Radio Interview at Ben FM

I can't believe I haven't blogged this yet.  I had such a great time doing this with the wonderful people from Suburban Research who ran the STX209 clinical trial that Matty participated in.

I felt so empowered and I would love to do it more! 

My friend Cara put this on her FB page today

If the average child stares at someone who is different from them & the parent says, "it's not polite to stare"-- that parent is not seeing the larger picture.

Their intentions may be good, but this is an inadequate way to teach your child acceptance. Regardless if your child is a kid or an adult, you are the parent.

Acceptance begins with you.

In the same respect, if you’re an older sibling or cousin…think of who is looking up to you. What are they really seeing?

You owe it to the younger generation to take responsibility, to allow them to understand that this universe is made up of all kinds of different people. They can learn from you, more than anyone else in their life, that differences are not only OK but they're a normal part of existence.


I can't think of anything else that needs to be said today....let's all try to keep this in our minds....and not just because it's the holidays, because we are all human beings, how about that?

A moment to spare........

I have so much blogging to do, I will never finish!

Just got the Blogger app for my iPad. This, may motivate me to blog again!

Things are really good in my little world. There is a LOT to be grateful for.

Boys are great, that's what matters most. Been speaking to many newly dx Fragile X families. I feel for the newly diagnosed. I walked in their shoes, 12 years ago.

I'm thrilled to be able to give back a little!

Attaching a picture from my favorite Summer 2011 memory, since Fall started already!

More soon.......

Paula

Is it really ONLY February?

I do realize that February just started...my milestone is A's birthday which is the 5th..but honestly, I'm so done with the post holidays blues, this horrific winter we're having and just things happening in my life in general.
Last night we got to forget about things for a while....we went out to a wonderful dinner with very dear friends, and then we went to see "The Fighter." If you haven't seen it, it's a great film.
I was going to try to be better about blogging in 2011...not sure why it still escapes me so frequently.
I was thinking that putting things "out there" would make me feel better and make it easier to move on when things get me down. Now, I'm thinking just the opposite...that it makes me dwell on things longer when I write them down.
That said, I'm so thrilled with the boys. They don't suffer any of the post holiday blues...life just continues for them. Matty is thriving in school, getting really good grades, for the first time ever, enjoying being a middle school student with a hectic schedule that includes afterschool activities. Benjamin is a constant scheduler and needs to know and update you on not only his own schedule, but Matty's Dad's and mine too. He makes me laugh...such a happy little boy. He's also doing beautifully in school, and I couldn't be happier with the way he's developing.
I'm working on our family newsletter, as I prepare to go to Washington DC for the National Fragile X Foundation's Advocacy Day 2011 in March. I realize that we do so many things in any given year, and while our children's progress might not be measured the same way as most, we're still making huge strides each year. We took these boys to Italy last summer for 2 weeks...where they didn't speak the language or understand the culture, and they loved it and had such a wonderful time and are both still talking about it.
I love that they amaze me everyday...right now I'm watching Ben have a football catch with his dad in the foyer....while I want to be all "Don't play ball in the house"...I remember when Ben couldn't hold the football, let alone throw it at all, forget that his accuracy is great these days ( well, and the football is a Nerf).
Matthew wanted his dad to have a NY Jets cake for his birthday....his rationale and this thought process is still maturing, something I worry about all the time, as I've read that boys with Fragile X reach an intellectual plateau in puberty. I will fight that with every ounce of my being, and I will continue to push him and stay on him as that's the only way he continues to grow.
Well....funny....I feel much better now than when I started this...it's a beautiful day here in NJ...considering there's a few feet of ice on the ground, and it's still cold...but so what? We're taking the boys to their basketball games in a few hours...it's going to be a great family day!

#keepitpositive

So, I Twitter. I love it, though in my limited technical savvy, I doubt I understand all there is to about Twitter. Of course, I have 2 accounts. One for Fragile X (FXNJ) and one for everything else (paulafasciano). My catch-all Twitter account follows news outlets, every cosmetic and beauty related product/manufacturer/blogger out there, working out,celebrities.

I love Twitter....I have to say. It's short and sweet and a great way to share a TON of information to a TON of people. I have tried TweetDeck and Seesmic, but I'm simple, so I prefer twitter.com.

It has helped me spread the word about Fragile X (I use #fragilex) when I tweet about it when I can. It's such a powerful medium.

Twitter measures topics that trend by the number of people who tweet with certain "hash tags" in their tweets.

One trending topic I noticed today was "keepitpositive. Seems like a good idea to promote a phrase with a good message.

I also learned a new word today, on Twitter, thanks to Lisa Rinna (I KNOW, but she tweets cool links). "Wasband" is that guy you WERE married to...your ex-husband.....was-band....I completely LOL at that one today....and with kids and husband home for a snow day, I needed a LOL by about 3pm!

That's all I got today....remember, I'm trying to #keepitpositive!

Happy Thanksgiving!

You know, sometimes I have a hard time being grateful.
Yes, my life is very blessed.
But.....
Sometimes I think I look at Holidays different than some people. Don't get me wrong, I love a Holiday. It's just that for some reason, it's those times of year that it really resonates that my children, well, their not regular children.
I want to be grateful, really I do. For example, I had the luxury of working from home today ( OK, I do that 3 out of 4 workdays a week), my kids had half a day, we had lunch together, hung out together this afternoon playing the Wii. No cooking here, we travel instead for Grandma and Grandpa's house.
My husband (bless his soul) called to say he'd be home in time to take M to his orthodontist appointment, so I wouldn't have to do that. He comes home and takes BOTH kids with him, so that I can relax. OMG....that's a gift in an of itself!
So, as you can see, my life, is charming...for the most part.
It's just that Holidays make it more obvious that my children are different. It's almost heartbreaking ( for me) to celebrate Christmas. It's not that they don't enjoy it, they do. Their excitement is almost contagious! I think that for me, it's a reminder of the things that won't ever be "normal."
I think for Christmas, I'm going to try to give myself the gift of "being OK with how things turned out" and to not wallow in self-pity.
Happy Turkey!

Halloween....not so much for me, thanks!

So, Halloween in my house is a bit of an anomaly.

I have two boys who are so excited to decorate, make the house all about Halloween, but would rather not trick or treat. They both enjoy wearing costumes ( which is something I know some of my FX sisters struggle with). They are very excited about the "idea" of Halloween.

But, the act of having to go up to someones door (in some cases, people in your neighborhood you don't know) and knock and say "trick or treat" and get candy AND say "thank-you"...... well, when M was little, he'd throw-up at the idea of having to do that...the anxiety would render him immobile. Then, once he was able to do it (remember, I "refuse" to give in to this FX, and let it win. Sometimes, this is super foolish on my part, as somethings are out of my control) he would go to a house or 2 and want to come home.

Well, this morning, he started with "I think I'll stay home and give out the candy." A+ for creativity and for effort....clever enough to try to get out of doing something you don't want to do...no dice though, you're putting that costume on and trick or treating, like it or not....

Which brings me to my point....why am I insisting that my kids "LOVE" Halloween? Really, who cares? It's so not important.

So, I spent some of today being disappointed in myself...

But, both boys went out and trick or treated, with minimal interference from me. I waited on the sidewalk for them at each house. M would lead the way, B would follow. B, being the social creature he is...at each house he tells the candy giver "And that's my mom, Paula" as he points to me on the sidewalk....he's precious!

We covered about 30 homes....we were out maybe an hour...it was enough....we had a better time giving out the candy once we got home!

It was a huge accomplishment....I think about M and the throwing up and the crying, and I realize how far he's come and I'm so proud of them both!