An alternative mom telling it like it is

Tag Archives: autism

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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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Hello All!

I cannot believe we are hitting the 18 month mark ((actually 19 months this month))! It feels like just yesterday I was finding out about my pregnancy.

We had a fantastic check up Monday! Dr. Says he looks perfect clocking in at 22.6 lbs and 32.5″ 😀 Yes, Cheeks is getting long!

As far as his development goes, I honestly could not be any happier!

I cannot stop this kid from babbling! Pretty soon he is going to be saying sentences and its going to freak me out!

He is so smart.. i know parents say this all the time, but he really is! He knows which are my shoes and which are B’s and always sorts them and sets our shoes by us. It’s a trip!

Mr. Cheeks is obsessed with WWE wresting! It’s adorable and hilarious at the same time! He wrestles with anything he can! Toilet paper, pillows, the couch… US! Its adorable!

He is just enjoying life at the moment.. being a little boy!

SPECIALIST UPDATE:

We have not yet taking Cheeks to the specialist out of state. We are still trying to figure out what our new insurance is going to cover and honestly, it’s not a pressing issue for us right now. As a traveling mom its hard to find the right time to take him and honestly, there is nothing serious going on right now to make it a complete #1 priority. Not to say it isn’t important to us, because it is obviously, but we are enjoying the path we are given at the moment. We will keep you all updated as time goes.

Thats about it guys and gals! Thanks for reading!


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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.


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I know what you may be thinking, “ignore the syndrome?” I know it seems weird, but here me out.

When I first found out that my son has Klinefelters Syndrome, I went into mamma bear mode. I learned everything I could, I joined every group I could, I tracked everything I could; I was on a rampage to learn. This is great, don’t get me wrong. You absolutely should gain all the knowledge you can.. but you cannot obsess over it.
I found myself with high anxiety with so many nights of little sleep just stressing on what could happen. That’s the beauty of syndromes is that you have no idea what could happen and what symptoms your little one will or wont start developing.

Here is where IGNORING the syndrome comes to play.
Enjoy your child ladies and gentleman. Stop obsessing. Get the knowledge you need to understand, see the Dr.s you need to treat properly, but all together ignore the syndrome.

I cannot tell you how much easier it is to handle everything when you just enjoy your son. You will not be able to go back in time and relive these wonderful years… so why waste them now by obsessing all the time about what could happen?

My best friend just posted a story about her daughter. She has spent much of her very early years with severe OCD tendencies. My friend would worry herself to death trying to “fix her”. That being said, it wasn’t until she stopped worrying and started to just accept that her daughter was who she was that they were truly able to live normally.. and most importantly.. happy.

Ignore the syndrome… enjoy your child. It’s the best advise I can give at this moment.


Sometimes I honestly feel like I have absolutely no idea what the hell I am doing when it comes to this whole parenting thing. I find myself reading too much about what and what not to do. Like right now for instant. I have no fucking clue what to be feeding my son. I just kind of go with the flow and give him what I think he may want and kind of… go from there I guess?
I gave Cheeks PB&J today. Is he a little young? I have no fucking Idea. So fuck it. Why not? And he totally dug it! He mowed through those PB&J squares like it was going out of style.

OMG I have to sidebar really fast. I gave Cheeks real juice for the first time today without diluting it with water. Dear Lord it could have been the funniest thing I ever saw. He was acting as though he was drunk mixed with high on coke. His mind was blown.

Ok — back to clueless parenting – I have pretty much given up on listening and reading. So far, we have done things our way and it has worked for us. I feel like the best way to parent is to do what feels right for you and your family. Yes, you may get some backlash. No, it may not work. Yes, you will try something new. and Yes, your child will survive.

Thanks for reading my rant.

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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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