Tuesday, November 30, 2010

Bumps, Bruises & a Stitch Here and There

Ben has had a rough couple of weeks between his finger getting caught on something at school causing much commotion in his classroom, a fall at his PT therapy session leading to a black eye, scratches on his head and chin from some other mishaps and ending this past Friday with a trip to the ER in NY when Ben fell off the sofa at his grandpa's house and cut open his already beat up chin.

I may have mentioned before that I do not like blood. I need to clarify - I steer clear of the red stuff when it is outside the body. At a neighborhood Halloween party, I heard crying. I ran to see if it was Sean, my youngest. I was correct, it was his cries I heard. As soon as I saw the blood all over my son's mouth, I took an about-face and headed for another room in the house, letting my husband assess the damage. Luckily, Ryan is the only one who saw me avoid my screaming bleeding child.

When Ben got hurt in NY, I was still in bed. Ryan called up to me for help. I assumed it was a bathroom issue that needed my expert assistance. As soon as I got to the bottom of the stairs and saw the blood, my brain turned to mush. Ryan is the resident crisis handler. He knows that I am not the person you want around when blood is present and decisions need to be made. At the sight of Ben, I immediately averted my eyes. If I saw the cut, I knew I would faint. Ryan issued orders for me to get things together for a trip to the hospital.  

Since Ryan and I have been together, he has teased me mercilessly about a scar I have on my right wrist. It is a half-inch cut with the imprint of the 3 stitches used to hold the skin together. For years, he would repeatedly ask me what had happened. Every time, I would tell him about the mole I had removed when I was a kid. My mother took me to our family physician to get a "dangerous-looking" mole removed. The memory is so clear in my mind - I can still feel the blood dripping down my wrist and seeing my mom sitting with her head between her knees so she would not faint. Each time I have had to tell Ryan the story, I work to convince myself that, way back when, it was normal to have the family doctor cut out your mole, sew it up,  and leave a very large scar for a very small mole.

Ryan leaves for the ER and his only knowledge of the health system on Long Island is of my wrist and that family physician. In comes Egor, the physician's assistant. Later Ryan describes him in full detail to me - tall, thin with high shadowed cheek bones, with the accent you would expect from a man with a name like Egor. And Egor's first words are, with all the inflections you would expect from a character right out of a vintage thriller movie, "I am here to take care of your son."

This reminds me of a vacation we took to San Francisco in 2002. Coincidently, my stepbrother and his wife had their first child while we were there. We went to the hospital to show our support. As we visited with the new parents, a medical professional walked in and with heavily accented English said, "I am here to take the blood of your baby." You can see how this memory pops into my head.

Why Ryan does not run fast from Egor, I do not know, because Ryan tells me, after the fact, that he was seriously concerned for the safety and welfare of Ben. Let me stop there - I do know why Ryan did not run from Egor, a train leaving for NYC was only hours away. Our brother-in-law had tickets to a basketball game at Madison Square Garden and Ryan was not missing it for anything.

Ben came home with 4 stitches that, in my non-medical opinion, are messy, spread way too far apart and look like they were done on the fly by Rambo.

As for Ryan, he made it home just in time for our brother-in-law to pick him up for the game. Steve's words at the door were, "Ryan, I am Calgon, here to take you away." And away they went...

Sunday, November 28, 2010

Magic Marker Monday: Creepy Crawly Pets



At a local nature museum, arachnid enthusiasts displayed their pet tarantulas for a special Halloween event. Then, an arts and crafts project was made available to the children. Logan, age 5, jumped at the opportunity to make one of his own, because that's the only way he is bringing one into our home.

Check out more works of art.

Saturday, November 27, 2010

Good Reason to Grow a Goatee

I have been giving regular updates about my friend's son, Ethan. This article is about a creative fund raiser a high school principal coordinated:  Come Together to Help Local Child

Thursday, November 25, 2010

Quietly Thankful


At many Thanksgiving Dinner tables, family members are asked to go around the table expressing their thanks for something special in their life. The usual remarks include God, health, children, spouses, parents and world peace.

Even if this tradition does not take place today, it is the time of year that most give pause to the blessings in their life.

I am thankful for my wonderful and supportive family, neighbors and friends. My husband could not be more supportive and loving. I have three beautiful boys who care about one another. We are all relatively healthy and happy.

But today I write about what I am thankful for, but would never say at a dining room table full of people. Most people choose their cream of the crop thoughts to share among family, friends and relatives.These are not my cleaned up versions, so be prepared.


Here are some of the things I am thankful for throughout the year:
  • Turning off the alarm on a day when there is no school.
  • When my friend brings over her recycled New Yorker magazines.
  • Nutella for breakfast.
  • A sink clear of dishes. This does not happen often enough.
  • When all the kids are tucked in for the night and I can sit bundled under a blanket watching my favorite show.
  • Ben pooping on the potty.
  • Remembering to make a grocery list and actually bringing it to the store.
  • Having gas in the car.
  • Nutella for snack.
  • Coming up with a brilliant dinner idea by 4pm that includes something healthy.
  • Mondays and Thursdays - kids buy their lunch.
  • Having a relaxing date night with Ryan.
  • My exterminator, thanks Lee.
  • Getting Ben's orthotics and shoes on before the bus arrives at our door.
  • Authors who write fiction novels that allow me to escape reality for a little while.
  • Nutella.
  • Air freshener in my car - covers all smells well.
In this time of deep appreciation, think about what you are thankful for, but may not share it out loud for your public to hear.

Happy Thanksgiving!

Wednesday, November 24, 2010

Special Exposure Wednesday: School Photos

I remember, and so does my mom, school portrait day when the teacher insisted on parting my bangs for my photo in the 2nd or 3rd grade. That photo is embedded in my brain forever. And those were the days without touchups or perhaps even makeups, because Lord knows I needed a retake.

This year when Ben brought home paperwork for school photos and I had to choose a background and package BEFORE I ever saw a photo, I was not pleased.  I love my son, but I do know how difficult it is to get a good photo out of him. I am unwilling to pay for a shot of the side of his head or even better, Ben yelling at the camera. I have enough of those in my personal collection.


Metro Portraits did a great job - they captured the essence of Ben. They generously gave me permission to display Ben's photo on this site. When I called them to describe my hesitancy to pay for something sight unseen, they assured me that they would refund me money if I was not happy with the final outcome. Needless to say, I am very pleased.

Check out more photos here.

Tuesday, November 23, 2010

Wrench in the Plan


Since Ben's seizures started last spring, it really has been a long and painful process. Always taking Ben's health for granted, I had no knowledge of seizures or their effect on someone. Ben had been making tremendous progress with his gross motor skills. There is a definite difference since the seizures began and medication started. He seems less motivated to walk holding our hands, use his walker or even try to stand. It could be the medicine makes him sleepy or unmotivated. It is hard to tell.

Although we have tried a few different medicines in differing doses, Ben continues to fall forward. This unexpected falling puts a wrench in how Ben spends his day. At school, he can fall out of his walker or while sitting in a chair, hitting his head on the table in front of him. At home, while crawling around, Ben can lose control and hit the floor with his face. He has no control when it happens and cannot put out his hands to stop. When riding his new tryke a few weeks ago, he fell forward at least 30 times banging his face on the metal bar each time. In the last few months, bumps and bruises are continuously on his face. His teacher calls me often to make me aware of accidents at school.

Because Ben's safety comes first, changes have been made at home and in school. He has more support in the walker at school. We rely on the stroller more at home. The school is now asking if they can use a wheelchair for transitioning from lunch and specials. In many ways his independence has diminished and his motor skill development is at a standstill.

In December Ben is scheduled to have a Video EEG at the hospital. The staff will connect him with sensors that will read brain activity while he is in the hospital room. They can watch his physical actions through the video monitoring and compare brain activity through the EEG. We will be there at least 24 hours, but could be longer if they do not get the information needed. They want to see if the falling forward is indeed seizure activity.

It is easy to forget where Ben was just a year ago, doing so well in his walker and TAOS. Even in the beginning of the summer, he was starting to peddle his tryke on his own. The forward progression has slowed because of the seizures and the way they need to be managed.

I worry that this downward trend is permanent. It makes me very sad and angry. I am not ready to see Ben in a wheelchair full time. I think that is giving up on him. Perhaps, in time, I will see it as his best option for mobility. But I am not there yet.

Monday, November 22, 2010

Magic Marker Monday: Stepping Stones


My parents started the tradition of the Halloween Witch when I was a child. The Witch brought art supplies on the day of Halloween, usually hidden somewhere in my room. As soon as our children were old enough, we started the same tradition.

This year, Ben received supplies to make stepping stones. Since this was the prized gift, he shared with his brothers. Ben did not mind because he didn't love having his foot dipped in cement, which I thought was the perfect way to decorate the stones.

Instead of body parts, we added marbles, buttons and glitter. Easy and inexpensive to do - fun way to spend the afternoon.

Check out other works of art.

Friday, November 19, 2010

Spreading Hope Through You Tube


After watching Modern Family on Wednesday night and they talked about Flash mobs, I had to know more about them. Watch this and feel good about the world around you for at least a few minutes. Happy Holidays!

Thursday, November 18, 2010

R Word


On Veteran's Day, the boys had the day off so we went to the park. There were only a few other kids there with us. While running and climbing on the playground equipment, the other kids got into a name calling contest that involved only one word - "Retard."

I do remember using that word as a kid - I flung it around with words like stupid, idiot, dummy. By the time I was in college, I had more sophisticated shorter words to use, so the "R word" left my vocabulary.

At the park, I thought for a second about saying something to these kids. But what would I say? They saw me with Ben and I don't think they were connecting the use of their word with him. It was something they heard somewhere and were trying it out on each other. I chose not to say anything, but it did awake in me the need for more information about the debate going on about the words, Retard and Retarded.


Although I am aware of the  R-Word campaign, I was unsure of its focus. Is it about the use of the words as a slang derogatory insult? Or is it the use of the words as a label or diagnosis?

After looking over the site, it seems that the goal is to end using words like retard and retarded as a way to insult someone or something. The site's supporters are passionate about what they are trying to do. If they are able to raise awareness about mental retardation and get people to stop using the words in a derogatory way, then I support them.

The first time Logan and Sean use those words, because I know they will, I will talk to them about the meaning of the word and how people use it in a mean way. But I will have to do that for a lot of words, because unfortunately, there are so many ways to be mean to someone.

Wednesday, November 17, 2010

Tuesday, November 16, 2010

The British are Coming!


This weekend we found out that Ben loves Shaun the Sheep. Like Bob the Builder, it is a British show for children.


Luckily the other boys seem to enjoy Shaun the Sheep too. Sean calls it "my sheep." And Logan is just happy it's not Bob.

And with Ben's love for British humor, we may try Kipper next...

Monday, November 15, 2010

Magic Marker Monday: Creative Birthday Gifts

 My birthday was last week and my dear friends helped me celebrate with a girls-only party at my house. I made it clear that the rule, "your gift is your presence" was in play.

But loopholes can be found. A long time friend made me a certificate attached to a water bottle, congratulating me on turning 40 and running 12 races this year. It was a warm and fuzzy surprise, heartfelt and very original.

Another friend, going back over 20 years, lives several states away, sent me 40 memories from over the years on strips of paper. I laughed reading the things I had forgotten and smiled at the good things she said about me.

And at my party, a friend suggested everyone go around and say how they knew me. Some people shared their very first time meeting me or something I had done for them. It turned into more great memories. I wish I had videotaped it to watch on days that need brightening.

Thursday, November 11, 2010

Full Circle


One of the first mornings I arrived at Ben's camp this summer, a man was out front of the recreation center on his cell phone. He was in a wheelchair, but managed to open the door for us. The next several mornings, he was outside when we arrived for drop-off. I later learned from him, that he waited each morning for us so he could help me. He also was there at pick-up time, but inside the building working with the teen camp located there. I learned that his name was Felix.

It became routine for Felix to open the door for us and keep an eye on Logan and Sean. We became friends in the way you do when you see someone twice a day, everyday, for 7 weeks. We talked, shared pleasantries at first, and then got into more meaningful talks as the summer progressed. Felix is 31 years old and has Spina bifida.

At the same time, the recreation director for the building was also around. At first appearance, she was gruff, unfriendly and had no interest in engaging in conversation with me. Something about her made me want to try.  And I did with little success.

Our vegetable garden this summer provided so much that I brought in baskets of zucchini, peppers, cucumbers and okra for the camp counselors. On one of these occasions, I offered the recreation director first dibs. Although she hesitated, I saw the ice slowly melting. Food does wonders to bridge gaps, hence the saying, "Break bread together."

Blanche Penn, her name, is a remarkable and dynamic woman. She is actually mother to Felix. I ended up spending time with Ms. Penn, learning about her struggle 25 years ago fighting to get her son a fair education. She made it clear that because of her advocacy, she paved the way for parents like me.

On Tuesday, I listened to 117 parents, children and community leaders speak about how the proposal to close schools was unfair, racist and ill-conceived. Ms. Penn was one of these speakers. And she left an impression on everyone. I am sure 25 years ago, when she was fighting for her son, she was a force to be reckoned with, because today, 25 years later, she is fighting for other people's children and she is amazing.

I felt a strong sense of pride knowing that I have met this woman and her son. I can appreciate a small amount of the struggle she has faced.


More about Blanche Penn and the activities she is involved with:
Winners Plus Agency
Gray Fox Cheerleaders
Partners in Policy Making

Wednesday, November 10, 2010

Special Exposure Wednesday: Saying Good-Bye

The Board of Education voted to close Ben's school for next academic year. The teachers and staff have been wonderful to our family, treating Ben with love, care and respect. It will be sad to say good-bye to all these people prematurely.

Tuesday, November 9, 2010

Save Yourself or Save the World?

This was the question posed to me by Logan. To him, there was a correct answer and because he wanted me to get it right, he sounded out the words for me. They were:

save the world

Big answers for such a little boy. And because of all the things that have happened over the past few weeks, I think about Logan's question often. In his open and innocent 5 year old mind, things are black and white. As adults, we see gray, sometimes too much.

Often we cannot save ourselves, let alone the world. Perhaps if more of us were saving the world, less would struggle with saving themselves.

Monday, November 8, 2010

Magic Marker Monday: Rock Men

Logan made these men from rocks he found when panning for gems at Tweetsie Railroad this summer. We cleaned a closet and found the box of gems.

And just in case you were wondering about what the Rock Men were doing: The man on the left is on the phone and the two of them are friends. They are standing in grass.



For more works of art, check out 5 Minutes for Special Needs

Friday, November 5, 2010

New Decade

I turn forty today. I have been preparing for this momentous occasion for almost a year. Change is hard for me and the upward progression in my age is really difficult.  There was a time in my late 20's and early 30's when I did not tell anyone my age. My younger sister often joked that I had turned 29 so many times that she had become the older sister.

My sister and mother have been supportive by surprising me for almost two weeks with a small gift every day. My sister has a way with words and has sent me very funny poems, as well as, heart felt warm notes. 

Planning celebratory events to "ring" in the new decade was a way for me to transition my way into forty. The 12 Race Challenge, our weekend trip to Charleston and a party on my birthday with all my girlfriends were ways to make me feel positive. And it has worked - I feel comfortable saying, "I am forty."

Thursday, November 4, 2010

Resources

Here are a few places to check out:

Device loan - The device loan program helps individuals try out equipment in the location they will use it:  at home, work, school or recreational activities.  It’s a “try before you buy” approach which helps individuals and funding agencies make wiser choices. A wide range of assistive technology devices are available including augmentative communication ( for people with limited speech), computer access, low-vision aids, assistive listening, aids for daily living, switches, environmental controls, adaptive toys and recreational devices. Devices can be borrowed for a two week period.  Toys and other AT for young children (birth to 5 years old) may be loaned for longer periods of time.

WCWAA Challenger Sports 
The mission of Challenger Sports is to provide sporting opportunities for the special needs community to reach individual and team potential by providing participants, families and those who serve them with training, support and resources to grow social, emotional, physical and developmental skills.

Wednesday, November 3, 2010

Special Exposure Wednesday: Hugs for Halloween


Ben is hugging Trilby from the Raggs TV Show, a PBS show created in Charlotte. Ben and Trilby would have made the Guinness Book of World Records in the Longest Hug category (which has not been attempted yet) had we not broken them up to give a turn to the other kids waiting in line.

* Addendum to this post: In March of this year, the record for the Longest Hug was established - 24 hours and 17 minutes. I was thinking about attempting to set the first record with Ben if it had never been tried, but a full day of hugs may even be too much for Ben. Now a Bob the Builder Marathon...


Check out more photos: www.5minutesforspecialneeds.com

Tuesday, November 2, 2010

Winner's Circle


Our mornings are hectic just like everyone else's. I found myself yelling more than I like to so I came up with this crazy idea - and it is working.

We all went to the trophy store and chose three trophies. The trophies were "engraved" with one of these:
  • Today's Winner: Good Breakfast Eater
  • Today's Winner: Excellent at Following Directions
  • Today's Winner: Showing Good Behavior
Rules:
  1. Each morning, Ben, Logan and Sean have the opportunity to receive one or more of the trophies.
  2. At the end of the morning, they may be presented with a trophy. 
  3. Not everyone has to get a trophy. 
  4. The winner keeps the trophy in their room for the day (think Stanley Cup). 
  5. At night, the trophy goes back on the shelf in the kitchen, ready for the next morning's ceremony.
Why is it working?
  1. My focus is on the boys' good behavior, rather than the things they are doing wrong. I am yelling less.
  2. Since I am in charge of giving out the trophies, I am looking for positive behavior because I want them to succeed.
  3. Kids are involved in the solution. They know what is expected to get one of the three trophies, so their focus is on the goal.

    All three trophies cost $16. Small price to pay for peace.

Monday, November 1, 2010

Magic Marker Monday: Self Portrait

Ben, age 7

Check out www.5minutesforspecialneeds.com for more works of art.