An alternative mom telling it like it is

Tag Archives: klinefelters

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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!

 


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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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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Halloween is our favorite time of year. We love decorating the house and getting watching movies.. it’s our Christmas. Last year was tough because I just had Cheeks and we were scrambling to get moved and situated after the birth. This year, was just as stressful, but we were able to get all dressed up, decorated, and even took Cheeks trick or treating.. which was ADORABLE! I think next year he is going to enjoy it so much more!

We also went to the pumpkin patch as a family.. of course we went last minute and the weather was just not in our favor. It sucked actually. It was stupid windy and just kind of made it miserable for all of us, but we made the most of it and Cheeks really enjoyed the hay ride. We will definitely be doing that again!

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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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