Monday, July 21, 2014

The Kid Who Is Rarely Mentioned



Is there any parent out there with a differently-abled child who watches how typical children react when your kid is around?

(FYI this is a given. OF COURSE we do.)

Honestly, most kids realize very quickly that Jack is different and maybe they stare a little and then they go on their merry way. I have yet to get the kid with tons of questions and I have only gotten the rude kid once. Trust me, you will always remember the first rude kid.

I know it will happen more as Jack gets older and I have read enough on how to deal with those situations that I feel pretty confident how to respond. From what I have heard from seasoned parents, most children feel comfortable once they realize that non-typical kids have interests and like fun things, too. For instance, Jack loves boat rides (the new, best thing ever!). Jack loves the wind in his hair and to go fast. He also really likes Sesame Street. See what I'm doing here? You find some common ground. You tell them that Jack might walk differently and he may not be able to say many words, but he sure loves to play catch! And then if you hand the kid a ball and invite them to play with you, even better. Bonus points for awesome parents of typical kids who take the initiative in these conversations.

But friends, there is this whole other kind of kid that rarely gets mentioned. This is the kid who when seeing Jack arrive, runs full-speed to our car and yells out "Hey Jack-man!" Then later, he notices Jack playing with his toys and reading his books and sits down next to him to play. This kid doesn't give up after a minute when he realizes Jack is not responding in the way he'd like. He is fine to just sit there with him. He is comfortable. He talks now and then, but really, is happy just being there. He doesn't ask questions or need direction.

I was thinking about this little friend and you know what? He has always been excited to see Jack. I don't know how else to describe it, but he is an innately kind child. One who is not afraid or shy and doesn't need any prodding from his parents.

This is the kid who is rarely mentioned. I hear a lot about how kids are mean to those with special needs. I hear a lot about getting left out and not included as the years go on. It comes with the territory of kids growing up, becoming aware, and just doing what humans do. I understand why bloggers write so much about it, because it just hurts.

But then there are the kids who are just kind, plain and simple. No strings attached. No "what can you do for me?" in the relationship. I pray Jack always has a friend like this in life.

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Wednesday, July 9, 2014

Our First Family Vacation

The minute we walked into the cabin, Jack got down on the super soft carpet and did his happy dance. Jon and I looked at each other and just had to smile. This was not the reaction we were expecting. Just the previous week, Jack and I had gone over to a friends house and he cried for an entire hour, wanting to leave. He has been overly anxious since a medical procedure last winter. New and confined places are more and more becoming a no-go. The days leading up to our trip we prepared ourselves that we may have an unhappy little guy on our hands. Thank God, we were so wrong. 

The minute I saw this cabin on the lake (while searching online in the freezing cold of January), I knew. It just felt like like "the place" where we should take our first family vacation. Friends, Jack took to this little slice of heaven immediately. I don't use the word perfect very often, but the days we spent at this magical place felt like it just couldn't get much better. 


Our cabin (which will always be called "ours" from here on out) is nestled right on the shore of Flathead Lake in northwest Montana. Things that made it perfect for Jack? Everything. Seriously everything. I won't bore you with all the teeny tiny things, but the bedroom, family room, bathroom, kitchen, and deck are all located on one floor. Easy and safe access for a kid like Jack. Plus the deck and stairs leading down to the dock are baby proofed, which was just a bonus for us. Boy could wander the whole house and I didn't have to keep an eagle eye on him. 

You guys, THE VIEW. Every window had an incredible look out at the turquoise blue waters. 


Since our boy has been fascinated by the water lately, we took him down to the shoreline first thing. 


Lots of skipping rocks and laughing uncontrollably happened on our little beach. 


The first night of our vacation, Grams and Cheeks came for dinner. Jack was so happy to have his favorites there.


This next one may be my most favorite picture of all time. Sigh.


It was Cheek's birthday!


And this. Best friends, I tell ya. 


Trying out the kayaks. 



The paddle boat was perfect for Jack. He adored it. He would cuddle right into us and watch our legs move the boat. He loved getting splashed by the water and the canopy provided perfect shade. In fact, as soon as Jack got up each morning, he wanted right in the paddle boat. We ended up going for a ride every few hours.


We settled into lake life quite nicely. In particular, I loved early mornings from the deck, overlooking the water. The lake was so still. It was tranquil. I would grab a strong cup of coffee, some breakfast, and a good book. Heaven. 


Jack would often join me with his own reads. 


Between playing in the water and on the deck, Jack would just sprawl out on the comfy carpet with a favorite movie, window and deck doors open to catch the lake breeze.


I think what I will remember most about this vacation is how relaxed we all were. We spent time doing the things that we love. 




Reading. 

Cooking. 



And playing, of course. 



Being away from the daily rigors always puts it into perspective for me. I got to spend five days with my two most favorite people on this earth. No agenda. No worrying about this medical appointment or that therapy. Jon and I are notorious planners, but for these precious days, we left things wide open. It was the best thing for us, for our family. 


Jon would head out for a long kayak each morning and Jack and I would sit on the dock, just soaking it all in. 


It's safe to say that we heart this little place. 



This little slice of Montana beauty.


And a happy boy. What more could we have asked for? 



The last day we realized we should get a group shot. Self-timer for the (minus 1?) win. Jack was too busy playing to be bothered with a family photo and who could blame him?


Until next time.


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Thursday, June 19, 2014

The Story I Want To Share

We can tell within seconds.

Amid a conversation about Jack, a confused look crosses a face. Their eyes glaze over. Sometimes they stop listening.

They feel uncomfortable and we can see them wanting to flee the topic. They don't want to hear anything outside the "Jack is doing so great!" genre. So we tailor our explanations.

The reality of special needs life is that many just won't get it and certainly, some won't want to hear about it.

Even though we have been writing about our life with Jack for over five years now, there are still people in our community that don't know much about him. Maybe they heard in passing that he was born premature. Or that he's had some surgeries. But when we bring Jack up in conversation, how much do they really understand? How much do they want to understand?

Unless someone has followed along with us on this journey or they have their own child, family member or friend with significant special or medical needs, then their access to that well of knowledge may be pretty slim.

For sure my knowledge base was small before having Jack. There were a few individuals with special needs at church growing up and a couple at my school. That was it. I know it's a whole lot to ask someone to "get it" when their own life experience is limited. But ask any parent with a kid like Jack. You can quickly tell if someone cares, no matter how much they do or don't know. In fact, it is often the ones who don't demand a million answers to what makes Jack so unique that act as a balm to our soul. The ones who just let Jack be Jack. Those are my favorite people.

We had an encounter with one of our neighbors recently. Jack does not like to stop anywhere along our walk route. Well, Neighbor met up with us as we were walking by and wanted to chat. In doing so, Neighbor got quite the eyeful and earful of Jack being Jack. He was the Jack who didn't want to stop, without the ability or words to express it. Within seconds, I could tell that Neighbor understood. I quickly got a knowing, friendly look. I did not get the confused look.

Friends, there is nothing sweeter than the "I get it" look.

This is one of the main reasons I continue to write about Jack. No, I don't tell you every, single thing about him. I don't revel in talking about all his "issues". I don't expect every person we encounter to be a blog follower or to understand the intricate details about all his medical diagnoses. And I certainly don't use Jack to try and teach the world a lesson. In my own way, I am just trying to make sense of this special needs life. I connect with other parents. And yeah, maybe that will in turn make this life with Jack not so foreign to the people we encounter.

The more people who get it is a good thing. Long gone are the days when individuals with disability are hidden or defined solely by whatever box they are placed in. That is why I write about Jack. Just when we think we have him figured out, he surprises us with his amazing willpower and his stinkin' funny sense of humor. I want to tell you about Jack and his sun dance. Boy loves the sun. That is the story I want to share.



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Tuesday, June 17, 2014

Mom Goes To School: Summer Break

It's been a little over a month since I've been home from Utah. From the minute I turned in my final research project of the semester and got all my student's grades done, I took a deep breath and just rested. No textbooks or articles. No answering a million student questions. No academic anything, really. It was so good to shut down that part of my brain, the part that needed to squeeze just one more thing in. Instead, I've had time to reflect. What a year it was! This is hard to explain, but my grasp of political science as a field just blew right open last year. I had such a narrow understanding of the social sciences in general going into my program. My long absence from academia (almost seven years!) plus the rigors of being a first year doctoral student just kinda threw me for a loop. Summer break came just in time.

My summer so far? Spending hour upon hour with my boys. So many quiet and special moments at this place we get to call home. Montana is incredible during the summer. Jack and I have a slow and easy schedule during the day that consists of getting up real early, going on a whole lot of walks, and just playing all day long. Then daddy comes home and we have so much fun making dinner together. Jack is obsessed with cooking these days. The sizzle in the pan. The heat. Everything about it. Then Wheel of Fortune, of course. I cherish these summer days.

Beyond Jack, I've had time to spend with friends that I didn't get to see near enough of last year. I have read easy peasy books just for fun. I have watched a lot of movies and we even binged-watched Breaking Bad (finally!). I've started to bake again. I feel like I am finally getting back into the swing of real life.

Slowly but surely, I am feeling ready again. I have my to-do list for what I want to accomplish this summer. It's not very long, but I have a couple goals. One is beginning to collect my dissertation materials. My father is a treasure hunter. He likes to go to thrift stores and spot the needle in the haystack. Knowing this, I sent him on a mission to find any old book related to Montana politics, history, or Western U.S. political history in general for my doctoral research. What he's done is started me off with one of the best collections of rare Montana political books that I could have hoped for. Thanks dad!

The key in all this will be figuring out how I can juggle the summer goodness and a super active Jack with the research that I want to do the next few months. I can barely get through reading a blog post without a Jack interruption, so this will be interesting to see what I can do from home. Always a new adventure, right?

Our favorite walk of the day, right when the sun peaks over the horizon.
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