Mystery Lane

Mystery Lane

Thursday, December 6, 2012

Not Enough Time In The Day

I was surprised when I looked at my blog yesterday and realized that I hadn’t posted in nearly 3 weeks.  I didn’t realize time had gone that fast!  Lately, it seems I have had about 10 balls up in the air at any given time.  Unfortunately I am one of those anal people who makes my daily list of things to do and can’t rest until everything is checked off.  Therefore leaving me no time to just sit and do something I want to do, like write on the blog.  Finally this week I wrote down on my to do list “Blog!”  I know, pathetic.  So what has been keeping me busy the last 3 weeks?  Where do I begin….
Let’s start with the kid, Jackson.  We’ve continued to do the Anat Baniel and Feldenkrais sessions and Jackson is doing beautifully.  He just seems more aware of his body, where he is, and what is going on.  It’s been fun to see the small, but significant, changes.  This is the last week of his horseback riding for a couple of months.  It’s too cold here in Spokane to go year round so we will start back up at the end of February.  The last couple of times he rode he rode with a saddle.  He’s only rode bare back before so it was fun to see him in a saddle with stirrups.  He looked like a tiny cowboy!  Usually when he gets tired when riding he will lay back or lay forward to rest.  Unfortunately for him, the saddle won’t allow him to do that.  The first time he tried to lay down he let out a few protests, but then gave up.  The second time he did great with it.  It will be interesting to see how he does after a couple of months off.  Jackson has also been doing aquatic therapy and he loves that.  All these therapies and a few doctor appointments here and there keep me going, going, and going. 
One good thing in the last couple of weeks is that we finally found a respite caregiver.  After numerous caregivers coming and going, we finally found one who liked Jackson and we liked.  I didn’t realize until we didn’t have a caregiver what a break it gave me.  Having time to myself is a precious commodity and just having the ability to go to the grocery store and shop by myself is a treat.  Plus having someone carry Jackson around for a few hours a week really gives my back a break.  Needless to say I’ve been in a lot of back pain the last month.  At 45 pounds the kid is a load to carry!  It always takes me a few weeks to get used to having someone take care of Jackson, and to trust them so I can leave the house.  I am looking forward to being able to catch up on all the stuff I haven’t had time for lately, and to get back to writing on my blog regularly again.
A couple of weeks ago Jackson went to a birthday party of a classmate.  It was the first time Jackson had been invited to a party from one of his friends at school.  He loved it.  So did I.  The party was in this little local ice cream/deli shop and they had grilled cheese sandwiches, ice cream and cake popsicles.  Who doesn’t love all those foods?  Plus Jackson’s best girlfriend from last year was there.  Abigail moved schools this year so we haven’t seen her.  Jackson saw her and a big smile broke out.  She ran over and gave him a kiss.  It was adorable.  Last year, every morning Abigail would run over to Jackson and say “Good morning sweetheart!”  Then she would give him a kiss on his cheek.  It was so freaking cute!  It made my heart melt every time.  So for him to see his Abigail again was such a treat.  Plus for me it was a great feeling to know that Jackson has friends.  I worry so much about that.  I want my little boy to have friends and people in his life outside of our home and family.  I love that he does. 
For me the last few weeks have been busy with advocating.  I’ve been aware of how the special education preschool parents have been kind of left out of the elementary school activities that the Parent Teacher Group (PTG) puts on.  That bothers me.  I noticed it last year and just kind of kept my mouth shut.  But this year I decided it bothered me enough to do something about it.  I finally met with the PTG President and I also went and spoke with the Principal.  They were both wonderfully receptive and don’t want the special education parents to be secluded or left out.  Tonight I will go to my first PTG meeting and on the agenda is how to include the special education parents.  I am excited, and a little anxious, to see how the other parents react to more inclusive activities.  The thing to remember, for anyone who reads this whether you have a special needs child or a neurotypical child, is that we are parents too.  We love our children and want them to be part of their school community.  We want them to have friends.  We want them to have fun.  We want them to enjoy their childhood.  We want them to learn.  We aren’t different in those regards.  Our lives as parents take on a different role than most parents, but in the end we are parents.  And our children are simply that, children. 
Perhaps the most time consuming item in the last few weeks has been my advocacy class.  Last week I went to Olympia (our State Capitol) for 3 days to learn how to advocate for those with disabilities.  Before I left I had to prepare testimony and meet with one of my legislators.  So I met with my district Representative Kevin Parker.  It was a great opportunity to talk to him about the Affordable Health Care Act (Obamacare) and how it was going to affect families.  We also spoke about education and in particular special education funding.  It was a fantastic conversation and I loved hearing his perspective and how these issues will be included in the legislative session next year.  I had never been to Olympia and I had never seen our Capitol Building.  It was magnificent.  We got to spend a day in the Capitol Building and we held a mock hearing where we had to testify about an issue that was important to us.  I testified on how day cares/preschools reject children like Jackson despite the American with Disabilities Act clearly stating they legally can’t.  I used my testimony to ask the legislature to create and pass laws that would give clear and concise guidelines for these institutions to follow when accepting/denying children with disabilities.  Even though it was a mock hearing, it motivated me substantially.  I hope I do get to stand up in front of our Senate or House someday and testify on behalf of Jackson and others with disabilities.  Heck, maybe someday I will be sitting in one of the Senate or House seats hearing testimony from others.  I think Senator Klim has a nice ring to it.
Next week we are headed to the sunny state of Florida for a couple of weeks.  We are going to spend Christmas with the best parents, in-laws and grandparents in the world.  I can’t wait to see them!  Jackson is in love with the ocean (so am I) and we take nightly walks on the beach with him.  Jackson’s face just lights up when he sees the ocean.  I think he likes the sounds, the breeze and the peacefulness.  Christmas always brings Kevin’s 4 cousins and their families (the Dixon’s) to town too so it is a great fun time and I love hanging out with the Dixon women!  I am looking forward to a little down time and lots of family time.  There’s nothing like Christmas with family to recharge the batteries!

1 comment:

  1. Stacey, it's always nice to read your blog and about Jackson's progress. You are always in my thoughts. Hope you all have a great Christmas holiday.