eSpecially Ben

Therapeutic Recreation’s Amazing Race What is Therapeutic Recreation’s Amazing Race and why should I register or donate? Therapeutic Recreation’s Amazing Race is a fun filled urban adventure where two person teams solve puzzles, figure out clues, find locations and complete challenges while discovering uptown Charlotte. Your registration fee ($100 for a two person team) will be deposited directly into the Therapeutic Recreation Summer Day Camp Scholarship fund that is administered through Partners for Parks, Inc. This dedicated scholarship fund supplies financial support for pre-schoolers, youth, teens and young adults who have disabilities to attend Therapeutic Recreation Summer Day Camps. During the summer of 2010, a total of $11,000 was utilized to provide financial support for participants to attend summer day camp. All scholarships awarded were based on the economic need of the participant. This is significantly less than the amount we were able to provide for the summer of 200

At a restaurant Logan drew the top portrait of Ben in one of the coloring books they give to kids to keep them entertained. Not to be outdone, Sean followed suit.

During the summer I wrote about applying to a special program called Grin Kids , an organization that raises money to send chronically disabled and terminally ill children and their families to Disney World . I have been waiting for a photo to go with this post, but seems like the photo is lost so here it is sans photo. On July 30, Ben's 7th Birthday, we were on our family vacation at Atlantic Beach, NC. Ryan had heard in Charlotte that Ace & TJ , the radio talk show hosts, who started Grin Kids, would be in Atlantic Beach sometime this summer. Ryan thought we had missed the weekend, but in listening to the local station I realized that we were exactly on time. Let me digress for a moment about my star struck husband. Ryan recently came home so excited about meeting Muggsy Bogues at the gas station. Muggsy was a well known NBA player for the Charlotte Hornets during their hay day in the late 1980's and early 1990's. He was most known for his height - 5'3"

This is from one of my dearest and oldest friends, Michele. She and I went to high school together many moons ago. We have managed to stay in touch over the years seeing each other when we can. Her son, Ethan, is a beautiful little boy with a very rare disease - only 100 people have it in the world. She and her family have had a lot to go through over the past few years. Recently, her friends got together to plan a fundraiser to help with some of the financial burden. She recently sent me these words and they affected me so much that I asked if I could reprint them and promote the fundraiser: Actually, we really have nothing to do with the fundraiser...I really have been very private about it but my friend from the gym is a bigwig at a bank so I went to him for advice about our mortgage...We haven't been able to pay it in a year! My friends from the gym all got together and came to me to tell me they were having it for us!! There has been so many kind and generous people

2008 2010

Logan's school has been saved! Our neighborhood and school community came together quickly and showed the Board of Education how they felt about the Montessori school. A sigh of relief! For one moment because Ben's school must be saved too. Here's my letter to Board of Education: Dear School Board Member: It has come to our attention that changes within the school system are being discussed.  The information shared through websites and the media is disconcerting. This letter is intended to express our considerable concern to the Board of Education and put forth our request to maintain O--- Elementary's current status. We are parents of three boys, two of whom are of school age. Ben is a second grader at O--- Elementary. When it came to choose a school for Ben when he was four years old, O--- came highly recommended. We have not been disappointed. Ben is in a Special Academic Curriculum (SAC) class. Ben does not talk and uses a walker to get around. For Ben an

Ever been asked the question:   Who would you save if you could save one person from a sinking ship?   Then the person gives you two impossible choices - your Mom or Dad, your brother or sister, your spouse or child (well that's not so impossible). Anyway you get the idea. In my September 30th post, Never A Dull Moment , I talked about how our school district is making proposals for changes in schools throughout our county. Both Ben and Logan's schools could be affected - moving Logan's school program to Ben's school; therefore, displacing Ben's program. Right now, all my energy and efforts are going toward saving Logan's school. My hope is that if it is saved, then the ripple down effect will save Ben's school. But there are no guarantees. Logan's PTA and our neighborhood is an organized community of parents, neighbors and businesses. The group will lead a coordinated fight with rallies, letters, emails and representation at community forums and p

Logan, age 5, made this at Theater Camp this summer. Click here to check out other works of art.

Between ramp and toileting issues at home, and our most recent school closing dilemma, finding a solution to one of these problems is a miracle. And I will take it! At the North Carolina Assistive Technology office in Charlotte, I was able to borrow a toileting system for one month to try it out. I think it will work for our home. It is easy to take on and off for regular use. Easy to clean and store in the bathtub when not in use. The design is great with enough support and safety features to keep Ben comfortable without falling. Our bathroom is teeny tiny - about 5ft x 8ft and that space includes a full shower/tub, sink and commode. This is the only bathroom in our home so finding something that was small and versatile was necessary. Now onto the the next problem...

Earlier in the week I actually had time to finish my 2009 Christmas scrapbook pages, something that's been on the "to do list" for, well, 9 months. That fact should have been a clue that something was coming. And of course it did, when I woke from a nap (I had time for one of those too) my friend called to deliver the disturbing news. Our school district announced in a meeting this week that they may be closing schools throughout the county. This means displacing students, moving programs and basically a big headache for families and students, not to mention the staff who work at these schools. For us, Logan attends a public Montessori school within walking distance of our home. This is one of the schools slated to close. They plan to move this program to the school Ben attends, about 20 minutes from our home. And what does that do to Ben? Not sure, but probably displaced to another school in the county. So our neighborhood is on fire, getting a plan together to fig

Apple Picking at Sky Top Orchard in Flat Rock, NC - At the end of the day, Ben decided to chomp down on one of the apples he found. Although, sitting in this first photo, Ben started out laying down with the apple. When Ben tired of the apple, he let it roll down the hill. (This may seem like an ordinary thing, but for Ben it took a lot of coordination to eat this apple on his own.)

Ben brought this home from school on Friday. The class is doing a unit on friendship. Earlier in the week, Ben's teacher told me Ben got in trouble for putting Lorena's whole hand in his mouth. The teacher said he likes her a lot - I guess that's one way to get her attention.

This weekend I ran my ninth race of the year - Run for Mercy - at Reedy Creek Park. It was a 5K trail race, organized by an international organization, Mercy . They raised over $21,000 for the local chapter. If you are not familiar with this organization, check it out. They do amazing things for girls in crisis world-wide. And they also know how to plan a race. With "door" prizes, kid games, a fun run, kind-of superheroes ( Captain Salvation , Monkey Joe and the Cow from Chick-Fil-A ), food and drinks, the race was a true family event. The race was well-orchestrated with water available on the trails and volunteers directing us at every turn. I have been running these trails with a friend so I was prepared for the terrain. The best part of the race was Ryan and the three boys cheering me on. It was a big boost to know that they were waiting for me at the finish line. The kids took part in the Fun Run. Sean ended up running way ahead. He rounded the bend and the trees

Ben has ticklish knees and it never fails to get him going! Click here to see other great photos.

Sean is 2 1/2 and his speech is okay, but not great. Probably in time, it would all come together, perhaps needing speech when he reached Kindergarten. But with information and resources at our fingertips, we had his speech tested. As expected, his expressive and receptive language scores were good. Sean's score on the articulation test was  concerning. This was not a surprise because he leaves off the final consonant on most words - Ben is 'Be', Chair is 'Cha' and so on. Another concern is using correct sounds for words. Car sounds like 'Har'. Ben's speech therapist, Kenyatt, can come early and see Sean at our home before Ben's appointment. Sean is very familiar with Kenyatt, and I have introduced the idea to Sean as "his turn" to work with Kenyatt.  When I have tried to show Sean how to make a specific sound, he is eager to learn and tries to move his mouth and tongue to make the sounds. I am glad we have caught this early. I belie

Sean, age 2 1/2, is beginning to scribble. Click here for other works of art.

It was one year ago today that I started this journey into blogging. I really had no expectations about where this would lead. I didn't know much about it. I know a bit more - there's loads of talented bloggers sharing information, making connections and opening up a new forum for parents with special needs children to share their experiences. Unexpectedly, I have gained more from this experience than I have given: 1.  I am on a roller coaster - Our experience seems more intense, faster paced and definitely mind blowing at times. The posts help me see what our lives actually look like. Finding out about seizures one day, hearing about huge progress in speech or occupation therapy the next can be exhausting. The posts are a reminder that I am on a roller coaster ride of emotions and that it is okay to slow down or even get off the ride for a little while. 2. I feel supported - The connections made through the internet are amazing. To know there are other families facing

I attended Ben's school's PTA meeting this week. I am on the board as the Special Needs Liaison. I came up with that title last year, and I am still not sure what exactly my role is. Last year, I spent most of my time learning how the group worked and seeing what the school needed. I know from experience that newcomers with ideas can easily be shot down if they do not know the customs of the group. I planned a fund raiser for the school, made posters advertising Box Top collection, wrote Ben's teacher's monthly newsletter and helped the physical education teacher with Water Day. I feel like I did my time. So this year, I felt more comfortable asserting myself by planning an event for the students with special needs. Monkey Joe's is a place where kids go to play video games and run, jump and bounce through obstacle courses. Or if you are Ben - you go there to eat pizza and drink a slushy. Every third Wednesday night, for one hour, is free for children with speci

Sean, age 2 1/2 Sean was very aware of his two older brothers starting school last week. He was not sad to see his brothers go as much as he wished he could be going to school as well. On Friday, the day set for him to start preschool, I made sure to remind him that he would be going to school that day. Sean's response, "My turn!" When I dropped him off, he walked ahead of me, never looked back and was not happy to leave four hours later at pickup time. He is the independent one, I should have seen it coming. Click here for more photos.

Since Ben was two or three years old, we have joked about finding a Boot Camp for him. If you keep up with this blog, you will know that Ben is very good at pretending he cannot do certain things. He is tricky and successful in fooling the most seasoned professionals and parents. When Ben was three, he napped in a pack and play, near the window, about one foot away from a table with a few items on it. Ben could not stand, walk or pull up, or so we thought. One afternoon I walked into the room Ben was in and found the items from the table on the floor. I had not noticed them there when I put Ben down for a nap. I immediately blamed it on my husband. Who else would have carelessly left all those items on the floor? It did not cross my mind that it was anyone but Ryan. Next day, same thing happened. The items on the table were on the floor. It was strange and unsettling. And I could not blame Ryan anymore. He had cleared his name. This went on for a few more afternoons. I checked th

Ben, age 7, made these at school with construction paper, crayons and tissue paper. Click here for more works of art.

Ben is having major turnover in private physical therapists. He is still at the same agency, but the therapists are all moving. To the agency's credit, they have found qualified energetic PTs for replacements. I always give a new therapist my talk: Ben, although super cute, is a conniving manipulative 7 year old. Don't believe anything he tries to get past you. Be firm, yet loving with him. If he rubs his eyes, he is faking tired. If he yawns, it's the real deal. And after saying this, no one believes me until they witness it themselves. Ben pulled a fast one yesterday on a newbie PT and pretended he could do nothing. When it came time to leave, he walked one handed 15 feet, then up and down stairs to the car, and for his finale stood leaning against the car unassisted. Luckily, the therapist was watching.

If I have been neglectful, it is because of my recent addiction to the Twilight Series . I am about to read the fourth and final book. I expect to go into a depression when I am finished. I usually do after a series - I could not read for months after Harry Potter's finale. Hopefully, I will be able to keep going this time. I just need to find out if Bella finally becomes a vampire.

Logan's first day of Kindergarten and Ben's first day of 2nd grade. Click here for more photos.

Many years ago, I heard this story: A father and his small child are riding in a hospital elevator with another person, not known to them. The child was acting up. In close quarters, it was very disruptive. The father did not address the behavior, did not seem to even notice. As the elevator doors opened, the stranger in the elevator, made a snide comment about the child's improper behavior and lack of parental discipline. The father replied, "I am so sorry. I am just not sure how to tell him that his mother has passed away." This summer, there were two times where I made assumptions about a situation without having all the information. Although I try to keep the above story in mind when assessing any situation, being human I sometimes jump to conclusions without having all the information. Ironically, in both situations, it was not obvious to me that people with special needs were involved. Luckily, in both cases, a positive connection was made. After I figur

 With a couple of paper plates and colored foam board, you too could have some monkey business. Ben brought this little guy home from camp. Click here to see more works of art.

When Ben was little we were never sure what his needs would be as he got older. We hoped that he would begin to talk and walk. With such a vague diagnosis, we never knew how Ben's development would progress. The idea of needing to change our home to meet Ben's needs was a fleeting thought. If Ben does not walk , was not something we spent a lot of time contemplating. Avoiding this thought was easier. Even if Ben did not walk, the future seemed a long way off. Ben is seven now and the unknown future is here and more apparent. The physical and financial problems will be major issues for us. When will we make these changes? How will we cope with these changes? Where do we add a ramp? How do we enlarge the bathroom to fit an adaptive toilet? Will our car need to be retrofitted for a wheelchair? How do we pay for it? As difficult as these decisions and financial problems will be, dealing with the emotional issues associated with these changes will be most challenging. It mea

On the beach at Okracoke Island in the Outer Banks of NC Check out other photos at www.5minutesforspecialneeds.com

That is the question that I am currently stressing about - seem silly to you? Yeah, me too, but I still feel the need to stress about it. Early on in my blog life, I wrote "Dress for Success" , a discussion about how important it is to help your child look the best she or he can. This summer, after being nagged by a few (Ben's Dad and Ben's grandma), not that I am calling anyone out, mind you, I decided to let Ben's hair grow out. I usually keep it very short. It stays neat, no gel or combing needed in the rush of morning chaos. Now school starts in a week and I am rethinking the whole "growing it out" - I know it is in style, but does it look more messier than "cool?" Will this look make him look odd or strange rather than fitting in with current fashion? Tonight I asked Ben what he wanted. Funny kid, he reached out and grabbed my nose...And gave me an idea. Ben makes choices very well and he always seems to know what he wants. I am go

Let's just say I finished in a respectable amount of time and that I look forward to running in cooler weather. And perhaps it was divine intervention that I forgot to collect my timing chip at check-in...so no one really will know my "respectable" time. You will just have to take my word for it. To hear how I got to this point, read about my 12 Race Challenge .

A hot and muggy afternoon with bored kids gave me the courage to drag out this book. It turned out easier than I thought, got everyone involved and had lasting effects because the boys played with the airplanes when they were finished. Click here to check out other works of art.

Check this blog entry out from the Huffington Post . It reminds me that we are constantly learning, sharing and giving, especially when we allow our hearts and minds to be open.

How do you tell the difference between a bad habit and a good routine? For the past several months, at about 8pm, Ben crawls up on the couch with my husband or me, cuddles and falls asleep within the hour. It started out with a lot of oohs and ahhs from us - snuggling with Ben is very sweet. If we move him too early, he gets out of his room and crawls right back with us as if nothing happened. I do wonder if we are doing the right thing by allowing this behavior. Questions enter my mind - Do I want this same behavior six months from now? Not sure. Would I allow my typical sons to do this? Definitely not. But then I also think about how life has changed in the past year with respect to Ben's sleep schedule. He is not getting up many times a night due to nasal congestion. He is going to sleep at a reasonable hour and sleeping until morning. Ben's snuggling could be meeting a need - spending time with us without his brothers. Ben is in school or camp all day, then typical

Growing up, my parents gave us kisses on each cheek and called them Double Whammies. Logan photographed our version. Check out other photos at www.5minutesforspecialneeds.com

Ben having a good ole' time at camp. Ben attended 6 weeks of camp at Imagination Station this summer, a camp coordinated through the County Parks and Recreation   - Therapeutic Recreation Division. Each week, Ben swam, participated in music therapy, My Gym , arts and crafts and story time. A field trip to local amusement parks and other fun places was also part of their schedule every week. Because the camp director is educated and trained as a recreational therapist , she understands the needs of children with disabilities. A consistent, predictable schedule was set for the week, but specific activities changed often throughout the day to offer variety and keep the attention of the campers. Ben loved this camp. When I came to pick him up, he was never ready to leave. One of his favorite places was the playroom filled with tunnels and slides for kids to climb and hide. Although Ben mostly observed the kids running, he enjoyed it so much. So many of his fellow campers woul

Camp sponsored a day-long "Camp Fest" with water slides, magicians, dancing and ...a caricature artist. Click on the image to see other artists' work.

Each year a local church sponsors a week-long camp for children with special needs. This was Ben's 4th year attending Rainbow Express . What makes this camp so different from others is that it is planned through the youth ministry at the church. The teens of the church coordinate all the details, activities, serve as the counselors, and prepare a new puppet show each day. The adults in the church serve as nurses and additional staff. Many take their week of vacation to volunteer at this camp. Max (Buddy), Ben and Rachel (Counselor) Over 100 campers attended this year. Each camper is paired with a teenage counselor, and some campers also have a Buddy, a peer who has typical abilities. Ben's counselor was Rachel, a rising freshman in college. Ben's buddy was Max, a another super-cute six-year old redhead. It really is impossible to describe how wonderful this camp is for everyone who participates, volunteers or parents a child who attends. I do know that Ben meets

Just having one of those moments. Check out other photos at www.5minutesforspecialneeds.com

My mom sent this link to me recently. It is pretty wonderful and really unbelievable. Take the time to watch the video and then check out the blog: Carlys Voice .

Ben's Aunt Olivia and Grandma made this cake for his 7th birthday. Check out other works of art at www.5minutesforspecialneeds.com