Special Needs

Random Acts of Dignity: The Ultimate Advocacy for My Disabled Child

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Dear Donna, Cashier at Wendy’s,

My 10 year old and I stopped in for lunch today on your shift. I could see after you asked him how he was doing today that his jumbled answer might have caught you off guard. You shifted your eyes to me and then back to him as he continued…something that happens all the time in our world. So I looked down at him and as his 24/7 speech and language coach I said “You can say, ‘I’m good!'”.

But then you caught me off guard. Instead of looking to me for his order, you asked him.

He answered you.

You leaned in and said “I think you said you want a cup of water. Is that right?”

He nodded.

“Aren’t you getting anything to eat?! What else?”

After he excitedly spit out a string of jargon you asked him to slow down and try again. So he did.

“Fuhweyes” he said.

“What size?” you asked.

“Mee-yum.”

“Great….anything else?” she asked, glancing quickly in my direction.

I shook my head as my son clearly said, “Nope!”

What you didn’t know as we held up the line is that my son has Childhood Apraxia of Speech, but the name of his disorder didn’t matter to you. What mattered to you was making sure you got his order right.

You didn’t “let” him be an equal patron at your restaurant…he just was.

You let him be his own expert.

You presumed competence. Not your version of competence, his.

You allowed him the dignity of time.

You asked him his name to put on the screen for his order just like everyone else and checked out to see if you said it right. You even asked him if he knew how to spell it for you. So he did.

Through this act I am certain you are not expecting a newspaper article or local talk show segment. You weren’t trying to be noticed or given kudos or wanting to be called a hero because you took a moment and tried a little harder. You wanted a 10 year old at your counter to order lunch just like any other 10-year-old might on a Friday afternoon.

Advocacy and inclusion are tricky things. When they come from a place of equality, empathy and understanding they are wonderful things. When it lacks authenticity, it can still have a place but can also be humiliating and damaging to an already fledgling movement. By “letting” my child be prom king, shoot the last basket in the last 10 minutes in the last game of the season, by being so kind as to “be his friend” , well meaning people are inadvertently continuing to marginalize him. No one has assumed that he was worthy of the crown on his own, able to make that basket without help or that maybe he makes one heck of an awesome friend and that perhaps HE is the kind one.

So you, Donna your authentic advocacy is the kind that will change the way we as a society deal with disability. Thank you for lunch with a side of hope.

Sincerely,
A2’s Mom

Sliding Doors. Looking Forward. Looking Back.

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A few weeks ago I was stuck in traffic.  Albeit Midwest traffic, but a standstill is a standstill.   A1 was incensed in the same way any curmudgeonly old man dealing with road lock might with a loud “C’Mon!!!” and a quivering fist in the air.  Except  he is a 6th grader who was going to be late for religious school.  And he has never  personally navigated traffic of any kind.  I calmly explained to him that sometimes life is quirky.  Had we left 15 minutes earlier we might be part of the accident slowing everything down.  Or maybe by showing up 15 minutes late he might miss the most boring part of class.  For all we know inconvenience is a blessing in disguise.

For all we know.

Netflix is showing the movie Sliding Doors this month (and serendipitously also showing Serendipity, a way more palatable existential rom-com). Gwenneth Paltrow’s life splits off into parallel simultaneous existences based on minor differences in circumstance that alter the outcome of her immediate future.

Ultimately  three things are revealed:

#1  The event that changed everything was out of her control, seemingly extraneous and unnoticed by her

#2. Everything that happens happens in parallels whether she is part of it or not 

#3.  The outcome somehow is going to be the same regardless of the path.

I showed this movie to A1 to drive a concrete point home in the spirit of control and lack there of.  I have this funny thing with the idea of omnipotence and omniscience at the same time–a notion that seems cruel to those of us whose minds cannot conform in that manner no matter how much salvation sounds like a cozy deity-down comforter everyone else can snuggle in.  It means people like A1 and me are damned from the start because we just CAN’T …and it was planned it that way.  Like being forced as a child to hug and kiss a relative even when that relative knows it makes you uncomfortable to do so.  All in the name of making that relative feel warm and special.  Except what kind of weirdo feels all the good feels by making a child squish their body against theirs against their will?   That is why I show Netflix movies to my kid instead of reading parables.  I’d rather he believe that people just think he has bad taste in movies than that his life and choices are meaningless and filled with anxiety because his synapses don’t fire in a way that will ultimately please an all knowing being who made him that way.  We cannot help thinking about how our moments might be affecting an unknown future.

A2 operates differently.  These things do not need to be explained to him because he is only in the present.  I am happy because Daddy is here NOW.  I am not happy because I want Daddy here NOW.   NOW I am happy and screw Daddy because we are on our way to Chuck E. Cheeses.  If all is no worse than status quo, then optimism and hope are not necessary if you are only worried about right now.  It really isn’t until someone introduces you to unrealized expectations or well conditioned responses that you develop a sense of disappointment, dashed hopes and anxiety of an unknown future.

In recent years A2 has also taken to obsessively asking “what is the time?” and watching any clock either as if it is a piece of art to be analyzed and admired or else as if at any time it might fly off the wall and attack him like the starlings from The Birds.  His authenticity and ability for stopping and acknowledging the moment in the the moment, realizing there will be a new moment soon is a gift.

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As we stand on these tracks together I think about how Autism has robbed A2 of a regular childhood but probably not because he views it that way but because I do. There is a lot of track already behind him but there is much more ahead and I strain to see the horizon in case a train comes barreling down the tracks…because at some point there will be a train. And there is nothing I can do to stop that.  However, A2 only looks at the rails beneath his feet being careful not to trip and he only looks back to look at me.  If he were to hear the distant whistle, I am sure he would simply step off the track in that moment so he could watch the train go by.  Because my focus is on the horizons while stumbling down the rails, I run the risk of getting my foot stuck between the slats and then panicking thinking about the possibility of the oncoming engine. I am hoping that in 2016  I can continue learning from A2 as I struggle with the concept of mindfulness, especially when the moment seems bleak.  I hope for the ability to recognize each moment as unique and not as good or bad and that I can cherish the people and things that are important to me regardless of how time seems to be treating us in the moment.

I just need to remember to point to my wrist and ask “what is the time?” and know that it will be different soon.

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

Jaycee Kemp3 Comments
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The Grim Reaper takes a break to ensure his safety while the ill-prepared firefighter keeps his distance just in case

Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal was for all our children to be included, be safe and have fun. I was perplexed when one parent refused to change the cookie decorating idea she had. “Kids who can’t make or eat them can at least enjoy them for how cute they are”. In what I believed was a teachable moment I reminded her that it still excluded them and also created a potentially dangerous situation. This parent became so incensed that she quit the committee. While I still get as excited about Halloween as the next guy, I was horrified as one of those children was mine….and another parent was willing to not only exclude him, but risk his safety because she was so excited about her adorable witch hat cookie project.
Halloween has become the holiday where those children with differences become the most exposed and have the potential to be the most left out. The numbers of children with food allergies and other differences have risen sharply since I was a child. As a parent with kids with food issues and also autism, it took me many years to figure out ways how to adapt the most super-fun holiday so it was still fun. Turns out, there are lots of ways to do this both as parents and as community members.

Here are some of the top ideas for the “BIG 3” to make Halloween still the coolest holiday ever
1. FOOD ALLERGIES:

a. PARENTS: Sort out the candy together so you can help teach him what is ok to eat. Have the “SWITCH WITCH” visit later that night and exchange that bag of candy full of offending allergens with a present. Your child will be thrilled to have the best of both worlds. And hey, there is no rule that says the switch witch can’t give you that bag to stash away and secretly eat after the kids are asleep.
b. SUPPORTERS: The Teal Pumpkin project is a new idea sweeping through social media. If you paint a pumpkin teal and have it on your front porch it will alert parents of kids with food allergies that you have an allergen alternative available. Also, for class parties, ASK about allergens—be sure to ask about brand specifics and preparation—that can all play a role in safety. Please remember what it would be like to be 8 years old where everyone gets to eat really cool looking cupcakes except for you. If that were easy to do, none of us would ever be on a diet. The willpower of a child with a food allergy is like nothing most of us can ever understand.

2. SENSORY DIFFERENCES:

a. PARENTS: Respect your child’s sensory difference. If noise is an issue, avoid those homes that go all out for Halloween….your child might be in for a “jump scare” that will end his evening of fun. Costumes are not always made out of the finest of materials.have him choose his own and try a number of options until one feels right. Contact your local support groups for special needs—there may be sensitive Trunk or Treat nights available which may suit your child much better.
b. SUPPORTERS: Teachers and room parents—if you have children with special needs in your class, tone down the scary a bit. Spooky music should not be on full blast and the mulling around of 25 kids in costume might be disorienting. Have a quiet space outside of the classroom where the child knows he can go to escape if overwhelmed. And for pete’s sake NO BALLOON POPPING ACTIVITIES OR STROBE LIGHTS!

3. AUTISM:

a. PARENTS: Create visuals to help your child understand what to expect at school parties or trick or treat. Try on the costume ahead of time. If your child does not want to participate in Halloween festivities, don’t force them. Throw a small party at your house with old school fun and invite 2 or 3 children he knows for trick or treating, stick to familiar neighbors homes buddy up with a child who can model. Sometimes “just a hat” IS a costume with enough thinking on the fly.

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Freddy Krueger as a child…before all the drama. He just wanted to feed everyone cereal and soup.

b. SUPPORTERS: If a child does not say “trick or treat” or “ thank-you” he may not be being rude. He may not be able to speak or fully understand what is expected of him. Same goes for a child who appears too large or too old for trick or treating. If a child grabs a handful of candy or doesn’t seem to know what to do when you hold the bowl out, give them a prompt of what to do or physically help them. Their fine motor skills may be impaired and the ability to just pick one or two candies from a dish might be difficult. Still compliment an aspect of their costume even if it seems incomplete. This is still their Halloween too!

 Those of us who try to make our kids feel included no matter what can get very good at scooping up the world around, tying it in a different bow and re-presenting it to our kids and Halloween is no different.  With the help of our community, little tweaks can make all the difference between Halloween being fun or being truly scary.

The Days Its About Me: The Dirty Secret of Taking a Break

Jaycee Kemp1 Comment

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Every few years, I go on a life sabbatical. Life sabbaticals work differently than educational sabbaticals mostly because they are not real. The notion that there are people who receive paid time to disappear somewhere to have a temporary life that doubles as a say-no-more way to avoid other social responsibility is magical. “No, no, I won’t be here to chair that research project, I will be away on sabbatical.”  versus  “Well…you’ll just have to have that IEP meeting for my kid without me, I’ll be on life sabbatical. Have your people call my people” doesn’t quite have the same heady ring to it and might necessitate a call to a mental health professional.

Unlike our neurotypical cohorts, many of us special needs parents are preparing for a forever life. Though we feverishly plan for it, there might not be a high school graduation send off party unless of course that party is sending off what few resource and assistance waivers our children got before they age out of the system. Diapers and tantrums are likely going to get larger. With the passage of time I am already finding myself getting smaller, more tired and more complacent in the frenetic searching, learning and advocating as certain realities set in. This is troubling.

Apathy is the ugly stepsister of passion. While passion will gladly cut off a chunk of heel to make her foot fit into that glass slipper in hopes of a prince, apathy will do so because its easier to make do than to shop for something to wear to the ball.

Endless details and inconveniences are just part of daily life in parenting regardless of circumstance. Its like the service charge for the privilege of parenthood and an occasional break from that is necessary for even the strongest of mommy constitutions. However, there are those of us who are so steeped in the present at all times where there are rarely idle moments not spent trouble shooting, even in the middle of night as we play musical beds and double-check doors. So I am mindful in the moment and I am mindful in that moment contemplated 30 years from now. The whispers of all the things that will come in between need to shut the hell up because I simply have no room at the inn left to consider those things.

As caregivers we are told to take care of ourselves, take time off, do what we love. This seems like cheap advice and when heeded I am reminded that ultimately not much is different on my return. The airline may have lost my tagged luggage of anxiety  while I was away, but it is surely taking a circular ride on the carousel at gate 6 when I arrive home. Time away takes me to places from my past. A time when existential angst was poetic, selfishness was better defined as a deep level of internal awareness and laziness was a sleep credit I could one day consider cashing in. The dichotomy for the surrendered love for your child and also wondering what it would be like if your heart didn’t bleed through your blouse every day is a quiet and unreasonable Sophie’s Choice. Sometimes its just easier not to be a tourist in your alternate universe.

In my life sabbatical, I am lucky to be able to spend a few days away from my forever life with soul companions from my past who live in sleepy mountain towns in New England. Their lives are so vastly removed and different from mine, yet anchor me to a world where I once lived. Lingering, casual vegan meals out where my fork is already unwrapped and folded into a crimson origami pocket on the table. Conversations are still tangential but are about politics, performance art and anecdotes of escapades in places like Nice and Machu Picchu. I meet new people—interesting people who talk about ideas and experience rather than people or events. Though these conversations have evolved over the years and now include points about how difficult camping at high altitudes can be with stiff morning joints and schlepping a c-pap machine, I am transported into a life of things that were once very important to me. Supportive friendships not sullied in the day-to-day. I can have amnesia and even forget that words such as “occupational therapist’ and ‘trash day’ and ‘bus bully’ ever slowly seeped into my repertoire of significant and meaningful topics of interest.

While recently on one of these life sabbaticals, serendipity appeared in a cameo.  In an unexpected and out of my control change in travel plans, I had the opportunity to attend a reading of a famous contemporary writer with cult-like status. His prolific works speak to anyone who has ever had a family or even just been alive despite the level of quirk and shock and neurosis woven through his stories. There is a distended familiarity in his writing and when he lends his voice to the story telling it feels like you were reading the original works in the wrong dialect of a foreign language you learned in high school. That epiphany of disappointment of what was missed in the original reading is quickly tempered by excitement to re-read in the voice and inflection intended.  Book signings are often part of these events and this writer is certain to ask each fan a question and attempt to tailor a sentiment attached to how he feels about them in the moment. And he can be honest. And brutal. And weird. And sometimes all. But regardless of what is written, it is enough to brandish your signed copy around to show everyone how he thinks you smell like coins. He is a story-teller and I believe he likes to stoke fires and create the story to be told even when he isn’t directly the voice.

While he briefly engaged my theater dates for the evening, I already had a question posited regarding his physical writing process. I thought if I asked him something preemptively I could kill our allotted time without ruining my self-esteem. “You wrote for such a long time pre-PC. Was it difficult to make the transition from handwriting your ideas to typing them out? ”  He answered and asked why I was asking. I guess I should have realized that was possible as a visitor in my sabbatical of the impossible.

“I used to write a long time ago. And then I didn’t. And now I am trying again but now there are computers and expectations. And its hard.”  I started reaching for my book he had not yet finished signing, but he continued.

“What do you write?” Oh crap. I looked at my anchor friend who was smiling at me and nodding and guessing he must not have seen the poor young woman ahead of us get eviscerated over her cheap perfume. “Its just a blog”. He reached back to put something on the floor behind him and continued.  “What do you write about?” He still wasn’t done signing my book otherwise I would have grabbed and ran…..the door was still ajar.

“My kids. There are…disabilities.”

“What kind of disabilities?” he asks without pause (door squeaks open a bit more).

I run down a quick and dirty list. He then paused and thoughtfully balanced the Sharpie between his thumb and index finger while resting his chin in the palm of his hand.  “Autism, yeah. My (distant relative) has (another relative) with autism. I fucking hate him. I HATE that kid so much.”

And there it was. Door now wide open. Mouths of theater dates wide open.

Hole in my heart wide open.

I ruffled.  “What is it you hate about him so much?”
“He doesn’t play with toys. They buy him toys but he doesn’t play them. He makes a mess of everything, destroys everything. Their whole world revolves around him and its ruined their life. I fucking hate him.”

In that moment I tried to decide if he was:
A).  a creative genius and there is nothing like making people uncomfortable or angry to get to hear some real truths.
B).  a complete asshole amusing himself and disguised as a creative genius and gets people to talk about him no matter what
C). Has absolutely no filter and has potentially is on the spectrum himself. Which would make sense if you have ever read any of his stories. This one is familiar to me. And also likely the thing he purportedly hates about said distant relative.

Regardless, I had to respond.

“Well, I don’t hate my child, but  there are times I hate autism. Sometimes it feels like it is ruining my life. I want to be done still getting poop under my nails but my 10-year-old is in diapers…. I guess I see it this way. No matter how hard so many days can be there is one thing that I am sure. It must be way, way harder for him, harder than it can ever be for me . And that makes me sad for sometimes feeling the way I do.”

We stared at each other for a time that was a few seconds longer than comfortable.

“ I don’t think I would have thought of that perspective” he said. And he then finished signing my book. As he handed it to me and I turned to leave he said “Wait. Whats the name of your blog?”

After I got over the “I’m really angry and I don’t care if this is a schtick for ideas or even if he has autism himself”  the “THIS FAMOUS WRITER MIGHT READ MY BLOG!” HE’S GOING TO HATE IT!” (#humblebrag)  I spat out Running Through Water.

“I like that. It really captures what that’s like doesn’t it?” he said as I wondered if I just made him more uncomfortable than he made me.  “Yes” I told him “both on the good days and the bad ones. Sometimes you are exhausted and get nowhere …..and sometimes it makes you weightless.”

I peeked at my book where he had put two fish stickers over the writing errors he had made to both cover up his mistake and also call great attention to the fact he made them in the first place.

“You make me want to live again” he wrote.

Frankly I don’t even know what it means, but my story is right here Mr. Writer and you got me to tell it.  My writing is far less than anything I would ever want it to be, but it lay dormant for 25 years. My muse comes in the form of a cherub faced innocent who makes my soul light brighter than I could ever imagine.  He doesn’t ever get a life sabbatical.  Life sabbatical is a sham.  I love my children  but I hate my fears for them. Time away makes me miss my old life but it also makes me know if not for my experiences now I would not know that there was something to miss.  And I suppose its ok to allow those ideas to coexist as past and present collide and am reminded of poetry from my old life that I just didn’t believe:

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.  When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” (Khalil Gibran)
Every day is an opportunity to live again with new perspectives our old selves could not have imagined.

To the Regular Ed Teachers: Top 5 Ways to Keep Special Needs Parents Off Your Back

Jaycee Kemp8 Comments

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My home phone rang the other day right before my kids got home from school. For those of you who do not know what I mean by “home phone”, its that thing that plugs into a wall and has the # symbol that cannot hashtag anything. When the home phone rings, I typically keep doing whatever I am doing unless I am feeling a bit of whimsy to torment the telemarketer likely on the other end. The only other time it rings is when someone at the school does not know to call my cell…which often then strikes fear in my heart. So I picked up.

“Mrs. ATeam?” Gulp.  It was A1’s new science teacher calling to say “First of all….let me tell you I think he is hilarious. He made this cartoon strip ….” He then went on to disclose all the other things drenched in awesomeness while I was waiting for the “Second of all….” part. That part never came. He called me to tell me I had a cool kid. And that was it.

I am already too experienced with the school system to be naive. That same morning I had to send an email to kindly remind another teacher to carefully review A1’s IEP and Health Plan as there were some important things not being followed. Coincidence to hear from the science teacher the same day? Probably not. I am guessing he may have just been reminded that he had a kid in his 4th period class who has an IEP and a Health Plan. Maybe not…but as I said, doe eyed ingenue does not work as well with crows feet.

Unfortunately, what struck me most about this amazing phone call is that in the 3 years that my younger A2 has been in public school…my very speech impaired child…I have never ONCE received a phone call from a regular ed teacher just to tell me about his day in their class. And let me be clear about 2 things. Real clear since this won’t apply to everyone.

1.   A2 tries to tell me about his day. Every day. And we CANNOT understand him.

2.   I have ASKED  for communication. Over and over. Every year. In front of other people. To almost no avail.

So teachers…this advice is completely free of charge. The key to keeping us special ed parents at bay.
1. CONTACT US FIRST: Before school even starts, call to introduce yourself and ask about our kid. Give us your contact information. Assure us you are the extra eyes and ears for a kid who has no voice.
2. DON’T ASSUME THE INTERVENTION SPECIALIST IS JUST TELLING US EVERYTHING. My kid has a whole 30-60 minutes a day of direct IS time required in his IEP in our high-end-award-winning-district. My severely learning disabled child. The paraprofessionals who are with him most of the day are not permitted to communicate with me directly due to their classified employee status. We often get second hand info from our IS that sounds something like “had a great time in music class learning new songs”. The small tidbits we do get…well…that’s all…that’s ALL we get to know. The nuances are never there for us…if they are making a new friend, if someone hurt their feelings if they thoughts something was cool or interesting. And those things are definitely happening in my child’s world and no matter how hard he may try to share those things with me, if I have no context, I will not know at all what he is telling me let alone what questions to ask. The paras also are not allowed to attend IEP meetings even at my request. Were you aware of any of that? A2’s Intervention Specialist has 10 kids who can’t tell their parents anything about their day. She is ALL of their voices….and she is trying very hard to be all knowing by being the 3rd party communicator. But why? This is a team approach. While you do have 25 kids in your room, if they are lucky and have parents who actually ask them about their day, their kids can tell them. You have so much you can tell us and I guarantee all of us want to know.
3. INVITE US IN: To volunteer, to be a fly on the wall, to talk about our kids to your class. Did you know that neither you nor any of his other caregivers during the day are allowed to divulge any information regarding our child’s diagnoses to the other children due to HIPAA**?  And there are SO many questions from children aren’t there? If you have an inclusive classroom, the information a parent can provide the children can be invaluable to the inclusive environment. Offer to include the IS to help that parent if they express interest but are uncomfortable. **IMPORTANT DISTINCTION:  FERPA (Family Educational Rights and Privacy Act) any information that is directory information is ok to give out.  So If a parent is asking for another child’s last name or to get in touch with another family, that is not confidential information if the family did not opt out of directory information.  You just can’t tell us the child is on an IEP or anything regarding diagnosis.
4. RECOGNIZE WE UNDERSTAND YOU ARE BUSY: We are not out to get you or have a “gotcha” moment. I cannot imagine being a teacher right now. Huge classloads, jobs dependent upon test scores that are dependent on more than just your ability, differentiated instruction, outliers flying under the radar, helicopter parents, uninvolved parents. A 10 minute phone call once a month to tell us something we wouldn’t know without your call. If you do that once a month without fail you will likely never hear from us. But your principal will almost definitely hear from us. To hear how awesome you are.
5. INCLUSION AND INTEGRATION ARE DIFFERENT: This doesn’t mean let them also have a desk and have peers help them hang up their backpacks (though we recognize the value in that too). I mean if you take a picture of our kids to put on a bulletin board make sure it is a good one like everyone else. If you are in reading to the class and you ask a question the other kids can answer, figure out a way to ask a question that could include our kids’ ability to answer. While you have kids who can fall through the cracks, ours have absolutely no way to mountain climb out of those crevices without you. I am sure like us you don’t want them just to be a warm body at another desk. Ask their IS for strategies…that is why they are there.

BONUS #6 also at no charge: THE MOST DIFFICULT PARENTS ARE LIKELY YOUR BIGGEST ALLIES: Yep. We are the wave makers, the getter-doners. We figure out what you want and need and we try to get it for you especially if it will benefit our kids. Sometimes you don’t even need to tell us what that is. We figure it out. Assume nothing regarding our motivations.

For those of you who went into regular education vs. special education–those days are long gone. Inclusion is not just the responsibility of your Intervention Specialists. Much like us parents of kids with special needs…we started out in the exact same place as all the other parents in your room. Maybe even as you did too as a parent. Our journey veered off years ago but the desire to get to know the same thing we would have if everything turned out as expected has not.

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

Jaycee Kemp1 Comment

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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.

Autism Awareness Month: Y is for Youth

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day 25

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.

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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

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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.