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.
There 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…
Many years ago, one of our first home providers was working with another family who had an older teenager. The provider and the client were only a couple years apart in age. (Don’t worry, -the provider maintained confidentiality the whole time!).
One day, I asked what kinds of things she did in her job with the client, to which she answered,
“Mostly, I help her do chores. There. Are. So. Many.“
Given A2 was only about 4 years old at the time, I was simply curious about what life at home with a teenager with a disability would look like without actually considering what life with MY kid as a teenager would look like. We didn’t know our own long and winding road at that point, of course my child would have chores! Didn’t the provider have chores? (As it turns out, possibly not, since knowing far more teenagers now that my kids are teenagers themselves–this parenting philosophy I have might be a bit of a new millennial enigma.)
What happens if a teenager doesn’t have tons of independent leisure skills and has difficulty with self-direction? Do we still teach them how to play with toys? No. If they have not enjoyed this activity as a younger child, then probably not.
Do we leave them alone to wander the house with their iPad? Well…yeah…admittedly sometimes. Especially if they enjoy doing that.
Do we plan on living forever to take care of ALL their needs?Yes, yes we do, but until we figure out an actual way to do that, that is not an option.
The most basic of basic skills must be taught to A2 in an explicit manner. He learns all sorts of things, just like everyone else, but at a snails pace. By not teaching him how to care for his surroundings and belongings, I would be stealing from his adulthood to bank roll a leisurely adolescence. Those processes start NOW so he has a chance for a modicum of independence, the ability to have options and choices and self-determination as an adult. Learning to fold a washcloth may take a typical child 20 minutes to learn and an hour to master. The same washcloth skill might take a year to learn and 3 years to master. Really.
At 14 years old, he is in his evening of the day–the last leg of time being on his side before he is an adult.
A schedule that includes daily expectations gives A2 a sense of peace because he understands how his time will be filled. This summer, with a skeleton crew of help, Momma has been on the case to level up on these skills, scaffold independence and watch him enjoy and take pride in these “activities”. He verbally perseverates less. He comes to me beaming and says things like “Wook! Do it all by yourself!” as he surprises me with a made bed or silverware put in the proper drawers. He is generally, well….happier with chores.
Chores a narrative of dignity and self determination.
Caring for our surroundings gives us a sense of control, a sense of ownership, a sense of responsibility and yes, ultimately a sense of community. If he has to do his chores just like everyone else in the house (ok…maybe not just like everyone else…he actually does his much better many times than his brother!!), I am sending him the message, “You matter as much as your brother and are an equal member of this family” and I am showing his brother equity and fairness by saying, “We are all capable of contributing in the ways we can to this household–A2 is no different”.
I am not a mean mom (most of the time). I like to think of myself as the same kind of mom who makes her sick kid take icky medicine when he doesn’t want to, knowing it will make him feel much better. Not giving the medication makes me feel better because it is easier and I don’t have to see him cry. At least in the moment.
Chores are a pain in the butt. I DEFINITELY have chores I will still whine through, procrastinate doing or forgo altogether. While being an extremely Type A personality and capable of high levels of organization, I am also extremely messy and it happens FAST! I do remember how this unfortunate dichotomy affected college room mates, though at the time, I absolutely did not see the impact. I had to learn that the hard way.
One of my current chores is digging up the patience and consistency to make sure I am teaching A2 how to put his plate in the sink, start his laundry, or wipe down the counter. These tasks are the insurance plan for a future that probably will not include me. As scary as that is to consider, I certainly hope one day it is because he looks at me and in the most apraxic adult way possible says,
“Mom, I don’t want to live with you and Dad anymore. Don’t worry, I have already cleaned up my room and packed my suitcase.”
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!
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.
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.
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
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.
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.
**Originally posted New Year’s Day 2016. The last 2 years have been harbingers of change, both good and not so good both as special needs families and also as citizens of the US. Every few months, I come up for air to advocate, teach and discuss some uncomfortable truths only to slip quietly under the water again to peacefully watch my children’s lives pass before my eyes. The future looks a bit bleak for those of us who can see retirement years on the horizon at the exact same time our disabled children “age out” of the system and also our parents are elderly enough to run out whatever savings they might have. It is too hard to dance freely on the rails without worrying about the oncoming future barreling down like a freight train. Perspective is always an odd thing, especially in retrospect. I wish all of you the freedom of worry and the ability for mindfulness in the coming year.
A few weeks ago I was stuck in traffic. Albeit Midwest traffic, but a standstill is a standstill. A1 was incensed in the same way any curmudgeonly old man dealing with road lock might with a loud “C’Mon!!!” and a quivering fist in the air. Except he is a 6th grader who was going to be late for religious school. And he has never personally navigated traffic of any kind. I calmly explained to him that sometimes life is quirky. Had we left 15 minutes earlier we might be part of the accident slowing everything down. Or maybe by showing up 15 minutes late he might miss the most boring part of class. For all we know inconvenience is a blessing in disguise.
For all we know.
Netflix is showing the movie Sliding Doors this month (and serendipitously also showing Serendipity, a way more palatable existential rom-com). Gwenneth Paltrow’s life splits off into parallel simultaneous existences based on minor differences in circumstance that alter the outcome of her immediate future.
Ultimately, three things are revealed:
#1The event that changed everything was out of her control, seemingly extraneous and unnoticed by her
#2. Everything that happens happens in parallels whether she is part of it or not
#3. The outcome somehow is going to be the same regardless of the path.
I showed this movie to A1 to drive a concrete point home in the spirit of control and lack there of. I have this funny thing with the idea of omnipotence and omniscience at the same time–a notion that seems cruel to those of us whose minds cannot conform in that manner no matter how much salvation sounds like a cozy deity-down comforter everyone else can snuggle in. It means people like A1 and me are damned from the start because we just CAN’T …and it was planned it that way. Like being forced as a child to hug and kiss a relative even when that relative knows it makes you uncomfortable to do so. All in the name of making that relative feel warm and special. Except what kind of weirdo feels all the good feels by making a child squish their body against theirs against their will? That is why I show Netflix movies to my kid instead of reading parables. I’d rather he believe that people just think he has bad taste in movies than that his life and choices are meaningless and filled with anxiety because his synapses don’t fire in a way that will ultimately please an all knowing being who made him that way. We cannot help thinking about how our moments might be affecting an unknown future.
A2 operates differently. These things do not need to be explained to him because he is only in the present. I am happy because Daddy is here NOW. I am not happy because I want Daddy here NOW. NOW I am happy and screw Daddy because we are on our way to Chuck E. Cheeses. If all is no worse than status quo, then optimism and hope are not necessary if you are only worried about right now. It really isn’t until someone introduces you to unrealized expectations or well conditioned responses that you develop a sense of disappointment, dashed hopes and anxiety of an unknown future.
In recent years A2 has also taken to obsessively asking “what is the time?” and watching any clock either as if it is a piece of art to be analyzed and admired or else as if at any time it might fly off the wall and attack him like the starlings from The Birds. His authenticity and ability for stopping and acknowledging the moment in the the moment, realizing there will be a new moment soon is a gift.
As we stand on these tracks together I think about how Autism has robbed A2 of a regular childhood but probably not because he views it that way but because I do. There is a lot of track already behind him but there is much more ahead and I strain to see the horizon in case a train comes barreling down the tracks…because at some point there will be a train. And there is nothing I can do to stop that. However, A2 only looks at the rails beneath his feet being careful not to trip and he only looks back to look at me. If he were to hear the distant whistle, I am sure he would simply step off the track in that moment so he could watch the train go by. Because my focus is on the horizons while stumbling down the rails, I run the risk of getting my foot stuck between the slats and then panicking thinking about the possibility of the oncoming engine. I am hoping that in 2016 I can continue learning from A2 as I struggle with the concept of mindfulness, especially when the moment seems bleak. I hope for the ability to recognize each moment as unique and not as good or bad and that I can cherish the people and things that are important to me regardless of how time seems to be treating us in the moment.
I just need to remember to point to my wrist and ask “what is the time?” and know that it will be different soon.
My brother and I were sitting on the couch chatting about politics last winter when I showed him a segment from the Daily Show. It was a humor bit about calling a Wyoming elementary school to find out if they had a gun in the event of grizzlies. There was a laugh track and a brief photo of a gun, so it was odd to me when A2 gasped loudly, stood up from the couch waving his hands and both tearfully and fearfully begging, “No gun! No! Shoot, no!”
We are not hunters nor are we gun enthusiasts and neither are my friends. As far as I know, A2 has never seen a gun in person or on TV, given 100% of his viewing includes Barney, The Wiggles and NBA. He has never heard a gun shot. Neither he nor his brother ever pretended things were guns. He has been known to blow some zombie pirates away gleefully at Chuck E. Cheese, but those are not even guns.
I reached for him to comfort. He pulled away and continued to plead “no!”
A2’s language disorder renders him without the ability to elaborate and his anxiety rendered him without the ability to say much of anything as he stifled tears. I was perplexed.
The next time I saw his Intervention Specialist, I asked her how they handle lock down at school since I grew up when there were only tornado or fire drills. I literally have no concept of what they do. She informed me they tell the kids it is in case there is someone in the school who should not be. No mentions of guns or lack of personal safety, she assured me.
Fast forward one month.
While visiting my mother out of town, A2 was playing in the bathtub when suddenly he became very quiet. After staring off for a few moments, he pointed and gasped ” No. Shoot. No. Boom!” I tried to follow his gaze, when I saw this….
Apparently, the item of concern was the bottom of an electric toothbrush and he would not get out of the tub until I removed it from the bathroom.
My child who has no experience with violence or guns knows what a gun barrel pointing in his direction looks like. He knows he should be afraid. And he clearly was now on two very different occasions.
I HAVE NO IDEA WHY.
He is never, ever alone with an adult we don’t know well, generally not even family. His aides are almost always supervised.
There is only one place it is possible. This meant we would have to question the people at the place he spends the most time and we are to have the most trust. The ONLY place where he has potential to be alone with adults without us.
How in the world does one even go about doing that without placing the teachers, therapists and paraprofessionals in a position of not only defensiveness, but of questioning your motives or your sanity as a parent. A2 went 11 years with no mention of guns let alone a knowledge and fear of them. We had no other option than to ask because we don’t have the option of taking anything for granted in our world.
What is the worst case scenario you can imagine for your own child?
Those of us with anxious personalities can come up with a bevy of outrageous ideas when it comes to our child’s safety. However, let me assure you, when you have a child who cannot tell you anything while paired with the knowledge they will likely outlive you, you don’t have to have to be Type A, neurotic, high-maintenance, helicopter or any other of the words that may be assigned to you behind a closed lounge door by people who don’t truly understand the fears of every single parent of a child with a disability. We send our kids out into the world as a leap of faith in their teachers, therapists and caregivers. And we also have no choice but to accept whatever the answers are when they have nothing solid to give us in moments like this.
I have worried about many things throughout A2’s life, but gun violence/gun safety has been super low on the list of worries that keep me up at night. (Let that one sink in for a minute….). Almost more so than my frenzied concern over where A2 might have gained this new-found awareness was my sadness in knowing something stole a level of innocence from his blissful naivite about how the world works. We don’t have difficult discussions in the way my friends do with their children when they show up wide-eyed and fearful about confusing and upsetting events of the world around us. So many things that we as adults keep our fingers crossed behind our backs as we reassure them they are safe, hoping with all our souls we are right. I have assumed because A2 has not seen hurricane devastation up close and personal, cannot conceptualize a mushroom cloud and has never seen an automatic weapon mow down 500 people while enjoying themselves at a concert that he does not contemplate or worry about his own safety in these ways. That the things that fill his iPad with cartoon characters and songs about fruit salad are all he should worry about. Man alive…I am pretty sure I was wrong. Maybe the belief this is true is to protect my psyche, not his.
I have to take my best guesses as far as what my child does and doesn’t understand about the world. I also have to take my best guesses as to how he is affected by those things. It’s not wrong for me to shelter my tween from guns. For us, there is no meaningful teaching of gun safety or exposure that doesn’t end in a loop of doing it wrong somehow. The stern warning of “STOP! DON’T TOUCH! LEAVE THE AREA! GET AN ADULT!” is a useless four-step command since my child can only follow a two-step with any regularity. He certainly doesn’t have the fine motor skills to learn the power and healthy respect a gun commands under adult supervision at the shooting range.
So according to the professionals, my non-dangerously-mentally-ill kid (who does not have an aggressive or hateful bone in his body) who can technically have a gun just like everyone else when he is 18, can’t be taught how to handle it carefully, how to shoot it or when to use it, yet I am to expose him to firearms in a way that won’t frighten him and also so he knows they are not toys and won’t pick them up. I would very much like the manual on how to do that.
There are 300 million guns in the US. It sounds like my child has seen one of them in a way that caused him a great deal of upset and anxiety and how that happened will likely always remain a mystery. We have dulled our senses and turned down the volume on what we are willing to accept as normal here. And this uncomfortable truth will eventually spill over onto my beautiful boy who can never tell me what happened.
My home phone rang the other day right before my kids got home from school.
For those of you who do not know what I mean by “home phone”, its that thing that plugs into a wall and has the # symbol that cannot hashtag anything. When the home phone rings, I typically keep doing whatever I am doing unless I am feeling a bit of whimsy to torment . The only other time it rings is when someone at the school does not know to call my cell–which often then strikes fear in my heart. So I picked up.
It was A1’s new science teacher calling to say, “First of all….let me tell you I think he is hilarious. He made this cartoon strip ….”
He then went on to disclose all the other things drenched in awesomeness while I was waiting for the “Second of all….” part. That part never came.
He called me to tell me I had a cool kid. And that was it.
I am already too experienced with the school system to be naive. That same morning I had to send an email to kindly remind another teacher to carefully review A1’s IEP and Health Plan as there were some important things not being followed. Coincidence to hear from the science teacher the same day? Probably not. I am guessing he may have just been reminded that he had a kid in his 4th period class who has an IEP and a Health Plan. Maybe not, but as I suggested being doe-eyed does not work as well with crows feet.
Unfortunately, what struck me most about this amazing phone call is that in the 3 years that my younger child has been in public school–my very speech impaired child–I have never ONCE received a phone call from a regular ed teacher just to tell me about his day in their class. There are two things you need to know:
1. He tries to tell me about his day. Every day. And without context, we cannot understand what he is trying to tell us.
2. I have ASKED for this type of communication from regular ed. Over and over. Every year. In front of other people. To almost no avail.
So, regular education teachers, this advice is completely free of charge. The key to keeping us special ed parents at bay.
1. CONTACT US FIRST: Before school even starts, call to introduce yourself and ask about our kid. Give us your contact information. Assure us you are the extra eyes and ears for a kid who has no voice.
2. DON’T ASSUME THE INTERVENTION SPECIALIST IS JUST TELLING US EVERYTHING. My kid has a whole 30-60 minutes a day of direct intervention specialist time required in his IEP in our high-end-award-winning-district. My severely learning disabled child with a severe speech disorder. The paraprofessionals who are with him most of the day are not permitted to communicate with me directly due to their classified employee status. We often get second hand info from our IS that sounds something like “had a great time in music class learning new songs” likely because that is all SHE gets told. The small tidbits we do get…well, that’s ALL we get to know. The nuances are never there for us. We don’t get to hear if they are making a new friend, if someone hurt their feelings, or if they liked something they learned about. And those things are definitely happening in my child’s world. No matter how hard he may try to share those things with me, if I have no context, I will not know at all what he is telling me let alone what questions to ask. The paras also are not allowed to attend IEP meetings even at my request. Were you aware of any of that? A2’s Intervention Specialist has 10 kids who can’t tell their parents anything about their day.
She is ALL of their voices….and she is trying very hard to be all knowing by being the 3rd party communicator. But why?
This is a team approach. While you do have 25 kids in your room, if they are lucky and have parents who actually ask them about their day, their kids can tell them. You have so much you can tell us and I guarantee all of us want to know.
3. INVITE US IN: To volunteer, to be a fly on the wall, to talk about our kids to your class. Did you know that neither you nor any of his other caregivers during the day are allowed to divulge any information regarding our child’s diagnoses to the other children due to HIPAA**? And there are SO many questions from children aren’t there? If you have an inclusive classroom, the information a parent can provide the children can be invaluable to the inclusive environment. Offer to include the IS to help that parent if they express interest but are uncomfortable.
**IMPORTANT DISTINCTION: FERPA (Family Educational Rights and Privacy Act) any information that is directory information is ok to give out. So If a parent is asking for another child’s last name or to get in touch with another family, that is not confidential information if the family did not opt out of directory information. You just can’t tell us the child is on an IEP or anything regarding diagnosis.
4. RECOGNIZE WE UNDERSTAND YOU ARE BUSY: We are not to have a “gotcha” moment. I cannot imagine being a teacher right now. Huge classloads, jobs dependent upon test scores that are dependent on more than just your ability, differentiated instruction, outliers flying under the radar, helicopter parents, uninvolved parents. A 10 minute phone call once a month to tell us something we wouldn’t know without your call us huge for us. If you do that once a month without fail you will likely rarely hear from us. But your principal will almost definitely hear from us. To hear how awesome you are.
5. INCLUSION AND INTEGRATION ARE DIFFERENT: This doesn’t mean let a special ed kid also have a desk and have peers help him hang up his backpack (though we recognize the value in that too). I mean if you take a picture of our kids to put on a bulletin board, make sure it is a good one like everyone else. If you are reading to the class and you ask a question the other kids can answer, figure out a way to ask a question that could include our kids’ ability to answer. While you have kids who can fall through the cracks, ours have absolutely no way to mountain climb out of those crevices without you. I am sure like us you don’t want them just to be a warm body at another desk. Ask their IS for strategies–that is why they are there.
BONUS #6 also at no charge: THE MOST DIFFICULT PARENTS ARE LIKELY YOUR BIGGEST ALLIES: Yep. We are the wave makers, the getter-doners. We figure out what you want and need and we try to get it for you especially if it will benefit our kids. Sometimes you don’t even need to tell us what that is. We figure it out. Assume nothing regarding our motivations.
For those of you who went into regular education vs. special education–those days are long gone. Inclusion is not just the responsibility of your Intervention Specialists. Much like us parents of kids with special needs…we started out in the exact same place as all the other parents in your room. Maybe even as you did too as a parent. Our journey veered off years ago but the desire to get to know the same thing we would have if everything turned out as expected has not.