eSpecially Ben

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 environ...

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 .

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...

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?  Check out 5 Minutes for Special Needs every Monday .  And if you have a little artist in your home, link up and share with others.

Today is Purple Day  - an international grassroots effort to promote Epilepsy Awareness. Luckily, I just saw it on About.com'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.

Join eSpecially Ben on Facebook!

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.

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 . * T he M other Z one

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 About.com 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 tortur...

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?  Check out 5 Minutes for Special Needs every Monday .  And if you have a little artist in your home, link up and share with others.

These are comments that I received from Facebook, email and eSpecially Ben to the post, Life After About.com 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.   --Kevin 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 accomplishe...

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.

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 the...

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 www.5minutesforspecialneeds.com

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 st...

  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 About.com 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 discus...

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 ...

Check out other special photos here.

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 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.

Turn up your volume. In case the video does not work, use this link: eSpecially Ben Video

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 wh...

  Logan, dressed as Spiderman, says, "Vote for my bruv-ver."

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 About.com 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 w...

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...

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.

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: 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...