Tuesday, February 23, 2010

Tell it like it is......

I have to say, when it first came out I was less than enthused about seeing this movie.  I couldn't stand Johnnie Knoxville & the whole Jack*$$ movie bit.....but when I found out the Special Olympics had consulted on this film - I finally agreed to watch it.  It is undoubetly one of my top ten!  If you haven't watched it yet, run, don't walk to get it.  Great actors who really show what life is like for people with special needs....  Be sure to stop the player in the sidebar to hear the message.

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Friday, February 19, 2010

"Kick in the Gut...."

By now I am sure you have all heard Sarah Palin's reaction to the Family Guy show.  If not, you can read it Here.... I am not going to post a link, but if you feel so inclined, you can go to the Fox website and watch the entire episode online.   Now read the response by the woman who played the character Here and Here.- and the full email response Here

For those who are confused by my joy at her interview, let me say this - the episode of the Family Guy was, IMHO both rude, and empowering at the same time. The Stewie song was a little much, but way to go for potraying a person with DS who went out on a regular date, etc! In fact, I am almost more offended on how the brother is portrayed than the girl with DS....almost.

We lament the fact that people with disabilites are far too often portrayed as either the butt of a joke, or a tragic existance, or like a pet needing somebody else to care for and make decisions about....then when the opoortunity arrises where somebody with a disability it portrayed as somebody who can think for themselves, go out on dates with "typical" people, hell, even poke fun at others.....we swoop in convinced that the message was one of discrimination and that the people involved HAD to not have known what they were getting in to.....that they were somehow manipulated into taking such a stand!That they are incapable of thinking for themselves.

For the most part, the jabs that Palin is up in arms over were NOT about DS, they were NOT about Trig -  they were about Palin - Not TRIG - Sarah! Would it have been different if the actor/character involved did not have Down syndrome?  Probably. This would have never made a blip on the screen if it was a "typical" actress saying that her mother was Gov. of Alaska.  PALIN twisted it in to something else - then used it as an opportunity to speak for a group of people who she apparently deems too precious to stand up for themselves - therin lies the problem...

People with disabilities don't need people to speak FOR them - they need people to listen TO them when they speak!  Big difference, and one that is fluid and individual.  While some people with disabilites will probably always need advocates, they also need to learn to BE an advocate.  They need empowerment and the opportunity to advocate for themselves - they need enough respect to allow thier message to be heard, and the opportunity to present it - in short, they need to be treated as people first.  People with different likes and dislikes, abilites, hobbies, religions, races, and politial party affiliations.  People who are CAPABLE of letting you know their needs, wishes, hopes, and dreams - if only YOU have the courage to listen.

Sarah Palin decided that she would put herself out there as a "Disability Advocate", yet when given ample opportunity to stand up for people with Disabilities - she falls flat on her face.....Boy, she comes out swinging when she hears that somebody in the opposite political party has used the "R" word, but let somebody in her OWN party do it - one who has a National Radio Audience - and it is satire - a joke.  If you are going to be an advocate - you are either going to BE one or not.  The "R" word is no less offensive coming from my enenmy as it is from a family member!!!  Do you think that Trig is going to go to school one day and check voter registration cards before he decides if he is going to be upset at being called the "R" word?  Doubt it. Do you think he is going to appreciate being trotted out as the issue of the day every time Palin wants to attack somebody and can't figure out anything else to do it over?  Doubt it.

That whole situation typifies the attitude that Americans have towards people with disabilites, "Oh, I didn't mean it like THAT....Oh, it was a joke!"  Guess what?  I don't care how much money you make, what your job is, who your family is if you use the "R" word - you will get schooled!  Some more politely than others, but make no mistake, it will happen. 

Guess what else?  When/IF Lil Man gets to the point where he can do it himeself - HE will do it! 

A big part of our jobs as parents is to prepare our children to go out and be able to take care of themselves in the big, bad world.  Whether that be typic or special needs, the goal is still the same.  The journey may be just be different.  We do them no favors by allowing them to use their disability as an excuse for not doing all they are capable of....for example: just because Lil Man has had a rough time of it so far, doesn't mean he gets free rein to act like a spoiled brat....If he can throw his toys down the hallway, there is no reason he can't throw them in the toybox at the end of the day.  Just because he held still during an x-ray, doesn't mean that he should expect a gift for doing so.  If somebody or something is hurting him, doesn't mean he needs to lay there and take it until we figure it out.

Sure there are going to be disappointments, hurt feelings, chances lost - but those are all things that typical children need to experience as well.  I am not saying NEVER protect your child, just don't enable them to be dependent on you or somebody else for any more than they need to.  If we put our special needs children in a bubble - never allow them to get hurt feelings, never allow them to speak for themselves, never teach them to take care of themselves to the best of their abilites - then we are handicapping them come than whatever disability it is that they have.  They will NEVER figure out how to speak for themselves.  They will NEVER appreciate being happy if nothing bad ever happens!  And we, as parents, will NEVER get to appreciate the wonderful people our children have the potential of being.  We will never get to beam with pride that first time our child can speak up for themselves and remind somebody to speak TO them, not over them...

As for us, we have a long way to go to get there.  I am not fully sure where "There" is or if we are capable of doing it.  All I know is that I will do everything in my power to give Lil Man the opportunities he needs to grow - it is up to him after that......



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Thursday, February 18, 2010

Please Vote! :)

Please go and vote for the Down syndrome Awareness design for NASCAR!  Thanks!
You can only vote once per day..........Click HERE




Sunday, February 14, 2010

Thinking of you today......

Three years ago, our family went through that dreaded transition from Early Intervention to Early Childhood/Pre-K that many families of childrens with special needs have to endure.  This is your initiation into the world of IEP's, FAPE, No Child Left Behind, inclusion, and the difference between "appropriate" and "best"......Terrified yet?   

We had absolutlely SUPER EI therapists, some of which we are friends with to this day (love ya Amy!).  Honestly, we were spoiled by good people before we made it to the school system.  I grew up in this school district, as did my parents.  One thing that happens is that people remember you as a 15 year old angel as opposed to the Mom of a special needs child.  We had a lot to overcome. :)  

One thing was that on paper, Lil Man is a lot more scary than he is in person.  That was an issue, as was the fact that it took people a while to understand that he was capable of a lot more than what he tested as.  They just don't take Mom's word for it.  wink.....wink. 

Well once we got our IEP straightened out, they sent out the teacher to our house - 1 to 3 times a week.  That was when we met her.......I knew the minute she walked in that I was we were going to love her.  She took one look at Lil Man and said, "What's this?!?   I am going to have to go back and re-do all of my goals and lesson plans!"

Her name was Ms. Bobbett, Cynthia.  She was born on Valentines Day in 1953, on the south side of Chicago.  Her Dad died at the age of 31 leaving his wife and TEN kids to carry on...yes, I said ten.  The next year, Ms. Bobbett's Grandmother died and her Mom took in her four brothers and sisters.  So, by the age of 32, her Mom was raising 14 children in the projects on the south side of Chicago!!!!!  Ms. Bobbett once told me that her Mom required three things of the family.....the ONLY things they were to concentrate on were God, the family, and their educations....in that order.  Most of the 14 graduated college.   

At 17, Ms. Bobbett traveled to Liberia, Africa with Sargent Shriver.  That was the beginnings of both the Peace Corps and Head Start!  They made the cover of magazines - Jet (?) I think.  While in Africa, Ms. Bobbett contracted TB (tuberculosis) and ended up spending the next two years in a TB sanitorium and losing a lung to the disease.  She didn't dwell on it, but did tell me once that she always made a big deal of holidays because she only got to see her Mom through glass for two Christmases. 

She started her career on the south side (58th  & Cottage Grove for the locals) of Chicago at the first Jewish private school, respite, therapy, & social facility for for Special Needs children and their families.  It sounded neat.  They provided schools and therapy, but also social events (think Boys & Girls Club) and 24 hr. respite care. We always got a chuckle about the fact that she was the only African American ,unapologetically Christian, teacher in a rich Jewish school on the south side of Chicago during some of the most turbulent times in history! She didn't talk about that school a lot, but I have a feeling there was never a dull moment there.  Unfortunately, it is no longer there. :(  Eventually, she made her way here and we are so thankful that she did. 

There are lots of great school teachers, and I firmly believe that they don't get paid what they should.  I think many times they are stuck in the middle between parents and the districts and it leads to conflict and burn-out.  I believe that anybody who knew Ms. Bobbett would tell you that she set the bar high when it came to "her kids."

While all of this was going on, we were in negotiations with the district.  It came down to most of their parents don't know or can't educate themselves on the ins and outs of Special Ed.  They didn't know what to do with a parent who knew the rules and called them out when they didn't do something right.  I think they were also afraid that I would pass on my knowledge to other special needs parents, and THEY would start asking for things that the disctrict should be doing all along.

We had many discussions about doing right, and expectations when it came to Lil Man - for his education, behaviour, etc.  She reinforced what I had been thinking all along.  She really encouraged me to homeschool Lil Man.  The plan was that I was going to pull him out to homeschool him when he reached the "regular" Kindergarten level (she was Pre-K).  It also helped to have somebody else in here that Lil Man had to learn to take direction from.  And if you knew Ms. Bobbett, it was best to take direction.  LOL!    We both firmly believed that special needs or not, if you can figure out that throwing a fit will get you something, you can learn the meaning of "No!"  (Mean Mommy)

So on May 22, 2008, Ms. Bobbett was here for the last day of the regular school year.  We were to have a little break and then do summer school.  Lil Man was doing really well that day.  I think he knew that she didn't feel well.  She seemed a little off, but she said she just had a little headache and thought she was getting an ear infection.  She said that her throat "itched" - like an allergy attack.  Before she left that day, she said she was looking forward to the break. She was just tired.  I convinced her to let me take her blood pressure before she left.  She had high blood pressure and was doing well at getting it down and keeping it under control.  I remember taking her BP three times that day because it was almost low!  She laughed about that and said she was going to get some fried chicken if it was that low.  LOL!   

She sang the "rainbow song" that is on the playlist with Lil Man.  They always started and ended with that song.  She got ready to leave and was talking about going to an award ceremony for her Grandson.  Then she gave both Lil Man and myself a HUGE hug.  We always gave hugs, but this was different....fierce.  She was going out the door and turned to say, "I just love you guys.  I am so thankful that we met.  I love you!  See you in a week!." and she was gone.

She was supposed to call me the next day(Friday) by lunch time (early dismissal for summer break) to let me know the schedule for summer school.  She didn't call - which was weird.  I called her room and got the answering machine.  I called later and got the secretary, I think, who acted really weird.  Finally on Saturday, one of our school therapists called me to find out if I had heard anything.  Ummmm, about what?

She broke down and told me that Ms. Bobbett had a stroke on the way home  - we think from our house.  She was in the hospital.  She passed away the next day, with her kids and family by her side. 

That summer was rough on Lil Man, and us.  But we knew what had happened.  How do you explain that to him?  He was REALLY depressed.  To this day, we cannot say "Let's do school (work)" because he looks for her to come through the door.    sigh.....

So today, we celebrate our friendship.  We miss you friend....our two hour phone conversations, our "conferences", bouncing ideas off of you, hearing about your kids, grandkids, and "the sisters".  Your signature exclaimations of  "Go Jesus!", laughing about doing yoga & diets.  We know you are in a better place, and we will all be together again someday.

For those who knew her, take some time out today to get a red balloon.  We all knew that was her favorite color and that she LOVED balloons.  Send one off to her today with love.


Steph, Big Chris, and Lil Man


Wednesday, February 10, 2010

We "Heart" You!!!!

For those who do not know, February is National Heart Health Month. The week of February 7 through 14 is Congenital Heart Defect Awareness Week. This is something close to our hearts - pun intended. 

For those who have joined us recently, Lil Man was born with a congenital heart defect called Complete Atrioventricular Canal Defect.  There are many variations of this defect.  Some will have a hole in between the two Atrium of the heart (ASD) or between the Ventricals (VSD), or some combination.  True to form, Lil Man had his own variation. 

In the picture below, you will see a normal heart on the left and a type of AV Canal on the right.  In his case, Lil Man was also missing the rest of the septum between the ventricals in the picture (the wall between the chambers), he only had half of one valve, and only two lobes (as opposed to three) on both his Pulmonary and Aortic valves.  His heart was also lopsided.  It formed more on one side than it did on the other.  He was 1mm from being considered having Hypoplastic Left Heart Syndrome (See the second picutre). 

Modern medicine is absolutely amazing.  We had two outstanding Cardiac surgeons, Dr. Randal Fortuna and Dr. Geiss, who rebuilt Lil Man's heart.  They created the Mitral and Tricuspid Valves, and a 4 chambered heart.  All of this on a heart the not much bigger than a grape, sewing on tissue the consistency of wet tissue paper.  His first open heart surgery was almost 14 hours.  I have no idea how they do that everyday, but we are sure thankful that they do!  

**Click on the titles above the pictures below, and it will take you to the American Heart page to explain more.**

Complete AV Canal Defect:

Hypoplastic Left Heart Syndrome:

When Lil Man was born, we had no idea what was in store for us.  We had no diagnosis of anything before he was born.  I want to say a few words to those who may have just found out that your child has a heart defect, Down syndrome, or any other diagnosis.  You have every right to feel terrified right now.  You have a right to grieve the child that you thought you were going to have.  BUT you also have a responsiblity to your child.  The minute they were conceived, you agreed (whether you knew it or not), to do what is in the best interest of your child.  That means worrying, grieving, and EDUCATING yourself.  Right now, you are worried about what the future may hold for your child - all parents do, but yours is more intense.  That paralyzing fear of the the unknown can rob you of enjoying the rest of your pregnancy or the birth of your baby.  Remember, they are a baby first.

The absolute best thing you can do for your baby is to find out everything you can about their diagnosis.  Ask questions, write them down.  Get over being afraid and intimidated by doctors.  They are people just like you.  Many times, being an educated parent earns you more brownie points with the docs.  They treat you as part of the decision making team, as opposed to somebody they have to report to.  That is as it should be. Much of the fear you are experiencing is of the unknown.  As soon as you educate yourself, many times you will find things a little less so.  This will also allow you to be able to make better decisions for your child when you need to.

Moving on....since I am a homeschool Mom and the geeky Aunt who always gives the educational gifts (My nephew is terrified to come over ever since I informed him that I found a website where I can print off 15,000 worksheets on different subjects!  He is convinced I will make him do every one!  LOL!), I have included links to several heart organizations, heart facts, and lesson plan links.  There are some neat ones with video lessons , coloring pages, & more.  I tried to include all ages, but some things are a little over the heads of children 1 grade and younger.  Enjoy!

*Every year, an estimated 40,000 babies in the United States are born with some form of congenital heart defect.

*More than 1 million children and adults in the United States are living with a congenital heart defect and/or childhood onset heart disease.  This number is expected to increase by 5% per year due to better diagnostic techniques.

*Congentical Heart Defects are the most frequent birth defect, and unfortunately, also the leading cause of birth-defect related deaths.

*Depending on what studies you look at, between 40 and 60 % of children with Down syndrome have some sort of congentical heart defect.

Lesson Plans & Links:

American Heart Association

The Congential Heart Information Network

The Organization for Understanding Children's Hearts - T.O.U.C.H - this is the local heart group for people who have had OHS or treatment in the Peoria, IL area.

Animated map of the human heart.  This site also has links to open heart surgery.

Elementary Lesson plans on the Circulatory System

Functions and Structure of the Cardiovascular System - Lesson Plans for Grades 5 - 7

Lesson Plans, Link, and Resources on the Cardiovascular System

Free Anatomy and Physiology Videos, Lectures, and Classes

Second Grade Curriculum Resources

Kidinfo - Your Guide to the Human Body

Free Cardiovascular Unit Study and Notebooking Pages - A Montossori type Unit Study

American Heart Association Lesson Ideas and Activites

Thanks for stopping by.  Please leave us a comment.



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Monday, February 8, 2010

Liane Kupferberg Carter: The R Word

Saturday, February 6, 2010

Couldn't Have Said it Better...or Nicer

Thank you Mr. Johnson!



Thursday, February 4, 2010

Heart Buddies

If you were not aware of it before now, February is American Heart Month.  I will do another post on that later.  Right now, I am again asking for prayers for some of our heart buddies:

Zip, Zip, Hooray!

Zippy is doing great today!  He has a little junk in his chest that will require some coughing to get it up, but hopefully he can get some good drugs to help with the pain.  Otherwise, he is really doing outstanding after OHS.

Princess Kaitlyn:

They don't have a blog, but we have met IRL (in real life).  These are some local friends.  Big Chris has known the family since Kaitlyn was born and had her first OHS in Peoria.  Lil Man shares his Cardiologist with her.  They are a super nice family.  Kaitlyn is not too far out from  a heart transplant.  Tonight, she is back in the hospital in Chicago.  She has pneumonia and RSV.  Yes, she is a little old for RSV, but she has it just the same.  Because of the anti-rejection meds, he immune system is very low.  This is how she got the sickies.  Please pray for a quick recovery and no rejection.  Thanks!

Sweet Jaxson:

So far, Jaxson is holding his own.  Resting his tired little body, and letting the meds know out the nasties.  Continued prayers for a quick recovery and strength for his Mommy, Daddy, and brothers. 

Thanks so much for stopping by.  Will get back to regular posting topics ASAP!  :)



Wednesday, February 3, 2010

Prayers Please....

For our two warrior buddies.....Zippy is getting his heart repaired today, and Jaxson is fighting a nasty bug...... please click on their names underneath the photos to go to their blogs.

Love, prayers, & hugs to all!


Tuesday, February 2, 2010

Semper Gumby......

Well, things didn't turn out quite like we thought yesterday.  It was a long day, to be sure.....just not the one we had planned.

We took off, nearly on time, yesterday.  We were a little past Bloomington (about 1 1/2 hours) , when they called us to cancel and rechedule our appointment.  So, we go to Wisconsin on the 22nd now.  :(  Meanwhile, we had to figure out where to do a U - ey on the highway, and head back home.  We were back home by 8 a.m. and decided to catch up on some sleep. 

A couple of hours later, we were up and around.....well, most of us were.  Big Chris, apparently did something to his back somewhere along the way.  So, we packed up Lil Man and dropped him at Gamma & Papa's, & headed back to Champaign to take Big Chris to the E.R.    That was the fastest E.R. visit in history!  We were in an out including a shot of torridol, paperwork, etc within 30 mins!  Wish they could all be that easy.

We dropped off Big Chris' script at the pharmacy and had some time to kill before it was ready.  We never get to Champaign by ourselves and had decided that we were going to head over to Barnes and Noble for a little retail therapy....we never made it.  We decided to stop at La Z Boy and look at some furniture - get some ideas for the new house.      An hour and a half later, we had a couch and two chairs on lay away!  LOL!    Big Chris decided it was all a plan.  I waited until he was flying high on pain meds to take him furniture shopping.  He!He!  Not really, but it worked!

In other news:

Tomorrow is a BIG day for our friend Zippy and his family!  It is Zippy's heart day!  If you would, please say some prayers for Zippy, his family, the doctors, and LC & Aunty Whit (no button action LC!).

Click Here to visit Pudge & Zippy's blog!

If you could take some time to say some prayers for our buddy Jaxson and his family, we would appreciate that as well.  Jaxson's lungs are sick right now and it looks like it may be a long visit.  Please pray for healing for Jaxson and wisdom for the doctors, and strength for Jaxson's Mom, Dad, and brothers.

Click Here to go visit Jaxson.