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!

Credo for Support

I saw this video in my Advocacy Leadership class and just wanted to share it.  I think a lot of people out there only see a person with disabilities.  They forget, or just don't understand, that we are all human and want things for ourselves.  People with disabilities just want to be treated with respect, decency and understanding.  They also want to accomplish things in their lives, just like those of us without disabilities.  They want a job, a home, friends, and independence.  Watch and begin to understand. 

http://www.youtube.com/watch?v=SKCxwDF-SrI&feature=em-share_video_user

Progress and Loss

I have no idea where the last couple of weeks have gone.  Well, now that I think about it I actually do.  Jackson has been a demanding supervisor and requiring a lot of my time.

For almost a year we had the same respite care giver taking care of Jackson.  While she took care of Jackson I was actually able to catch up on errands, go to the bakery to work on my blog, go to my doctor appointments, you name it.  Unfortunately she left us a couple of weeks ago and we haven’t been able to find another one that we like and/or likes us.  So there went my free time.  And my energy level.  Hopefully we will find someone soon so I can get caught up on life and some sleep!

In the meantime, Jackson has been a busy little boy.  Lots of therapy sessions, 6 month follow up doctor appointments, and school.  This week he went to the dentist and for the first time they were able to clean his teeth.  They didn’t get to clean the backs of his teeth but they got the front and that was pretty amazing.  It was a start and I will take it.  He decided he liked the suction tube that sucks the water out of your mouth.  He kept trying to get it with his tongue which was quite hilarious.  I figure if we try a little every time we go then hopefully someday he will be used to it and dental appointments won’t be traumatic, for any of us! 

As I mentioned a couple of posts ago we are trying to some new, “alternative” therapies with Jackson.  They are called Feldenkrais and Anat Baniel.  In October we did Feldenkrais.  This month we are doing Anat Baniel.  Instead of going once a week we do sessions.  Jackson will have therapy every day for 3-5 days and then have a week or so off.  When we started I was hopeful that these therapies would help Jackson, but I was also skeptical.  Only because I have a love/hate relationship with hope and I don’t like to get my hopes up and then have them crushed like a garlic clove.  But after a month or so of therapy I can say we are seeing some progress!  No miracles or anything, but progress in the form of achievement for Jackson.  It’s little things like playing with his feet.  That is actually a milestone most babies meet, discovering and playing with their feet.  Jackson is just now realizing they are there and he is playing with them.  He is sitting up straighter.  His legs aren’t as tight and stiff as they have been traditionally.  He is reaching for things more.  He is becoming some kind of contortionist with his body.  He gets all tangled up and then plops over to get untangled.  That one is actually pretty entertaining to watch.  Twice he has sat up on his left side (his weak side).  A couple of times he has actually gotten into a crawling position with both arms up.  He isn’t there long but the fact that he is able to put pressure on his left arm is amazing.  In general, the kid just seems different.  It’s amazing to see. 

I don’t ever want to underestimate what Jackson is able to do.  But I think that as a parent of a special needs child we sometimes are forced to look at what our children can’t do.  Doctors will ask “Can he do this?  Can he do that?”  And you have to face your child’s inabilities.  Hardly anyone ever asks “What can Jackson do?”  So you find yourself focusing on the negative, instead of the positive.  Ultimately leading you to a place that is without a positive outlook.  I think that is where I have been for a while because the traditional occupational and physical therapy hasn’t helped Jackson progress very much.  Now I am seeing how much Jackson is capable of and it is exciting!  I realize now how important it is to try new things, take a leap of faith, and seek out new opportunities for Jackson.  Giving him the best chance of success is the most important gift I can give him.  Oh how I love giving gifts!

The "R" Word

As many of you probably know, after the presidential debate earlier this week Ann Coulter tweeted out that she approved of "Romney's decision to be kind and gentle to the retard."  I can’t really explain to you in words how this tweet made me feel.  My heart sank a little, I had trouble comprehending her words because I can’t fathom someone being so ignorant and insensitive, and then I got so mad my hands started shaking.  All I could think about was that awful July afternoon when Kevin and I sat in the doctor’s office and listened as we were told that Jackson would more than likely have some form of mental retardation.  Unless you’ve heard those words describe your child, you cannot fully grasp the severity of devastation the “R” word brings to your life.  My hatred for that word is so deep I can literally feel it in my bones. 

When I look at my son I see a beautiful, funny, silly little boy.  Granted, after 4 years the kid is still a mystery to me.  I know he understands more than he lets on, but to what extent I don’t know.  He has different cries/yells for different things (pain, uncomfortable, bored, tired, etc.) that I am able to decipher.  But if it is his pain cry I am often at a loss as to what is hurting him.  He may not be able to walk but he knows how to get to where he wants to go.  He rolls, sits up, turns around and ultimately reaches his destination and sometimes ends up in a place he didn’t even know he wanted to go to.  Jackson just has a different way of doing things and that surely doesn’t make him less of a person.  By no means does any of this make him a retard.  To imply so would be saying that he isn’t worthy of respect, fair treatment, and decency.  Things he deserves just like any other child. 

Last month I started a 7 month long class on how to become a better advocate for disabled persons.  I am taking this class because I not only want to be the best advocate I can be for my son, but also because I want to work with parents of special needs children someday.  I want to help other parents navigate the journey I am on.  Our first weekend of class we talked about something called People First Language.  The premise is to ensure inclusion, freedom, and respect for all we must use language that doesn’t reinforce attitudinal barriers.  For example, instead of saying the handicapped or disabled we should be saying people with disabilities or instead of saying he/she is mentally retarded say he/she has a cognitive disability.  When we talked about this in class I kind of thought it was a no brainer, but then as we did more examples of words to use I realized that even I used words that weren’t people first friendly.  What I realized is that our language system has changed over the years.  Words that were once commonplace, are now socially unacceptable.  Quite frankly I believe that is a good thing.  My best friend is a beautiful black woman, I would never, ever, call her a nigger.  Kevin’s best friend is gay, I would never, ever call him a fag.  Just writing these words bother me profusely.  Jackson has taught me that we are all just human beings.  We are not black, white, blond, brown eyed, tall or short.  We are just human beings.  We don’t need to separate one group of people from another.  And we surely do not need to attach hurtful words to describe one group of people from another. 

A part of me (the emotional part) wants to hunt Ann Coulter down, kick her in the shin and punch her in the face, hopefully breaking her nose.  I really, really do.  The more logical side of me would like her to meet Jackson.  Let her see what a cute, cool kid he is.  Then ask her to call him a retard to his face.  If she did it then we would know that she is really an evil person with no heart or conscience.  If she couldn’t do it, then maybe we could change the way she views others and uses her words.  In the meantime, I ask all of you to think about the words you use to describe others.  Think of some of the hurtful words we have used over the years.  Then make a conscious effort to change. Most of all, spread the word that the “R” word just isn’t okay.  If someone says it, tell them about Jackson.  Make them realize that the word is not necessary and there are other words that can be used.  We are able capable of making a difference.  Jackson has made a difference and touched so many lives.  If a 4 year old can do it, then you can too. 

Visit http://www.r-word.org/ and like them on Facebook.  Then ask your friends to do it too!  The more we spread the word, the more we can end the word!

 

“Everyone thinks of changing the world, but no one thinks of changing himself.”  Leo Tolstoy

The Wheelchair

Jackson has had his wheelchair for about a month now.  It is much better than any of the strollers we have used over the last couple of years.  It fits him well, he is sitting up straight, and his legs aren’t flailing around.  It’s just a better support system for him.  I am glad that we finally got it.  Having said that, I’ll admit when we picked up the wheelchair and I saw Jackson in it for the first time it was a little shocking to me.  I suppose no Mother is ever prepared to see her little child be confined to a wheelchair.  It broke my heart a little.  But my heartstrings aren’t as important as Jackson being able to get around though so I just had to stop thinking that way and be thankful that we were able to get him a wheelchair.  However, it has taken some time for me to get used to the looks we get now when we are out and about.   

The day we got the wheelchair I took Jackson to Costco to get lunch.  As we strolled into the store I became acutely aware of all the looks we were getting.  It was probably mostly me feeling a little shocked about the whole thing, but there was definitely some looks.  A few were the “What is wrong with that kid” look.  A few were “Oh that poor child and mother” look.  A few were just your regular smiles to greet someone.  Most importantly I got a couple “He is so cute!” comments.  As we sat down to eat I was feeling a little shaky about it.  Then my neighbors saw us and came over to say hi.  I told them we just got the wheelchair and were getting some looks.  Their response was “Who cares?”  They were right.  Who cares?  It was perfect timing to remind me that Jackson is the one that matters, not the strangers who we pass by. 

A few days later Jackson and I were in Kohl’s returning an item.  As we stood in line at the Customer Service desk a little girl, who was probably about 5 years old, and her grandma walked by.  I heard her say to her grandma in a sad little voice “Oh look he doesn’t have legs.”  The grandma quickly told her to be quiet and started to walk away.  For a brief moment I thought about just letting them go, but then I thought I should say something, anything that would give Jackson a voice to be heard and maybe understood.  So I said “He has legs, see?  He just doesn’t know how to use them.”  They stopped and looked at Jackson.  The little girl asked me “Why?”  I told her Jackson was born with a bad brain and so not all of his body could move right.  She tilted her head and gave me perhaps the saddest look I have ever seen from a child.  Then she asked “Will he be okay?”  I said “Yes, he will be okay.  He is happy, loves ice cream and doesn’t care if he legs don’t work right.”  She smiled at Jackson and the grandma smiled at me and they were gone.  I don’t know if that little exchange will have an effect on a 5 year old but it did on me.  It felt really good to let someone know that Jackson is a person too even though he is in a wheelchair.  He’s just a kid who gets around on wheels instead of legs. 

I recently saw a quote that is another motto I need to adopt.  “Life is 10% what happens to us and 90% how we react to it.”  (Charles Swindoll)  That pesky 90% is what sends me into tailspins of sorrow, anger and questioning.  I need to stop reacting to all of these little life events with Jackson and just start living my life with Jackson.  Lately, I feel like I am getting that message.  It’s a journey I will probably be on for a long time.  Lucky for me I have the best little companion to keep me company.  Jackson.