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?

Bringing Smiles

 Well we made it to sunny Florida where we were able to enjoy 14 days of beach and family time.  The best part of our travels and being out and about in Florida was Jackson’s wheelchair.  More specifically, the Christmas lights on Jackson’s wheelchair.  Who knew a string of lights would make so many people smile?

It started the morning we left Spokane.  The Southwest ticket agent was the first to comment on them.  Then the TSA Agent gave Jackson a sticker saying he had the best wheelchair he’s ever seen.  All through the airports I saw people looking at his chair and smiling.  I heard a lot of people commenting on his lights as we walked by.  The best responses came from other kids who would stop in their tracks and stare at the lights as we went by or yell “Look at the lights on his chair!”  One day we were in Target in the toy section and there was a little boy who was probably about 10 with his two little brothers.  The older boy stopped when he saw the lights.  Then he told his little brothers to look.  As Jackson went by them all 3 boys were looking and smiling.  As I walked by I said “Pretty cool lights right?”  The older boy looked at me with a big smile and said “They’re awesome!”  I was so delighted to have so many people looking at Jackson is such a happy way.  Instead of staring at his chair negatively or giving me that look of pity smile, we got to experience smiles of happiness.  I think it was the first time I actually liked the wheelchair and it changed my perception.  It seems Jackson is always teaching me new ways to think and feel.  And now his mobility device is pitching in. 

Last night I took the lights off the wheelchair.  Jackson went back to school today and I figured it was time.  I was sad to take them off.  They brought people joy and they made Jackson stand out, in a positive way.  From now on if I can find lights for every holiday – Valentines, St. Patrick’s Day, Easter, etc.  – they are going to be on his wheelchair!

On another note, I am still thinking about the victims of Newtown.  Mostly thinking about their families and how hard the holidays must have been for them.  I’ve been trying to come up with ways to honor them.  I’ve decided to adopt Ann Curry’s idea of 26 Acts of Kindness.  I am going to make them last all year.  Maybe do 2-3 a month.  I’ve come up with some fun ideas and as I follow through with them I will share them on my blog.  So stay tuned!

Too Many Angels

I can’t seem to stay quiet about the shootings in Newtown.  It’s weighed heavily on my heart since I first heard about it when we got off the plane in Florida.  Every day I watch the news and see the faces of those children.  I love to hear about them and the lives they had.  How innocent and simple their lives were.  I love Emilie’s blue eyes.  Daniel’s missing two front teeth.  Jessica’s love of Orca whales.  Jack’s love of the NY Giants.  Catherine’s red hair.  How Chase completed his first triathlon at age 6.  How Ana never walked, she danced.  Their stories make me smile and cry.  I’ve cried every day for them since they were murdered.  I cry for their parents.  I hope I never know what their loss is like.  I wish there was something I could do to bear some of their grief for them.  It seems an impossible load for someone to carry. 

I am going to say something that some might find offensive but I am still going to say it.  I am mad at the shooters Mom.  Really, really mad.  Here is why.  That mother knew her child was mentally unstable.  I have no doubt she tried to find an outlet that would help her child.  She foolishly thought the solution was to teach him how to use guns.  A friend of hers told the press that she wanted him to know how to be safe with guns.  Why?  Why would she even have guns in a home with a child who has mental instability?  As a mother of a child with special needs I can assure you I will never have guns in my home.  It would be ludicrous.  I don’t know what Jackson is going to be like when he is 20.  Hell, I don’t even know what Jackson is going to be like in a year.  But because he is a child who may or may not fully understand his actions and behavior, I would never risk having a dangerous weapon in my home.  For his own safety, and for others.  This woman had an arsenal of weapons.  What was she thinking?  Why?  I just don’t get it.  To me, regardless of the difficulty and grief she faced over her son’s condition (whatever that may be), she was irresponsible.  That irresponsibility not only cost her her own life, but the lives of 26 innocent people. 

Meanwhile, I hear all these debates on the news channels about gun control.  I see posts on Facebook about what my friends think should be done.  Here’s my two cents.  I grew up around guns.  My Dad had a shotgun, he was a hunter.  He even used to have a machine that loaded his shells and I would help him.  He also had a handgun in his nightstand next to his bed.  I had a BB gun when I was little and my Dad and I would shoot cans and trees.  We would go skeet shooting.  I never particularly cared for any of it, but my Dad liked to do it and I liked to hang out with my Dad.  Having said that, I feel we need to get weapons of war off the streets.  Why does anyone need a semi-automatic weapon?  Why does anyone need guns with high capacity magazines?  No one does.  No one NEEDS it.  They may want it, but they don’t need it.  I’m all for people owning their guns, but there needs to be some kind of control on what kind of guns people can own.  I know some of you may feel like you should be able to own any gun you want.  That’s a valid point.  But is your right to own a weapon of war more important than the lives of 20 children?  I don’t think it is.  As far as letting teachers carry guns, that idea makes me sick to my stomach.  As a former teacher I would never want a gun in my school.  What happens if a teacher hears something she thinks is gunfire?  She hides her children in the classroom, looks down the hall and fires at the first thing coming around the corner.  What if that thing coming around the corner was a child?  She just killed a child.  You hear stories like that all the time.  Just a couple of months ago a father shot his son when he came home late at night because he thought he was an intruder.  Besides, in my opinion, countering violence with violence is not a solution.  That age old saying “Guns don’t kill people, people kill people” is ignorance in my opinion.  I can guarantee you if the Newtown shooter walked into the school carrying a knife 20 mothers and fathers wouldn’t be burying their babies this week.  Their babies wouldn’t have died with anywhere between 2-11 bullets in their body.  Those guns killed those children and the adults who tried to save them.  Most importantly, our attitude towards people with mental disabilities needs to change.  These shooters tend to share a common trait, they had some kind of mental instability.  Why didn’t they have better access to care?  Why do these people fall through the cracks?  Where are the services they need to stay safe and cared for?  Maybe if the NRA stopped spending millions on lobbying politicians and spent their money on lobbying for mental health care we would have a safer country.  The problem is overwhelming and contentious. 

For now, I will stop what I am doing every time I hear a story of one of the Newtown victims on TV or read one in the paper.  I will listen to what their life was like and how much they meant to those who loved them.  I will cry for their lost life.  Then I will give Jackson a hug, a big hug, and thank him for bringing me so much joy.  I will treasure what I have.  Something we should all be doing, every day. 

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!