Mystery Lane

Mystery Lane

Friday, November 16, 2012

Credo for Support

I saw this video in my Advocacy Leadership class and just wanted to share it.  I think a lot of people out there only see a person with disabilities.  They forget, or just don't understand, that we are all human and want things for ourselves.  People with disabilities just want to be treated with respect, decency and understanding.  They also want to accomplish things in their lives, just like those of us without disabilities.  They want a job, a home, friends, and independence.  Watch and begin to understand.

Friday, November 9, 2012

Progress and Loss

I have no idea where the last couple of weeks have gone.  Well, now that I think about it I actually do.  Jackson has been a demanding supervisor and requiring a lot of my time.
For almost a year we had the same respite care giver taking care of Jackson.  While she took care of Jackson I was actually able to catch up on errands, go to the bakery to work on my blog, go to my doctor appointments, you name it.  Unfortunately she left us a couple of weeks ago and we haven’t been able to find another one that we like and/or likes us.  So there went my free time.  And my energy level.  Hopefully we will find someone soon so I can get caught up on life and some sleep!
In the meantime, Jackson has been a busy little boy.  Lots of therapy sessions, 6 month follow up doctor appointments, and school.  This week he went to the dentist and for the first time they were able to clean his teeth.  They didn’t get to clean the backs of his teeth but they got the front and that was pretty amazing.  It was a start and I will take it.  He decided he liked the suction tube that sucks the water out of your mouth.  He kept trying to get it with his tongue which was quite hilarious.  I figure if we try a little every time we go then hopefully someday he will be used to it and dental appointments won’t be traumatic, for any of us! 
As I mentioned a couple of posts ago we are trying to some new, “alternative” therapies with Jackson.  They are called Feldenkrais and Anat Baniel.  In October we did Feldenkrais.  This month we are doing Anat Baniel.  Instead of going once a week we do sessions.  Jackson will have therapy every day for 3-5 days and then have a week or so off.  When we started I was hopeful that these therapies would help Jackson, but I was also skeptical.  Only because I have a love/hate relationship with hope and I don’t like to get my hopes up and then have them crushed like a garlic clove.  But after a month or so of therapy I can say we are seeing some progress!  No miracles or anything, but progress in the form of achievement for Jackson.  It’s little things like playing with his feet.  That is actually a milestone most babies meet, discovering and playing with their feet.  Jackson is just now realizing they are there and he is playing with them.  He is sitting up straighter.  His legs aren’t as tight and stiff as they have been traditionally.  He is reaching for things more.  He is becoming some kind of contortionist with his body.  He gets all tangled up and then plops over to get untangled.  That one is actually pretty entertaining to watch.  Twice he has sat up on his left side (his weak side).  A couple of times he has actually gotten into a crawling position with both arms up.  He isn’t there long but the fact that he is able to put pressure on his left arm is amazing.  In general, the kid just seems different.  It’s amazing to see. 
I don’t ever want to underestimate what Jackson is able to do.  But I think that as a parent of a special needs child we sometimes are forced to look at what our children can’t do.  Doctors will ask “Can he do this?  Can he do that?”  And you have to face your child’s inabilities.  Hardly anyone ever asks “What can Jackson do?”  So you find yourself focusing on the negative, instead of the positive.  Ultimately leading you to a place that is without a positive outlook.  I think that is where I have been for a while because the traditional occupational and physical therapy hasn’t helped Jackson progress very much.  Now I am seeing how much Jackson is capable of and it is exciting!  I realize now how important it is to try new things, take a leap of faith, and seek out new opportunities for Jackson.  Giving him the best chance of success is the most important gift I can give him.  Oh how I love giving gifts!