Neurodiversity

Something for Everyone. A Few of My Favorite Autism Resources

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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 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

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

Happy Holidays! I’m the Room Parent. I Know You Have Never Heard of My Kid, But……

Jaycee KempLeave a comment
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Pinterest success for a classroom party.  Though, watch out for that reindeer in the second row on the right…he clearly is up to no good.

How we got to December already is beyond me.  I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.

I am a working mom with  a 5th grader and a 7th grader.  In the last 7 years, I have:

  • been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
  •  planned 9 Halloween classroom parties and 10 winter holiday class parties.
  •  baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
  • been a chaperone at EVERY  Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
  •  volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
  • sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
  • stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days

I think you get the picture.  An estimated 2000-2200 hours of my time since 2009.  Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no,  I do not want a cookie, a prize or personal recognition from anyone.  Other than to say this….

I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.

This is not an unusual phenomenon.  I had a conversation with a special ed coordinator in another school district about this once.  She also “lives in the field” like I do having a couple of kids on IEPs.  I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other).  Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.

I didn’t start off this way.  I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom.  While the 1970s were not known for tales of excellence in parenting,  as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.

Then Autism came along and and early on  I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity.  My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”,  he exclaimed after I asked him where he would like to have his party.  Since he had not been invited to any  birthday parties since starting school, I wrote several school staff asking if they could help with names.

The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends.  She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class.  And that was it.

I was perplexed.  She did know my child had a severe communication disorder, right?  I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.

No response. So after a week,  I wrote again but with a much more explicit message.

My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number.  That’s how typical children do that.  We have programed the following into his talker (speech generating device):

“My phone number is ***-***-****.  Can you have your mom call my mom?”
OR
“Can I have your phone number?  My mom wants to talk to your mom”
Given its on his IEP –the need to prompt him to initiate social interactions as well as guiding him use  prompts on the talker, I am sure someone will find the right opportunity to help him with this interaction.  Its amazing to see how far he has come.  As any parent would be, we are so proud and excited for him.”

Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.

(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own.  So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)

I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs.  When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals.  We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory  different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more  flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board.   Volunteering for the purpose of  learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity.  I am lucky to have this as an option, but many…if not most working parents of special needs kids do not.  The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.

So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are.  Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.

**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning.  Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue.  Stay tuned…if you are in this dilemma for your child!

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