B is for Boredom: 2020 Autism Acceptance Month

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Many hours spent on bridges and docks and piers. Don’t be confused by his face. You are not looking at boredom.

The topic of boredom for A2 has not dissipated for us since I first wrote about it in 2015. Instead it has become far more complex and it has teased out some things I have always known and some things I never realized.

A2 still desires socialization. He will still stand at the back window looking through the trees to see if the neighbors are out playing basketball. He will sadly ask to go over, reflecting he is already aware of the answer. At 14, play dates with adults present are no longer planned. Other kids really like A2–he is friendly and sweet and makes anyone near him feel special. But they are no longer referred to as “friends” like they were when they were nine. Instead, they are now “peers”. While in 2015, that would spark a bit of resentment, today it only makes me just a little bit wistful while I wait for the existential slide of middle schoolers through their developmental rite of passage of becoming their own person in a social world. They might soon recognize just shooting hoops without playing a game is ok. A shared popcorn in a movie theatre side by side is ok. Cheering on the Buckeyes or the Clippers and high five-ing is ok. We can wait. That is hope.

A2 still cannot initiate or maintain a leisure activity at home other than switching out screens and still will pace anxiously asking, “Wha’ is da schedule?” until we show him that we indeed have a schedule and potential order to the day, even if he cannot read it. Even if we don’t follow it. (Side note: I have recently had the notion that A2 thinks there is some magical schedule every single day that somehow everyone around him is aware of but him. We all know know what comes next and we are just holding out on him). In the last 5 years though, I realize he asks more for activities than he does people. And when he does ask for people, he asks for me or his dad. And sometimes his grandparents or uncle, which I always found unusual since he spends very little time with any of them.

You see, I now recognize I cannot untangle the wiry, rat-king ball of Christmas lights to always determine what strand is boredom and what is loneliness. Let’s face it, I think most parents are ok with their child being bored, but rarely are any of us ok with them being lonely. I have had to tease out what just LOOKS like boredom or loneliness. Which wires are behavioral challenges and which are moments he is attempting to communicate or capture the attention of someone else. Maybe it is not boredom at all. He may be in deep contemplation of some visual detail around him and as he sits and stares off, he may not be waiting for his personal conceierge, driver or tour guide to whisk him to the next place or engage in discussion over what he sees.

Sometimes this is hard to see too because A2 is so joyfully involved in so many things. He plays baseball every summer for the Miracle League. He is a state champion bowler with the Special Olympics. He loves the zoo and the science museum and Chuck E. Cheeses. A2 lives for summer for crowded festivals and concerts and baseball games. In the winter, he figured out how to find the movie theatre app on my phone and has actually purchased seats to movies (unbeknownst to me). He lives for Columbus Blue Jackets Hockey but seems ok with defaulting to OSU hockey or women’s basketball (which is $100 less a seat!). We are groupies one Friday night a month at a local bar where his favorite band plays and they keep the french fries coming. There are times we are surrounded by so many people, yet we are still experiencing all this excitement completely alone–shared just between the two of us.

I have realized my boredom and his boredom are not intertwined. We have stood on docks of piers in major cities and watched the boats and barges and helicopters fly overhead for hours at a time. We have sat on similar docks with still waters at the end of quiet meadows watching the ducks drift by. We have paced the length of regional airport lobbies watching single engine planes take off and land. We have spent countless hours of outings like this for years, where even during extended family visits, they will choose not to attend because these ARE the activities that he wants to do. I have learned to let go of sadness of not feeling important enough to share the space of our leisure or the recognition I have spent 1000 afternoons bored and lonely and might want some company for my overactive amygdala and ADHD brain.

Instead, I learned to Just. Be. Present.

And just like that, I recognized A2 is not bored or lonely in those long afternoons. It is me. And he and I are not the same person. I started noticing the art and details and patterns around me. I started noticing when the light was “just right”…or when it was about to be. I started noticing ambient noise that is drowned out by attention grabbing sounds (which, by the way, are typically man made). I also started noticing when I was not in the right mindset to go sit for so long and started teaching A2 to be considerate of my feelings time to time in those moments and how to compromise. He is empathetic and has the capacity to learn that and should, just like every other teenager.

I have so many more thoughts and concerns about the topic of Boredom and how it manifests in our Autistic Family in 2020, but during this global pandemic that has moved from social distancing to sheltering-in-place to quarantines, I recognized that there are many, many folks out there that are experiencing boredom or loneliness on a level they never have. For those of you who that description fits the bill, look to your autistic friends or caregivers. We all still have the capacity to be entertained and to communicate and to keep busy. I find people are not sure what to do with a slower pace, a smaller world filled with uncertainty or with believing their time is being spent without the perception of productivity or an end result. Us Autism Families live on a higher plane of living than what modern society has sold us all. Ask us. Most of us are happy to include you on how to navigate this much more familiar place.

2015: B is For Boredom

While A2 is the most fun loving, joyous person you will ever meet and lovess to be on the go–like many children with Autism he struggles with extreme boredom since he requires adult intervention to choose, initiate and maintain activities. His explicit expression of wanting to play with other kids is emerging but often it leaves him alone knocking on the back door window as he watches children playing unsupervised across the street.

2020: B is For Boredom

Autism Awareness Month 2015: A is for Aides

Day 1

A is for Aides.

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

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

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

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

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

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

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

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

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

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

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

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

Something for Everyone. A Few of My Favorite Autism Resources

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photo by Pixaby

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:

  1. Is there any research behind a method? If not, are they pretty clear about that?
  2. Does the resource have any input from someone with a disability/caregiver?
  3. Does the “helping” resource ensure the individual’s dignity while still helpful?
  4. Does the resource claim to be the only or best way to do something?
  5. 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 Book 2000 by Carol Gray

The Hidden Curriculum: For Understanding Unstated Rules in Social Situations for Adolescents and Young Adults (2013) by Brenda Smith Myles, Melissa L. Trautman, Ronda Schelvan

Navigating the Social World: A Curriculum for Individuals with Asperger’s Syndrome, High Functioing Autism and Related Disorders (2002) by Jeanette McAfee

Skillstreaming the Elementary School Child: New Strategies and Perspectives for Teaching Prosocial Skills (1997) By Ellen McGuinnis and Arnold Goldstein

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 ApproachThe 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

Running Through Water

Special Books By Special Kids

PEAK Relational Training

TED Talks

OCALI (Ohio Center for Autism and Low Incidence

Autistic Not Weird

Kerry Magro

BLOGS/SOCIAL MEDIA I LIKE

Check out my link here. This list is always growing and changing!

HELPFUL WEBSITES

Education/Learning/Advocacy

Understood

Wrightslaw

Ohio Center for Autism and Low Incidence

Autism Internet Modules

The US Department of Education

IDEA (Individuals with Disabilities Education Act) Full PDF Text

IDEA State Contacts

Disability Advocacy and General Info

The ARC

Disability Scoop

Autism Society of America

Respect Ability

Autism Awareness Month. G is for Genetics (and Guessing)

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(originally posted April 2016)

G is for Genetics

I get asked often what I think caused my child’s Autism.  I believe it is completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love my kids fiercely. Our struggles would be the same whether or not we knew the ‘why’ part.

Infection in mother during pregnancy, vaccine accidents,  overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all.  And they all have the same message:  “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT.”   These theories are also part of what drives the Neurodiversity movement.  That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different, so it is not something to be treated. Behavioral disruption is misunderstood communication and all the comorbid conditions such as GI/bowel issues, intellectual impairments, mental health issues are just that. Something not related directly to Autism (a whole other can of worms within our community….).

Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM.

To demonize parents who make decisions you would not necessarily make is also counterproductive. 

As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree, I just have to have empathy.

Here is what we do know.  There is a genetic component to Autism and it is likely paired with an environmental trigger.  Just like Type 2 Diabetes. You can’t develop this unless you have the genes.  You make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American.

We just are not 100% certain what that common genetic component or the environmental one in Autism.  I am not going to even pretend to know anything about genetics. The best I can do is tell you:

  1. Picture a city with 20,000 streets.
  2. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
  3. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
  4. (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.

Autism Awareness Month. Day 3 2015. C is for Coping

Day 3

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.

Day 2 2016: B is for Behavior

Autism Awareness Month A-Z original 2016
B is for Behavior

Running through Water

IMG_2885B is for Behavior

All behavior serves one of 4 functions.  To gain attention, to escape a situation, to gain access to something (usually tangible) or a response to an internal stimuli such as hunger, illness or exhaustion.  Seriously.  Just 4 reasons anyone does anything.  Think about it…you won’t come up with a 5th..I have tried.  Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more…

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Why we do the things we do. The trauma edition.

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(originally published 3/2016)

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.  

Sorry about the envelope.

5 Pros and Cons of IDEA: What Every Parent (and educator) Should Know

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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:

  1.  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.
  2. 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.
  3. 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.
  4. 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?
  5. 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.

Regular Ed Teachers: Top 5 Ways to Keep Special Needs Parents Off Your Back

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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.

“Mrs. ATeam?”

Gulp.

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.