In making more of an effort to keep updated on this blog, I have spent the last couple of days going through different topics that I should write about.
I instantly remembered reading conversations on the parent groups about this mysterious word that KS kiddos (and let’s be real, all kiddos) seem to melt down about. That pesky two letter word NO. And wouldn’t you believe, we have the same problem in our house!
We noticed it started to get worse at around his 3rd birthday. Which is also fitting because we didn’t have the traditional terrible 2s that most warn you about. Nope, we had the I may murder my child 3’s :D. However, the one parenting thing I can confidently say that my husband and I have on lock is maneuvering the word NO and also calming the tantrums to under 5 minutes without yelling or losing our cool.
So what do we do? Options.
This parenting tool originally was something I had “come up with” off the top of my head, but after a recent discovery – there are a lot of parenting books that use this method as well! WINNING!
So how do we use options instead of no? Well, if Cheekies is wanting something or is throwing a fit about something, we will give him two options to choose from that are parent approved in the direction we want him to go.
EXAMPLE: Halloween just happened and obviously Cheekies wants candy for breakfast dinner and lunch.. the candy is also a common tantrum we have faced the last month. 9 times out of 10 he wants candy BEFORE dinner.
Instead of telling him “NO. You don’t need candy.” I will first start by telling him that he needs to eat his dinner first and then he can have a piece of candy. I have already predicted that he will throw a fit, but trying to tell him he needs to eat before treats is something I find important because he will sometimes listen. (hooray on those days) But alas we normally get a small tantrum.
My next step is to crouch down on his level and give him his options: “Here’s the deal, we can either eat our dinner and get a piece of candy, or we can not eat our dinner and get zero pieces of candy. What would you like to do?” This gives him the control toddlers are subconsciously battling with as they mature, but it also allows them to do what you need them to do without telling them NO.
We have done this at home, in stores, at disneyland, and school, anywhere we need to. It works for us immensely and will probably be something we practice for a while. We have been able to get his tantrums calmed within 2 minutes of it starting which I find to be a success. And if the tantrum does turn into a mini meltdown, we go into our meltdown parenting style which I will go into on a different post, but its mainly giving them chill time and redirecting.
Anyways, I hope this helps for some of you. I believe this tool is probably best used the younger they are – not sure how it will work with older kiddos. And AGAIN, this is what we do and what works for us.
Share in the comments below what your experience with the word NO and how you overcome these battles 😀
It’s been a while blog land! We have been a busy busy family!
I wanted to write an update, because I am still getting comments and emails from new moms and such and I wanted to share some real world positive shit for you all!
Here’s a little about cheekies as of his 4th birthday:
- He is EXTREMELY smart – does really well in preschool and with his friends. I truly believe the OT and Speech therapy we did when he was 2 was put into good use. If you have the opportunity for OT do it! It’s a great way to kick start the curve.
- He has some sensory issues, but we have been working with him and we have it under control. Sensory issues include: sound, crowds, and texture. He does have meltdowns because of this from time to time – but my husband and I have that on lock.
- He is an emotional little boy – meaning he has some feelings and can also sense other peoples feelings extremely easily. I love this quality about him because he notices things that I wouldn’t expect a 4 year old to notice. Example: if someone is upset he will try and console them. He can also tell if a child has special needs and will immediately start interacting and playing with them. He also likes a little more love some days and I’m 100% ok with that!
Other than that – he is a normal 4 year old boy 😀
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!
Welcome to my kitchen!!
I stopped eating meat in April of this year. I stopped eating meat for a multitude of different reasons, but that’s not what this post is about.
In my meatless venture, I have found that good recipes for simple lunches are hard to come by and planning lunch has been my biggest struggle. I need lunches that are high in protein but also have a good amount of carbs because I workout before I eat lunch.
I figured I could share with the interwebs some of my favorite and EASY recipes. The best part is that you don’t have to be vegan or vegetarian to enjoy! Even Ron Swanson could get behind these 😉
So here we go! The EASIEST chili ever!
1 Can Kidney Beans
1 Can Black Beans
1 Can Chickpea1 Can Corn
2 Can Diced Tomatoes
- Poor everything into big pot.
2. Stir until warm.
Its that simple folks!!! If you find that the tomatoes haven’t flavored it enough for you, add some garlic powder, chili powder, or even just some salt and pepper. But I find that the natural flavor it has is enough for me.
This pot gets me about 7 1 cup servings.
Original recipe credits go to a woman on youtube – wish I could remember her name or channel name.
It’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!!!
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!
1 1/2″ Round
$1.50 (includes shipping)
All proceeds donated to AXYS
Please email me with your order at: firstname.lastname@example.org
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.
(look how happy he looks here lol)
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 😀
(Helping mom cook pancakes)
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 😀
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.
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.
An appointment we were genuinely excited for, turned to complete shit within the first 15 minutes of our meeting. !warning – unorganized rant ahead!
*I’m not going to publicly say where we were at or the Dr.’s name (however if you email me I would be more than happy to)*
A couple of weeks ago, we took Cheeks to his first geneticist appointment here locally in Reno. We didn’t know that there was one in town so we were extremely excited when we learned we could take Cheeks to a local Dr. rather than travel out of state.
After about a months wait, our appointment finally came. I had a wide range of questions that I wanted to discuss as well as was excited to hopefully learn some new things about KS I may not have known already.
When the Dr. came into the room, her demeanor was very… bitchy is probably the real term, but to be nice we will say harsh.
She rushed through the opening of her discussion and took out a stapled pamphlet and began “teaching” us about KS…(it would be nice if I could meet a Dr. who doesn’t have to read something off to me that I have already read)…. anyways – as she was rush reading through the paper, she stopped at a point where it talked about Tip of the Tongue phenomenon (you know that moment when you are trying to think of a word and its right at the tip of your tongue and you can’t figure it out?). She said that boys with KS struggle with this on a different level and that Cheeks will more than likely have this happen.
I thought to myself as she was talking, Cool… we will work on it – *cut off by Dr * “So your son is either going to internalize this and not make any friends, or he will become aggressive and you will have a lot of issues.”……… ok… waiting for the third option…… nothing…. blank stares… Me: “Well he has been doing pretty good right now and we are really working on trying to alleviate some of these issues -” Her: “Well he is only two.. once he hits about 5 everything goes down hill.”………………………What? I mean shit lady, lets throw another fucking black cloud on an already stressful situation.. You could have said something positive here. Fuck.
So she goes on talking more about unless information and categorizing my son into different groups… and at this point my anger thermometer is just sllllooooowwwwlllyyy growing… and then the mother load of stupid fucking comments came.
“OH.. and your son will more than likely not go to college.. KS men don’t go to college..” UM…. EXCUSE ME? “…..But its ok though..” (she can OBVIOUSLY see my face of pure explosion at this point).. “Blue collar work is fine too..”……Ok bitch… ok.. and I’m done. Not only was I extremely offended, but I just couldn’t fathom that something so ignorant, stupid, and insensitive was coming out of her mouth. And if you’re reading that and you think, awe thats not too bad… add a condescending and degrading tone on it and then re read. I. Was. PISSED.
So now that this main story (and trust me this isn’t even the whole appointment.. many more things happened), let’s discuss how I am feeling about all of this.
First of all.. I cannot wrap my head around how this woman was hired at a special needs facility. She was harsh, aggressive, insensitive, and honestly I didn’t think she knew as much about KS as she lead on. I don’t say that because the bullshit that ensued at our meeting, but supposedly she had a large amount of clients with KS and also extensive amounts of knowledge.. yet still read everything from a pamphlet..and any time I had a question, she read her answer from the papers.. I call bullshit on that. Personal opinion and not fact.. but my gut tells me bullshit.
Second, give us a little bit of fucking hope man. I left the meeting in tears because I felt that the whole thing was just her saying that your son is not going to succeed and this and that. You don’t even know my son.. you don’t know us.. I felt no hope… no positive.. and scared.
Listen, I am ok with hearing information that maybe I didn’t want to hear.. I’m ok with that. But KS is NOT a disease. There is a wide range of symptoms he COULD have.. not WILL have.. so there is a very large possibility that the things she listed will not happen. THAT and we found out when Cheeks was so young.. there is a lot of early prevention that we are blessed that we can start now.
Third, I absolutely FUCKING HATE when I feel like another fucking number at the DMV. All I want is a Dr. to sit down and TALK to me. Not spout off some random information that is easily accessible online and then make me feel stupid when I have legitimate questions about development and future planning. We need for Dr.s to help support us… not make us feel incompetent.
Needless to say – if you haven’t gotten the vibe already – we will not be seeing said Dr. again, and have plans to in fact travel outside of the state to hopefully get a better plan on the future to come.
Cheeks has been developing SOO wonderfully and we want to keep this momentum going!
I am finally back from about 6 months of a break due to hectic schedule! I have a LOT to talk about and cannot wait to kick it off with another blog with more updates on little cheeks and his Klinefelters Syndrome. We have had much progress, disappointment, and high hopes! Stay tuned!