Friday, April 29, 2011

Catch up

Yeah, I've been a slacker not blogging or keeping anyone up to date with what is going on with Mr. Mr. some weeks it seems that everything is same old, same old, then others feel like a tornado has hit. These last few weeks have been tornadoes all around but in a good way!

We got Mr. Mr. a new gait trainer, thanks to Tyler's Gift,   I had been looking for an alternative to his stander, which he seemed to loath!  At school we discovered that he really liked the pony trainer and could actually move himself around a bit on his own. Of course, now that we have one at home, he hates it!  Its more that he is tired and doesn't really want to work, so we save it for the weekends or holidays when he isn't in school.

We also have been doing a lot of bean and macaroni play. He loves it!  I still haven't figured out how to do it in the house without making a huge mess. This is such great stimulation for him, both tactile and fine motor skills. 

Not having a diagnois for Walker we really don't know what is going on in that head of his!  So its my job to make sure that he is being stimulated every which way we can think of. But it is a fine line not to over do it either.   Sometimes he just wants to be put in his bed so he can de-compress.  This bothers some people, but I know this is what he needs.  When he comes out he is happy and smiling again!  Since his bed is in the living room, he is not isolated and can still hear all that is going on in this crazy house!!

Most excitingly is that his glasses came! They are prism glasses and the sole purpose is to reflect light to others parts of his eyes to stimulate his brain.  The actually function of his eyes are fine, but somehow the signal to his brain gets interrupted.  These help stimulate those areas more!  At first he wasn't to sure about them, but now he is wearing them all day and seems to be really checking things outs!

Doesn't he look like a little professor? 

Tuesday, April 12, 2011

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.  

Friday, April 8, 2011

Good measures

One more item to add to my to-do list is find ways to modify our home to make life a little easier taking care of Walker.  When we bought out house four years ago, we had grand plans.  We knew the space was small but were convinced by a sharkey mortgage broker that in two years we would be able to refinance and add on.  Well, like the story of many other homeowners in our country, the housing market crumbled and we were left with a tiny two bedroom house, that was not valued at the price we paid for it.  So, after trying to sell it, arguing with the mortgage company here we are back in the too small house, sleeping in the living room with Walker's crib next to us.  
I made the decision to keep us all down stairs so that I didn't have to carry him up and down the stair case several times a day.  Not only would it have been killing my back, but also dangerous in case we slipped.  We have made due with the space we have, I remind myself, that people live in much closer quarters and survive.  The other issues however, are getting him in and out of the house in his chair safely and bathing him in our current bathroom.  

Our front door is not wide enough to get his chair through and the back sliding glass doors open up to a small concrete set of steps.  Currently, we pull him and his chair down back wards, but as he gets heavier this will no longer be an option. 

Our fantastic social worker, (have I mentioned how much i love her?) found us a non profit organziation that offers financial assistance to modify homes for children like Walker. 

Yesterday the consultation crew came and we were able to get some ideas of what is proper building code.  It was valuable information, like door ways should be three feet wide, and a ramp must slope twelve inches for every one inch of elevation.  They also pointed out that the if we install a handicap shower stall we would need to replace the bathroom vanity because we wouldn't have much room to get to the toilet. (pretty important I think) This is why these guys are called in.  They've done it and seen it and know things that we would never even think about. 

It is a slow process, but I am trying to look ahead and figure out what Walker's needs will be in the future, and how we can best accommodate them.  If you or anyone you know has done this before, I would love to hear ideas!