Monday, January 31, 2011

Magic Marker Monday: Full Bloom

Flowers made from tissue paper and pipe cleaners.

We copied this idea from Michelle at 5 Minutes for Special Needs - it sure brightened a gloomy day!
Find out how to brighten your day.

Saturday, January 29, 2011

Time to Vote!

Over the next two weeks, please cast your vote for our Amazing Race Team Name. You may vote as many times as you would like. The box to the right of the eSpeciallyBen site has the information.

On another note, all 15 Ben Bookmarks have sold - raising $150! I will put in another order if I get enough requests. Thank you for your support.

Thursday, January 27, 2011

Fighting the Unknown

Last fall, I spent a large number of my hours fighting the recommendation for the school board to close Ben's school. I spent countless hours talking on the phone, sending emails, attending meetings and even more time worrying and stressing about the situation.

What exactly was I fighting? I did not want Ben's current school to close. I wanted him to stay where he was with the same teachers, same students and same environment.

Why did I want these same things? I was happy with where he was and I knew the teachers, students and environment. We were comfortable there.

I was really fighting the unknown. I made the assumption that the unknown would be bad.

Two weeks ago, I wrote about Ben's new placement for the fall 2011 and how I was thrilled with the new school. I met with the principal for two hours recently. Her philosophy about inclusion blew me away. Her background is in working with special needs children and she lead an area of the Exceptional Children before becoming a principal. She addressed my concerns and answered my questions. I do not have any reservations about Ben attending school there.

What have I learned? Sometimes the unknown can be even better. Perhaps Ben will be challenged through inclusion. I would not change that I was a part of the protest, but I think it is important to keep things in perspective, and understand all the options. Unfortunately, in situations like the one we were fighting, information exchange is low and panicking emotions are high. Assumptions are easily made on both sides.

When we fight something, we usually get it in our heads that whatever the change will be, it will be a negative experience. I am reminded of Who Moved My Cheese? In this leadership book, the mice go into work every day to get their cheese and then one day they come in and the cheese's location has been suddenly moved. The mice freak out, like mice do. In the end, the mouse that survived this change was the one with creativity, ingenuity and the ability to be flexible. I want to be that mouse.

Wednesday, January 26, 2011

Special Exposure Wednesday: Walking in the Snow

Ben enjoyed our quick walk around the block during our Winter Blizzard with 2 inches of the white stuff.

Check here for more photos of special kids.

Tuesday, January 25, 2011

Amazing Race: Vote for Our Team Name


Thank you for your great responses to my request for team name ideas for Amazing Race. The winning name will be posted on t-shirts and banners. We will show our team spirit to Charlotte.


Beginning Friday, you may vote for the one name that you like the best. A box on the right-hand side of this site will have these choices. Of course, you may vote as many times as you would like. Here they are:
  • Bentastic
  • Ben the Builder
  • Ben and the Builders
  • eSpecially Ben
  • Peanut Butter and Benanas
  • The Red-Haired Fighters
  • The Amazing Ben 
  • Unfinished Benness (The TV show's theme this season is Unfinished Business)
If you have a creative jolt in the next few days and want your idea added, late entries will be accepted. Just email them to me at vanessainfanzon@gmail.com or include them in the comment section below.

Remember there will be a prize for the creator of the winning name!

Blood, Sweat and Tears

I have wanted to write this story since it happened, but then life got too busy and the emotion of the experience dissipated. As weeks passed, it was like, as my long-time friend, John, used to say, "It's out of the moment." Circumstances over the last month make it important for me to tell the story now because it marks a big change in Ben.

Christmas Eve last year, we attended the family service at our church and had an absolute wonderful time. Since I was pregnant with Logan, we have attended services three times at this church - Logan and Sean's baptism and last Christmas. To our credit, before Ben was born, we were active participants and luckily, church members remember us from then.

So this year, I had high expectations for the Christmas Eve service. As usual those expectations were thrown out the window as soon as we sat down in our pew. Ben was very noisy, so I took him to the back of the church in his Convaid chair. Using eye gaze, he lead me down the stairs to the basement of the church. At this point I was carrying Ben because the stairs prevented us from using the chair.

Leave it to Ben to find the room with children. They were waiting for their appointed time to perform in the pageant. I recognized one mom. She was friendly toward me, but it was obvious that everyone was getting ready for their performance.

Immediately, Ben saw cookies and drinks and made himself at home at the table. Ben sat beautifully on the chair and ate two cookies and drank a juice box. He was very excited to be a part of these festivities. Although I felt a little uncomfortable busting in on this group, I was delighted that Ben was enjoying himself. I can live with uneasiness if it will make my children happy.

Everyone was getting ready to leave the room, the excitement was building for the children and I knew we should get out of there. I placed Ben on the floor in a sitting position so I could clean up the crumbs from his snack. Before I could react, Ben took a dive to the floor, hitting his chin exactly in the same place he has hit it every time he has this falling forward seizure. I exclaimed, "Damn!" - obviously forgetting where I was. Fortunately, no one noticed anything.

I scooped Ben up and ran/walked to the sanctuary, put Ben in his chair and got to where Ryan and the kids were sitting. I quietly showed Ryan what happened. I was shaken and Ryan was visibly upset too. At this point, Ben was bleeding profusely from his chin. Ryan made the decision to leave immediately. I grabbed the kids, and we were out of there in seconds.

We determined Ben did not need stitches or glue, just a good cleaning and antibiotic ointment. I broke down in the car. It was Christmas Eve and because emotions build over months, the enormity of our situation came crashing down on me at that moment and tears were my release. I was tired of the seizures disrupting Ben's life, his progress and simple things like attending church.

That was December 24, and Ben has not had another one of those seizures since that day. Let me be clear, Ben is still on seizure medicine and if we took him off, he'd have seizures. We were seeing "extra" seizures that the medication was not stopping. Since the start of them this summer and fall, Ben's physical progress had stopped and, in some ways, diminished. Our hopes for him walking, even with a walker, were looking grim.

Last week, I started putting it all together. When nothing happened at the EEG, I thought back to when I last saw Ben have one of the falling forward seizures. I could not remember anything after the Christmas Eve event. His teachers and private therapists had not mentioned observing any either. Then things began to click into place - Ben has been a crazy, energized little bunny these last several weeks. Nothing tires him out. He has been swimming, walking with his walker at the mall, museums, YMCA - and still going full-force at 11pm at night.

Not sure why the seizures stopped on that Christmas Eve. Perhaps science has the answer, but I will chalk it up to answered prayers.

Monday, January 24, 2011

Magic Marker Monday: The Paper Plate - More than a place for food

Christmas Wreath by Sean, age 2 1/2

Fall Wreath by Ben, age 7

See what other little artists are up to.

Saturday, January 22, 2011

The Countdown Begins: 50 Days

 50 Days Until Amazing Race

As many of you have read, Ryan and I will be contestants in our local version of Amazing Race on Saturday, March 12, 2011. The county parks and recreation department is organizing this event to raise money for the scholarship fund for Therapeutic Recreation camps offered during the summer for people with special needs. To catch up read here.

 

We still need your support! 











 1. Donate $10 and receive a Ben Bookmark. Proceeds will be sent to the scholarship fund. Send me a private email at vanessainfanzon@gmail.com.

2. We need a team name. We have two suggestions for team names: eSpecially Ben and Bentastic. We want a few more so everyone can vote for their favorite. Get your creative juices flowing and send us your suggestions in the comment section below. There will be a prize for the person whose team name is chosen.


Prize categories for Amazing Race were announced this week: Team Spirit, Most Funds Raised and Grand Prize - a Charter Dive or Charter Fishing tour off Topsail Island. Help us win!

Thursday, January 20, 2011

The Real Deal: Video EEG

Definitely the BEFORE photo!
Ben was scheduled to have this Video EEG in December, but he came down with bronchitis and a double ear infection so it was postponed until this week. We are lucky this happened because I read a post on 5 Minutes for Special Needs about EEGs and asked the blogger a few questions. She emailed me with answers and added a lot of other information. Without her insight, I would have been unprepared for this experience. Thank you Gina at Special Happens.

Because I lacked information to even ask the right questions, I thought I would document our visit and others can learn from our experience. Of course, hospitals and doctors are all different, but this will at least give an overview of what to expect.

What to Bring
  • Button front shirts - once the electrodes are on, nothing is getting over that head
  • Extra pants, comfy clothes for you and your child
  • DVDs or Videotapes, music, games, books - some hospitals provide these things, but ones from home may work better for your situation
  • Extra snacks. Our hospital provided drinks and meals, but no in-between snacks
  • Pillow & sleeping bag for person staying over night with child
  • Toiletries
What to Expect:
  • Be sure to ask what kind of support is given. In our hospital, the unit is considered a "well-unit" - in other words, "DIY." There is minimal nursing staff, so I was in charge. I was even told where the extra toilet paper was located.
  • Find out how long your stay will be. We were set for 24 hours, but others can stay for as long as 72. Ask about how many "events" they want to see before they will let you leave. An "event" is a seizure.
  • Find out what the procedure is for discharge. Does the doctor have to call in? Visit?
  • This will be a stressful and tiring experience. Ben is a go-with-the-flow kind of kid, but this stressed him out. After the electrodes were on, we gave him an hour to chill while watching Bob the Builder.
  • Ask about the rules. Ben could not leave the room once he was hooked up to the electrodes. Several times, Ben took my hands and tried to lead me out the door.
  • Using the toilet may be difficult. Ben is trained on a schedule, but with wires dangling from everywhere, it made it hard to keep to our regimen. He also used it as a time to try and rip off the wires. Ben does not walk on his own and that added another dimension of difficulty. We just did the best we could.
  • Plan on your child staying home from school the day of discharge. Between lack of sleep, hair full of goo and just whacked out schedule, they will need an adjustment period.
24 hours in this room.
Surviving the Stay
  • Plan for breaks. I left for an hour and felt like I had been gone forever.
  • Ask another adult to help in the beginning. Checking in and getting the electrodes on were tricky and having another adult there was essential for me.
  • Plan for OT, Speech and PT to visit for their sessions. This breaks up the time for you and your child. Ben's speech therapist came by and it really helped for Ben to have that interaction.
  • Check to see if siblings can stop by. Logan, Ben's brother, visited and it was clearly a highlight for Ben.
Basic Procedure

Ben's thoughts: Okay, what have I gotten myself into now?

After taking measurements, the EEG technician marked Ben's head with a blue pencil.

The technician cleaned the spots with a lemon scrub. This removed the oil from scalp and allowed for a good connection.

Then electrodes were glued to Ben's head.

After applying electrode and gauze with glue, cold air was added to seal the glue to head. The glue smelled like Compound W and the air machine was loud. These did not affect Ben, but other kids with certain sensory issues may be bothered.


Positioning Ben's head took a lot of concentration and strength.

The procedure could take 20 minutes. It took us 45 minutes because Ben moved a lot.


Everything was wrapped in gauze, taped and then covered with the fancy "crocheted" hat.

At 3am, Ben tore off the gauze for the 4th time. With it off, he seemed happier. He listened to me when I told him he could not pull on the wires. Ben has a huge problem with things, like hats, on his head, so taking the gauze off helped.

The wires were connected to this box, which were connected to the wall monitor.
The nurse monitored the Video EEG from her station. When the lights were off in the room, the camera used infrared technology to see Ben. Only a small view of the room could be seen at a time. The nurse adjusted the camera's view depending on Ben's location.

Our neurologist had access to the video from her office across the city. Some neurologists have the software at home and can watch from the comfort of their home. Our doctor did not visit, but she called to speak with the nurse twice.

Before leaving, the EEG technician removed the electrodes using strong smelling acetone, essentially nail polish, to dissolve the glue. (At home, several hair washings with a comb and baby oil removed everything.)

As we walked through the parking deck toward our car, Ben let out a few hurrah's and his smile continued as we drove away. His excitement was still obvious when we entered our house.

It was definitely an ordeal. Being prepared physically and emotionally is essential. Today, I am exhausted and it may take a few days to recover.

Here is an article written by Gina St. Aubin - Here's 10 helpful hints you should know. If you have anything to add from your own experiences with a Video EEG, please feel free to add in the comment session.


Wednesday, January 19, 2011

Tuesday, January 18, 2011

It's Not a Toothache


We are at the hospital for Ben's Video EEG. Ben had 20 electrodes glued to his head yesterday around noon. The gauze wrap is supposed to keep him from pulling at the wires. I am supposed to keep him from pulling at the gauze. They ran out of gauze last night after Ben pulled it off for the third time.

We cannot leave the room for 24 hours.

It is 6:30am and we have a few more hours to go. Ben's 4th gauze wrap is off and staying off. We've both had just a few hours sleep.

More about the procedure in the next few days.

(And if you are wondering, yes, that is Ben's mad face.)

Monday, January 17, 2011

Magic Marker Monday: Whoooo you talking 'bout?

Ben, age 7
This is a great project for Ben because he can add the "feathers" with minimal assistance.

More artists at work here.

Sunday, January 16, 2011

Eating Crow

This has nothing to do with kids or special needs, but thought you might need a good laugh today. Enjoy!


The other night, my wonderful husband was not too wonderful. He was grouchy and snapped at me. In retaliation, I huffed my way into our bedroom, slammed the door and went to bed.


The next morning at 6:15am, Ryan came into our bedroom. He leaned over me and kissed my cheek and began a very sincere and thoughtful apology. Groggy as I was, I heard voices, other than his in the room and told him. Ryan brushed my garbled words aside, saying that it was just the radio that was on in the kitchen. Waking up further, I told Ryan the talking was coming from his pocket. Although still not believing me, he reached into his pocket and pulled out his phone.


Sure enough, Ryan had "pocket-called" the owner of the company for which he works. Ryan quickly got on the phone and asked if he had heard anything that was said. Luckily, it seems that the owner did not hear a word, or so he said. Never good to have your boss hear you eating crow.

Saturday, January 15, 2011

Back in the Saddle

I received an email today from a long time friend and former colleague who offered me the opportunity to facilitate a portion of a retreat for a group of college students traveling to Guatemala on a mission trip in March. When I worked at the local university, I did this for her every year for at least 6 years. Once Ben was born and I cut my hours back and then eventually quit all together, I stopped leading these activities. I cannot say I missed it. I had too many other things to do.

But when I received the email, I wrote back "Yes!" immediately, without consulting husband or calendar. I contacted the partner I worked with on this retreat and found out that he was delighted I was willing to do it again. He has been doing it solo for the past several years.

I have already come up with a sample agenda and activities. To my surprise I had fresh, creative and thoughtful ideas. As a stay at home mom, being around children most of the day, and focusing on home and family, it begins to feel like doing something else is out of reach. I feel that people who only know me as mom and wife, who never knew me when I had a career, look at me in a different way. It is my own insecurities that I feel this way. But dammit, sometimes I want to say that I have done stuff too - I have important skills other than changing a diaper in less than a minute and...well that's all I can think of.

So I am excited at this opportunity to get back into the game, even if it is just this once for now. As the boys get older and some things become more manageable, I hope to branch out and work more. For today, I am just happy that I am still remembered as a competent leadership facilitator.

Friday, January 14, 2011

Shameless Promotion!

Nominate Your Favorite Special-Needs Sites and Books

If you feel moved to act after reading the information below, please do so. The more nominations I receive the better chance I have of getting in the final voting process. Thank you for your help.

The 2011 Readers' Choice Awards on About.com


About.com's 2011 Readers' Choice Awards will showcase the best products, features and services in multiple categories, from technology to hobbies to parenting. Nominations will be accepted from Jan. 13 to Feb. 4 at 11:59 p.m. EST.

Fill out this form in its entirety and click "Send Feedback" to have your favorite Special-Needs sites and books counted for our 2011 Readers' Choice Awards for Parenting Special Needs. Check back with Parenting Special Needs at About.com awards page to learn about finalists in other categories. 

Winners will be announced March 15. There's no prize -- just the bragging rights that come with getting recognized by the readers of one of the biggest networks on the web. on Feb. 11, 2011 to see if your favorite special-needs sites and books were nominated, and visit our central awards page to learn about finalists in other categories.
Question: What Are the About.com Readers' Choice Awards?
Answer: The 2011 About.com Readers' Choice Awards will showcase the best products, features and services in dozens of categories. Readers' Choice grew out of a successful awards program on our Computing channel, and it's being expanded this year to include multiple channels, from technology to hobbies to parenting. About.com Parenting Special Needs is one of the participants this year. Nominations will be accepted starting Jan. 13, 2011. Voting will take place from Feb. 11 through March 8, with winners announced March 15. There's no prize -- just the bragging rights that come with getting recognized by the readers of one of a leading website owned by The New York Times Co. To learn more, visit awards.about.com. For information about the awards to be featured on the About.com Parenting Special Needs site, keep reading this FAQ.


Question: What Qualifies a Site for "Favorite Special-Needs Parenting Blog"?
Answer: The first category for the Readers' Choice Awards for the About.com Parenting Special Needs site is "Favorite Special-Needs Parenting Blog." To qualify for this award, a blog should be:
  • Written by the parent of a child with special needs
  • An active blog with recent postings
  • A blog with the primary purpose of sharing personal parenting experiences, rather than news or advice
** Everything in italics is taken from About.com's Special Needs Site. **

Thursday, January 13, 2011

People Making a Difference

In the past two weeks I have come across three amazing and inspiring opportunities and stories. Please look them over and share with others.

Twelve In Twelve
The first is about a father and two sons living in Charlotte, who over Thanksgiving Dinner, hatched a plan that will forever change the course of their lives.  They will travel to 12 countries in 12 months working in orphanages, schools, townships and with tribes to build a network for change.

Last year, I read a book called, A Million Miles in a Thousand Years by Donald Miller. The book's focus is about how to make your life read like an interesting and meaningful story. The chapter that most interested me was about a family that transformed their lives by doing a large scale global community service project together.

Twelve In Twelve is an example of a family leaving the comforts of their home and routines for the unknown, in hope of inspiring change in the world. Probably, they will come back the most changed, for an experience like that will be unbelievable. The father, JD Lewis, wants "to teach [his] sons to be the men the world needs."

Wampler Foundation
Steve Wampler, is the founder of an organization that raises money to send children with physical disabilities on outdoor adventures.  By working with local parks and recreation organizations in California, as well as a wilderness camp he attended as a child, the foundation has sent hundreds of children through exciting experiences including scubas diving, water skiing, mountain climbing and cycling.

Did I mention that Steve has a severe form of Cerebral Palsy and gets around in a powered wheelchair?

Island Dolphin Care
Swim with the dolphins - really.

A mother saw how her three year old son was positively effected by swimming with the dolphins after he suffered a stroke. She decided to help out other children with special needs by starting a non-profit organization that enabled children to swim with dolphins. Since 1990, they have been running programs for children with the help of teachers, social workers and...the son who was the inspiration for it all.

Wednesday, January 12, 2011

Special Exposure Wednesday: Apple a Day...


Ben had a wild one last week. Getting him to bed before midnight took Benadryll, Bob and a Battle (which he typically won). He was in such a great mood - all he wanted to do was move, explore, climb and participate in everything. And this was after a full day of school and an hour of therapy.

In these photos, Ben decided he wanted to sit on the high stools at the counter. Before I knew it, he grabbed an apple and started munching.



Tuesday, January 11, 2011

The "Who do you love more?" Game

I have never liked that game - Who do you love more: Me or Daddy? Sean or Ben? It is a close relative to another one of my not-so-favorite questions, Who would you save from a boat if you could only choose one? Logan has reached that age where he likes to pose these uncomfortable questions knowing it makes us squirm.


Tonight, I had the rare occasion to snuggle with both Logan and Ben. Logan knows that Ben has a lot of love for him. If Logan is in the room, everyone else is chopped liver. Ben stares at Logan, "talks" to him, tries to climb next to him - he is clearly the favorite based on this behavior. And Logan is very proud of the fact that he is the favorite.


During this somewhat quiet time on the sofa, Logan decided to take some photos of Ben. Then he asked Ben who he loved more: Mommy or Me? Ben could not climb over me fast enough to lay on top of Logan. Ben stayed there for quite awhile too, just snuggling on Logan. Logan re-asked the question several times, and the crystal clear non-verbal answer was always the same: Logan.


Oh well - I know where I stand in this family. Although I must mention, just in case you are feeling sorry for me, Logan asked Sean this same question the other day and I was the winner! Thank goodness for two year-olds - forever faithful to their mom.

* Dates on photos are totally inaccurate.

Sunday, January 9, 2011

Magic Marker Monday: Photo Crafts

 These crafty gifts will forever be my favorites:

From 2005 - My first gift from Ben. He is two years old here. It is made from a jar lid.
From 2010 - Ben is seven years old.


See more works of art.

Friday, January 7, 2011

10K and 10LBS


New Year, New Challenge:

Run four 10K races.
Lose 10 lbs and keep it off.




What's your challenge to yourself this year?
  • Write it down and you will feel obligated to carry it through.
  • Make a pact with a friend or relative and you have accountability.
  • Make it public and then you really have to follow through with it.

Happy New Year and Good Luck with your resolutions.

Thursday, January 6, 2011

Divine Intervention or Good Luck?

Things sometimes have a way of working out and when they do, it is like a beam of light is shining down on our family from the heavens.

An aside: Just watched George Carlin's Its Bad  for Ya and he makes it clear that any reference to a heaven above is pure poppy cock, but he did not say it quite that way. He used a lot of $#%@*

There have been too many times in our life with Ben that divine intervention had to be figuring into the situation. The first time we sent Ben to preschool was when he was two. I researched many places with weekday schools, and most churches were not accommodating to Ben's special needs. One even went as far to say that they had no idea what to do with him on rainy days because their rainy day room was upstairs. Heck, if they couldn't figure that out, then the sunny days wouldn't be much better.

We did find a church, 25 minutes away who welcomed us with open arms. On the first day of preschool, we found out that the teacher happened to be a former special needs teacher AND she had a son with low-tone, which at that time was all we knew definite about Ben's medical condition. Tell me some special force was not involved in that one. I spent the year amazed at how Ben landed in such a wonderful school.

Ben's current school will be closing at the end of the school year. Today I received his new assignment. It is our home school, only 1 mile from our house. They are adding Special Academic Classes to the school. This is good - location is great.

But it gets better. I see who the principal is - she was the principal at Ben's first public preschool when he was 3 and 4 years old. I email her a quick note just to see if I can meet with her, hoping she remembers me.

I get home from a PTA meeting and listen to the message on the answering machine. It is from the principal. The message brings tears to my eyes. If I had any doubts about this change in schools, they have left me. The principal remembers our family and cannot believe the luck that Ben will be at her school. The message went on for several minutes about how excited she was to hear from me and how I can come by tomorrow to meet with her and get a tour.

I feel relief. I think it will all work out okay.

Back to the divine intervention or good luck - I like believing that God and angels watch over us. And maybe it's George Carlin smiling down on us, hoping we see that he was wrong in his final act.

Wednesday, January 5, 2011

Tuesday, January 4, 2011

Bob On My Mind


I know I have watched Bob the Builder one too many times when these thoughts cross my mind:
  • Perhaps Bob could be on Dancing with the Stars. He does a mean Salsa.
  • What is Mrs. Percival really saying when she asks Bob to meet her at her house for dance lessons? Is she disappointed when he doesn't show?
  • How does Wendy feel when Bob says, "Wendy, I don't know what I would do without you." Her look seems to say, "Bob, I love you. You are the man of my dreams."
  • It is truly sad that Bob does not get to see his identical twin brother, Tom, very often.
  • Wendy could really compete on Skating with the Stars. She's been an Olympic Skier and a marathon runner. She's truly an athlete.
Like I said one too many times...

Oh and I found a site that actually discusses the possible relationship between Bob and Wendy...so I am not that far off base.

Monday, January 3, 2011