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.
gglissman
March 30, 2015 at 1:37 pm
You are completely on target with all of your points and I’m very happy you have a mechanism to share information about XXY with lots of other people. This genetic signature can have challenges but those challenges respond very well to early and correct support. That can make a huge difference in the life of an XXY person and it is a tragedy that more health and educational professionals are not aware of current research and best practices. It is crazy there are only a few specialized centers in the US that are experienced and capable of providing excellent care. The AXYS group is working on improving that but still have a long ways to go. Keep up the excellent blogs and sharing of information…..it could have a profound impact on more lives than you know.
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MammaBluette
March 30, 2015 at 1:53 pm
Thank you so much Gary! you have no idea how much that means to me!
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Forscher
March 30, 2015 at 1:47 pm
great posting, thank you. I’m asking the same questions and I totally agree with you. I won’t hide that I’m XXY myself because it is so important that people know more about it.
Check out also my blog http://factsaboutklinefelter.com/ (some english articles are available as well)
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MammaBluette
March 30, 2015 at 1:50 pm
Forscher! Thank you! I cannot tell you how difficult that was to find the follow button! ahha Im going to have to translate your site, but i am excited to read!
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Nancy K
March 30, 2015 at 2:41 pm
Thank you for your post! I will continue following your blog and your experiences. You are awesome!
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xxyzguy
March 30, 2015 at 4:18 pm
77% of XXY boys have a BIG penis. Well it must be big as 23% are described as having a less than average sized penis. It’s always the minority that gets the headlines though. Such as I saw a documentary (American) that stated 24% of year 10 students had race bias in their decision making, and completely forgetting that 76% of students in the same group had no race bias at all. Roughly three quarters of all XXY boys, and American year 10 students, are perfectly normal in their genital and social development.
As an XXY man I can say for certain that as a child I was not overly tall, was not obese, was not uncoordinated. True, I did have educational difficulty, but we don’t throw the baby out with the bathwater just because a child learns differently. XXY guys are not lower in overall intelligence, because having mild LD’s is not a sign of retardation!
Luckily many XXY boys are now diagnosed prenatally, or in childhood, but sadly MOST are never diagnosed at all. However assigning these boys to the scrap heap of syndromes won’t do them any good, those that are found. Teaching the ever so slow to change medical profession from their own information is truly an uphill battle. Your boys MIGHT go on to develop the syndrome Dr Klinefelter described in 1942, but they probably won’t as they have been discovered.
Dr Klinefelter studied fully grown hypogonadal men, not babies and children. If you think of your children as XXY boys, you may appreciate them as human beings more than by thinking of them as males with a syndrome? Certainly those prenatally diagnosed will have a better chance of life if their mothers are taught they’ve just got another chromosome, rather than a syndrome that can only develop IF they don’t receive proper medical therapy.
I’m XXY, I’m a parent, see how not impossible life for XXY is now? I want the best for my daughter, I want her to experience life to the fullest, and to do that she must leave me and strike out on her own. I am only her temporary caregiver, she will care for herself long after I’ve gone. By the same token, parents of XXY boys are temporary caregivers too. Let the XXY’s find their own wings, let them soar as the song goes. Let them tell you who they are.
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MammaBluette
March 30, 2015 at 4:21 pm
Thank you for the comment xxyzguy! Always appreciated!
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Jenna
March 30, 2015 at 6:52 pm
😊😊😊😊😊😊
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care
April 1, 2015 at 1:02 pm
You go girl. I also have a blog (thelittlewarrior.com) that I post to from time to time. Education is SO critical and we have a responsibility to our sons.
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Kathy
April 2, 2015 at 4:15 am
Can’t wait to hear your opinion when your son starts school. We’ll see how much sharing you will do then. Hopefully by that time your son won’t face the discrimination most do and that is why we all don’t tell the world of our sons diagnoses. It’s good that your positive..now
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xxyzguy
May 15, 2015 at 7:42 am
I’m XXY, I’m treated to prevent Klinefelters’ syndrome from showing. My parents knew they had a child with problems, and it made no difference, they didn’t change a thing at home to ameliorate what they knew. They didn’t know I was XXY. They thought the problem was something else I took medication for, but I never had it, it was a misdiagnosis.
These days, well since 10 years ago or so, once I got proper medication for the educational issue I have, I discovered if professional people find out the name of the medication I take, they treat me differently. Some seem to have expectations that there will be no issues, but the medication is a help, not a panacea. It cannot and will not cure other peoples prejudice and paranoia.
If my son, (I do have a son), were XXY I’d want his teachers to know IF the XXY caused him educational difficulty. There would be no need for them to know anything if he was not affected in ways that affected schooling. I think the ‘wait and see’ approach is best.
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rocky
September 12, 2016 at 7:17 am
Hey I have a question..
Is doing Pushups and other workout will help in Klinefelter defect….and secondly does green tea is good for Klinefelter patients
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yvyvyvyvv
December 29, 2016 at 7:56 am
Thank you for sharing ! I am pregnant and found out that my baby got a xxy chomosome too. Your story means a lot to me.
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MammaBluette
November 16, 2017 at 4:07 pm
Im so glad!!! I hope all went well with your delivery!! I just posted a new update! xxo
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Quantamama
April 1, 2017 at 5:35 am
Thank you! I know this is a year old, but don’t stop talking about Klinefelters, it’s NOT oversharing. It gets tiring educating people sometimes, I focus mainly on the school and medical staff, but I’m learning to always have a brochure to hand out. My 14 year old son is 47/XXY, KS, and nearly 6′ now that puberty has struck.
About medical care…things are improving. More clinics are opening, there are seven multi-disciplinary clinics set up around the country now. There’s a big push from AXYS to continue to set up more clinics, so that you don’t have to travel across the country to get the care your son needs. https://genetic.org/im-parent-affected-child/clinics/
I’m blessed to be in Colorado because we have the eXtraordinarY Kids Clinic at Children’s. My son’s care has been spectacular and it’s so wonderful to get my questions answered when they come up, and letters written to the school when I need official explanations. I meet a lot of people from out of state while sitting in that waiting room.
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MammaBluette
November 16, 2017 at 4:02 pm
Thank you for your post! I am definitely going to try and write more – its just been a very hectic year haha However – we plan on taking him to colorado when he needs to have puberty started! Would love info if you have it!
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xxyguy
December 4, 2017 at 10:14 pm
Hello, long time no chat, I’ve never heard of XXY’s having to have puberty started for them, all the reports I have say they start puberty within the normal range for males, around about age 11, which is when I started puberty too.
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Ben
April 28, 2017 at 11:07 pm
I found out I had 47xxy 2 years ago after my wife and I were trying for a baby but could not. I’m 38 now, but often I would ask myself ‘if I’d known this sooner, how would it have affected my thoughts/actions around love, girlfriends, marriage and family.’
Even though your son maybe young now, how will you encourage him around his attractions to girls/boys knowing full well that he is infertile?
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MammaBluette
November 16, 2017 at 4:01 pm
Hi Ben,
We have a lot of friends who have kiddos through IVF. I also come from a family with adopted siblings. Our plan is to be 100% transparent with him (when the time comes) and we have started the “conditioning” process of other forms of becoming a parent. We would have done this anyways because lets face it – its hard to get pregnant now adays and our household believes that all forms of conception should be normalized and that is what we are doing.
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xxyguy
December 4, 2017 at 10:22 pm
Would your wife have married you if she knew you were infertile? What does she say? My wife did know, and we obviously got married, we also got divorced. Before then we had 2 children and our daughter is currently ending her second year of university. Life goes on even for XXY’s.
Another fellow when diagnosed, recently, because of infertility had his wife leave him. He went on to start a support group for the discovery of XXY’s, but what happened after that I don’t know? He can be found on YouTube and Twitter.
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William Bertram
June 11, 2017 at 9:24 pm
As a 47 year who was diagnosed when my wife and i were trying to get pregnant back in 1998. I think you all are blowing all of this way out of proportion. There was no information for me but i survived. My parents never knew until a couple of years ago when i told them just becuase of the genetics of our 2 children. The only thing i knew about klinefelters at the time was it was the reason we could not get pregnant. We found another way and life went on. As much as you think you may be helping your are also hurting your son with all the attention to the syndrome.
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MammaBluette
November 16, 2017 at 4:05 pm
I appreciate your comment – I know it seems like things are blown out of proportion.. I mainly write my blog because of all of the pregnant women who email me on a daily basis who are scared. They are scared because of baby center chat rooms, misguided information, and fear of the unknown. I know it sounds silly – but abortion rates of KS diagnosed babies is rising because of this and while you may not agree with what is being posted, I have gotten a LOT.. and I mean a LOT of emails from scared mothers who are more comfortable now. So I’m ok with blowing things out of proportion and writing a blog about my sons development.. because it shows that worst cases don’t exist in every child.
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xxyguy
December 4, 2017 at 10:34 pm
The trouble with XXY is it doesn’t affect all XXY’s the same. For you, information is a waste of time, for me information was non existent in 1976 when I was diagnosed, which was devastating. “What woman would want me?” Was my first thought. Until I knew, that thought never entered my head, as it never entered yours. A lack of information kept you safe. However, if there was a possibility of finding viable sperm in you, when you were younger, if you were diagnosed early enough, that might have made a difference to you?
I welcome opportunities to talk about XXY, as it gives greater opportunity to get more diagnosed.
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