1-21-2023

The beginning of a new year is an interesting time. You’re hopeful that the things that happened well will continue to go your way in the new year. You’re also hoping that the things that did not go well last year will magically stop because there’s a new year involved.

I get it. When we were having tough times at school prior to a break, I was hopeful that the break would give my twins some time to decompress, get their acts together, and launch into a new school year in a better mood. Sometimes that worked. Sometimes there was more pushback that translated into behaviors at home and at school. I was always grateful for the years where the break did the trick – that they were glad to go back to school. But it was always the first three weeks of school after the break that made me on edge – would this be a good year or not?

And on those years that were not, I had to put on my advocacy hat and help the IEP school team figure out solutions to decreasing the behavior without disengaging the student. Because I knew, if we lost the love of learning, we’d lose the battle entirely. So, always, step one – call a meeting.

Did you know you could call an IEP meeting anytime? It didn’t have to be just for the annual meeting – it could be held anytime you see a developing issue that requires some problem solving, new accommodations, or new goals to be set in place.

Those meetings in January or early February were often tiring. I had to prove that something in the classroom was triggering the behaviors that we saw either in the classroom or at home. This looked a lot like pushback or refusal of doing schoolwork. I also had to prove that there was academic impact because of the behavior or attitude. We had to see grades slipping to get the attention of everyone on the team.

The solution during these meetings were often a rewriting of the goals. The main goal for many years was to ‘manage stress and frustration’. The tools we used to do that were always changing – deep breathing, teaching of alternative stress relievers, advocacy, reduced assignments, one on one coaching, small group for testing, read or scribe during testing. Something, anything to reduce the anxiety of having to do schoolwork.

It all worked good and well until COVID. The switch to all self directed, online work, was not what one of the twins needed for educational learning. There was a great deal of gnashing of teeth, verbal complaints, refusal of work. We got dispensation to pretty much bail out on all the subjects except for the one they were failing – Physics. In that case, we accomplished getting through it through hiring a private tutor through zoom to go over homework 2hrs a day, 2 times per week. Plus weekly one on one check ins with the schoolteacher. We got through it. But lost the love for learning. School was no longer a preferred activity.

We are now three years past that first Covid year. The twins have graduated, gone on to community college, and earned associates degrees in general studies. The two years following the trial through Physics helped shape the accommodations and class structure for my one twin to succeed in college – they didn’t like going through the classes, but stuck with it to the end.

We’ve now graduated to the couch, temporarily. We’re all taking a break before launching into the next phase of their lives and its been a good break. The twins and I have our routines that keep us busy and entertained. We’re hopeful for a good future ahead and a great 2023. You can be too.

8-2-2021

Joy. Sadness. Anger. Disgust. Fear. These are the base emotions that were portrayed in Disney Pixar’s movie, Inside Out. I figured if Disney made the movie, they took some time mapping out with neuroscientists what our base emotions are. The movie is a good one to introduce people of any age to simple, base emotions, and then to discuss self-regulation – how to calm yourself down.

The discussion should follow the lines of – where do I feel the emotion expressing? For me, joy is felt in my face – a smile. Sadness, in my heart. Anger in my arms and legs – I move when I’m angry. Disgust is probably my face again. And fear is always in my shoulders.

Once you’ve identified WHERE you feel emotions on your body, its much easier to communicate how you feel to someone else if you’re stuck, or to practice mindfulness and deep breathing to relax the area that is overstimulated. Reading about it is one thing. Being aware of the tension and being able to walk through de-escalation is quite another.

But where is homeostasis? Who are you when you are at peace? Generally, you want to be at a relaxed state, where you don’t feel tension in any part of your body. You may not have any emotions in this state, but just feel at peace.

Lets pause for an example.

The stresses of life start to build. One morning, you may wake up and have anticipatory stress because you’re starting a new job or have a big meeting at work. You feel a twinge in your shoulders. On the way to the new job, you spill coffee all over your shirt. Anger has you flapping your arms at yourself. You rush home and get a new shirt, but now you’ll be late for the job. Disgust and anger at yourself rear its ugly head. By the time you’ve made it to the job, you’re flustered. At this point, you feel pressure and stress in your arms, your face, your shoulders, your legs. And you are not making any sense to your co-workers (or you’re unusually quiet, trying to mask the situation.) BREATHE! Diaphragmatic breathing always helps ease the tension in your body. Take 5 deep breaths and let the stressful moments melt away. Be present in the now, put away what was and focus on what is. Close your eyes and breathe. Focus on relaxing your face, your shoulders, your body. Think about what the next step you need to do to make a good impression. Then march into your day in control of your peace.

This is easy to write about, hard to do in practice. You’ll most likely have to practice de-escalation for yourself in small stresses and work your way up to large stresses. What you may find out is that when you’re completely overwhelmed, you need to ask a trusted friend to help you calm down – to talk through the fear, anger, and disgust that may have you overwhelmed.

So what have we learned? And will we practice this ourselves? And how do we teach this to our children? One step at a time. Model it for your kids. Point out where they are feeling stress and name the emotion for them. Breathe together during a stressful moment and practice calming down with them. Self-Regulation is a journey, not necessarily a destination. Forgive yourself when the practice doesn’t work. Celebrate the calm when it does.

7-29-2021

Do you flap? Rock back and forth? Repeat things verbally? Spin? Tantrum? These actions may be deemed unusual for most neurotypical people, but for Autistic people, it’s a way to regulate something on the inside. Self-regulation is the ability to get yourself to calm down from a state of excitement or stress. For neurotypical people, that could look like taking a break, taking deep breaths, talking through a stressful moment, but for Autistics, it could look like a whole bunch of other actions.

When we don’t get to self-regulate, for both autistics and neurotypical people, we bottle up those feelings, and they often come out in other actions, such as extended uncomfortableness, agitation, crying, or an outburst or tantrum. Autistic people often learn to mask and camouflage their emotions and their self-regulatory motions to fit into society’s norms. What it does is bottle up the emotion, which can be exhausting if the mask or camouflage behavior is extended for a full school day or work session. Its not unusual for parents learn that a child with Autism may not display any disruptive behaviors at school but experience daily tantrums or agitation when a child gets home.

For example, when I was a freshman in college, I did sorority rush for one day. That day, I visited three sorority houses, pretending to be perky and upbeat. I would have rather been more authentically me – listening and introspective in social situations. Perky was a tough mask for me to wear. At the end of the three visits, I went back to my dorm room and cried for an hour because of the exhaustion and stress it caused me. It was then I decided that I never wanted to pretend to be a perky and upbeat person again. I chose not to continue with sorority rush but found other groups in music to be involved in where I could be myself. I can empathize the stress that could affect autistic people who have to wear neurotypical masks daily.

So what can be done to help a person self-regulate?

· Learning the names of the emotions we feel and assessing whether responses can be changed to suit the situation. Are situations a big deal or a little deal?

· Learning different ways to self-regulate, like through mindfulness and diaphragmatic breathing.

· Understanding what actions are needed by an Autistic person to self-regulate in stressful situations and communicating that to a school or employer.

· Providing time and space for a child or an adult to self-regulate during the day, especially after a difficult task was completed. That can look like a short break to the bathroom, sensory room if available, or clinic or other private space where a child or adult can do stemming to self-regulate.

· Disclosing to other students or co-workers the need to move (flap/verbally stem) in certain situations to increase awareness and understanding. Let’s make stemming in public no big deal.

· Identifying a safe person for someone to talk through troubling feelings or to help redirect if seeking help to self-regulate.

In 2020, the CDC reported that 1 in every 54 children have Autism. They all will grow up. As autistics reach adulthood, we’ll see more flapping and outbursts in the workplace, at grocery stores, and in public spaces. It’s better to know and accept that that’s a needed coping mechanism than to stare and judge. I’d rather have people feel comfortable in their own skins by not needing to mask and camouflage. Around me, you can stem and be your authentic self, and I hope the world embraces authenticity as we all grow older.