eSpecially Ben

Wrights Law had a recent and worthy post about working with the school system:  Ask the Advocate . A good read for any parents with kids in the school system.

We spent some impromptu time with one of my friend's boys a few weeks ago at the USNWC . Our boys did not know each other, but they made friends quickly and were running around and having fun before we knew it. My friend's oldest son who is 11 years old came over to Ben several times. His approach was caring and open. I showed him Ben's NOVA Chat . He quickly understood how it worked and asked if he could make a button. With little help and certainly no input from me on what it needed to say, he added a button that said, "You are a good frend." I was shocked and warmed by this child's thoughtful and loving way. Not wanting to shed tears at the whitewater center in front of this boy (and scare him off), I explained that this was so helpful because we wanted Ben to have conversations with his friends and family. This was a great start to that, and of course, a lot more too.

sa·ga Noun A long story of heroic achievement. A long, involved story, account, or series of incidents. ------------------------------------------------------------------------------------------------------------ Who will achieve heroic status in this saga? Like any project, we have different approaches to the situation. I am of the "let's get 'er done" mentality while Ryan takes the "think about it, sleep on it, think some more and then wait" approach. This will be a saga. We met with an architect friend this week. He surprised us with some wonderful news - he is trying to get some of the materials we need donated. It seems that he has been successful already with a few of the items. He may have come up with some cost saving ideas as well. Because we knew this meeting would require uninterrupted discussion, we had a sitter for the kids. I told them that they could not talk to us while we were meeting to talk about the bathroom. They all under

Many weeks ago, a friend's post on Facebook spoke about her daughter's extended visit at the hospital. Her daughter has had many surgeries, has multiple special needs and requires serious medical care. Several friends and family sent well wishes in the comment section. One person wrote, "Your daughter is so lucky to have you." Of course this person was offering support to a friend, but my immediate reaction was, "No, you have it backwards. We are the lucky ones."

I read this just now and had to share it: 37 Random Acts of Kindness This one just might inspire you to act.

The physical therapist at school started using the  Dynamic Stander  with Ben and he seems to enjoy being in it. If he chooses to, he can use his hands to roll the big wheels and move around the classroom. The operative word is "choose". The staff will have Ben use the stander one hour in the morning, and eventually add another hour in the afternoon.  I am hoping we can borrow it for the summer. Cool gizmo!

Kindermourn is a local organization that helps families through the grieving process by offering support groups and counseling. Hope Floats is their fundraiser, a duck race at the US National Whitewater Center . We attended the event last weekend. 15,000 ducks in a cage were lowered down from a crane and released into the water. The winning duck brings in $3500. The little yellow dots you see in the photos are the rubber duckies, think Ernie and Bert in rub-a-dub in a tub. Not at all enthused by the ducks, Ben got a little love from the same dog we saw a few weeks ago at the whitewater center.

Ben will be 10 years old this summer. He is getting taller, stronger and more independent. When I see him do something almost quite age appropriate, I am stopped in my tracks. This day was one of them. I never dreamed that Ben would sit at the table and eat his snack and drink without supervision and without swiping the drink and plate off the table. If he looks a little proud in the photos, you are correct. He knew he was doing something so cool.

We were fortunate to be given tickets to UNC Charlotte's first football scrimmage ever. This fall will mark the first official season of football at my Alma mater. The sport that has been cause for decades of controversy and elaborate, yet false legendary stories about why a team was not possible at the University.

Thursday, April 25 is  Pay It Forward Day Pay it Forward Day is in its seventh year, and on Thursday, April 25th  you and your family will have the opportunity to participate. Inspired by the book and movie, ‘Pay it Forward’ involves people doing random acts of kindness for others without expecting anything in return. Instead, recipients are instructed to ‘pay the kindness forward’ to others in need, essentially creating a positive ripple effect of giving.

Ben's visit to the dentist to show off his new 1/4 length front tooth proved informative and anticlimactic. After a quick look and an X-ray, it was determined that the root was fine. The dentist explained in a round-about story that included the Baseball Hall of Fame that kids have been cracking their teeth for as long as kids and teeth (and baseballs) have existed. Many do not ever get them fixed. A bit confused about our options after that story, I still asked what the process would be for replacing the tooth. The bottom line was that with a bond or composite "glued" to Ben's tooth, it will most likely come off again in any number of scenarios. We agreed to try it in the near future, possibly this summer. The procedure is done in the office, but Ben will have to stay still and that's why I will call in the big guns, a.k.a. Ryan. Eventually, a cap will be put on the tooth, but I believe Ben will have to be put out and based on the dentist's recommendation

I had a leisurely after school time with Ben because Ryan was home and stress free having finished a couple of exams and feeling caught up on school work. He picked up Logan and Sean from school while I took Ben to physical therapy. As I was getting Ben out of the car and chatting with the PT, I noticed that I could not see one of Ben's front teeth, the cute adult one that had grown in over the last year. I lifted his lip and 3/4 of it was missing. (I originally reported 1/2, but after Ryan's official inspection he reports the higher number). Yikes! (I used a different choice word at the time, but "yikes" suffices for now.) We have a dentist appointment for this coming week to discuss a plan. It seems that this happens often with kids. How come it is the first time I have heard of it? I am sure everyone will come out of the woodwork now with stories of broken teeth. After speaking with Ben's teacher, she did say he fell on the playground while trying to go

On Easter Sunday, I asked Mr. Terry, the boys' Sunday School teacher and the church's photographer extraordinaire, to take a family portrait. To no fault of his own, these are the results of that session: Finally one without funny faces, hair pulling, kicking or hiding, but not nearly as fun.

I lost 4% of my body weight in 28 days through D ietBet  and won $43.  I started another one on April 3. Care to join me? Now that I have played I can share what I have learned: 1. A blogger named Beth started the March  DietBet  game. She set the bet at $25 - meaning if you wanted to join, you had to pay $25 into the pot. Everyone put in the same amount. It was open access, meaning anyone could join. 2. Everyone had the opportunity to win. If you lost 4% of your body weight in the 28 days, you received an equal share of the pot, minus D ietBet's fee (5-15% depending on size of bet). For this DietBet, 199 people met their goal, that is almost 50% success rate. Over 2500 pounds were shed between 405 people over 28 days. 3. Dietbet has a simple way to keep participants honest. Send in 2 photos in the beginning of the contest and 2 photos at the end. Both photos are on the scale, one a closeup of the actual reading on the scale, the other a full body of you on the sca

You know that age old saying about be careful what you ask for...because you just might get it. I have been talking about building an accessible bathroom for Ben for a few years. Finally, it looks like it will happen. And now I am saying, ugh! It is a lot of work to make decisions that will have an impact now and for the future. Currently, we have a 6'x8' bathroom with little to no room to maneuver. As Ben has grown taller and heavier, it has become increasingly hard for me to lift him onto his special toilet seat and get him in and out of the bathtub safely. We knew something would have to change, but we were unsure how it would. Then, our state implemented a program that provides services and support for individuals like Ben. I heard that we would be eligible for financial assistance to modify a bathroom, but I truly did not believe it would ever happen. Alas, it has! In the past two weeks, I have met with two state-approved contractors. I gave them the big picture - my v

My business partner has a saying that he uses often in our team building and leadership activities with groups, "Trust the Process." Tracy usually shares this tidbit when the group is struggling through an activity or wondering how solving a puzzle will help the group form a more cohesive bond. I am trying to keep this philosophy as we go through more tests to figure out what Ben's actual diagnosis may be. In my post, The Allusive Diagnosis , I mentioned that Ben's tests revealed a strange discovery - they located an abnormality on the X chromosome, one usually connected with Retts Syndrome . Last month at the geneticist's office, we learned that Ben's gene abnormality has never been seen before. I don't thing they mean, just in their office. I think they mean ever, anywhere. This week, I was tested to see if I have the same abnormality. If I do, then "the waters are muddied," according to the doctor. It could mean that it is just an abnorma

Sean turned five this week. Birthday boys and girls are treated like royalty at our house. On the morning of Sean's birthday, Ryan woke him early and took him out for breakfast before school. Ryan is ridiculously busy with his own school and any alone time with him is treasured. Next was my turn to treat the little king to birthday bliss. I spent the entire morning with Sean at school. I participated in a celebratory birthday ceremony in true Montessori style. After setting up the sun and calendar months in the center of a circle of classmates, Sean walked around five times while holding a globe. At the same time, I talked about his favorite things and showed baby photos he had chosen. For these few minutes he was the center of the universe. That night, Sean chose Domino's Pizza for dinner. We sang "Happy Birthday" and ate cupcakes. At some point during dinner, I asked him what was the best thing that happened to him that day. Ryan and I amusingly glared at ea

Logan was sure not to get pinched with this green face. A family friend, BOB, invited us to a party held by the Irish Society of Charlotte. Ben loves him some BOB. I think they hugged for 10 minutes. Or maybe Ben wanted some beer.  As usual, Ben became a celebrity at the party and got to choose the winning raffle ticket. A young girl won $106! They taught us a jig - that's me with the jeans on. It was a fast paced dance, and it was fun. Ben was invited up with the band to help keep the beat. They under-estimated him and he almost took down the mics, speakers and music in one swift pull. Luckily I am fast on my feet while doing the jig. The band. The real dancers. Unbelievable. We visited the US National Whitewater Center to see if the water really did turn green on St. Patty's Day.  We saw a giant Leprechaun and I swear I saw a tiny one riding a moped...but no photo to prove it. LUCKY MEETING YOU At the Irish party, two different sets

This post could have been written many weeks ago, but I have not been able to get my head wrapped around it. I have gone through emotions ranging from disbelief, shock, guilt, optimism and then shock all over again. I was hesitant to share the news if it was untrue. But there have been enough people involved in this process that I think it okay to make it public. Ben can read . I mean really read - sight words, sentences and short paragraphs. We have not tested further than that yet, but I am certainly determined to see just how much he knows. It started again with the NOVA Chat (I swear I am not a paid endorser) and testing Ben on sight words. It appeared that he knew them all, even when I added ones that I used with Sean. The speech and occupational therapists asked Ben questions based on books and videos. A couple of times, he answered without anyone reading the question to him. A fluke, right? It happens a few times and you say, "What the hay, let's give him a sente

Ben's former physical therapist sent this article about a new  Multi-Sensory Room  opening in Charlotte.  It is connected with Easter Seals/UCP and will be available to children who have sensory issues. There will be a fee to use the room. We may have to bring Ben here to check it out. I will write more about it then.

Logan came home a few weeks ago talking about a Class Dojo and I had no idea what he was talking about. He kept asking, "Can we do it for us - me, Sean and Ben?" He mumbled on and on about points and jobs. I shook my head a few times, mumbled back and hoped it would go away. While volunteering in Logan's class yesterday, I was able to see the Class Dojo in play and asked the teacher how to find it. Basically, it is a point system on the computer with cool looking monsters. Each child gets a funny looking avatar. Depending on what jobs, tasks or areas the teacher or parent puts in the system, a child can get points for doing something, displaying a certain behavior, etc. A reward for gaining a certain amount of points in a specific amount of time can be put in place. For Logan's class, when he reaches 20 points in one week, they get to do two less "works" (Montessori system) on the Tuesday following. Points may also be taken away. I am not sure how

After eating delicious zucchini patties at Ruby Tuesdays many months ago, I decided to make them on my own. Sometimes recipes are available online so I did a search and found one on a site called, Beth's Journey .  Impressed with the recipe and the very delicious zucchini patties, I read through the blog. Since she was a child, Beth has struggled with her weight. Her blog is about her efforts to live a healthy lifestyle. Since 2009 she has lost a significant amount of weight through Weight Watchers and exercise. I liked her style of writing - honest, open and helpful, so I signed up to receive her posts. Her most recent post is about a contest that begins this Monday, March 4. The contest, also called Social Dieting , is run through  Diet Bet . The basic premise is that participants pay an entry fee into a pot, then over the course of 4 weeks each participant tries to lose 4% of their body weight. All who succeed split the pot. I am always a sucker for a fun way to lose weigh

I had a working lunch meeting today at one of my old haunts near the university. I arrived early and immediately realized that the only other people in the cafe were a group of adults with special needs. I said hello, grabbed a menu and quietly watched the group and its staff from my seat by the window. Not many minutes later, the group started to leave and one of the two staff members yelled to a group member who was walking out the door, "Don't you want to get a magazine? Take whichever ones you like." Then he pulled another member of the group toward him, gave him a hug and said the same thing about the magazines to him. His voice was loving and gentle, and I was overwhelmed with some emotion I cannot begin to name - happiness, gratitude, relief? While I had been observing this group, I had been judging too. I thought I would "catch" the staff say a mean word or act inappropriately with their special group. Just before this staff member closed the door to

Ben did not want to be left behind. This is a very rare photo: Ben with a hood on. Ben saw the falling snow as just one big snack, free for the taking. And there goes the hood.

On a day when there was no school, I took the kids to the YMCA to play basketball while I worked out. Cameron, our newest community worker and also a gift from God, was with us. It was her first time experiencing the YMCA with Ben and his celebrity status. It was also her first time seeing him throw a tantrum. When it came time to leave, Ben decided he did not want to leave. He successfully threw himself on the floor and refused to be lifted into his walker. At almost 65 lbs, he can decline to move his body, and we have to oblige. I was frustrated with him. The other kids were waiting outside, and we needed to be somewhere else soon. I told Ben we were leaving and I watched hidden, behind a column as he pulled himself into a chair and sat very nicely. He did not care one iota that his family had left. At this point my frustration subsided and I realized he wanted something and was determined to get it. I took out the NOVA Chat and quickly plugged in a few feelings buttons. When a

On Valentine's Evening, Ryan and I went with another couple to The Wine Palette  to eat chocolates, drink wine and paint "four letter words." With 10 other couples and the guidance of the artist in residence, Raffaele, we determined our colors and words. It was amazing to see how creative some people were with their designs. It was a supportive environment and everyone was there to have fun, laugh and relax. If you do not have a business like this in your area, Michael's has all the supplies you need for a creative date.

Ben's new physical therapist suggested we meet at our local YMCA's pool for therapy. Knowing how much Ben loves the water and how good this type of exercise is for him, I asked permission from the Y and received the "nod." Ben sees Gale once a week and it has been an overwhelming success. Ben shows us kicking and paddling skills that can be shaped into a nice doggy paddle, a very respectable way to get around in the water (I don't know from personal experience or anything). Ben uses the life jacket at all times and he has learned how to roll himself over to get his face out of the water. He practices walking on the stairs, monkey walks on the side of the pool and jumps in with Gale after each set. They have worked up to almost an hour of swimming, doing 4 repetitions of walking, climbing and swimming. The best part is Logan and Sean realized they could join Ben in the pool too. Being in the pool together is great for all of them. And

On the same day Ben received the Principal's Award, he also brought home the Silver in Basketball at the Special Olympics. Frankly, I was skeptical about how this was going to transpire, but I left impressed with the program. The focus was on skill building. Ben had two events - catching (photo above) and dribbling. He was given a minute in each event to catch the ball (catching) and then push the ball down (dribbling) as many times as he could. My biggest surprise was that he seemed to enjoy himself. After witnessing baseball, bowling and boccie ball, I was sure another "B" sport would bomb. He was engaged and happy - two factors that are high on my list for success for anyone. If you have concerns about how Ben may be handling receiving so many awards in just one day, you can see in this video how he gave up the Silver quicker than almost humanly possible:  Medal Ceremony

This year, the new principal at Ben's school started an awards program based on character traits such as hope, courage and citizenship. The award is given monthly to a student on each grade level and one child in the Special Academic Curriculum, in which Ben is a student. Ben received the award for January's Principal's Award based on the character trait determination . The nomination form read: Ben shows determination in everything he does! Whether he is determined to walk down the hall or to sit in his favorite chair, he perseveres. He also shows determination in his work by choosing answers of his choice and working hard until he is successful. I am proud of Ben and very glad the school includes the SAC program in these activities. I am even more astonished that I caught this photo at the very moment before Ben tried to rip the certificate out of the assistant teacher's hand. He looks so angelic holding his certificate...but if I had taken subsequent shots,

World Winter Games - Special Olympics Read Rory's story and be sure to watch the video on the right hand-side. It is a commercial for Special Olympics - truly remarkable.

Between illness, babies being born, ice storms that never truly hit, grandma and uncle visits, swim meets and life, it has been crazy around here. I know some of you have asked about Ben's school dance experience...I will get to all of it. Just need a moment to catch my breath. Here's a photo of the USA Developmental Sled Hockey Team (they are hoping to get on the US Paralympic Sled Hockey Team). They lost against the Russian team on Saturday night. Great game!

Let's dance, put on your red shoes and dance the blues...* Ben's school is having a dance for 3rd-5th graders this afternoon. Rather than make the decision for him to attend, we posed the question and then gave him the choice on his NOVA Chat. The overwhelming response, 100% of the time, was YES. His Occupational Therapist asked the question a few different ways to be sure his answer was consistent. It was every time. Ben's wonderful new community worker is attending the dance with him. Luckily, she is very excited to go and with her outgoing personality, Ben will have his dance card filled. *Words are from David Bowie's Let's Dance,  1983

Inspirational and beautiful story. The Long Brothers

In the last week, my husband lost his jacket and cell phone and Logan lost his winter coat. I have looked in lost and found at Logan's school, called lost and found at Ryan's school and I have grumbled and mumbled quite a bit over these missing items. Today I went to the YMCA's lost and found, hoping to find Logan's jacket. As I complained to the person at the service desk about my family's great skill for losing things, I watched her take out items from the large bin. Something caught my eye. No, it could not be. "Uh, could I take a look at that gray jacket? I think that one is mine." Sure enough, my gray zip-up hoodie was in the lost and found bin. As always, I am humbled...and glad to find my favorite jacket.

I have so much to write, but I think I have been afraid that if I do put it down, it will be real and perhaps too overwhelming for me to deal with right now. It has been almost 2 months since Ben has started using the NOVA Chat 10 , a communication device on an Android platform. Like an iPad, but different. The results we are seeing from Ben using the device have been incredible. He is making choices about his meals, activities and location. Having these options and ability to choose must be liberating for him. When we decided to order it for him, this independence was all I had in mind. Then, a few weeks before Christmas, Ben did a curious thing: using his hands and feet, he put down his two foot plates on his wheelchair deliberately. From then on, I asked him to do the same thing and he would. This piece of communication resulting in an action started me thinking. We added reading comprehension questions to the device. We read a children's board book and then asked Ben a

This request is from Ben's Physical Education teacher. She also is responsible for all the Special Olympic activities Ben does throughout the year. If you are not familiar with  DonorsChoose.org , check it out. It is a remarkable site. Hi Friends, I want to make sure my students have the materials they need to succeed. So I've created a classroom project request at DonorsChoose.org, an award-winning charity. I'm asking for donations of any size to help my kids. For the next four days, any donation you make to my project will be doubled! If you know anyone who is passionate about education, please pass this along. Your donation will brighten my students' school year, and you'll get photos and thank yous from our class. Here's my classroom request: http://www.donorschoose.org/ project/pads-and-pods/942518/ To have your donation matched dollar for dollar, enter the match code INSPIRE on the payment screen. This awesome match offer lasts through January 10. My stu

Ben wears this brace on one of his legs almost every night. It was made by KMO - Knee Management Orthosis . Its purpose is to stretch Ben's hamstring muscles. We wait until Ben is asleep before we put it on because it does limit his movement. Imagine your leg in a cast and you cannot bend at the knee - that's what it feels like for him. Combined with his new ankle foot orthotic braces, Ben is standing up straighter when he walks and his heels are striking the floor when he makes a step. Ben manages to still get around with this brace on. On too many occasions, he has gotten out of bed, opened the door to his brothers' room and crawled up into bed with Logan, effectively waking up the entire household. This is all done with one leg in the brace. If Ben senses that we may try to put it on him, he pulls his knees tightly into his body and it takes strength and emotional toughness to get that brace on him. We know it is doing him good, but we still feel bad when it ha