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

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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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That one time Saturday Night Live was super un-PC and it worked…

I have no idea how to work our TV, so I have to ask my children to leave it on every Saturday evening so I can watch Saturday Night Live.  I often wonder if I watch it because it is the only time I don’t have someone whining at me that it’s their turn.

Last night between forcing my eyes to stay open and shoving a handful of popcorn in my mouth, SNL aired this skit:

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The Champ: Jonah Hill is not the Winner you think he is

For those of you not completely cued in, this is satire of something that goes on in the lives of individuals with disability all the time.

Did it make you uncomfortable?

SNL nails it. 

Hear me out on this one….

About a month ago, I read the yuckiest headline ever.

UNDEFEATED WRESTLER LOSES TO RIVAL WITH SPECIAL NEEDS, MAKES HIS DREAMS COME TRUE.

You can read the article here. 

Once I moved through being perplexed why a star wrestling champion would have a dream of losing to someone with special needs I realized what it really said.  Which ultimately was equally as perplexing and somewhat disturbing.

A wrestler with special needs was given the opportunity to feel like his hard work paid off. He won against a wrestling champ…but not really and that is now NATIONAL HEADLINE NEWS.

Since this has been so fresh on my mind recently I wondered….is the problem more about selfish people who want attention for being decent human beings or is the problem more a media and journalism issue?

I pondered this just a bit last week as well when I blogged about blogged about Donna, an unsuspecting fast food worker who treated my child with a severe language disorder just like any other patron. In our case, Donna is completely unsuspecting that so many people now know and respect her because of her act. It truly was an act that occurs far less in our world than one might think.

The sensationalizing of reporting overly heroic gestures toward those with special needs is a reflection of our world.  Hollow good deeds and instantaneous 15 minutes of fame is raising the wrong kind of awareness folks, but it sure makes people feel good and it garners thousands of clicks.

Please do not misunderstand.

Us parents are caught up in a catch-22 vortex.  Watching A2 join in to a neighborhood kickball game only to see the 9 year old neighbor run just slightly slower to retrieve the ball as he runs to his base is amazing.  But he DOES run to get the ball and he has gotten A2 out sometimes. The difference is that its not a one time thing. 

A2 can be told “see you tomorrow” as an invitation to join in again.  And that 9 year old isn’t walking around to his friends saying “Wasn’t that so nice of me? Did you see what I just did?”…at least not in front of A2 or the rest of the world to be overheard. That gesture turns a regular experience into a charitable yet humiliating one.  I love the idea of having my little guy being an equal part of the game. I even love the idea of the kind gesture of a child making him feel special during that game….I don’t like the idea of him being seen as a charity or a headline because of it.

And that is all.

Thank you Saturday Night Live and Jonah Hill for showing how ridiculous that is.

Tigers Forever.

#SNL, #JonahHill

The Tail Wagging the Dog: Tales of a Therapy Dog by a Bone Tired Mom

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Our dog is a bit of a sonofabitch.

He is playful and fun and sweet and well behaved.

Until he is not. And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog. The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone else’s beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred.

These times I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea of giving him back to the service dog agency. Wally came to us in a somewhat miraculous way. I relinquished the idea of a service dog for A2 years ago when I learned that an application was only the first step in a lengthy and costly fundraising and training endeavor–a cruel (but necessary)paradox for a middle class family supporting a child with a disability. So when I saw a post in a local Facebook mom’s group about this agency’s need for foster families for their breeding program it was a no brainer. He had been through an advanced training program, came with the bright orange “do not touch” vest (that as it turns out that as a whole people just ignore) and most importantly, neither of my children reeled away from him in fear of barking or jumping. I could get used to having to drive out to the agency on a moments notice for his doggie duty or the fact that as an intact male he has a certain
“je ne sais quoi” that at times makes me feel uneasy explaining to groups of gathering and inquisitive elementary school kids.

While this dog is not trained specifically for A2, I had notions of things. Wonderful things. He would have the gumption of a sheepherding dog and rustle A2 back off to bed at night allowing all of us a full nights sleep. He would have Lassie-like receptive and expressive language skills to alert us if A2 wandered off…or fell in a well….or were lost in a canyon. He would be A2’s best friend and would play ball, endure endless tummy rubs and kiss away tears. But alas, Wally is not trained to endure colossal meltdowns or high pitched screaming  and A2 is obsessed with Wally’s nails needing trimmed and is also wholly mortified by his noisy and explicit grooming habits.

It often feels more like they are roommates who met out of necessity on Craigslist.

We wanted Wally to be for A2, but really, we wanted him to be for us. We needed extra eyes, extra sleep and fuller hearts knowing A2 had a friend. But its not looking like this part was meant to be.

The surprise twist here is that I did not anticipate that Wally is here for A1. We didn’t see that one coming at all. I have watched A1 learn to use inflection in his voice to get him to follow a command or gain his attention. Wally’s presence is forcing A1 up out of his gaming chair to take him on walks or throw a ball or frisbee. He is quickly using perspective taking in a way I have never noticed in questions such as “Do you think Wally likes me? How can you tell?” or “Mom, I feel so bad. I wish I could give him some of my sandwich. Is this how you feel about me with my Celiac when other kids are eating gluten around me?”

My beautiful, slow to warm boy who would rather not touch or be touched is slowly but voluntarily petting, patting, feeding and cuddling Wally. Though it took me years to understand and accept that A1’s needs and worldview are just very different than mine, I have always known that forcing my motherly agenda would only reinforce his discomfort. And in a very rare moment–maybe the second time in his life just last night while watching TV he scooted closer to me on the couch, leaned in, and rested his head on my shoulder.

So Wally, you are off the hook. I will humble myself as I once again issue the world’s most awkward apology and assure the neighbors that we have no intentions of keeping their dog since you have clearly claimed him as your own just as long as you keep doing the stealthy, stellar job you were given to do here with us.

Day 26. Z is for Zenith.

Day 26

Day 26. Z is for Zenith.
26 days ago I started with something and today I end with something else. April is Autism Awareness month…something that is like some weird little carrot in our world where every day is Autism Awareness Month. I thought “we don’t need any more awareness….unless you have not interacted with the world at all in the last 10 years…everyone has heard of Autism…everyone knows someone with Autism…enough already with the awareness….”. We need to DO something to help-there are autism families far, far more desperate than mine and maybe I can help my small corner of FB understand that. But as someone pointed out to me the other day….the rest of the world perhaps has the wrong kind of awareness. This A-Z blog has morphed…transformed in social media….transformed my relationships and transformed me in ways I could have not imagined. In my house we are Sunday school teachers, basketball players, pianists and yogis…we are runners and daddies….5th graders and video gamers….we are baseball players and music enthusiasts we are writers and congregants and helpers…singers and children and future dentists. We are autism. We are you. It is the space between where we live–like that strange moment when you are still dreaming as you wake and have one foot in each of those worlds yet are not sure what is real and what is not. We teeter on the edge of worlds where we don’t quite fit because some things are left unsaid by all parties. It is the space between. I did not intend on sharing the private thoughts, the raw realities or even the extent to which autism exists in my family. But I am so glad I did.

Autism Awareness Month: Y is for Youth

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The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy….I would imagine it’s the bittersweet joy of having children…watching the transformation from innocent Angels to inhabitors of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!”. I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in the aisle at the synagogue during prayer while onlookers smile and nod as if it is part of the service. But it’s not for much longer….as those other children blossom from midlings to Ivy League applicants….A2 will likely still ask for The Muppets or try to squeeze himself onto a tricycle or squeal “go faster daddy!” as he coasts down a hill on a tandem bike….the promise of youth in the body of an adult where looks from strangers will fade from smiles when asked “what’s your name”. It’s not natural to pray you outlive your child….but we both agree as long as there are songs to be sung, dances to be danced and bubbles to blown we will move with him and try to always see the wonder of his world.

Autism Awareness Month. X is for X-Ray.

Day 24

Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety….kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals…yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world…..if I could only take an x-ray of A2s little mind and see what he could for 10 seconds….. (…and feel free to smile at this picture….)

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

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

Day 21 Autism Awareness Month. U is for Ubiquinol

Day 21

U is for Ubiquinol

(originally posted 4/2015)

If you have heard this word before it is likely that you are either are a biologist or have a child with a mitochondrial disorder. In our case, to be sure….I am not a biologist. There is mounting evidence that autism and mitochondrial disorders at least co-exist in many cases. Mitochondria are organelles in almost every cell in the body and are considered the powerhouse of the cell. The mitochondria break down chemical compounds into energy and put it back into the cell for use. When there is a breakdown in the mitochondria factory, it cannot produce enough energy for the cell which can result in cell damage or death. This damage tends to affect larger organ systems such as the brain, heart, endocrine system, gastrointestinal system, kidneys and respiratory system. (As I mentioned….I am not a biologist..that’s about the best I can explain). The first time after 9th grade biology I heard about ATP or mitochondria was sitting in a neurologists office with A2 when she cocked her head and said “I need to send him to the Cleveland Clinic….I think he has mitochondrial disease…I am so sorry….”. I was confused–“Ok”, I said and left the office feeling optimistic that maybe we figured out why my baby completely stopped physically growing or gaining weight and developing. If we know what it is….we can treat it, why was she apologizing? But as it turns out, there is no cure and no real treatment for mitochondrial disorders. These disorders also tend to be progressive in nature so we must try to protect the mitochondria to the best of our ability using supplementation (thus the Ubiquinol CoQ-10) and body system balance. Under a microscope, A2’s mitochondria are oddly shaped..and there are a whole lot of them…and this hastened the question did some disease process or environmental assault cause this problem….or did he inherit it from me (mito are maternally inherited)? If something happened, what was it? Did I eat too many pesticides on my produce while nursing? Was his immune system down when he got a vaccination? Was the rated “F” water in Las Vegas where he was born full of toxins that damaged my baby? I am rational enough to know that there was nothing I could have done about my own mitochondria nor could I guess exactly what environmental assault would have caused such a huge problem…but it is here. And I now know why the neurologist apologized to me on that warm, blue skied summer day back in 2006…..

Autism Awareness Month. T is for Teachers and Therapists.

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. R is for Relationships

Day 18

“Are you sure he has Autism? He’s so friendly…”

While there are more nuanced aspects now to the criteria, failure to develop peer relationships appropriate to developmental level is one of the defining and most obvious diagnostic identification for children with autism.

Interest in people in general, desire for friendships and loving behavior can muddy the diagnostic waters and confuse people about what autism is and what autism isn’t.

Disconnectedness, aloofness and lack of desire to be touched does not always translate as a lack of desire for relationships. The desire is there, the understanding for how that happens is not. It can just be easier to be by yourself. A1 can tell you that.

Indiscriminate friendliness, hugs and kisses to those he loves and the compulsive desire to be around a lot of people doesn’t always coexist with developmentally appropriate social skills. A2 probably would tell you that part…if he could. He is just as likely to enthusiastically greet a stranger in a public bathroom as he would a child at school he knows well.

A2’s splintered play skills had to be taught like you would teach a typically developing child how to read. And he has missed many steps in this such as building with blocks and representational play. This spectrum of deficit in social interactions makes it much like I am raising 2 only children.

A2 wants nothing more than to play with A1, but has no idea how to engage in some of the more rigid independent activities he is playing.

A1 wants nothing more than to play by himself because he has no idea how to model the back and forth necessary for that interaction to work if it is not an activity of high interest.

I believe they love each other…but much of the time it is like they are drifting in separate rafts in a tumultuous sea of desire for one another’s companionship without oars the to paddle over to each other. Sometimes their boats coincidentally bump. It is those moments as a mom I see a glimmer of typical sibling antagonism, tattling and sometimes even a game of Connect 4 and hope that they both hold on to each other’s rafts and paddle to shore together one day.