Jackson Update

It’s time for a Jackson update!  Seeing that he is the star of my blog, it’s time to let everyone know how the kid is doing.  Long story short, he’s had some ups and downs the last couple of months.

For starters he has been fighting off a cold or two.  Wiping those constantly runny, green boogers never get old.  Ha!  Here’s a prime example, Jackson was in his high chair and sneezed.  Big long booger comes out, down past his chin.  I run to get Kleenex.  Jackson flips his head around.  Big booger flies through air and is now spread across his cheek and into his ear.  Just as I reach him he grabs to rub it.  Thankfully I got there just in time to stop him!  I don’t even want to think about what that would have been like.  So yeah, fun times around here lately.  I also think he has had some kind of stomach virus too.  He’s had a couple of days of throwing up and some interesting colored bowel movements.  Some bouts of constipation have also made for some unhappy moments for us.  Don’t know what is going on with him, but for the most part he has maintained good spirits. 

Unfortunately, Jackson had 2 seizures a couple of weeks ago.  He was at school when he had them so I didn’t see them.  Not sure exactly what brought them on.  Either it was due to his being sick, a growth spurt, maybe it was just random.  It is always so disheartening and scary to me.  I’ve gotten used to him not having them and I really, really prefer it that way.  Then he has a seizure and it is a reminder of how lucky he has been to find the right medicine to stop them.  I hope we don’t see any more anytime soon. 

We’ve continued the Feldenkrais and Anat Baniel therapies and Jackson is doing great with them.  He moves differently, is more aware of his body and surroundings, and seems like he is developing in little ways.  It’s been great to watch the change in him.  It’s also been affirming of the risk we took in taking him out of traditional physical and occupational therapy.  I have come to believe that when you have a special needs child you have to be willing to take some risks.  Whether with therapies, medications or doctors, you have to do what you can to give your child the best chance at life.  It is scary, but as Teddy Roosevelt said ““It is impossible to win the great prizes of life without running risks, and the greatest of all prizes are those connected with the home.”  So true Teddy.

It’s never a dull moment with Jackson.  He’s always switching things up around here to keep me on my toes.  I guess somebody’s got to. 

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.”

January Guest Blog

I love this blog.  It has been healing for me to write about Jackson and about issues that I have gone through as his Mama.  I've also discovered how much I love writing.  I just wish I had more time to do it!  When I went to the advocacy weekend in Olympia a couple of months ago I was asked if I would be interested in being a guest blogger on the new Informing Families Building Trust blog which is through the Developmental Disabilities Council of Washington State.  Each month they will have a topic for guest bloggers to write about.  The blog is finally up and running and my first contribution is now on their blog.  You can read my submission below or check the blog and my contribution out at: http://informingfamilies.blogspot.com/2013_01_01_archive.html 

“I Wouldn’t Change My Child for the World, but I’d Change the World for My Child”

When we got the diagnosis that our son had a brain malformation and wasn’t going to be who we thought he was, I thought the world was going to end.  Instead, I soon discovered that the world was just beginning. 

For so long I grieved over the lost little boy I wanted to have.  I think that is a pretty normal reaction for most of us who have a child with special needs.  But what has taken me 3 and half years to learn, and what I am still learning, is that having a child like Jackson is cause for celebration.  “Why?” some may ask.  Why would I celebrate having a child who at 4 years old can’t walk, can’t talk, is epileptic, and has cognitive disabilities?  My response to that is how could I not celebrate a child who is beautiful, happy, funny, goofy, sweet and loving, has touched so many lives, brings enormous joy to my life, reminds me what is really important, is slowly but surely making progress, and who has taught me what a mother’s love really is.  Despite Jackson’s disabilities and the struggles we face in raising him, he is my son.  He is a part of me.  How does anything get any better than that? 

Don’t get me wrong, there are tough days.  Some very tough days.  Jackson is about 45 pounds and carrying him around, putting him in the car, and putting him in his wheelchair every day is wreaking havoc on my back.  It’s frustrating when he is wants something and gets upset or mad and I have no idea what he wants.  His numerous doctor and therapy appointments are exhausting.  It breaks my heart when he has to go in the hospital for tests and they poke and prod him.  Then there was the time that he had a seizure in the car.  We pulled off to the side of the freeway just as Jackson lost consciousness and his lips turned blue.  For a few minutes of my life I thought my son had died.  A little bit of my heart died that day.  So it’s not all roses.  But no parent has a child that is all roses to raise.  Every parent has challenges with their child.  Special needs parents just have different challenges. 

For me personally, the best thing to come from Jackson, other than Jackson himself, is a new sense of purpose.  In college my minor was Parent Education.  I was getting my teaching degree and I thought that would be a good accompaniment since I would also be working with parents.  Little did I know that my in my far off future it would be all I wanted to do.  Having traveled down the road of a special needs parent I have learned a lot, am still learning a lot, and know that there is a plethora of learning ahead for me.  I want to share what I have learned with others, help them travel down their road with their child, and be a support system for them.  I also want to be an advocate for not only my son, but for other people with disabilities.  I am currently taking the Advocacy Leadership class offered through the Arc of Spokane so that I can learn how to be an effective and educated advocate.  In my wildest dreams I never imagined this is something I would want to do with my life.  Yet here I am. 

I would never want to change Jackson.  I love who he is.  It is exactly because of who he is that makes me want to go out and change the world for other parents and people with disabilities.  If at 4 years old he can ignite my passion to change the world, I can’t wait to see what the future holds for us!

Personal Values & Vision Statement

I was recently given a homework assignment in my Advocacy Leadership class.  The homework was to write down my personal values and a vision statement for the next 5 years.  Thought I would share it on the blog. 

Personal Values & Vision Statement

My personal values have traditionally been honesty and integrity (being true to who I am and being honest with others), respect (treating others the way I want to be treated and showing others respect), sympathy (understanding and making an effort to see where others are coming from), and decency (being someone I can be proud to be). 

Since having my son I have added inclusion and unification to my values.  I believe all members of our society should be just that, members.  Despite differences someone may have, they are human and are part of our society and should be included as such.  In addition, creating alliances between those with disabilities and those without disabilities is core to creating unification in our society.  If we do not educate and bring awareness to the needs, wants and desires of those with disabilities, society will continue to treat them with discrimination and indifference. 

My son Jackson has taught me a hard lesson.   You cannot plan ANYTHING!  No matter the amount of planning and preparation I do, things have a way of not working out.  5 years ago I was pregnant with Jackson.  My vision was having a healthy little boy who followed his Daddy around fixing things in our house.  I even found a little tool belt for him.  By now he would be rock climbing with us and would be going to preschool while I was at work.  None of the vision I had 5 years ago is reality today.  Having a 5 year plan is a nice idea but just not realistic. 

But just to humor you and follow through with my homework, all I can say for my 5 year plan is that I hope to be alive and still taking care of my beautiful little boy and amazing husband.  It would be nice to have grown our family with more children, I would like to be doing some advocate work for parents of special needs kiddos, and I would be overjoyed if Jackson had some kind of mobility.  Otherwise I will get what I get, and I won’t throw a fit.

Back to Life

Now that we are no longer on vacation it has been back to life for the Klim’s this week.  Jackson is back in school which of course means he got sick this week.  He managed to catch a little virus that made him throw up and have diarrhea.  Tuesday night the massive bum explosion began around 6 p.m. and lasted until 5 a.m. Wednesday.  The good thing is once he got the majority out he was the happiest kid you ever saw.  The bad thing was he was the happiest kid you ever saw, at 1, 2, 3, 4, and 5 a.m.  At 3 a.m. when you are changing about your 12^th diaper for the evening, things don’t seem so happy.  Mama was definitely not happy.  Another bad thing about Jackson is that when I use my stern Mommy voice, he laughs.  For some reason he thinks it’s hilarious.  Which only makes me more mad.  Which is even more funny to him.  Damn kid.  I suppose it was around 3:30 a.m. when I was completely out of my head with exhaustion that I decided I might as well join in the fun.  So we had a little picnic on the floor of his bedroom, some water and bread to help with hydration and to stop the pooping.  And we laughed, for whatever reason.  Finally around 5 a.m. he went to sleep.  I headed to bed thinking we could get finally get some sleep.  3 hours later Jackson was awake and happy again.  Needless to say Wednesday was a long day for us.  He just didn’t want to nap and all I wanted to do was nap.  We made it through the day though and Jackson was back off to school today.  Although, he was grouchy and yawning all the way to school.  Cute little bugger. 

This week I conducted my first Random Act of Kindness in honor of the Newtown victims.  I decided that the most appropriate place to start was with Jackson’s teachers, in honor of the teachers who lost their lives.  So on a cold, rainy/snowy day I surprised Jackson’s 3 teachers with hot chocolate.  It was well worth it to see them smile and thank me repeatedly.  As a former teacher, I know how hard teachers work.  I firmly believe Jackson’s teachers work a little harder since they are dealing with special needs children.  And since one of the young victims of Newtown was a child with special needs, and another victim was his aide, then it only seemed more relevant to show them an act of kindness.  Can anyone guess where I’m headed next?