Thursday, March 31, 2011

Oscar Anyone?

Last night we watched one of the most riveting movies we have seen in a long time. The characters were well developed, the story kept us engaged and the scenery made us feel like we were at home. Are you at the edge of your seat, waiting for a title you can add to your NetFlix queue? Or perhaps you cannot wait and have to run to Redbox for viewing tonight?

Ahhhh - I have tricked you a bit, although I speak the truth when I say we loved every minute of our home video. Yes, it was a home video from 2007 and 2008. I had all our Hi8 tapes turned into DVD movies so we could finally watch them. Our original camera broke a few years ago so we lost the ability to see them.

Recently, I heard from one of my readers that they had not thought about the benefits of videotaping their child, and I want to share with all of you that it is important to videotape your children, not just for the memories but as a way for your child with special needs to see themselves interacting within their environment.

You do not need any kind of expensive equipment - most digital cameras will allow you to take videos. Once taken, download to your computer and put on a DVD-R disk and then let the kids watch. If you get really creative, add music and then you have keepsakes for family members.

I find it best to take many short snippets of 1-2 minutes than long 5-10 minute views of the same activity. It is also easier to grab the camera once or twice a week and record for one minute than thinking you have to invest long periods of time into videotaping.

Most importantly, it is a great way to record memories and also see how far your child has come. Last night, Ryan and I were reminded how Ben used the commando crawl to get around, mostly using his arms to pull his weight across the floor. Now Ben uses his entire body, legs and arms, lifting his torso to move very quickly from room to room.

Other things I noticed was that Ben used to make consonant sounds and put his lips together more often. It makes me wonder why his speech skills changed. It helps me remember this information, and puts it in a time sequence with regard to his age and what is happening in our lives.

Another reason for videotaping - a great way to show therapists and teachers what your child is capable of doing. Often, I find people do not believe me when I say Ben can climb into a dining room chair or onto the sofa, but seeing is believing.

Ben thoroughly enjoys watching himself, his brothers and cousins on video. He laughs and smiles when appropriate and he sits for an entire hour on the sofa with me without moving a muscle, something he does not even do for Bob the Builder.

I think we will have an encore tonight.

Wednesday, March 30, 2011

Special Exposure Wednesday: That Smile

See if you can follow this branch of the family tree: 
Ben's paternal great-grandmother's niece sent me this last week in the mail. 

Made my day!

Special Exposure Wednesday and Wordless Wednesday are featured on sites to promote photography. Join in the fun. Or if you need your photos to be accompanied by lots of words try Wordful Wednesday
at Seven Clown Circus.

Tuesday, March 29, 2011

Wired Again

In January, Ben had a video EEG at the hospital. In a nutshell, Ben was hooked up to 20 wires for 24 hours in a hospital room with little to no nursing assistance. So when we had the "opportunity" to get more information about Ben's seizures, I figured we would try the Ambulatory EEG. New experiences are good, right? Plus, torture at home has got to be better than torture in the hospital.

All 20 electrodes took about one hour to apply.
If you have not done an Ambulatory EEG, I hope this will help. Here are photos of the process and some things we did to make the experience tolerable for all of us.

1. Bring help to the doctor's office. Gluing the wires to Ben's head was difficult again - he knew what he was fighting for this time! I also needed the help for the car ride home - Ben could have done a lot of damage to the wires while I drove home.

Ben was held down by three of us.

2. Keep your regular routine. Once home, we planned activities for Ben to do so the information on the EEG may be more indicative of Ben's lifestyle. We took him to the YMCA in his walker, then to Smelly Cat for a milkshake and then home for relaxing. The activity also helped get his mind off of tearing those wires off his head.

3. Take shifts. Ryan took the early night shift while I slept. Ben fell asleep on the sofa, and I relieved Ryan at 1am. Although I could sleep a bit, Ben tossed and turned so much I kept worrying that he was tearing the wires. He did manage to break 2-3 wires by the end of the 16 hour monitoring.

Ben had his usual at Smelly Cat, the local coffeehouse.
4. Ask for help with glue removal. At the video EEG, no one offered any suggestions on how to get that darn glue out of Ben's hair. Another mom blogger finally gave me some tips after she called their local Epilepsy Center. This time, the technician used a special solvent while at the office and Ben came home glue-free. I was glad, because I was not looking forward to a repeat performance of the the peanut butter concoction my husband used last time to get the glue out.

I preferred the EEG at home. It was done on the weekend, so any sleep lost could be made up the next day without the mad rush of school and regular routine weighing down on me. And Ben did have several "events"  - he fell forward a dozen or more times and his eyes fluttered a few times too. So hopefully, he gave the doctor the information she needs to offer options about Ben's care. We meet with the neurologist in May and will get the full report then.

Sunday, March 27, 2011

Magic Marker Monday: Worm On A Leaf

One googly eye, marker, scissors and green construction paper and
you too can have a worm on a leaf at your house.

Need some art inspiration for your household? 
And if you have a little artist in your home, link up and share with others.

Saturday, March 26, 2011

Almost Missed the Mark!

Today is Purple Day - an international grassroots effort to promote Epilepsy Awareness. Luckily, I just saw it on's site while on a very romantic date with my husband. We are at his college's computer lab. He's studying and you can guess what I am doing.

We unintentionally "celebrated" with an EEG today. More on that later this week.

Wear your favorite purple PJs to bed in support of becoming more aware of this disease.

More Ways to Get eSpecially Ben

Thursday, March 24, 2011

The Lost Photo

Nine months ago, Ben had a brush with fame and we had nothing but our story to prove it. Now the photo has surfaced.

Here's Ben with Ace & TJ from the Ace & TJ Radio Show. Their work with Grin Kids is admirable - check it out when you have a moment.

Tuesday, March 22, 2011

Special Exposure Wednesday: Keeping up with Bieber

EXCLUSIVE from TMZ*: Ben cuts his hair.

Unfortunately we forgot to save the trimmings to dole out to charities

Special Exposure Wednesday and Wordless Wednesday are featured on sites to promote photography. Join in the fun. Or if you need your photos to be accompanied by lots of words try Wordful Wednesday at Seven Clown Circus.

* The Mother Zone

Part II: Answers to Questions Pondered

Today, a neighbor jogged by our house. I stopped him briefly to see if he had received the candy thank you I left for he and his wife in their mailbox. He had seen them and eaten his M&M's in his goody bag, and since his wife was out of town, he had put them aside for her. I jokingly said that I was impressed that he had not eaten them himself. He shared with me that he thought of doing just that, but in the spirit of the contest, he thought it was best to save it for her.

Those words "in the spirit of this contest" lead me to those questions I challenged you to ponder.

Was it worth it? Was this the best method to gain a larger audience for my site? Other sites? Absolutely. My daily hits are sometimes as much as what my weekly hits were before the contest. eSpecially Ben's subscriptions have almost tripled reaching a more diverse audience. (More than my mom is reading now.)

Would I do it again? No - I think different blog sites should be tortured featured every year.

Was awareness raised to new groups of people?  Or were we preaching to the choir?
eSpecially Ben's strategic initiatives to gain more votes gave family members and friends a legitimate reason to ask their extended families and friends to read this blog. People who did not even know we had a son with special needs were suddenly reading about our life and experiences, voting and then passing the information on to their family and friends. It was a non-stop cycle of sharing. People I barely knew would forward me emails they had received from some distant relative or friend about how eSpecially Ben had affected their outlook on life.
What was's purpose? I think Terri Mauro did a good job in her response to my question. However, I would add that the purpose is also to get more hits on the site which turns into more revenue for them through advertisers. Are you really surprised that this was about money?

How many ways can people suggest to cheat the voting system? 
This could be a funny question if it were not true. Too many people emailed me with ways to cheat by clearing histories, using cell phones and just waiting a few minutes to vote again. There were others who contacted me absolutely sure that the other camp was cheating - they had watched the voting through the night and were sure of it.

I had other computer gurus asking if I wanted a virus put out on the other blog. I told them I would wait on that.

What about a trophy? Bragging rights are cool and all, but a gift certificate for dinner or something small would be nice. After all the work we put into it, a celebratory dinner on's dime would have been sweet.

Healthy Competition? I am competitive. And I cannot believe how many other people are just like me. Our children's Sunday School teacher was up way past his bedtime checking results, charting statistics and recruiting others to vote. Our weekly message about what Bible story to read always included a note about voting for Ben. My trainer at the gym came in one day so worked up over a dream she had about Ben the night before that she was determined for eSpecially Ben to win.

The other blog that was neck and neck with us for about a week or so decided to call it quits the day before the contest was over. Although the site was still in the running, they decided to stop campaigning. There could be a million reasons for them to make that decision, but I worry that the competition got to be too much. Here we are two mothers, both with three boys, just trying to write about how we get through every day raising children with differing needs. On any other day, we would be commenting on each other's sites, asking for advice and laughing over shared experiences. Instead, we became competitors, making it an us vs. them mentality. I am still not sure how I feel about it.

On one of the last days of the contest while handing out fliers, I met Ben's classmate's mom. I have known Niat for three years and in those years, she has learned to walk and say a few words. She is always happy sporting a big smile on her face. She and Ben usually sit across from one another at lunch. If not for this contest I may not have had the chance to tell Niat's mom that I was so proud of all that her daughter had accomplished. (Niat is the little girl in the literacy video with Ben.)

Now, if you read this and the only thing you took out of it was, "Where is my thank you candy bag?" let me know and we'll see what I can do for you. Cheers!

Sunday, March 20, 2011

Magic Marker Monday: Break Out the Chalk

On Friday, we visited Sean's preschool to celebrate his 3rd birthday. 
Logan drew this in the courtyard and called it, "Sean at his school."

Need some art inspiration for your household? 
And if you have a little artist in your home, link up and share with others.

Thursday, March 17, 2011

Part I: Answers to Questions Pondered

These are comments that I received from Facebook, email and eSpecially Ben to the post, Life After Awards. Thank you for weighing in on this discussion and having the courage to say what is on your mind.

I will add my thoughts next week. Feel free to post your comments below.

The contest, “was it worth it?” Of course it was worth it.  So many things separate us, but this helped us find the ties that bind.  For a couple of weeks, it brought people from all over the country together for a purpose.  Sand spread out on the beach is sand, but with a common interest we made a castle.  

Was it worth it? A resounding YES.  Should you do it again? YES.  What about the other families, cheating, motives, trophies?  Its clear to me that everyone wins this contest, there are no losers, just bragging rights.  So life can go on, as it will and if some peopled learned more about special children, then the contest accomplished its goal.  

These are good questions, Vanessa, and I'm glad you're asking them. This was my first time hosting the Readers' Choice Awards on my site, part of a larger contest across a number of sites that's been going on for a few years. I had hoped it would be a fun way to get some attention for some great special-needs resources. And certainly, as you have hoped to get more readers for your site, I have hoped to get more readers and traffic for mine. In addition to being an guide, I'm the parent of two children with special needs, and my work on the site helps support my family. I work hard on my content and want to get it in front of as many eyeballs as possible. So I'd hoped this would be good for all of us.

I did not at all expect the level of interest and competitiveness this would draw, especially since, as your son so appropriately points out, there is no trophy. All four of the categories have close two-way races with thousands of votes cast. At this point, it seems impossible that four finalists and their followers won't be severely disappointed and feel that they've wasted their time, and I feel terrible about that. I'm doing what I can to bring attention to all the finalists; I'd like everybody to feel that they've been a winner in some way. But I've got a lot to think about, too, in terms of how I want to conduct this thing if I participate next year. I hope, in the end, after the frenzy dies down, that this will have been a good experience for you.

I'd like to remind your readers that, after the voting ends tonight, it will still be possible to support eSpecially Ben by leaving comments about why you love the blog at There are some very nice comments there already, and they'll stay up long after the contest is over. 

--Terri Mauro

Well said. I love learning about the mentor books, childrens' books and other blogs. At the end of the day we are all in a battle and if one of us wins then all of us win!!! 
--Territory Mom

Here's my take on it: a) there's nothing wrong with being competitive and wanting to win (even if there's no actual prize.) It's nice to be the people's choice and b) You got the word out about Ben and others with special needs to a lot of ...people who might never have encountered your blog otherwise. Your entries are inspiring and insightful and the more people who know about it the better.

Thank you for giving these questions some thought.

Wednesday, March 16, 2011

Special Exposure Wednesday: St. Patty's Day Memory

Logan, 2 and Ben, 4

Three years ago on St. Patty's Day, I took this photo of Logan and Ben sitting on a bench in our yard. I distinctly remember this moment because three days later, Sean was born, forever changing their world.

Tuesday, March 15, 2011

Thank You from Kid Charisma

Better sit down for this one, it's going to be a long one.

My friend, mentor and former colleague, Roger McGrath, passed away in December. We coordinated a freshman leadership program as well as taught a class together at our local private university. Roger brought a wealth of experience to his teaching from a full military career. He also made it his point to read everything. If you brought up a topic, he knew something about it and would quickly lead you into an argument about the issues, always taking your opposing view. As one person so eloquently said at his memorial service, "Roger would argue with you even if he was violently in agreement with you."

Besides teaching the importance of looking at all sides of an issue, Roger instilled in every person he met, the idea that leadership involves a collaborative effort. His favorite quote was from Lao Tzu, a Chinese Taoist philosopher, who said that when the goal is reached, the people will say they have done it themselves.

This campaign to gain the Readers' Choice Award for Favorite Special Needs Parenting Blog was the goal. The people who made it happen were many. By the last few days of the contest, I could not go anywhere without people talking about it and how we were going to win. I received emails, phone calls and Facebook messages about how we were gaining votes, percentages and spreading the word. At no time did I feel like I was by myself in this effort. I may have started the ball rolling, but every person picked it up and handed it off to someone else. And this became the way we promoted the site, by continually spreading the word.

And Ben was our leader and inspiration. In this house, we call him "Kid Charisma." Ben's charm is powered by his determination, stubbornness, sneakiness, willingness to keep going, never give-up attitude and down-right funny personality. Without talking or walking, Ben manages to convey what he wants and needs, who he likes, how much love he wants from you at that exact moment to how much he does not want at that moment. He can trick you into anything, and then it is too late to realize it. His laughter, smiles and hugs lets you know that he knows he is loved and that he is happy in this life.

There were too many reasons for people to rally behind Ben.

So here I go, I will try to thank everyone who made this award possible. There is no way I can name everyone because there were endless amounts of people supporting us. If I have forgotten you, please forgive me.

The Family Connection
Ryan was my biggest supporter. He took this and ran with it to all his work colleagues and friends. He made phone calls and sent messages on Facebook. He was with me at 1am when we could not sleep because of all the excitement. He was the person that made this fun. We were definitely in it together.

My mom surprised me as well. She was the creative genius behind some of the ideas we used. I am still glad she did not stand up on the bar of the restaurant to make an announcement about the contest, though. There is something known as going too far, Mom ;)

My Dad is the go-getter in our family. Since birth, he has taught me to find my resources and use them. We held daily strategy calls discussing who next we would contact. I floundered a few times, but he pushed me to make the call. At times, he thought we were all a little crazy, but he still went with it.

Kevin, my step-father, showed his true colors on this one. He has been an unwavering fan of eSpecially Ben from the very beginning, being my second email subscriber. The first being my mom. His devotion to Ben and winning this contest helped spread the word to bicycle enthusiasts across Long Island. His obsession with the contest makes me glad he was on our side.

Francesca, my step-mom, brought the words of eSpecially Ben to all her co-workers at a large company in New York. Her daily reminders to friends and co-workers helped get them to vote and also read eSpecially Ben.

My father-in-law, Jerry gave me the idea to send out a popular blog post with any reminders. This proved to be an effective way to get people's attention who had not had the opportunity to read anything from eSpecially Ben.

Then there is the A-Team: These are the people that stepped up and went crazy getting votes. Every one of them surprised me with their enthusiasm and down right tenacity. Sylvia sent out a Rockyesque message to our core group of people. Mr. Terry had the youth of the church urging their parents to vote and Carolyn was driven by dreams about Ben.
Mr. Terry, Ben's Sunday School Teacher
Sylvia, Ben's case manager
Tim, our next door neighbor and expert Tweeter
Carolyn, our YMCA connection
Joan, Ben's grandpa Kevin's sister

CORE Group

Every day, I sent out an email to 24 people who wanted a reminder to vote. They, in turn, sent the email to more people. I think it had a snowball effect because we started reaching all kinds of audiences. In fact, people were finding out about the contest from two different sources with Ben being the only connection.

Charlotte Homefront
We live in a vibrant city, full of wonderful and caring professional people. We have been fortunate to have the resources for Ben to receive amazing services from these organizations.When we put out the call for support, it was answered with enthusiasm.
Ben's current school
Ben's school for next year
Ben's bus drivers
First Steps Pediatric Therapy
Early Bird Therapy
North Carolina Assistive Technology
Therapeutic Recreation Staff
ARC of North Carolina
Easter Seals/ UCP
Charlotte Public Library

NoDa Families - we live in a small neighborhood in Charlotte. All who live here are thankful for the supportive community of neighbors, parents and kids. Whether it was at school picking up kids, hanging out at the park or at the local YMCA, everyone was concerned about the numbers and percentages. Knowing the people with whom we live with care enough to take part in this contest means a lot to our family.

Facebook Family 
My Facebook friends who represent people from my birth through the present were a strong force in this race.  I know many did not sign on as my friend or family member to be bombarded with messages about voting, posting, changing their status, telling friends...but most of you acquiesced and helped the cause. We all appreciate it. Someone said it best with, "We knew you were not going away so we just joined in."

eSpecially Ben now has its own page. If ever there is a need to call on for help, this is where I will go for it. I think I have managed to keep most of my family and friends this time, but would not expect to if I were to run a campaign again using my personal Facebook page. If interested, please join eSpecially Ben on Facebook.

Charlotte Businesses  
These businesses hung flyers for their customers to see, some put it on their Facebook pages while others sent out emails. Thank you for the support!

Plaid Penguin - designed the new eSpecially Ben header and logo
Boudreaux's and The Sanctuary

She Luv A
NoDa's Dry Cleaners
NoDa's Deli and Market
Smelly Cat Coffeehouse
Charlotte Fire Department
Discovery Place Science Museum
CVS Pharmacy
Fuel Pizza Cafe on Central
Domino's Pizza
Eastover Pediatrics
Laurel Wealth Advisors
Carolina Pad
Queen City Lumber

OnLine Communities
These groups let their communities know about the contest and, in some cases, added a personal note about why they supported eSpecially Ben. Through these connections we reached many people.
The SITS Girls
5 Minutes for Special Needs
Territory Mom Blog
Blueberry Eyes Blog
Life and Oh La Dee Dah
Charlotte Observer Moms
Pay It Forward
CLT Blog
University of Maryland CSP Alumni
And finally, a thank you to Terri Mauro with She has been behind the scenes reading all the finalists' posts, writing articles to promote each site and hoping to gain more exposure for every site, eventually raising awareness about children with special needs.

With all this said, what will change now that eSpecially Ben has an award under its belt? Big virtual parties, flashy site, expensive widgets? Although, that sounds like fun, I think we will keep going with what we've got, add some zing and bling when we can and hope people continue to follow us on this wild and crazy journey. Thank you all.

Monday, March 14, 2011

Magic Marker Monday: Frog Fever

Ben came home with this on Valentine's Day. With a bit of creativity, this cute frog may be developed into any springtime craft.

See more works of art at

Sunday, March 13, 2011

And We Finish 11th!

I write this from bed, feet propped up with plans of a nap in my near future. In fact the nap was so near in the future, I finished this Sunday night.

My eSpecially Ben teammate, Ryan, is watching ACC basketball on the sofa, nursing sore muscles and joints. After running through the streets of downtown Charlotte, we are wiped out. A day later, we are still recovering.

Clearly, this is a "before the race starts" photo. This is us looking fierce.
As we left the house and made our way to the starting point, our energy and enthusiasm was high. We had read about Charlotte history the night before and felt relatively comfortable answering trivia questions.

When we got there, we were happy to see 13 teams assembled. Many teams came wearing costumes and Ryan and I regretted not wearing our eSpecially Ben t-shirts with capes.

80's Girls
Caped crusaders

TR Pixies
Guys Just Trying to be Girls

Not sure what they were going for...

The race started with a pencil and paper Charlotte trivia test - with each correct answer shaving off one minute from our overall finish time.

At 9:15am, we were given a clipboard with our first set of clues. With a backpack full of snacks, water, cell phone, camera and extra camera batteries, we left to find the first clue - a school with a mosaic design of a band. Found it quickly and took the photo. Check.

Then we had to find the year a specific church was built. Found the cement block built into the structure. Check.

Next clue talked about a quote by the person who created the telephone, mentioned AT&T, and lots of other words I cannot remember now. Ryan and I were stumped by this one for several minutes. Then an epiphany came to us and we walked all the way to the Main Library - clear across the city. The Main Library has 20-30 quotes by famous people hanging on its columns, but none from the great Mr. Bell. We were wrong. Very wrong.

This mistake cost us a lot of time and energy. After many discussions with security guards and workmen on the street, we found the answer - a statue of Alex in front of a new AT&T building, standing next to a man pulling cable wire. (If you need to know where the old AT&T building is, we can show you.) By the time we finished this set of 4 clues and made it to the first checkpoint, we were 15 minutes behind the last team.

But we kept going.

If you have watched Amazing Race on television, you know the teams do argue. The stress of the competition tests their relationship. Our experience was no exception.

At some point, Ryan's attitude went downhill and I may have been a bit bossy. We did end up on opposite sides of the street. We got back on track at the next checkpoint when we moved to #12 and they took a team photo of us. Ryan got to stick his tongue out at me and that seemed to break up the tension.

We started gaining time by running and answering clues out of order. Then another group made a mistake and that landed us in the 11th place.

I thought I was so clever when I saw this random Avatar under a tree.  It turned out not to be a clue, just a random Avatar under a tree.
 After 21 clues, three hours of running and walking, learning a lot about Charlotte art and history, we made it to the end. We had celebratory bagels at a local shop and went home.

I think we will be more prepared for next year. I've already put together a training program. I am kidding, perhaps.

Friday, March 11, 2011

eSpecially Ben Team in Amazing Race


With a backpack full of snacks, water, cell phone and maps, Ryan and I will end this whirlwind of a week by competing in our local Amazing Race tomorrow. We enter this competition with little information and preparation. My grandiose plan of t-shirts, capes and marathon study sessions ended with a broken dishwasher and residual exhaustion from the Awards.

From what we know about the race, we start by answering trivia questions about Charlotte. If answered correctly, we get to take off minutes from our final time. At 9:15am, we take off in search of clues of specific locations in Charlotte, take a photo and then find check-in stations to turn in our pictures. Sounds easy right?

Ryan cannot wait to get this over and I am curious to how it will all work. This could be a great marriage team builder or we could end up walking on opposite sides of the street. Ryan is a great puzzle solver and I know the city fairly well, but that does not mean we may have heated discussions about the answer to the riddle or  argue over which way to walk. Our goal of taking the "Chartered Fishing Boat Grand Prize" has been downgraded to the hope we are still talking to each other at the end and making it home safely.

It is not too late to donate to our team, you may contact Margot Howell at All proceeds will be used for the 2011 Summer Camp Scholarship Fund for Mecklenburg County Parks and Recreation's Therapeutic Recreation Department. To date, we have raised $230.

Wish us luck!

Thursday, March 10, 2011

The King's Speech

Although this little King has not won an Award just yet, he is still a winner in our house. On Monday, Ben's speech therapist, Kenyatt, came in from after his session with Ben to tell us a few things:

1. Ben is making the "H" sound 3 out of 4 times.
2. Ben made the "M" sound one time.
3. Ben understands that he has to do certain things to make these sounds. He gets the concept.

You can jump for joy now.

Kenyatt has been using Prompt Therapy with Ben for awhile now. From what I understand of the program, Kenyatt touches Ben's face in specific places for certain sounds to be made. It cues (or prompts) Ben to make the sound. My mom and I have tried to get Ben to make the "H" sound using Kenyatt's technique on several occasions and it has worked.

What does this mean? For me, it means that Ben understands communication. Kenyatt will continue with the therapy and try to increase sounds and shape them into words. The first word he will try is "me."

It also means - never stop trying, don't give up on your child, don't make assumptions about what your child can do or not do and ALWAYS fight for the best therapists. The therapist's passion for teaching and learning new programs combined for their love for your child can become a powerful combination. Kenyatt clearly brings all of it to the table.

Tuesday, March 8, 2011

Life After Awards

I am writing this before these awards are over. Some of you do not realize that this contest has been going on since February 11. Many people did not come into the game until a week ago when the race became frantic. Three and a half weeks of emails, Facebook messages, Tweets and every other gimmick known to the technical and non-technical world of promotion has been used, reused and then regurgitated once more. If I have friends and family left after this, I will be surprised.

In a moment of lucidity, I thought about Hartley's Life with 3 Boys and the other blogs trying to do the same things I pride myself in - spreading the word about children with special needs, trying to connect with others and enlighten others about our situation. Something about this race seems contrary to that purpose.

Then, my competitive streak takes over, and I am at it again.

Some family members have asked what will I do after this is over. Not to worry, something else will take its place. I think Ben's epilepsy issues are about to take on a life of their own. I foresee another hospital visit in our future. Amazing Race, yet another competitive challenge, is this Saturday - must study my city's history, design costumes, test Ryan on his knowledge, convince Ryan to wear a cape and stretch! And then it looks like I may be facilitating more leadership and team building activities for local groups in the near future. So what I am saying is - life will go on.

But I do have a lot of questions to ponder. 

Please mull them over with me.

I would love to hear others' thoughts on this subject:

Was it worth it?

Would I do it again?

Was this the best method to gain a larger audience for my site? Other sites?

Was this a healthy competition?

Was awareness raised to new groups of people?  Or were we preaching to the choir?

What are's reasons for sponsoring the award contest?

How many ways can people suggest to cheat the voting system?

Finally, why isn't there a trophy (that's from my 5 year old son)?

I will be posting my thoughts as well as comments from others later this week.

Monday, March 7, 2011

Magic Marker Monday: Tape it from me

Ben's class has done several of these painting in class. 
Put the tape down first, paint, let it dry and then voila, your masterpiece is complete.

Sunday, March 6, 2011

Inspiration from this Awesome 7 Year Old!

Turn up your volume.

Suck It Out of Your Ear

Logan has had these strange bumps on the side of his face, just below the ear lobe. They felt like pebbles under the surface of his skin. They seemed to develop after he fell a few years ago. Because of the pain they caused Logan whenever we touch that area, we finally took him to a plastic surgeon for a consultation. We learned that they were most likely not scar tissue from the fall. It was in fact something else, fairly common, but  needed to be removed and sent to pathology. The doctor assured us that it would be benign.

At the appointment, Logan asked how they would remove the bumps. The doctor went into a fairly detailed explanation that included the words knife and cutting. Logan freaked out. And Logan does freak-out really well. I quickly gave the doctor the evil eye and told Logan they would suck it out of his ear. He stopped crying immediately, I think he was trying to imagine how that would work. Then the doctor gave me the evil eye.

I was later admonished for my white lie, but my thinking was the kid will be asleep, why make him think about his face being cut open. I later had to go back and tell Logan the truth. It did not go so well.

That all happened in December. The procedure was set for last week. We had not discussed it since that day. After talking to other parents, my parents and the doctor's office, we decided to tell Logan the night before he was going to the hospital. We even toyed with the idea of letting the doctor tell him as the gas mask went over his face.

Ryan and I were ready for drama, complete with crying, screaming, yelling and a chase around the house. This is how it went:

Ryan: Logan, remember I am taking you to the doctors tomorrow to get that bump on your chin taken out.
Logan: No response

I observed this interaction and I was convinced that Logan could not have possibly heard Ryan's remark. So I nudged Ryan to repeat himself. He did.

Logan: Okay.

Later that night, right before bedtime, Logan told Ben, "I am going to have stitches just like you." Once again Ben comes to the rescue in his big brother role, someone to be envied and copied.

Keep Voting - 2 more days to go! Thank you.

Friday, March 4, 2011


Here's another memory forever stuck in my brain - Tony Randall playing Felix in the show, The Odd Couple, when he is in court and, of course, acting as his own lawyer in some small traffic case. In his moment of triumph when the defendant uses the word, "assume", Felix breaks down the word for the court, "When you use the word assume, you make an ass out of you and me." Picture lots of swagger and finger pointing.

Okay, where am I going with this? Somewhere, I hope.

I assumed when we ordered the Rifton Toileting System for Ben that our insurance would cover it. I never gave it a second thought after all the paperwork was turned into the salesperson that this would come back with a denial. I was counting the weeks before Ben would have his brand new toilet. And instead, I received a letter of denial.

This contest has taken on a life of its own. The fight to be THE favorite has turned me into an emailing and messaging machine. I have even toyed with the idea of trying out Twitter. Putting that aside, the number of people reached through this contest who would not normally come in contact with blog sites like these is remarkable. People unfamiliar with our stories are becoming educated on the struggles families and individuals face every day.

My hope is that through visibility and awareness, the people making decisions about special equipment will become empathetic and compassionate to our stories. They will think twice before writing a policy that says toileting and bathing systems are a luxury and not medically necessary. They will have an understanding that people with special needs deserve the dignity, safety and assistance that certain equipment provides. Instead of basing decisions on only numbers and costs, the person's quality of life will be taken into consideration. They will not assume.

After all, we know where assumptions lead.

5 Days to Go!

Thursday, March 3, 2011

Video EEG Update

I never gave much of an update about what results came from the Video EEG Ben had in January mostly because I will not have all the information until we meet with the neurologist next week. The doctor's initial note to us said Ben had 52 rhythmic bursts during the 24 hour period that we were at the hospital. I have Googled rhythmic bursts and none of it made a lot of sense to me, so I am fine to wait.  Often reading information on the internet leaves me feeling more scared and confused than more informed.

Most disconcerting is that the seizures which I describe as the "falling forward seizures" are back again. I can see Ben's energy level and bladder control decreasing. He's already bumped his eye and head several times this week. These are the same things that happened last fall when he started these seizures. It really sucks - I thought we were in the clear.

I am unsure what the doctor will do when we see her. Change medication? Call for another EEG? After the hospital visit last time, I may be okay trying the at-home EEG. At least I can sleep in my own house and Ben can move around.

And did I mention Logan had minor out-patient surgery on his face yesterday?

Never a dull moment here.

5 More Days to Vote!

Wednesday, March 2, 2011

Special Exposure Wednesday: To the Cloud!

Seen that commercial about the mom trying to get a decent photo of the family?

Vote every day, once a day through March 8, 2011.

Tuesday, March 1, 2011

Book Review: My Brother, Owen

In 1992, when Nicholas Keenan was nine years old, he wrote a book about his brother, Owen, who is, “physically and intellectually disabled.” By using photos of the two brothers in typical situations, the book has a realism with which children can relate easily. A simple message is clear – this is my brother, this is what his day looks like, this is how I interact with him and I am glad he is a part of our family.

This book could be used in a few ways:

  1. Home  Read it with your children to get a discussion going about special needs and disabilities – whether you have a child with a disability in your family or not. Starting a dialogue within your family is one way to handle uncomfortable situations and inappropriate language. It gives parents the opportunity to hear how their children feel about interacting with children with differences.

    Although the book does not address difficult feelings or topics, it alludes to Owen needing a lift to get in and out of his bed, a wheelchair to get around and the brother helping out with feeding Owen. More thoughtful questions may be asked using the book as a starting point.

  1. School  If appropriate, it may be helpful for teachers to read this book in class. Ben attends a different school than Logan, but I can see if they were at the same school, Logan would get a lot of questions about Ben. I am not sure how he would handle these questions on a regular basis.

  1. Community  I have had several friends with children ask me how to talk to their children about Ben. Ben is very popular in our neighborhood. The little girls on the corner get excited watching out for his bus, other kids just want to say hello to him. 

    After a difficult situation with a parent who compared Ben to a character in the classic novel, Of Mice and Men, I gave this book to him to read to his children in hopes that he would find another way to educate his children about people with special needs.

This book is just another means to help children understand the world around them. When our children are toilet training, we read them books about the potty. When our children are entering Kindergarten, we read books about starting school.  This is yet another way to introduce them to something they will experience and give them the tools to handle it with less fear, hurt feelings and misunderstandings.

Book Information
Photographs by Ian Robertson
Copyright 1992