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.

 

 

And Then He Was Gone

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My boy went missing yesterday. He went missing near water. Don’t worry.  There is a happy-ish ending.

I keep reading about the ““sweet spot” of parenting in summer.  This is the phenomenon where after years of hyperigilance, parents can relax at the pool because the $3000 in swim lessons have finally paid off.  You are now officially the chauffeur and the loan officer but no longer also the lifeguard and babysitter. Your kids have the buddy system at the local pool just by showing up to same aged classmates and are released free from the bonds of water wings and demands barked from mom suits.  The first summer a mom experiences this, she is ecstatic. I know this because I’ve spotted an alarming amount of women openly reading Fifty Shades of Gray in their lounge chairs.  Maybe there is a twinge of wistful “last time”, but ultimately their palpable sigh of relief to just relax next to the pool overrides preemptive nostalgia.

I’m not here to wax poetic about the woes of the special needs parent at the pool because I have already done that and also because we too have a sweet spot….it’s just different and likely the bruised part of the banana people normally cut off.  If I could cut that brown spot off I would for some things. Things like yesterday…..

We have a pass to our local water park. A2 likes spending the majority of his time in the young children’s area full of manageable water slides, spinning water wheels, hoses and a non-slip structure featuring a giant bucket on top which slowly fills up every 10 minutes and dumps gallons of water on the crowd gathering below in anticipation. A2 doesn’t mind water in his face and the bright colors and sounds–the constant movement and slow drips of water are the things of joy for him.  I hate Monkey Junction.  I navigate it alone, pudgy and pasty. The water is 25 degrees colder than it is in the wave pool and in order to stay close to my kid, I have to follow him through the maze of spitting water getting me wet and cold enough to use guided imagery to disassociate myself from my sensory differences. A2 is now 12 and still cannot swim which works out fine at Monkey Junction with its ankle deep water. I have attempted to entice him to follow the structure up to the far more exciting curly slide where kids closer to his age might be. This is still met with the same screech and Houdini-like limb disjointing to remove himself back to the same 4 places he prefers to stand and flap as he has every year before now.

This year, I realized his predictability was my sweet spot. Yes, I participated in his happy, flappy, water drinking glory and slid down short slides with cloudy and disturbingly salty/sweet water at the bottom.  But I also let him have that time to do his thing without me trying to redirect him.  I plopped down in a super-short lounge chair situated 20 feet away from his predictably favorite places and this year…..I dared to open a professional journal.  Ahhhhh…..the sweet spot for me. Read two sentences, see where A2 is….read two more….yep…same place….. “Ok, just like everything else…we have a modified sweet spot and here I am living the dream!” I thought to myself.

About 5 minutes into this, I looked up to see A2 was standing at the bottom of the baby slide flapping away to toddlers making tiny splashes against the yellow curved plastic.  A crowd was gathering under the giant bucket….the next stop in the pattern of stimmy afternoon fun. I almost felt smug. Moments later, the bucket dropped which is normally my cue to go and join A2 and shriek in excitement with him.

Only he wasn’t there.

HE WASN’T THERE.

At first, I shielded my eyes in the late day sun.  Stinker.  He changed his pattern.  I looked to the 3 other places.

HE WASN’T THERE.

Why had I never noticed the deeper pool near the equipment before?  I have an overactive amygdala (that place in your brain responsible for fight or flight). My movements can appear more dramatic than I actually feel but my monkey and human brains caught up to one another pretty quickly.

HE WAS NOWHERE.

I breathlessly approached one of the lifeguards minding the 4th level of purgatory of Monkey Junction.  “My child….he’s missing.” I spat. “He’s wearing a white swim shirt and black and neon green shorts.”

“Ok, I’ll let you know if I see him.” he said without making eye contact, though admittedly he was wearing sunglasses and was standing over a slightly less blue pool of water of toddlers. “How tall is he?”

I made the imaginary yard stick hit my shoulder on my five-foot frame. “Here.” It then occurred to me my level of concern was not commensurate with the number of feet off the ground my hand was. I looked like a histrionic helicopter parent.  And then the overwhelm of panic smacked me in the face.  “…He’s 12 but he is autistic and can’t communicate with people he doesn’t know…he’s non-verbal!”,  neither of which are completely accurate.

How do you describe a 12-year-old’s safety concerns and the immediate nature of those concerns?

“Ok” he said again and went back to twirling his whistle.

I went to all the other lifeguards. One told me to calm down, they would take care of it.

“HOW?  TELL ME THE PROTOCOL FOR STOPPING PEOPLE FROM LEAVING THE PARK WITH A CHILD WHO IS NOT THEIRS?!  WHO DID YOU CALL?  THIS ISN’T GOOD ENOUGH! YOU CAN’T TELL BY LOOKING AT HIM! ”

Should I have not said he was 12?  Should I have directed what they needed to do? Was a full 30 seconds much too long to look away from an ankle-deep pool of water guarded by four teenagers?

I was now a lost child. Pacing in my worst nightmare, rendered with ineffectual words. Is this how A2 feels all the time? Desperately trying to communicate the weight of the world to stone faced dolts who completely miss the nuance of the message?

I ran from mother to mother begging for extra eyes in the way only a mother sees.  I was too afraid to run onto the structure for fear he would walk out past me unnoticed. One mother ran around the structure all the way to the top out of view, where she found A2 hooting and clapping to the older children releasing themselves down that same curly slide he refused to even approach the gangplank with the safety of an adult.

He clearly was not distressed as he left the play structure with her as she brought him to me….yet more evidence of my rightful concern. He would have left the play area with Jack the Ripper if he was asked nicely.  He rates highly on instructional control measures at school.  We have trained him to be compliant. No matter what.  I have never felt so nauseated and so relieved all at the same time.

Initially, when I sat down to tell this story it was with the intent on providing information on what to do if your child goes missing.  But 1200 words later it really felt more like I wanted to just tell this story of my fallibility.  I have not lost my child in 12 years…..but I did so for 5 horrifying minutes because I chose to look down for 30 seconds. Turns out the “sweet spot” is not something parents of certain kids get to have in the way other parents do…not even a modified version.  Because those moments taken for granted might also be moments of growth. Moments of increased independence and bravery in a sneak attack of pride and relief and fear.  I missed witnessing his milestone.

There is no playbook for this autism thing.

**Disclaimer: Security showed up just in time for me to tell them that the crack team of lifeguards did not find him, but a patron.  While they obviously did the right thing and got security involved, the utter lack of urgency and communication was the issue.  I am formally alerting the park to this concern. Alls well. Nothing to actually see here folks…

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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 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.

Dreams are Poetry for My Son Without Words

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What do you dream about sweet silent boy? 

The nights you rise up out of your bed and wander our dusty floors?  Are you looking for something you cherished for a moment in that mysterious place between the consciousness of dream and the awareness of waking?

Are you on an enchanted night walk floating through a maze of fireflies and bubbles unaware of the world that holds you back?

Could you be lost navigating the spooky hallway forest, familiar and friendly when the path is lit by the morning sun?

What do you dream about sweet boy?

Those nights your shriek summons me like the siren’s song to find you swimming in your twisted sheets?  My soft words are not your anchor.  You push me away from the helm with your kicks and punches as if resisting being dragged to the bottom of the sea by the mighty whale you have have come to exact revenge.

How do I teach you to breathe when you emerge from the black water instead of screaming?

You wake gasping for air.

What do you dream about sweet boy?

When you sit bolt upright rubbing the glitter of sleep deeper into your eyes with the fists that once fit in the palm of my hand?  You rise with a dreamy smile that does not release either of us until you snuggle in as close as you can. It is how you summon the halcyon to create the calm winds that smooth the waves.

You drift safely on your back.

Do you know you dream sweet boy?

Can you separate day from night? Do your lost words in the light morph into the demons in the dark who suck the words from your cherub lips?

Do nocturnal fantastic birds of flight carry you away and release you from your forced secrets of the day?  Are those birds the thing with feathers?  Do they chirp the same songs they sing to me?

Do you not dream at all sweet boy?  

Perhaps instead you play with angels who speak your native tongue.  You drift off to the place where I am not allowed to go with you. You run freely through the fields of joyous detail or you ramble in teary despair in the wings of the worldless knowing you are understood and safe.

Because no matter the circumstance of night, in the morning  you wake wide eyed and blinking and peaceful.

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Day 4 2016: D is for Diagnosis

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. 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. Day 4 2017: D is for Dreams. Poetry for My Son Without Words

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What do you dream about sweet silent boy? 

The nights you rise up out of your bed and wander our dusty floors?  Are you looking for something you cherished for a moment in that mysterious place between the consciousness of dream and the awareness of waking?

Are you on an enchanted night walk floating through a maze of fireflies and bubbles unaware of the world that holds you back?

Could you be lost navigating the spooky hallway forest, familiar and friendly when the path is lit by the morning sun?

What do you dream about sweet boy?

Those nights your shriek summons me like the siren’s song to find you swimming in your twisted sheets?  My soft words are not your anchor.  You push me away from the helm with your kicks and punches as if resisting being dragged to the bottom of the sea by the mighty whale you have have come to exact revenge.

How do I teach you to breathe when you emerge from the black water instead of screaming?

You wake gasping for air.

What do you dream about sweet boy?

When you sit bolt upright rubbing the glitter of sleep deeper into your eyes with the fists that once fit in the palm of my hand?  You rise with a dreamy smile that does not release either of us until you snuggle in as close as you can. It is how you summon the halcyon to create the calm winds that smooth the waves.

You drift safely on your back.

Do you know you dream sweet boy?

Can you separate day from night? Do your lost words in the light morph into the demons in the dark who suck the words from your cherub lips?

Do nocturnal fantastic birds of flight carry you away and release you from your forced secrets of the day?  Are those birds the thing with feathers?  Do they chirp the same songs they sing to me?

Do you not dream at all sweet boy?  

Perhaps instead you play with angels who speak your native tongue.  You drift off to the place where I am not allowed to go with you. You run freely through the fields of joyous detail or you ramble in teary despair in the wings of the worldless knowing you are understood and safe.

Because no matter the circumstance of night, in the morning  you wake wide eyed and blinking and peaceful.

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Day 4 2016: D is for Diagnosis

Happy Holidays! I’m the Room Parent. I Know You Have Never Heard of My Kid, But……

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Pinterest success for a classroom party.  Though, watch out for that reindeer in the second row on the right…he clearly is up to no good.

How we got to December already is beyond me.  I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.

I am a working mom with  a 5th grader and a 7th grader.  In the last 7 years, I have:

  • been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
  •  planned 9 Halloween classroom parties and 10 winter holiday class parties.
  •  baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
  • been a chaperone at EVERY  Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
  •  volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
  • sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
  • stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days

I think you get the picture.  An estimated 2000-2200 hours of my time since 2009.  Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no,  I do not want a cookie, a prize or personal recognition from anyone.  Other than to say this….

I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.

This is not an unusual phenomenon.  I had a conversation with a special ed coordinator in another school district about this once.  She also “lives in the field” like I do having a couple of kids on IEPs.  I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other).  Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.

I didn’t start off this way.  I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom.  While the 1970s were not known for tales of excellence in parenting,  as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.

Then Autism came along and and early on  I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity.  My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”,  he exclaimed after I asked him where he would like to have his party.  Since he had not been invited to any  birthday parties since starting school, I wrote several school staff asking if they could help with names.

The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends.  She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class.  And that was it.

I was perplexed.  She did know my child had a severe communication disorder, right?  I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.

No response. So after a week,  I wrote again but with a much more explicit message.

My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number.  That’s how typical children do that.  We have programed the following into his talker (speech generating device):

“My phone number is ***-***-****.  Can you have your mom call my mom?”
OR
“Can I have your phone number?  My mom wants to talk to your mom”
Given its on his IEP –the need to prompt him to initiate social interactions as well as guiding him use  prompts on the talker, I am sure someone will find the right opportunity to help him with this interaction.  Its amazing to see how far he has come.  As any parent would be, we are so proud and excited for him.”

Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.

(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own.  So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)

I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs.  When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals.  We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory  different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more  flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board.   Volunteering for the purpose of  learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity.  I am lucky to have this as an option, but many…if not most working parents of special needs kids do not.  The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.

So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are.  Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.

**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning.  Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue.  Stay tuned…if you are in this dilemma for your child!

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Now I lay me down to sleep….

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4:17am

My beautiful boy wandered into my room tonight.  His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose.  He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king.   I can’t say I hate it when that happens.  He is warm and cuddly and doesn’t thrash and kick like he used to when he was little.  To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why.   As he gets older, he seems no worse for the wear for it either.  The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed.   He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.

The thing is, my husband and I never wake up fully refreshed.  There are Things That Keep Me Up at Night. Who will hug him when we are gone?  Who else will find his sweet smile so endearing even at 3:00am?  We try to be optimistic about his future.  A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is.  We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future.   Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him.  I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can.   We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services  will help house him, feed him, care for him.  We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears.  So we plan as best we can knowing surely, there will be some kind of services for him.

But tonight there is no sleep because now I am not so sure.  I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb.  My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults.  I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”?   What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult?  There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.

The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle.  Perhaps I truly believed all that because I see the innocence in his eyes.  He is a pure soul who has helped me see good first and maybe I can spread that message for him.

So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you.  While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby.  But don’t worry….A2 won’t judge you.  He is forgiving and will love you anyway.

Gratitude with an Attitude. The Bigger Picture of Advocacy.

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It is time again for the November Thankful Challenge on social media. For 30 days people publicly declare the things in their lives for which they are grateful.  As a therapist, I can tell you its an excellent daily exercise in mindfulness–a way to connect and be present for those things we tend to take for granted.  Soul soothing salve in the bustle of every day life.  If we take a few minutes every day to reflect on the things that are going right amid the trashcan fires of life all around us, over time we can actually retrain our brains to become more centered, less reactionary and supposedly just happier in general.  It becomes a good habit.

So, why don’t most people take appreciative stock every day? 

I believe its because most of us have what we need (most and need being our operative terms.). So even if you don’t have much, you DO probably have a roof over your head, access to clean water, some kind of education and likely one person in your life who cares when your birthday is.  Those are things we easily take for granted.  This doesn’t always feel so much like gratitude in comparison in our rich-kids-of-Instagram kind of society and things like rampant poverty in the streets or young people regularly dying from things like dysentery or malaria are not infused in our every day life. Yet as special needs parents or as a disabled people, it feels like we are expected to display this type of gratitude in circumstances that at times feels just this imbalanced.

I have somehow won the life lottery and I didn’t do anything to deserve that any more than some starving, orphaned toddler in a war torn country did to deserve his lot.  There are many people who might look at my family and think otherwise since we were dealt the hand of having a child with a disability.  We have a life that can be exhausting and lonely and sometimes just very scary but what I find is that when life is that way, it is rarely because of anything my child has done or his disability itself…its more about the circumstances around him that prohibit understanding, access, equality or equity.

And thus the rub of the special needs parent and the expression of gratitude toward professionals who serve their child.

If someone asked my child’s providers,”Do you think A2’s mom is grateful for the services you provide her child?”, my guess is that at least 80% of them would answer no. They would be completely wrong, but still.  If that same surveyor could time travel and go back year by year to 2007 when A2 first started getting help and ask the same question, I  suppose that the percentage who would answer “no” would shrink in proportion to year asked.  In the last several years, regardless of how many holiday gifts, number of hours I volunteer, amount of money I donate, number of thank-yous doled out, at this point I am still going to be seen as a wistful pariah to those whom I ask more.

As A2 ages and the disparity in needs between he and his peers grows, so does the need for advocacy.  There is a pervasive belief system which keeps those who are disadvantaged in some way from asking for more and it is through the guise of gratitude and the false belief that the basics are a form of entitlement.  You are lucky to get what you get….even if it is not meeting your needs.

  • 20 sessions of speech therapy for your non-verbal child?  Well…at least your insurance gives you that much. Some people can’t get speech therapy approved at all!
  • I’m not really seeing progress in my child, but the aides are nice to him and he seems happy.
  • He doesn’t need a bus aide.  He can make noise so its not like it would turn out  like  that boy who died on his bus because they forgot about him all day….
  • Sorting nuts and bolts is a career for lots of people. She may have an above average IQ but she’s lucky anyone is willing to take a chance on her
  • Kids just love him here at school, but no….we can’t tell you who any of them are so he can invite them over and extend those friendships to the community.  At least kids play with him here, that says a lot about the kind of person he is.

When exposed repeatedly to systemic issues that shame you into to accepting less, you get a little crisp when it comes to the process of fawning over people doing the jobs they chose. Can you imagine for one minute being OK with your child failing a subject at school and then thinking, “well…at least no one is hurting him there”?  No…those things are not interchangeable.  Ever.  As parents, we want to always feel and show gratitude to those whom we entrust our children, but when trust is bent it dulls the surface.

A couple years ago, one of the school administrators let me know just how stinkin’ cute A2 is and how he brightens everyone’s day and how much kids just love him.

“He has made so much progress..he comes right up to me now and always asks to see the PA system!” she exclaimed.  I nodded and smiled and said nothing about how platitudes like that can ruffle the feathers of pre-adolescent special needs parents because, you know….gratitude and grace. We have to show ours a bit differently. It’s not that we don’t like the compliment, however very soon, that go-to strength of his of being little and cute, the thing that draws people to him and keeps people friendly  will be gone. Drinking out of a sippy cup with a full beard is not adorable. It will be confusing and odd to people who don’t know him.  And it scares the hell out of me. So instead I say nothing for fear of not seeming grateful for at least that.

“Yes, progress.” I say. “Though I worry. He still cannot read, we still have not cracked that code and he only has one more year here.”

She side eyed me with a friendly smirk , lifted her finger as if to gently stop me and said “Mrs. ATeam, you GOTTA focus on the positives.  You just gotta.”

Do I though?  

Focusing on the positives is actually WHY I have to advocate and ask for more. It is not for the purpose of making sure other people can see the gratitude.  More out of the box thinking, more time, more energy, more inclusion.  I see what he is capable of achieving all while being systemically reminded in IEP meetings of things he still cannot do, how services won’t be expanded to accommodate that fact and how planning for a future where if we are lucky, he will get to be a marginal member of society. Unfortunately when faced with this frustrating reality, as a mother I don’t have enough energy left over to make people feeling good.  I used that energy up in the front end.

My child lives in a society that sees the deficits, that sees the differences and believes that the slightest hint of meeting his needs because of his differences is an entitlement.  A society that believes that being adorable is a strength. A society that makes heroes and saints and examples out of others showing my child dignity when they come to work or are being a friend.  A society that doesn’t hashtag abuse, neglect, bullying and even murders against children like mine.

So team members…if you are confused about my level of gratitude for your involvement with my child, don’t be.  I am never short on gratitude and when my child is happy and progressing, what our collective efforts are doing is working. There is nothing I could be more grateful for, just like any parent.

But I understand.

I too have a job where the pay is low,  the paperwork is tedious and 100% of my work is about helping other people. I too am rarely told thank you. But that is not why I do what I do.  I am trying to make the waves to change systems and influence the way the world sees people who are at a disadvantage. By accepting less simply because we are told we should be grateful for what we get is the dysfunctional thinking that will keep things inequitable.. always.  I am doing the future of disability advocacy and everyone who works with kids like mine a disservice by this act as well. When I am sitting on this side of the table,  its my job to check and double check your work, ask questions and tell you when something isn’t working.  That is not the opposite of gratitude, that is showing you that what you are doing matters. Its the ultimate compliment.  My kid is your boss and I am trying to teach him to always get what he needs based on HIS different needs in this world.

I’m just trying to do my job as his mother, one that is universally never the recipient of gratitude is often met as if I am a villain and yet is still the most rewarding job in the world.