An alternative mom telling it like it is

Category Archives: Klinefelters Syndrome Support

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Hello everyone!!

Since I get an overwhelming amount of new parents writing me, I figured I would direct a lot of my content towards you all!! Ultimately I feel that these types of articles will be most valuable and I am going to do my best to make them as informational as possible.
But please note: All the information and stories I am giving you is based on MY experience. You may go through something different.

On to today’s topic. Early Intervention Services: For all of you new parents to Klinefelters, I HIGHLY suggest looking into what your state offers for these services. Here in Nevada, with a diagnosis by a Dr., our early interventions services were completely covered by the state. This was a very pleasant surprise to me and when we initially decided on the idea to get an evaluation done; we were trying to figure out how to pay for it.

With early interventions this is what we received:

Autism evaluation: Which he tested “negative” for autism

Speech Therapy: We had a speech therapist come ever couple of weeks to the house and then 2 times a month at his school. This was so beneficial in his talking development. And even though he was progressing as he should have been, the services were free  and therefore we made the decision to take advantage of it.

Occupational Therapy: This was needed for us big time. Cheekies was having a lot of trouble with textures, eating, and over stimulation. We made a LOT of progress and our therapist gave us really amazing techniques that helped him progress to a normal living.

Special Education Evaluation and discussion with the school district: Early intervention services ends here in Nevada once they turn 3. As you near the ending, our case manager sets up an appointment with the school district to talk about future plans and also get evaluated for any special needs programs. Ultimately Cheekies failed the evaluation which was amazing for us because that meant he wasn’t in need of special education. SUCCESS! We were very happy about this. We also found that with all the services we were getting from early interventions and the home techniques we were enforcing at home, Cheekies was way more advanced than he should be. So that was awesome!

Throughout this process, we found that because Cheekies has KS, he qualifies for the 504 program in school which is a sigh of relief because if in the future he starts to show signs of falling back, we can either work with his teachers a little more or we can seek different types of help to catch him up. So that’s great news (again, check in your state or country)!

The biggest point in that I want for you to take away in this post is this: Yes, there may be some delays, and yes you may need to work a bit with your son to help the progress a little. But ultimately folks, just like any other child – love, patience, and education are you biggest winning tools. If you can use services for free – take advantage of them!

Positive vibes and love love love!

 

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14102457_10210530047431439_2555709058498214472_n.jpgIt’s been six months since my last blog post and a little longer since my last Klinefelters post.

I want to say sorry for the lack of blog commitment but honestly folks, we have been making memories and I’m really not that sorry! We have had the best year ever and I really wanted to enjoy life and vowed to keep less distractions after coming off of the road (I was on an international tour the entire year of 2015 and really wanted to make up for lost time).

With that said, this evening I was going through my blog emails and realized that people are still emailing me! It’s crazy! My heart gets so full every time I read your emails and tonight I am reminded why I started this blog in the first place. To help myself cope with something that I am now able to somewhat help other moms cope with as well. And I realized that as much as I want to eliminate distractions, the klinefelters community kind of needs me – even though many do not agree with my honest approach, there are still moms out there who are searching for the realness that I give, and I cannot let those moms down.

So here we are.. blog restart part 3 lol

I have SO many great articles planned the next couple of months. Many to do with Klinefelters and others to related to raising toddlers.

I will have my first post back posted next week for you all to read!

If there are any topics you want me to touch on in the future please comment below!!!

 


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Hey Everyone!!

We are extremely excited to announce that we have KS Buttons for sale – all proceeds will be donated to AXYS – An organization whose mission is to help individuals with one or more extra X or Y chromosomes and their families lead a fuller and more productive life. AXYS has also been an incredible help to our family personally and has ALWAYS been great support of our journey and my blog.

A little bit about how this all came about:

My husband and I are huge disney fans and have recently created a Social Club back in December. One of the main perks of joining such an amazing culture is the collection of pins and buttons and the amazing support everyone has for each other. We have decided to spread positive awareness by selling these buttons! Already we have had an overwhelming amount of orders from the disney community. It has seriously been awesome!

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Buttons are:
1 1/2″ Round
$1.50 (includes shipping)
All proceeds donated to AXYS

Please email me with your order at: roebling.k@gmail.com

As of this moment we are unable to ship overseas – BUT are looking for options to be able to do so! If you are overseas and would like to purchase – please email me to be put on “back order”.

 

 

Thank you all for your support!!


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An appointment we were genuinely excited for, turned to complete shit within the first 15 minutes of our meeting. !warning – unorganized rant ahead!

*I’m not going to publicly say where we were at or the Dr.’s name (however if you email me I would be more than happy to)*

A couple of weeks ago, we took Cheeks to his first geneticist appointment here locally in Reno. We didn’t know that there was one in town so we were extremely excited when we learned we could take Cheeks to a local Dr. rather than travel out of state.

After about a months wait, our appointment finally came. I had a wide range of questions that I wanted to discuss as well as was excited to hopefully learn some new things about KS I may not have known already.
When the Dr. came into the room, her demeanor was very… bitchy is probably the real term, but to be nice we will say harsh.
She rushed through the opening of her discussion and took out a stapled pamphlet and began “teaching” us about KS…(it would be nice if I could meet a Dr. who doesn’t have to read something off to me that I have already read)…. anyways – as she was rush reading through the paper, she stopped at a point where it talked about Tip of the Tongue phenomenon (you know that moment when you are trying to think of a word and its right at the tip of your tongue and you can’t figure it out?). She said that boys with KS struggle with this on a different level and that Cheeks will more than likely have this happen.
I thought to myself as she was talking, Cool… we will work on it – *cut off by Dr * “So your son is either going to internalize this and not make any friends, or he will become aggressive and you will have a lot of issues.”……… ok… waiting for the third option…… nothing…. blank stares… Me: “Well he has been doing pretty good right now and we are really working on trying to alleviate some of these issues -” Her: “Well he is only two.. once he hits about 5 everything goes down hill.”………………………What? I mean shit lady, lets throw another fucking black cloud on an already stressful situation.. You could have said something positive here. Fuck.
So she goes on talking more about unless information and categorizing my son into different groups… and at this point my anger thermometer is just sllllooooowwwwlllyyy growing… and then the mother load of stupid fucking comments came.

“OH.. and your son will more than likely not go to college.. KS men don’t go to college..” UM…. EXCUSE  ME? “…..But its ok though..” (she can OBVIOUSLY see my face of pure explosion at this point).. “Blue collar work is fine too..”……Ok bitch… ok.. and I’m done. Not only was I extremely offended, but I just couldn’t fathom that something so ignorant, stupid, and insensitive was coming out of her mouth. And if you’re reading that and you think, awe thats not too bad… add a condescending and degrading tone on it and then re read. I. Was. PISSED.

So now that this main story (and trust me this isn’t even the whole appointment.. many more things happened), let’s discuss how I am feeling about all of this.

First of all.. I cannot wrap my head around how this woman was hired at a special needs facility. She was harsh, aggressive, insensitive, and honestly I didn’t think she knew as much about KS as she lead on. I don’t say that because the bullshit that ensued at our meeting, but supposedly she had a large amount of clients with KS and also extensive amounts of knowledge.. yet still read everything from a pamphlet..and any time I had a question, she read her answer from the papers.. I call bullshit on that. Personal opinion and not fact.. but my gut tells me bullshit.

Second, give us a little bit of fucking hope man. I left the meeting in tears because I felt that the whole thing was just her saying that your son is not going to succeed and this and that. You don’t even know my son.. you don’t know us.. I felt no hope… no positive.. and scared.

Listen, I am ok with hearing information that maybe I didn’t want to hear.. I’m ok with that. But KS is NOT a disease. There is a wide range of symptoms he COULD have.. not WILL have.. so there is a very large possibility that the things she listed will not happen. THAT and we found out when Cheeks was so young.. there is a lot of early prevention that we are blessed that we can start now.

Third, I absolutely FUCKING HATE when I feel like another fucking number at the DMV. All I want is a Dr. to sit down and TALK to me. Not spout off some random information that is easily accessible online and then make me feel stupid when I have legitimate questions about development and future planning. We need for Dr.s to help support us… not make us feel incompetent.

Needless to say – if you haven’t gotten the vibe already – we will not be seeing said Dr. again, and have plans to in fact travel outside of the state to hopefully get a better plan on the future to come.

Cheeks has been developing SOO wonderfully and we want to keep this momentum going!

 

 


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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.


It has been a crazy month for us and man do we have some great updates!

First and foremost, we have been accepted to take Mr. Cheeks to the Salt Lake City Children’s Hospital for further genetic/chromosome testing! We are extremely happy about this because I think we are finally going to be able to get some in depth information! I’m hoping that we can also have a solid plan on how to move forward from here with development and such. Super exciting!

Mr. Cheeks is a walking machine!!!! He finally gained the confidence and walked from me to the couch a couple weeks ago. My heart melted and we were extremely emotional about it. Not because he walked, but because of how proud he was of himself for finally doing it! Watching him grow into a little human is so amazing, and seeing him express pride for the first time was just too much. Now his confidence is through the roof and he is attempting left and right to get the whole walking game down. Right now he looks more like a drunk monkey, but hey! He is doing it!

Mr. Cheeks has been a talking animal! I love it! He is still a fairly quiet kid, but man he is starting to understand. He has been really good with talking to us, and also trying to repeat words. So far his list of words include: Mamma, Dad, Uh Oh, Owe, and Neenee (we aren’t exactly sure what that one means, we are thinking night night?).. who really knows!


10552382_10204456958488011_2491375724114692771_nI have always contemplated the whole ‘gender neutral environment’ for children. Even before having Cheeks it was something that made sense to me. The whole point is that it doesn’t force any preconceived gender norms onto your children and let them experience their emotions, life, feelings, whatever you want to call them.. on their own.
So before we get into an uncomfortable, arguably confrontational topic.. and before you make any type of judgment, comment, or opinions, please hear me out.

Cheeks has Klinefelters Syndrome. He has an extra X sex chromosome ((XXY) – an extra female chromosome). That being said, along with learning disabilities, it is not uncommon for men/boys with KS to be overly emotional and in some cases have gender identity issues. This is definitely more apparent in boys who do not get testosterone treatment.
Now, I have a couple of amazing friends and have met wonderful men and woman who are transgender. I have heard the accepting and beautiful stories and I have also heard the horrifying.

This is where gender neutralizing has recently popped up again and another list of fears roll through my mind.
I would never want my son to feel unsupported in his emotions. No matter what age he is and even if he didn’t have KS, his emotions are out of his control and he shouldn’t be punished or ridiculed for that. I am definitely not saying that I am going to put him in a dress, only buy him girls toys, or put makeup on him out of no where.. BUT if the day comes where he wants to be a princess for Halloween, likes the color pink, or decides he would like a Barbie instead of a WWE action figure.. I most definitely will not tell him no or tell him that those toys “are for girls.” How could I really say that? I mean, his natural makeup is XXY… he technically has more of a female makeup (mind) then he does male. So how could I tell him that “these are for boys” and “you shouldn’t play with those because they are for girls?” What if those words crushed him? Made him feel like he wasn’t normal.. I wouldn’t be able to handle that. I would never want that. So Brandon and I have discussed having a gender neutral home, and I have obviously offered to do more research.

I have no idea what his mind is going to do, or what symptoms we will face with Klinefelters. At the end of the day literally nothing could happen and he could show zero symptoms. But I like to prepare myself because my decisions will make Cheeks into who he will become. My decisions and parenting will effect his development.
Yes, I prepare for worst case scenarios. Yes, I get paranoid and do way more research then I should and need to. Yes, I’m a clinically diagnosed control freak. And yes, I am overly protective. But I’m a mom now. That’s what I do.

 

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