An alternative mom telling it like it is

Tag Archives: KS

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!

 


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!!!

 


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


   
 
We have been really encouraging Cheeks when he wants to help (*cough* child labor) with cleaning, cooking, etc. We have been doing a lot of “practicing” as I like to call it.

With us just starting the whole potty training thang.. We decided to make a “practice” board where we reward cheekies (with stickers.. His fav) when he practiced being by the potty….. Or sitting… Whatever!  We didn’t want for it to juuuust to be a potty training thing (at the time we started this… He had JUST shown interest).. So we put a few different things on there.

These are our “practice clouds”:

Cheeks loves helping me clean (we got him the cutest mini broom) and putting things in the trash… He’s also obsessed with helping B in the yard so we added a cleaning cloud….. 

We are working really hard with “please” and “Thank you” so we added a manners cloud.. The way he says thank you is quite…. Well.. Let’s just say it’s a work in progress.

Counting is obvious… He really likes the number 2…. That’s all he counts right now lol… The only time I can get him to count anything really is when we pretend wrestle and he pretend pins either B or myself ha! 

Big boy words is really any time he learns or attempts a new word OR is able to express himself with words when he is upset. We are encouraging him to say what he wants rather than point and cry… Or if he is upset we want him to tell us why.. 

Singing and dancing just makes for a fun time if we are having a mood… We like to sing wheels on the bus a lot 🙂 

  
Our board is nothing special.. But it’s working for us!!

What do you do to motivate their learning process?


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!


  

  
The last few months have been a brutal Cheeks vs Bath battle…. The battle that cheeks had been winning… Until tonight. 

Let’s go back to the day Cheeks met shower…

It was an ordinary afternoon.. And I was giving cheeks his bath. He was having a grand ol time! Playing, splashing, and putting his hands in the stream of the running faucet. To make the long story short, he found the shower release and well…. Showered himself silly… Scaring the ever loving Jesus out of him. Since then…. He would refuse a bath for the next 4 months, Leaving B and I to give him as many cloth baths as possible… Until with agonizing pain, we force him to take a bath. The screams that would come from him tore my heart out of my body and left me in tears.

We tried different things to ease the pain. Switch to the sink, add more duckies, add bubbles (which did NOT help at all!), I got in with him… It was a nightmare… Nothing was working.

Today was a ginormous leap as Brandon and I knew we could not wait any longer to give him a bath. So we took some time to brainstorm a bit and trucked over to babies r us to find something to help. 

We decided on two bath toys, which Cheeks instantly became attached to. A swimming turtle, and a starfish water fountain. He held them through our adventure into Michael’s, and he  knew that he had two toys when he got home.

When it came time for the bath, he patiently waited as we opened them up, explaining to him these were his bath toys, and that he would use them only in the bath. I had my swim suit on and the bath drawn and full of toys when we got up there. He knew what was happening and instantly started to become anxious and hesitant. I got into the bath and started playing with the water fountain starfish with hopes he would find interest. Nope… However he really wanted to play with the turtle… So Brandon hoisted him in with me where he started to cry as expected… But a different cry this time… Not as frightened. Brandon and I started to make our tones upbeat and excited while playing with his new toys.. Making him feel that it was extremely exciting… We slowly started to see him calm down… And after about 10 minutes of solid fake fun… He was settled and playing with his toys.. He sat on my lap, making sure I was in touching distance, and FINALLY allowed me to wash his body and hair in peace.

After he was all clean, we let him play, still sitting in my lap and in the water, until he decided he wanted to come out.. Praising him on how brave he was being. Heck we even refilled the hot water! He spent about 20 min playing :)) 

So after all this time… We had our first peaceful bath in about 4 months. Small steps and patience for this little guy.. But for now, I am a very happy mamma! 

Xox


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

 



%d bloggers like this: