Special People Parenting Special Kids

Eugenics in today’s society

May 1, 2008 Author: Kyron | Filed under: Advocacy, News, Political

I posted about Trig Paxon Van Palin the other day. He is the beautiful son of the Governor of Alaska and her husband. In their press statement on the birth of this their 5th child, the stated that:

We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.

It was with that thought in mind that I felt compelled to bring this article to your attention. The site, Beaconcast has a provoking article online about eugenics. It’s a word that very much stirs a myriad of emotions. There have been incredibly famous advocates of the philosophy, believing it was altruistic, and yet there are so very many who believed that it was immoral. Certainly it’s use as a justification in Nazi Germany would prove its immorality. Yet it’s not just regimes like Nazi Germany that have used it. US President Woodrow Wilson helped to have Indiana (the first of over 30 states) adopt legislation in the early 1900’s for compulsory sterilization of certain individuals (the mentally ill, mentally retarded). The law was overturned in Indiana in 1921 but there are laws still on the books that are rooted in the philiosophy of eugenics.

The debate should heat up when you consider that disability advocates now state that 92% of fetuses diagnosed with down syndrome are aborted. Is this not eugenics – a “cleansing” of the human race of those considered genetically inferior? I think back to my pregnancy with Katherine.

My pregnancy was considered high risk because of my asthma and regular inability to control it. While I underwent test after test monitoring it’s effect on Katherine I was the willing guinea pig: bloodwork, ultrasounds, fetal monitoring. In and out of the doctors office and hospital week after week I went like a good little patient. Never once did I think about what would happen if they told me something was wrong. What the heck would Ifamily infant Eugenics in todays society have done? Would I have continued the pregnancy? What if I had known that she had “something like” Down Syndrome? What if I had known what I know now about all the difficulties she would have? What would I have done? Would I have terminated the pregnancy? Would I have continued on and dealt with the outcome?

I can honestly say I don’t know what I would have done. I’d like to say with some certainty I wouldn’t have terminated the pregnancy because in general I’d like to think that’s me. But I was young (23) and in a new marriage spawned of that very pregnancy and without the support I depended on most (my mother had passed within a year of this). I was a mess quite frankly. And what would the doctors have said to me? Would they have encouraged me to terminate the pregnancy? Would they have presented me both sides of the equation? I didn’t have to worry about that because not a single test ever showed a problem, not a single test ever gave any of us an inkling of what was to come.

Even at her birth when we knew something was wrong – did anyone acknowledge it? When they had to acknowledge that ½ of her brain had been destroyed by a massive stroke, their advice was to put her away like a piece of broken luggage in an institution and move on – and that was in 1991. I didn’t take that advice but that’s just me.

Remember there’s a statistic that 92% of people who know there’s a difference in their child choose to terminate. Somehow I feel like the medical profession is failing 100% of their patients. It is hard, to be fair, and put yourself into someone else’s shoes however I don’t think that an unbiased picture of the pros and cons of having a child with a disability is being given.

Before you all bite my head off about how dare I say there are cons – there are CONS in parenting ANY child so its completely unfair to say there are no cons in parenting a special needs child. Anyone who has walked in our shoes can’t be honest with themselves if they don’t say this is the hardest job you’ll ever love. (sorry Army advertising team) Maybe it’s because they don’t know the joys of our special children, they really don’t talk about it. Obviously as physicians, they know of the potential medical pitfalls of many special needs children. They do not however know the joys, insights, and incredible love – and I’m not sure who’s educating them.

The current ignition point for this revitalized debate is David Tolleson. He is the executive director of the National Down Syndrome Congress, a not-for-profit based in Dunwoody, GA as well as a local councilman. Mr. Tolleson says he is: “Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome.”

Mr. Tolleson is of course concerned specifically about the down syndrome population but it truly extends to anyone with a disability. What would a parent do if they knew their child would have epilepsy, cerebral palsy, tay-sachs, sickle cell anemia, juvenile diabetes, or knew that their child might be born missing a limb(s) or would likely develop autism. What would they do? What would you do?

Tolleson states:

“All parents envision what their children will turn out to be, but very few of them live according to their parents’ dreams,” he says. “Rather than the Hallmark version, your children are formed by the filter of their own lives and their own experiences.”

He’s right on the mark you know. I am certain that given the challenges of raising just about any teen were disclosed more specifically in advance, the human race would have long since died out.

I guess my problem is that statistic of 92% stirs me in a place so deep I’m driven to revulsion. Who’s to say what will be the next trait determined to be socially unacceptable? Red hair? Green eyes? Deafness? Blindness? When does it move to segregating those considered inferior from the rest of society?

Tolleson makes an incredibly important point in his argument however – above and beyond the specific elimination of any population. With the decline and elimination of various disabled populations there too will go support for care, research, and increases will happen in exclusions from insurance policies.

There are supposed to be differences in our society, it’s what makes our culture rich. Who gets to decide the differences that are ok and those that should be eliminated or what’s acceptable and what’s not. Who is to say it won’t be your kid? Who is to say it won’t be mine?

I’m sure I’ll get messages that are less than thrilled about this post and that’s ok. It’s actually supposed to stir the debate. I know my child. I know many others with a variety of disabilities whose lives have touched mine and made me better for knowing them. I would hate to think that some shortsightedness on someone’s part made it so that someone else missed the incredible opportunity.

Waiting Game part 2

Apr 30, 2008 Author: Kyron | Filed under: General, Medical, Strategies

frustrated Waiting Game part 2

I swear to God (and I apologize to God for swearing) but for crying out loud! As the years past it becomes apparent to me that sometimes you just have to do it yourself.

Doctor’s Office: This is (Name withheld to protect the guilty) may I help you?

Me: Yes, my name is Kyron and my daughter is Katherine and we spoke several times yesterday and you said you would have the results of my daughter’s abdominal MRI from April 24. As of today I still haven’t received those results.

Doctor’s Office: We still don’t have those results in.

Me: Well you told me yesterday you would.

Doctor’s Office: I plan on calling them again today.

Me: Well, you told me that yesterday. What happened?

Doctor’s Office: I called and they still haven’t faxed the results.

Me: Well you should call them again and tell them you have an incredibly irate parent awaiting these results and beg them to fax them immediately so that you can get her off your back.

Doctor’s Office: I’ll do that right now.

Me: {note terse voice} Thank you.

Off the phone we go and then I call my contact at the facility. I get a name and number of a supervisor. I get assurances it’s been faxed already but they will be happy to fax it again if the doctor’s office will just call and request it. No problem I assure them. I take a name and direct number (I’ve been transferred at this point a couple of times) and thank them for their assistance.

My belief is that it has been faxed and the doctor’s office is pretty much incompetent since this person at the facility pulled everything up in a couple of seconds flat. Of course they couldn’t give me information over the phone because they have rules about that. So here we go again…

Doctor’s Office: This is (Name withheld to protect the guilty) may I help you?

Me: This is Kyron, Katherine’s mother AGAIN. I just got off the phone with the MRI facility and you should call Christine at 404-555-1212 right now. She is expecting your phone RIGHT NOW. She has the information already pulled up – all you have to do is call and give her the fax number. {Inference is that she should be appalled that I am doing her job but it’s fairly obvious that she’s non-plussed}

Doctor’s Office: Oh, ok, I’ll call right now.

Me: Thank you, I’ll call you back in one hour.

Doctor’s Office: Oh, ok.

Would you believe as of 5pm tonight I am STILL chasing this freaking report. My only comfort is that if it was catastrophic I’m hoping that the radiologist would have expedited it.

How come that is such little comfort?

The Waiting Game

Apr 25, 2008 Author: Kyron | Filed under: General, Medical

It happens to every parent at some point. Your child is ill, your in a hospital or doctors waiting room just waiting for someone to give you an answer. That’s where I am today only I have the mixed blessing of being at home waiting in front of my computer instead of an emergency room or hospital room (although I’ve done my share of time in both of those).

Katherine has had hypertension for about a year now. We had attempted to address it with diet and exercise alone and it became clear about 2 months ago that this was not working and the blood pressure continued to rise. We put her on medication but the cardiologist we’re working with wanted to rule out renal artery stenosis (narrowing of the renal artery) which can many times cause hypertension. They did an ultrasound and instead of what they were looking for found a mass on her kidney. Well this brought on our first association with a nephrologist.

The nephrologist wasn’t particularly comforting to be honest. The cardiologist seemed to think it was likely to be a cyst – the nephrologist seems to think that cysts are far more comforting in the 50+ set (which leaves Katherine out). So he thinks an MRI to truly understand what it is. Fine. So off we go and wait 4 hours to have the test done LAST Friday only to be told at the last minute that all the metal in her mouth (braces) has to be reviewed by the orthodontist because there’s stuff in there that could break their machine – ok and worse – break Katherine’s mouth. So how do you get mad at them for stopping us from doing that?

The man who runs MRI at the facility we were at gave me his personal business card and said as soon as we could get the parts of her braces which were conductors out of her mouth we could call him and he would not make us go through the wait process again. True to his word I called him and within 1 hour his assistant called us back and had us scheduled for the following day.

This time the test went off without a hitch. She was a real trouper while they gave her an IV for the sedation and contrast. They said after 55 minutes they had gotten what they needed. Fantastic – what did you see??!! Now you KNOW that the answer that followed was one that has frustrated parents from sea to shining sea – We have to wait for the radiologist to review it. Oh SHOOT ME!!

Me: Well now how long?

Them: Oh within a week.

Me: I don’t mean to be impatient but their is SOMETHING ON MY DAUGHTER’S KIDNEY. I’d like someone to just tell me what exactly it is and if it’s something we have to be worried about?

Them: Well you could call the doctor and see if he can get it sooner.

Me: So you mean we have to wait until one doctor actually connects with another doctor??? Does Armageddon happen before or after?

Them: tense laughter, polite smile

So now having called the doctor first thing this morning, first thing after lunch break and 10 minutes before 5 here I am waiting until Monday and praying that the God who saw fit to entrust me with this precious package will understand that I’m mortal and I can only take so much waiting….

Orange you glad you smiled?

Apr 24, 2008 Author: Kyron | Filed under: Disability Groups, Inspiration, News

 Orange you glad you smiled?

Oh no, not a bad joke just look at those kids!! They sure do look like they are having fun!! Your kids can have fun too and for a good cause!

Citrus lovers from around the world including the United States, Canada, China, Korea, Hong Kong, Japan, Singapore, Malaysia and Taiwan are invited to submit original photos of themselves with a creative “Sunkist Smile” (orange wedge in the mouth) to celebrate Sunkist’s 100th Anniversary. Now through May 15, 2008, consumers are encouraged to submit a photograph of their best Sunkist Smile and brief caption to www.sunkist.com/smiles.

Judging criteria are based on Creativity (40%), Fun Factor (30%) and Quality of Image (30%). One grand prize winner from each country will win a trip to any country in Asia and have his or her photo prominently shown on the world-famous Reuters Sign in Times Square in the heart of New York City! Five runners up will each receive a digital camera and one month’s supply of Sunkist citrus!

Adding to the excitement of commemorating the 100th anniversary of the Sunkist brand,logo specialOlympics Orange you glad you smiled? Sunkist will celebrate and honor consumer participation by making a donation of $50,000 to Special Olympics, another brand known for creating joy and helping families stay active and healthy. See www.sunkist.com/smiles for official contest rules.

Terri Mauro of Special Children at about.com summed it up best in her post about this contest when she said the contest:

sounds like a good opportunity to get silly with your kids and upload a photo for a good cause. Since children with special needs stand to benefit from the Special Olympics donation, it would be cool if they were well-represented in the photo gallery, too.

Why not take a bit of time this weekend and have some fun with the kids and maybe you could be the lucky winner!! Certainly all our children who compete in Special Olympics will be winners by building up that donation!

I’m new at this but I’ve set up a Flickr Group ‘The Special Kids’ so we can share pics of our beautiful kids. This way we can see all our kids who we submitted to the Sunkist contest!!

Thanks for the memories Marlee

Apr 23, 2008 Author: Kyron | Filed under: General

Well tonight was the end of the road for Marlee but think about just how far she made it and you can’t help but be proud – and hopefully she is as proud of herself as we are of her.

proud1 Thanks for the memories Marleeproud2 Thanks for the memories Marleeproud3 Thanks for the memories Marlee

Who knows whether she’ll ever see this but if you do Ms. Matlin – you have done us all proud and we are forever grateful for your example. I continue to try to utilize it in my day to day life. My daughter will be quite sad to see you go. You see, she thinks your super cool like Aunt Mary (my stepsister) who is also profoundly deaf and is an amazing mom, wife and teacher. Maybe not quite as good a dancer as you but not many of us are icon smile Thanks for the memories Marlee

thanks to lifeprint.com for the graphical depiction of PROUD above 

Dancing with the Stars Junior Edition

Apr 22, 2008 Author: Kyron | Filed under: Television

Ok did you see that cute 13 year old Brandon and Brittany?? Oh my goodness they were amazing and Brittany is deaf in one ear. It’s the Marlee effect (ok obviously not but hey!) in the next generation. I was so blown away by their performance I had to share.

I do love this little Juniors competition. The kids are so talented and they are so cute ya just wanna pinch their cheeks!! Yay!! Brandon and Brittany advance to the next round in the Junior’s competition!!

There are many children with a diagnosis of ADHD, some concurrent with other issues. A new study from the American Heart Association however is showing that a basic test should be done on our kids taking stimulants for their ADHD.

The American Heart Association believes that all of the estimated 2.5 million children taking ADHD medications should have an EKG to rule out problems. This test should be done on children both who have been taking the medication for some time as well as those who have just started. No one believes at this time that the medication is causing heart disease. It is believed that somewhere in the neighborhood of 1 in 50 of children being treated for ADHD may have a previously undiagnosed disease. For some reason children with ADHD are 3 times more likely to have heart problems.

This MSNBC/Today Show video is well worth watching if you have a child taking ADHD meds. Please take a minute to point it out to a friend who has a child who is taking these meds if yours isn’t. It’s information that should get out there. While it’s not reason for panic, it is most certainly reason to check with your pediatrician or prescribing physician. An EKG is an inexpensive, non-invasive procedure that takes only minutes but could absolutely save a life.

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