Words out of My Mouth

This isn't my post, but this Special Mama took the words right out of my mouth.  Wanted to share with you all.  Take a moment to read.

http://www.huffingtonpost.com/suzanne-perryman-/to-the-author-of-the-anonymous-note-left-on-my-car-window_b_3806012.html?utm_hp_ref=mostpopular

Stages

When you are a special needs parent you go through a lot of stages, at least I have.  Some are bad, some are good, and none of them show any signs of leaving.  One of the worst ones is when you start walking down the road of “Why my child?”  That’s a dangerous one and hard to find a way to turn around.  I could write forever about that hideous stage, but I’m not in the mood right now.  Then there is the stage of simply forgetting your child has special needs, that there is anything different about your family and you just live your life, enjoying your child and all the joy he, or she, brings you.  That’s the really good stage.  Unfortunately, something always happens to snap you out of that stage and brings you back to the reality of the situation.  This week has done that for me.  But I’m finding out that maybe being snapped back to reality isn’t all that bad. 

This week Jackson attended his very first summer day camp.  It is a special camp for children with special needs.  I was so excited for him to have this opportunity.  I know a lot of kids with special needs don’t get to go to camp.  What I really want most for Jackson is to simply have the same opportunities that other kids have.  That includes going off to camp in the summer.  I planned to stay with him all week simply because I didn't know anyone running the camp and to make sure that all his needs were met.  So off we went to camp!  When we got there I was instantly struck with how many kids were there, about 30.  I was also struck with the various severities of disabilities in the crowd.  Jackson was the youngest, most of them were teenagers.  As we stood there getting ready for the pool I was watching all the kids.  And it hit me.  This is my future.  Jackson could be any one of these kids.  Maybe he is the boy sitting in the grass rocking back and forth.  Maybe he is the girl who came up and smelled my hands.  Perhaps he is the boy flapping is his arms as the train goes by.  Or the teenage girl whose speech isn’t understandable.  The truth is, it made me kind of sad.  That first day was hard on me.  I was so excited for Jackson to go to camp, but it made me think of his future and what his future might look like.  I try not to think much about his future.  Maybe that is why it was hard for me.  With Jackson I just kind of need to live day to day.  I don’t know what that kid is going to do every day let alone 5 years from now.  Yet there I was faced with his possible future.  I didn’t really want to go back that second day but the camp wasn’t about me, it was about Jackson. 

The second day was much like the first but a little easier for me.  By the third day I found that I was really starting to enjoy the kids.  I kept noticing an underlying theme with all of them.  Loving.  They were all so loving.  Because Jackson was the youngest they all thought he was a baby.  He was quite popular, especially with the girls.  Every morning they would greet him with a “Good morning Jackson!”, they would rub his head, give him a kiss on the cheek, hold his hand, fight over who got to push his wheelchair, and they would sit in the shallow end of the pool and play with him.  It was so touching to watch.  I could see Jackson light up with a few of them and I knew he had some new friends.   By the time the week was over I was sad to leave the kids and sad for Jackson that his camp was over. 

This week made me realize how lucky Jackson’s fellow campers are.  Their disabilities may make them stand out from the norm and to some that may be a bad/weird/uncomfortable thing.  But I think they actually have an advantage over people without disabilities.  They see the world differently.  To them the world is about love and caring for each other.  Not about making fun of others, hurting people’s feelings, being a bully or acting better than anyone else.  Things many neurotypical children do.  In that regard, I want Jackson to grow up to be like his fellow campers, not a neurotypical child.  I want his friends to love and care about him, not make fun of him or make him feel he isn’t worthy.  I want my son to be someone who sees the good in all people and not focus on differences that set others apart.  After all, as Benjamin Disraeli said “We are all born for love…It is the principle of existence, and its only end."

Back to the Star

My last few blog posts have been mostly about the two new little grasshoppers who have entered our life.  I think it is about time I spend a little time writing about the star of the blog – Jackson!  With the addition of a brother and sister, his life has been turned upside down and around.  Factor in the daily happenings in his own little world and it adds up to quite a lot of busyness, for him and for me. 

Adding two kids into our home has made it difficult to focus on Jackson and give him the attention he once had.  I miss it.  I’m very conscious of the fact that siblings of children who have special needs often get overlooked and don’t get all the attention they need.  I don’t want that to happen.  To make it not happen I have to make sure that my attention is equally distributed.  Impossible.  No matter what, Jackson requires more care and attention.  This balancing act is proving to be more challenging than I imagined.  I have found that the attention I give Jackson is more focused and centered.  With my limited time I have to make sure every second counts with him.  There is a part of me that feels guilty though.  I know having siblings will be the best thing for Jackson.  He seems to enjoy having the other two kids around.  He smiles at them as they walk by or when they stop and talk to him so I know he likes them.  But part of me worries what he might be feeling.  I wonder if he feels like I have abandoned him a little.  If he misses the attention, if he is jealous, if he is mad at me.  It makes me sad to think about that and I hope he understands.  A mother with guilt is what I am.  So basically I am a regular mother.

Jackson has had a few seizures recently.  The seizures he is having now are different than the ones from before.  For starters, they last a long time.  One was approximately 7 minutes long.  He is exhausted after them and typically pretty cranky.  They are hard on him and take a lot out of him.  It’s difficult to watch.  We’ve increased his medication again so hopefully that will help.  Every time he has one I find myself going down a deep hole.  I hate the seizures so much.  Watching him have one sucks me dry.  Afterwards I can’t focus, I often cry, I go down that “Why Jackson?” road, and I want to scream and throw things.  We’ve been so lucky the last year or so having him seizure free.  He’s made so much progress and is finally a happy little boy who interacts with us.  I live in fear that the seizures will return and we will lose Jackson again.  That all this progress he has made will be lost in the flurry of electrical activity of his brain.  It’s not a good feeling to live like that.

Being a parent of a child with special needs is a wonderful, emotional journey.  It has taken me a long time to focus on the good things and not the bad.  The other day a song came on the radio that reminded me of the journey.  2 years ago I put up a post called Hello World, based on the Lady Antebellum song.  It was during a difficult time that I wrote that post.  When I heard it the other day I started reflecting on how far I’ve come as a Mom.  How I’ve come to accept Jackson for all he is.  How he’s motivated me to be a better person and help others.  Then he started having seizures again and it threw me back to those difficult times.  I could feel myself turning down that dark road.  It takes a lot of energy to try and pull myself out of the car and not drive down that road.  But I have to.  I know that there are always going to be challenges in my life with Jackson.  There are challenges with every child.  How I handle and respond to those challenges is what shapes me.  I can go down the dark road or I can stay on the road we are on.  I want to stay on the road we are on, I just wish there were a few more palm trees on it.

And speaking of palm trees….we are home from our 2 week vacation in Florida.  Jackson loves Florida.  He loves the pool, he loves the beach, and most of all he loves his family.  His teenage cousins dote all over him.  They only get to see him once a year so they focus their time and attention on him and Jackson loves it.  Not to mention the aunts and uncles coming and going and the Grandma and Grandpa who think he is the best thing in the world.  He is not without love in Florida that is for sure.  Despite the bouts of diarrhea (and the dreaded BRAT diet) he had in Florida, he managed to have a great time and was happy as can be.  That kid doesn’t let a little poop stop him from having fun. 

This time I leave you with a quote that seems fitting to remind all of us to stay on the right road.  “We either make ourselves miserable, or we make ourselves strong.  The amount of work is the same.” ~ Carlos Castaneda

New Adventures

The Klim family has had an armload of adventures this past month.  There were the chaotic last days of school during which I found it important to volunteer for field trips and field day.  I have no idea why.  Nor do I know why schools pack in all that stuff at the end.  Don’t they know Mom’s want to spend the last few days of school napping to rest up for the summer ahead?  These days were then followed by the end of the school.  Such happy children, such distressed moms.  Ultimately that all lead to three children at home all day long, an adventure I think is fairly unnecessary.  I would just like to put in a supportive plug here for all schools to go year round.  Please!

So here we are 3 weeks into summer break and what are we doing?  Vacationing in Florida!  And to get here we flew on a plane, which is something 2 of our children had never done before.  This was a grand adventure that I enjoyed thoroughly.  It entailed tears and laughter on my end.  We had to get up at 4 a.m. to get ready and I can honestly say I don’t think I’ve ever seen the kids move so fast – eat breakfast, put on clothes, brush teeth, comb hair, get shoes on, get backpacks – this all happened in nearly a blink of the eye.  Their excitement was overflowing.  Everything was so new to them and they just took it all in with wide eyes and wonderment.  The best part was taking off in that plane.  I couldn’t count how many “Whoa!” I heard.  Or “Look at that!”  It was so much fun.  Watching their little faces made me tear up.  To be a part of that is something I will never forget.  We of course had to take off and land 2 more times so it was quite the exciting day.  Jackson was a traveling champ as usual.  The kid is an old hand at traveling on the plane.  My only regret is that I didn’t get him a frequent flyer number when he was born.  Ten trips to Florida, one trip to Connecticut, and at least 5 trips to Denver could have added up to some good flyer points! 

Last month the kids took swimming lessons in preparation for our trip to Florida.  My husband’s parents have a swimming pool and I wanted them to have some experience in the pool before we came here.  When we arrived at Grandma and Grandpa’s, at 10:30 at night, the requests to get in the pool began.  A week later they are still going strong.  They are barely awake and out of bed when they ask “Can we get in the pool?”  Whenever the answer is no they get the most deflated look ever on their face.  You would think I just took Christmas away.  The great thing is that they are getting so confident in the water and learning to love being in the water.  They both failed their swimming class because they weren’t confident.  Progress is being made!   Jackson on the other hand loves the pool so much and is a giggling mess whenever he gets in.  He loves the water and he especially loves being around all the other kids in the pool.  Lots of splashing, moving around and laughter is what you experience when you walk outside here in Vero Beach, Florida! 

The next big adventure was watching the kids see the ocean for the first time.  Another tearful moment for this mama.  Their screams and laughter said it all.  They love the ocean, sand and “treasures” (i.e. seashells).  Endless fun abounds when we head to the beach.  The beach and ocean just happen to be Jackson’s favorite place on earth so there are no complaints from him when we are there, only pure utter joy and the salty taste of the grand old ocean.   

Most people who come to Florida come for one main attraction, Disney World.  That was my destination on my first visit to Florida.  I thought it would be awesome to surprise the kids and take them there one day.  Sadly, Disney must feel their 2013 first quarter profit of $383 million is not enough so they have outrageous ticket prices.  Ultimately making it unaffordable for regular folk like us.  Just to get into the park would have cost us $454!  That’s a bit much for one day of entertainment.  Shame on you Disney!  It definitely is not the happiest place on earth.  Instead we surprised the kids by taking them to Lion Country Safari, an outdoor drive through safari in West Palm Beach.  The kids loved it!  Who doesn’t love seeing monkeys, giraffes, lions, zebras, hippos, camels and African deer.  Since Sylvia loves animals she was in heaven.  It was a great day and another first – exotic animals.     

Oliver Wendell Holmes said “One's mind, once stretched by a new idea, never regains its original dimensions.”  My kids have had their world opened up to them on this trip.  I don’t think their minds will ever regain its original dimensions and I think that is awesome!

Summer Plans

It’s that time of year again, the end of the school year.  Anticipation is high in our house right now.  The counting down of the school days, the declaring of how they plan to spend their summer and the joy of being able to wear shorts.  It is the best of times (for the kids) and the worst of times (for the mom).  I have always dreaded this time of year because Jackson hates summers so much.  That kid loves school and not being able to go to school has historically made our summers fairly miserable.  I think this summer is going to be better though (fingers crossed).  Having Daniel and Sylvia around will hopefully keep Jackson occupied and happy.  Of course our two week trip to Florida and the beach (Jackson’s favorite place) also helps.  But planning a summer with three kids has been, how shall I say, thorny, complex, intricate. 

Having a special needs kid who has a lot of therapies and doctor appointments is difficult to manage sometimes.  Now add in two other kids who have counseling, behavior therapy, summer camps, day care and doctor appointments and all of the sudden the summer turns into a logistical nightmare.  I have spent every day of the last week staring at the calendar trying to figure out how to get it all to work.  After 5 days and numerous post it notes I think I may have figured it out, somewhat.  So much for a laid back, hanging out kind of summer. 

The kids have never done summer camps before and they are so excited.  I let them each pick two camps and them being able to decide on their own was a big deal for them.  It is something they get to have some control over which I know means a lot to them.  This summer Jackson is going to his first ever summer camp.  Spokane has an amazing Parks and Recreation department that has an even more amazing therapeutic recreation program for people with disabilities.  Every summer they have a Funshine Day Camp that will accommodate children with special needs.  I am so thankful and excited that Jackson is going to get to do something like that.  It’s going to be a great experience for him.  Sylvia and Daniel both picked Camo Camp.  A week of building forts, tying knots, and archery.  Then Sylvia picked a Science camp and Daniel picked Mini Hawk Camp (baseball, soccer and basketball).  Should be a fun summer for everyone.

I may be spending the summer in my car driving children around but it will be a summer I know they won’t forget and that makes it worth it.  Besides “Children think not of what is past, nor what is to come, but enjoy the present time, which few of us do.”
-Jean de La Bruyère

Acceptance

When we began spending time with Sylvia and Daniel I was concerned about how they would react to Jackson.  I just didn’t think I could bring new children into our home who didn’t adore Jackson and see him for who he really is, instead of his diagnosis.  The truth is this really weighed heavily on me.  I’ve always wanted Jackson to have siblings.  I wanted him to have kids around to play with and learn from, kids who would help him and stick up for him when needed, a buddy he can have memories with.  But the kids didn’t initially warm up to him, and that worried me.  They would just kind of look at him with the “what is wrong with him” face.  They would ask questions about him but didn’t seem too interested in hanging out with him or interacting with him.  I knew it would take time for them to warm up to Jackson but it wasn’t going as I had hoped.  Then the kids moved in and they were still pretty slow to warm up.  Then something wonderful happened. 

Right after we started visiting the kids I signed up to do a Guild School school presentation at their elementary school.  I thought it would be fun for them to see Jackson and I up in front of their whole school talking about him.  Jackson went to the Guild School from the time we got his diagnosis until he was 3.  The Guild School is an amazing place and has helped so many local kids who have special needs.  Every year they have a Penny Drive and we go to local elementary schools and talk about how the Guild School helped Jackson when he was a baby, through physical, occupational, and speech therapy.  The students then bring in change to put in milk jugs to raise money for the Guild School.  It brings in a lot of money for the Guild School every year and ensures that no child is turned away if their parents are unable to pay for the therapies they need.  I love doing these presentations and talking about Jackson and Jackson loves them too.  He loves the sound of clapping and we get a lot of clapping so he is a happy presenter. 

So there Jackson and I were waiting up front while all the students filed into the gymnasium.  Sylvia came in with her class and ran over to say hi to us.  Then Daniel came in and did the same thing.  I asked them if they wanted to stand by us while we talked.  They both did.  The presentation started and the Guild School representative introduced us.  I then introduced Daniel and Sylvia as Jackson’s brother and sister.  Then I did my little talk.  The whole time Daniel and Sylvia stood next to Jackson and each side of his wheelchair.   They were patting him on the head and rubbing his arms, and holding on the wheelchair in case he tried to roll away.  After the presentation Sylvia’s class stayed and Jackson and I went over to talk to them.  They had lots of questions about Jackson and I let Sylvia answer some of them.  She told them about his special bed and how he likes to kick the sides, which is noisy!  She told them he rides horses (super cool in the eyes of all those kids), has swimming therapy (more cool), and has swings in the basement (way cool).  The kids in her class really loved Jackson and I could see Sylvia realizing how it was pretty awesome to have Jackson as a brother.  When I picked them up from school that afternoon they both thought standing up in front of their whole school with Jackson was the best thing ever.  The loved it!  Then Sylvia said some kid had come up to her after school and said “Jackson is really cool.”  And from that day forward Jackson was no longer a weird mystery to them.  He was just their little brother.  They bring him toys, they play with him, Sylvia has even brushed his teeth and helped give him a bath.  Daniel likes to tell me what Jackson is thinking.  Sylvia even said to me the other day “How could anyone not like Jackson?”  Daniel likes to pet Jackson’s hair, he thinks it is the softest thing ever.  He’ll just sit there next to Jackson talking to him and petting him.  Jackson has loved the extra attention and lights up when the kids are around.  I still think we have a ways to go with them truly interacting and spending time with him, but they are getting there and it has been amazing to watch their story unfold.  As William Shakespeare said “To climb steep hills requires slow pace at first.” 

Exposure

When I was growing up there was a boy in my class named Glenn.  Glenn had special needs.  Actually I think he might have had cerebral palsy but I’m not sure.  Glenn was never in any of my classes, he was always in the special education room.  Sometimes I would see Glenn in the hallways or sitting in his classroom, but that was the extent of my exposure to him.  I remember saying hi to him a few times and just getting a smile or a look from him.  I was curious about Glenn but he was so different I wasn’t really sure how to act around him.  It is really kind of sad to think about now.  Since having Jackson I have thought about Glenn more and more.  I wonder what his actual diagnosis is, if he was born with it or it was a result of something else, I wonder about his parents and their journey of raising Glenn.  I grew up in a very small town in the mountains of Colorado.  There were only 50 some kids in my class and they came from about 5 different towns.  Small town usually means not a lot of services for a kid with special needs. I wonder if there were even things such as physical and occupational therapy for Glenn.  One vision I can’t get out of my head is Glenn walking across the stage at our high school graduation.  He got a standing ovation and I remember thinking it was so cool that he graduated with us.  I wish I could go back in time and watch his parents that day.  I have no doubt there were tears and pride on their faces.  Most of all I wonder where Glenn is today and what his life is like. 

Recently, Jackson and I went to an elementary school to talk at an assembly about the Guild School (the school Jackson attended until he was 3) and to tell them Jackson’s story.  I love doing these presentations.  The kids always respond so positively to Jackson.  I was talking to them about how it is okay to be different, how if we were all the same that would be boring.  And that no matter how different we may all be, we all want the same kind of things – to be loved, to have friends, to be able to do the things we want to do.  This is always an important part of my speech to me because I want these children to know that Jackson is a person too, that he is just a kid like them.  I hope that by doing that they will someday remember Jackson when they see someone different than them and instead of being rude or bullying them, they will have a better understanding of and compassion for that person. 

I think the best thing we can do as parents is to expose our children, at a young age, to all kinds of people.  People with different colored skin, people with disabilities, people who have different interests than us, people who have different families than ours.  When children learn at a young age that people who are different from us is an okay and normal thing, they will grow up to be kindhearted and thoughtful human beings.  They won’t stare or be afraid when they see someone in a wheelchair.  They won’t grow up thinking different is bad.  And that is good.

I don’t know who wrote the following poem but I think it is fitting for this post. 

KIDS WHO ARE DIFFERENT

Here's to the kids who are different
The kids who don't always get A's.
The kids who have ears twice the size of their peers,
And noses that go on for days....
Here's to the kids who are different,
The kids they call crazy or dumb,
The kids who don't fit in,
with the guts and the grit,
Who dance to the beat of a different drum....
Here's to the kids who are different,
The kids with the mischievous streak,
For when they have grown,
as history's shown,
It’s their difference that makes them unique.