blog1If you read my opening post about Mr. Cheeks being diagnosed with Klinefelters Syndrome, you may remember when I mentioned zero information being listed on the internet and I turned to facebook support groups. This is my follow up on those “Support Groups.”

I have joined probably…. 5 or 6 Facebook support groups since finding out. Let me run down the typical groups of people you are going to come into contact with in these groups.

Lets start with the Parents groups:

– The Doomsday Parents –  These parents usually completely ruin my fucking day. Every post is about something so negative about either KS or about their child. These people make parents like myself (and probably you if you are a KS parent reading) scared to death about the future to come. Now, I completely understand that the whole vibe of support groups are normally dark and negative because that is the only place parents can express their true feelings about dealing with it, but the way I look at it, is that your child can’t be a fucking nightmare all of the time… Share some positive people!

– The Bragadotious Parents – These parents give me the most hope, but they also annoy me the most! They are the exact opposite from the Doomsday Parents! Almost too much positivity that it almost seems fake. Most of them post about how their child got an A, or won a sports game, etc. While it can seem to be overboard at times, it levels out the huge clouds of negativity coming from other parents. So I like them there. They can stay.

– The Inbetweeners – They are the most level headed and post just enough real negative as well as real positive.

– The WHAT THE FUCK Parents –  This is me. These parents add the group because they are at a whole new level of panicked after finding out their son has been diagnosed. We seek as much information and support as we can and have found that there is no information on public sites really and have added these groups in hopes of finding some supportive friends. Then we get here and almost find too much information or not enough of what we are looking for.. so we try other groups.. maybe the ‘Adult Groups’ can shed some light on whats to come… and then after getting there.. as a female parent.. you realize that was a horrible idea..

Which leads me into the Men w/ KS Support groups…….
There you will find the:

– Woe is Me Men – Holy cow… these guys are depressing. They blame their whole lives on Klinefelters Syndrome, most of these men found out at late ages and need some serious therapy. (I don’t mean that in a degrading or mean way, it’s just observation and with me in therapy every week, I can honestly say it helps). A lot of these men also fall into the next category..

– No Girls Aloud Assholes – These again, consist of old dogs and the Woe is Me dudes… but they HATE that moms join the group because they feel they cannot talk ‘man talk’. For me, whenever I see them get upset I just want to be like… why do you think we moms are on there? We WANT to here your man talk. That is when you are most honest about the symptoms with KS as well as when we get the most information on what could come in our futures. But these dudes HATE that females are on there.. even more so that on one of the groups there was a woman who had made the group in the first place.. they get added and are all like, “I didn’t realize this group was created by a female. I’m leaving.” ha Get over yourself.

– I’m Right and You’re Always Wrong Assholes – These men and sometimes women are the main reason I have left most of the KS groups on facebook. If someone asks them a question, good lord if you don’t get an argument you should thank the lucky stars. I think these people are in any group period so I cannot just say these are KS specific. I’m all for a good debate and or argument, but the way these people handled themselves was completely nutso-bananas. So rude and disrespectful. If you are new and reading this, beware but don’t be surprised.. and DEFINITELY do not respond to them. It will only infuriate you. I suggest not even reading their comments.

– The Good Dudes – These guys don’t blame KS for whatever their childhood was like. These are the guys to talk to! They actually want to help people like us, the lost souls looking for information or hope. I have been able to personally message some of guys and ask whatever questions I want with honest answers back. For any of you reading this, you don’t understand how much that means to us moms.

– The Proud – These are the men who are proud to have Klinefelters Syndrome. I categorize these guys with the Good Dudes. They are always posting helpful information or posting positively and realistic on the subject. Again, to some of you that i have been able to personally message – Thank you.

This post is meant to express that with a basket of apples, you are going to get a bad one with every 10 in that basket. And for newbies such as myself, I would have loved to have known that.
Support groups should be a community of people wanting to better each other and let people express themselves, but there are good and bad ways of doing this.
I have found that personal blogs have given me the most real support. Which is a big reason why i started this segment in my own blog. Not only will people like me be able to read a personal experience, but it also helps ME a lot. This is the BEST spot for me to express my concerns and my progress as a parent. What I would love to see is some of you new parents like myself reading this to start a blog about your journey.. lets start our own support system.

 

xo Kayla


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