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Showing posts from 2012

Getting His Just Desserts

The day after Christmas, we spent an hour walking on the greenway that meanders through our city. The large fountain was empty for the winter and Logan and Sean saw this as the perfect opportunity to race through it. Ben watched them, giggled a bit, then suddenly went crazy trying to get out of his chair. Interested in getting Ben some walking time in, I obliged by getting him out of his seat. At the moment he was free of the chair, Ben pulled me in the direction of the fountain. (Imagine a large dog pulling its owner - that's how I felt.) We climbed over the fountain wall and kept walking across the circle. I thought Ben wanted to be a part of his brothers' shenanigans, but I was wrong. When we reached the other side of the fountain, we climbed over the wall. Ben kept pulling me in this same diagonal path he had chosen. If we kept going, we were going to hit the street, not a place I wanted to venture. Where the heck was this kid going? He clearly had something on his mi

Christmas Carolers!

It was icy cold with a slight breeze, but we braved the elements and sang our favorite Christmas Carols for our community and neighbors. Our first stop was at a house that requested our performance. They had Trader Joe's cookies waiting for us. People are not used to carolers and we get many reactions from our impromptu audiences: some listen while standing next to the window, others grab family members from inside so they too can hear the singing, while others walk quickly back into their house after one song. For the most part, everyone enjoyed our singing. I can understand it is awkward to stand there while a group sings to you a bit off tune. The kids love it - they run ahead, ring the doorbell and then belt out the words to Jingle Bells and Rudolph .  Each year, we gain a new family to our group. Once you start this tradition, it is hard to let go. Ben is in the left-hand corner of the photo hugging Elizabeth, his former teacher.

One More Chance

Ben made a last ditch effort tonight to repair his relationship with Santa . As soon as he saw the jolly man in the red suit, he jumped into his arms...and gave him a hug.

Annual Graham Cracker House Party

Log Cabin: The pretzels were part of our healthy snacks, but this kid had  better plans for them! Her parents are in the construction business. For as long as I can remember we have hosted a Graham Cracker House Party for our friends and neighbors. This year we had 14 kids (and their parents) participate. Everyone helps with supplies, setup, building, decorating and cleanup. This year, we had Mimosas for the parents - a great addition that I highly recommend. Expect some chaos. If you want to host an event like this, the list of candy, supplies and the instructions to give each parent are below. My nephew's birthday is in December and my sister hosted a birthday party for 13 boys, and they each made their own house. My sister recommends getting two mixers and have the Royal Icing II dry ingredients measured ahead of time. I did this, and it cut down on time because once the kids start building and decorating, they need a lot of the "glue" quickly.

Merry Christmas & Happy Holidays!

Hoping everyone has fun with their family and friends!

A Letter From Heaven

There are no explanations, ways to find purpose or reason in what happened in Connecticut today. We cannot wrap our minds around the tragedy and our hearts hurt. Anger, blame, disbelief, sadness and the need to hold our own loved ones closer are the prevailing feelings. I found this poem and wanted to share it here: To my dearest family, some things I'd like to say  But first of all, to let you know, that I arrived okay. I'm writing this from heaven, here I dwell with God above  Here, there's no more tears of sadness; Here is just eternal love.  Please do not be unhappy just because I'm out of sight;  Remember that I am with you every morning, noon, and night.  That day I had to leave you when my life on earth was through  God picked me up and hugged me and He said, "I welcome you."  "It's good to have you back again, you were missed while you were gone,  As for your dearest family, they'll be here later on.  I need you here bad

Should We Expect Coal?

Caught on camera...Ben biting Santa.

Enduring Love

This is Ben with his former preschool teacher, Elizabeth.  When she walked into the room, he had eyes for no one else.  You Never Know You never know when someone might catch a dream from you. You never know when a little word or something that you might do, may open up a window of a mind that seeks the light. The way you teach may not matter at all, but you never know, it might. And just in case it could be that another's life through you might change for the better with a broader, brighter view. It seems it might be worth a try to do what you know is right. The way you teach may not matter at all, but you never know, it might.

Free Online Software

My mom mailed this to me many months ago and then I lost it.  She was nice enough to find it again, scan it and email it to me. These sites are not just for children with special needs. Here it is for you to see and share: Tech Tool Kit Provides learning tools to enhance learning for all children. Book Builder Enables users to create, share, publish, and read digital books that engage young readers. Signed Stories provides books that readers can view in sign language and with subtitles. Books are also in audio, and users can easily share them with friends and family. Mother Goose Club   Furnishes nursery rhymes with child actors who animate the poems.  Carnegie Library for Kids   Allows for creating, sharing, and publishing digital books for repeated readings and includes wonderful prompts to help children begin. Natural Readers   Provides application software that reads any text on a computer. Word Talk - UK Provides a text-to-speech plu

A Message from Santa

If you have not seen this yet, check it out. It is a free personalized video message from Santa. This will be our third year receiving one from Santa: Ben's Message from the Portable North Pole Make your own message!

Clorox $50,000 Grant

Power a Bright Future Logan and Sean attend a local Montessori school. The school is in the running for a grant through Clorox. Please take a look at this and if you feel comfortable, vote for their school. To Vote: 1. Text 2439pbf to 95248   or 2. Vote online at Power a Bright Future You can vote once a day per device until December 19, 2012.  Vote from your phone by text, your work computer, your home computer and your ipad.  Just VOTE! Create an innovative TV studio where students collaborate Highland Mill Montessori, Charlotte, NC Program Detail: Bringing innovative technology and local artists together will help our students become 21st century learners by creating a state-of-the-art television studio. We will collaborate to implement Montessori Philosophy, Common Core, and Media/Technology curricula through planning, research, and using the technology skills needed to produce quality broadcasting, which will result in helping our students become lifelon

Gobble Gobble to You and Yours!

Happy Thanksgiving!

Trophy Envy

Clearly, Ben's brothers were more excited about the trophy than he was about it. But then again, they were more excited about the whole baseball thing too. Oh well!

Braced for Day and Night: Part I

The  shoes  Ben is wearing are especially for use with AFOs. Every six months, Ben is allowed to receive new braces (ankle foot orthotics), shoes and socks through insurance and Medicaid. If for some reason his foot should grow too quickly in that amount of time, we could ask for special permission. We have not had to do that yet; luckily six seems like the magic number. After being cast, it takes about 2-3 weeks for the braces to be made. We use Level 4, a company that makes its own braces. Our orthotist, Steve, is involved throughout the process, to ensure Ben gets the best fit. This time, before we went in for casting, Ben visited an orthopedic surgeon. I wanted a new set of eyes on Ben's pronated feet, which seemed even more pronounced lately. The surgeon suggested Botox, something he did not do, but our neurologist certainly would do. After the trip to the neurologist and a very definite "no" about her office injecting the Botox, we were sent to a p h

Say It Again, Baby!

We waited six months to receive Ben's NOVA Chat 10 . It arrived about three days before the burglary. It sat on the kitchen counter with one sheet of paper covering it. It looks like an ipad . That it did not catch the thieves' eyes, I can only believe it was Ben's guardian angels hard at work. This is the homepage for a helper to use first. Each button goes to a field of  two for Ben to make a choice. After many hours of setting up a simple platform we can use with Ben, we started using it just two days ago. We all expected that it may take a year or even more for Ben to get the concept. I believed that if we stuck with the process, he would eventually "get it". It took 30 seconds or less for Ben to "get it". Let me give you a few examples to illustrate what I am talking about. In each of the examples below, Ben was given a field of two choices. 1. Smoothie or Cottage Cheese, Ben chose Cottage Cheese. He ate it, three different meal times.

You ARE in Good Hands!

We are more than a week away from the break-in, and with information, a few more locks and the advantages of a surreal experience, all is settling down at our house. First, our insurance company, Allstate , has been generous with their coverage. At the time of the break-in, I had absolutely no idea about what would be covered. Unbeknownst to me, our insurance agent, whom we have been doing business with for over 15 years, had us covered for every possible scenario. Allstate has an express office to handle some claims over the phone and computer. Fortunately, our situation called for use of this service. Within 24 hours of turning in my list of stolen items, they had a settlement for us. We have 6 months to make changes, add items and dispute the claim. The police investigation appears ("appear" is the operative word here because no one is telling me anything) to be moving along. Since the burglary, we found out that two neighbors saw one of the perps (always wanted to use

B&E in Whoville

We were robbed yesterday. I came home at 1:30 pm and as I walked to the back door, I saw one of the French doors wide open. Let me stop there - for those who know our family, it is not unusual for a door to be wide open with no one at home. My first thought was that my husband came home for lunch and used that door for some reason. But then I saw the glass and got back in my car quickly. I have yelled out loud too many times in the movies as the ominous music plays in the background and the disposable character walks into the dark house with a blood trail leading up to it. I was not that fool. I drove to the front, called Ryan and then the police. At the same time, our new neighbor came out. After I told him what I saw, he said he had seen someone running from our yard at about noon. He had a fairly good description of him. When we finally entered the house, it was a shock for me to see our stuff thrown around. In some rooms, it was like what you see in a movie with dumped drawers

Person Centered Plans - Real Stories

Let me tell you first that this video is 21 minutes long. And it does not get all that interesting until 6 minutes into it. With that said, it is worth listening to, even if you listen while you do other work. The pictures in the presentation are not as important as the story. At the center of the story is a boy named Kenny who has several severe special needs. With the support of his parents, teachers and other people, he is able to find himself working at a chicken farm in NYC. The presenter goes on to tell stories about other people who have found their special place in this world. Thank you to Cousin Angela for sharing this with me.

Reading Between the Pixels

At my last trip to the public library, I found a DVD of children's stories being read aloud. A story we just read,  The Man Who Walked Between the Towers  was featured. Having been only four years old when Phillipe Petit made his daring walk between the Twin Towers, I was not familiar with the story. After reading the book, our whole family was intrigued by this stunt. I snatched up the DVD and surprised the kids with it. We ended up watching this particular  DVD  at least two times. There are three other stories after The Man Who Walked Between the Towers . There are several reasons why I liked this DVD. As the narrator read the story, the words were highlighted on the screen. The camera panned over the illustrated pictures throughout the book. There were no added caricatures or moving parts. The focus was on the words and pictures and not on added frills and thrills. At some point, I realized Ben was still hanging with us. Usually, our family movie nights are interrupted by

Last Fish Standing

Ben's Fish About two months ago, Sean sold his train table and used the money to purchase fish and equipment for a tank that was given to us. With some encouragement, he graciously let each family member choose something to add to the tank. All was going well until we got overzealous with cleaning the tank and altered the balance of good bacteria, causing the fish to get ich  (pronounced ick), a fish illness, caused by a change in the environment. Similar to Oscar Wilde's statement about art imitating life, this was clearly an example of the aquarium imitating life. Ben's fish, named John, was the sole survivor of our fish fiasco. Not unlike Ben, John handled the changes in the tank without stress or white spots. And if you are wondering if we flush our fish, we do not. We may be the first family with a fish cemetery. Each were buried in a pudding box with the site marked by a stone. Ryan oversaw these services and closed with a prayer. Sean chose a new fish to j

Happy Halloween!

The Pirate, Professor Charles Xavier and  Raphael of TMNT say Happy Halloween!

Celebrate the UPside of Down™ during National Down Syndrome Awareness Month

Ryan has had an impact on our family. He is the son of one of Ben's former teachers and has Down syndrome. Our families have become friends, doing things together and looking forward to one another's company. If I did not have their friendship, I would be in the dark about Down syndrome. When a petition about  National Down Syndrome Awareness Month  was brought to my attention last week, I did not hesitate to add it here. Please take a minute to look it over and see if it is something you want to support by digitally signing the petition. Feel free to share with others through email, Facebook or on your own blog. The people behind this are working hard to get the word out, and as we have all learned, social media is the way to do it. "Dr. Kinder is mother to 8 year old Ella, who has Down syndrome. For the past 8 years Dr. Kinder has been on a mission to change the way Down syndrome is viewed and how the medical community responds to it. Right now we have a

At the Heart of the Game

I probably have already featured the Miracle League one too many times for any reader's liking, but here I am doing it again. Remember at the end of "How the Grinch Stole Christmas" when the narrator says, " the Grinch's small heart grew three sizes..."   That is what it feels like at these games, my heart grows. It is hard to explain, unless you witness it yourself. There is an overwhelming feeling of love, gentleness and caring at these games. Call me hokey...but do so behind my back and after you have attended a few games and don't feel it yourself. This week, it started with an early call from a friend whose son is also on one of the teams. She was calling to say that the photographer was fabulous. The professional photographs for team and individual photos were scheduled for this day. At the field, I witnessed those moments that individually are important, but together, in a short one-hour time frame, they make my heart swell. They are...

Thumbs Up to Rugby

Watching Dad play in an alumni rugby match made Ben pretty darn happy. We were there for almost 2 hours, and I did not hear a peep from Ben...just lots of smiles.

Resources Galore

Recently, I was sent links to varied types of resources.  This lead me to do some more research. Here is what I found: Council for Children's Rights - Wednesday Series in Charlotte, NC An opportunity for parents, family members, and professionals who advocate for children to ask questions about special education and school discipline. Take On Sports - Weddington, NC Take on Sports (fka Challenger Sports) offers athletic opportunities for the special needs youth ages 5 through 22 (or graduation from high school), in Union County, NC.    Federation for Children with Special Needs The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. We are committed to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities. Article for Pare

Miracle League Raffle

One of the moms from Ben's baseball team is running a raffle to raise money for the Miracle League.  Please contact Wendy Batley directly at to work out the details for payment and prizes. Her son, incidentally, is the very talented announcer for the games when he is not playing for the Braves. Joe Gibbs Racing Pack

Halloween Costumes for Wheelchairs

2009 TMNT, Superman, Froggy 2010 The Karate Kid Year 2011 - The Star Wars Year The stress of coming up with costumes for Halloween stresses me out every year. As the kids get older they have more ideas and take more responsibility deciding who they want to be and how to get that certain look. Ben's costumes need to be simple -no masks, hats or anything he can take off and eat. Before I had a chance to even think about Ben's costume, Logan came up with an idea - Professor Xavier from the X Men. Professor X is in a wheelchair and is one of the most powerful superheroes in the X Men comic book and movie series. He wears a dark suit which is easy enough to find and very Ben friendly. Logan wants to shave Ben's head to finish off the look, but that's not happening! Many people have mentioned that there are sites for creative Halloween Costumes for wheelchairs - here is one:  Halloween Costumes If you have other sites, please send them to me. Or even bet

Ben Takes the Bronze

Ben played in our county's Special Olympics Bocce Ball Event yesterday. Lots of athletes, teachers and volunteers were in attendance. The highlight for Ben was having his brother, Logan there. Logan played hooky from school to see Ben participate. On the way home, Logan made a few observations about kids with special needs - "some are like zombies and some are just normal." He decided that Ben was medium. We also talked about what Logan's friends at school say about Ben. Logan could/would not give me details about their questions, but he said that he answers their questions and then tells them a little about Ben. I asked Logan if he would ever want to meet with other kids who have brothers and sisters with special needs. Incredulously, Logan said, "Why would I want to do that?" I told him about  programs where he could talk about any feelings he may have about having Ben as a brother. His response, "No Mom. I like Ben." I guess that answer

Take Me Out of the Ballgame...

No, I did not mistype the title of this post. The jury is not out anymore, I think Ben would rather be a spectator than a player in this sport. When he is in the dugout, he looks longingly at us sitting in the stands. When he is in the outfield, his complaints reach us from across the field. Just three more games and Ben can put in for retirement. Although, I am not giving up on Ben's athletic career. One friend whose 14 year old son, Ryan, plays baseball on another team is having the time of his life. He made a home run last week and it was all I heard about from Logan. However, there was a time when Ryan played soccer and was so disinterested in the sport. His mom thinks his age has something to do with the change in interest. This gives me hope! Perhaps maturity or a change in sport may help Ben's perspective. We will just have to wait and see.

The Allusive Diagnosis

A few months ago, I mentioned that a company called Gene DX was running a Comprehensive Epilepsy Panel on Ben. I was not hopeful that anything definite would come back, but the price was right and a little blood letting was not going to hurt Ben. The results were interesting, yet, not significant, nor remarkable, definitely not a diagnosis. Basically our letter told us that Ben tested "positive for a mutation on the MECP2 gene which is on the X chromosome. Mutations in this gene result in Rett's Syndrome in females and neurodevelopmental problems and epilepsy in males. However, his mutation is in a location that has not been previously associated with disease. Therefore, significance is unclear." When we meet with the neurologist, I will get a better idea if there are next steps to take - as in more tests. If they are more invasive or expensive, we will probably just drop it for now. Nothing will change about Ben's therapy and care. I have thought for a long

Putting the FUN in Funding

I remember when I applied for college, everyone talked about all those scholarships and grants available to pay for tuition, room and board. I never found them, but I am sure if internet was available way back then, I may have had a fighting chance. Here are more sites sent to me for funding communication devices, medical expenses, etc. Some have links to other sites. It will take time to read through guidelines and complete paperwork, but I truly believe that the hard work can pay off. I am currently working on an application to help us pay for Ben's medical insurance. A friend sent me the link and it seems that we may fit the criteria. It is a pain to get all the paperwork together, but if it saves us thousands of dollars, it will be worth it. Good luck and send us any suggestions and sites that you may know about: Different Iz Good - Organizations Gifting Apple Devices itaalk - 5 Steps to Getting an iPad Covered by Insurance: A mom's story of success itaalk - G

In the News

After car troubles, technical issues, phone problems (Ben ate my phone) and stomach aches...I am back. Here is a quick story in our local newspaper: Miracle League Article

Temporarily Toothless

As a parent and a person who prides herself in setting goals, I have looked forward to one of my boys looking oh so cute and adorable with a tooth or two missing. Both Ben and Logan have lost teeth, but the adult ones were already there waiting impatiently for their own place in the limelight. Finally Ben lost a tooth without another one already there. Goal accomplished! I can sleep easy now.

Charlotte’s Miracle League Baseball Field

What a difference one week can make. The baseball game was more fun for me, and I am hoping for Ben too. His buddy was a University of North Carolina at Charlotte Baseball Player and he seemed very comfortable with Ben. Ben used his wheelchair and we were able to curtail some of his shenanigans. While in the outfield, Ben spent most of the time trying to get at his Buddy's baseball cap. When Ben was going crazy grabbing at anything around him, I noticed his Buddy give him a quick shoulder rub which seemed to focus him. An OT might have called it deep compression . Whatever it was - it worked to get Ben to turn around and pay attention. During the week Logan commented that Ben's baseball game was not about winning, but about the players' talents. At 10pm, the night before the game, Sean came rushing into my room with an idea: He just heard a song with the words, "I'm a boy, I'm a boy, I'm proud to be me. I'm a girl, I'm a girl, I'm prou