Parenting

A is for Aides :2020 Autism Acceptance Month

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10 years. 23 women. One little boy.

For the last decade, A2 ages while his aides do not. Time stands still as they enter our lives at 20 and exit at 22 again and again and again. All the while, A2 ‘s clock continues to tick away putting him closer in age to the next new soon-to-be-best-friend to come on board. He is still little and adorable and fun loving, but a teenager nevertheless. A teenager with care needs that are still very much in line with what they were when our very first 20 year old walked through the front door.

Each year that passes, A2 is more acutely aware and uncomfortable with this fact on a few levels, which in turn makes me uncomfortable with the skeleton crew of potential candidates I must independently identify, recruit, interview and hire folks with little to no experience with Autism. Every year I wonder if I should just provide all of his care and community support myself. I have been faced with this challenge for a year here and there at a time while also trying to find balance with my work schedule. In the long run, that is actually far less stressful and overwhelming (albeit, unpaid) than the Groundhog Day treadmill year after year of the anxiety of locating the right person,the training, the supervision, the getting over the behavioral hump, the getting used to having a stranger in our home and trusting they keep our personal life confidential/my child safe-always and no matter what, and the anticipation over A2 ‘s grief and lack of ability to process that with us when they leave our world.

And then I remember.

I remember the laughter and energy and patience for a boy who deserves nothing less on days when my own dark places pull those things under the blanket with me.

I remember new words and habits and skills that I know I didn’t teach.

I remember roller coaster riding and sledding and jumping into cold pools-things I wouldn’t dream of trying with him (or without him, actually)

I remember relief watching a young A1 be welcomed in to play, given the same attention and love by those who saw that he was here too and just as worthy of the special time his brother deserved, even though no one specifically told them to do so.

I remember birthday presents, phone calls and gifts, just because. I remember off the clock offers of babysitting just to give me and Mr. ATeam a date after not having one for over a year.

I remember A2’s uncanny ability to sense the unspoken leave-at-the-door moments that would go past my radar until I saw his care and loving behaviors.

I remember the phone calls from new professionals telling me about a challenge they faced in their new career they knew how to handle from what they learned working with us

I remember my beautiful boy has no people who know his life inside and out, backward and forward other than me and his dad. With exception of the select few who come here to work under a supervisor who often forgets to show a soft side or appreciation and yet they choose to stay here for a year or longer.

I find I am just as appreciative of this village we create year after year as I was in 2015. It looks different today. I am more tired, less patient with the learning curve and more concerned about the days and years ahead since I now have the wisdom of just how fleeting they are as we barrel toward the thing-that-keeps-me-up-at-night. However, I have had the opportunity to see the future of these college co-eds who come in and out of our life in the blink of an eye. I know special education teachers, speech and language pathologists, occupational therapists, RNs, Psychologists, Social Workers, Disability Advocates, Trauma specialists, Physicians. I see mothers and wives. I see women who seamlessly moved to their next stage in life from A2 better equipped to understand what Autism looks like from the inside and hope it has helped fast track their perspectives as helpers

I sure know that if that is true, A2’s purpose is far greater than I could have ever imagined and I just know if he understands that, it would only contribute to the joy he has for the things we all take for granted.

A is for Aides: 2015 Autism Awareness Month

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

A is for Aides: 2020 Autism Acceptance Month

Autism Awareness Month 2015: A is for Aides

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Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

At The End Of The Day….

Jaycee Kemp1 Comment

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

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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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Autism Acceptance Month 2019: C is for Community, Comradery and Common Ground

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  • 1000 ever changing fingerprints at the Smithsonian in Washington DC

Autism Acceptance Month 2019: C is for Community, Comradery and Common Ground

These words resonate for my own beautiful boy. My own beautiful family. I am an accidental blogger. There are many reasons I am out here….none of which have come to fruition (yet). A morphing book for a few years and when people ask, they are surprised to learn it has nothing to do with me or my child directly. I kept learning how I should be out there to those who would be interested in the content.

But, you see, this is still all very weird to me.

I didn’t want to write on social media because the dissent and judgement within and among communities…the ones I believed were the same, were awful. It seemed to me everyone has ill intention, everyone is ignorant. I have enough drama, thank you very much. Why would I invite more? By not writing at all meant not sharing it, which meant self care.

I didn’t want to write because even in my personal life, very few people get to know my details. Talking and sharing vs. relating and sharing are different. People tend to fade to black in a cinematically predictable way when sometimes those things are just way bigger than one can make them look while out and about buying the groceries and weed killer. Those melodramas occupy enough space, thank you very much. Why would I drag people into that when we maintain so well over here? By not writing at all meant protecting thoughts and ideas which are uncomfortable or inconvenient to others. Ultimately for me too since disappointment tends to hit me like a wrecking ball.

In the end, regardless of where we know each other or how, I am fairly certain, we are looking for the same end result. By not writing, I did not have to debate this.

Having perspective is a little like breathing. We all do it and at the pace comfortable for living to the best of our ability. That breath adapts to our situation even when it changes. Sometimes it is even vastly different than our original irrefutable pace. When I walk up the steps to my room at home, I find myself stopping and catching my breath 3 or 4 steps before the top when just 4 years ago I could perform literal circus tricks in a hot yoga studio.
And while my Lululemon tush wouldn’t have said it out loud, it may have not really understood what it meant to need rest before reaching the top of a staircase, because it never had to before. I may have had recommendations on the misguided beliefs about why it meandered its way up at that speed in the first place. And I might have been wrong-ish, but a vague foundation of knowing why. It didn’t completely make me wrong any more than it also didn’t make me wrong for now knowing I now need to rest for a moment on the banister.

The love for our children. The love for ourselves and the life it seems we thought they should live with us. The love for ourselves as individuals doing the best we can and trying to find others who might say the same. We all want the same thing and it seems to always be based in love and dignity and preservation. Even when from a different angle, that does not appear to be the case.

Before deciding how someone else’s world is not just wrong and different, but destructive, I implore you to stop on the 3rd or 4th step up on the way to your room to take a breath first and then decide how to describe how to better take that breath.

It is easy to say this perspective is not about privilege when we have the option of discussing it in the first place. It is easy to say it is not about privilege when we are groundskeepers and spectators of those we are discussing. If we have love in our hearts, perhaps the common ground in our community is to say we are trying to champion and triumph the same fights. And knowing that is when I decided perhaps I should write.

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

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halloween
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

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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

 

 

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

Jaycee Kemp1 Comment

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Originally Published as The Tail Wagging the Dog 9/2015

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

Until he is not.

And then, he is a bit of a sonofabitch.

And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog.

The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone else’s beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred.

These times I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea of giving him back to the service dog agency. Wally came to us in a somewhat miraculous way. I relinquished the idea of a service dog for A2 years ago when I learned that an application was only the first step in a lengthy and costly fundraising and training endeavor–a cruel (but necessary)paradox for a middle class family supporting a child with a disability. So when I saw a post in a local Facebook mom’s group about this agency’s need for foster families for their breeding program it was a no-brainer. He had been through an advanced training program, came with the bright orange “do not touch” vest (that as it turns out that as a whole people just ignore) and most importantly, neither of my children reeled away from him in fear of barking or jumping. I could get used to having to drive out to the agency on a moments notice for his doggie duty or the fact that as an intact male he has a certain
“je ne sais quoi” that at times makes me feel uneasy explaining to groups of gathering and inquisitive elementary school kids.

While this dog is not trained specifically for my child, I had notions of things. Wonderful things.

He would have the gumption of a sheepherding dog and rustle A2 back off to bed at night allowing all of us a full nights sleep. He would have Lassie-like receptive and expressive language skills to alert us if A2 wandered off…or fell in a well….or were lost in a canyon. He would be A2’s best friend and would play ball, endure endless tummy rubs and kiss away tears. But alas, Wally is not trained to endure colossal meltdowns or high pitched screaming. A2 is obsessed with Wally’s nails needing trimmed and is also wholly mortified by his noisy and explicit grooming habits.

It often feels more like they are roommates who met out of necessity on Craigslist.

We wanted Wally to be for A2, but really, we wanted him to be for us. We needed extra eyes, extra sleep and fuller hearts knowing A2 had a friend. But its not looking like this part was meant to be.

The surprise twist here is that I did not anticipate that Wally is here for A1. We didn’t see that one coming at all.

I have watched A1 learn to use inflection in his voice to get him to follow a command or gain his attention. Wally’s presence is forcing A1 up out of his gaming chair to take him on walks or throw a ball or frisbee. He is quickly using perspective taking in a way I have never noticed in questions such as “Do you think Wally likes me? How can you tell?” or “Mom, I feel so bad. I wish I could give him some of my sandwich. Is this how you feel about me with my Celiac when other kids are eating gluten around me?”

My beautiful, slow to warm boy who would rather not touch or be touched is slowly but voluntarily petting, patting, feeding and cuddling Wally. Though it took me years to understand and accept that A1’s needs and worldview are just very different than mine, I have always known that forcing my motherly agenda would only reinforce his discomfort. And in a very rare moment–maybe the second time in his life–just last night while watching TV he scooted closer to me on the couch, leaned in, and rested his head on my shoulder.

So Wally, you are off the hook.

I will humble myself as I once again issue the world’s most awkward apology and assure the neighbors that we have no intentions of keeping their dog since you have clearly claimed him as your own just as long as you keep doing the stealthy, stellar job you were given to do here with us.

If You Met Us At The Border

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adult affection baby casual
Photo by Pixabay on Pexels.com

If You Met Us at the Border

OR

5 Random Reasons It Is Hard to Share Lately

1. I have 84 drafts sitting in my queue in my blog.

Yes, you read that correctly. 84 unedited pieces of work. 84 separate ideas.

If you read my writing, you know I have 3 styles: 1. Poetry 2. Educational/How To/Advocacy 3. Creative Non-Fiction. Sometimes I struggle thinking I cannot “find my voice” in my writing, but I do believe I have. It is all 3 of those voices, just like most of us have in real life. It is the topic that tends to remain consistent–it is about the intense, over -the-top love I have for my child and the intense, over-the-top worry I have for him not because of who he is…but because of the world he lives in…even with, or in spite of me, his extra-human mom who sometimes needs silence, sleep, pre-children normalcy and sometimes just moments where I stare off into the void.

2. “Children do well if they can” –Ross Greene PhD (As a reminder…children grow into adults. Adults who do well if they can. Adults generally have greater levels of understanding as to how to access the “doing well” part depending on the function of their needs and the values they were raised with. Values which may be different than mine.

3. My children have a level of privilege and comfort that even to many, many standards in the US is considered luxury. We are still working class, but we were born into the jackpot of privilege for no other reason than chance. My parents are not college educated and I grew up in a single parent household for much of my single digit years. My father came to the US essentially as a refugee as a child. He came with a small handful of family because the rest were dead or missing. My husband grew up in a small town where his mom was the primary bread winner as a teacher. But we both have above average IQs, were loved, physically and environmentally safe and were raised to know we were supposed to go to college and have jobs. And the people around us were raised to just look at us and think the same thing.

4. My son is significantly disabled. Given he is 13 now, it is fair to say at this point that he will likely not live independently, drive a car, read, earn a full-time fair wage. To be clear, this is not “lack of hope”, this is reality based on his cognitive functioning and the environment which will only marginally accept him. We live in the top public schools in the state (actually, in the nation too). He plays basketball, baseball, bowling and golf in special needs leagues. He has access to medical specialists around the state to monitor his progress and needs. I fully believe he is alive and thriving because of access to local, state and federal funding for services/supplies that would be far out of reach for us as a working class family–and yet, still far less than he needs or deserves.

5. All of the above makes it very, very difficult for me to share about the present and future realities for my child who has needs and who always will have needs and dependency. In a time where regardless of politics, policy, law or any other justification posing as morality….please, please remember that this child at the border’s mother might have at one point had the opportunity to write the same 4 seemingly random ideas.

If nothing else…if desperate families from other countries can be made an example and sacrificed and divided, allowing the children to be made the pascal lambs for the “sake of the rest of us”, please don’t take for granted how our own use of resources for our children might be viewed in the same way in the near future. We also ultimately won’t fit the bigger picture.

What lengths would you go to for your own child? What risks might you take? Where would you go for them?

#autism #disability #love #parenting #HumanRights #WhatIfItWereYourChild #KeepFamiliesTogether

#ToTheEndsOfTheEarth #children #vulnerable #writer #blog

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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