For the last decade, A2 ages while his aides do not. Time stands still as they enter our lives at 20 and exit at 22 again and again and again. All the while, A2 ‘s clock continues to tick away putting him closer in age to the next new soon-to-be-best-friend to come on board. He is still little and adorable and fun loving, but a teenager nevertheless. A teenager with care needs that are still very much in line with what they were when our very first 20 year old walked through the front door.
Each year that passes, A2 is more acutely aware and uncomfortable with this fact on a few levels, which in turn makes me uncomfortable with the skeleton crew of potential candidates I must independently identify, recruit, interview and hire folks with little to no experience with Autism. Every year I wonder if I should just provide all of his care and community support myself. I have been faced with this challenge for a year here and there at a time while also trying to find balance with my work schedule. In the long run, that is actually far less stressful and overwhelming (albeit, unpaid) than the Groundhog Day treadmill year after year of the anxiety of locating the right person,the training, the supervision, the getting over the behavioral hump, the getting used to having a stranger in our home and trusting they keep our personal life confidential/my child safe-always and no matter what, and the anticipation over A2 ‘s grief and lack of ability to process that with us when they leave our world.
And then I remember.
I remember the laughter and energy and patience for a boy who deserves nothing less on days when my own dark places pull those things under the blanket with me.
I remember new words and habits and skills that I know I didn’t teach.
I remember roller coaster riding and sledding and jumping into cold pools-things I wouldn’t dream of trying with him (or without him, actually)
I remember relief watching a young A1 be welcomed in to play, given the same attention and love by those who saw that he was here too and just as worthy of the special time his brother deserved, even though no one specifically told them to do so.
I remember birthday presents, phone calls and gifts, just because. I remember off the clock offers of babysitting just to give me and Mr. ATeam a date after not having one for over a year.
I remember A2’s uncanny ability to sense the unspoken leave-at-the-door moments that would go past my radar until I saw his care and loving behaviors.
I remember the phone calls from new professionals telling me about a challenge they faced in their new career they knew how to handle from what they learned working with us
I remember my beautiful boy has no people who know his life inside and out, backward and forward other than me and his dad. With exception of the select few who come here to work under a supervisor who often forgets to show a soft side or appreciation and yet they choose to stay here for a year or longer.
I find I am just as appreciative of this village we create year after year as I was in 2015. It looks different today. I am more tired, less patient with the learning curve and more concerned about the days and years ahead since I now have the wisdom of just how fleeting they are as we barrel toward the thing-that-keeps-me-up-at-night. However, I have had the opportunity to see the future of these college co-eds who come in and out of our life in the blink of an eye. I know special education teachers, speech and language pathologists, occupational therapists, RNs, Psychologists, Social Workers, Disability Advocates, Trauma specialists, Physicians. I see mothers and wives. I see women who seamlessly moved to their next stage in life from A2 better equipped to understand what Autism looks like from the inside and hope it has helped fast track their perspectives as helpers
I sure know that if that is true, A2’s purpose is far greater than I could have ever imagined and I just know if he understands that, it would only contribute to the joy he has for the things we all take for granted.
A is for Aides: 2015 Autism Awareness Month
Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.
Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A2 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.
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
HELPFUL BOOKS
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
ADDRESSING SENSORY/REGULATION
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
ADDRESSING BEHAVIORS/LEARNING
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
HELPING/ADVOCACY/COPING
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
Until it is hunted, killed, braised, barbecued and eaten.
–Emily Dickinson
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)
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.
There is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it, it doesn’t:
1. Spontaneously burst into flames
2. Disappear
3. Take care of itself.
It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog, except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I rationally know there is likely nothing in that envelope that should really cause this kind of response. But that’s the thing with phobias or irrational fears and trauma response.
Yes…I said trauma response.
Often times prior experience attaches itself to something innocuous and we then pair our previous response with a neutral stimuli and generalize it over time. Caller ID with the school prefix, email and now apparently manila envelopes have become the manifestation of years of battles, blockades and having my already fledgling parental competency called to the carpet.
For me….my defining moment were words uttered in a meeting 7 years in….but 3 years ago: “Its not fair for one (A2) to get more just because of your parental advocacy” (which was agreeable…but in a whole different way given we were discussing data collection that was reportedly correct, not collected by me…and concerning).
It is silly I suppose if you are the one who stuffed the envelope and have no knowledge of my defining moment or my other, more academically impaired child. She certainly must be wondering about the warning likely issued by the elementary school about my hypervigilance, because the experience she is having is the opposite. A parent who is late to answer emails yet bizarrely will parse apart data collection in an IEP meeting….and be spot on why it was taken incorrectly must mess with her own schema of special needs parents. I have learned to become a very hands-off parent in hopes of preserving my own life in the last year. I have a double-decker weekly pill case that houses my capsules of life extending medications that would impress most of the AARP crowd. Yet I am not yet even 50. Years of sleep deprivation and external stress can only wear so long in a genetic cesspool.
So there it sits….but not without words. It screams to me every day over the din of my responsibilities. But I am strong and I can withstand long term, unfocused wailing.
So I leave you with 3 truths….
A. I am human.
B. I love my child more than anything I could have ever imagined.
C. I am preparing for an uncertain future in a time that I will no longer be here to advocate in a world that does not see my child as perfect as I do.
…and there are things that get in the way of of the co-existence of Notions A, B and C.
About a week or so before I turned 32 I realized exactly how selfish I was and just how little impact I had but at the time I kept that to myself. For many years I thought it possible I could one day be a leader. However, my cherubic cheeks, diminutive size, my damaged ego strength and my faulty frontal lobe betrayed me every single time. I was a cartoon character. An adult who looked and seemed like a child in every way. Even while playing grown up in my power suits and single karat ring, the truth was I worked in state funded nursing facilities selling hopes of a dignified death to desperate families. And they believed me because there was a level I understood vulnerability and how to soothe it as only a broken lady-child can.
On this particular September morning I whipped into the parking lot just like I did every morning at about 8:45am. It gave me just enough time to put my mascara on in my rear view mirror and dash across the street to the nursing home to get to my daily 9:00am. As I dabbed the black goo onto my lower lashes, the goofy morning team people were on that local station and broke in to Foo Fighters to let everyone know that some bone head flew their plane too low to clear one of the Twin Towers in Manahattan and crashed right into it. I shook my head and sighed as I twisted the brush back into its cocoon of gel and wondered if ANY adults knew what they were doing. It was a beautiful day in the Midwest, though I am biased to any September day regardless of the conditions. There is something about the promise of autumn as the slow and beautiful evolution into winter that is tangible visually, by smell, by temperature–such a visceral descent on all the senses toward the bleak and desolate blanket of cold and slush. Or perhaps I just appreciate when all good things must come to an end. As the radio duo blathered on, my assumption was that the plane was a small, single engine private jet that clipped the side of the building because the pilot couldn’t find a Starbucks before takeoff. It was worth being late to my meeting to see how this one was going to turn out, so I pulled out my makeup bag to put on the rest of my face.
At just after 9:00am, as I was thinking about cutting the engine, one of the DJs interrupted the other and there was an awkward silence for just a moment…just long enough that it caught my attention and I did not turn off my engine.
“Another plane just hit the 2nd tower. I don’t understand what’s happening.” And neither did I. And neither did the rest of America.
I sat in my car and for the next 20 minutes listened intently to verbal chaos.
I walked through the day room where there were two TVs on different stations but both were playing the same footage over and over. There was no single engine private plane losing the edge of a wing. There was a commercial jet filled with regular people, that tore into the middle of the North Tower and immediately turned to smoke. People on a Tuesday morning, many of which who were also on their way to their next morning meeting. Though there was still no explanation, if you stood long enough to watch all 17 minutes of footage there were certain things you knew you could probably rule out.
“Becky….Becky…can you turn this crap off and put on my shows?” Poor Pearl. She said my name with such certainty and yet my name is not Becky and there were no shows to put on this morning. My heart leaped and sank at the same time as Pearl’s spindly fingers wrapped around my hand. Her wedding bands spun lopsided on her thin ring finger and the diamond dug into my palm. She would never contemplate what just happened and likely 10 minutes from now would not even remember sitting and watching the thousands of sacrificed souls who would forever change history in our country. I wondered if this is what dementia must be like. I stood there watching this tragedy unfold in footage so telling, so horrifying that even after it was over, it wasn’t over as the smoke poured out of each building as if they were chimneys. Papers and ashes fluttered and floated to the ground like the first snow while bodies surreal while airborne sank as if tied to anchors at the bottom of the sea. Footage of chaotic and confused armies of identical living dead covered in head to toe gray soot were wandering trying to find a foxhole that did not exist. Camera crews live filmed authoritative sounding officers standing in the lobby and strategizing their plan. Community servants looking for leadership while nodding heads with axes raised and probably breathing the same sigh of hope I was that there were people who knew what they were doing and there would be an end of the day soon. But then came the first BANG. loud enough that it was audible on the crappy 20 inch TV. The workers stopped talking and looked around.
And then there it was again BANG. And again. I remember none of them moved or spoke a word but they looked to each other silently, uncomfortably. It was that pause that made me know exactly what was falling to the ground over and over outside of those lobby windows.
They went back to talking about how to safely evacuate the higher floors with less authority and I was overcome with that same stillness. And just when I had reconciled the first image of the planes crashing and exploding as the least shocking, it was shown again. Those of us who were not afflicted with dementia or a failing memory felt like we were seeing it again for the first time because now it couldn’t be confused with a bad action film that needed to be changed over to the Price is Right. Now we had an idea of what came after as those recordings from ground zero became reality and unfurled into the collapse of the towers rather than a cut to the harried phone dispatcher who is also try to keep concerned citizens out of the red faced fire chief’s office.
And then life went on.
I had a meeting the very next day with a former employer who wanted to me to come back to them and pay my tuition for graduate school which started the following week. I spoke nothing of 9/11 again. An old colleague was sitting at her desk and I waved to her smiling. She and her husband were important political figures in my city and I can only imagine what went through her mind as I bounced away seemingly oblivious to our hearts in our throats. I didn’t even ask about her son who lived right across the Hudson River. But see…that was the thing. I thought no one knew how to act because I didn’t. It still was far enough away that we could all go on like normalish. I was aware enough to know other parts of the world were much more quietly dealing with genocides and bombings and terror every single day. To assume that American lives are so much more valuable as compared to the rest of the world made me feel conflicted and I wasn’t sure what to do with that even though no one was comparing. I was newly married, had a new job on the horizon and was two years out from a new future and I didn’t want to think about what it meant to have an invisible enemy who could turn my vacation flight into an act of war.
And that is what I told myself.
And then life went on. And eventually it did for everyone else too.
Life wondering exactly how a loved one died or if maybe they would show up some day. Life fearful of invisible people who ‘hate freedom’ and creating terrorists out of neighbors and seatmates in our minds. Life of conspiracy theories about government far beyond just the tinfoil hat people. Life of knowing just how good people can be to one another. Life of knowing just how horrible people can be to one another. And life went on.
This tower is 4 years total of educational paper work for 2 kids and represents approximately over 300 hours of meetings, evaluations, reading and combing over data….JUST AS THE PARENT
(originally posted 9/2016)
I is for IEP, IDEA and Inclusion.
These three “I” words have forever changed me as a person.
If you have a child in special education, you probably just had a shiver run down your spine just by reading those acronyms in print and may be thinking the same thing. All of these things serve as a blessing and a curse to our kids and also to the educators and administration serving them. Back in the day, the Individuals with Disability Act (IDEA) was enacted to refine and replace what few laws there were to protect children with disabilities within the education system. It was meant to also focus more on the individual rather than on the disability itself. IDEA has been re-written several times since 1990. There are several things it does both in a good way and also in not such a good way:
FAPE: It provides a free and appropriate public education to all kids regardless of disability at public expense. The key word here being APPROPRIATE. The downside: There is a pretty decent chance that what you and your child’s test scores say and what you know is appropriate will be very different than what the district thinks is appropriate. And most likely because of that other key word….FREE.
EVALUATIONS: This law makes sure children with disabilities are evaluated in a way that makes sense. We don’t want to use one specific test to decide if a child needs special education services. Not only is discrimination prevented, ideally these evaluations serve as a tool to know exactly what they will need educationally. The downside: Evaluations are only as good as the people trained to administer them and only as good as the educator who can recognize an issue in the first place.
Individualized Education Program (IEP): These are legal documents that establish goals, accommodations and modifications to the general curriculum and access to qualified professionals to ensure a child with a disability is learning at the right pace and to his ability within their environment. These plans level the educational playing field for those with a disability. The heart of special education. There are 13 categories under which a child may qualify: specific learning disability, speech and language impairment, blindness, deafness, hearing impairment, visual impairment, orthopedic impairment, traumatic brain injury, autism, multiple disability, other health impairments, emotional disturbance, intellectual disability, The downside: Because they are legal documents and may be audited and are monitored on a quarterly basis, educators may have a very high self-preservation incentive to make certain your child is meeting his goals….at least on paper. The more savvy the parent, the more tricky this can become.
LEAST RESTRICTIVE ENVIRONMENT (LRE): This ensures your child is placed in an environment that meets his needs as independently as possible in an educational setting that is appropriate for him. The goal is to work toward the LRE. The downside: For those of us with kiddos with Autism or executive functioning issues, this is not always cut and dry. Especially those without intellectual impairment but perhaps have a language disorder or another issue which may stand in the way of independence. An emerging issue in the field is for those kids who are considered “twice exceptional”, such those who are intellectually gifted but with severe behavioral issues. And what does “least restrictive” mean anyway? My kid who needs 1:1 to learn can totally sit in a regular classroom to do that. However, I believe educators interpret LRE to mean that he be in a contained classroom without a 1:1 because then he might have more physical independence in that room. Who is right?
PROCEDURAL SAFEGUARDS: Protections for your child…..protections for you as a parent. Because of IDEA, there are procedural safeguards in place to make certain your child is receiving the services the school says they will provide and a protocol to follow if you believe they are not. Additionally, these protections allow for parent participation and child participation as equal members of the child’s school team. The downside: Let’s face it. If you are not an educator or even know where to go to get what you need, you will never be an equal member of your child’s team. Procedural safeguards and parent participation are ultimately only as good as the questions you know to ask, as your attorney and as your bank account. The catch-22 if you do live in a very good school district? There is a good chance that anything that goes to due process is going to take a LOOOONNNNNGGG time. And think about that for a second. If there is a FAPE violation and it works its way all the way up to a due process hearing doesn’t that seem counterintuitive for your school district to allow little old you to go to court with them? Wouldn’t it make more sense to fix the problem since it would be much cheaper and less time consuming to do so? It’s not. At least not to them, because no matter how much the district doesn’t want to throw money at something, they can still probably afford to pay a better attorney for much longer than you can. And besides, the year and a half it could take…perhaps that child won’t need what it was you were asking for by then. Or worse, make your life complicated enough that you will have to back off and not follow through. That seems like a pretty good gamble for a district. It also doesn’t set a standard for other families to ask for the same.
The last 25 years have been interesting ones for the education system as a whole. When the parents who walked before us clawed and fought and struggled for these laws it was at a time before the internet, before all the revisions, before standardized testing existed in the way it did, before No Child Left Behind and before Autism was 1:68. IDEA is necessary no matter how you slice it, however it exists in a very different system than it did in 1990.
At this point I know a lot of the law like the back of my hand and the parts I don’t know, I am now educated on how to find those rules.
I have a list of socio-emotional goals for almost every developmental issue at my finger tips and I have an entire community of people going through the same struggles I am at the click of a button day and night. All of this has been achieved through this tiny-huge world we have online.
I know exactly the gap closure between special education kids and regular ed kids, not only for my district, but for my child’s school.
I know the 6 payment tiers that exist and the formula used to calculate how much extra funding my district receives for each of my kids for using special education services.
I know what belongs where on all 13 sections of the IEP and how to make a goal measurable.
And I know when I am being BS-ed.
I don’t know all of this because of my training…I know it because I live in 2016 and any parent with a computer and the desire can learn the same.
In 1990, my school district certainly was not expecting 1 out of every 6 children attending (or 15%) to have some sort of developmental disability or for the Autism rates to be 600% higher. My child’s elementary school currently has about 700 students and about 100 IEPs (last I heard)–all while serving about 29% of their students as English as a Second Language with limited proficiency. Teachers are stretched thin. Inclusion and LRE are so important for our kids future, yet most regular education teachers were not taught the basics on how to include and teach special ed kids in differentiated instruction or how to manage a classroom where there are multiple children with conflicting accommodations. (ie: When Johnny gets stressed, he can crumple paper…but Jimmy’s auditory sensory integration issues make it impossible to keep it together when he hears paper crumpling….). Parents are communicating, educated and knowing the legal hoops to jump through if their children’s rights are being violated. It is a system that cannot hold itself up and still serve our most vulnerable children to be the most successful they can be. Parents…please keep fighting for your kids. Please keep learning everything you can. Educators…please do the same. I do not have the answer. I am just hopeful it is found before my children have to move on from the “protective bubble” of IDEA and there are no grown up IEPs.
Running through Water 