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.
I posted this 5-Minutes-In-The-Water video about parental instinct on my social media pages back in May. It is time to talk about it again as a teaser to introduce you all to something new we will be doing with A2, since it looks like it really, really is going to happen.
A2 on paper looks very cognitively, socially and intellectually impaired. A2 in person, looks like the prom king. He is adorable, social, friendly and seems to understand ways of the world which elude the rest of us.
My ultimate goal is for him to be happy, as independent as he can be and to rise to his highest potential to be a contributing citizen. Just like most people want for their child regardless of circumstance, right?
The thing is, he has to be able to learn. He can sit still long enough to learn. He is compliant and yet his learning is minimal, basic and cannot seem to transcend across settings, losing learning over time. If something is being reinforced at school, it is unlikely I will see him do it at home. Such is the nature of his apraxia and autism.
Yet I never had the sense that meant he couldn’t learn.
It just meant we were not teaching him in a meaningful way. We weren’t tracking where he learned the best and how (except for once circumstance…and it literally became the thing he could do well everywhere!). I found it odd that I had to convey the concept of generalization across settings. It was interpreted, “He can do it with Mrs. X in the resource room, gym and speech room”. My point was that if he couldn’t do these things at home or in the community, it didn’t matter.
It would be like saying I was fluent in Japanese, but only when I was in my kitchen and only when my one neighbor came over. Would it matter if I couldn’t speak it in any other circumstance?
However, last school year, the behavior support person in my school district spoke a bit about a ‘newer’ program called PEAK Relational Training System. She described what I had been trying to convey for years about how I think A2 learns and how to track this through cumulative data collection across multiple settings. I hopped a plane to the west coast and got trained for a Level 1 certification.
Being I have been the only consistent “team member” in A2’s entire life, case managing ALL OF THE THINGS educational, therapeutic, medical, religious and social…coordinating consistency, training, communicating across all settings. And like everything else, I can go figure out the best thing in the world, but unless I have a dedicated and well trained home team, have education professionals who are critically thinking , while also making them believe I need to play a tighter role and having that happen ALL AT THE SAME TIME, well, it is like waiting for a Super Moon on a Leap Year before the Jubilee.
So I spend most of the time doing a very, very crappy job for my child, or at least feeling that way because I cannot do any of this if even one element is missing. Sometimes that element is me–thus my hypervigilence in learning whatever I can to help. What I don’t know, I don’t know, and I am the physical consistency for him.
And here we are.
All the elements are in place, at least for the moment. He has been assessed and we discussed preliminary plans. Watching the behavior person’s eyes light and hearing her espouse the same mantras about A2’s ability with the right programming along with her sense of urgency to get moving has sparked a motivation I had forgotten when it comes to parental instinct. So, I move forward with cautious optimism. Stay tuned…..
I am fortunate to live near a Big 10 university and know some pretty progressive professors who let me come in to their classes every year and speak freely as an expert.
Why is that so progressive?
Well, for starters,they are not tapping into my professional expertise as a clinical social worker, advocate or behavioral therapist, but rather into my expertise as a parent of a child with a life long disability.
Also, in both my undergraduate and graduate studies in helping professions, not once did we talk about disability perspective or experience from the direct report of the person or caregiver dealing with what we were learning.
As the years go by and awareness grows, those of us who both work in the field of developmental disabilities and who also live in it has grown exponentially.
Have 14 extra minutes? Here is the TEDx Talk I gave a few years ago about the experience of living and working “in the field”.
I am always honored and humbled to speak to our future social workers, nurses, allied health professionals, teachers and physicians. As raw as it might be, I lean into authenticity even when it means I share my political leanings, mostly because those leanings have turned into shovings because my baby’s future is at stake all the time. He needs more than me and a bunch of warrior moms. We need front line people to understand and advocate too. My end goal in about an hour and half to impart all of the things books won’t tell them. What it is like to deal with broken systems, where I have gone to understand how those systems work and the qualities of professionals who have had the most impact in our lives.
I do not have all the answers, the knowledge or perspective. I only have my own.
After almost 16 years of parenthood and about 30 years of social services experience, I have compiled some resources from my personal helping library. My experience both personally and professionally have led me to seek out some pretty specific things. Here are some tips to keep in mind when attempting to gain an inside perspective or personal narrative in the world of resources:
Is there any research behind a method? If not, are they pretty clear about that?
Does the resource have any input from someone with a disability/caregiver?
Does the “helping” resource ensure the individual’s dignity while still helpful?
Does the resource claim to be the only or best way to do something?
Is the writer hypervigilent in any way? Are they constructive in their observations? Do they demonize or humiliate anyone while trying to educate? If they are negative, are they clear it is coming based on their own personal experience? Do they recognize any shortcomings?
**I have not been asked nor have I been compensated for adding any of these resources to this list. I am also not endorsing one resource over another
**This list is not exhaustive! Feel free to contact me with some of your favorites. I am always looking to add to my collection
WHAT ITS LIKE (Autism related)
Neurotribes: The Legacy of Autism and the Future of Neurodiversity (2015) by Steve Silberman
The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults(2015) By Temple Grandin
Schuyler’s Monster: A Father’s Journey with His Wordless Daughter(2009) By Robert Rummel-Hudson (Schuyler is not autistic, but has apraxia of speech)
Carly’s Voice: Breaking Through Autism(2012) By Arthur and Carly Fleischmann
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism(2016) By Naioki Higashida
Fall Down 7 Times Get Up 8: A Young Man’s Voice From the Silence of Autism (2017) By Naioki Higashida
Look Me in the Eye: My Life with Asperger’s (2008) By John Elder Robison
Ketchup is My Favorite Vegetable: A Family Grows Up with Autism (2015) By Liane Kupferberg Carter and Susan Senator
Thinking in Pictures (1995) By Temple Grandin
The Way I See It (2008) By Temple Grandin
Born On A Blue Day (2006) By Daniel Tammet
The Horse Boy (2009) By Rupert Isaacson
Chicken Soup for the Soul: Raising Kinds on the Spectrum(2013)
Aching Joy (2018) By Jason Hague
What We Love Most About Life: Answers from 150 Children Across the Autism Spectrum (2016) Complied by Chris Bonnello
This Is Asperger’s Syndrome (1999) By Brenda Smith Myles and Elisa Gagnon
What About Me? A Book By and For an Autism Sibling (2017) By Brennan and Mandy Farmer Illustrated by Emily Neff
The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction(1998) By Carol Stock Kranowitz
The Out-Of-Sync Child Has Fun (2003)
Disconnected Kids (2009) By Robert Melillo
Sensational Kids: Hope and Help for Children with Sensory Processing Disorder(2006) By Lucy Jane Miller
Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Integration Issues(2005) By Lindsey Biel and Nancy Peske
Interoception: The Eighth Sensory System (2015) By Kelly Mahler
Food Chaining (2007) By Cheri Fraker, Mark Fishbein, Sibyl Cox, Laura Walbert
The Incredible 5 Point Scale (2003) By Kari Dunn Buron and Mitzi Curtis
Exploring Feelings: Cognitive Behaviour Therapy to Manage Anxiety (2004) By Tony Attwood
The Explosive Child (2001) By Ross W. Greene
From Chaos To Calm ( 2001) By Janet E. Heininger and Sharon Weiss
Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns (2005)By Brenda Myles, Jack Southwick
Zones of Regulation: A curriculum designed to foster self-regulation and Emotional Control (2011) By Leah Kuypers
The Relaxation and Stress Reduction Workbook For Kids(2009) By Lawrence E. Shapiro and Robin Sprague
ADDRESSING SOCIAL DIFFERENCES
Thinking About You Thinking About Me: Teaching Perspective Taking and Social Thinking to Persons with Social Cognitive Learning Challanges, 2nd ed. (2007) Michelle Garcia Winner
The New Social Story Book2000 by Carol Gray
The Hidden Curriculum: For Understanding Unstated Rules in Social Situations for Adolescents and Young Adults(2013) by Brenda Smith Myles, Melissa L. Trautman, Ronda Schelvan
Navigating the Social World: A Curriculum for Individuals with Asperger’s Syndrome, High Functioing Autism and Related Disorders (2002) by Jeanette McAfee
Skillstreaming the Elementary School Child: New Strategies and Perspectives for Teaching Prosocial Skills (1997) By Ellen McGuinnis and Arnold Goldstein
ABA (Applied Behavior Analysis) :Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals (1996) Edited By Catherine Maurice, Gina Green and Stephen Luce
PEAK Relational Training System (2014-2018) By Mark Dixon
Bringing ABA to Home, School and Play (2012) By Pam Leach
VBA (Verbal Behavior Approach):The Verbal Behavior Appoach: How to Teach Children with Autism and Related Disorders (2007) By Mary Lynch Barbera
Floortime Approach/Greenspan Approach: The Child with Special Needs: Encouraging Intellectual and Emotional Growth(1998) By Stanley Greenspan, Serena Wieder
The Challenging Child: Understanding, Raising and Enjoying the Five “Difficult” Types of Children (1995) By Stanley Greenspan
Addressing the Challenging Behavior of CHildren with HIgh Functioning Autism/Asperger Syndrome in the Classroom: A Guide for Teachers and Parents (2002) By RebeccaMoyes
How to Teach Life Skills to Kids with Autism of Asperger’s(2010) By Jennifer McIlwee Myers
Taking Care of Myself: A Healthy Hygiene, Puberty and Personal Curriculum for Young People with Autism (2003) By Mary Wrobel
The Sixth Sense II (2002) By Carol Gray
Simple Strategies That Work:Helpful Hints for Educators (2006) By Brenda Smith Myles, Diane Adreon and Dena Gitlitz
ADDRESSING EXECUTIVE FUNCTIONING
Late, Lost and Unprepared (2008) By Joyce Cooper-Kahn and Laurie Dietzel
Taking Charge of ADHD (2005) By Russell Barkley
The ADHD Book of Lists (2003) By Sandra Rief
How to Reach and Teach ADD/ADHD Children (1995) By Sandra Rief
You Mean I’m Not Lazy, Stupid or Crazy?! (1993) By Kate Kelly and Peggy Ramundo
Driven To Distraction(1994) By Edward Hallowell and John Ratey
Organizing the Disorganized Child (2009) By Martin Kutscher and Marcella Moran
Ordinary Families, Special Children: A Systems Approach to Childhood Disability 3rd Ed (2007) By Milton Seligman and Rosalyn Benjamin Darling
From Emotions to Advocacy 14th Ed (2011) By Pete and Pam Wright
All About IEPs: Answers to Frequently Asked Questions About IEPs (2011) By Peter Wright
The Complete Guide to Autism Healthcare (2017) By Anita Lesko
Ethics for Behavior Analysts (2011) By Jon Bailey and Mary Burch
The Five Things We Cannot Change (2005) By David Richo
Getting to Yes: Negotiating Agreement Without Giving In (1981) By Roger Fisher and William Ury
The Only Negotiating Guide You’ll Ever Need (2003) By Peter B. Stark and Jane Flaherty
YOU TUBE CHANNELS
Admittedly, this is a newer realm for me! Contact me to add resources
Originally Published as The Tail Wagging the Dog 9/2015
Our dog is a bit of a sonofabitch.
He is playful and fun and sweet and well behaved.
Until he is not. And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog. The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone else’s beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred.
These times I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea of giving him back to the service dog agency. Wally came to us in a somewhat miraculous way. I relinquished the idea of a service dog for A2 years ago when I learned that an application was only the first step in a lengthy and costly fundraising and training endeavor–a cruel (but necessary)paradox for a middle class family supporting a child with a disability. So when I saw a post in a local Facebook mom’s group about this agency’s need for foster families for their breeding program it was a no brainer. He had been through an advanced training program, came with the bright orange “do not touch” vest (that as it turns out that as a whole people just ignore) and most importantly, neither of my children reeled away from him in fear of barking or jumping. I could get used to having to drive out to the agency on a moments notice for his doggie duty or the fact that as an intact male he has a certain “je ne sais quoi” that at times makes me feel uneasy explaining to groups of gathering and inquisitive elementary school kids.
While this dog is not trained specifically for A2, I had notions of things. Wonderful things. He would have the gumption of a sheepherding dog and rustle A2 back off to bed at night allowing all of us a full nights sleep. He would have Lassie-like receptive and expressive language skills to alert us if A2 wandered off…or fell in a well….or were lost in a canyon. He would be A2’s best friend and would play ball, endure endless tummy rubs and kiss away tears. But alas, Wally is not trained to endure colossal meltdowns or high pitched screaming and A2 is obsessed with Wally’s nails needing trimmed and is also wholly mortified by his noisy and explicit grooming habits.
It often feels more like they are roommates who met out of necessity on Craigslist.
We wanted Wally to be for A2, but really, we wanted him to be for us. We needed extra eyes, extra sleep and fuller hearts knowing A2 had a friend. But its not looking like this part was meant to be.
The surprise twist here is that I did not anticipate that Wally is here for A1. We didn’t see that one coming at all. I have watched A1 learn to use inflection in his voice to get him to follow a command or gain his attention. Wally’s presence is forcing A1 up out of his gaming chair to take him on walks or throw a ball or frisbee. He is quickly using perspective taking in a way I have never noticed in questions such as “Do you think Wally likes me? How can you tell?” or “Mom, I feel so bad. I wish I could give him some of my sandwich. Is this how you feel about me with my Celiac when other kids are eating gluten around me?”
My beautiful, slow to warm boy who would rather not touch or be touched is slowly but voluntarily petting, patting, feeding and cuddling Wally. Though it took me years to understand and accept that A1’s needs and worldview are just very different than mine, I have always known that forcing my motherly agenda would only reinforce his discomfort. And in a very rare moment–maybe the second time in his life just last night while watching TV he scooted closer to me on the couch, leaned in, and rested his head on my shoulder.
So Wally, you are off the hook. I will humble myself as I once again issue the world’s most awkward apology and assure the neighbors that we have no intentions of keeping their dog since you have clearly claimed him as your own just as long as you keep doing the stealthy, stellar job you were given to do here with us.
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.
Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A1 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.
I smiled within 30 seconds of arrival.My boy was flapping and waving with excitement to each bus. If given the opportunity, he would have run down the line to greet each one. Not the drivers, but the buses themselves as if they were fresh out of the stations of Sodor. Joyous in his innocence believing they each had their own personality. I saw him in a sea of adolescents, heads down, pushing past each other. Like the hustle and bustle of a subway train. Commuters with backpacks instead of briefcases. Shuffling, shuffling. Off to homework or tutors or practice for being the best at something since they were three. The commute to the next thing. He sees me and gallops with an outstretched hand. I am greeted with a smile. Always.
I smiled 5 times today. The instinct as a mother renders me helpless against noticing every single first-time. The same first times which beckon camcorders and cameras like the song of the siren and then whose passion slowly dissipates in the way the empty space between toothless grins are replaced by teeth yet too big for the spaces filled in. Our first times never end. Just more space between. My boy said his phone number out loud after years and years of practice. With no fanfare. He was just asked.
I smiled 5 times today. As I held up a wall, socially grinning and making deals with God. Chaperones milling about-clearing dishes, filling glasses- in a last attempt to seem as if they are helping while stealthy snaps from iPhones capture stealthy photos of their angels’ first dance. I am not a chaperone. They believe they are clipping gossamer wings for grounding by hiding in the shadows, but their swans are molting on their own and would snap at outstretched fingers offering bread if given the opportunity. Mine laughs heartily and offers a thumbs-up when he sees a raised phone in his direction.
I smile 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 joy and pride and I am no less embarrassed, no less ashamed, no less human for it either. And neither is he. I have won the emotional lottery. And because of that, sometimes I smile.
My child is an enigma leaving us to figure out what HIS autism means, what HIS cognitive deficits mean, what HIS communication disorder means. And there are times none of that matters at all. He traverses along his own path, one others his age were expected to leave behind long ago by both parents and peers. One lined with The Wiggles and goodnight kisses and “marching parades”. A path without expectation and never dissapating in private . And because of that, sometimes, I smile.
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 smile.
My boy wants to be part of the world. He navigates that weird and still uncharted middle school territory with explicit assistance. And when that help wanes, 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. I am front row witness to the rare kindness and unconditional love we may have all forgotten before we went mad in this world. All because my boy is just that worthy. And because of that, sometimes I smile.
My boy buoyantly flaps and hoots and repeats my name over and over and over in the space that should be the calm of my home. He also hops and beams and laughs when I walk away from my dishes, my reports, my vacuum when I cannot keep answering him from another room. He hops and throws his arms around my neck and kisses my forehead with a joy that is supposed to shed after our souls are deposited into these vessels given a name and a face. His love is like something from another place. And because of that, sometimes I smile.
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.
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
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.
I wrote this one year ago today. As all of our social media accounts have thinned the herd so to speak to show posts from people who are more like minded or we have all done so on our own, there are days I still feel the same. But as people reconsider the last year and perhaps have changed perspective, the divide has grown deeper with those who hang on to their belief systems as history and policy begins to unfold. Many of us have been spawned out into political action to protect ourselves and our interests….on “every side” and may have entered territory and conversations we never thought we could have. As I sit here contemplating my words from 365 days ago, there are days I feel the same about shutting everything down but I glad I did not. I spent a good deal of the summer researching , advocating and educating others on the dangers of removing healthcare policy and instituting new policy that would ultimately devastate the lives of the disabled and ultimately devastate the lives of everyone else too. I was able to talk about how Medicaid actually benefits everyone, even the individuals who never need to access it. My tiny social media reach may not ultimately be influential, but when considering the big picture and ensuring all voices are heard, it is hard to know what the ripple effect could be.
Does social media continue to be a huge time suck and anxiety generator in my world? Yes. But the advantage of influence, the scope of message and finding , connecting and forging new relationships took precedence. But let’s face it….we have all been there since adding a blue and white bird or letter F to the screens on our phones and I suppose we at least all have that in common…
My heart is sitting in a basket on my desk next to my computer. I stare at it wondering if I should leave it where it is or if I should shove it back in my throat where apparently it now belongs. I am faced with a dilemma I have fleetingly looked in the eye before but this time I pause much longer as if memorizing the outline of the face of a loved one I may not see again.
I love Facebook. I am like a Pavlovian dog when I hear that DING! and will switch over from work to see whats going on my feed. Facebook is the most existentially layered version of the real world I can imagine. Everyone from my closest friends to those folks who have crossed paths with me for a brief yet meaningful time are there. It’s the place where my elementary school…
Anyone have a ________who works well with special needs kids?
—every special needs parent on every local special needs Facebook page
Last year was the first time in A2’s entire life he got through a dentist appointment relatively unscathed. Sure, at first he flapped and screamed and excreted that sweat stench he does as if he is a sea slug attempting to keep predators away, but ultimately Dr. Nate (not his real name)prevailed with him in the most awesome way. A2 received the first x-rays of his entire life, full dental exam featuring the scrap-y, spinn-y and spitt-y things and actually left the office smiling.
That is the thing with ALL kids on the spectrum. Once you crack the code on how to navigate around or through the anxiety, things tend to go a bit better.
Conversely, the same is true. Once you REAAALLLY approach something wrong, the damage is done and it is going to take a hell of a lot to bounce back from armageddon levels of panic.
Apparently, Dr. Nate and his swoon-worthy dental practices on my autistic kid made more of an impression on me than we did on him because he didn’t remember his approach from a year ago. At our visit today, A2 was visibly panicking/attempting to act cool and Dr. Nate was taking a more gentle and cautious approach. In a red carpet level performance, I loudly proclaimed I was going to the bathroom (office visits tend to go better when I am out of eye shot). Without skipping a beat, Dr. Nate said “Sounds good. I’m going to take a look here at A2’s teeth, but you’ll be right back…So…everything is OK.”
Of course, I was standing right outside of the exam room door and I could hear him firmly reassuring my kiddo. I peeked in to see A2 standing in the corner with a toothbrush and the toothpaste from home and the dentist mopping up his face with gauze. When all was said and done, Dr. Nate said to me, “Can you come back in three months? I think one lesson we learned is it’s best for mom to wait outside. I think next time, I will use a firmer, more direct approach, It seems to work best with A2.”
I thanked him profusely for his insight and patience. He replied “Every kid responds to something different and sometimes even from visit to visit.”
Every kid responds to something different. Even from visit to visit.
Yes, Dr. Nate. You just summarized precisely how to to work with autistic patients. They are all individuals with individual needs and you must be aware of this at every visit. And then you meet them where the are.
Pretty much just like everyone else.
While we are at it….a shout out to all the other doctors in our lives who got it too:
To the orthotist who met us in the back of our van for years in order to cast A2’s feet for braces
To the physical medicine doctor who immediately started using sign language while she talked to A2 when she realized he might not understand her words
To the hospital nurse who spoke directly to A2 to ask him his name, age and where he went to school instead of asking me right in front of him.
Medical anxiety is a serious issue for many autistic individuals. The sensory assault, the inability to clearly communicate and the fear of not understanding what comes next can be overwhelming to both the patient and caregiver. We recently had a specialist appointment where A2 was tearful and fearful. It was suggested we could move forward with the visit in one of two ways. 1. I could hold my 12 year old down by myself in my lap or 2. the doctor and two office staff could bum rush him and they could hold him down on the floor.
I wondered out loud what it would be like if while we were standing there talking and out of nowhere two men twice my size came around the corner and held me down while a third approached me and I wasn’t sure what he was going to do. Boy oh boy….if I wasn’t worried about talking in the hall before, I sure would be from here on out!!
It may seem odd to many of us that a doctor’s office would not be equipped to handle their growing clientele of autistic patients, but really, physicians have a limited amount of time to spend with their patients and many of them have absolutely no specific training in disability. As parents, we take it upon ourselves to make certain we take all the precautions with all the details and do all the educating so an office visit goes as smoothly as possible.
Doctors. Take your lead from Dr. Nate. His approach holds the key to your best success with every one of your patients. Remember they are human, figure out what they need on any given day and then do THAT. Us moms will take care of the rest…..