Autisable Dads: Life with Autism from a Parents Perspective

This past week we had several appointments to be at, and let's just say they were appointments that were months in the making. So to say that anxiety was present is an understatement. After all, we needed to arrive at our various destinations in time. If we missed our appointments, it meant we had to reschedule. Something no one wants to do, regardless if you're a special needs family or not.

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Ever read a headline to a news article and something about it doesn't read right?

Yeah, that has been me constantly, as I regularly address things within the autism community.

I discovered years ago several different languages within the autism community that are spoken. And over the years it appears to have become more complicated.

There are different aspects of the community, and each has its own way of saying certain things.

First, you have different groups within the autism community:

There are autistic individuals, parents, and professionals. Within these groups, there are subgroups of people, as each group has its own way to communicate with each other and with those that are outside of their own group.

You have the spectrum of individuals who are autistic, and you also have parents that are single, married, and who themselves may or may not be autistic.

You have professionals as well, and each profession has its own language and way of doing things. Educators don't speak Therapists, just as Doctors don't speak Lawyers and visa versa.

So, what is an ableist? What is neurotypical? What is level 1 vs level 3? What's an IEP, or a BIP?

Confused yet? Yeah, I'm still learning and am always a bit off on this stuff, and I've been navigating the autism community for over 16 years... but listen in on this week's episode as I dive into this subject more... and how it can relate to how autism is being reported in the news - and how we can learn more about autism from a variety of perspectives.

Our son likes to be at home, doing his own thing most of the time. It is interesting when he wants to go out, as they are typically an hour or two adventure - then back home we all go.

Crowds are a challenge, to begin with, and then add sensory issues on top of daily life, and you have an extra set of sensory issues to deal with. Let's just say that every time we go out as a family it requires an extra layer of planning and logistics.

Ever get that feeling that some days you are the bird, and other days you're the parked car?

Let's face it, we all have those days. But what is incredible is my son's ability to find joy in the midst of all the craziness.

Of course, there are moments where the sensory issues are a bit much, but even after those moments he will laugh and giggle.

Couldn't it be the same for us? We dive into this thing called life and can get stressed out over the littlest of things, only to discover that our stress was often self-imposed.

This past week my son reminds me that in spite of what is going on, find the joy.

It's a reminder to myself to keep my own attitude in check.

Sure there will be challenges at your job, in your home, in anything. The question isn't what's going to happen next... but how will you handle those challenges.

Sometimes that joy is as simple as a random act of kindness, or just a smile as you walk into a room. It could even be a moment of silence after being around a lot of noise throughout the day.

What do you tend to find as your joy?

You'd think with a title like this I'd talk about something like insomnia. But long hours and sleepless nights are a common theme for families with autistic kids that have sleep routine challenges.

But long hours and sleepless nights have several medical side effects as well, including stress.

Spring is upon us, and at our home, that means weather changes.

With temperature swings and barometric pressure changes, it's that time of year when we are keeping on top of meds, diet, and everything else. I shared about these sensory issues in a previous edition of this newsletter.

Now, add on top of this any routine changes, and the stimming just increases exponentially. Stimming isn't always just hand-flapping or clapping, it also may be taking every toy out and throwing them around the room...creating an event of epic proportions on par with an F5 tornado.

Today I chat with Geoff Weber, the CEO of Heirloom Cloud.

Have you ever had a song in your head that you just needed to hear?  Well, in this short episode is I share a moment where my son expresses the need to hear a song by Adele.

This week I chat with Michelle Babitz. She and her partner Robin have well over 30 years of experience as special ed teachers and have been on a mission in recent years to help special needs families with a great, affordable, legal resource.

I’m cautiously cynical these days.

My in-laws gave me a sign to hang on the wall in my office that reads “Sarcasm, just one of the services I offer“. Yeah, they know me well. Maybe it’s a GenX thing, I don’t know. Some of us are just built this way.

Don’t get me wrong, I’m all for appropriate research needing to be done, but let’s just put this in perspective, shall we?

Millions of dollars are poured into autism research, and although I know that will and should happen, it does very little to help families of autistic kids in the here and now.