I have been the topic of conversation for many people these last few months. Some good, some bad, and some that I feel really indifferent about.
I recently listened to a friend’s podcast that talked about “sharenting.” This is the term used to describe the way social media is used by parents and their children… basically it’s the culture of over sharing. This was a really great topic of conversation that really opened my eyes to a few things that I may be doing on my own social media site. However, as I continued to listen, I was then brought up anonymously (it was VERY apparent they were talking about me). I was brought up because I openly write and talk about my sons Klinefelter’s Syndrome. They had a few choice words to say about me and that what I was doing is detrimental to my son.. I was called ignorant and selfish for being so public… because of ONE topic they decided to mention about the syndrome… and this my friends.. is exactly why I write and talk publicly about Klinefelter’s Syndrome… education.
The problem that I have with being brought up in this podcast was not that I was talked negatively about.. I’m a grown woman and respect opinions from other people. Some of the points that were commented about “sharenting” made sense. Ya, I might be over sharing.. doesn’t mean this blog will be up forever…
What upset me is that they are completely uneducated in Klinefelter’s Syndrome. Why? Because google doesn’t give them the appropriate information.. as MANY of us mothers have found.
So of course their main topic of discussion was that because I openly talk about his syndrome (which I wish they would have said instead of keeping it quiet), the world may find out about one of the POSSIBLE symptoms of POSSIBLY having a smaller penis/testicles. And that by saying “Klinefelter’s Syndrome” to the world, they will alllll know about “his biz.” Big fucking deal. I don’t want to even get into an argument back about how we should change the way society thinks about penises.. that’s for a different day.
Anyways – Here are my thoughts about this whole thing.
Why weren’t the development issues discussed? Had they had the appropriate information, they would have found that the penis size is actually the LEAST of any parents concerns. Had they gone onto the parent support groups, they would have found that a large percentage of boys with KS have autism, learning delays, and emotional delays…
In my blog, I commonly write about my son’s development progress.
Why weren’t muscle deficiency and height issues discussed? Many boys and men struggle with muscle strength and development creating difficulty with sports or physical activities. Height is also a symptom of Klinefelter’s and can also cause difficulty. Combine height with poor muscle development, and I can’t imagine that could be fun.. and some of these kids grow so fast! I have seen a couple boys be around 6 foot before they can even think of hitting puberty!
Why weren’t the abortion rates discussed? I got an email today from a very nice woman who was scared out of her mind after reading posts on BabyCenter. I know exactly what she was talking about, because I was her at one point, searching for information and left to find many woman talking about terminating the pregnancy after prenatal diagnosis. I don’t want to discuss this too much, but it is definitely something to point out. Because of the lack of information it leaves mothers scared to death!
Why wasn’t the fact that the majority of men and boys diagnosed are overseas? I actually find this extremely interesting and should be brought up. In all the support groups the percentage of overseas diagnosis is blatantly higher than in the US. Why is this? Could it be because getting a chromosome test after birth is upwards of $1000+ in the US?
And most important of all….Why wasn’t the fact that while this is a very COMMON syndrome, there are little to no Dr.’s that can provide information? Why is it that I have to travel to one of 3 states in the US who specialize in this diagnosis or have a chromosome section in their hospital? Why do I have to go to a geneticist to get even the littlest of answers and next steps? Why is it that I have to rely on google for information.. to only be given outdated and incorrect information (minus a few websites)? Why is it that I have to rely on FACEBOOK (of all things) to get some type of hope? Why do women have to come to MY BLOG, to get some type of hope?
I get emails from mothers from all over the world thanking me for my blog.. and quite honestly… I DON’T POST MUCH! Nor do I post real significant information! I mean seriously… while it’s very flattering and amazing… I think it is sad at the same time. Parents should have easy access to the right information.
So am I over sharing? You bet your ass I am! And I will continue to do so until things are changed. Am I speaking for my son without giving him the opportunity to do so for himself? Yes, and I will take those comments into consideration when he is older… but for now.. I’m not ashamed of speaking about it.
Here is the bottom line. I will not hide the fact that my son has KS. Ever. I refuse to hide something that is HIM. He cannot control the fact that he was born with an extra chromosome. Why would l hide that? Why would I teach him to be ashamed of something that he cannot change? I think that would be more detrimental to him than taking away his choice of being open about it. I will raise him to be confident in himself, but also understand the issues America has with people who are different. I think it’s time we change the way our society thinks! That’s my opinion.
We are very fortunate to have found out so young. I’m thankful I can help him become a strong and confident person. I posted this story on the support groups sites; men and parents… I found that when parents find out when they are older, they hold reservations to tell anyone. I don’t blame them in this society nor do I think its wrong. Many of the KS men supported being open about it and hold no reservations to speak publicly.. I have come into a small handful of men who think differently.
In conclusion.. I do NOT have Klinefelter’s Syndrome… I understand this 100%. BUT I am part of a large community of parents who have the challenge of raising a child with this syndrome… challenges of symptoms, lack of information, and the challenges of making the process a bit easier.