An alternative mom telling it like it is

Tag Archives: autism spectrum disorder

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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.


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!


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We are coming up on Mr. Cheek’s second testosterone shot this week and I figured I would give an update on his progress and talk a little more about our journey with Klinefelter Syndrome.

First – I want to talk about his visit with his pediatrician…
We had to take Cheeks to his Dr. A couple of weeks ago and I was disappointed to find out that the specialist had not informed him of his new diagnosis. Do Dr.’s not talk to each other anymore? Really irked me…On the plus side – his pediatrician (whom I love) was actually very familiar with Klinefelters Syndrome! The first thing be said after B told him was, “We are going to have a tall one on our hands!”
He has never had a patient with it before, but he has worked with many patients with other chromosome syndromes and has many patients now with autism. It was nice to know we have someone in our corner on this new journey with us. He said that as of right now his development and motor functions are very advanced for his age (yes!) but he knows as well as we do that that could change in the months to come. We are all on the same page right now as far as watching for signs of autism and that’s all I can ask for. It gave me a sense of relief knowing A. The Dr. truly cares about Aiden (we have known that since his personal call on Christmas when he called to tell us, “I have been thinking.. And I thought about what I would do if this is my son… And id like for Aiden to see a specialist.”) and B. He knows about ks (from what I have read many drs don’t know much). So this is really great for us!

On to the testosterone shot:
– First and foremost there were no side effects that we saw with the first shot. If anything he was much happier and energetic! Which is never a bad thing.
– Within the first week we noticed a significant different in his willie! Before we couldn’t see it at all and now it’s poppin right out!
– I think the biggest change we have seen is in his muscle strength. He was able to lift himself much easier after his shot and has definitely been able to move quite easier.
– As far as his mental development he has been doing pretty good. He has found his screaming voice and has decided to scream and yell at anyone in his sight… Which was really funny at the mall this weekend. Brandon and I have been working really hard object training with him. Anytime he touches something we make sure to repeat the objects name.. Which seems to be working. I plan on starting sign language with him which I hope will help.
He has still been doing his stimulators wrist and ankle rolls.. Which I have been keeping an eye on.

That’s pretty much it on the update. We go into the specialist next week to have his second shot and I will update before his 3rd of this first series.

Also – if you missed my update on the first post about this.. These were the two sites that have me the most valuable info on Klinefelters Syndrom

http://www.openingautism.com/Genetics/ConditionDetails/26

Genetics.org

Written with my iPhone… Sometimes my fingers are drunk… Often my phone can’t translate