In our house for the last few years our summers have been filled with pedal pulls.  A pedal pull is a contest where kids from 4-11 years of age compete to see how far they can pedal a tractor with a weighted sled behind it.  In the Midwest during the summer many of the little towns have festivals and at many of these festivals they will have a pedal pull.  So our Saturdays (sometimes Sundays) involve us hopping in the car and going for a road trip to different small towns and watching our kids compete in these pedal pulls!!

Our son Aidan just turned 11 years old and he as of today has 36 pedal pull trophies including a second place trophy at the Iowa State Pedal Pull last year and a fourth place trophy last year from the National Pedal Pull.  On August 12th he will be competing for the first time in the International Pedal Pull in southern Iowa.  He is a strong boy and he usually makes quick work of the pedal pulls that we attend each weekend.

The video below is of his winning pull in Riceville, IA this weekend.  There were five 11 year olds that signed up and of those five there were three kids that placed at the national pedal pull last year.  Aidan placed fourth in the boys and the first and third place girls were also there.

Cece also enjoys doing pedal pulls sometimes!!  We sign her up for the pulls and when they get to her name she decides if she is going to pull or not.  My wife usually helps her walk over to the tractor and places her on it.  With the help of Rick (the owner of the pedal pull company) Cece will usually go between 5-10 ft.  Then she gives Rick a big hug and in MN goes to get her free pop (in all the MN pulls they give a can of pop the kids).  While we are waiting for her turn to pull we walk around which means she is in her wheelchair and I am pulling her hand.   We see everyone that is there and they see her.  When she starts to pull something magical happens, everyone watches her like they watch everyone else but then someone will start to clap.  Then someone else claps and pretty soon everyone is clapping for Cece louder than they clap for anyone else that day.  Watch this video and you will hear the clapping and watch Cece give Rick a big hug!!

For our family this is better than the Olympics!!  Aidan gets to use his size and strength to amaze the crowd and collect trophies while Cece gets to pull for a cheering crowd, to get a can of pop, and a hug.  As parents with two wonderful kids for a moment we can forget about our crazy life and watch our kids have fun and be in the spotlight.  As a family we can do something that for a few hours on the weekend helps us feel normal.

It would be wrong for me to end this post without talking a little more about Rick and Sandy Scholbrock who own Kid Power Pedal Pulls.  When we started going to pedal pulls we met Rick and Sandy and over the past few years we have gotten to know them and we are proud to call them our friends.  At one of the pulls last year after Cece had pulled Rick stopped the pull and went into his trailer and pulled out a special trophy for Cece that has a toy John Deere tractor on it.  That is her one and only trophy she has and it proudly displayed on top of her dresser.  We see them a lot over the summer and every time when Cece has pulled Rick has taken the time to help get her on the tractor, encourage her to do the best she can and let her give him a hug.  Rick and Sandy you are truly amazing people and you will probably never know how much we appreciate what you do for our kids and others, thank you!!

Check out their website: Kid Power Pedal Pulls

This scene was even included in the original trailer for the movie but was removed after Actor Greg Grunberg (Heroes), who has a 15 year-old son with epilepsy, took offense to it and tweeted about it.  The director Brett Ratner apologized to Grunberg and removed that scene from trailer but he still left the scene in the movie.  Here is the original trailer:

Every year since our daughter was in school we have had the Epilepsy Foundation of Minnesota come to her class and talk to her classmates and teachers about seizures.  They explain what seizures are and what to do if someone has one.  This helps to take some of the mystery out of seizures and allows them to accept her for who she is and not make fun of her because she is different.  It is sickening to me that Hollywood would make fun of seizures in a movie to make more money.  The movie could have easily been as funny without making fun of a medical condition that millions of people have and that can be life threatening. How do we accept those that are different than us if we see “famous” people making fun of them?

I realize that some of you will think I am being too sensitive about this but having seen my daughter have 90 minute grand mal seizures and have to be airlifted in a helicopter on more than one occasion this sickens me.

What do you think?

Then there were the 90 minute grand mal seizures that required her to be transported to the hospital via ambulance and then to another hospital by helicopter.  That is a terrible feeling when you watch your child be placed in a helicopter and you know she will arrive before you are able to get there.  During those times as soon as we knew she would be transported one of us would get a ride to the hospital ahead of time so we could be there when she arrived.

Over the years there have been several times that I have been heading home either from work or someplace else and I will hear sirens.  The closer I got to home I would begin to realize the sirens might be for Cece and sure enough I have followed ambulances to our house and I have turned the corner on our street to see an ambulance and police cars parked in front of our house.  Because of this my heart will still stop when I hear sirens or hear an ambulance because in the back of my mind I can remember when those sirens were meant for Cece.  The ambulance staff have always been very good to her and provided good care but for some reason when I see an ambulance for a few seconds I am transported back to those times where she was having a bad grand mal seizure and I pray she is not having one at that moment.

My wife Regina and I have two children Aidan who is 10 and Cecelia (Cece) who is 9.  They were born 15 months apart and they have always been close.  Aidan is a great big brother to Cece and does all the things that big brothers do.  If you meet him he will proudly tell you he was the first person to make Cece laugh and he is probably right.

He does great in school and on several occasions he has drawn things that can help his sister.  Last year for his science fair project his project was about seeing if he was treated differently by people in public if he was walking normal, in crutches or in Cece’s wheelchair.  It was great to see him pick a project that directly affected his life.  This involved going to public places and dropping something on the floor to see if anyone helped him.  The project won him third place at his school and sent him to the regional science fair.  He did not win any awards at the regional science fair but he had a great time.

It was no surprise that again this year he chose to do another project related to Cece.  Cece is not able to verbalize clearly like other people can so she has a Vantage Lite communication device and she has an iPad2 with an app called Proloquo2Go.  His project was called “Will I get a different response if I ask where the bathroom is if I am using a communication device rather than my regular voice?”  He went to three retail stores and asked 10 employees at each where the restroom was (5 with the iPad and 5 just talking).  He found that people were more likely to take him all the way to the restroom if he used the iPad.

Today was the science fair so after school my wife picked up Cece from school so she could run the Vantage Lite and iPad 2 to Aidan for the judging.  This year like last year he won third place and the trip to the regional science fair!!  In addition he also received the “Hormel Institute* Outstanding Science Research Award”.  Neither of us were at the awards ceremony so we did not know what this award really meant.  I emailed Aidan’s teacher and this is what he said  ”A Hormel Institute Scientist judged all of the projects.  Aidan’s research and investigation stood out among all others as it has real world implications in the behavioral sciences.  As with the Division 1 and 2 judging, he was looking at the the scientific method, the presentation, knowledge level of the student, but most importantly, how it applies to the real world – our every day life  He was taken back by the level of Aidan’s project; so impressed with the risk he took and applying it to the real world.  He suggested that the principal and I contact the media so they can see that science fair projects are not just magnets and people’s favorite gum – but true investigations that impact our everyday life.”

This brought a tear to our eyes.  This is one of the many moments we have been proud of our son.  We love you Aidan!!

*The Hormel Institute is a Biomedical Research Center located in our hometown of Austin, MN. http://www.hi.umn.edu/

In honor of Valentine’s Day next week this weeks #specialsaturday theme is “Us Time”.

My wife Regina and I have been blessed by great parents who for almost every Friday night since our kids were little have given us a date night.  We always go to the same place to eat, El Mariachi’s, and order the same food, Las Tapatias with no pico de gallo and two waters.  We have been there so many times that the servers know what we are going to order before we even say it.  Our date night usually lasts 2-3 hours but it is the time I look forward to all week when we can spend time together just the two of us and for a short time forget about all the crazy stuff that is going on in our daily lives.

Usually once or twice a year we have been able to spend a night at a hotel just the two of us which is always fun.  We are thankful for parents and Cece’s Personal Care Attendants during these times as they take good care of the kids so we can spend this much needed time together.  It is weird to be away from the meal routines, getting ready for bed routines, sleeping routines but we need this time away to have a break sometimes.

Last year we were able to participate in a marriage seminar called “Weekend to Remember” in Rochester Minnesota.  It is a Friday night through Sunday afternoon Bible based seminar filled with wonderful speakers.  We really enjoyed spending the time together and refocusing on our marriage and being away from the kids for a few days.  This year we are still undecided if we are going to attend the seminar again but we have started a Weekend to Remember group page http://www.familylife.com/groups/specialparents . If you register for any of the seminars make sure to us the Group Name of SpecialParents to receive a discount on your registration.

We also try to spend a few minutes everyday after the kids are in bed to talk and sometimes watch movies together.  It can be challenging to find “Us Time” but in the long run it is essential.

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It would be wonderful if you helped raise awareness of people living with special needs around the world by joining Special Saturday.

Join us on Facebook http://www.facebook.com/?ref=home#!/SpecialSaturday and share our page on to your wall and other pages you follow.

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Doing the Chicken Dance With Mom

Laughing in Van

Here is the awesome TV coverage and yes Cece was a perfect Shining Star!!

http://kaaltv.com/article/stories/S2445621.shtml?cat=10151

Please comment and share with others!!

Cece loves her baby dolls so when she walks she will push one of her dolls in a wheelchair in front of her. The route they took was the normal route which means that they know many of the people from previous walks because they will talk to people if they are outside. At about 3:40 they noticed her hand would not stay on the handle and when they were asking her if she was ok she was not responding normally. Once they realized she was having a complex partial seizure they took her out of the wheelchair and placed her on the PCA’s lap who was by now sitting on the ground.

By 3:46 her seizure had progressed from a complex partial into a grand mal. The man whose yard they were sitting in was in the garage so they asked if they could bring Cece into his house and he said yes. Since Cece has a history of seizures we always carry her rescue medication called Diastat with us wherever we go just in case.  Once they administered the Diastat at 3:49 they called 911 to make sure the ambulance was there if the medicine did not stop the seizure.  The police arrived first and the ambulance arrived shortly thereafter and the seizure finally stopped at 4:00.

My wife decided to take Cece to urgent care to have her checked out but since they were on a walk the van was at home.  The female police officer was kind enough to take my wife home but she had to ride in the back seat of the police car.  She said she felt like a criminal back there and the police officer had to open the door for her when they arrived at our house.  My wife and son then had to take the van down the road to pick up Cece, the PCA and two wheelchairs to get her checked out at the hospital.  Since she has a history of seizures they will not assess her in urgent care so they ended up in the emergency room.  After the Dr. looked Cece over she was diagnosed with her third ear infection in three weeks (each ear infection was diagnosed by a different emergency room Dr. after she had a grand mal seizure).  They gave her a shot of antibiotics and prescribed three days of oral antibiotics and numbing drops for her ears.  We also received a referral for an ENT who we will be seeing on January 23rd to discuss tubes.  She had tubes in the past but they have since fallen out and we did not have more put in because she did not have any ear infections until recently.

We also have an 8:30 neurology appointment on Monday at Mayo Clinic to discuss putting her back on Depakote (Seizure medicine) which she has been off of since before her foot surgery she had in October.  The Dr. is suggesting this as she says it should increase her seizure threshold which would hopefully mean she would not have a grand mal if she gets an ear infection.  We really do not want her to be on more medicine but we also do not want her to have any more grand mal seizures.  This is one of the fun decisions that parents get to make regarding their children.  We are thankful that God is in control and the seizure happened in the yard of the man who helped Cece.  Please pray that we will be able to make the right decision for Cece.

Our family tries to eat supper together at the dining room table when we can but since our daughter Cece had foot surgery in October we haven’t been very successful.  Part of it is because she has been more comfortable sitting on the couch and part of it is because some days we are to tired to force her to sit at the table if she starts throwing a fit.  Last night my wife had fixed a great supper for us so we were determined to eat at the table.  When it was time to eat we told Cece that we were going to eat at the table and she immediately points to the couch saying she wanted to eat on the couch.  Since we wanted to eat at the table we said she could play at the table while we ate supper.  She said no to many things but when we suggested Yatzee she smiled and got very excited.

Supper for us involved Cece sitting on my lap, feeding her supper, eating my own supper while we played Yatzee.  Is that the perfect supper? No but we were able to at least eat at the table together without having anyone throwing a fit.  Hopefully in the upcoming days we can continue to eat at the table and eliminate having to play Yatzee.  Maybe tonight we will be watching YouTube videos while we eat or write on paper but in either case we will still be eating at the table.  Is this a win-win situation?  It might not seem like on the surface playing Yatzee and eating supper is a win-win but in our life it is.

When have you had to redirect your child to get the desired outcome from them?