#klinefelter's

[klinefeltersdenver-blog]

WHAT IS YOUR FAVORITE INANIMATE OBJECT?

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[klinefeltersdenver-blog]

So, what now?

It's been an interesting journey, to sort of just sit with the knowledge imparted to me through the KS&A conference...

Here is what I know: Down's Syndrome's prevalence is 1 in 800 to 1 in 1,000 births. Klinefelter's is 1 in 500 to 1 in 1,000. Everyone knows there are no physical characteristics that easily identify a boy with xxy.

But even though the hit a human body takes from KS is not as severe as with Down's, the body still takes a hit.

How do I get Sam's teachers to really GET that Sam has circumstances, needs, a point of view and a way of processing that are NOT like little Johnny or little Sally? How do I approach Sam, knowing now what I heretofore understood obviously pretty poorly?

How does Sam get the best chance of a happy, meaningful and rich life, one in which he finds and receives love, and where he can make meaningful contributions to himself, his loved ones, his community, and successive generations?

How do I change, or do I change, my approach with Sam so that he gets the best shot at life?

Aren't these the questions what all parents ask themselves? My nephews have a mom who frets over these same issues, and they're both honors students.

Today I keep coming back to the idea of pride. Sam was born this way. And as it turns out, so are a lot of boys. Head-bobbing was universal at the conference when a parent talked about her son being particularly aware of others' emotional states... these kids are born with an uncanny sensitivity to others. And yet, they are also born with difficulty in expressing themselves.

Imagine being a kid who can sense others' fields, auras, emotional states, and yet having limited vocabulary, and limited means of expressing oneself, not only due to vocabulary issues but just generally not being very verbal.

It would make me anxious, frustrated, scared and exhausted.

Now, I know that there is a spectrum of expression of xxy, and some kids just putt along without much notice. But the men I heard discussing what it was like for them growing up confirm that it can be tough for them to interface with others.

Is it better to know or not to know? It wouldn't be a question worth disucussing if there were noticeable features to the syndrome. But there aren't. The diagnosis can be hidden from the child (HA!!!) and from others.

We humans know when something makes us different than the people around us.

But I really don't have an answer about what comes next.

I know that the people who have been so good to us at Advocacy Denver and Denver Public Schools are willing not only to lead a support group session, but they are willing to learn as much as I can provide on xxy.

That's a good place to start.

Dammit, I wish I had the ability to just call up a parent and talk. I did get a couple of names and numbers, and that's also a good place to start.

I feel distressed and sad about it all today. I feel great passion and drive to get the word out to others, but what exactly is the word?!

I am just jangled today. I think hanging out with Sam would help a whole lot, but I don't see him until Thursday evening. I need to hug him, tell him how proud I am of him, and look into his eyes with my whole heart.

I love my kid. I love him so much. I don't want the world to be mean to him. I want him to have a happy life.

But isn't it true that "the world" is just a series of individual people, and "a life" is merely a series of days, hours, moments.

All I can do is help my kid by listening to him, loving him, encouraging him, and helping those who are on a "need to know" basis have all the information they can handle about the syndrome.

The pizza guy doesn't need to know. But for me, as a mom of a 10 year old, his grandpa and aunt and cousins, his doctors, and his teachers need to know. That's it for now.

So educating others, OK, I can do that, and supporting Sam, loving him, well, I've got that one covered. Is there anything else I really can do?

For today, this month, this school year, it seems like enough.....

For now.

[klinefeltersdenver-blog]

As School Approaches....

AS SCHOOL APPROACHES...

Go to www.klinefeltersyndrome.org. This is a wonderful gateway to great infomation. The “KS Story” is available there.

You can also just google ”The KS Story: You are Not Alone” and you will find an 8mb pdf and will come to the above link. Reading this 88 page book written by an adult with KS is exciting, because it culls personal information, very good research, and TONS of links to great info.

There is a GUIDE FOR TEACHERS under the Education tab of a uk site that is really amazing… Sorry i can’t find this website at the moment, but when I do I’ll let you know.

I got ARC Advocacy Denver involved last year when my son fell behind 2 benchmark tests, and this info wasn’t given to me for 3 months (!!!). I also got the Denver Public School’s Special Ed liason involved. That was a BIG IEP. The school stepped up to the plate once I realized that once again Sam had been left behind, even with all the intervention he is delivered.

I will be getting Sam over to Children’s for an assessment with Dr. Boada, and really want Sam to participate in the neuropsych battery, but until United Healthcare gives us a special dispensation, or I find $2,000 under the couch cushion, that is further down the line. I think Boada’s eval is covered under Sam’s KS diagnosis.

I made calls to Advocacy Denver (General line is 303-831-7733, and you may have to wait a few days to get to the right person) and to the DPS liason office (General line is 720-423-3054 - call and let them know your situation and they’ll direct you to the right person) today… Sam’s IEP is usually about 3 weeks after school has been underway. After this conference I feel more able to advocate for Sam, and want to pass on to anyone reading the things that I think will help Sam the most this year. This uk teacher’s guide is one of them.

Well, that’s it for now, I guess. You can shoot me an email at [email protected] or [email protected]. I am hoping others will join us in the park next Tuesday, August 9, at 6pm at ROSAMOND PARK in Denver (Hampden & Tamarac) at the playset/jungle gym.

[klinefeltersdenver-blog]

Let's meet before school starts

I suggest that all interested just meet up at Rosamond park at the jungle gym Tuesday, August 9 at 6pm!

It'll give us a chance to meet, maybe talk about our impressions of all the info we got at the conference, and share our plans, concerns, etc about school starting.

Please let me know if you can make it, but don't stress over it. We'll be there, and if no one can make it, that's OK, we'll have had a nice early-evening in the park!

Rosamond park is in Denver, about a mile south of Hampden on Tamarac.

Reply here if you need directions, have ideas, etc.

Awesome conference, amazing parents, outstanding Klinefelters folks, such caring professionals. These are amazing times we live in!

[klinefeltersdenver-blog]

We Are Blessed

Am attending last day of KS&A annual conference. I want to make the support and solidarity we have all experienced here to keep going. Come here for more info! 

[theworldsgotmedizzyagain]

I watched this movie, XXY last night, and it was really amazing. (It's on Netflix watch instantly!) It's in Spanish, with English subtitles of course. It's about a 15 year old intersex individual learning to understand and live with Klinefelter's Syndrome. (XXY 23rd chromosomes instead of XX or XY.) I've heard this is a pretty accurate portrayal of what intersex people go through, and I felt that it really opened my eyes to a struggle that I've studied, but that I'm unfamiliar with on a personal level. I definitely recommend it!