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.

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?

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.

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.

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.

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.

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.

In one of my cynical moments, I noticed an ongoing trend over the years as people kept sharing with me various research studies. So this week, I dive into this subject a bit, and as a result, I’ve identified specific areas where families need help, and research isn’t really one of them at the moment.

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?

I don't often share is why after so many years I am more involved in the community now than I was before. To some, it's teaching the world about autism from a dad's perspective. And yes, I do that when it is possible for a teaching moment to occur. I've also shared openly that my selfish goal is to learn more about my son... and that has always remained the case.

But this journey has shown me one inherent truth: this effort is not just about my own selfish needs or desires. Over the years I've seen far too often news reports that break my heart. I've read thousands of articles on Autisable that have offered some deep insight into the thoughts of other parents and autistic individuals that have both enlightened - and were also warning signs.

When we finally received the diagnosis of PDD-NOS for our son, we thought "this is it! Let's get him the help he needs!"

Yeah, that didn't happen.

What followed was the onslaught of information about what that diagnosis meant, what services may or may not be available, and ultimately what wasn't relevant to our situation.

What we learned early on is that what worked for other kids on the spectrum, may not work for ours. Yet we kept on searching for more information, more understanding.

As October is Down Syndrome Awareness Month, we introduce our guest Kimberly Sanders.

Kimberly Sanders naively imagined motherhood as a serene walk beside her children; however, she discovered it is more often unpredictable, fraught with struggle, and ultimately an invitation to sit beside her children in the muck and mystery.  In her first book, Beside You, Kimberly generously shares the unpredictable struggles and rich lessons learned through Lukas, her son who has both Down syndrome and autism.

Kimberly and I dive into her journey, from pregnancy to diagnosis, and we discover what she's learned.

We hope you enjoy this episode, and take the opportunity to get her book!

In this episode, I chat with Christine Weiss, and her husband Dr. Eric Weiss.  They are the parents of Marston, who is autistic.

What we discuss can be viewed as controversial in some circles: Umbilical Cord Stem Cell Therapy.

We explore what Stem Cell Therapy is, what it involves and the steps they take, and how they offer Stem Cell Therapy as part of their own practice.   

They wrote a book titled "Educating Marston", which discusses this part of their journey with Autism, and more.

Listen in, as we chat about this topic - and more - on the latest edition of Autisable Dad's.

Here are the links for the organizations and information mentioned in the podcast:

In this episode, I chat again with Danny Combs of TACT (Teaching the Autism Community Trades).  The last time I talked with Danny was in December 2019, and we discussed what TACT is doing to help the Autism community.  

Since then, he and the team at TACT have been highlighted on the popular Facebook Watch program "Returning the Favor" with Mike Rowe.

With the onset of the COVID-19 pandemic and millions being told to stay at -home, having something that helps parents to teach their special needs has become even more important.

In this episode, I chat with Grammy-award-winning guitarist and fellow Autism Dad and founder of Teaching the Autism Community Trades (TACT) - Danny Combs.

As a guitarist, Danny performed with such artists as Taylor Swift, Faith Hill, Tommy Emmanuel as well as many other top country and Christian artists.

When his son was diagnosed with ASD, he set aside his music career and started TACT... teaching autistic individuals skilled trades.  The organization has about 500 students and an over 83% job placement rate and is the first and only autism training program recognized by SkillsUSA, the nation's career and technical education standards organization.

Listen in, and I hope you enjoy this episode…

This episode was made possible due to our Patreon Supporters.

If you’d like to help support this podcast and our efforts with Autisable, please consider becoming a patron.

In this episode, I chat again with Hilary Scharton.

In this episode, I chat with Donny Gruendler, who is the Vice President of Music Education at Guitar Center.  

Donny Gruendler is also the President of Musicians Institue in Hollywood California and is a member of the Modern Drummer education team and frequent columnist for Drummerworld Magazine. 

Over the years I've seen the importance of music as it relates to a person's ability to socialize and communicate.  In fact, there are several non-profits whose focus on music and theater has helped countless autistic individuals find their voice.

Donny and I chat about this and more, including his own son who has his own challenges with selective mutism.

Guitar Center was recently commissioned a study that dove into music education and it's importance, and they are doing all they can to bring this to light, and are encouraging autism and special needs families to check to see if their kids are interested in music at all, and if so - see if taking some lessons at their local Guitar Center may help them pursue this interest further.

Listen in, and I hope you enjoy this episode...

This episode was made possible due to our Patreon Supporters.

If you’d like to help support this podcast and our efforts with Autisable, please consider becoming a patron.