Sunday, October 31, 2010

Saturday, October 30, 2010

Everyone for Ethan, Part 2

Please read this article - it really shows how a community can pull together to help a family. I also liked the creative way the high school principal decided to raise money.

Everyone for Ethan

Thursday, October 28, 2010

Thumbs Down

All three boys sucked their thumb from early infancy. Ben was the only one to give it up at two years old, go figure. Logan is five and sucking away. We have tried over the past few years to help him give up the habit.

With the start of Kindergarten and being around older kids, we counted on peer pressure to end the habit. We mentioned to Logan that his friends would make fun of him. Later that day, I heard Logan asking a friend if he minded the thumb sucking. His friend shrugged, and said, "I don't mind." Well that was the end of that idea.

At the dentist recently, I asked him to talk with Logan about thumb sucking. Logan shared his reasons for thumb sucking - it makes his mouth feel good. He suggested to Logan that he find another way to get to that happy place.

Well it seems the $1 Store is that happy place. Each day that Logan does not suck his thumb he can pick from a bag of goodies he chose from the $1 Store. So far it is working. I do think the talk with the dentist along with Logan's readiness was the best way to make this transition.

One mistake I did make in this plan, I did not qualify what types of items Logan could buy at the $1 Store, so we now have an arsenal of plastic semi-automatic guns, swords and daggers for him to choose from.

So now, I have gone from an unsure thumb sucking child to an iron clad warrior ready for battle.

Wednesday, October 27, 2010

Tuesday, October 26, 2010

Offering More Than Pumpkins

On Sunday we went pumpkin picking at Riverbend Farm in Midland, NC. It was our 5th year visiting this same farm. It features the usual activities like animals, pumpkins, hay rides and photo opps on tractors, but it also has something a bit different – slides made from old silos. And the slides are high and slick, making the ride fast and furious. I usually avoid them because they are a bit too fast for me.This year, I helped Ben up the stairs, but that meant I had to go down too. Ugh!

As we drove up this year, we saw it was even more crowded than years past. We stopped to ask where we could go for handicap parking. They showed us to a spot near all the action. After we unloaded, a woman came running up to us. In my guilt ridden mind, I thought she was going to tell us we could not park there. But instead, she introduced herself as one of the owners of the farm and told us that if there was anything we needed, to let her know. It was said with such sincerity and kindness, it left both my husband and I feeling so welcomed. That old saying, 'we felt touched' would be an appropriate way to explain the warmth we both felt inside.

Words of kindness really do go a long way.

Monday, October 25, 2010

Thursday, October 21, 2010

Stripping, but in a good way

About a week ago, Ben’s occupational therapist taught Ben how to take his shirt off. Immediately after the session with the OT still present, Ben crawled into the kitchen and proceeded to show me how he can take off his own shirt. Very impressive!

Last night, right before bedtime, Ben did his shirt trick again with a pajama top. Just took the darn thing off without any help. Needless to say he went to bed shirtless. This time Ryan got to appreciate our little Houdini.

And then this morning, I shared the story with Logan, who appreciates when Ben learns a new skill, and he started chanting: Take It Off, Take It Off. 

Well, at least Logan was showing support.

Wednesday, October 20, 2010

In Ben's Words

It appears that the school officials are determined to displace the current students in Ben's school for an alternative program. The PTA is fighting hard with petitions, letters, emails and calls. We are all attending a community forum tonight. Ben will be in attendance with me.

These are the words I plan to read if called on to speak:

Hi. My name is Ben. I am 7 years old. I am a 2nd grader at Oakhurst. I am in a SAC class, special academic curriculum.

Please help  me save our school. I am learning there. I am surrounded by people who really care about me and have created an environment where I am welcomed and loved.

My mom knows I am safe at Oakhurst. She also knows I enjoy it there. I smile when I get on the bus and I've been known to hug my teacher very tightly when I see her.

Please save my school for me and for the other children like me at Oakhurst.


Special Exposure Wednesday: Boys and their Firetrucks

Our neighborhood fire station turned 75 years old this weekend. They celebrated by throwing a big party - food, drinks and of course, firetruck visits. Ben made several trips to the firetruck.

Tuesday, October 19, 2010

Moving On

We've made the decision to get real beds for all the boys. All three are in toddler type beds now. Sean's bed is pictured here, and it was the crib that all three boys slept in from birth. It brings tears to my eyes to move on, but it means they are growing and becoming independent.

Incidently, this picture came about because Ben climbed up and then I asked the other two to jump in with him for a photo opp.

And as luck would have it, we found out that day that a very close family member is having a baby so we know the crib will stay in the family. I can at least visit it.

Monday, October 18, 2010

Magic Marker Monday: Bead Work

 Logan made these pieces of jewelry on his own.

 Check out other works of art at 5 Minutes for Special Needs.

Thursday, October 14, 2010

I Placed!

I started writing this post before race results were up, and I am trying to remain calm as I write this...

I placed 3rd in my age group

Okay, back to being calm.

Running a race a month this year has been challenging - it takes time and money - resources scarce in our household. Ryan has been supportive from the very beginning, traveling 2 hours  to another city and even walking in the first race on New Year's Day morning with three kids in tow.

My October race was in South Carolina, specifically, running over the Isle of Palms Connector near Charleston. Ryan agreed to run it with me, and we made it a vacation present for my 40th birthday. So we left the boys at home with an army of caretakers and stayed away for three nights.

The race course was definitely the most beautiful I have seen. The views from the bridge were amazing.

The rest of our vacation - watching a polo match in Hyde Park, hiking the wetlands, gazing at the stars on Sullivan's Island, eating pralines and fudge at the Market, sitting on the beach on the Isle of Palms and seeing the sunrise over the Cooper River Bridge (Ravenel Bridge) made it like a dream.

And when we came home, it was like we were long lost celebrities coming to visit our hometown. The boys could not get enough of us...and so back to real life again.

(For you skeptics, Mom, there were 22 females in the category that I received 3rd Place.)

Wednesday, October 13, 2010

Special Exposure Wednesday: Alone Time

Ryan and I had a long weekend in Charleston, SC by ourselves. To say it was magical would be an understatement. This is taken from Shem Creek with the Ravenel Bridge (a.k.a. Cooper River Bridge) in the distance.

Tuesday, October 12, 2010

Amazing Race - Continued...

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 2009. One of the realities that we had to face this summer, was the fact that there simply was not enough money to provide scholarships to all those who needed them.

Therapeutic Recreation’s Amazing Race will be held on Saturday, November 6, 2010. The race will begin in Charlotte’s Marshall Park with the first team leaving on their adventure of Uptown Charlotte at 9:00 AM. Prior to the race, all teams will participate in a pre-race meeting on Tuesday, November 2, 2010 from 7:00 – 9:00 PM. The meeting will be held at the Marion Diehl Recreation Center at 2219 Tyvola Road. At this
meeting, we will go over rules and expectations for the race, distribute team race numbers and t-shirts, and set the team start times for the race.

A little information on how start times will be determined. Since this race involves solving challenges, starting times will be determined by team scores in a Charlotte / Mecklenburg County Trivia Challenge. The higher the team score in the trivia challenge, the earlier the start time. So, brush up on your Charlotte / Mecklenburg County history, people, places, events and general knowledge!

Amazing Race Registration & Donation Information

* I have to admit that since they changed the date to my 40th birthday weekend, I am not participating. I do think it could be a lot of fun and a great way to raise awareness and funds for this wonderful camp. Ben has attended for four years now, always on scholarship. Read about his experiences here.

Monday, October 11, 2010

Magic Marker Monday: Portrait of Ben

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.

Friday, October 8, 2010

Grin Kids, Part II

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". Ryan's excitement could not be contained. He got to shake Mugsy's hand - it was a big deal.

Back to the beach. When I told Ryan that we did not miss Ace & TJ and that we could go to a "Meet and Greet" that very night for Ben's birthday, Ryan got nervous and almost backed out. He shared with me that he listens to them every morning and knows all there is to know about the show. (Married 12 years and the man still surprises me.) When we got there, I could tell Ryan was seriously unnerved. To take the pressure off, Ben and I went ahead into the restaurant to get a table while Ryan stayed behind with Logan and Sean at the outside playground.

When Ben and I walked into the outdoor beach restaurant, Ben was an instant celebrity. Ace & TJ and their whole crew surrounded him, took photos, asked about our family. And when they heard it was Ben's birthday, the attention was intensified. I have to admit, it was fun. It felt like the paparazzi had descended. Ben had the best look on his face - clearly he was savoring the attention. I casually mentioned that my husband was over at the playground and a big fan of their show. Immediately, Ace, TJ and Yankee Pete made their way over there.

Needless to say, Ryan was tongue tied when all three walked over to him. We had a great time that night - a perfect birthday celebration for Ben.

As for Ben getting accepted to the Disney Adventure...not this year. We will apply again for next year.

Thursday, October 7, 2010

Everyone for Ethan

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 in the community from family, friends, coworkers, acquaintances and even strangers!! It really has restored my faith in people and gives me a new found hope in our situation!! 

Check out the site on Facebook:

Tuesday, October 5, 2010

One Down, One to Go

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 and his classmates to thrive, a strong teaching staff with a supportive principal must be present. The teaching and administrative staff are superb, some being chosen for special education projects through UNC Charlotte. The school therapists, nurse, special education teacher and physical education teacher work with us to make decisions about the best ways for Ben to learn and grow. They are open to our suggestions and are able to make good recommendations for Ben. It is a scary feeling to put Ben on the bus and let him go away for 8 hours a day. He cannot tell us if things are not going well. We feel good putting Ben on the bus, knowing its destination is O---.  We know he is learning in creative ways. We know his teacher is knowledgeable about new teaching methods for children with special needs. We know that they care.

Although Ben does not speak, he is able to share his needs and wants fairly clearly. We know what he likes and dislikes. When Ben's bus pulls up to our door, he gets a big smile on his face. When his teacher came to his birthday party this summer, Ben attacked her at the door with so much excitement, she fell to the floor. It is obvious that Ben loves his teacher and school. He has made friends at school. When we are out and about in Charlotte, it never fails that a child will come up to us and say, "I know him, he goes to my school!"

There are over 30 children at O--- with special needs. The typical students who attend the school embrace these special differences. The school has built a strong diverse community of staff, teachers, students and parents.

We realize that the job ahead of you is difficult. Thank you for serving in the capacity that you do.

Monday, October 4, 2010

Sinking Ship

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 public meetings. Ben's school does not have as much parent involvement or neighborhood connections. I worry that even if we save Logan's school, Ben's school will still be caught in the aftermath of changes.

I hope that if I give Logan's school a life raft, Ben's school will get a flotation device. (Just trying to continue with this metaphor I started.)

Magic Marker Monday: Fish Hat

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

Friday, October 1, 2010

Found a Solution

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...