Keeping Your World Wide

Did another guest blog for the Informing Families, Building Trust this month.  You can check it out at:  http://www.informingfamilies.blogspot.com/ 

Advocacy Fun

As some of you know, I am taking a Leadership Advocacy class through the Arc of Spokane.  We meet once a month (Friday night and all day Saturday) for 7 months in addition to going to our Capitol twice to do some advocacy work in the legislature.  The class teaches us about the resources in our community that will help people with disabilities and how to become effective advocates whether in our community or on a larger scale.  When I first heard about the class I thought it would be a great tool for me to have in my quest to one day work with parents of special needs kiddos.  What I didn’t know is that this class was going to change my life and my desire to help strengthen the disability community.

Our first homework assignment was to contact and meet one of our legislators.  I ended up meeting with Representative Kevin Parker and talked to him about Jackson and the issues affecting our family.  It was a great conversation and I appreciated his questions and desire to do what he could to help families like ours.  Mostly I just realized that our legislators are just like us, living in our city, raising their families, and concerned about the state of our economy.  Then I went to Olympia for 3 days for a workshop and got to go to our Capitol for the first time.  That first visit sparked something in me that I didn’t know existed.  I wanted to move to Olympia so I could spend every day working with legislators to educate them and get them to support legislation that will benefit those with disabilities.  Never before did I ever even think of doing something like that.  In the past I have written a few letters to my legislators to ask them to support various bills before, but I never had the opportunity to visit any of them in Olympia.  Suddenly it became very clear to me that I didn’t just want to help those families in my community, I wanted to help all the families in Washington. 

A lot has happened since that first visit.  I really wanted to attend an advocacy workshop in Olympia in January so managed to find an organization to fund my trip.  I spent the day meeting with my legislators, attended a briefing on upcoming disability legislation, listened to the Chief Justice of the Washington State Supreme Court give her Report of the Judiciary to the Senate, and went to a legislative reception that evening.  I accomplished a lot that day and loved being in the Capitol among our legislators.  Upon coming home I began writing lots of letters about upcoming legislation that affected people with disabilities.  Then two weeks ago I got a call from the Washington State Developmental Disabilities Council asking if I would come over to testify in a Senate Committee hearing on one of those bills – a bill that would provide respite care for 4,000 families in the State of Washington.  I couldn’t say no to that!  So last Tuesday I flew over and testified.  It was exciting to be able to share Jackson’s story with Senate members but also heartbreaking hear the stories from other families.  So many families out there are struggling with the constant care their special needs children require.  They need help to survive. 

In the meantime Jackson and I have continued to do our local school presentations informing children about the Guild School and the work they do to help children born with disabilities.  We love going to the schools and it seems that Jackson has become somewhat of a well known figure in the community.  We were at the local children’s science center, Mobius, a couple of weekends ago and 2 children I didn’t know came up to say hi to Jackson.  We had been to their schools to talk and they recognized him.  It was pretty cool!  The best school has been Hamblen Elementary.  They raisied a great deal of money for the school but they didn’t stop there.  They wanted to do more.  Last week I went to their school and talked to all 3 sixth grade classes about what it means to be an advocate and what I have been doing in Olympia.  I talked to them about 3 different bills currently in the legislature that affect people with disabilities.  All 3 classes are currently writing letters to their legislators asking them to support the bills.  I will be delivering their letters to the legislators tomorrow when I am in Olympia (yes I am going back!).  It was great fun to be in the classroom teaching again and I loved the enthusiasm the kids have to help their friend Jackson and others with disabilities.

It seems like none of this would have happened if I hadn’t taken this advocacy class.  But I surely wouldn’t have ever taken this class if it wasn’t for my little boy.  For so long I was sad about what happened to Jackson.  I grieved so much for the little boy I had thought I lost.  What wasn’t clear to me then, but is now, is that Jackson is so much more than I thought he was going to be.  The fact that he won’t do all the things I assumed he would do is irrelevant.  What matters is that in his few short years he has touched so many lives and changed mine, for the better.  I will forever be thankful to my son who has taught me what it means love despite all odds, to give without taking back, and how to become accepting of people for who they are.  As the great BB King once said “The beautiful thing about learning is that nobody can take it away from you.” 

Unwanted Milestones

At one point after getting Jackson’s diagnosis I remember seeing a mother at the grocery story refusing to buy her son one of those matchbox cars.  After hearing “no” from his mom, despite the arguing and bargaining the kid put forth, he resorted to an all out screaming fit.  I remember thinking “Well at least I won’t have to deal with that with Jackson!”  I laughed because, at the time, I didn’t envision Jackson reaching the “normal” unwanted milestones most kids do.  As my luck would have it, Jackson has reached many of those unwanted milestones.  Throwing fits?  Yup, he does those good.  Selective listening?  Oh yeah, I know the kid knows things, like “Stop”, but pretends not to.  As his teacher once said “Jackson is a master manipulator”.  Objecting when he doesn’t get his way?  Jackson gives new meaning to the phrase “signing at the top of my lungs” when he objects.  It seems kind of cruel that he reaches all these typical, unwanted milestones.  Can’t this Mom catch a break? 

Lately Jackson has reached a milestone that I am not particularly fond of.  Get ready, this milestone isn’t one a lot of people like to discuss.  The milestone?  Masturbation.  Yes, the dreaded awareness of the pleasure stemming from his penis.  Jackson has always been aware of his penis, it has been one of his favorite toys.  His hand is always at the ready when I take his diaper off.  But over the past few weeks we have had days of constant, and I mean constant, masturbation.  To the point where he will cry.  The scissoring of the legs, the grunting, the pushing against the buckle in his car seat.  I can’t take the kid anywhere!  My idea of fun is definitely not walking around Costco while my kid is moaning and grasping his package.  As I write this I am sitting on the floor next to Jackson who is scissoring his legs like he’s doing a Jane Fonda workout.  His face is red, he’s hot and clammy, and he is making all kinds of unpleasant sounds.  About every 5 minutes I yell “KNOCK IT OFF JACKSON!” or “GIVE IT A REST KID!”  Jackson ignores me and continues on with it.  Ugh!  The kid is seriously driving me insane.  I know this is par for the course, especially for a lot of special needs kiddos.  But this Mama wants to drive off the course onto a new, no masturbating allowed one.  Since that doesn’t look like it is an option, I am stuck with a kid whose pleasure seeking behavior is consuming our day.  There isn’t much I can do to stop him so I will just sit on the floor and keep repeating a quote to myself from one of my favorite books, The Story of Ferdinand by Munro Leaf: “His mother saw that he was not lonesome, and because she was an understanding mother, even though she was a cow, she let him just sit there and be happy.”