What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Thursday, March 6, 2014

Advocating for the ABLE Act

Guess where I went last week?



To Capitol Hill!  

I joined a group of advocates from all over the United States to talk to our senators and representatives about the ABLE Act.  The current version of the Achieving a Better Life Experience Act was introduced in February 2013 and would allow individuals with disabilities or their families to open a tax-sheltered savings account to pay for certain long-term expenses.  

I'm terrible about remembering to take pictures, but I visited the offices of Senator John Cornyn, Senator Ted Cruz, and Representatives Stockman, Granger and Hinojosa.  I met several other parents from Texas, and had a meeting with David Egan, an amazing self-advocate.


I even got to meet Sara Wolff, the woman with Down syndrome who has collected more than 200,000 signatures on Change.org in favor of the ABLE Act.

It was inspiring to spend a day on the Hill talking to people about the ABLE Act.  This article explains the legislation a lot better than I can, but I'll try to share how the ABLE Act will impact our family.  As the law now stands, people with disabilities are only allowed to save $2000 before they lose eligibility for needed governmental services, like Medicaid and SSI.  As a parent, this means that I can save money for Evan and Corrie under their names (for college, or a car, or whatever) but I can't save any money in Ben's name.  He's forced to remain in poverty in order to receive services.  Keep in mind, he doesn't receive any of these services now.  He's on our private insurance, and we pay a monthly co-pay for Early Intervention.

This was my message to our congressional representatives:
Ben has gifts, strengths, talents and opinions.  I have hope and confidence that he will want to participate in our community life - and that he will be a valuable member of our community.  Ben has so much to offer, and the ABLE Act will allow our family to save for his future just as we are saving for our other children.  We have high expectations for all three of our kids, and I promise that we will do our best to give all three a great start.
Over 400 members of Congress are signed on as co-sponsors of the ABLE Act.  If it came to a vote today, it would pass.  We just have to get the bill to the floor.


I was astonished by the amount of people wandering the halls of Congress to talk about different causes.  There were ladies from the Garden Club discussing environmental issues, young people addressing the need for suicide prevention, and more.  I'm grateful to live in the United States and have access to our elected officials.  Never in my wildest dreams would I have imagined that I would go to D.C. to advocate for my child and others like him.  And yet, here I am.  

This boy - and his future - are worth it!

Tuesday, February 4, 2014

Slowing Down

I have big news!  Ben is walking.  At 30 months old, he can walk confidently on his own for a good 30 steps.  Now, he is not walking full time.  His gait is wobbly.  He still opts to crawl if he's in a hurry.  And occasionally he will use his signature butt-scooting move to go a short distance.  But ... this boy can walk.

It has been a long time coming.  When he was a baby, I used to try to pull him to a stand.  He flat out refused to put any weight on his feet.  I would lift his arms to pull him up and Ben would remain in a sitting position - just sitting on air instead of letting his feet drop down to touch the floor.  He learned to roll over before he was a month old, but it took forever for him to get on all fours.  He army-crawled for months.  And then instead of crawling, he developed a silly way of scooting on his bottom. Man, was he fast!  If the kids left the garage door open while I was distracted, Ben would be in the garage, across the driveway, and halfway down the sidewalk to the neighbors' in a flash - all while scooting on his bottom.




I knew that he would learn to walk eventually.  And I didn't really mind the wait.  The scooting was funny, and when he figured out crawling, it was great to watch him motor across a room.

There were pangs, though.  Moments where I realized how hard he was working to feel comfortable on his feet, and times when I saw other little ones striding across a room while Ben sat comfortably in one spot, not ready to move or explore.

I wrestled with my expectations.  How much should I push him?

We built in a little walking and exercise time every day.  He saw (and still sees) a physical therapist once a week.  Big brother and sister called "walk to me, Ben!" as he took tentative steps from a couch to a sibling.  We laughed as he applauded himself.  A friend brought over a great walking contraption made out of PVC pipes.  Ben did laps.





What made the difference?  I'm not sure.  It could have been the tubes in his ears.  Maybe he had some balance issues that were remedied by getting tubes.  It could have just been the right time;  he was finally ready.  He got more standing toys (like this sand table), and his stamina increased.  

But I think a big part of Ben walking more now has to do with me and my willingness - finally - to slow down.  

It takes a lot of patience to hold his little hands and walk together down a sidewalk.  My back ached from bending over to hold fingers.  And honestly, I am often in a hurry.  Impatient.  I have things to do and places to go.  Life is much simpler when you can swing a baby onto your hip and tote him around.  Or stick him in a shopping cart while picking up a few items at the grocery store.  I got in the habit of carrying him everywhere because (1) he's my baby and (2) it was just plain easier.

Over the past month, I have deliberately given Ben opportunities to walk.  I have slowed myself down to walk with him from the parking lot into church.  I have let him out of the cart at the grocery store so that he can help me push.  I have left the stroller in the trunk while Ben and I mosey around the park.  

This kind of practice is fun for him even if it feels painfully slow to me.

But it has been good for both of us.  I need the reminder to slow down, to spend time on the important things, not just the urgent.  To give my attention to the significant people in my life.  To let my loved ones have a say in how we spend our time together.

And now Ben is walking.  Ironically, this is probably going to speed us up all too soon.

To see him walk, check out this video.