Clouds, May 2010

Clouds, May 2010

Tuesday, February 28, 2017

a thank you from one of your constituents

Hello and Welcome! I am so glad we had a chance to meet.
If you're visiting my blog that means you received one of these flyers when we spoke on Wednesday, March 1, 2017:

There were eleven of us from NJ this year, representing seven different families. Our group on Wednesday included parents, a grandparent, self-advocates, as well as siblings.

We left behind a folder with specific information about why we met with you. Here is a link with electronic copies of our "asks":

Included in our face-to-face communication with you, we also spoke about upcoming legislation which will help the ABLE Accounts to appropriately support the very people the ABLE Act is intended to protect.
These amendments will include:

The ABLE to Work Act
Allows ABLE account holders who work and earn to save more than the current limit of $14,000
The ABLE Financial Planning Act
Allows 529 accounts to be rolled over into ABLE accounts, when such college savings can not be used for their original purpose
The ABLE Age Adjustment Act 
Enables more individuals who become disabled later in life to take advantage of the benefits of the ABLE accounts 

Pictured above, my personal leave-behind flyer tells a little bit about my family, where we're from, as well as a brief description of fragile x and the NFXF annual Advocacy Day.

I hope you visit this page once in a while to learn about our journey with our son Hayden.

See you soon & stay tuned... the next important update is always just around the corner 


Tuesday, February 21, 2017

new chapter

No doubt members of the fragile x community will look at the title of this post & think it means one thing, when actually I'm updating about another. Just a bizarre coincidence that we are experiencing so many changes in our lives at the moment. For right now I just wanted to share that I am glad I was able to attend at least part of the meet & greet with the incoming LPS Principal this evening. I have only met him briefly, twice, but I think he seems like a good match for the middle school. I also stayed for the beginning of the BOE meeting that followed, & next up the well-deserved recipients of the Governor's Educator of the Year Awards were acknowledged. One of the recipients from the elementary school is someone that we've known since H's first year in this school district. Both recipients from the middle school are familiar to Hayden as well, & one of them actually worked directly with him for the first part of the year. Another tribute that all were looking forward to immediately followed, to honor our recently retired Principal. For anyone who couldn't be there, the Board President's speech was genuinely felt by our former Principal & I believe the room as a whole. His family was there to see him recognized & he was honored with several standing ovations. On a personal note, it's my understanding in the short amount of time that my son knew the principal, they developed quite a bond. I remember when I saw him at the PTA Craft Fair back in the fall, he told me he hardly expected to develop such a relationship with any student this late in his career. The sentiment was better than my recap is, but he essentially said that getting to know my son added much value to his day. He said that Hayden's smile could fill a room with joy & that the love inside of him is an inspiration to others. I am confident other parents of children with special needs would concur, that the mutual positive impact is just incredible when your child is truly understood. Despite the Principal's retirement being somewhat sooner than expected, I wish him happiness & the best of health as he plans ahead. My wish for the incoming Principal is a mutually comfortable relationship with the district moving forward. There are countless kids & so many faculty members who will always have a special place in our hearts, & I know Hayden has a special place in theirs. They all deserve nothing less than the best. --