An alternative mom telling it like it is

Tag Archives: xxy

13151763_1712841692304614_8464868990624028258_n

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!

12987098_10209445659442417_5584524855051001913_n

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!!


I am really excited to write this post, because we have hit an incredible amount of milestones the last 6 months or so!

A couple months ago, we had sought out an Early Intervention Service to get an evaluation done on Cheekies. For those of you out of the US or those who may not know what EIS is, the early intervention services help diagnose learning/development delays, autism, etc and provide therapy. Everything had been looking good for cheeks before the initial evaluation, but the services were free to us so we figured why not?
Our evaluation came back great, and there is no sign of autism or severe delay. We accepted the offer of speech therapy as well as occupational therapy because there were a couple delays in his speech (nothing crazy at all) and we are seeing slight issue with sensory in eating, sleeping, and excitement. Because of his diagnosis with KS, these services are covered by the state of Nevada and decided to take advantage of the opportunity.

12644764_10208714530964662_9223003356375886952_n.jpg(look how happy he looks here lol)

Speech: 
When we initially went in for the evaluation – we sensed that cheeks was a bit delayed with his words. He was saying a pretty good amount, but only on his time. He also wasn’t really putting two word sentences together. By the time we had our first speech therapy appointment, he has already progressed so much. Our therapist sees that once he goes over two words, he starts to mumble everything together. To me, I think his brain is still learning to think as fast as he talks. We have been working with him to express his words a lot more, and his therapist has been impressed with the amount of attention we have been giving him and his speech. In the past couple of months, he has progressed immensely and is starting to really say sentences and appropriately combining the words and the feeling. It has been amazing to see the progression.
Before we started with his therapist, we had taught Cheeks a couple sign language words to help him express his wants. After further discussion with the therapist, and especially after hearing and researching more information about the tip of the tongue phenomenon we have decided to really encourage more signs and Cheeks is really starting to progress in that as well! Super exciting and extremely proud of him 😀

12509561_10208583038477432_9060912386455427331_n.jpg(
(Helping mom cook pancakes)

Eating:
With any two year old, eating is a struggle, a chore, and a frustration. I believe that a lot of what Cheeks is going through here is normal for his age. The problems we WERE facing – were that he didn’t want to eat anything really. We struggled to get him to eat anything but cereal bars. After really eliminating the bottle (yes that took longer than I wanted and he is still not completely weaned), we saw a big difference in his food intake, however we are still struggling to get him to eat more of a variety. We saw a nutritionist and she didn’t think that we had anything to worry about, so thats good!
I began to notice that we eats the most at lunch time at school, so I have been loading him up with everything in his lunch. As much food as I can get him to eat. Adding extra peanut butter to his sandwiches to get some more fat and protein in him, and really just making sure there is a good selection of nutrients of him.
We tried to get him to drink some meal replacement type protein packet things, but he wants digging the vanilla flavor. My worry right now is that he may not be getting enough protein. BUT, baby steps is all we can do. Our OT suggested that we don’t put a lot on his plate, and for dinner instead of putting everything on at once, bringing out each at a time. So we are trying a bunch of different stuff. One day he will just eat all 3 meals without a problem 😀

12717728_10208898227276955_6791991069590726914_n.jpg

Sleeping:
I think this is one of our bigger issues right now is Cheekies sleeping at night. We go through bouts of him waking up in the middle of the night screaming and then wanting to go downstairs to sleep on the couch.. and of course – mom has to sleep there too ha.
At first – and I’m still not taking it out of question, I thought that he was having night terrors. Our OT suggested limiting the nighttime TV and substituting with something else to see if that works. So we have a couple options there. I am also kind of noticing a pattern with his eating and his sleep. The last couple of nights he has woken up at about midnight/1am and I have noticed it was on a day where he didn’t eat much dinner. So I’m going to track that down and see what we can do. He may be waking up hungry? I don’t know. Lots of tracking when it comes to his sleeping issues.

Playing:
Huge progress at daycare and at home with his pretend play. I have been waiting for this moment for a long time for personal satisfaction and I love that it has finally arrived! Cheeks LOVES to play with dinosaurs, cars, monsters (his personal fav), and really tries to bring you into his little play world. I love it!

Overall guys and gals, we couldn’t be happier with the way everything has been going with his development. I truly believe that love and support of the parents is what truly helps development happen and progress in kids. Get ahead of anything that may pop up, and continue to grow with your child 😀

And even after some of the negative that we have experienced with all of this the last year, I couldn’t be prouder of my son for all his milestones, and couldn’t be more prouder of B and I as parents.

12670211_10208800069503072_3928148235090868497_n.jpg


image1

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!


1977294_10203476126849903_7089759645066226975_n

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.


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.

 

10533325_10204456959208029_6613250175232060344_n

 


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


Hey KS moms reading this! I greatly appreciate you stopping by and keeping up with Mr. Cheeks process!

Not a lot of the symptoms have changed from the first post as far as attitude and what not. I have noticed that with the shots, it allows Cheeks to really take those milestones head on. What I mean by that is within about two weeks of his shot he was crawling instantly. There was really no down time to learn and practice.
His peepee had grown and we were very excited about that!

Other then that there was really nothing to updated as far as the shot is concerned.
I will however say that I am extremely glad we made the decision to get it for him. I can tell its helping his development immensely, not just his penis.

I do however worry about what is going to happen in the next 6 months (that’s when our next appointment and without shots). I feel the shots have really helped with his mental development and I would hate for him to take a step back. We will just have to monitor it.

I am still keeping a log on his milestones as well as any weird twitches and stimulatory rituals he has been doing. It’s really hard for me to keep a balance between watching for Autism and not tracking typical baby things. At this point I am tracking everything, and if he is never diagnosed with any form of ASD, then we will have this nice notebook of silly things he used to do to share when he is older. That is totally fine with me!

This post is kind of scattered everywhere, sorry haha
I have a couple more KS posts that I am going to write today so keep watch!

xo Kayla

 



%d bloggers like this: