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!

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.

Walker's Song ~ by Dylan

November 26, 2007 was a quiet night at my father's house.  We were just ready to go to be.  My father came in the room and turned on the lights "The baby was born!" He told us.  "I just got a message on my phone!" He rushed in the room with his phone, "listen" he said.  He played the message, it went like this "Hey boys, it's aunt Amy, just wanted to tell you the baby has been born, his name is Walker, he is seven pounds and you can visit him tomorrow, Love you guys. Bye"  We were so excited.  We talked about what he would look like, We finally went to sleep.  We arrived at the hospital in the morning.  I got to the second floor.  There we ran to the room. I opened the door to find my mom with the baby in her arms.  I picked him up and looked in his deep blue eyes.

Years passed.  Walker was now two years old.  He still hadn't said a word.  He hadn't sat up or crawled or even walked.  I thought it was weird because I had never heard of a two year old child who couldn't say "mommy" yet.  Mom called it autism.  I learned that it's when a child acted younger than his or hers age. It also happens with adults of all ages.  Sometimes I wonder if he will ever walk.  He must have a tough time.  Sometimes I sing to him. When I sing to him I sing "Your not perfect" by Laurie Berkner.  The song explains that you may not be perfect but people still love you if you are not.  To me, Walker is more than just a child, he's a gift.  I love my baby brother and I always will.  I will always have him in my mind and when I think of him I think of that song.  That's what music means to me.  

** This was an essay contest for music class in school.  Dylan was able to read this over the loud speaker at school.  I often worry how my other children are adjusting to the demands of having a special needs sibling.  Dylan wears his heart on his sleeve and is able to express himself so well.  I find it interesting that he calls Walker's handicap autism even though he is not. I guess this is how a nine year old makes sense of it all.  

Reflections of motherhood

Siblings of special need children carry a lot of weight in this world.  I worry constantly that all three of my children will feel responsible for the care of their brother, specifically Poo.  As a girl, our society conditions girls to love and take care of people, especially family.  I don't consider this a bad thing, I just want more for my daughter. 

For Christmas Poo received a baby doll, equipped with a bottle and a cry if she is not being fed.  At first I had mixed feelings about such a gender specific gift (although I know the giver had none of those intentions!!) I didn't really encourage her to interact with the doll.  It soon wore out its novelty and batteries.  After being stuffed in the toy shelf for the last two months, Poo found her yesterday.  She has been carrying her around and interacting with the baby quite lovingly.  What I find the most interesting is hearing my own voice come out of her!  While feeding the baby her bottle, Poo told her to "hold it yourself, you can do it!" Later she smelled the dolls butt and exclaimed "pee yewww" (lol) but what I loved most was she hugged her close to her chest and told her "I love you Stinky face".

Gender specific or not, it was nice to see a reflection of my motherhood in my little girl.

Mucus and Motrin

Mr. Mr. is sick.... again.  It seems that these last few months have been filled with mucus and Motrin.  I know I've blogged about it before, but not being able to communicate what is wrong has got to be so frustrating for him!  I know its frustrating for me!  Hence, the Motrin.  When all else fails (read: eating, sleeping, diaper, cuddling, vibrating pillow, funny noises, favorite video, songs etc) I give  him Motrin.  I figure if nothing else, whatever is hurting may feel a little better with that.  I just hate when he is sick!  I don't know one mother who enjoys it, and of course with the extra attention he needs, the other siblings get clingy and jealous.

Then I wonder if I should take him to the doctors or not.  With children that are not mobile, they worry about them getting pneumonia and they usually put him on antibiotics, which of course upsets him tummy and then he is not happy either.  So I am waiting it out.  But in the mean time, the house hold is pretty miserable, which makes for a miserable momma too!

Handicap Permit Only

Last week I went and got our handicap parking permit.  It doesn't sound like a big deal but I had struggled with the idea of putting one up in my car and actually using a handicap parking spot.  Its nothing against anyone who has one, I just felt that we weren't really worthy of having it.  Walker is only 2 1/2, and I push him in his adaptive stroller.  I am a fit and able woman, so why would I need a parking permit?

Then I remembered the day we took Walker to get his AFO's fitted and they were having a special ceremony at the school.  There were no parking spots on the school grounds, nor for three blocks up the road.  So me and my four kids walked all the way there, with no side walks.  There were however many handicap parking spots unused, but I refused to park in one without a permit. 

I also remember the day that I attempted to take all four children shopping, and the parking spots were so close together that I couldn't get out my door.  I had to crawl through the hatch back and everyone exited that way.  Its pretty tricky maneuvering a 30 lb kid while hunched over in your mini van. 

Then I remembered trying to mail a package at my local post office, with both babies in the car and no stroller.  We had rushed out the door and I will ill prepared.  So I left both kids in the car with the doors locked.  Don't worry its was in the winter and I was gone for about 5 minutes, but boy, that handicap parking spot was right out the door in clear view of the post master and it was empty!

So I filled out the paper work and got ourselves a handicap parking permit.  I don't plan on using it will malice intentions, in fact I'd be surprised if I use it at all!

Love my washing machine!

While attending SUNY New Paltz, I went to hear a lecture on the work of women throughout the world.  One of the most shocking statistics was the amount of time that women, all over the world spend getting water.  I don't remember the exact number but it was well over 80% of their time is spent walking and carrying water!

This really hit home this week with two children and a stomach virus!  In the course of three days, I gave five baths, and did 4 loads of laundry... just from the affects of this bug!

I couldn't imagine what I would do if I didn't have running water!  I know it seems like a simple thing for us Americans but I really appreciated having a bathtub and a washing machine!  I remember not too long ago, when I didn't have laundry in my house and had to take everything to a laundry mat!  With all the nasty clothes and bed sheets, I was really appreciative of that!

So, even though I had too clingy grumpy kids, I reminded myself that at least my house still didn't smell like a porta potty!  For that, I am thankful!

A peak into a siblings mind....

While cleaning out Dylan's book bag, I came across the following:

Walker is my hero for many reasons. See Walker is delayed.  Which means he can't do what he's trying to do, like walk, crawl and talk.  With him being my brother I've learned many things. Like how to help hm in many ways.  Games an other activities to play with him, but what he's really shown me is no matter who or what you are, your still a person.  Now I love Walker very much and its sad to know he may never be like me, I wish that I could help. I wish I could get the money to get him a machine to make him a normal toddler.