An alternative mom telling it like it is

Tag Archives: Klinefelters Syndrom

14708172_10211137713342707_7637747661392702652_n.jpg

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!

 


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!!


IMG_0668

As a first time parent, I have moments where I have severe anxiety.. that twitch in your eye..that “Oh god no!”.. I have taken the time to list out my top 10 parent anxieties for your enjoyment ((in no particular order)).

1. Spaghetti Night: I think that any parent with a toddler will know exactly what I am talking about. We are a family of spaghetti lovers and have pasta at least once a week. We usually take the time for “prep time” before giving Cheeks his dinner. this includes a fully naked body, a bib, and our dog to clean up the thrown messes. 😀

2. Realizing you have forgotten the diaper bag: I have done this more times than I can count and literally get the biggest anxiety attack because of it. While driving all I can think is that he is going to have a giant blow out and my car is going to be covered in poop because I FORGOT THE DIAPER BAG. haha of course that’s a bit dramatic, but you moms know the type of shit that goes on in our brains sometimes ha

3. The calm before the “no nap” storm: Cheeks has really only never taken a nap once… and for those couple hours.. I just thought he was going to turn into this baby hulk. I felt like I was walking on eggshells the whole time… just waiting…..

4. Zero sound & zero smell poops: Maybe it’s just me.. but these freak me out… because you really just don’t know what you’re going to be dealing with..

5. Silence: No words needed. We all know silence is bad.

6. The sound of drawers opening: Cheeks it as a stage right now where he is finally tall enough to open all the drawers. We have all lower cabinets locked up, but now its time to venture upwards.. when your son runs into the living room with a giant knife in his hands for the first time… your heart flutters a bit. CURSE those curious assholes! *shaking my fist at them*.

7. “Hot dog! Hot dog! Hot diggity dog!!”: Remember that eye twitch I was talking about?…. ya… this.

8. When you are driving and look in the rearview mirror and your child looks like they cannot breath and are suffocating, but they are actually just pooping: This has freaked B and I out a couple times. Cheeks legitimately looks like he is dying in his carseat when he poops.

9. Parties: I always get really anxious when I am going to a birthday party or a gathering with a bunch of other parents. I honestly don’t care what other people think of my parenting style, but sometimes I cannot help but judge my own parenting by watching others and their styles. I also don’t know how to handle other children being inconsiderate.. and honestly my biggest anxiety is just trying not to lose my shit on other peoples kids.

10. Walking out of the stroller: I think right now this is my biggest anxiety. We have been slowly allowing Cheeks to walk outside of his stroller while we run errands.. but a couple of times he has thrown fits because he just wants to run free. It’s hard, and I know that the more we do it, the better he will get.. but yikes.. fits. *shivers*

So there you have it folks! My top ten parent anxieties!

Comment below YOUR personal parent anxieties!

xoxo Mammablutte

5.


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.

20140921-184503-67503434.jpg


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: