Sunday, October 28, 2012

Ann Coulter Speech Cancelled After "Retard" Tweets

I think Perez Hilton's headline says it best, "Ann Coulter Speech Cancelled After 'Retard' Remark And The World Is A Better Place." 

Photo from here.

As reported on a protest by students at the University of Ottawa led organizers to cancel a Tuesday night speech Ann Coulter was supposed to give. 

Conservatist political activist Ezra Levan said it would have been "physically dangerous for Ann Coulter to proceed with this event." He then went on to say it was an embarrassing day for the University of Ottawa and their student body who, "chose to silence her through threats and intimidation."

On the other hand, Mike France, a protest organizer and international studies student said he was happy they were able to stop Coulter from speaking, "What Ann Coulter is practicing is not free speech, it's hate speech.  She's targeted the Jews, she's targeted the Muslims, she's targeted Canadians, homosexuals, women, almost everybody you could imagine."

Francois Houle, a university academic vice-president wrote a warning letter to Coulter and said that Canadian laws make provisions for hate speech.  Coulter leaked the letter, which included this line, "Promoting hatred against any identifiable group would not only be considered inappropriate, but could in fact lead to criminal charges."

Piers Morgan Rattles Coulters' Cage

Ann Coulter appeared on Piers Morgan on Friday night and is clearly rattled by his questioning of her use of the word 'retard' in her tweets.  He does an excellent job of trying to force her to explain why the R-word is okay to use, but the N-word is not. What I wish they both would understand is that we don't have "Down syndrome children"-- we have children who happen to have Down syndrome and who have for way too long been labeled as "retards" by individuals who are being purposefully cruel. 

Continue to fight the good fight! We are not the word police, we are just trying to help make the world a better, more accepting place for individuals who happen to have a disability.

If you would like to have your voice heard as well, you can visit and sign a petition to try and get Coulter to apologize. Visit here to sign the petition.

Eye Surgery #2 

On a different note, Super Joe made it through his eye surgery on Friday.  He was looking like a prize fighter after his surgery, but is doing much better today now that most of the swelling has started to go down.  Did the surgery work?  We won't know for a few weeks.  Thank you for all the prayers, thoughts and support.

5:30 am was early to get in the car and drive to the Cleveland Clinic.
Pre- surgery.  Note the blue marker over his left eye for the OR.

If he has to have a 3rd eye surgery we're getting him a shirt that says, "You should see the other guy."

Thursday, October 25, 2012

Joey's Eye Surgery: Take Two

Note the new head tilt.

Tomorrow morning at 5:30 am we will head back up to the Cleveland Clinic.  Joey first had eye surgery on both eyes on July 2nd to help correct the way his head was tilting backwards to accommodate his nystagmus. Since he had open heart surgery last summer we didn't think too much of eye surgery.  What I didn't realize at the time was how much impact and change having the position of both of your eyes moved can have on a little guy. He seemed to be blinking a lot, holding his eyes closed to readjust and often putting his little head down on the floor when he was just too tired to try and focus his eyes.

That was the first 8-10 weeks post-surgery.  The next thing that happened was that his left eye suddenly started to not follow along. He had never had a "wandering" eye before his eye surgery, but suddenly it appeared that when he would look to the left his left eye would just keep going until all we saw was the white of his eyes while his little blue eye ball disappeared somewhere to the left. 

I was in complete and utter denial about the wandering eye. It was an "X" factor that had never been mentioned as a possible side effect. As I seem to forget and then get so rudely reminded of is that parenting is a series of thinking you've got things down only to figure out what you really knew nothing at all and you can never truly be "prepared" for the worst.  I've come to the conclusion that the only thing you can prepare for is to be unprepared.  Make sense?  I'm not sure it does either.

In addition to the new wandering eye, we noticed that he stopped trying to stand up or pull himself up and trying to get him to stand up at a table for any period of time has becoming increasingly harder and harder.  Then he started doing the head down in his hands on the ground thing.  A lot.  Like every day.  At school. 

Then came the head tilt as you can see in the photo above and the one below:
And again, note the new head tilt.

This is a new head tilt.  One we had not seen before. Again, like the wandering eye (my husband noticed, I turned a blind eye...) I was in total denial about the head tilt until the doctor asked us a few appointments ago if he always tilted his head like that.  Like what?  Oh, like that.  Like to the side so he can accommodate his new wandering eye.  Ummm.  Nope.  He hadn't done that one before.

We were sent home with about 100 eye patches and told that we needed to get him to wear it for an hour a day, which worked until 1) the mini cupcakes ran out that I used to bribe him with while he had his eye patch on and 2) he learned how to rip his eye patch off quicker than it took for me to turn around.

Unfortunately, the eye patching is necessary because when someone has a wandering eye, THEY CAN LOSE VISION IN IT.  Huh?????  What?????  Seriously????  So we go back and forth and he wears his patch for about 1 or 2 minutes and then rips it off the minute I try to wash a dish off or answer the phone.  Oh, Super Joe.  Hopefully no more eye patches.

So tomorrow morning we go in bright and early and he will have surgery on his left eye only this time. If you think of it, please say a little prayer that everything goes smoothly so he can get back to preschool on Tuesday and be in the Halloween parade at school.  Speaking of school, Joey barely looks at me once I take him to his classroom, but now when I pick him up 2 1/2 hours later he has started bawling when it is time to leave school.  This is from a boy who barely every cries. I am taking that as a positive sign that he enjoys our time apart and I'm trying not to take it too personally.  

In other areas he has had a pretty major month.  He has started using a spoon (and kind of a fork- still working on that one) pretty well.

He usually alternates one bite with his spoon and one bite with his hands and such meals usually involve an entire outfit change, but it's worth it.  He loves applesauce, yogurt, cottage cheese and his blended fruit and veggie mixtures I buy in those cool pouches from Target.

Almost two weeks ago we took him in for his third modified barium swallow study and we were told that not only does he no longer need to be on honey thickener, but that he "has the swallowing skills of a typically developing two-year-old."  Never have I been more excited about being considered "typical"!!!!

The results of this swallow study were so drastically different from our prior swallow studies that I burst into tears when I heard the news.  They said that their clinic almost never prescribes the honey thickened level to any child and that he should have had a follow up swallow study done much sooner.  That being said, we have decided to step down gradually and he is now using the nectar consistency and hopefully after the eye surgery we will try to go down to nothing at all.

One wonderful trick I learned from a friend is Kefir, which is packed full of probiotics and which is thicker than regular milk.  It is now one of Joey's new favorite beverages.

Hello Sasha Rose, Miss Maureen and Miss Kelly!!
Finally, on Monday Joey had his CBC levels, thyroid levels and lead levels all tested.  He's been having some weird infections (in the folds of his ears and on his toes) as well as petechiae on his trunk in the front and in the back. In the world of down syndrome where the risks of childhood cancer run 20-40% higher than the regular population, infections plus petechiae can set off warning signs.  What we have finally concluded is that when we are really worried we ask for a blood test.  As simple as that.  By late yesterday afternoon we learned his thyroid levels were back to normal as were his CBC counts.  Whew!!!!  Go Super Joe!!!!  Just for that news alone we feel so blessed!

Speaking of cancer, did anyone watch Katie today?  With Ronan's parents? Were you in a sobbing heap after watching it?  I was. Have you ever seen a boy with such beautiful eyes as his?  He passed away on May 9, 2011 because of Neuroblastoma cancer. You can visit here to learn about his story. You can go here to buy the song Taylor Swift wrote about his life.  Donations from the purchase of the song go to the Ronan Thompson Foundation.  Hugs your babies a little closer this weekend.

We are hopeful that tomorrow's procedure is super successful and that it is the last time he has to go through this eye stuff.  In the meantime I have tried to take a video the night before any procedure so we always have something to compare him pre-surgery and post-surgery with.  Please note-- there would be more video of Tommy, but I could not convince him to put on any clothes.  Our new bath time/ night time routine involves me blowing bubbles into the tub, then them getting out and having a dance party until I can wrestle them each into pjs.  Good times!

Video One:

Video Two:

Have you told your kids today that you love them to the moon and back?  I hope so.

Tuesday, October 23, 2012

Mean Girl - Ann Coulter and Her Obsession With Using the R-Word

One of the things that angers me the most about the use of the R-Word is that people with disabilities know what it means and the word gets bandied about as if they do not.  

I read about Ms. Coulter's use of the word last week in a tweet about a video the president made for the National Forum on Disability Issues: "Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election." 

Ann Coulter

It pains me to feed the beast (ie: her ego) and discuss her a public forum and I chose to ignore her first comment because living in Ohio means we are saturated from sun up to sun down with television ads, mailers, phone calls and people ringing our door bell to persuade us who to vote for in the presidential election this year.  The last thing I wanted to do was to provide another forum for Ms. Coulter to gain any additional attention.

Then she tweeted this following the presidential debate last night, "I highly approve of Romney's decision to be kind and gentle to the retard." 

The more I think about it, perhaps we should actually be thanking Ms. Coulter for bringing the horrible use of the R-word to light for more people to discuss and understand.  Actually, yes-- I do thank her for that.  I thank her for showing what bullies sound like.

I thank her for opening up a national discussion on a topic that is so very near and dear to me so that I can somehow try to help encourage the world to be a more accepting, educated and aware place for individuals with disabilities (not just Down syndrome like Joey, but all disabilities) to live in. 

In 2010 Congress banned the use of the words "retard" and "retardation" in federal health, education and labor laws and now favors using the term "intellectual disability."  By 2013 the American Psychiatric Association will also replace "mental retardation" with "intellectual development disorder" in the 5th version of The Diagnostic and Statistical Manual of Mental Disorders. 

Ms. Coulter-- having a son who has an intellectual disability means that not only do we have to help show the world everything he CAN do, but it also means proving to the world that outdated slurs that paint an incredibly wide brush of misconception are not accurate.  Our son has had open heart surgery, eye surgery, ear surgery and is preparing for another eye surgery on Friday, the last thing in this world that he needs to battle is ignorance and hatred from people who have a public pedestal.  To be completely honest, we have enough on our plates as does Joey and having to continually fight to change ignorance is a battle we wish we had more time for.  For Joey, everything he does take extra hard work, effort, devotion, struggle, and heart.  From learning sign language to learning to sit up to learning to crawl and to someday learning to talk and walk, he has to pour every single ounce of himself into it and we try to do the same. The pride we feel as parents is beyond any love that I ever imagined possible. I wonder what Ms. Coulter's parents think about her approach to the world right now?

As Ellen Seidman writes on her blog Love That Max:

Most people would never call a kid with cognitive disabilities a "retard" to his face (and if you are a person who would do that, step away from this blog and go search for your soul). If you wouldn't say the word to my child because you know it's offensive, you should avoid using it elsewhere, too. Either way, it's demeaning.Either way, it hurts my child.

As disgusting and hateful as Ms. Coulter's remarks are, I am in awe with the response that others in the entertainment industry are tweeting and as Joey's parent and as an advocate, I thank them each for using their voice for good and not evil-- as reported on E Online:

"@AnnCoulter You disgust me," tweetedSophia Bush. "That man is the president of this country. (& I'm sure all of the disabled children in America appreciate you.)"
Comedian Patton Oswalt also responded,posting, "Ann Coulter died of prostate cancer in 2002. Her Twitter account's a sentient emu skeleton with a swatch of eyelid skin stretched over it." He later added: "If Ann Coulter's calling the President a 'retard' it means he won/is going to win. She's our un-pettable Punxsutawney Phil."
Holly Robinson Peete also spoke up, writing: "As a mom of a son with autism the words Retard or retarded are like nails on a chalkboard. A lot of people say it benignly esp kids...So when a grown woman deliberately uses it publicly over and over you just have to wonder if there is a chip missing ya know?"
Singer Michelle Branch tweeted as well, saying, "I don't care who you are. The "R" word is so absolutely disgusting," and Oscar winner Marlee Matlin noted, "Despite our differences, it's NOT ok to use the "R" word. Consider millions of developmentally challenged Americans. It's just UNBELIEVABLE."
Glee star Lauren Potter, who, like her character on the hit FOX show, also has Down Syndrome, tweeted, "Thank you to everyone who has taken a stand against the R word tonight!"

What I think is most powerful and is the best response to Ms. Coulter's hateful comments is what Special Olympics athlete and global messenger John Franklin Stephens wrote in response to the tweets on the Special Olympics site:

John Franklin Stephens
The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night's Presidential debate.
Dear Ann Coulter,
Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?
I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.
I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.
Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.  
Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.  
Because, Ms. Coulter, that is who we are – and much, much more.  
After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me.  You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.
I have to wonder if you considered other hateful words but recoiled from the backlash.  
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.  
No one overcomes more than we do and still loves life so much.  
Come join us someday at Special Olympics.  See if you can walk away with your heart unchanged.
A friend you haven’t made yet,   John Franklin Stephens
Global Messenger
Special Olympics Virginia   
EDITOR'S NOTE: John has previously written powerful opinion pieces on the R-word. Read one here.
With individuals like John Franklin Stephens, Tim Shriver and other advocates such as Max's mom, I know that we will change the how the world thinks and I know that we can make it a more accepting and better place to live in not only for Joey, but for you and I.

Have you stood up for anyone lately?  

Tuesday, October 2, 2012

Eye Patching, Preschool Adventures and Running Out of Insurance Coverage

October is Down Syndrome Awareness Month! It is also National Physical Therapy Month as well as National Breast Cancer Awareness Month

We will celebrate by trying to do what is always our goal-- spread awareness, encourage acceptance and help create opportunities.

Eye Surgery- Part 2

It is probably time for a few updates.  Super Joe's first eye surgery was July 2nd and the surgery seems to have greatly corrected his extreme head tilt back, which was the goal of the procedure in which two eye muscles on each eye were cut and re-attached to a new spot.  Since then we have had some unexpected side effects due to the surgery.  Namely, Joey now no longer tilts his head back, but now tilts it to the right to try and overcome the extreme wandering/lazy eye that was a result of the first surgery.  His little left eye just keeps rolling waaaaaayyyyyyy over to the left and somewhere into the his head.  His right eye is doing great, but his left eye did not recover as we had hoped.

It is really hard for me to watch.  Mostly because this was never an issue before. That being said, his very kind and skilled eye surgeon told us last week, "Look, this is my fault.  The surgery caused his eye to wander and now we are going to try to fix it."  This is not any kind of malpractice or litigious issue, instead it is just a risk of eye surgery.  Apparently it is not uncommon to have to go back in once, twice or even a few times.  

My husband was the first to notice that they eye had started to seem to wander.  Then we noticed that Joey stopped pulling himself up.  The next thing that happened is that he started just putting his head down in the middle of the floor and putting his head in his hands.  This happens anywhere from 10-15 times a day for varying amounts of time. His teachers at school also noticed and were concerned that maybe he was tired.  

What we have learned is that he is working so hard to try and control that left eye, that his mobility has been affected and it is causing him some pretty severe discomfort.  Thus, to give himself a break and re-group, he just puts his little head down.

His next eye surgery is scheduled for Friday, October 26th and in the meantime we are supposed to patch his "good" eye every day for an hour.  The first few days I cried because I just felt so mean, but gradually we are getting the hang of things.  He lasted for only 15 minutes the first day, 45 minutes the next and we are finally up to an hour.  He is such a tolerant little man. God bless him for his patience and sweet disposition.

Tommy said he wanted to be like Joey.

Simply Thick

Next week we are going in for a 3rd Modified Barium Swallow Study (visit here to learn more about swallow studies)to see how Joey is doing with his dysphagia and aspirating on thin liquids.  He has now been on the Honey Consistency of Simply Thick for two years (almost to the date).  A little over a week ago, the FDA issued a new warning about the use of Simply Thick in infants.  There was a warning as well as a recall last year, but up to this point Joey has been very successful using Simply Thick.  This has been a tough call to make.  We do not believe he is in any danger, but it is time to get another swallow study and try to come up with some strategies to eventually get him off of the thickened liquids.  We still pay for Simply Thick out of pocket because of our insurance refuses to cover it, so it costs us approximately $300 per month.  It will be nice to say "ciao!" to the thickener at some point.

Preschool Adventures

If you had told me that when Joey started to attend his two day a week "2's" preschool program that he would immediately make a friend and have the time of his life I might have doubted you.  I should be ashamed. Preschool is where the action is for Super Joe.  He is having the time of his life and he yells and wails on Monday, Wednesday and Friday when we drop off Tommy and he doesn't get to stay.  However on Tuesday and Thursdays, I carry him to his class room, drop him off and away he crawls without a second's hesitation or a backward glance.

His little friend comes immediately up to him and squeezes Joey's cheeks in his hands.  It's amazing.  Then I saw his friend's mom and she told me how her son kept telling her about his friend Joey.  Incredible.

What has also been incredible is his teacher's willingness to go the extra mile to learn about Joey and how to help him adapt to the various activities.  We walked in today and the director of All About Kids signed, "More cheese, please" to me and I almost cried right on the spot.  She said that Joey's teacher has taken the sign language very seriously and has been helping to teach the other teacher's some signs as well. 

The tears are pretty much a guarantee on most days and I told them I promise I will try not to cry every single time I am there, but every single time there is something that is so overwhelmingly amazing to me that I can't help.  

Our amazing coordinator from the county and the Community Partnership for Inclusion met me out at the school last Thursday with one of the wonderful physical therapists and they brought a gait trainer for Joey to use at school to help give him an opportunity to be on the same level of his peers during parts of class.  It was so amazing and as with most of our Joey experiences somewhat overwhelming and emotional.  

Tommy sticks by Joey's side until he has deemed the situation "a-ok".

The Gait Trainer has been awesome.  Look at that smile.  Look at this little love bug standing up to the water table to be with his friends.  What was most amazing is that he actually moved his feet and kind of "walked" a little in it.  I wish I could properly express how much effort and work and time we have put in to try and help Joey learn to walk.  To learn to use his feet.  I massage his legs, feet, arms and hands every single night to try help "wake up" his neurotransmitters and to help provide feedback about his extremities and how to use them.  To see him so motivated that he wants to try and walk to a table is simple incredible.  

From the staff at All About Kids to the team at Help Me Grow and Summit DD-- we are seeing our dreams of Joey learning independence and of him having friends and adventures and it is one of the most overwhelmingly amazing and incredible feelings. To go from being pregnant and not knowing if he would make it and not knowing what it would mean to have a child with Down syndrome to seeing him develop into this spirited little boy is such a journey in such a short time.  

Running Out of Insurance

Well, it finally happened.  With four months left in the year we maxed out on our speech therapy, occupational therapy and physical therapy.  All of them.  All at once.  Oh my.

What do you do?  Well, we are appealing it to our insurance company.  We are trying to seek additional coverage under the Affordable Care Act with the argument that since necessary treatments cannot be limited under the ACA, Joey's therapies cannot be limited to the number of treatments the insurance company has deemed for him.  

While the good fight goes, we pay.  We pay and we pay and we pay.  And it is worth it.  We have an AWESOME team of therapists and they are worth it.  Until we hit January 1st we pay approximately $1200 per month out of pocket for his private therapy.  Gulp.  I honestly wonder how many families do it.  How do the working moms do it?  I quit my job just so I could take Joey to all of his appointments and therapies. How do families make it when they have medical costs that are equal to a second mortgage?

We are also applying for some funds at the hospital.  We do not meet the requirements for financial assistance or for BCMH, but there are funds available at some hospitals, so if you are going through this, be sure to call the financial counselor at your hospital or therapy center. 

And in the meantime, I try to "sneak" in therapy anywhere I can.  Wrestling with his brother hits a lot of our PT and OT goals.  We do a lot of our feeding and speech during snacks and meals and we also doing the eye patching during meals.  Bath time also gives us a good opportunity to work on balance and coordination.  It's all about being creative.

Our Little Troublemaker

Maybe it's turning 2 or maybe it's going to school or maybe it is incredible lightening quick army crawling, but whatever it is, Super Joe has kind of become a bit of a sneak....and we LOVE it!

It started the night I was trying to get them ready for their bath and walked in the bathroom to see a pile-- literally a pile of clothes in the toilet. Not his clothes either-- his brother's clothes. Huh? How did this happen?  Joey?  Seriously??? This has lead to needing to keep the toilet lids down at all times and the bathroom doors closed because Joey is obsessed with water and will go to extreme lengths to get the opportunity to play in it.

His other favorite things to do are to take the dirty dishes back out of the dishwasher...

And finally, he loves to take out all the Tupperware and bang it around on the floor just like his older brother used to do.  It is the sound of angels to my ears.

Happy Down Syndrome Awareness Month! 

What have your little ones gone through and survived?  Was it harder on you than on them? Anyone else trying to work around insurance restraints?  Any tips?