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Neurotypical Free Planet Please 

7/19/2013

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When the school bell rings on that warm summer day in June signaling the end of yet another school year, moms everywhere are smiling. No more homework headaches, no more panicked "you forgot to add money to my lunch account and now I'm going to starve to death" phone calls and no more frantic chases to catch the school bus after watching just one more minute of The Today Show. Yes, summer is a glorious season and a call for rejoicing, until it hits you....especially if you are a stay at home mom....the kids will be with you 24 hours a day. And that my friend is the moment when the frantic search for summer camps begin. As many camps as you can find, as many camps as you can afford. While the search for the perfect camp turns into a full time job, you assure yourself that the structure and routine will be "good for them" even though the little devil on your shoulder whispers, "I thought you couldn't wait to have them home." As you flick the little devil to the floor, you assure yourself that these camps are not about making your life easier, less chaotic and less loud, these camps are designed to enhance your child's summer and remove their glued on faces from the television screen, the computer screen and the iDevice screen. Guilt gone...until the little devil stabs you with his pitchfork.

Back in the old days, when I was a kid, my parents forced me to go to our local township recreational camp to make crafts, play games, and pray. No, it was not a church affilitated camp, but I spent a lot of time praying that my bladder and bowels were strong enough to "hold it" so I wouldn't have to use the camp porta potty because almost daily that thing "magically" ended up on it's side. Kids are really quite horrible. There weren't a lot of camps to chose from back in the day, so my township rec camp was my camp experience. Thanks Mom and Dad. My how times have changed. With today's motto of "My Kid Has to Be the Best", there are camps for just about anything your child wants to be the best at. There are sport camps, craft camps, spy camps, math camps, science camps, Lego camps, theater camps, CSI camps, music camps, art camps and on and on and on. Many of these camps also provide indoor plumbing so no porta potty or bladder and bowel strengthening is needed. Kids today have no idea how good they have it, but boy parents sure do.
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Sadly, I'm no exception to the "My Kid Has To Be The Best" in addition to, "My Kid Has To Be Out Of My Hair For At Least Three Hours" (shut up devil) camp mania and my kids have attended camps they have loved and camps I convinced them they would love.  Kyle has spent many hot, sultry days on a baseball diamond at the peak of summer. One year, he even went to an overnight baseball camp in Williamsport where the Little League World Series is played. Playing on "that" field, where he watched many games from the stands and from his family room television was a dream come true. Kyle loved it and I spent most of the week worrying that somehow he would accidentally ingest peanut butter (he is severely allergic) or fall off the top bunk and crack his head open. The little devil chuckled as I spent many sleepless nights worrying needlessly about my first born. Par for the course, my worrying was all for not as my boy not only survived camp, he loved it and I have to admit, seeing my son playing on the baseball diamond in Lamade Stadium was pretty freaking cool.

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Emma has gone to dance camps, cheer camps, craft camps and cooking camps. Yes, she is only 6 years old, but I swear she wanted to go to every single one (not only have I flicked the scowling little devil off my shoulder with his "seriously?" face, he is now squished under my shoe). Emma is my social busy bee and she loves spending time hanging at home with her fabulous mother in the summer, but if she were being AWEnest, I think Emma would tell you that she prefers hanging with a posse of girls to good old Mom. Camps of all types suit Emma just fine, but her favorites have been cheer camp and dance camp where the ultra cool high school girls are the instructors. The pinnacle of these camps come on a hot, late August evening when Emma gets to perform her routines and cheers with the so much cooler than boring old Mom high school girls at the first home football game of the season. My girl LOVES an audience and seeing that tiny tot run across that gigantic football field shaking her booty both terrifies me and humors me.

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Needless to say, Ryan has no interest in sports camps, dance camps, cheer camps or craft camps, however he loves attending math camp and Knex camp every summer and like any good, obsessive I Want My Kid To Be The Best mother, I have been known to wake up at the crack of dawn to ensure a spot for him in these camps. This year, I dropped the ball, shut off the alarm and missed a Knex camp spot and yeah, I heard about it....for a month. I was berated for "destroying his summer" and the irony of this was the teacher who conducts the camp told Ryan "Don't feel bad Ryan, we are doing the exact same things we did last year" which of course is precisely why Ryan wanted to go again. Sigh. Thanks to the Knex camp debacle and no beach trip this summer Ryan has told me repeatedly that "this summer is not living up to my expectations". Like any compassionate mother, I told Ryan maybe he needed to lower his expectations, and find something constructive to do besides guilt his beloved mother. Then lo and behold in the blink of an eye, it was time. The peak of Ryan's summer (since I "destroyed" everything else) had finally arrived. Friendship Camp began and saved us all.

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Ryan has been attending a Friendship Camp for years. No, this is not a camp where kids sit around making friendship bracelets, riding horses and holding hands around a campfire while singing Kumbya. This is a camp for kids diagnosed with an ASD or some other type of different ability that makes having and being a friend difficult. This is a camp where kids learn to look their peers in the eye, call their peers by name, initiate conversation and respond appropriately with a peer. A successful camp week is not determined by a child's rope knot tying, his equestrian skills or his curve ball, a child's progress is measured by whether or not they smile or laugh at appropriate times, if their brain and body are "in the group" and if they have learned to take perspective of their peers. All of these skills are important in the quest for The My Kid Has To Be The Best Camp, but the best lesson Ryan has taken away from Friendship Camp is that losing a game really isn't as bad as the apocalypse and understanding what it really means to be a (Warning, I'm going to say the F word) FRIEND. This camp was never on the My Kid Has To Be The Best Camp list and it's not exactly the camp I ever dreamed my kid would one day attend, but I have loved Friendship Camp, the glorious counselors and the AWEsome kids that have enabled my son to feel The Best.

When a child has an Autism Spectrum Diagnosis, Friendship Camps and Friendship Groups are essential. Unfortunately, "friend" can be a dirty word for kids with an ASD because social deficits is a key feature of autism and making friends can be difficult. Many kids with an ASD struggle picking up social cues because they don't recognize a lot of facial expressions and body language. For example, Ryan is very aware of my extreme emotions, in fact at times I think he is somewhat intrigued by them. When Ryan believes I have heard or seen something that will make me sad, he literally gets all up in my face to see if I am crying. Sometimes my tears bring Ryan to tears (yes, kids with autism have empathy oh yee uneducated websites, sometimes they just express it differently) and sometimes he smiles almost like, "aha, I knew you'd be crying!". In complete opposite moments when my head spins around and spittle comes flying out of my mouth while screaming like a raving lunatic, Ryan is very aware that anger is the emotion of the moment, in fact when he sees my hideous transformation coming he often says, "Don't start!" Some body language and facial expressions, like steam coming out of my ears and my nostrils flaring like a bull, Ryan can absolutely pick up on, but facial expressions like pride, confused, or embarrassed he does not pick up on so easily. Most of us neurotypicals learn these social cues by observing others, but autism has a way of blocking this observation for many kids on the spectrum. 

Even though Ryan has told me numerous times that he has no friends and that his lack of friends does not make him "sad at all", Ryan still needs to understand how to have a friend and how to be a friend. Maybe Ryan's lack of desire for a friend is because he AWEnestly does not care, or maybe it's because friendship is hard and being alone is easier, safer and it greatly reduces the chance of rejection. If Ryan struggles to read a friend's emotions, it's hard to determine if that friend is shocked or amused by Ryan's exact mimic of Angry Birds so it's difficult for Ryan to figure out what to say or do next. Then throw in a heightened sensory system where filtering out background noise is next to impossible, while trying to remember how to greet and talk to a friend, it's easy to see why Ryan and kids like him prefer to be alone.

The social skills it takes to have and be a friend are needed in other areas of life and will be invaluable to Ryan as he becomes a young man and Mama Bear isn't always around to protect her little cub. Compromise, empathy, compassion, understanding and perspective are all traits of being a good friend, a good student, a good employee and a good human being. Although these skills may not exude out of Ryan's pores, he has the cognitive capacity to understand the importance of such skills and try to embody them or at the very least, try and fake it. 
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Although Denial and I have gone our separate ways, we still cross paths occasionally. Just this week we were in the same parking lot while I dropped Ryan off at Friendship Camp. As I watched the other boys file in, some seemingly more affected by autism than my son, Denial sidled up to my car window and said, "Does Ryan really need to be here? Wouldn't it be better to have Ryan in camps with neurotypical kids so he can learn how they play, interact and socialize?". I hated Denial and wondered what I ever saw in her in the first place. Denial did however strike a chord. If I'm being AWEnest, I have wondered if putting Ryan in a camp with other kids on the spectrum helps him learn appropriate, neurotypical social skills since many of the kids have similar struggles. Then I thought to myself, Ryan enjoys coming here, he is happy and he has the support of wonderful occupational therapists and speech therapists guiding him and prompting him when he needs help. How the he** does Denial always worm her way back under my skin?! After I told Denial to shut up and ran her over, I decided, for the last time (yeah, right) to stop listening to Denial and ask the one person who would know best, Ryan.

After leaving camp one afternoon, I asked Ryan, "Do you like going to Friendship Camp?" and he responded, "Of course I do, why wouldn't I?". We discussed how Ryan seems to enjoy the kids at camp more than his classmates at school. And what my wonderfully, smart and fabulous boy said to me made me realize that no matter how convinced I am that I no longer need Denial and Clueless in my life, they will always be lurking in the shadows waiting for those moments where regardless of the depth and unwavering love I have for my son, I will never quite fully "get" him. Ryan looked at me, which typically doesn't last long, and said, "The kids at camp are easier to be with...they are more like me." And there it was, the AWEnest truth. They get him, and Ryan gets it. As much as it occasionally still stings a little that my son's face is included on a sheet of paper sent home from camp with every child's photo on it with their names proudly displayed underneath so all the boys can learn each other's names, Ryan's beautiful awkward smile does belong there. Ryan belongs at that camp because for a change he actually feels like he belongs and that, my stupid ex-friend Denial, is what matters. 
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I once read a novel about a boy with Asperger's Syndrome (an ASD) entitled "the curious incident of the dog in the night-time" by Mark Haddon. The story was great and I thoroughly enjoyed the book, but one part of the story has always stuck with me. The main character, Christopher, recognizes that he is different and he believes he would be much happier if all the kids like him lived on their own planet, or better yet, if all the nurotypical people (or people not like him) went and lived on a different planet. Christopher believed life would be so much easier if the planet was inhabited by only people like him because he would no longer have to worry about recognizing emotions, remembering the proper way to greet someone or carrying on a conversation about a topic he could care less about. To Christopher, and all his new inhabitants, this new "just like him only" planet would be utopia.

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Maybe this is why Ryan loves Friendship Camp, he is on his own planet with his own kind. The aliens, with their undecipherable facial expressions and body language, are off making small talk with other aliens who understand them somewhere else. Friendship Camp is an escape into a world more easily understood with kids who "get it". Ryan may not spend time at camp praying he won't have to use the porta potty like I did (there is an indoor toilet), but I can't help but wonder if he ever prays that we aliens will one day understand that there is nothing "wrong" with how Ryan and kids like him think, talk, and express themselves. There is nothing we aliens need to probe at and "fix". Those living with an ASD just want to inhabit the same planet as the rest of us without feeling like an alien themselves. In fact, many of these kids think we neurotypicals are the ones who are weird and could use a little probing and fixing.

As for this mom, who happens to need a whole lot of fixing in various departments, I try not to worry whether this camp or that camp is right for Ryan. Just like a mom of any neurotypical child, when your kid hops in the car you don't immediately ask, "Did you perfect your curve ball today?" or "Did you learn how to dance like Beyoncé in three hours?" or "Did all the kids seem as high-functioning as you?". No, whether the camp was your idea or your child's, whether it's a sports camp, a dance camp or a social skills building camp, the first words out of your mouth, should always be, "Well, did you have fun today?". And when you get a resounding, "Yep!", you can take that stupid little devil off your shoulder and lock him in the same box with Denial and the list of the I Want My Kid To Be The Best camps, because after all, it's summer time and regardless of which planet your child feels like they belong on, being a kid during the summer is suppose to be carefree and fun. As long as that fun requires them to be out of your hair for a minimum of three hours a day. 
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Summer time bubbles are fun on any planet.
1 Comment
Julie Sparks link
7/19/2013 01:39:12 am

I have also discovered that my high functioning 18 yo likes hanging around with special needs kiddos because the pressures are less. I think some of both is the answer. :-)

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