Clouds, May 2010

Clouds, May 2010

Thursday, January 19, 2012


kids, counselors, sports, and swimming
anxiety, strangers, meltdowns, and pull-ups

I started researching summer programs for H. Previously, his summers consisted primarily of an ESY program in July (summer school for special ed students), followed by an ever-changing schedule of home therapies during August, some afternoons at daycare, and a couple of baby sitters in between. We get through however we have to... between the aforementioned, wiggling my husband's schedule, wiggling my schedule, and grandma's help.

So even though H is still age-eligible for summer program at the daycare, I knew it was time to find something feasible not only following ESY, but for the future as well.

One of the local camps I inquired with, gave me the name of another one nearby that might be able to accommodate Hayden. Two general applications and many teacher & therapist forms later, I finally scheduled a time to take a tour of the camp.

Even with the bare trees, piles of brown leaves, empty swimming pools, and different buildings boarded up for winter, I could see through and imagine the scene on a sunny day filled with children. I got a good feel for the place when we started to walk through.

Yet, my special needs radar was periodically blinking in my mind...

Oh, this is where I would drop him off? in between the buses and everyone else being dropped off?

The campers put their backpacks on that field over there? What if the ground is wet & muddy?

So this is where the morning gathering is? I see. So the children that are Hayden's age would be sitting over there? Ok. At that hour, facing that direction, the sun would be in their faces and he doesn't keep sunglasses on.

When they pick up their backpacks and head towards the junior village cabins, that is certainly some uneven terrain.

I know it should be fine if that's the way they've always done things, and there are structures with roofs, and he will wear a hat, and someone will hold his hand when they need to...

But it's my little guy going to a big camp and he has toileting issues, and someone who doesn't know him may not understand his speech, and he won't communicate when he's too hot, and he may not accept help if he trips and scrapes his knee, and we have to figure out the shadow counselor or someone to sort of help him through his days there, and the place is unfamiliar, and there's only so much I can explain ahead of time that he'll understand.

I get the flip side-- the 'what if' I don't expose him to these things. Then what? 

However, must be nice though when you can just sign your kid up for camp. Period. 

Monday, January 16, 2012

toward$ a cure

The other day I was waiting on line at a $5-or-less store, appropriately named Five Below, to purchase a stylus pen for H's iPad. Actually it was two pens because I am already planning on one of them getting lost.

I noticed a sign above the registers about raising money for schools, so I asked the cashier about it and learned this can also benefit an organization. She pointed me in the direction of the manager, and within minutes I set up an early-spring fundraiser for The National Fragile X Foundation.

Our confirmed time frame is March 4th through April 7th when anyone can bring in a flier to the specified Five Below location, shop, and 10% of the total purchases will be donated to the NFXF.

We are very excited over the potential money to be raised! The manager said during the weeks leading up to Easter people tend to shop there for basket fillers, and seasonally it's also a popular time when customers often purchase party favors.

The last major effort we put towards fundraising was in 2010 via Hayden's First Giving page. The NFXF was celebrating their 25th Anniversary, and approximately 30 families created fundraiser pages through The NFXF promoted $25 for 25 years, and proceeds from the campaign were going towards an early diagnosis initiative.

We set a starting goal of $1,000.00 We were meeting that much quicker than anticipated, and happily increased it to $2,000.00. At the conclusion of the $25 for 25 Fundraiser, Hayden's page had raised more than $3,000.00! It was the most amount raised from the entire campaign!

I hope we exceed goals this time around, too!