IMG_7691

In honor of May being “X and Y Chromosome Variation Month”, I thought I’d kick off my first blog post on May 1st. Well, you can see that didn’t happen. I have good intentions but like with so many things in life, I have one idea or activity and another pops up and another and another and the thing that I had started with doesn’t seem so important anymore, or if it does, it gets put behind those that are important to others.  And that’s okay – I’m a mom. That’s our role, right? To put others’ needs before our own. I’m a mom of a 15-year old with Klinefelter Syndrome – a chromosome disorder in which boys receive an extra copy of the “X” chromosome. I’ll talk more about this in later posts, but for now I’ll give you a typical morning in our house.

This morning I watched as Ben struggled to get out of bed for 8:30 a.m. baseball practice.  After reminding him to put on deodorant (twice), brush his teeth (twice), and gather his things for practice, I heard Brandon encourage him again to ride his bike to practice, which was only a few blocks away. As I watched them pull out of the driveway a few moments later, I realized that Ben was due for his testosterone shot so he was not only low on energy but having us ask him to ride his bike to practice was really similar to us asking him to climb Mount Everest. And it would be no surprise to me if he didn’t brush his teeth or put on deodorant either. It was also no surprise to me that they had to pull back into the driveway for Ben to get his forgotten glove.

When he came home a few hours later, Ben went directly downstairs, sat on a pile of folded laundry, and turned on the TV – without saying a word to either of us. Brandon gave me the look and asked me to talk to him. I assured him that Ben was fine but made my way downstairs.  When Ben is in one of his moods, it’s best to tread lightly.

“How was practice?” I said, as I started refolding the laundry that he had knocked onto the floor.

“Gghh.” (This means good.)

“The weather is great. Why don’t you go outside and ride your bike or kick the ball around?”

“Gghh.” (This also means no thanks, I’m good.)

“Did you realize that you knocked all of the folded laundry onto the floor? Why don’t you pick it up while you’re sitting here watching TV?”

You can guess what his response was to that. This is often how our conversations go. Although Ben is a guy of very few words, he has come so far with his communication skills. At one time, he wouldn’t talk to us at all – he would use anger, tears, and violence. Then when he got older he used art. Then came texting. Now he uses words and sometimes even humor and sarcasm. The other day I told him it was “Hug Your Mom Day” and he reluctantly gave me the BEST hug. He later came upstairs and said “Mom, I googled that and it is NOT Hug Your Mom Day!” I’m still laughing about that one!

Having a child with Klinefelter Syndrome can be challenging, frustrating, and on some days, disheartening – but it can also be rewarding, amazing, wonderful, and fulfilling. Our experiences with 47XXY have been so unique and I just want to share them with anyone who wants to read about them in hopes we can spread awareness, education, and just real life experience – so enjoy the blog. This is KSMom! Kansas Mom, Klinefelter Syndrome Mom, or just Kinda Sassy Mom.

Advertisements

14 thoughts on “Just a KS Mom

Add yours

  1. Thanks for your story. I’m sure there are a lot of XXY mom’s and dad’s that can relate to this. Our XXY son is 32 and I can remember lots of times like you described when he was younger. Are you on the AXYS XXY Klinefelter Global Support Facebook group?

    Like

    1. Hi! Yes I am! In fact, I have started the AXYS Midwest Support Group (FB page thanks to Sandy) and meeting for Midwest states which will be held on Sunday, June 5th at 1:00 at Lawrence Memorial Hospital. I think AXYS does amazing things! I hope this blog is just one more way to spread awareness. 🙂 – Julie

      Like

      1. Thanks, Julie. Glad to hear you’re already involved with the other FB groups and excited that you are starting a Midwest Support group. I had tried to do this in Omaha several years ago and just couldn’t get a consistent response from enough people. Hopefully you can develop a nucleus of interested people that will remain involved. Let us know what we can do to help. And if the first meeting goes well and you sense it will continue, send your details and contact information for the group to me and we will get them added to the AXYS website page that lists the support groups around the country:

        http://www.genetic.org/Support/SupportGroups.aspx

        Good luck!

        Like

  2. I love this so much…even though my son is not XXY, but another X chromosome variation, I find so many similarities in Ben and Tayber. The walking on eggs shells is still where we are at 😊 And that’s ok with me. I love that you get Tayber and understand the challenges. For one short hour I can let down my guard and don’t need to constantly explain him to you ❤️ Can’t wait to read more.

    Like

  3. I am the 65 year old sister of a 62 year old KS brother. His challenges are tremendous. There was no community support. Most social service agencies have not even heard of KS. Fortunately, my parents were very supportive. My brother lived with them until their last days. Since then, he has lived on his own but with my woeful oversight.

    Right now things are coming to a head as my brother is very angry and I don’t know where to turn for help. That is why I am searching the internet and how I found this blog. We are originally from Minnesota but are currently living on the Central California coast.

    I am hoping to find an advocate, social worker or psychologist who can help. Someone familiar with Klinefelter’s Syndrome.

    Has anyone else had success?

    Like

    1. Hi Eve. Thank you for sharing your story. I can imagine the many emotions that come with being your brother’s primary advocate. Now that we are in Minnesota, we’ve had to find new providers for Ben without much guidance. Did you see the California support group listed on http://www.genetic.org? Perhaps someone in that group may be able to guide you to local contacts. We have a Facebook support group at AXYS Twin Cities and one at AXYS Midwest. I would join what you can and maybe someone has some great insight! https://genetic.org/im-parent-affected-child/support-groups/
      For now, hang in there. Your brother is lucky to have you. I know my son doesn’t always show it, but deep down, I think he appreciates us being there for him. 🙂

      Like

  4. Dear KSMOM,

    We too live in Minnesota, having moved here from Alaska which had no real KS support. Our son is now 12, and we have come a long way in 3 years, having moved here 5 years ago. We have a network that is based in St. Cloud, with trips to the Children’s Hospital in Minneapolis to see his Pediatric Endocrinologist. We just finished participating in 2 clinical trials through the Denver Children’s Hospital, and continue to seek education on his challenges. We do expect to join the Bethesda Brain MRI XXY study sometime this summer, to see if we learn something new from that. We shifted our son to on-line home school 2 1/2 years ago, and it has been rewarding and challenging at times.

    We plan to attend the AXYS Family Conference in Aurora, CO, June 24-25. We will likely go by RV, and combine it with some sightseeing.

    I hope you have been able to develop your medical support network, and if not, let me know. As one KS mom to another, we likely have much in common.

    Like

  5. Hi! I have a 16 year old son with KS and he is really lonely. I was wondering if you live near Minneapolis, MN and would be interested in getting our boys together? It can be really hard having a son with Klinefelters and I think he really feels alone.

    Like

    1. Hi Melissa. Good to hear there are other families in the area. 🙂 Are you on the AXYS Twin Cities Facebook Support Group site? If not, you should join — I’ll look for you! We are in the Eden Prairie area. We just had a support group meeting last month and plan to meet again in February. I made Ben come for a bit. It would be a good time to meet up!

      Like

      1. I am so happy to hear from you. I am going to join the support group on Facebook. I looked for groups years ago and did not find anything. We found out our son, Jake, had KS when he was 6 weeks old through a blood test. It has been a very lonely journey. I sought out groups but at that time I did not find any. How old is your son now? Would you ever want to get together for coffee or whatever? I live near Southdale Mall. I definitely am interested in coming to the next support group. Thank you for responding so quickly. I also have an 18 year old son and a 13 year old daughter. Have a wonderful holiday season! Melissa

        Like

      2. Would love to get together!! Shoot me an email if you have time! It’s jurbanslp@yahoo.com. My son Ben is now 17 – will be 18 in May. I have a 15 year old daughter and a 9 year old daughter too. Ben was diagnosed at age 12. Would love to have coffee and share stories. 🙂

        Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Blog at WordPress.com.

Up ↑

%d bloggers like this: