An alternative mom telling it like it is

Category Archives: Klinefelter’s Syndrome – My Experience

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 😀

 

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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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