Wednesday, April 25, 2012


Saving for our son's future is something that Robert and I talk about almost daily.  All parents worry about saving for college, while we worry about saving for a lifetime.  Realistically, our plans must accomodate saving for three retirements, rather than two.  This is a big pill to swallow, especially since government restraints don't allow us to save money for Jack in an easy way.  (Why, you ask?  Well, we'll get to that in a minute.)

Currently, our family's only legal option for saving for Jack's future has been to open a Special Needs Trust as a means to protect his assets from the penalization of the government.  Now, with the possibility of a new piece of legislation, we just might be able to transparently allocate our assets, without the fear that Jack will not qualify for benefits that he will need in adulthood (like Medicaid, if it's even around when he is 18). 

Because of this new important piece of legislation, I need to ask you all for a favor.

(First, a quick "thank you" to a fellow blogging Ds mommy for bringing this to my attention and for allowing me to repost her words below.)

A piece of legislation is sitting in Congress right now.  It has bipartisan support in both the House and the Senate.  It needs our voices – parents, grandparents, friends, self-advocates – to get going.  Today, April 25, has been designated as National ABLE Act Call-In Day.

The “Achieving a Better Life Experience” (ABLE) act would allow individuals with disabilities to have a savings account that can be used toward living expenses, education, medical expenses, assistive technology, job training, and other supports.

The best thing about this act? The money in this account does not count against the individual’s cash asset limits if he or she is drawing Social Security Disability Income or receiving Medicaid.

This is absolutely revolutionary.

For decades, individuals with disabilities – capable of working, wanting to work – have been forced below the poverty line due to stringent rules regulating SSDI and Medicaid. The cash asset limit in place to continue participating in these programs is an absolute joke, and essentially prevents individuals with disabilities who require Medicaid for health insurance from obtaining meaningful work for meaningful pay. Individuals whose disabilities make it difficult to work a standard 40 hour work week instead must live off SSDI, which is a poverty-level amount.

This act would make it possible for families of individuals with disabilities, and the individuals themselves, to save money in this special account so that they can live a more meaningful life of their choosing. These accounts are meant to supplement SSDI while still keeping the person eligible for Medicaid.

Here are a few more benefits of the bill:

•will be regulated at the federal level so these accounts can cross state lines without problem

•can be held in the individual’s name or in a parent’s name

•money can be used at any point in the individual’s life – does not need to wait until adulthood

•if a family has already been saving money in a traditional savings account, money can be rolled over without penalty

If you’re interested in taking action, there are a few things you can do.

First, check to see if your Representative and Senators are already sponsors of the bill. If they are, send them an email or call them to thank them for their support.

If they aren’t sponsors, send an email or give them a call. You may feel like your rep is too busy to talk to you or read your email. Rest assured that staffers are important players in this, and a conversation with a staffer is still a step in the right direction. Also, each office counts the number of “contacts” they get for or against a bill – so your voice will still be heard! If you need help wording your email or conversation, check out these talking points from the National Down Syndrome Society.

Other ideas:

•If you like to tweet, disability advocates across the country are using the hashtag: #passtheABLEact

•If you are a blogger, consider posting something about the act and rallying others to action.

•If you like to use Facebook, consider posting something about the act.

•If you are part of a parent group, support group, or other disability-related organization – send them the info.

There are a lot of different ways you can let Congress know you support this bill. Ready to take some action?

Thank you for taking the time to read this, and hopefully together we can help make some positive change for those who mean the most to us.

Friday, April 20, 2012

A little this, a little that

The months of March and April are always busy ones for our family ... multiple birthday celebrations and Easter, and then compound those with several celebrations for friends' upcoming weddings.  We've been quite busy, to say the least.

Jack has been busy these last couple months as well, fine tuning some new BIG skills.  Among many others, Jack's greatest recent accomplishment is that he is WALKING!!!!  Finally!  He's not a pro walker by any means, and still prefers to crawl about 15% of the time, but he's definitely doing it consistently.  It's so weird to be washing dishes in the kitchen and catch this little person WALKING behind be out of the corner of my eye.  I still can't believe it some days. 
The word proud doesn't even touch how we feel about this accomplishment!

I've discovered that Jack walks best while barefoot and struggles a bit when in shoes, so I've just been trying to make him wear shoes around the house to get him used to it.  So, persistent walking is a work in progress.  I wish I had a good video of him walking, which I'll try my best to capture soon because all the ones I have now are really poor quality, as they were taken with my phone.  I'll be sure to share a good video as soon as I can though!

Big boy walking
Jack has actually been walking for about 3 weeks now, but we've kinda been keeping it a secret because we wanted to surprise our PT Carrie, who we've missed the last couple of weeks due to holidays and what not. 

So Carrie, if you're reading this ... SURPRISE!!!! 
We know we have PT with you on Monday morning, but we just couldn't hold the news in any longer. 
We're just too excited!  Jack can't wait to show off his walking for you!

Our little baby boy is growing up so fast, and he looks bigger and bigger to me every day.  I can't believe he will be turning 2 years old in less than 6 weeks!  Where did the time go?!?!?  {Tear

Here are some photos of our last few weeks for those of you craving recent Jackers pics.  Like I said, we've been busy!
{Warning: Photo overload.)

We had a wonderful dinner with Kristin, Jeff and Carter to celebrate World Down Syndrome Day on March 21st.

The boys with their Daddys

Mommies and their boys

Then, we took a long weekend trip to the Outer Banks to celebrate Daddy and Uncle Chris's birthdays.

Jack with cousins Zack and Brooklyn

Going for a ride on Uncle Matt's shoulders

And as always, Easter was a wonderful day spent with family and friends.

Jack and Daddy in church on Easter

Jack with cousin Brooklyn in front of the Easter flower cross


Big boy in his Easter tie from Addison's Closet

(Rarely captured) Family pic

Jack and his biggest fan, Ci Ci

Later on Easter, we satisfied Jack's newest obsession, and played ball in the grass. 
Jack can throw AND (sometimes) even catch the ball.  This kid LOVES to play ball!

Playing ball with great-cousins (and furture babysitters) Mollie and Emma

Ball with cousin Brooklyn

Have a wonderful weekend, everyone!  Love to you all, and we'll be in touch again soon!