Patience vs. Understanding

There is a special fellowship between parents of children with autism, regardless of the children's ages.  Invariably, someone (generally one who is not raising kids with ASD) asks, "What have you learned most in raising your child with autism?"  So often, you hear "patience" as a response.

To me, patience is what's required for long suffering, whether purposeful or not.  You have to wait something out.  According to a couple online definitions, patience is

• the bearing of provocation, annoyance, misfortune, or pain, without complaint, loss of temper, irritation, or the like
• the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without acting on annoyance/anger in a negative way; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties. Patience is the level of endurance one can take before negativity.

Talking my son back from a meltdown, circa 2003

I used to think that parenting two children with autism made me, by necessity, a more patient person.  But more accurately, I think it has made me a more understanding person.  I did indeed need patience early on.  I needed to wait out my children's challenging behavior.  But as I learned what lead to some of those behaviors, I was either able to prevent them or understand them.  Once I understood the function of those behaviors, I no longer felt like I was just waiting out a set of circumstances.  I felt like I was a meaningful witness trying to make sense of a complex puzzle.

The summer gives us an opportunity as caregivers to make some of the pieces fit.  If your child on the spectrum has never had a functional behavior assessment, consider reading up a bit on what one is and then trying your hand, over long periods of observation, trial, error, and do-overs, at piecing one together.  This tool and method of thinking, more than any other, has helped me realize that parenting with understanding is better for me and my kiddos than parenting with patience alone.

And your child's educational team will SO appreciate the effort when you present them the compilation in the fall!

Finally, and not as punctuation, THANK YOU to the families who've given up their loved ones for service to our country.  Memorial Day is a day dedicated to you, and those of us raising children under the banner your fathers and mothers and daughters and sons and spouses fought and died for so appreciate the sacrifices you have made, and continue to make.

Five Things about Autism Meltdowns

One of the most unnerving aspects of autism spectrum disorder, both for the individual with autism and the caregiver or bystander, is the meltdown.  Taken at face value and out of context, a meltdown resembles a tantrum.  You might observe loud vocalizations, an out-of-control body, and perhaps even some physical aggression, directed toward self or others.  While there are some interventions that are the same for both a meltdown and a tantrum, many more would be contraindicated for meltdown resolution versus tantrum extinction.

As the parent of an adolescent with both ASD and mental health issues, I have benefited from a number of articles, books, and trainings over the years regarding the autism-driven meltdown.  Here are my five key takeaways:

1. A meltdown and a tantrum are NOT the same!  A toddler's tantrum has a manipulative function, intended to change an outcome.  A preschooler's tantrum is more emotionally driven, which is nearer to the meltdown, but is largely outgrown as the elementary school student learns to regulate emotions.  A meltdown is not an "acting out", but a cessation of knowing how to act, given the overwhelming environment and lack of readily available coping mechanisms.  Because we neurotypicals don't struggle with the same sensory challenges that people on the spectrum often describe, we have an empathy deficiency in this area.  We need to remember that when we're stressed out, we can't access our coping mechanisms, either.  The storm raging in our brains impacts our entire body.
2. There are always triggers to meltdowns.  You might not recognize them, but this is where the super sleuth in you needs to take over.  Practice "whole-body listening" consistently, taking data, if possible, to watch for patterns.  Consider starting by noting the time of day the meltdown takes place and the duration.  If it's at school, perhaps the meltdown takes place just before or during a particularly challenging subject.  Or maybe it's environmental: the grocery store, the doctor's office, a relative's house.  As you get better at identifying when and where they're happening, maybe notice some physical hints of anxiety (a common antecedent): facial or whole body tension, increased self-regulating behavior (rocking, vocal "stims", etc.), change in speech intensity (louder voice, more rapid speech, extra questions, etc.).
3. Once a meltdown has started, there is no talking.  Verbal processing skills generally go out the window when someone with autism is experiencing a meltdown.  If you've gotten good at recognizing those physical hints, maybe you can help your person with autism get to a safe place to go through the impending meltdown in as dignified a manner as possible.  Perhaps you can have in that space (or with you, as a support person) some cards or a book with images that are soothing or evoke positive associations for your person with autism.  Slipping that quietly within the person's sphere of reference might offer a tool for decompression.  While there are some great emotional regulation apps out there, it might not be safe to put the tablet or smartphone in front of someone seemingly held hostage in that moment by his dysregulated neurology.
4. People with autism in meltdown mode should not be held accountable for their meltdown-related behavior in the moment.  There will be lots of "verbal vomit", and some of it may seem quite personal.  Don't take it personally.  No amount of disciplining destructive behavior during a meltdown will stop the destruction.  This is not to say that there shouldn't be a debriefing and reparative process well after the meltdown.  Your person with autism might not be recovered enough five minutes after a meltdown, but maybe five hours later, or two days later, you will be able to revisit the incident during a stress-free, private moment.  Ask if the person remembers the meltdown, and perhaps what triggered it.  You may have to point out that the person made some mistakes during that time (left a hole in the wall, hurt someone's feelings, etc.), and allow him or her to come up with a plan to "fix" it.  Maybe that's drawing a picture or writing a note.  Maybe it's going to the store and picking up the supplies to fix the wall.  Always be sure to suggest alternative ways of coping with anxiety or anger, and practice these during periods of calm.
   
5. Avoid escalating a meltdown; or better yet, try to prevent it.  Direct eye contact can be threatening to any person in crisis.  So avoid "getting in the face" of someone exhibiting those physical hints.  Get "low and slow" -- consider sitting down versus standing over people in crisis.  Instead of matching their speech intensity, do the opposite.  Talk quietly, perhaps even a whisper, using few words with concrete, easily-understood meanings.  When possible, present a visual support such as a card with a strategy or a couple words on a piece of paper in lieu of spoken language.  None of those are "giving in" to the escalating behavior.  If anything, they're taking fuel off the burn pile.  And remember, this crisis behavior isn't a display for you -- though you can learn A LOT from it.

A couple books I've benefited from: Jed Baker's No More Meltdowns and Ross Greene's The Explosive Child.  Do you have a favorite article, book, or other resource about autism-driven meltdowns?

A Season for Appreciation

While April is a great month for awareness (and acceptance), May is the perfect month for appreciation ... of teachers and mothers.

Last week, we celebrated teachers.  If you're the parent of a student with autism spectrum disorder (ASD), you probably particularly appreciate your child's teacherS.  Since I'm raising two students with special education needs, our family celebrates quite a host of educators.  We appreciate classroom teachers who strive to make their lessons inclusive of all learners, keeping individual needs in mind.  We appreciate special education teachers who meet with their colleagues in professional learning communities to adapt curriculum ahead of time.  We appreciate speech language pathologists who encourage other members of our students' teams to generalize newly-acquired skills.  We appreciate specially-designed phy ed teachers who travel from school to school in our district, often working with students in a wide range of age and ability, supporting them in their physical well-being.  We appreciate art and music teachers who are flexible, sometimes without much support from special educators.  We appreciate school nurses who dispense medication, and secretaries who smile while handing our kids a hall pass, and principals who show up to IEP meetings.  They're all teachers, too -- they teach our kiddos how to be the best them they can be.

On Sunday, we celebrated moms.  I celebrated my kids' grandmas, who've had to learn how to interact in a whole new way with their daughter's children.  In my own private reflection, I celebrated the moms who've gone before me on this journey of raising children with ASD; she who listened to her heart instead of her head (or an "expert") along the way, to her child's benefit; she who strapped on the figurative combat boots in case someone needed some *ahem* encouragement to see her perspective; she who collaborated and compromised to make sure her child would get the supports he or she needed.  Those moms inspire me to continue on our journey with diligence and excellence.  I also celebrated the moms of typically-developing children who are flexible enough to encourage their kids to befriend and support my kids, on school grounds and off.

Good Friend co-founder Denise did another kind of celebrating on Friday and Saturday.  She and another Good Friend autism mom were demonstrating and learning about the siblings of students with special needs through a training program by The Sibling Support Project.  Sibshops seek to increase the peer support and information opportunities for brothers and sisters of people with special needs, and to increase parents' and providers' understanding of sibling issues.  The programs appreciate these brothers and sisters, who will likely be in the lives of family members with special needs LONGER than anyone else.  They may be there after parents are gone and special education services are a distant memory.  Throughout their lives, siblings share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future and caregiving demands.  Siblings also face issues that are uniquely theirs including resentment, peer issues, embarrassment and pressure to achieve.

So here's to you, teachers, moms, and siblings.  We hope those around you continue to celebrate your awesomeness!