Autism and A Gun By Any Other Name

img_4970My brother and I were sitting on the couch chatting about politics last winter when I showed him a segment from the Daily Show.  It was a humor bit about calling a Wyoming elementary school to find out if they had a gun in the event of grizzlies. There was a laugh track and a brief photo of a gun, so it was odd to me when A2 gasped loudly, stood up from the couch waving his hands and both tearfully and fearfully begging, “No gun!  No! Shoot, no!”

We are not hunters nor are we gun enthusiasts and neither are my friends. As far as I know, A2 has never seen a gun in person or on TV, given 100% of his viewing includes Barney, The Wiggles and NBA.  He has never heard a gun shot. Neither he nor his brother ever pretended things were guns.  He has been known to blow some zombie pirates away gleefully at Chuck E. Cheese, but those are not even guns.

I reached for him to comfort.  He pulled away and continued to plead “no!”

A2’s language disorder renders him without the ability to elaborate and his anxiety rendered him without the ability to say much of anything as he stifled tears. I was perplexed.

The next time I saw his Intervention Specialist, I asked her how they handle lock down at school since I grew up when there were only tornado or fire drills. I literally have no concept of what they do.  She informed me they tell the kids it is in case there is someone in the school who should not be.  No mentions of guns or lack of personal safety, she assured me.

Fast forward one month.

While visiting my mother out of town, A2 was playing in the bathtub when suddenly he became very quiet.  After staring off for a few moments, he pointed and gasped ” No. Shoot. No. Boom!” I tried to follow his gaze, when I saw this….

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What in the world is “No shoot boom?!”

Apparently, the item of concern was the bottom of an electric toothbrush and he would not get out of the tub until I removed it from the bathroom.

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Upon further inspection

My child who has no experience with violence or guns knows what a gun barrel pointing in his direction looks like. He knows he should be afraid. And he clearly was now on two very different occasions. 

 I HAVE NO IDEA WHY.

He is never, ever alone with an adult we don’t know well, generally not even family. His aides are almost always supervised.

There is only one place it is possible. This meant we would have to question the people at the place he spends the most time and we are to have the most trust.  The ONLY place where he has potential to be alone with adults without us.

How in the world does one even go about doing that without placing the teachers, therapists and paraprofessionals in a position of not only defensiveness, but of questioning your motives or your sanity as a parent. A2 went 11 years with no mention of guns let alone a knowledge and fear of them. We had no other option than to ask because we don’t have the option of taking anything for granted in our world.

What is the worst case scenario you can imagine for your own child? 

Those of us with anxious personalities can come up with a bevy of outrageous ideas when it comes to our child’s safety.  However, let me assure you, when you have a child who cannot tell you anything while paired with the knowledge they will likely outlive you, you don’t have to have to be Type A, neurotic,  high-maintenance, helicopter or any other of the words that may be assigned to you behind a closed lounge door by people who don’t truly understand the fears of every single parent of a child with a disability.  We send our kids out into the world as a leap of faith in their teachers, therapists and caregivers.  And we also have no choice but to accept whatever the answers are when they have nothing solid to give us in moments like this.

I have worried about many things throughout A2’s life, but gun violence/gun safety has been super low on the list of worries that keep me up at night. (Let that one sink in for a minute….).  Almost more so than my frenzied concern over where A2 might have gained this new-found awareness was my sadness in knowing something stole a level of innocence from his blissful naivite about how the world works.  We don’t have difficult discussions in the way my friends do with their children when they show up wide-eyed and fearful about confusing and upsetting events of the world around us. So many things that we as adults keep our fingers crossed behind our backs as we reassure them they are safe, hoping with all our souls we are right.  I have assumed because A2 has not seen hurricane devastation up close and personal, cannot conceptualize a mushroom cloud and has never seen an automatic weapon mow down 500 people while enjoying themselves at a concert that he does not contemplate or worry about his own safety in these ways.  That the things that fill his iPad with cartoon characters and songs about fruit salad are all he should worry about. Man alive…I am pretty sure I was wrong.  Maybe the belief this is true is to protect my psyche, not his.

I have to take my best guesses as far as what my child does and doesn’t understand about the world. I also have to take my best guesses as to how he is affected by those things. It’s not wrong for me to shelter my tween from guns. For us, there is no meaningful teaching of gun safety or exposure that doesn’t end in a loop of doing it wrong somehow. The stern warning of “STOP! DON’T TOUCH! LEAVE THE AREA! GET AN ADULT!” is a useless four-step command since my child can only follow a two-step with any regularity.  He certainly doesn’t have the fine motor skills to learn the power and healthy respect a gun commands under adult supervision at the shooting range.

So according to the professionals, my non-dangerously-mentally-ill kid (who does not have an aggressive or hateful bone in his body) who can technically have a gun just like everyone else when he is 18, can’t be taught how to handle it carefully, how to shoot it or when to use it, yet I am to expose him to firearms in a way that won’t frighten him and also so he knows they are not toys and won’t pick them up. I would very much like the manual on how to do that.

There are 300 million guns in the US.  It sounds like my child has seen one of them in a way that caused him a great deal of upset and anxiety and how that happened will likely always remain a mystery.  We have dulled our senses and turned down the volume on what we are willing to accept as normal here. And this uncomfortable truth will eventually spill over onto my beautiful boy who can never tell me what happened.

 

 

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

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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 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 suggested, 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. There are two things you need to know:

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

2.   I have ASKED  for this kind of 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 we get to know. The nuances are never there for us. We don’t get to hear if they are making a new friend, if someone hurt their feelings, or if they liked something they learned about. And those things are definitely happening in my child’s world. 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 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.

It’s Not Your Mother’s Mother’s Day

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(originally posted Mother’s Day 2016)

To my children on Mother’s Day:

You did not ask to be born.  You did not ask to walk this earth and you certainly did not create your own realities and struggles….at least not yet.  You did not get to choose me as a mother.  I can guide you in ways that I think will ease your journey but ultimately your external successes and failures will be YOUR successes and failures.  You get to have those on your own and I will rejoice and celebrate and swell with pride as if I created those monumental moments but I do not get to take credit for those.  I will feel guilt or shame or sadness in your failings or perhaps I will distance myself from them for those same reasons, but ultimately I don’t get to take credit for those either.   Whatever respect or love you have for me through each stage of your lives is created, taught and fueled by me and  while those things feel like an expectation when it comes to a mother, in every other situation those things are earned….I will assure you it is the same in our case. It is not my expectation that you celebrate me today.  If anything, the onus is on me to celebrate you.  You made me a mother and by proxy after 35  years I was given the gift of the ability to feel love unconditionally.  I don’t choose to love you…..I have no choice.  What I do with that part is up to me. You do not owe me for being attentive to your needs, by making you a priority.  That is my contract with you regardless of circumstance.

So on this Mother’s Day, I celebrate you both.   The loves of my life.  May you:

–Never feel as if your existence was a burden to me.

–Always feel like a joyful priority, even when I have forgotten to appreciate that myself

–Recognize that you are separate from me….that my sadness is not your sadness…my expectations should not be your expectations, my disappointments are not your disappointments.  If I am doing this right, I will not feel like your obligation.

–Know that in my humanity the above might not feel that way because nothing makes me feel more joy than your joy….nothing makes me feel more worry than your worry…and unfortunately there is not much I can to about that.

–Never feel less because I acknowledge your differences.

–Always feel safe in telling me your thoughts and ideas no matter what.

–Know that when I don’t understand your needs that you may not be able to change that but you can ask me for more patience

–Always feel the love and respect I have for you and I hope that I have done my job in teaching you how to have the wisdom to distinguish and create healthy distance as you grow when others are not treating you with love and respect who should be.  Including me.

–Know that if I am feeling selfish or if I cannot manage something when it comes to you I will protect you from that by being honest so you never misunderstand my intentions.

If I am raising you right, for me every day should feel like the holiday we are told is Mother’s Day.  But for today, I celebrate and thank you for being given the privilege of being your Mom. Now let’s get to the Zoo.

xoxox

 

 

 

Autism Awareness Month: Y is for Youth

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(originally published April 2015)

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 inhabitants 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. (Feel free to smile at this picture….)

Autism Awareness Month. V is for Village

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

Autism Awareness Month. 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

Autism Awareness Month. O is for Obstinate.

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O is for Obstinate

All kids can be defiant. All kids can be persistent. Most can be both at one time or another…..however the persistence of a person with Autism can sometimes be far outside typical willfulness of even the most obstinate of kiddos. Most of this stems from intense need for familiarity, order and sameness of routine. This rigidity is part of the diagnostic criteria of Autism Spectrum Disorders. Sometimes I have no idea what will trigger A2 into a 3 hour long battle of wills. What can be a 5 minute routine one day can take 2 hours the next even when he knows that routine ends in something he enjoys. A1…no matter how much punishment, berating or time outs he got, he would get right back up and do the same thing over again. One summer I decided to ‘put my foot down’ and send him to the time out step after every single infraction.  No warnings.  That should teach him!  After about a week of this, there was a day that I had sent him 17 times all before my husband got home from work. And he went willingly. Every. Single. Time. Something was very wrong and thankfully I had a moment of clarity.  I got a clear cup, drew some lines across it and found a bag of marbles.  Every time I caught him doing the right thing, I would throw a marble in the cup with the caveat that he couldn’t point out to me how good he was being. Unless he hurt someone (which he never did), there was no more time out step. Every time we filled the cup to a line, he got to pick what we did next in our day.  If we got to the top (by the end of the day), he could get a dessert after dinner.

Just. Like. That. Everything was different. He would listen the first time and look out of the corner of his eye to see if I was digging for a marble. He got double marbles if he initiated social interactions. Before long, we were engaged in pretend play in the basement.

I had someone close ask “Don’t you think it might not be autism?  Don’t you think it is could be his personality?”.

“Well, ” I indulged “if everything we do serves a function, what function do you think his behavior served that week?”  Without much hesitation, she drew her hand up as if she was grabbing something and said “To have a ‘gotcha’ moment!” I thought for a moment.  “What 4 year-old would rather sit on a step over and over, day after day instead of playing just to get under his mother’s skin? Isn’t a week long enough to learn that without the behavior increasing?”  A four-year-old.  Clinically, that would be a much, much bigger issue than autism.

Before that, I used to joke about how even a dog can learn to salivate to the sound of a bell when paired with food over time, yet I could not get my child to understand how his behavior had anything to do with the consequence he would receive. It’s one of the most bewildering and frustrating parts of parenting because regular consequences do not work. Though A2 may connect consequence to behavior in the moment, the pathology outweighs all and it is likely that he may not learn from his behavior for the next time.  A2’s Childhood Apraxia of Speech required us to do drill work with cards for sounds and words over and over.  Did we create some of this rigidity with him because of this?  Probably.  Did I have any idea that would be possible then?  No. But the trade off was that he learned to try to speak and can make some needs known so that people other than me and my husband understand.  Was it worth it?  As a parent with limited understanding and resources  I would have to say “yes”, because he displayed rigidity before that.  Even as I add to this blog post from the original version written two years ago, I realize how much I have learned to even question if this was possible.  We have lots to continue to learn.

Autism Awareness Month. Day 1 2017: A is for Ableism

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Ableism: discrimination or prejudice against individuals with disabilities

(https://www.merriam-webster.com/dictionary/ableism)

“How old is……are you?”

The little girl in the pink rain boots corrected herself as her eyes darted from mine immediately to A2’s. He was staring out the window of the observation tower where we all stood and flapping in excited anticipation of a single engine plane landing right in front of us.

She licked the open space between her missing teeth and twisted her body from side to side. I looked back to A2 since he wasn’t answering her.

“A2…..this little girl wonders how old you are.” I said to him as I touched the corners of my mouth as a starting cue for a long /e/ sound.

“Sevuh.” he said without looking way from the window.  I touched his back and then his chin and he looked up.

“Eeeeelehhhvuh” he replied, eyeing me closely for the cue.  I looked back to the girl to see if she understood.  She bit her lip and looked up at her own mother.

“Yes, you ARE eleven!” I clarified and then paused to gauge interest.

“A2….you could ask her ‘how old are YOU?'”  I stated in a futile attempt to redirect his attention from the excitement of a helicopter taking off from a landing pad.

Hannah was 7. And her brother was 5. And her other brother had his birthday this weekend….and he is 3. And her uncle lives in North Carolina and he came in to town for the party and now he was flying away back home. And there were green cupcakes at the party. With rainbow sprinkles.

STOP.

When you read this, what do you take away from this interaction?  How did it make you feel?  Did you picture yourself as the parent?  As the little girl in the pink boots?  As A2?  Or maybe you pictured yourself as the mom of the girl?

Since I was there, I will share my perspective.

  • Had A2 been in almost any other physical environment, he may have been the one approaching the girl rather than the other way around. He may not have automatically told her “seven”, the oddly missing number from his rote lexicon from one to ten.
  • I saw an opportunity to practice social language and articulation. Another child asked him a direct and appropriate question in a shared environment.  In our society, it is the norm to make conversation in environments such as this. Even though he was distracted by something exciting, this is still the norm.
  • I saw another child who appeared to not understand what A2 said and also appeared to not know what to do next.  It then became my role to subtly articulate for the other child and to cue my child’s part in the conversation.
  • When I saw A2 was too distracted to engage in anything socially meaningful to this little girl, I engaged her for a bit to see if he would enter in at any point.
  • I was thrilled that this young child caught herself and re-evaluated how she wanted to ask her question and presumed A2’s competence by asking him directly.
  • I felt frustrated A2 missed a social opportunity.  I felt sad he would rather flap his hands.  I felt gutted to get more details about a 7-year-old-stranger’s weekend than I have ever gotten from my own child about his day.

I imagine the little girl’s perspective looked something like this:

  • I don’ t understand why he talks like that.
  •  I know when people want to know how old I am they ask me. They don’t ask my mom.
  •  I wonder if he wants to know my uncle is flying a plane?
  • He didn’t know how old he is.  I wonder why he won’t look at me after I asked him a question…I feel uncomfortable now.
  • I’m glad that lady asked me about my weekend.  I love cupcakes with sprinkles and was glad I could share my favorite part.

A2’s perspective might be:

  • Humming of airplane motors sounds like the humming in my body.  The propellers move so fast, but that is how I see so many things…its like I can see each blade when they spin.  This is the only place I get to see anything like this! I’m so excited!
  • Mom is tapping me.  She wants something.  When I respond to her, she will then leave me alone and I can finish watching.  I better look up.
  • That little girl has nothing to do with this experience right now.  Why does she need to know how old I am when there are machines flying into the sky?!

Of course, I have no way of actually knowing the perspective of the little girl or of A2. I can only assume according to my own interpretations in the moment and based on my previous experiences.  I may be completely wrong.  The only perspective in which I truly have full insight is my own as evident in the richer description.

WHAT IF…….

Is it possible that my intervention was sending a negative message because I didn’t fully accept where my child was in the moment?

Because I expressed honest thoughts and feelings over the scenario, does that mean I perceive my child who happens to be disabled as less?

Were my choices in this situation potentially fueled by own differences?  Would it matter if they were?

If I did nothing, would the girl have pressed on?

Would her mother tell her “come on, he can’t answer you” and leave before the little girl could wait him out?

Would she have learned that in the future not to bother to ask questions of kids who flap and have trouble speaking?

Should I have insisted he turn from the window?

Should I have answered everything for him?

Should I have explained what she could do to connect with him in the moment?

Should I have insisted the mother help her child connect with mine when he didn’t answer?

Do I represent all mothers of all autistic children?  Mothers of all children with Autism? All Autism Moms in this situation?

Does she represent all 7-year-old neurotypical children?

I am a parent.  I make many decisions for my minor children every day. I make them do things that go against what they want to do because that is an uncomfortable reality of parenting.  Sometimes I give in to things when I am feeling tired or lazy. Other times, I just make the wrong decision or don’t respect their feelings and apologize later. The fact that I am literally my child’s interpreter due to his disability complicates this parenting thing because I cannot untangle the ball of cords that being a parent to my child vs. being a parent to my autistic child is. I have no choice but to parent him from the only perspective I have day in and day out just like every other adult given the privilege of parenting. The thing I know for certain is every decision and action comes out of the intense and blinding love I have for them.

As a society, we are all learning together what it means to be inclusive, accommodating, and how language can affect disability rights.  The growing pains with this process are palpable.

Subcultures and their preferences exist in any community and are often elusive to the general population. But these issues tend to sit right below the surface for the group affected, creating a dissonance that effectively can halt any movement forward outside of the culture.

A simple/not so simple example:

Many adults on the spectrum prefer “autistic” as they do not see autism as a disability but rather as a difference.  Yet, in academia, person first language is still being regularly taught. Some parent perspectives dictate a different mindset around autism preferring “has autism” and would never refer to their own child as autistic. As a professional in the field, writer and parent, I trip over how to refer to autism, my kids or myself for fear of sounding ableist and this nuance could alienate the very community for which I want to advocate, regardless of my perspective in family systems theory.  When asking my own kids what they prefer, one says “yeah” to either option leaving me as his parent with the choice. The other has told me he doesn’t want to refer to it at all because he doesn’t care, doesn’t know why it matters or why he would ever have to explain it to anyone to begin with.  Clearly, this hot topic within our autism community, this invisible topic to the general population, is a complete non-issue to my boys.

It is all about perspective.

There are many voices making up the autism community.  There is a tentative balance in how we talk about autism and how we approach the disability perspective in the community. Perhaps it is because there are some great, big general rules of thumb when it comes to respecting individual differences and abilities. Perhaps it is because disability voices should get precedence as representative to their individual needs and possibly the needs of others.  Perhaps it is because sometimes those individual narratives are different from the realities of many families and it becomes difficult to separate this inconvenient truth when there are no other options.

My goal as a parent is to give my children as many opportunities to be successful and independent as they can be which means the choices I make for them as I google how to unwind that mess of cords will be based on their individual needs and the options and resources available. I also recognize that we do not live in a vacuum.  My experiences and access and circumstance dictates certain necessities.  I absolutely cannot expect that society as a whole will know or understand how to accept and provide the individual needs my child has based on his disability when I am not even certain I always know what they are.

There will always be Hannahs in pink rain boots who approach disability as a curious difference.  Whether she grows up with the same perspective is up to us as individuals, as caregivers and as a community in these brief moments. The one thing I know for certain is we are evolving toward a collective understanding from many different perspectives and these perspectives come from a place of respect and love. Almost always.  We all have to be better.

Day 1 2015: A is for Aides

Day 1 2016: A is for Advocacy

Autism and the Dentist: Top 5 Tips for Successful Visits

How in the world has it been 6 months since I have taken the kids to the dentist? After a rousing success this fall, I thought I’d share this again in hopes we can recreate using my own advice! Any tips or tricks for your kiddo at the dentist?

Running through Water

**DISCLAIMER**.  The first half of this is the How Did We Get Here part.  The second is How Can You Maybe Get Here part.  Feel free to scroll to the second part…I promise you won’t hurt my feelings.

“How’d it go?”  I hacked out with the phone resting between my ear and the bed.

“Well,” my husband hesitated, “After he bit through the little mirror thingy and puked all over the dentist she told me that you should bring him from now on since you have more control”.

I usually took A2 to all medical appointments but had succumbed to a virus that resembled the plague and the only thing worse than me having the plague is A2 having the plague.  Normally, Mr ATeam and I are a pretty good team when it comes to him but one area I quietly held resentment was having to be the heavy when…

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