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.

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.

Autism Awareness Month. X is for X-Ray.

Day 24

Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety. Kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals–yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world. If I could only take an x-ray of A2s little mind and see what he could for 10 seconds. (Feel free to smile at this picture….)

Autism Awareness Month. V is for Village

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Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.

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

After seeing a thread from another writer today about the topic of trauma response in reference to the state of hypervigilence as special needs parents and all of the universal agreement, I thought I would share this again as winter break winds to a close…..

Running through Water

-font-b-Handmade-b-font-mini-kraft-paper-font-b-envelope-b-font-5-8x9cmThere 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…

View original post 412 more words

Gratitude with an Attitude. The Bigger Picture of Advocacy.

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It is time again for the November Thankful Challenge on social media. For 30 days people publicly declare the things in their lives for which they are grateful.  As a therapist, I can tell you its an excellent daily exercise in mindfulness–a way to connect and be present for those things we tend to take for granted.  Soul soothing salve in the bustle of every day life.  If we take a few minutes every day to reflect on the things that are going right amid the trashcan fires of life all around us, over time we can actually retrain our brains to become more centered, less reactionary and supposedly just happier in general.  It becomes a good habit.

So, why don’t most people take appreciative stock every day? 

I believe its because most of us have what we need (most and need being our operative terms.). So even if you don’t have much, you DO probably have a roof over your head, access to clean water, some kind of education and likely one person in your life who cares when your birthday is.  Those are things we easily take for granted.  This doesn’t always feel so much like gratitude in comparison in our rich-kids-of-Instagram kind of society and things like rampant poverty in the streets or young people regularly dying from things like dysentery or malaria are not infused in our every day life. Yet as special needs parents or as a disabled people, it feels like we are expected to display this type of gratitude in circumstances that at times feels just this imbalanced.

I have somehow won the life lottery and I didn’t do anything to deserve that any more than some starving, orphaned toddler in a war torn country did to deserve his lot.  There are many people who might look at my family and think otherwise since we were dealt the hand of having a child with a disability.  We have a life that can be exhausting and lonely and sometimes just very scary but what I find is that when life is that way, it is rarely because of anything my child has done or his disability itself…its more about the circumstances around him that prohibit understanding, access, equality or equity.

And thus the rub of the special needs parent and the expression of gratitude toward professionals who serve their child.

If someone asked my child’s providers,”Do you think A2’s mom is grateful for the services you provide her child?”, my guess is that at least 80% of them would answer no. They would be completely wrong, but still.  If that same surveyor could time travel and go back year by year to 2007 when A2 first started getting help and ask the same question, I  suppose that the percentage who would answer “no” would shrink in proportion to year asked.  In the last several years, regardless of how many holiday gifts, number of hours I volunteer, amount of money I donate, number of thank-yous doled out, at this point I am still going to be seen as a wistful pariah to those whom I ask more.

As A2 ages and the disparity in needs between he and his peers grows, so does the need for advocacy.  There is a pervasive belief system which keeps those who are disadvantaged in some way from asking for more and it is through the guise of gratitude and the false belief that the basics are a form of entitlement.  You are lucky to get what you get….even if it is not meeting your needs.

  • 20 sessions of speech therapy for your non-verbal child?  Well…at least your insurance gives you that much. Some people can’t get speech therapy approved at all!
  • I’m not really seeing progress in my child, but the aides are nice to him and he seems happy.
  • He doesn’t need a bus aide.  He can make noise so its not like it would turn out  like  that boy who died on his bus because they forgot about him all day….
  • Sorting nuts and bolts is a career for lots of people. She may have an above average IQ but she’s lucky anyone is willing to take a chance on her
  • Kids just love him here at school, but no….we can’t tell you who any of them are so he can invite them over and extend those friendships to the community.  At least kids play with him here, that says a lot about the kind of person he is.

When exposed repeatedly to systemic issues that shame you into to accepting less, you get a little crisp when it comes to the process of fawning over people doing the jobs they chose. Can you imagine for one minute being OK with your child failing a subject at school and then thinking, “well…at least no one is hurting him there”?  No…those things are not interchangeable.  Ever.  As parents, we want to always feel and show gratitude to those whom we entrust our children, but when trust is bent it dulls the surface.

A couple years ago, one of the school administrators let me know just how stinkin’ cute A2 is and how he brightens everyone’s day and how much kids just love him.

“He has made so much progress..he comes right up to me now and always asks to see the PA system!” she exclaimed.  I nodded and smiled and said nothing about how platitudes like that can ruffle the feathers of pre-adolescent special needs parents because, you know….gratitude and grace. We have to show ours a bit differently. It’s not that we don’t like the compliment, however very soon, that go-to strength of his of being little and cute, the thing that draws people to him and keeps people friendly  will be gone. Drinking out of a sippy cup with a full beard is not adorable. It will be confusing and odd to people who don’t know him.  And it scares the hell out of me. So instead I say nothing for fear of not seeming grateful for at least that.

“Yes, progress.” I say. “Though I worry. He still cannot read, we still have not cracked that code and he only has one more year here.”

She side eyed me with a friendly smirk , lifted her finger as if to gently stop me and said “Mrs. ATeam, you GOTTA focus on the positives.  You just gotta.”

Do I though?  

Focusing on the positives is actually WHY I have to advocate and ask for more. It is not for the purpose of making sure other people can see the gratitude.  More out of the box thinking, more time, more energy, more inclusion.  I see what he is capable of achieving all while being systemically reminded in IEP meetings of things he still cannot do, how services won’t be expanded to accommodate that fact and how planning for a future where if we are lucky, he will get to be a marginal member of society. Unfortunately when faced with this frustrating reality, as a mother I don’t have enough energy left over to make people feeling good.  I used that energy up in the front end.

My child lives in a society that sees the deficits, that sees the differences and believes that the slightest hint of meeting his needs because of his differences is an entitlement.  A society that believes that being adorable is a strength. A society that makes heroes and saints and examples out of others showing my child dignity when they come to work or are being a friend.  A society that doesn’t hashtag abuse, neglect, bullying and even murders against children like mine.

So team members…if you are confused about my level of gratitude for your involvement with my child, don’t be.  I am never short on gratitude and when my child is happy and progressing, what our collective efforts are doing is working. There is nothing I could be more grateful for, just like any parent.

But I understand.

I too have a job where the pay is low,  the paperwork is tedious and 100% of my work is about helping other people. I too am rarely told thank you. But that is not why I do what I do.  I am trying to make the waves to change systems and influence the way the world sees people who are at a disadvantage. By accepting less simply because we are told we should be grateful for what we get is the dysfunctional thinking that will keep things inequitable.. always.  I am doing the future of disability advocacy and everyone who works with kids like mine a disservice by this act as well. When I am sitting on this side of the table,  its my job to check and double check your work, ask questions and tell you when something isn’t working.  That is not the opposite of gratitude, that is showing you that what you are doing matters. Its the ultimate compliment.  My kid is your boss and I am trying to teach him to always get what he needs based on HIS different needs in this world.

I’m just trying to do my job as his mother, one that is universally never the recipient of gratitude is often met as if I am a villain and yet is still the most rewarding job in the world.

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..

Running through Water

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Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…

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Autism’s Lost Text Message

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One night as I was plugging in my son’s iPad, I noticed he got a text.  Many parents lose sleep over whether or not to invade their preadolescent’s privacy by looking at personal messages, but not me.  My child at 11 years old is completely illiterate and he had never gotten a text before.  I glanced around as if nervously waiting to get busted for reading it, but the truth was my stomach was in butterflies out of joy and excitement.

Hi A2.  This is Ryder

Are you in bed?????

If you aren’t what time do you go to bed???

Maybe I have been wrong!  Maybe school has been helping him truly cultivate and explore friendships after all! Real ones!  A2’s class picture was on the refrigerator and I ran to it to ask him which one was Ryder. I recognized several of the boys in his class but didn’t know anyone named Ryder. Unfortunately, my son has a severe language disorder called Childhood Apraxia of Speech in addition to Autism so I had no way of knowing for certain which one Ryder was because A2 enthusiastically would answer “yeh!” to every child I pointed to including the girls.  Could he be a child from the resource room?   I could not know that either because  the school will not tell me the names of any of the children in that room due to “privacy”.  The kids he spends the majority of the day with.  The kids who also probably never get or send texts or receive invites to play. The kids, like A2 who can’t just ask each other and then come home and tell their moms.

My husband and I were feeling almost hypervigilant over where we would know this child from since the phone number’s area code was from a city we used to live in many years ago.  A2’s real name is an unusual one, so clearly this is meant for him. How did he get A2’s number since A2 doesn’t even know it?  Does this child comprehend that A2 can’t read? Could this be an adult?  A teacher?  A predator?  My joy was quickly turning to irrationality as my husband texted back to give this Ryder person a piece of our mind!

As it turns out…..Ryder was trying to get in touch with A2.  Just not MY A2.  Ryder was in 6th grade and had just moved from the area code on the message to our area code and had met a new friend at his new school (not ours) that day, exchanged numbers and did what every 12 year old does when making new friends.  A2 was contacted by a ghost. An illusion of a promise of the world to come.

The coincidence lacked the sparkle of serendipity and sent a gut punch that made the butterflies swirling in my tummy fly out of my mouth and away into the sky out of reach.  One three lined text of 19 words, 57 characters, 6 question marks and 2 happy face emojis sent me into a 10 minute emotional tailspin ending in a disappointment.  While my reaction may seem dramatic and my sweet boy was oblivious, man alive, I know he would have LOVED for that text to be his if he knew. You see, that would mean someone wanted to tell him that they got a new skin in Minecraft, or ask him if he wanted to ride bikes to the park or see if he’s allowed to see that Jason Bourne movie. It would mean that someone might be sneaking him a You Tube video he isn’t allowed to watch at home or asking him if he thought the new girl was cute.   It would mean that someone was thinking of him right at that very moment. It would mean he had value to people other than me and his dad.  It would mean he was growing up.

Before this whole parent thing came along and made me loopy with worry, I used to help families move their loved ones into nursing homes.  One particular instance, I helped take inventory of a man’s belongings and I asked him to give me his wallet so I could start a resident account for him to keep his $10 bill safe. He refused and his wife asked to speak privately with me in the hall.  “I know he has no need for money here, but is there any way you can make an exception to let him keep it with him?”. I’m certain I did not handle the situation with sensitivity or understanding because she replied, ” We were never wealthy people but he was proud of the fact he always put food on the table or could hand his sons money when they needed something. That money in his pocket makes him feel like a man. And that, child, is all he has left to feel like one.”.  I let him keep the money and have contemplated since then what the last material thing I would hold on to would be and why. I just didn’t realize that it would come earlier in life and be a random text message that was not meant for my child.

These things.  These little things that give us a perceived sense of value–that we anchor to other things and make them into something more.  Ultimately, the text itself was probably meaningless to A2.  He however does very much care about all those things that receiving a text implies.  Having a way to communicate with the world makes you a part of it and having a rolling digital scroll of blue and white messages are like the receipt to prove it nowadays.  My friend’s daughter left her phone at home while she was at overnight camp and powered up when she returned home to 1022 unread text messages. I never did ask if she read them all.  I do know that A2 will never experience the betrayal that can come with adolescent friendships and are exacerbated by text messages.  No girlfriend break up text.  No secret texts between friends who are standing right there with him, exploiting his trust.  No anxiety over the three dots or “read” receipt.  No.  None of that. While I am disappointed that Ryder misdialed and reached out to the wrong A2, just for a moment I thought about grounding A2 from his device because he knows he shouldn’t be texting so late.

I would rather___________ than go to curriculum night.

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Many years ago when A2 entered the public school system he came from a private school that had a peer program and an ABA focus.  He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young.  It was no small decision and perhaps ultimately made under the haze of xanax.  I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!). The desks were so small and facing each other.  Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling.  Not at all what his ABA classroom looked like…way too much to distract..but it was all good.  He will learn to adapt to this no problem…the neighborhood kids are all here!  Someone took the time to take all the crayons out of the boxes!   I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else.  There was an envelope on his desk with all the “getting to know your child” papers like everyone else.  There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else.  Sure….my mother hips were hanging over both sides of the tiny chair and sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me…..but that’s what we do here in public school…normal, regular people stuff.  Then the teacher started talking.  And talking.  And asking us to turn pages in our packets.  And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last.  And the road map to get there sure as hell was not the road map to get to Italy or even Holland for A2.  Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot.  But it’s a dry heat.). I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out.  That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse.  A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around”.  She meant well, but he could be a rock star at his other school.  I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of stoli while listening to other parents ask questions like,”what if my child is above the standard for reading?”  or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac…but the vodka would probably be  frowned upon at the administrative level.

Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%)…I don’t fit a mold and when I realized I was going to be a mom 13 years ago I had no expectations my kids would either.  I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo.  I’m ok with all that.  What is hard is that the rest of the world generally is not.  While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask  other kids if they will skype or text him later.  Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway.  He doesn’t get detention for talking out of turn or showing up to class late.  He doesn’t trade carrots for cookies with the kids at lunch. The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book.  And curriculum night?  Well…all those things are written in the blank spaces between the lines on the syllabus.  The syllabus that is only visible to certain parents.  Not just like everyone else. The tiny desk is like a mirage.  Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him.  Goals are set to reflect the things A2 CAN’T do rather than what he can whereas the curriculum for the rest of his peers are focused on what they WILL do.  And not just at 80% accuracy in 4 out of 5 observed opportunities.  I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely.  And I won’t sit through that.  So tonite, the very last curriculum night of elementary school for me ever….like a pro  I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.

The bottom line is I would rather have heartburn and a hangover than go to curriculum night.  What would you rather do?

Here is a short list I had some friends help me compile.  Thank you Dava, Kelly, Anne, Carmen, Jessica and Katie

Express my dog’s anal glands

Watch another episode of Caillou

Make out with Donald Trump

Fall asleep in an Uber

Run 5 miles in the summer without chafe guard

Receive a text from Anthony Weiner

Wear truck nuts as a fashion accessory

Get through a Monday without coffee

Drive across country with my kids with a dead iPad battery

See my dad in a man-thong