Special Education

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

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Originally Published as The Tail Wagging the Dog 9/2015

Our dog is playful and fun and sweet and well behaved.

Until he is not.

And then, he is a bit of a sonofabitch.

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 my child, 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. 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.

Autism Awareness Month. G is for Genetics (and Guessing)

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(originally posted April 2016)

G is for Genetics

I get asked often what I think caused my child’s Autism.  I believe it is completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love my kids fiercely. Our struggles would be the same whether or not we knew the ‘why’ part.

Infection in mother during pregnancy, vaccine accidents,  overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all.  And they all have the same message:  “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT.”   These theories are also part of what drives the Neurodiversity movement.  That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different, so it is not something to be treated. Behavioral disruption is misunderstood communication and all the comorbid conditions such as GI/bowel issues, intellectual impairments, mental health issues are just that. Something not related directly to Autism (a whole other can of worms within our community….).

Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM.

To demonize parents who make decisions you would not necessarily make is also counterproductive. 

As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree, I just have to have empathy.

Here is what we do know.  There is a genetic component to Autism and it is likely paired with an environmental trigger.  Just like Type 2 Diabetes. You can’t develop this unless you have the genes.  You make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American.

We just are not 100% certain what that common genetic component or the environmental one in Autism.  I am not going to even pretend to know anything about genetics. The best I can do is tell you:

  1. Picture a city with 20,000 streets.
  2. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
  3. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
  4. (But what about the naval orange buying people!? Those are a lot like mandarins!)

That is what it is like trying to figure out the common genetic factor and environmental trigger together. When I had a discussion about this with a pediatrician 12 years ago she said to me: “Autism is caused by a genetics. Period.  To consider anything else is ridiculous.”

I sat for a moment and thought about that.  I then I wondered out loud, “Can you tell me another genetic epidemic in history that unfolded like Autism?” Crickets. I’m a pretty moderate parent…however it is no wonder that many parents are suspect of the medical system with that kind of definitive statement when the bottom line is WE DON’T KNOW.

Does it mean my husband and I have Autism? No, not necessarily…but who knows?  If we do carry that genetic material and we combined it….we no more caused the autism than we “caused” their big gorgeous brown eyes or fact that they may need to wear glasses one day. Their eyes could have almost just as easily been blue instead all things considered.   And if environment did play a role and all the Fruity Pebbles I ate during pregnancy kicked those  genes into overdrive as the environmental trigger, there is not a damn thing I can do about that now.

I have never felt the “shame of blame”…and I don’t think any parent should.

We are wired to procreate and continue population.  We can just hope that this kind of information will one day find the link that allows children who suffer in silence or physical or emotional pain to grow to be independent and happy…just like all parents want their kids to do.

Autism Awareness Month. 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 2 2016: B is for Behavior

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Autism Awareness Month A-Z original 2016
B is for Behavior

Running through Water

IMG_2885B is for Behavior

All behavior serves one of 4 functions.  To gain attention, to escape a situation, to gain access to something (usually tangible) or a response to an internal stimuli such as hunger, illness or exhaustion.  Seriously.  Just 4 reasons anyone does anything.  Think about it…you won’t come up with a 5th..I have tried.  Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more…

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Day 1. A is for Aides

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Autism Awareness Month A-Z 2015
A is for Aides

Running through Water

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, A1 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.

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Sometimes We Smile (or Sometimes We Cry:Part 2)

Jaycee Kemp1 Comment

I smiled 5 times today.

Three times in public and twice in private.

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I smiled within 30 seconds of arrival. My boy was flapping and waving with excitement to each bus. If given the opportunity, he would have run down the line to greet each one. Not the drivers, but the buses themselves as if they were fresh out of the stations of Sodor. Joyous in his innocence believing they each had their own personality. I saw him in a sea of adolescents, heads down, pushing past each other. Like the hustle and bustle of a subway train. Commuters with backpacks instead of briefcases. Shuffling, shuffling. Off to homework or tutors or practice for being the best at something since they were three. The commute to the next thing.  He sees me and gallops with an outstretched hand. I am greeted with a smile.  Always.

I smiled 5 times today. The instinct as a mother renders me helpless against noticing every single first-time. The same first times which beckon camcorders and cameras like the song of the siren and then whose passion slowly dissipates in the way the empty space between toothless grins are replaced by teeth yet too big for the spaces filled in. Our first times never end. Just more space between. My boy said his phone number out loud after years and years of practice. With no fanfare. He was just asked.

I smiled 5 times today. As I held up a wall, socially grinning and making deals with God. Chaperones milling about-clearing dishes, filling glasses- in a last attempt to seem as if they are helping while stealthy snaps from iPhones capture stealthy photos of their angels’ first dance. I am not a chaperone. They believe they are clipping gossamer wings for grounding by hiding in the shadows,  but their swans are molting on their own and would snap at outstretched fingers offering bread if given the opportunity. Mine laughs heartily and offers a thumbs-up when he sees a raised phone in his direction.

I smile and sometimes my child sees it happen and sometimes he does not. It doesn’t matter because he knows my humanness anyway, just like he would if his genetic dice were rolled differently. Today he did not see those drops of glistening joy and pride and I am no less embarrassed, no less ashamed, no less human for it either.  And neither is he. I have won the emotional lottery. And because of that, sometimes I smile.

My child is an enigma leaving us to figure out what HIS autism means, what HIS cognitive deficits mean, what HIS communication disorder means. And there are times none of that matters at all. He traverses along his own path, one others his age were expected to leave behind long ago by both parents and peers. One lined with The Wiggles and goodnight kisses and “marching parades”.  A path without expectation and never dissapating in private .  And because of that, sometimes, I smile.

My child’s joy is palpable and my heart levitates outside of my body watching him experience it. He can display the weight of his world, but then laugh at the same time if presented with the right silly face. I am never sure which emotion is primary for him but my own worldview tells me joy prevails because I could never do that. And because of that, sometimes I smile.

My boy wants to be part of the world. He navigates that weird and still uncharted middle school territory with explicit assistance. And when that help wanes, sometimes another child sees his light from across the room and without fanfare, crosses over, takes his hand and leads him to the dance floor to be part of the world. I am front row witness to the rare kindness and unconditional love we may have all forgotten before we went mad in this world.  All because my boy is just that worthy. And because of that, sometimes I smile.

My boy buoyantly flaps and hoots and repeats my name over and over and over in the space that should be the calm of my home. He also hops and beams and laughs when I walk away from my dishes, my reports, my vacuum when I cannot keep answering him from another room. He hops and throws his arms around my neck and kisses my forehead with a joy that is supposed to shed after our souls are deposited into these vessels given a name and a face. His love is like something from another place. And because of that, sometimes I smile.

These are the words of OUR life. He and I are both doing the parts we think we are supposed to do no matter how imperfectly executed. Because he is my best boy. Because I am only his mom.

And sometimes we smile.

Sometimes We Cry

Sometimes We Cry

Jaycee Kemp1 Comment

I cried twice today in public.

Once for me and once for him.

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I cried within 3 minutes of arrival, but with dry eyes and a smile on my matte face. My diaper bag disguised as a monogrammed symbol of excess rather than a symbol of unanswered questions about wipes and formula and a change of clothes for my adolescent. No one can see what is happening behind my eyes, especially if I cannot see the pity behind theirs.

I cried twice today because sometimes the race to suppress overactive tear ducts in a maelstrom of circumstance and emotion is an unfair competition of tortoise and hare. Sometimes I try too hard and one too many drops pools before one accidentally pushes its way past the checkpoint and spills down a cheek. It is quickly wiped away.

I cried twice today as I held up a wall, socially grinning and making silent deals with God to make no one talk to me. Us moms, we were all in the same place to help, but I was not on the list of volunteers, I figured it out and showed up anyway. Even the words I needed to hear would be a sucker punch to the throat and I would then choke on false pretense that transcends somewhere poetic. I don’t know where transcendence lies exactly–there are so many reasons those tears might seem to be faulty to everyone else. So I hold them in as long as I can and my tongue is held hostage, leaving me still alone.

I cry and sometimes my child sees it happen and sometimes he does not. It doesn’t matter because he knows my humanness anyway, just like he would if his genetic dice were rolled differently. Today he did not see those drops of glistening emotion and I am no less embarrassed, no less ashamed, no less human for it either.  And neither is he.

My child is an enigma leaving us to figure out what HIS autism means, what HIS cognitive deficits mean, what HIS communication disorder means. I am tasked to teach my child how to move through this world happily, safely. Though we live in similar space as everyone else, he traverses along some alternate dimension often invisible to all the other children so I don’t really know how to do that.  And because of that, sometimes, I cry.

My child’s joy is palpable and my heart levitates outside of my body watching him experience it. He can display the weight of his world, but then laugh at the same time if presented with the right silly face. I am never sure which emotion is primary for him but my own worldview tells me joy prevails because I could never do that. And because of that, sometimes I cry.

My boy wants to be part of the world but sometimes stands motionless with shifty eyes because he knows exactly the problem, which he perceives is him. While I perceive a world that does not know what to do with him. I am certain I am the only one who reinforces that. He worries. He should be worried, because I don’t always know what to do with him either. And sometimes another child sees his light from across the room and without fanfare, crosses over, takes his hand and leads him to the dance floor to be part of the world. And because of that, sometimes I cry.

My boy buoyantly hoots and flaps and has a cognitive itch that somehow seems to be reached by repeating my name over and over and over in the space that should be the calm of our home. Diligent years he sacrificed to learn that what few words he might have are meaningful and understood because we have a limited time to teach the world otherwise. I taught him those things by making sure he always had a response. And in those times caught in an endless loop, he gets one from me, but it might be birthed breech–cord wrapped around its neck-choking and feral and blue in my fallibility. And because of that, sometimes I cry.

I worry one day my boy will read my words and will be hurt or angry or curious or furious and he will demand an explanation and he will walk out of my life because to him these were not words of awareness or advocacy or change. They were the words of HIS life. But that bittersweet day will be the day I will breathe easy with a newly missing piece who can navigate this world alone if he has to. I worry too my boy will be a man…still without the ability for any of that. And in my end, all the sacrificial words spoken on his behalf and judged were not enough to change the world around him leaving him alone.  And because of that, sometimes I cry.

These are the words of OUR life. He and I are both doing the parts we think we are supposed to do no matter how imperfectly executed. Because he is my best boy. Because I am only his mom.

And sometimes We cry.

Sometimes We Smile (or Sometimes We Cry:Part 2)

Who Will Light The Moon For Him?

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I sat on the edge of my boy’s bed and ran the back of my hand across his smooth, cherubic cheek. At the same age, my older son’s voice was already changing.

Most nights I wait until I know his door has been closed, the light is off and I hear the dog downstairs rooting around his aluminum dish for nighttime grub. I wait until the heft of daylight is tucked neatly beneath his bed and he has held silence for a few moments as it has held him for the last 12 hours.

The shadows and light cast on the walls of his room in the friendliest of ways–not because of the shadowy reflection of Mickey Mouse ears and baseball trophies, but in the way that my sweet boy has never been afraid of the dark.

“Mooo peeeese” he says more as a statement than as a request. I much oblige and ask if he would rather have space than the moon. He always prefers the moon.

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I fumble with a cheap plastic rocket ship on his nightstand. I’m always surprised by just how dark it is and how difficult it is to find.  It has a clock that forever blinks 12:00. His internal clock is spot on, so I have never bothered to fish out the manual from the library of lost causes, loose change and plastic ware to reset it. Every night, I push a button to reveal a constellation of stars, or an astronaut or a full moon large enough to beckon high tide thousands of miles away and swallow his room in white foam and ocean spray. While sometimes it is “spaceman” who will watch over him after I leave the room, it is mostly the moon he wants before he says “ready” in his polite request for me to let him drift off on his own. If only he could learn to push the moon button by himself at 2:00am to lull himself back to sleep instead of requiring my semi-conscious presence to be his field of poppies.

I finally find the correct button, and even though one of the spotlights has gone dark over the years, the most perfect Supermoon hangs low and flickering in the rotation of his ceiling fan.  Maybe it makes it look like the man in the moon is bidding him a fair adieu with the consistency and persistence he likes to wave goodbye to people who don’t appreciate the value of farewell as much as his imaginary spaceman. Or maybe he likes the idea that someone would wave back.

“Bye Mommy”, he pours out in his child’s voice I believe sounds exactly like it did when he was four. Except he could not say “bye” or “mommy” or any combination of that at four.

That rocketship, with the projection of a perfect Moon has been around about that long. Really, probably as long as he can remember. It is only a matter of time before the remaining dim spotlight shines for the last time on his ceiling. I have a hard time imagining what it will be like to have to explain he already had the final night with his own personal moonbeam when I realize it the next evening. He will keep asking for the moon and I won’t have it to give anymore.

So I fumble in that friendly darkness every night searching for the moon button and praying that God takes the dog tomorrow instead.

But tonight, I went online and ordered the last 8 rocketship moon projectors I could find. Hopefully 50 more years and 18,000 Blue Moons. I don’t know how many of those moons he will have to light up himself, but until then, at least I know he is not afraid of the dark.

#bluemoon #supermoon #autism #motherhood

 

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A2 fearlessly finds his way

 

 

Why we do the things we do. The trauma edition.

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(originally published 3/2016)

There is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it, it doesn’t:

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog, except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I rationally know there is likely nothing in that envelope that should really cause this kind of response. But that’s the thing with phobias or irrational fears and trauma response.

Yes…I said trauma response. 

Often times prior experience attaches itself to something innocuous and we then pair our previous response with a neutral stimuli and generalize it over time. Caller ID with the school prefix, email and now apparently manila envelopes have become the manifestation of years of battles, blockades and having my already fledgling parental competency called to the carpet.

For me….my defining moment were words uttered in a meeting 7 years in….but 3 years ago:  “Its not fair for one (A2) to get more just because of your parental advocacy”  (which was agreeable…but in a whole different way given we were discussing data collection that was reportedly correct, not collected by me…and concerning). 

It is silly I suppose if you are the one who stuffed the envelope and have no knowledge of my defining moment or my other, more academically impaired child. She certainly must be wondering about the warning likely issued by the elementary school about my hypervigilance, because the experience she is having is the opposite. A parent who is late to answer emails yet bizarrely will parse apart data collection in an IEP meeting….and be spot on why it was taken incorrectly must mess with her own schema of special needs parents.   I have learned to become a very hands-off parent in hopes of preserving my own life in the last year.  I have a double-decker weekly pill case that houses my capsules of life extending medications that would impress most of the AARP crowd.  Yet I am not yet even 50.  Years of sleep deprivation and external stress can only wear so long in a genetic cesspool.

So there it sits….but not without words. It screams to me every day over the din of my responsibilities. But I am strong and I can withstand long term, unfocused wailing.

So I leave you with 3 truths….

A. I am human.

B.  I love my child more than anything I could have ever imagined.

C.  I am preparing for an uncertain future in a time that I will no longer be here to advocate in a world that does not see my child as perfect as I do.

…and there are things that get in the way of of the co-existence of Notions A, B and C.  

Sorry about the envelope.

Why I’m OK with Kids BOO-ing Mine This Halloween

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In U.S. suburbia at Halloween, if you are lucky enough, you get “BOO-ed”.

It is much nicer than it sounds.

Getting BOO-ed means opening your front door to find treats placed anonymously on your doorstep. You…I mean, your child… are to return the favor by BOO-ing another neighbor and so on and so forth. When we moved to our neighborhood 12 years ago, A1 and A2 were a toddler and infant respectively. Our development was full of mature trees, which also meant a neighborhood full of empty nesters. By the time the neighborhood turned over, my kids were much older than the new generation running the streets with strollers and trikes. A2 will watch what he calls “the babies” out our front window. The mothers are young and pretty even in their haze of exhaustion playing in the cul-de-sac and chasing down their little runners. I can relate to their frenzied outdoor fun since even with a 12 year-old, I too cannot just let my child out into the streets without supervision. Autism is an uncomfortable reality for the middle schoolers who in the neighborhood who don’t want me around.

But really, those little kids are functioning in their play where A2 is cognitively and they are at the age of humanness where they are accepting of his differences. For them, the differences are not about intellectual impairment, but rather size impairments as they watch A2 attempt to squeeze himself unsuccessfully into their Cozy Coups. Their questions are genuine and kind and they think nothing of him joining in the digging of dirt.

But most days, he will not join them in play. He knows those are the babies. He knows he is not. This often means I am benched from the cul-de-sac-exhausted-mommy-brigade that stokes glimmers of socialization and connection I had with other mothers when I was also young, pretty and still had energy.

Today, as he is every year since our street started filling up with little ones, A2 was BOO-ed. Twice.

Care packages are silently left at our door and I wonder which of our neighbors were sure to include him. Most know he doesn’t eat many solid foods, knows he might not notice something on our doorstep or spend much time with a special gift. I think despite my smiling isolation, I have neighbors who understand that being BOO-ed is about inclusion and is as much for me as it is for A2. And there is never anything spooky about that.

#autism #autismawareness #kindness #goodneighbors #halloween