Wednesday, July 27, 2011

Many thanks to Independent Living!!

Walker loves being outside, and so does his brothers and sister, but previously it was difficult to always get him out.  He has two chairs that have wheels on them, but our back patio is concrete and there are two stone steps that I have to carry him down in order to get him outside with the rest of us. Not easy to do by myself. These steps are also a hazard when it comes to getting him to the bus in the morning and home again in the afternoon. They are also tricky in the winter time when the snow and ice make those steps pretty slick. 

Our social worker (who I think i've mentioned that I LOVE) suggested we build a ramp for him and went about the process to find us grant money to do so.

Thanks to the people at Independent Living.  we were able to get funding to add a deck and a ramp to the back of our house!

Ramp for Walker's chair
Last week in the blistering heat wave in NY, the crew was here and built us one beautiful and fully functional deck! The ramp is perfect to get him to the bus in the morning and the extra space is easy to have the whole family outside and enjoying the weather!

Back deck

Lots of room for everyone!

Saturday, July 23, 2011

Back on the horse!

Thanks to a Bionda, a company in the tri-state area, Walker has been given a scholarship for the summer to attend GAIT, which is a therapeutic horse riding center.

Last week was his first day back on the horse and I wasn't sure how it would go.  Last year, it took a lot of hours on the horse before he would actually not scream and be mad.  Even putting the helmet on his head would cause him to start crying. And of course, his first day back was a a humid 100 degrees! (Walker hates the heat!)

As I brought him out of the car and talked to him about seeing Patrick (the gentlest horse ever!) he began to get very excited.  He was kicking his feet and hugging me extra tight and laughing his great belly laugh!  I think he remembered where we were and what we were about to do.  When his therapist came over to get him ready he also seemed to remember her voice.  He had a great ride, laughing and vocalizing the whole time!  He was even pushing up on his arms and legs! My favorite part of the ride is when they take Walker off the back of the horse and have him say thank you to Patrick.  The horse always looks back and gives him a good sniff to acknowledge him!  Its beautiful!

It looks like this will be a great season!!  I am super excited to see how much this improves his trunk strength!

Meet Patrick!

Tuesday, July 12, 2011

The Boy in the Moon

Awhile back a friend posted something on face book concerning a new book written by a father of a disabled son, The Boy in the Moon, written by Ian Brown.  There are many books and stories out there about the trials and joys families face while dealing with their handicapped children, but this one struck a cord since the boy's name was Walker.  I ordered it from Amazon and when it arrived I put it on a shelf and waited until I was done with school to spend some quality time reading it. I have to admit, though, once it was there starring me in the face, I had some anxiety about reading it.  I wasn't sure which direction the writer was going to take and I also knew that just reading page after page with Walker's name on it would evoke some emotional responses to the text.

As I began reading the book, I was instantly struck by many similarities that the two Walkers shared, but there were also many differences.  Like many parents of children, both disabled and abled, I couldn't help but compare their milestones and the affects.  I felt like I was getting the chance to look into a crystal ball of sorts.  Something that I have not been able to do with my Walker since there is no diagnosis.  As the book developed, there was a camaraderie that I found with the writer.  Not only was this camaraderie formed with the struggles, but also the search to really understand the point of Walker's life.It brought forth questions of our value to life, and what we as a society think is true value.

This spoke volumes to me, I struggle with these thoughts daily.  One on hand, we have a society that gives us the message that disabled children are "angles among us" but on the other hand they are also considered a "burden" and  ultimately are "expensive".  How is a parent who is exhausted, financially drained, emotionally fragile and harboring deep rooted guilt issues suppposed to deduce the real affect?

When the author was contemplating this question he asked his wife (Walker's mother) how she felt:

"I don't know what Walker's value is to the world.  I'm not sure that I agree that his lasting value is to have touched people.  That his whole life has to be this fucking Gandhi thing, making people feel better about themselves.  I don't think his life should only have value because he makes other people feel more contented with their own lives.  I think his life should have value of its own."

Eventually after eleven years of struggle they put Walker into a group home.  He returns to them ever ten days and as he settles into his new community the author sets out to see what alternatives they have for him after they are deceased.

He finds an alternative community for the disabled, and travels to France to learn more about its origins.  There he stays with a home for a few days and learns a different approach to living with the disabled.  In that community everyone is the same, from the guests (which we call clients here) to the staff, they all live together, eat together and are a family.  It is religious based, but the author did not find it contemptuous.(since he labeled himself somewhat of an atheist)

One of the founding fathers of the community expresses:

"We're arrogant enough to believe that sentience is all that counts.  It's not all that counts.  A sequoia is not a sentient being. But they count.  There is nothing more magnificent.  It doesn't require me to think about it to be in awe of it. I don't want to minimize the difficulty of raising a handicapped child.  It says something about the place we have reached as a society that doing so creates a serious handicap in these contexts. But it's just a mistake to think of them as lesser than. There's no lesser than.  There's just different from.  It isn't great minds that matter. It's great spirits too"

I can only hope this is true.  As a parent, I want the best for my child regardless of his or her handicaps.