryan, and I met in college in 1991, although we did not date until a few years later. Our first years of marriage were spent renovating an 80 year old home in a precarious "arts district". And when I say renovate, I mean we did all the work and lived in two rooms in the house for five years. We both had full-time jobs too. We had no kitchen or central heat or air conditioning for at least two years. To say the stress of it all was horrendous is not giving you an accurate description. There were some good times, but it was difficult for me to live in carpentry filth, disorganized mess with uncompleted projects for that long. It took counseling to get us through it all. Although I would never put myself in that same position again, renovating the house ourselves allowed me to stay home with our children...which in so many ways turned out to be what we dearly needed when Ben arrived. Ryan and I were married 5 years when I gave birth to Ben in July of 2003. My p...

Good News: ABLE Account Available It's Official: ABLEnow is Open for Enrollment Today marks an exciting milestone for people with disabilities, their families and advocates. ABLEnow is open for nationwide enrollment at  able-now.com . The ABLEnow program opens today on the two-year anniversary of the federal Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act being signed into law, authorizing states to establish ABLE savings programs. ABLEnow provides people with disabilities the opportunity to save money for today’s needs or invest for  tomorrow . These simple, affordable and tax-advantaged accounts allow eligible individuals to save up to $14,000 a year without endangering eligibility for certain means-tested benefit programs such as Medicaid and Supplemental Security Income (SSI). The ABLEnow program offers some of the lowest fees in the country, an online portal to manage your account and the ABLEnow Card—a debit card providing a simple, fast way ...

No, I have not forgotten about eSpecially Ben. This site is on my mind all the time as I write about topics from pickleball to running . Since January, I have become a full-time freelance writer with several paying clients. I am involved in a great freelance writer's group that I learned about through an online course  [ affiliate link ]. As my mother often reminds me, Ben is the reason I am going all-in with my new writing career. I started eSpecially Ben seven years ago, and it has connected me to so many people all across the globe. It has helped my family and friends understand our struggles and also help other families deal with their own issues. So you will see less and less new posts here, but I am thinking about creating an e-book based on this blog site. I still have much research to do before I make that decision. I will keep you updated. In the meantime, I will post my freelance writing on social media. Please follow me on Instagram , Twitter and Facebook...

Ben had the opportunity to go down the water slide today. We have been going to this pool for three years and have thought about getting Ben down the slide, but the conditions were not always right - too hot, not enough adults to help or life guards were not in favor of the idea. Today, everything lined up and we were given the thumbs up for Ben to go down the slide one time. I was at the top of the slide and should have taken the photos from there - I had a perfect view of a smiling kid slowly going down the slide. 

Ben got a big surprise today - his friend and peer buddy, Kay, met us at the pool.  Kay and Ben could not stop smiling.  At Ben's school, students from the general education classes can apply to be a peer buddy to a student in the exceptional children's program. Peer buddies help with Special Olympics, field trips and other activities throughout the year.  According to Ben's teacher, the relationships between the students develop into strong friendships. The peer buddies end up visiting the classroom whenever they get a chance - usually every day. Kay told her mom that Ben chose her as his peer buddy. He got so excited every time she came into the classroom during that first week of school that the teacher had to put them together.  Kay moves to high school this year, but we have plans to stay in touch and get together. This friendship is too special to forget.

Kickstand Burgers, Charlotte, NC Summer is here and we have been busy. Ben has been in the pool more times than I can count. Logan and Sean have already been to camp, and we all went on a short vacation over Memorial Day. I have been writing regularly for an online site, CharlotteFive . I have been fortunate to grab a few other writing assignments here and there. It has been tremendous fun, but it has kept me busy. I have not been able to post here as often as I would like. Here are few quick photos to relieve me of the guilt I feel for not posting regularly: Pool Time Lake Junaluska, NC NASCAR LiftMaster Pole Night, Concord, NC Daniel Stowe Botanical Garden, Gastonia, NC Lake Junaluska, NC Cataloochee, NC Duck Island, NC

Yesterday morning, I received a text with photos from one of the assistant teachers in Ben's 6th grade class: Randolph Middle School students had lined the walkway into school and the hallways as the Special Olympic athletes paraded through the crowd of students. (I tear up even now as I write this.) The athletes and their peer buddies. Bulletin board to show support of their classmates.

Special Olympic Mecklenburg County Opening Ceremonies were today. My sister and her family are visiting from New York. This was their first time at the Special Olympics.  It took awhile for Ben to realize we were all there, but as soon as he did, he was excited to see everyone.  And tomorrow Ben competes in the softball throw. 

This is a photo of Ben after he met a new friend today. Ben giggled the entire time he was with his new friend. We were connected with the "Z" family a few months ago when we were donating a piece of equipment. A school physical therapist connected us, but we only met the dad that first time. He mentioned that their son seemed similar to Ben. We finally met today at a local park and Ben and "D" were strangely similar in their abilities, habits and history. Ben was in love with the whole family, including their dog. Ben was interested in D and tried to interact with him. It was fun to watch Ben "make a friend." I see us spending more time with them - Ben's judgment of people is usually spot-on.

Charlotte Parent posted this story: An Interview with TEACCH's Dr. Gary Mesibov

This just came out in Charlotte Parent, Piedmont Parent and Carolina Parent: Clinical vs Home Therapy: What is best for my child

Proms, dances and special events - our kids want to included in all of them: Season of Dance in Charlotte Parent

Ben came home with this today.

Ben is living the teenage dream in his own room with puppy and sports car posters. He also has a touch screen computer with wifi now. Ben uses Amazon Prime to watch all his favorite movies.  One day I found Ben sitting at his desk trying to get another movie started. When I went over there to help him, this is what I saw on the screen:  I assume he hit the wrong buttons, but perhaps he was shopping Mother's Day early. It sure would have been a strange conversation between Ryan and me when that faux fur shawl arrived at our house. I better make sure that One Click is not working on Ben's computer.

Our family's latest escapades are listed on the Charlotte Parent's website -  Friday Nights are Family Nights at the Rink You may not live in Charlotte and near this particular roller skating rink, but think about what activity can be adapted to fit for your entire family that is located in your hometown.  And remember, you never know the answer until you ask if your child can particiapte in a modified way.  Write in the comments places you and your family go to have fun together.

In the fall, I wrote about Ben's  purchase at his first visit to the school book fair. He chose a cute poster of puppies. It hangs above his bed, and he often looks up at it and makes his happy noises. At the book fair last week, Ben brought home the poster of a Lamborghini. I will hang it next to the puppies. I think Bob the Builder pictures will soon be retired. I wonder what this almost 13 year-old-boy will make as his next poster choice after dogs and a sports car. Surely, school book fairs don't have posters of swim suit models.

My Charlotte Parent post this week was made possible by Ben's teacher, Mrs. Glass.  Valentine's Day All Month It's a good reminder to whisper good things into the ears of the people we love.

The cool spaceship is to motivate Ben to walk from one end to another. We have been waiting a long time for Ben to join a swim team. Now, he can show off his skills at the Special Olympics in a sport that he enjoys. Our local YMCA staff and local Special Olympics worked together to start a team.  Ben's first practice was this past Sunday. We could tell he was confused by all the swimmers in the pool with him. He could not help staring at the other athletes. After an introduction and a high-five to a 16-year-old swimmer, Ben was pleased. Making new friends will be great for him. Here's my post in Charlotte Parent: Introducing the East Meck Otters Swim Team

I had a whole bunch of fun yesterday and then got to write about it: ‘We believe in them.’ Panthers fans gather outside practice to show their passion for the team

I grew up next door to my cousins, Matthew and Melissa. My Dad and their dad are identical twins and besides living next door in exactly the same house, they drove the same truck (different colors) and owned businesses together. The family joke was, if they are not together, they are on the phone with one another. Unfortunately, the cousins did not always follow example and get along. Even today, I remember the anger for Matt when he crayoned our entire outside walkway. I think he was only 4 years old, but some things you never forget. Years later, I was here in Charlotte when Matt and his wife Denise moved to Gaffney, SC. On a few occasions, I was able to put aside my anger over the crayon disaster and get together with them. We found out that as adults, we could be friends. Eventually they moved to Texas to start a physical therapy clinic. We have stayed in touch and have been a support for one another as parents of kids with special needs. In 2011, when I started the eSpeciall...

This article is in the January 2016 issue of Charlotte Parent, Carolina Parent and Piedmont Parent- but get it here first: Down for the Count: 5 ways for mom to survive being sick And hoping you will not need the information in this article!