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12 Times my Kid Was Way, Way Cooler Than North Carolina

Jaycee Kemp1 Comment

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A1 got off the bus last week and immediately came to find me.  This is unusual as it is typically the other way around.

“I hate riding the bus.  I try to keep my headphones on so no one will bother me….but they even make fun of that” he blathered.

A1 is not one to seek out trouble, but he has no ability to not verbally respond to it when it comes his way.  Impulsiveness and rigidity.  Such is the way of  ADHD and Asperger’s and as he gets older, he gets more and more aware of this but doesn’t seem to have the impetus to make it stop.

“It wouldn’t be so bad if even one kid stuck up for me or was on my side. B was making fun that I couldn’t run all the way around the track in gym“.

He went on and on. And I nodded imagining A1 trying to explain at length why his Keens rubbed against his heels or how he was out of breath….stoking a fire that he did not know was smoldering.  I did not hear much else until the end.

“….and then B said to me ‘at least I’m not a transgender.”

I stood for another moment gathering my thoughts and wondering what A1 was thinking as I just stared at him floundering to find something to say.  I took a slow, deep breath, “and what did you say when he said that?”

“I told him ‘If you think I’m cute, you can just say so…..’”

Bam.

He didn’t deny it.  He didn’t admit to it.  He didn’t give the other boy the power to use that in a way that would have inadvertently bullied anyone else in earshot.  He shut that shit down.

I am sure if my child had the ability to remain quiet, he would.  However in that moment I have never been more proud of him.   He is potentially the coolest person I know and possibly not as vulnerable as he feels….and it’s not because he is 12 and has shoulder length black hair with Manic Panic lizard green tips.  He ultimately understands what it means to be transgender….to be different in a way no one gets.  He also doesn’t understand what the big deal is and why “adults can’t get over it either”.  He had several options of comebacks and told me he recognized that given the slurs thrown his way there were many cruel things he could have said but chose not to.  A1 is confused for a girl a lot.  Though we talk about it, he tells me he is not transgender nor does it bother him when people think he is a girl. He says he knows it goes with the territory of having long hair.  My Aspie tells me he is lonely, he tells me he knows people think he is weird…but he lives his life being true to himself, doing his own thing, wearing what he wants…and unapologetically giving zero f’s. And one day…when adolescence has passed him by I am certain he will come out the other side being a better person for it.

So North Carolina…in light of your clamoring last week to pass the adult equivalent bill of bus bullying LGBT people…my 12 year old with developmental issues gets it…why don’t you?  While we are at it…here are 12 other ways he is cooler than you:

  1.  He has mad Etch-a-Sketch skillz

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2.  The element of surprise

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3.  He also sets his own agenda.  But way better than you. 

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4.  Visual cues for piano practice?  He scoffs at those….

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5.  He tells it like it is.  And obviously is learning something in language arts on occasion.

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6.  He expects quality.  And he will wear it wherever he wants.

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7.  Oh.  He’ll do his homework alright…

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8.  This

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9.  Sure, he’ll write your silly story….

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10.  years and years of fashion….(not to mention his real dad is Tommy Lee)

 

11. Upper hand.

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12.  Discussed. 

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Autism Awareness Month. W is for What It’s Like

Jaycee Kemp1 Comment

Day 23

W is for What It’s Like

“There is grandeur in this view of life…..from so simple a beginning endless forms most beautiful and most wonderful have been and are being evolved”—On the Origin of Species, Charles Darwin.
A few years ago I attended the funeral of a friend who suffered and died much too young. He was a scientist-a biologist, an activist, a researcher who was respected in his field and likely the smartest person I knew. He was also pedantic and opinionated with a biting but funny sense of humor. This combination engaged even the most simple of us but most of his friends were equally as interesting and I got to numbly stand in a room in Vermont in the dead of winter surrounded by them. “What’s it like?” a friend of his asked me…”having a child with Autism?” For a moment I just thought I was not in the mindset to answer that question but quickly realized I could NOT answer because in all the years I’d not only never been asked that but also never considered it either. It was the kindest thing anything had ever asked me about A2 and perhaps it was the somber tone of the day that rendered me without speech (which if you know me well does not happen often) or maybe I had always been so caught up in the action oriented nature of having a young child with autism that to contemplate that would stop me in my tracks and make me crumble….or perhaps in the moment I felt guilty for even thinking I would crumble and considered myself so lucky to still have those I loved around me regardless of circumstance while my best friend was grieving the loss of his partner……so I excused myself instead. What I have decided over the years is that it is a bit like A2 contemplating this fountain. It is weird and fascinating and wonderful and I have no idea how it really works or how it got there. I notice every single droplet from the ones that predictably slide down the posts to the ones that spit out to collectively leave me standing in a cold puddle over time that leave my toes numb without notice until its too late. There is no warning when the water will turn to an exciting spout of beauty creating a soft rain and visible rainbow or when it will create bursts of rainy arches that I cannot immediately escape leaving me far more drenched and colder than I want to be and on opposite sides of the fountain from whomever was standing near me. So Trevor…..that is what it is like……Thank you for asking

Autism Awareness Month. V is for Village

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Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.

Autism Awareness Month. T is for Teachers and Therapists.

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Day 20

 T is for Teachers and Therapists

112. A2 has had a total of 112 different teachers and therapists in his short 11 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 105,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact on my entire family’s lives and for all of them, I am grateful.  When reading this post today–please help me help a few whose lives are difficult right now–Debbie Jo Pierce (pictured above) was one of the first paraprofessionals to work with A2. She has given most of her life to helping others and is ill with cancer leaving her unable to work and without income. Please consider today to donate to a Gofundme account started for her to help ease her burdens. Also, if you are of the praying sort, please like the FB page for Pray for Rachel. Lauren Sullivan, a favorite home team therapist of A2 15 year old sister Rachel is in Nationwide Children’s Hospital being treated for cancer. Rachel is her heart and soul –a child of strength and character. I am only one person–Christmas gifts and thank yous always seem so trite in the face of what we ask of the professionals who help us. Can you help make an impact for 2 of them today?

**This post has been updated since the original post  in April 2015, Debbie Jo passed away..taken too early in this world, yet someone must have felt her job here was done….and what a job she did in a quiet world where her time impacted so many.  Rachel Sullivan has made a full recovery and is enjoying school, family, sports and her community.

Autism Awareness Month. S is for Skeletons

Jaycee Kemp2 Comments

Day 19

S is for Skeletons

(edited and reposted from 4/2015)

In a way we are luckier than many in that when you meet A2, it is clear he is generally sweet and happy. It is also clear that he is a 10 year old with limited language and an intense fascination with things like dangling light bulbs and garage doors. This combination is like a free pass since it would be weirder to not acknowledge it, I get to talk about it.

But just a little bit.

It’s not exactly like airing dirty laundry. It’s more like airing dry cleaning–the-sort-of-dirty-nicest-silk-dress-in-my-closet kind of laundry. Let’s face it, there are socks and skivvies in all of our hampers we wouldn’t dare let hang out on the line in the backyard. For us, in the best of our worst case scenario of autism, A2 can make autism seem almost ethereal. And he IS inspirational. Despite his challenges he plows through life with a joy and wonder as if even the slightest thing is something he has seen for the first time. When we hire aides to work in our home, I warn them in advance that their work space is located in the darker cubicle of my life. While it can be a place full of love and ideas and fun, it is also the space where anxiety, anger and compulsiveness roll up like dust bunnies in the corner. They are invited into that laundry room to watch me fold those things we can’t hang outside to dry. They get to see the worst of the best case scenario and of course are free to form opinions or quietly judge. These young women know more than my “inner circle” of friends and it is not a comfortable place to be, but I let it happen for the benefit of my child for whom alone I could not be successful.

Why would I focus on this today when I have shared more about what it’s like on social media than I ever intended? Because we are “out” and wholly connected with the special needs community. There are revolutionaries who have adult children and walked with a yoke of all the things autism brings around their shoulders before anyone knew what autism was and never got the help they needed, so they created it for us. There are families you may know who can’t take their children in public for fear they won’t be safe to themselves or others. There are those who walk among us invisible–who closely protect their tangled criss-cross of laundry lines for fear of being judged, or worse yet, for their child being judged over something beyond their control. These are the people who might need to be seen and understood the most because they are not likely connected to a community who will understand. This is also autism.

Awareness is not just about what we do see, it’s also about what we don’t. If you are a revolutionary or an invisible family, reach out to me…tell me you are here….and if you are feeling brave, let me tag you on this post.

Autism Awareness Month 2015. K is for Kismet.

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Day 11

In the month of our 15 year anniversary, I can confidently say we have embarked on a journey neither of us could have expected.

In some ways I wonder if our trek is easier than others since we never had musings of what our unborn children would be like or what kind of parents we would be.

…or if we would be parents at all….

I believe in a judicious balance between predestination and free will. Sort of like walking into a movie complex. You can pick the movie you will see, but once you choose it, the plot and ending remain the same. It is up to you if you decide to leave the theater to get popcorn or simply decide that movie is not for you and you should have never listened to Siskel and Ebert’s reviews to begin with.

All marriages require a gentle balance between cohesiveness and independence….and especially with families like ours. Stress is a constant, sleep deprivation a given, and child rearing? Well, throw out everything you ever thought you knew about that. Not everyone can do that.  Usually, the stronger is left holding the bag on their own.  I know too many families like that and watch in awe as the parent left behind carries the weight of her world.

Through thick and thin we give each other the space we need, recognizing we are in for the long haul.  Our children are who they are supposed to be.  We make the same mistakes as every other parent in every other union, but with the knowledge we must be united as forever parents, even long after we are gone.  And for that, perhaps we are luckier than most.

Day 3 2015. C is for Coping

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Day 3

In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.

Day 1. A is for Aides

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Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.