Honesty

The other day I was reading an article written by a mom about the effect of social media on our perceptions of one another.  In gist, she talked about how we tend to just put up the best part of our lives for people to “like” and comment on.  I took some time to look at my Facebook account and it was filled with pictures of adorable kids, people checking in at fun places, pictures of exciting outings and funny meme’s.  I only had one friend who had a “keeping it real” post.  Not that I don’t like seeing all those posts, I put them up too.  It just made me start to wonder about the importance of “keeping up with the Jones’” vs. what our lives are really like.  So I decided this post would be about the reality of the Klim’s.  What’s it really like behind all those adorable pictures of Jackson?  Let me tell you….

IT’S HARD! 

Jackson is now 7 (he’ll be 8 in two months), weighs about 95 pounds, comes up to my chin when he is standing, and is freakishly strong and getting stronger every day.  He is still in diapers and can’t assist much with dressing.  So that means for nearly 8 years I have been changing diapers and dressing him.  Truth?  I’m sick of it.  Honestly?  There is no end in sight.  It’s fun when they are babies to dress them up and change their tiny little diapers.  It’s not fun when they are in elementary school.  There isn’t much I can do about it though so I just keep on keeping on.  That’s not to say there are days where I get so frustrated trying to dress him that I have to walk away from him.  Or when he has had a giant explosion in his diaper that has leaked down his legs and up his back and I yell “I’m so sick of shit!”

Those cute pictures of Jackson where he is looking at the camera and smiling?  Ha!  Those take forever to get!!  Sometimes I only have to snap a couple of pictures and I get a good one.  Other times we take 30 pictures before we get a good one or I give up.  An example - For years all I have wanted is to have some nice pictures of my little family taken at the beach when we go to Florida.  A picture or two of us all looking at the camera, at the same time, smiling, looking good.  I was determined at Christmas to get one.  I had a plan.  We headed to the beach and I set up the camera so it would capture us on the beach with the ocean in the background.  I set the timer and “click”, our first picture.  Jackson was leaning to the side, so Kevin (who was holding him) was leaning to the side.  I was leaning to the side because Kevin was next to me and Sylvia was leaning to the side because she was next to Jackson.  The picture looked like we were being blown away.  So we tried sitting.  Jackson sitting in the sand isn’t the best idea.  He thinks its food.  After numerous attempts to get a picture where Jackson was looking at the camera and not reaching for the sand, we gave up.  By that point everyone was annoyed by my picture taking attempts and Jackson’s eating sand attempts.  We got a couple of pics that turned out ok but Jackson’s head was always down.  So the next time you see a cute picture of Jackson posted on Facebook, be thankful.  I know I am.

Jackson is smart and capable at school and at therapies, but at home he won’t let on that he is.  He won’t use his communication device (Dynavox), he won’t work on words, numbers, colors, reading or anything academic with me.  As a former teacher, it’s incredibly frustrating.  He will fight me to the end before he does any kind of “work” at home.  It would be so helpful if he would use his Dynavox to let us know what he wants.  Instead he will either go over to what he wants or just yell until I figure it out.  And if you know Jackson, you know he has a good set of lungs on him.  He doesn’t make it easy, or esthetically pleasing.

Moving Jackson around has become increasingly difficult.  He walks on his knees so he is mobile once he is inside.  But getting him inside, and outside, is really hard.  We live in a split level so there are stairs to our main floor.  He does pretty well going up the stairs with assistance, but to get down the stairs we have to carry him.  It’s incredibly tough.  Getting him in and out of his wheelchair and loading him in the car is another difficult task.  He doesn’t really help with transfers and often times will fight me.  Lifting him in and out of the bathtub is even worse (he’s wet and slippery).  Needless to say all of this moving Jackson around has taken a physical toll on me.  I live with a good deal of back pain.  I visit the chiropractor regularly and get a massage here and there.  Lately I’ve had a couple of instances where my back has given out on me.  Not a fun feeling.  Jackson is only getting bigger and heavier and I worry about how much longer I can handle him.  One bright spot in this dilemma – we ordered a new minivan with a wheelchair ramp yesterday.  We should have it in a couple of weeks.  It will dramatically improve our lives when we are out and about.  I can’t wait (and neither can my back)!

We also live in a constant state of unknown.  Which can be really frustrating and sometimes really beautiful.  We never know what Jackson is going to do, he is constantly surprising us.  For example, last week Jackson went over to the kitchen table, grabbed his cup of water, took a drink, and put it back on the table without knocking it over or spilling.  This may not sound too impressive to you, but to Sylvia and I (who witnessed it) it was cause for celebration.  Typically here is what happens – Jackson will head over to his cup (which has a lid and a straw for drinking), grab for it, knock it over, spill some, finally get it in his hands, spill some on the floor, take a drink, throw the cup down on the floor and walk away.  It’s a huge mess so if I see him heading for his cup I usually try to beat him so I can hand it to him.  But that day, he did it perfectly.  He may do it again tomorrow, or he might not do it again until summer.  Who knows?  No one.  That is the constant state of unknown that exists for us.

The reality of our life is that even though there are so many hard things, there is also a joy that most people can’t understand.  It’s a different kind that comes with a unique kid like Jackson as opposed to a neurotypical child.  It can’t be put into words.  Jackson’s laugh, smile, funny noises, sense of humor, manipulative behavior, sweetness and loving nature helps ease the tough things we have to deal with every day.     

Being honest and open helps us take stock of our reality.  La Rochefoucauld said “Some beautiful things are more dazzling when they are still imperfect than when they have been too perfectly crafted."  Social media has given us a place to craft the vision of our lives we want to show to others.  But behind that vision is real life and all the good, the bad, and the ugly that comes with it.  Something the Klim’s have plenty of.

Future Outlook

A couple of days ago I read a sweet article written by a mom of a teenage boy.  She was reflecting on watching her little boy grow up and become more and more independent.  He was taller, quieter, spent more time in his room alone, hugged her a little less, and was starting to have a life of his own.  That’s what we all want for our children isn’t it?  To grow up, go off on their own and have a good life with dreams of college, financial security, and a family of their own.   That’s what I want for Sylvia, and quite honestly, and maybe surprising to many of you, for Jackson.

A few months ago I had the opportunity to visit a supported living home.  The two women living there were part of a program called Roads to Community Living.  RCL is a program to get individuals living in institutions out and place them in homes in the community.  They are then supported in their home with caregivers who help them with their daily needs.  The home was a duplex, nicely furnished, clean, and they even had a dog.  Each woman had a room of her own.  They each had a caregiver who had just made them breakfast and made sure they had taken their medicine.  They were both dressed well and had clean a clean appearance.  Best of all, they seemed very happy.  It was my first look, and recognition, that Jackson could have a life of his own someday.  Until that day, I often wondered to myself what our future with Jackson looked like.  Would Jackson live with us until we died?  What would happen to him when we died?  How could Kevin and I possibly care for him when we are 70?!  I can barely lift him now.  Would I have to dress him, feed him, move him when I am an old woman?  These are thoughts that have often preoccupied my days.  I still worry, but visiting that home has created new dreams for Jackson.  

I want Jackson to someday leave our home and have a life of his own.  I want him to have his own house or apartment.  A place he can call his own.  Will he go to college?  Who knows!  I can’t predict what new thing that kid will do tomorrow let alone 12 years down the road.  But if he can, and he wants, then I hope college is in his future.  I want him to be able to work and have a job that he enjoys.  I want him to have friends in his life that will go out to dinner with him or a movie.  I want him to have a hobby or a sport he likes.  I want him to be surrounded by people who love him on holidays and birthdays.  I want him to have people in his life who will celebrate who he is and love him because of all his good qualities.  Most of all, I want him to be happy.  And healthy.  I want all of these things for my son, just like anyone else would want for their son.  I’m no different than any other mom. 

Yesterday we had Jackson’s annual IEP meeting.  We sat in a room with his teachers, the speech, occupational, and physical therapist, a vision specialist, the music teacher, counseling student, and district official.  Every thing that was said about Jackson was positive.  Over and over I heard “We love working with Jackson.  He’s such a great kid.”  The music teacher spoke about how Jackson comes to music every day with a different general education class.  He said that even when Jackson tries to sing along and is loud, they love it because he’s contributing.  What I heard was “He’s loved.”  We had to change some of his goals that we set in August because he met them already.  His teacher said “He’s smart.  He gets it.”   Last year the teacher had one main goal for him - pick up a block and put it in a box.  This year he has learned to read sight words, knows numbers, colors, the names of his classmates, days of the week, weather, etc.  My kid is smart.  I always knew it, I just wished someone else would too.  If Jackson can make that much progress in a half of a school year, the sky is the limit for his future.  Living a life of his own someday isn’t just a pipedream, it’s reality.  A reality we start working towards now, preparing him for his future.

Having said all that, it does make me a little sad.  The thought of my baby leaving and not needing me every day makes me want to turn back the clock.  One of my favorite things about Jackson is that in many ways he is still like a baby.  He needs cuddle time.  He smiles when I kiss him (which is numerous times a day).  He follows me around the house.  He still likes peek-a-boo.  He laughs at new noises.  He loves bath time.  He tries to wiggle away when I change his diaper (this I don’t love so much though).  He looks at me adoringly.  He loves tickle time.  He lights up when I come into his room to get him out of bed every morning.  And the only consistent word he has ever said is “Mama”.  Ugh!  He’s my baby.  Always has been, always will be.  It will probably nearly kill me to see him leave and live a life of his own.  But at the same time, I will probably be more proud than any mom out there because it will mean Jackson has grown, progressed and succeeded in creating a life of his own.  Something a lot of people may doubt along the way. 

Just because Jackson was born with disabilities, it doesn’t mean those disabilities define him.  They are a part of his life, not his whole life.  If, at 7 years old, we place doubt on his abilities, and focus on his disabilities, we will stunt him from progressing.  We will send a message to him that he can’t do certain things and that his life isn’t nearly as valuable because he is disabled.  I’m not doing that to my kid.  If Jackson wants to do something, we will figure out how to do it.  It may take a little longer and require more resources, but we will figure it out.  As Henry Ford said “One of the greatest discoveries a man makes, one of his great surprises, is to find he can do what he was afraid he couldn’t do.”