At The End Of The Day….

I was in a research study recently involving blogging, deciding upon content, deciding upon platform, media, etc. It truly was an interesting experience–I guess no one ever directly asked me to tell my story in such a way before. While they interviewed over a dozen already, many of which where “mom bloggers”, I was the only one interviewed who addressed experiences as a family living with disability.

Their takeaway they volunteered to share with me? Their experience with other parent bloggers did not include the same judicious protection of content/overcontemplation of concern regarding the forms of dignity I discussed, nor did it involve the level of scrutiny that dug as deep as our level can go. And yes, they do blame their kids for tough days or recognize the universal struggles in a laughable or relatable way and are rewarded for that relatablity on social media. No one else struggled in that balance the way we do.

In our world, there is a fine line which moves it’s position depending on who you are talking to. We have a job as family caregivers of disability to be relatable advocates who set the bar for how we and our kids are perceived by the rest of the world. And unfortunately, I do believe it can be at the expense of self care or which ultimately affects they way we cope within our family systems for the benefit of our charge. We are held to a much higher standard out there in cyberworld under much more challenging circumstances than other parents. I forgot about this piece I wrote a few years ago, but it was on a day I had a similar epiphany at the end of a long, hot summer. Sometimes, I want to say funny things about being a mom too. And yep…sometimes I am selfish.

Running through Water

bunny hillThere are some days that my heart breaks selfishly a bit.

Days like today.

As A2 gets older there really are no more play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cuing socially reciprocal behavior are going to inhibit his peers age appropriate wing stretching.

Today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” sign at the base of the water slide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things…

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Autism and A Gun By Any Other Name

I vowed to share this every time there was a mass shooting. But since writing this article, there have been over 800.

Not 800 people. 800 instances of someone taking a gun somewhere and there were 4 or more casualties.

My child can’t process what he knows, fears or even experiences with me without any nuance. This creates a different level of parental paranoia over his safety in which to be judged. He will never, ever, ever be the “good guy with a gun”–the only argument–and a wildly circular one at that, about how to fix this problem.
None of this is ok for any of us. Autism or not.

Running through Water

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…

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Yes, My Disabled Child Has Chores

Many years ago, one of our first home providers was working with another family who had an older teenager. The provider and the client were only a couple years apart in age. (Don’t worry, -the provider maintained confidentiality the whole time!).

One day, I asked what kinds of things she did in her job with the client, to which she answered,

“Mostly, I help her do chores. There. Are. So. Many.

Given A2 was only about 4 years old at the time, I was simply curious about what life at home with a teenager with a disability would look like without actually considering what life with MY kid as a teenager would look like. We didn’t know our own long and winding road at that point, of course my child would have chores! Didn’t the provider have chores? (As it turns out, possibly not, since knowing far more teenagers now that my kids are teenagers themselves–this parenting philosophy I have might be a bit of a new millennial enigma.)

What happens if a teenager doesn’t have tons of independent leisure skills and has difficulty with self-direction? Do we still teach them how to play with toys? No. If they have not enjoyed this activity as a younger child, then probably not.

Do we leave them alone to wander the house with their iPad? Well…yeah…admittedly sometimes. Especially if they enjoy doing that.

Do we plan on living forever to take care of ALL their needs? Yes, yes we do, but until we figure out an actual way to do that, that is not an option.

The most basic of basic skills must be taught to A2 in an explicit manner. He learns all sorts of things, just like everyone else, but at a snails pace. By not teaching him how to care for his surroundings and belongings, I would be stealing from his adulthood to bank roll a leisurely adolescence. Those processes start NOW so he has a chance for a modicum of independence, the ability to have options and choices and self-determination as an adult. Learning to fold a washcloth may take a typical child 20 minutes to learn and an hour to master. The same washcloth skill might take a year to learn and 3 years to master. Really.

At 14 years old, he is in his evening of the day–the last leg of time being on his side before he is an adult.

A schedule that includes daily expectations gives A2 a sense of peace because he understands how his time will be filled. This summer, with a skeleton crew of help, Momma has been on the case to level up on these skills, scaffold independence and watch him enjoy and take pride in these “activities”. He verbally perseverates less. He comes to me beaming and says things like “Wook! Do it all by yourself!” as he surprises me with a made bed or silverware put in the proper drawers. He is generally, well….happier with chores.

Chores a narrative of dignity and self determination.

Caring for our surroundings gives us a sense of control, a sense of ownership, a sense of responsibility and yes, ultimately a sense of community. If he has to do his chores just like everyone else in the house (ok…maybe not just like everyone else…he actually does his much better many times than his brother!!), I am sending him the message, “You matter as much as your brother and are an equal member of this family” and I am showing his brother equity and fairness by saying, “We are all capable of contributing in the ways we can to this household–A2 is no different”.

I am not a mean mom (most of the time). I like to think of myself as the same kind of mom who makes her sick kid take icky medicine when he doesn’t want to, knowing it will make him feel much better. Not giving the medication makes me feel better because it is easier and I don’t have to see him cry. At least in the moment.

Chores are a pain in the butt. I DEFINITELY have chores I will still whine through, procrastinate doing or forgo altogether. While being an extremely Type A personality and capable of high levels of organization, I am also extremely messy and it happens FAST! I do remember how this unfortunate dichotomy affected college room mates, though at the time, I absolutely did not see the impact. I had to learn that the hard way.

One of my current chores is digging up the patience and consistency to make sure I am teaching A2 how to put his plate in the sink, start his laundry, or wipe down the counter. These tasks are the insurance plan for a future that probably will not include me. As scary as that is to consider, I certainly hope one day it is because he looks at me and in the most apraxic adult way possible says,

“Mom, I don’t want to live with you and Dad anymore. Don’t worry, I have already cleaned up my room and packed my suitcase.”

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive for Kids With Invisible Disability

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

(originally posted 10/2015)

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents the goal was for all children to be included, be safe and have fun. I was perplexed when one parent refused to change a cookie decorating idea which did not meet these basic criteria.

Kids who can’t make or eat them can at least enjoy them for how cute they are!”

In what I believed was a teachable moment, I reminded her this still excluded a fifth of the class and also created a potentially dangerous situation. This parent became so incensed that she quit the committee. While I still get as excited about Halloween as the next guy, I was horrified as one of those children was mine.

Another parent was willing to not only exclude him, but risk his safety because she was so excited about her adorable cookie project.

Halloween has become the holiday where those children with differences become the most exposed and have the potential to be the most left out. The numbers of children with food allergies and other differences have risen sharply since I was a child. As a parent with kids with food issues and also autism, it took me many years to figure out ways how to adapt the most super-fun holiday so it was still fun. Turns out, there are lots of ways to do this both as parents and as community members.

Here are some of the top ideas for the “BIG 3” to make Halloween still the coolest holiday ever

1. FOOD ALLERGIES:

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

2. SENSORY DIFFERENCES

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

3. AUTISM

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

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

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

The anticipation of Halloween is still timeless. As a parent, I find myself still caught up in creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Harry Potters who could just very likely just be the same child over and over again capitalizing on those homes with full sized candy bars.

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

#autism, #halloweenparties, #halloween, #sensoryprocessingdisorder, #PTO, #specialeducation, #community, #inclusion #dignity #parenting #foodallergies #celiacdisease #specialneeds

Days of Awe. Mostly Without Feathers

Hope is the thing with feathers. 

That perches in the soul

And sings the tune without the words

And never stops–at all

Until it is hunted, killed, braised, barbecued and eaten.

–Emily Dickinson

Ok.  Emily can only take credit for only part of this….

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Three years ago this week, I was given the honor of speaking in front of my congregation during the High Holidays on the topic of hope. When the rabbi approached me 4 months earlier and told me the topic, I was sure I could pull SOMETHING together. I was flattered and thankful for the opportunity.

And then I fully realized my task.

Asking for five minutes of my time to convey what hope was like for me…in what I assumed had to do with parenting a child with a disability, suddenly morphed into the equivalent of digging for research for a dissertation. I was not sure what hope meant at all, though in fairness, I am not sure I ever fully understood what hope was.

I stumbled on the video link a year afterward and found the old me. Hearing this stranger speaking from the heart was jarring, yet familiar.

This is the (abridged) transcript from that speech.

I’m here to share my story of hope.  My family and I have been congregants here for the last 10 years.  I have two versions of the story I was going to tell today and I’d like to thank the rabbi for allowing me the opportunity to go rogue and tell a third one instead. 

So, I came here this morning with these two versions of my story of hope, not knowing which one I was going to tell.   And mostly because of Rabbi’s sermon last night on vulnerability, I decided to take the two stories and meld them somewhere in the middle to share my story in hopes that if there are people sitting here who feel the same way, they can recognize they are not alone. 

You see…sometimes its not about being hopeful or hopeless. Sometimes there is this vague middle ground, if that exists, in hope. 

I have a child with Autism and he is a sweet, beautiful boy.   And he lives with Autism.  An Autism that impairs him from a life of independence. 

I’m part of a family who is also living with Autism.  An Autism that impair us from a life of independence. 

Showing vulnerability is not particularly an issue for us because we have to wear our vulnerability very publicly.  I’m also pretty visible in the community, and because of that I sometimes feel like I am the “Autism Representative”. 

So, Side A is extra-super truthy.  It shows a side of hope that’s hidden away. That only parents with children with significant disabilities can understand. We hide away. But by sharing this truth of hope, I learned that being vulnerable or weak sometimes has a detrimental effect on my child…both from an emotional standpoint and also from the standpoint of receiving services or receiving help.  It also sometimes leaves me with a compound disappointment chipping away at my worldview of hope in a world where no one can tell me the outcome of my beautiful boy’s life. 

Side B is the very pretty version and it’s the version you might expect to hear.  Its even capped off with a prayer.  But its inauthentic and frankly on Yom Kippur I couldn’t see standing up here knowing there are possibly families I will be doing a disservice by presenting you with the shiniest, most inauthentic version that I could possibly provide of hope.  So thank you, Rabbi for giving me the opportunity to come and share my story.  To spend months studying and contemplating hope in a way that I didn’t anticipate.  Hope is not optimism.  It is not about expectation.  I have realistic expectation for my child.

It is definitely not the thing with feathers. 

I came across a quote by the playwright Tony Kushner and he refers to hope as a moral obligation.  Through all of this, that made the most sense to me. 

Hope just is. 

It’s part of our human condition.  That quote captures the vulnerability of hope as well. 

Just a few days ago I heard an anecdote that captures the best possible way I can describe what its like to sometimes sit in the shame of feeling hopeless for a perfect child living in a very imperfect world with a very scary and nebulous future.  *It’s the story a man told about his grandfather’s wife dying.  After 65 years, she was his lifelong partner and his driver and he wasn’t sure what state he was going to find his grandfather in the first time he saw him after she died.

So he walks in and says, “Hi Grandpa—how are you?  How are you doing?”  And his grandfather says “Did you know that for $4 I can take a shuttle to anywhere in the city?”

 The grandson says, “That’s great grandpa.”

And the grandfather says, “So, went to the grocery store the other day with a list and I went to the lady at the counter and I said ‘Can you please help me with this list?  You see, my wife just relocated and her new address is heaven.’” 

The grandson sits back and laughs and says, “Grandpa, you always help me see the glass as half full.”

The grandfather sits back, looks at the grandson and says, “No….its a beautiful glass.”  

So, my moral obligation today was not to make you think that those of us who have children not following the path of expectation are hopeless.  And it was also not to come up here and make you believe we are full of hope.  Because it lies somewhere in the middle.  If you are a person who sometimes struggles with hope…please know you are not alone.  Thank you.

On this Kol Nidre, if you observe, may you reflect on what hope means to you in a finite and fragile world also full of love and optimism and come out the other side recognizing the glass.

*an excerpt from the film HUMAN by Yann Arthus-Bertrand (2015)

Edited and rewritten from 9/2016

 

 

And Then He Was Gone

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Originally posted 8/2017

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. All’s well. Nothing to actually see here folks…

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

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(originally posted April 2016)

G is for Genetics

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

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

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

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

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

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

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

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

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

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

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

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

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

Sometimes We Cry

I cried twice today in public.

Once for me and once for him.

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

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

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

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

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

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

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

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

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

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

And sometimes We cry.

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

Who Will Light The Moon For Him?

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

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

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

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

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

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

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

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

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

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

#bluemoon #supermoon #autism #motherhood

 

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A2 fearlessly finds his way

 

 

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

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(originally published 3/2016)

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

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

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

Yes…I said trauma response. 

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

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

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

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

So I leave you with 3 truths….

A. I am human.

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

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

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

Sorry about the envelope.