Category Archives: Guest Blogs

Let Our Voices Be Heard

Guest Post by Mixed Up Daddy

I beg you to take the few minutes it will take to read this and the few minutes it will take to act. We can make a difference if we stand together.

Quickly, let me apologize to those that come to this blog to get updates on Connor. I swear I, Mixed Up Daddy, am not trying to highjack this blog with political rants, and my wife will get back to writing posts on Connor, but she has graciously allowed me to write one more post about politics, and what I feel should be the most important issue for everyone – being heard in our government process.

Based on my friends who span all parties and political groups, and who disagree on many topics, the topic of “being heard” has bipartisan support. Let me also say that this is not just a topic on Georgia state politics (although I may reference Georgia as an example since that is where I reside), but most states and our federal government.

As we saw in Georgia on Thursday March 20th, the last day of our legislative session, once again our elected politicians chose to ignore the majority of their constituents and either never vote on bills, or defy the overwhelming majority of the public and vote the other way on bills. Rest assured this is happening in every state.

No instead we have politicians like Georgia State Senator Renee Unterman tweeting out 4 hours before the end of the session that others were tearing up paper in preparation for their confetti to celebrate the end of the session. (In Georgia our congressmen and congresswomen feel it is okay to “trash up” their chambers, and celebrate that they have screwed over Georgians once again.) We also have childish games like those played by Georgia Lt. Governor Casey Cagle who refused to bring bills up for votes in the senate because the house wasn’t moving on senate bills. We are being led by a bunch of adults who act like 3-year-old children!

All too often I hear those in the general public say, “This issue is so obvious, why can’t or won’t our government pass it?” I am guilty of it as much as anyone else. Well this is our chance to change things. The time is now for us to tell our elected politicians that we, the 99% that cannot buy politicians, votes, and laws, demand our voices be heard, we demand to be truly represented, and we demand to have our votes counted.

There is no reason in this day and age that we as “the people” are not allowed to vote on certain issues faced by our states and country. Some will say, “What are you talking about, we have free elections and thus get a say in our government?” Do we? Yes we get to elect those who you will represent us, but are they really representing us? There are many issues that we the general public can’t agree on, but there are quite a few that have overwhelming support in the general public, but never seem to get passed by our government (at the state or federal levels). There are some great politicians at state levels and at the federal level, but unfortunately there are far too many more that only represent their donors (the individual donors, corporate donors, and lobbyists). Let’s face hard facts, the more you donate the more you matter. Unfortunately most Americans do not have the ability to donate to campaigns, and thus are ignored by their elected politicians. The politicians will claim this is not true, but the American people are not as stupid as they think.
So how can we solve this problem? This can be solved by letting the people be heard. There are a few states that actually are progressive enough to allow this, but far too many do not, and the federal government does not. What am I referring to? Let the general public vote on certain initiatives and referendums. There is no reason this whole map is not dark blue.

I am not saying that every single initiative and referendum should be voted on by the general public, but there are certainly some that have such widespread support either for or against that they would be able to garner a certain number of signatures on a petition to get added to the ballot.

Of course most politicians would balk at this idea. They will claim that we have a democratic process already. That is partly true. Times have changed though and are changing more and more each day. This isn’t 200 years ago, 100 years ago, or even 50 years ago when we had to elect individuals to represent us because we couldn’t get our messages out. These days we have 24 hour news and can contact anyone, anywhere, at any time via cell phones, emails, etc. Our voices can be heard now. And they should be heard now.

Our politicians have no problem getting involved in the politics of other countries, demanding that they allow the democratic process to prevail, yet they will not allow that full democratic process here in America. Don’t get me wrong, we still have a better process then most countries, but it can be better and more democratic.

Some politicians will state that we can’t allow this because of certain laws, well guess what, you make the laws and can change them, and we are demanding that you do. Remember Mr. or Ms. Politician, you work for us.

So what can be done? I am here to ask for everyone’s help on this. I am begging for your help on this. If you ever get involved in any issue, this is the one I am asking for help on.

Contact your duly elected officials (you can find out who your elected officials are here, ) and demand to get their opinion on this topic and ask them if they will take the lead on this issue. If they say they aren’t for this or won’t take the lead on this, let everyone know, and vote them out.
If they claim they are for it and will take the lead on this issue, let everyone know, and if they don’t hold up to their end of the bargain let everyone know that, and vote them out.

Contact the media and demand that they bring this topic to the forefront of their reporting and keep it there until it is enacted in every state and at the federal level.

If you are not comfortable writing to politicians and the media, write them a simple note saying you want their opinion on this matter and send them to this page and let them know this is an issue you want to know their opinion on (politicians) and want reported on (the media). If your elected official does not get back to you or ignores you (such as my state senator Judson Hill who ignores the dozens of his constituents that I know that have contacted him), keep on them, and let everyone know they are ignoring you, and vote them out.

Demand that they take action on this now, not “some point in the future because we have more pressing issues”. There is no more pressing issue than letting everyone have a voice (vote). If your state is like Georgia and is only in session 40 days a year, and won’t be back until next January, demand a special session. Of course the politicians will say this takes money we don’t have, but they waste money each and every day, and each and every year in their budgets. Nothing is more important than allowing the American people to be heard. What are they afraid of? Don’t tell us you will take it up in the next session (next January) hoping we will forget about it. This will probably be a common reply as this is a big election year, and they hope they can ignore this issue right now, and then have the American people forget about it by the time the next big election rolls around in two year. Take it up now. If they don’t, or don’t vote for it, vote them out. Vote them out this year.

If your state requires that the governor call the special session, demand that they do. If they don’t, vote them out.
Let’s be honest, this special session should not be a long one. If we can get our voices heard, they will know that this is what their constituents are demanding and that this should be passed. If it is not passed, vote them out.

I also know there are a lot of people out there that say they will never vote for a democrat or never vote for republican, but if your elected politician will not get behind this and take the lead on this and vote for this, no matter what political party they are with, vote them out.

The last time I checked this was a nation “by the people, for the people”. We deserve to have a bigger say in our government. As we see each and every day, each side of the isle, at every level is playing games. Well our lives and our country are not a game. Since they will not represent us, it is time we force them to allow us to have more of a say in our lives and our country. Let’s show the world what a real democratic country should be like. And if they won’t allow us to have more of a say, vote them out.

Let’s come together and not allow them to ignore this issue “because it is an elections year” like they do every other year with pieces of hard legislation. This is an issue to be taken up now, otherwise, vote them out.

Please share this will as many people as you can. The only way we can have change is by having our voices be heard. If we, the 99% that can’t buy politicians, votes, and laws, band together we can finally force our politicians to listen to us. Only then will we be able to have a say, and finally get to have votes on the issues that so many of us can agree on, but they will not act on.

Advertisements

Medical Cannabis and Political Games

Guest post by Mixed Up Daddy

For those of you that have wondered, yes there is a Mixed Up Daddy that walks the path of life with Mixed Up Mommy.  Probably more astonishing to some (including my family and close friends), I even can write!  Although let me start by saying I don’t write nearly as well as my wife.

Also, before I get into the true reason of this post, let me just say how proud of my wife I am, not only for writing this blog and educating so many on TSC and our journey through it, but also for being an incredible wife and best friend to me, and of course the best mom ever to Connor (no offense to the other moms out there!).  I also want to thank the little man himself, Connor.  He is such an inspiration to me, and I only wish I could have a little bit of the strength and courage he shows every day.

Now on to the reason for my first foray into blogging — a certain state representative here in Georgia.  As I am sure you are all aware from reading Becky’s blog, there has been a push in 2014 to legalize medical cannabis oil in Georgia — oil that could potentially not only help with the quality of life for so many like Connor, but could potentially be lifesaving.  It goes without saying how wonderful it is to have State Representative Allen Peake of District 141 who was willing to champion this cause for so many on our side.  He did this knowing it was going to be a tough fight and one that could potentially end his political career.  It is refreshing having politicians who, even though they may lose their political career, are still willing to take on the hard issues because it is the right thing to do!  I applaud you sir!!!  I only wish we had more like you at every level of government.

But that isn’t the representative I came to write about.  I also didn’t come to write about my State Senator who, although he is in the state senate to represent myself and the rest of his constituents, never returns emails, voicemails, Twitter messages, stands you up for appointments, and doesn’t even show up for his own scheduled town hall meeting (and let me add this is not just my experience, but dozens of his constituents’ experiences).  Nor am I here to write about how wrong it is that our government (both at the federal and state levels) take off every other year from tackling the hard issues because “it is an election year”.  Again, there are some great politicians out there that don’t do this, but I am sick of hearing this. You are elected to represent us, each year and every year.  I am also not here to tackle the comment made on the floor of the Georgia House of Representatives during the debate on HB885 by a freshman politician that when he took office he was told by other politicians that freshmen congressmen and congresswomen should be seen and not heard.  Since when do those who elected a new member to represent them suddenly not have a voice?  To me this is nothing more than bullying of politicians by other politicians. Thankfully the above referenced representative did not listen to those politicians, but instead gave a great speech and represented those from his district. On a side note, don’t get me started on the all too common practice in politics of “the more you donate, the more you matter and get access.”  Maybe that is how I can get access to my state senator?

Okay, so maybe I got to a few items, just not in the detail I could have.

No, I am here to talk about, and give my opinion — no one else’s — on Georgia State Representative Sharon Cooper of District 43.  I did not know who Sharon Cooper was before this process as I do not live in her district and did not get involved in state politics. But after this process, oh wow!  Now I readily admit I am biased when it comes to the topic of cannabis oil, but my issue with Sharon Cooper isn’t so much on this topic, but the way she has conducted herself during this process, and I can only assume, how she conducts herself in general down at the Gold Dome (the Capital in Georgia is referred to as the Gold Dome).  I also will say that she voted for this bill twice — once in committee and once in the full House vote. But looks can be deceiving.  In my humble opinion she has actually been trying to kill the bill behind the scenes.  I will get to that in a moment.  Some though will say, “Why would she vote for the bill if she didn’t want it passed in reality?” Well that is where I question how she does things.  Based on parents who were in the House during the vote, she was one of the last to vote. Again it is just my opinion, but my guess is that she was seeing how the vote was going, and in “old school politician” mode, chose to vote for it as it isn’t easy to be a “no” vote when the vote is 171-4, but it is easy to hide as a “no” vote if the vote were say 104-71. (I know old school dirty politics, I was born and raised in Chicago, where that was invented).  No, an “old school politician” would vote for it (knowing that is what the public would see), and then behind the “closed doors” of the capitol try to kill the bill (luckily the doors of the capitol of Georgia are not as “closed” as she thinks).  My issue here is that she has a responsibility to her constituents to show them how she truly votes on the issues, not resort to the all too common politics of today of “I will do whatever I need to do to get reelected”.  I have no problem with my elected officials voting contrary to my opinion on issues, as there is no way we would see eye to eye on every issue.  We should not have to ask that they vote accurately though so we can actually make an informed decision during elections.  We deserve that much!

Now you may ask, “How was she trying to kill the bill?”  Behind the scenes at the Gold Dome she was passing out a flyer on the “Truths” (my wording) of HB885, yet there were several facts that were wrong on it.  I am not sure if she just got the facts wrong and didn’t do the research, or if she did this on purpose, but either way that is unconscionable, and although it is common in politics, has no place.  Let’s also not forget that her position on some items is ever changing.  Take Epidiolex (a pharmaceutical cannabis product that is currently going through FDA trials and shows some great promise) for example.  At her committee meeting there was testimony by a woman — a family values advocate, not a doctor  –who said Epidiolex could be here in Georgia in 30 days, yet there was also testimony by a respected neurologist (Connor’s doctor, and many of the other children that could benefit from cannabis oil) who said he was in the process of getting DEA approval to run an Epidiolex trail, but it was a long and arduous process.  So who does she back during the meeting? The non-doctor testimony — never mind the fact that it was a lie.  She would correct that in later speeches and comments though.  She could have also found out more about how it is such a long process by watching the show Weed 2 that recently aired on CNN and was done by Dr. Sanjay Gupta.  Of course this is the same congresswoman who called into question Dr. Gupta’s credibility during her committee meeting.  Never mind Dr. Gupta is a well respected neurosurgeon, assistant professor, and journalist.  She also cut off more than one parent during their testimony, including one that she would later reference in her speech on the House floor regarding medical cannabis, although twisting and misrepresenting his story to fit her ways.

Representative Cooper’s big idea on the subject is that we have an alternative FDA medicine — Epidiolex — at our disposal.  Unfortunately that medicine is not readily available and we have no idea when it will be (most likely years based on other FDA timelines).  Currently it is only in trials, very limited trials (we are talking 125 people, and based on trials that are trying to get up and running, at most maybe 2000 people, but probably less, in the future).  She also has said that Children’s Hospital of Atlanta has told her they are open to do studies on Epidiolex, yet when contacted, CHOA said they have no interest in doing a study on Epidiolex at this time. I have no idea why the parents are getting different information than Representative Cooper, but we certainly aren’t being told what she says she’s hearing (maybe “old school politics” again).  What do these parents and adults do in the meantime?  Also, let me point out that most patients have exhausted all available FDA-approved meds that are out there for their conditions.  Let me also mention that although I am sure there are some incredible people working for the FDA, let’s not forget that the top levels at the FDA are political appointees, and that big pharma is an incredibly powerful lobby and big contributors to political campaigns.  Let’s also not forget the side effects that come with the FDA-approved meds that are taken every day — possible vision damage, kidney failure and liver damage to name just a few.  Or that there have been FDA-approved drugs that have then been recalled.

I am digressing though. There are some incredible parents we have met along this journey that are a lot better at giving examples of her lies, and if they cannot get them published in the Atlanta paper, I am sure my wife will give you a forum to get your message out.  Since the Atlanta paper allowed an editorial by Sharon Cooper though, I certainly hope they give “us” a chance to get the truth out there.  Again, this is about her shady politics, though.  This is what the general public has grown sick of in America.  We expect our politicians to act in a better manner.  I only wish I lived in her district to run against her.  In Georgia though, we are sort of set-up where the common man can’t run.  We only pay our politicians less than $18,000 a year (no, I am in no way advocating for higher pay), so unfortunately unless you are a business owner, or independently wealthy, it is almost impossible to run as you can’t raise a family on that pay.  As great as my company is, and they have been incredible throughout our whole journey with TSC, I am pretty sure they are not going to let me take the first three months of the year off.  And how I would love to run against our state senator so that everyone in our district could be heard and represented.  I deserve to be heard and represented; we all deserve to be heard and represented!

Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.
Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.

Leadership Lessons From a Special Kid (and giveaway)


coverNote from Mixed Up Mommy: I’m pleased to have author Bill Treasurer as a guest blogger today. Proceeds from his latest book will benefit children with special needs. I also get to do a giveaway with five copies of his book! If you would like to receive a free copy, simply leave a comment on the post. I will draw five names on Saturday July 27 and contact the winners, as well as post them here. Check his book out on Amazon.

By guest blogger Bill Treasurer

For the last two decades I have taught leadership development to thousands of executives across the globe. I’ve written books on leadership and courage, and a widely used courageous leadership training program. I even did my graduate school thesis on leadership. Despite all of the wonderful leadership lessons that my clients have provided me, few people have taught me as much about leadership as my nine-year-old daughter Bina.

Bina (rhymes with Tina) has cerebral palsy. She is also profoundly deaf. Both challenges are the byproducts of a virulent staph infection she contracted at the hospital just days after she was born. Americans with disabilities make up the largest minority population in the United States. Some 54 million Americans have a disability of one form or another. And anyone who has been graced by the company of such people knows what a blessing it can be. It can also be heartbreaking. During Bina’s first year, it became clear that she was lagging behind her twin brother, Alex, in significant ways. Alex rolled over. Bina didn’t. Alex crawled. Bina didn’t. Alex responded to our baby talk. Bina didn’t. Alex received adoring smiles from strangers. Bina didn’t.

The first leadership lesson Bina taught me happened early on. At first, all I could focus on was Bina’s disabilities, which caused me a lot of anger. I’d think, “Why did this happen to her? Who caused this?” and “Why can’t she do the things her brother can do?” Then, just before she turned two, a friend of mine wisely suggested that I start focusing on Bina’s abilities, not her disabilities. When I heeded my friend’s advice, Bina started progressing much more rapidly. In some strange way, by focusing on her disabilities I had become a block to Bina’s progress. I had pigeonholed Bina as a “handicapped” person and had started treating her as such, often by babying her. Once I started focusing on her abilities, my parenting shifted from taking “care” of her, to fostering her strengths by encouraging her self-reliance. Leadership lesson #1: People go farther when you focus on what they can do, not what they can’t.

The next leadership lesson came when Bina was four. At that point, Bina was still in a stroller because she couldn’t walk. Her brother Alex, on the other hand, was turning into a rambunctious little Ninja gymnast. To encourage his aerial hijinks we set up a trampoline in our backyard. I’d teach Alex trampoline moves while Bina watched from the sidelines. At the end of our little practice sessions I’d always make time for Bina too, holding her little hands and bouncing up and down.

One day, just to see what would happen, I sat behind Bina, stood her upright, steadied her hips, and let go of her hands. Then Bina did something she never had done before: She took three full steps. On the hard floor, Bina was never confident enough to do this. Kids with cerebral palsy fall down a lot, and Bina was no different. She had fallen off enough chairs to know that the hard floor wasn’t her friend. So watching Bina take three teetering steps was hugely thrilling. On her fourth step she fell to the mat and giggled as my wife, Shannon, and I cheered wildly

Recognizing that we were onto something, Shannon and I began to set aside time each day to walk with Bina on the trampoline. Before long, three steps turned to five steps, and five turned into ten. Then we set up a long runner of matted cushion on our back deck, figuring it would help her make the transition from the spongy trampoline surface to the hardwood floor. Drawing on her trampoline successes, Bina cautiously stepped out on the runner. Soon she was taking more steps on the deck than she was able to on the trampoline. It was all terrifically encouraging and inspiring. By setting up our backyard trampoline, we created a safe way for Bina to do something that she had previously felt was too unsafe to do. Walking, formerly a frightening and potentially injuring experience, now had become fun. Notice that the action we wanted Bina to take (walking) hadn’t changed. What had changed was the consequence (and only temporarily). The spongy trampoline surface was far more forgiving than our hardwood floors. When we surrounded the same action with safer consequences, Bina became much more willing to take a risk. Leadership lesson #2: If you want people to take more risks, make failure safe and success possible.

The third leadership lesson involves communication. Bina has had a cochlear implant since she was two-and-a-half. The technology has been a wonderful blessing in that it has allowed Bina to hear and acquire language. Along with intensive speech therapy, the cochlear implant has made communication with Bina possible. Still, Bina talks differently than most people. Her deafness impacts her intonations and her cerebral palsy affects the use of her tongue and mouth. So communicating with Bina takes a lot more patience and listening. It is not uncommon for her to have to say something a few times before you fully understand what she’s saying.

Few things provoke other people’s judgment than how one communicates. Northerners make judgments about southerners due to dialectic differences in pace (northerners tend to speak faster than southerners). In the same way, it’s common for people to make judgments about the intellect of people with special needs because they often talk differently. This is especially true for people who have cerebral palsy whose faces often contort and shift when they talk. But when you take the time to listen deeply to a person with special needs you get to know their preferences and perspectives. Over time I’ve learned that communication works best when I communicate with Bina on her terms, not mine. This requires adjusting to her cadence, intonation, pace, and unique dialect. Communicating with Bina on her terms has allowed me to discover how wonderful, caring, and beautiful Bina is, and it has deepened our connection to one another. Leadership lesson #3: Effective communication results from patience, listening, and setting aside your own communication preferences.

Being Bina’s dad has been one of the greatest joys, and greatest educations, of my life. I’ve learned powerful lessons about dignity, unconditional love, prejudice, and leadership. You couldn’t pay me all the money in the world to take Bina away from me, though I would give you everything I own for her to not have had to suffer through her challenges. In the end, though, my job is to love Bina as much as I can love her to help her go as far as she can go. To me, that’s the ultimate job of a parent…and a leader.

 

Bill Treasurer is the author of Leaders Open Doors, which focuses on the responsibility that leaders have for creating opportunities that cause people to grow. The book is carrying out its own message: 100% of the royalties are being donated to programs that support children with special needs. Learn more at www.leadersopendoors.com.


Bill is also the author of Courage Goes to Work, an international bestselling book that introduces the concept of courage-building. He is also the author of Courageous Leadership: A Program for Using Courage to Transform the Workplace, an off-the-shelf training toolkit that organizations use to build workplace courage. Bill has led courage-building workshops for, among others, NASA, Accenture, CNN, PNC Bank, SPANX, Hugo Boss, Saks Fifth Avenue, and the US Department of Veterans Affairs. Contact Bill at btreasurer@giantleapconsulting.com, or on Twitter at @btreasurer (#leadsimple).