Many years ago, one of our first home providers was working with another family who had an older teenager. The provider and the client were only a couple years apart in age. (Don’t worry, -the provider maintained confidentiality the whole time!).
One day, I asked what kinds of things she did in her job with the client, to which she answered,
“Mostly, I help her do chores. There. Are. So. Many.“
Given A2 was only about 4 years old at the time, I was simply curious about what life at home with a teenager with a disability would look like without actually considering what life with MY kid as a teenager would look like. We didn’t know our own long and winding road at that point, of course my child would have chores! Didn’t the provider have chores? (As it turns out, possibly not, since knowing far more teenagers now that my kids are teenagers themselves–this parenting philosophy I have might be a bit of a new millennial enigma.)
What happens if a teenager doesn’t have tons of independent leisure skills and has difficulty with self-direction? Do we still teach them how to play with toys? No. If they have not enjoyed this activity as a younger child, then probably not.
Do we leave them alone to wander the house with their iPad? Well…yeah…admittedly sometimes. Especially if they enjoy doing that.
Do we plan on living forever to take care of ALL their needs?Yes, yes we do, but until we figure out an actual way to do that, that is not an option.
The most basic of basic skills must be taught to A2 in an explicit manner. He learns all sorts of things, just like everyone else, but at a snails pace. By not teaching him how to care for his surroundings and belongings, I would be stealing from his adulthood to bank roll a leisurely adolescence. Those processes start NOW so he has a chance for a modicum of independence, the ability to have options and choices and self-determination as an adult. Learning to fold a washcloth may take a typical child 20 minutes to learn and an hour to master. The same washcloth skill might take a year to learn and 3 years to master. Really.
At 14 years old, he is in his evening of the day–the last leg of time being on his side before he is an adult.
A schedule that includes daily expectations gives A2 a sense of peace because he understands how his time will be filled. This summer, with a skeleton crew of help, Momma has been on the case to level up on these skills, scaffold independence and watch him enjoy and take pride in these “activities”. He verbally perseverates less. He comes to me beaming and says things like “Wook! Do it all by yourself!” as he surprises me with a made bed or silverware put in the proper drawers. He is generally, well….happier with chores.
Chores a narrative of dignity and self determination.
Caring for our surroundings gives us a sense of control, a sense of ownership, a sense of responsibility and yes, ultimately a sense of community. If he has to do his chores just like everyone else in the house (ok…maybe not just like everyone else…he actually does his much better many times than his brother!!), I am sending him the message, “You matter as much as your brother and are an equal member of this family” and I am showing his brother equity and fairness by saying, “We are all capable of contributing in the ways we can to this household–A2 is no different”.
I am not a mean mom (most of the time). I like to think of myself as the same kind of mom who makes her sick kid take icky medicine when he doesn’t want to, knowing it will make him feel much better. Not giving the medication makes me feel better because it is easier and I don’t have to see him cry. At least in the moment.
Chores are a pain in the butt. I DEFINITELY have chores I will still whine through, procrastinate doing or forgo altogether. While being an extremely Type A personality and capable of high levels of organization, I am also extremely messy and it happens FAST! I do remember how this unfortunate dichotomy affected college room mates, though at the time, I absolutely did not see the impact. I had to learn that the hard way.
One of my current chores is digging up the patience and consistency to make sure I am teaching A2 how to put his plate in the sink, start his laundry, or wipe down the counter. These tasks are the insurance plan for a future that probably will not include me. As scary as that is to consider, I certainly hope one day it is because he looks at me and in the most apraxic adult way possible says,
“Mom, I don’t want to live with you and Dad anymore. Don’t worry, I have already cleaned up my room and packed my suitcase.”
I posted this 5-Minutes-In-The-Water video about parental instinct on my social media pages back in May. It is time to talk about it again as a teaser to introduce you all to something new we will be doing with A2, since it looks like it really, really is going to happen.
A2 on paper looks very cognitively, socially and intellectually impaired. A2 in person, looks like the prom king. He is adorable, social, friendly and seems to understand ways of the world which elude the rest of us.
My ultimate goal is for him to be happy, as independent as he can be and to rise to his highest potential to be a contributing citizen. Just like most people want for their child regardless of circumstance, right?
The thing is, he has to be able to learn. He can sit still long enough to learn. He is compliant and yet his learning is minimal, basic and cannot seem to transcend across settings, losing learning over time. If something is being reinforced at school, it is unlikely I will see him do it at home. Such is the nature of his apraxia and autism.
Yet I never had the sense that meant he couldn’t learn.
It just meant we were not teaching him in a meaningful way. We weren’t tracking where he learned the best and how (except for once circumstance…and it literally became the thing he could do well everywhere!). I found it odd that I had to convey the concept of generalization across settings. It was interpreted, “He can do it with Mrs. X in the resource room, gym and speech room”. My point was that if he couldn’t do these things at home or in the community, it didn’t matter.
It would be like saying I was fluent in Japanese, but only when I was in my kitchen and only when my one neighbor came over. Would it matter if I couldn’t speak it in any other circumstance?
However, last school year, the behavior support person in my school district spoke a bit about a ‘newer’ program called PEAK Relational Training System. She described what I had been trying to convey for years about how I think A2 learns and how to track this through cumulative data collection across multiple settings. I hopped a plane to the west coast and got trained for a Level 1 certification.
Being I have been the only consistent “team member” in A2’s entire life, case managing ALL OF THE THINGS educational, therapeutic, medical, religious and social…coordinating consistency, training, communicating across all settings. And like everything else, I can go figure out the best thing in the world, but unless I have a dedicated and well trained home team, have education professionals who are critically thinking , while also making them believe I need to play a tighter role and having that happen ALL AT THE SAME TIME, well, it is like waiting for a Super Moon on a Leap Year before the Jubilee.
So I spend most of the time doing a very, very crappy job for my child, or at least feeling that way because I cannot do any of this if even one element is missing. Sometimes that element is me–thus my hypervigilence in learning whatever I can to help. What I don’t know, I don’t know, and I am the physical consistency for him.
And here we are.
All the elements are in place, at least for the moment. He has been assessed and we discussed preliminary plans. Watching the behavior person’s eyes light and hearing her espouse the same mantras about A2’s ability with the right programming along with her sense of urgency to get moving has sparked a motivation I had forgotten when it comes to parental instinct. So, I move forward with cautious optimism. Stay tuned…..
I am fortunate to live near a Big 10 university and know some pretty progressive professors who let me come in to their classes every year and speak freely as an expert.
Why is that so progressive?
Well, for starters,they are not tapping into my professional expertise as a clinical social worker, advocate or behavioral therapist, but rather into my expertise as a parent of a child with a life long disability.
Also, in both my undergraduate and graduate studies in helping professions, not once did we talk about disability perspective or experience from the direct report of the person or caregiver dealing with what we were learning.
As the years go by and awareness grows, those of us who both work in the field of developmental disabilities and who also live in it has grown exponentially.
Have 14 extra minutes? Here is the TEDx Talk I gave a few years ago about the experience of living and working “in the field”.
I am always honored and humbled to speak to our future social workers, nurses, allied health professionals, teachers and physicians. As raw as it might be, I lean into authenticity even when it means I share my political leanings, mostly because those leanings have turned into shovings because my baby’s future is at stake all the time. He needs more than me and a bunch of warrior moms. We need front line people to understand and advocate too. My end goal in about an hour and half to impart all of the things books won’t tell them. What it is like to deal with broken systems, where I have gone to understand how those systems work and the qualities of professionals who have had the most impact in our lives.
I do not have all the answers, the knowledge or perspective. I only have my own.
After almost 16 years of parenthood and about 30 years of social services experience, I have compiled some resources from my personal helping library. My experience both personally and professionally have led me to seek out some pretty specific things. Here are some tips to keep in mind when attempting to gain an inside perspective or personal narrative in the world of resources:
Is there any research behind a method? If not, are they pretty clear about that?
Does the resource have any input from someone with a disability/caregiver?
Does the “helping” resource ensure the individual’s dignity while still helpful?
Does the resource claim to be the only or best way to do something?
Is the writer hypervigilent in any way? Are they constructive in their observations? Do they demonize or humiliate anyone while trying to educate? If they are negative, are they clear it is coming based on their own personal experience? Do they recognize any shortcomings?
**I have not been asked nor have I been compensated for adding any of these resources to this list. I am also not endorsing one resource over another
**This list is not exhaustive! Feel free to contact me with some of your favorites. I am always looking to add to my collection
WHAT ITS LIKE (Autism related)
Neurotribes: The Legacy of Autism and the Future of Neurodiversity (2015) by Steve Silberman
The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults(2015) By Temple Grandin
Schuyler’s Monster: A Father’s Journey with His Wordless Daughter(2009) By Robert Rummel-Hudson (Schuyler is not autistic, but has apraxia of speech)
Carly’s Voice: Breaking Through Autism(2012) By Arthur and Carly Fleischmann
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism(2016) By Naioki Higashida
Fall Down 7 Times Get Up 8: A Young Man’s Voice From the Silence of Autism (2017) By Naioki Higashida
Look Me in the Eye: My Life with Asperger’s (2008) By John Elder Robison
Ketchup is My Favorite Vegetable: A Family Grows Up with Autism (2015) By Liane Kupferberg Carter and Susan Senator
Thinking in Pictures (1995) By Temple Grandin
The Way I See It (2008) By Temple Grandin
Born On A Blue Day (2006) By Daniel Tammet
The Horse Boy (2009) By Rupert Isaacson
Chicken Soup for the Soul: Raising Kinds on the Spectrum(2013)
Aching Joy (2018) By Jason Hague
What We Love Most About Life: Answers from 150 Children Across the Autism Spectrum (2016) Complied by Chris Bonnello
This Is Asperger’s Syndrome (1999) By Brenda Smith Myles and Elisa Gagnon
What About Me? A Book By and For an Autism Sibling (2017) By Brennan and Mandy Farmer Illustrated by Emily Neff
The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction(1998) By Carol Stock Kranowitz
The Out-Of-Sync Child Has Fun (2003)
Disconnected Kids (2009) By Robert Melillo
Sensational Kids: Hope and Help for Children with Sensory Processing Disorder(2006) By Lucy Jane Miller
Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Integration Issues(2005) By Lindsey Biel and Nancy Peske
Interoception: The Eighth Sensory System (2015) By Kelly Mahler
Food Chaining (2007) By Cheri Fraker, Mark Fishbein, Sibyl Cox, Laura Walbert
The Incredible 5 Point Scale (2003) By Kari Dunn Buron and Mitzi Curtis
Exploring Feelings: Cognitive Behaviour Therapy to Manage Anxiety (2004) By Tony Attwood
The Explosive Child (2001) By Ross W. Greene
From Chaos To Calm ( 2001) By Janet E. Heininger and Sharon Weiss
Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns (2005)By Brenda Myles, Jack Southwick
Zones of Regulation: A curriculum designed to foster self-regulation and Emotional Control (2011) By Leah Kuypers
The Relaxation and Stress Reduction Workbook For Kids(2009) By Lawrence E. Shapiro and Robin Sprague
ADDRESSING SOCIAL DIFFERENCES
Thinking About You Thinking About Me: Teaching Perspective Taking and Social Thinking to Persons with Social Cognitive Learning Challanges, 2nd ed. (2007) Michelle Garcia Winner
The New Social Story Book2000 by Carol Gray
The Hidden Curriculum: For Understanding Unstated Rules in Social Situations for Adolescents and Young Adults(2013) by Brenda Smith Myles, Melissa L. Trautman, Ronda Schelvan
Navigating the Social World: A Curriculum for Individuals with Asperger’s Syndrome, High Functioing Autism and Related Disorders (2002) by Jeanette McAfee
Skillstreaming the Elementary School Child: New Strategies and Perspectives for Teaching Prosocial Skills (1997) By Ellen McGuinnis and Arnold Goldstein
ABA (Applied Behavior Analysis) :Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals (1996) Edited By Catherine Maurice, Gina Green and Stephen Luce
PEAK Relational Training System (2014-2018) By Mark Dixon
Bringing ABA to Home, School and Play (2012) By Pam Leach
VBA (Verbal Behavior Approach):The Verbal Behavior Appoach: How to Teach Children with Autism and Related Disorders (2007) By Mary Lynch Barbera
Floortime Approach/Greenspan Approach: The Child with Special Needs: Encouraging Intellectual and Emotional Growth(1998) By Stanley Greenspan, Serena Wieder
The Challenging Child: Understanding, Raising and Enjoying the Five “Difficult” Types of Children (1995) By Stanley Greenspan
Addressing the Challenging Behavior of CHildren with HIgh Functioning Autism/Asperger Syndrome in the Classroom: A Guide for Teachers and Parents (2002) By RebeccaMoyes
How to Teach Life Skills to Kids with Autism of Asperger’s(2010) By Jennifer McIlwee Myers
Taking Care of Myself: A Healthy Hygiene, Puberty and Personal Curriculum for Young People with Autism (2003) By Mary Wrobel
The Sixth Sense II (2002) By Carol Gray
Simple Strategies That Work:Helpful Hints for Educators (2006) By Brenda Smith Myles, Diane Adreon and Dena Gitlitz
ADDRESSING EXECUTIVE FUNCTIONING
Late, Lost and Unprepared (2008) By Joyce Cooper-Kahn and Laurie Dietzel
Taking Charge of ADHD (2005) By Russell Barkley
The ADHD Book of Lists (2003) By Sandra Rief
How to Reach and Teach ADD/ADHD Children (1995) By Sandra Rief
You Mean I’m Not Lazy, Stupid or Crazy?! (1993) By Kate Kelly and Peggy Ramundo
Driven To Distraction(1994) By Edward Hallowell and John Ratey
Organizing the Disorganized Child (2009) By Martin Kutscher and Marcella Moran
Ordinary Families, Special Children: A Systems Approach to Childhood Disability 3rd Ed (2007) By Milton Seligman and Rosalyn Benjamin Darling
From Emotions to Advocacy 14th Ed (2011) By Pete and Pam Wright
All About IEPs: Answers to Frequently Asked Questions About IEPs (2011) By Peter Wright
The Complete Guide to Autism Healthcare (2017) By Anita Lesko
Ethics for Behavior Analysts (2011) By Jon Bailey and Mary Burch
The Five Things We Cannot Change (2005) By David Richo
Getting to Yes: Negotiating Agreement Without Giving In (1981) By Roger Fisher and William Ury
The Only Negotiating Guide You’ll Ever Need (2003) By Peter B. Stark and Jane Flaherty
YOU TUBE CHANNELS
Admittedly, this is a newer realm for me! Contact me to add resources
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…
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….)
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….. (…and feel free to smile at this picture….)