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 Book 2000 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
BLOGS/SOCIAL MEDIA I LIKE
Disability Advocacy and General Info
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.
Ok. Emily can only take credit for only part of this….
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
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
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
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…
This was originally posted last year in honor of A-Z Autism Awareness Month. Thought I would share thoughts, gratitude and realities here this Teacher Appreciation Week
Originally published 4/27/17
T is for Teachers and Therapists
112. A2 has had a total of 112 different teachers and therapists in his short 11 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published, lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 105,000 hours on this planet. Some were stellar, life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have…
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I am beginning to find there is an inverse correlation between the age of your child and your hope for their success in this world. No, don’t get me wrong, I have immense hope and belief in my child. But as I stand back and watch and listen as three years have passed since I wrote this piece, I realize the complicated nature of being his mother. The balance of that firm belief and the amount of time, energy and consistency only a mother will do. The balance of dignity, both his and mine in order to help a world see him as I do. And that balance of watching the world place barriers and shame when it doesn’t have to all in the name of ego and it being just a little too much for a mother stand front row witness to over and over and over again. I wish it were different-I am trying and so is he, but for different reasons. Y is for Youth.
(originally published April 2015)
The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy. I would imagine it’s the bittersweet joy of having children, watching the transformation from innocent angels to inhabitants of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!” I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2…
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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:
- Picture a city with 20,000 streets.
- Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
- Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
- (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.
In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.