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!
Halloween is our favorite time of year. We love decorating the house and getting watching movies.. it’s our Christmas. Last year was tough because I just had Cheeks and we were scrambling to get moved and situated after the birth. This year, was just as stressful, but we were able to get all dressed up, decorated, and even took Cheeks trick or treating.. which was ADORABLE! I think next year he is going to enjoy it so much more!
We also went to the pumpkin patch as a family.. of course we went last minute and the weather was just not in our favor. It sucked actually. It was stupid windy and just kind of made it miserable for all of us, but we made the most of it and Cheeks really enjoyed the hay ride. We will definitely be doing that again!
I think a fear in every mom’s mind is something to be “wrong” with their child. Regardless of the outcomes, that amount of love we feel for our child will never leave our hearts; if anything its enhanced.
I was struck with the fear chord a week and a half ago when I found out that my son has been diagnosed with Klinefelter Syndrome. KS is caused by the gain of genetic material – a whole X chromosome. Basically normal boys have a XY chromosome Aiden has a XXY.
Hearing my Dr. sadly say, “I’m so so sorry I have to give you this news… are you ok?” was an angry shock to me….. BITCH. NO IM NOT OK! I DON’T KNOW WHAT YOU’RE TALKING ABOUT! WHAT THE FUUUUUCK IS KLINEFELTER SYNDROME?! IS MY SON OK? WHY ARE YOU SO FUCKING SAD LOOKING RIGHT NOW LIKE YOU FEEL SORRY FOR ME?
So the Dr. gives me a one pager on KS….not exactly the best one she could have given me (I might actually put in a request for a more sensitive one).
Let’s run down the list of symptoms as per the one pager and Kayla’s thought process while reading:
- Tall in height (ok… cool Mr. Cheeks will be tall and handsome!)
- Smaller Testicles… (eh. That’s fine)
- Infertile (well that fucking blows… but it’s doable.. not the end of the world)
- **in all caps on the paper** MENTAL RETARDATION (……..ummmm..)
- Severe learning disabilities, social difficulties/withdrawal, intellectual disabilities, speech and language delay, neurodevelopmental disorders (……ummmm soooo what are you saying here….)
At this point I was just so in shock I didn’t have any questions for her. Instead I went to Google when I got home.
The one thing that pisses me off beyond belief is that there is hardly any websites that fully go into the real parts of KS. Websites only have the general info I stated above. The problem with this is that it’s so fucking vague! For instance, I know that Aiden does not suffer mental retardation, but as for the other disabilities listed, what exactly does that look like? What typically happens in this case? What do we normally see happen? Are we talking he is going to have trouble with math or are we talking he is not going to be able to comprehend the universe around him? These are things I need to know and Google is not giving me any fucking answers!
After I contemplated for a good 2 hours if I should write a very frustrated and mean letter to Google, I took to facebook, my home away from home and found some private groups of parents with boys who have KS. This was good… and bad. I learned a lot going onto those groups and realized why it is that really just don’t like people.. A. I can’t believe how negative people can be about things. B. I learned that many (and my many I mean the majority of the parents on this site) boys that have KS also have some form of autism.. normally not super severe. C. There was almost TOO much information about their lives and negative experiences… which started to overwhelm me to the point of stress related sickness. However, it did lead me to look on some autism websites – which actually had the BEST and most information about Klinefelter syndrome. The sites also made it not seem so scary, which was helpful.
Automatically my mind goes into a worried mamma bear freak out and I just panic.. What if he has autism? What do I need to do to help him? Blah blah blah you know the drill. The fear of unknown just kills me. Unknown information, unknown future, unknown feelings! And then with my previous postpartum anxiety crisis we wrote about early, I just want to explode.
To answer what is on everyone’s mind at this point.. is Aiden autistic? I can’t tell you right now.. I don’t know. We will have to wait and see. I would like to say right away absolutely not, but there is a chance and the probability is higher because of his diagnosis, but we cannot get him tested until he is about 1… which is all honestly, I will probably get done regardless if he is showing signs or not.
Is he showing signs? He’s a baby – he excels in this and then doesn’t in that.. babies do weird shit at this age. I will admit there are some things he does that are questionable, but I would have never questioned them at this point had I not found all of this out.. I can’t keep looking for things that aren’t there. What I can, and will do is keep the signs in the back of my head. If he ends up showing autistic signs, I want to get it handled ASAP. Sooner the better for treatment.
All in all.. it has been a really hard week and a half for me.. My control issues and a “fix-it” mentality as my dad says is getting in my way. I think the thing that kills me the most is that I just don’t know and I don’t know how to prepare. Which is like every child I know.. but it’s harder when you know the probability with your child. The few people who I have told about this just don’t understand the feelings that I have… a common response is that ‘any child can have autism’…and I get it, but when you see that the majority of boys with KS have autism…it’s hard to shut that off and ignore. It’s really hard to explain, but I’m sure some of you know what I am talking about. SO – after last Tuesdays almost nervous breakdown from stress illness, I have decided to shut off my brain and let it go for now. I have to be strong for not only my son, but for Brandon. We cannot live in fear, dwell on what could happen, and definitely not try and make it into something that it isn’t before we know for sure. We have to enjoy these baby years because they are not going to last that much longer! I have to keep my PMA up!
To wrap this up first I would like to apologize with how all over the place this post is.
I will start a small segment with him called ‘XXY Super Cheeks’ with updates on his testosterone therapy, development, and everything else for my readers who are dealing with this same thing. This is going to be an interesting ride and I hope that you all send positive prayers and vibes our way.
^^best sites I found for explaining Klinefelters^^
PS – He was tested for this because of being born with a smaller then normal penis. They were testing his testosterone levels, estrogen levels, t4, and sex chromosome. 😀
If anyone reading this has any hands on experience with Klinesfelter Syndrome I would love love to hear from you and get feedback and hear your stories and tips! You can either message below or message me at firstname.lastname@example.org.