Episode 1: Podcast Intro

Parenting Severe Autism, Episode 1: Intro, Mission Statement, Parental Pet Peeves, Call to Action

Transcript

Shannon Chamberlin  0:00  

Hello, and welcome to The Parenting Severe Autism podcast. I'm your host Shannon Chamberlin and I am so glad that you're here with me today. I am a mom, actually a stepmom, of a now-adult child with severe autism. I am not a medical or psychiatric professional, thank God. None of them have ever really been able to help us in our family. Not that I haven't read some helpful information over the years published by those professionals. It's just that when we purposely go to see a so-called Autism whisperers or behavioral professionals, they are dumbfounded and we are more frustrated than when we walked in. They and others have always looked at our son like he's an alien. And it feels like they look at us with pity, sometimes judgment but mostly pity. You know, autism is not going away. Despite what insurance companies and therapy services seem to want us to believe when they put us through the evaluation process over and over again, just to make sure our child still has autism. 

Every day another unsuspecting parent is blindsided with a severe autism diagnosis for their child. My goal for this podcast is to relay our experiences from our household with this disease and lifestyle and hopefully create a community. I hope that I can help you cope with the unbelievable pressure that you are or will be under. I hope to help you laugh through your tears, understand the importance of self-care and maintaining your own identity. And to help you find techniques, products and activities that make a difference in your life as well as your child's.  

Severe autism, in a word ,sucks. This is an emotional subject for all of us. Because of all the different areas of life that are affected. We live secluded lives filled with turmoil worry, devastation, exclusion, danger, avoidance, you name it.  The language here may get a little rowdy at times, just because of all that stuff. 

And just to clarify, we are dealing with severe autism. If you have a loved one who is “on the spectrum”, as they say, you are, of course welcome to frequent this podcast.  If that loved one is experiencing their first date, or a school dance, their first driving lesson, or perhaps going to their first day of college… well, in our household, that is not autism. I know that's not what you want to hear. And it's not that your child isn't special or doesn't have special needs. It's just a different kind of disability. In fact, it doesn't seem like a disability at all, when you compare it to our experiences. When you're parenting severe autism, anything less is laughable and, frankly, insulting. 

That's why I have created this podcast to give superhero parents of special needs kids with severe autism, a community, an outlet - a voice. If you're in my boat, I would like to know about you. Our kids, unfortunately, will never drive, date, marry or achieve the American dream. In fact, the scariest thing for us as parents is thinking about what happens to them if we go first, who will take care of our babies? Yeah, it's like that. 

Our son has a serious cognitive and learning disability along with his severe autism. Others are dealing with epileptic seizures on top of their severe autism and many other things. So if you're a new parent to severe autism, you can benefit from this podcast. If you're right in the middle of the shit such as puberty, you can benefit from this podcast. Let's say you're parenting an adult, you too, can benefit from this podcast. If you're a friend or family member or someone caring for an individual with severe autism, or if you would like to be a closer friend or family member, this podcast can help you. 

I'm going to share every insight and past experience with you that I can think of. I'm going to talk about all of the things that we as parents never get to talk about. And if we do get to talk about, are judged or looked down upon. Nobody understands our point of view. We're going to talk about all of that. We'll talk about our unexpected wins our crushing losses, and the unending wake of devastating disappointment left by ignorant and judgmental family, friends and so-called professionals. 

I hope to give you mental and emotional strength as I share everything that has worked for us, along with everything that has backfired. My spouse and I have been acting, reacting and thinking it over for more than 15 years. Our son will be 22 this year, it's the year 2022. I met him when he was six. He had been diagnosed for just under three years at that time, and I've got a lot to share with you.  I also recognize that you may have a lot to share with me and the rest of this community. So drop me a line sometime. 

We are the parents, here in my house anyway, who scoff at the autism awareness and autism acceptance bumper stickers, decals, license plate frames, tattoos and T-shirts. We scoff, because most every person we've ever known who sports those items, is actually offensive to our child or our lifestyle in some way. Some of them are family members who seem to use those autism promos, and even autism tattoos to get attention. They just love to talk to others about their “special” relative and receive praise about how Oh, so angelic accepting, aware, patient and kind they are just for being related to our son. But have they ever invested any of their time in researching this autism and learning how to help our son or his caregivers?  Have they attempted to learn anything about how our family functions each day or tried to offer us any respite? Nope. And when those family members have a chance to be around our son and interact with him, they treat him like a puppet. It's very clear that none of them have spent any time researching this awful disability for their loved one. They think that just because he's “nonverbal”, they can make him do whatever they want him to do with no repercussions. 

They'll put him in situations that are emotionally and psychologically damaging to him, just because it makes them feel better about themselves. They'll completely ignore his sensory and dietary needs, and they show no respect for his feelings. They actually act as if he has no feelings and doesn't understand anything. They do piss him off by ignoring him and showing complete disregard. Then they leave, and guess what, he destroys everything in the house that reminds him of them. So we'll talk more about familial disappointments, ignorance and apathy and other episodes. 

I've noticed other people sporting those autism items I mentioned they're just plain offensive to our son's sensory issues. They drive trucks and motorcycles that are too big, too loud, too smoky. They blast their stereos. They rev their engines and dump exhaust. My son says Danger, danger. They sit in traffic right next to us with autism decals galore, and have absolutely no regard for the boy with severe autism having a freakin meltdown in the car next to them because they're just so aware. So, you there, with the Autism Awareness garb - What exactly are you aware of? Is it the fact that your very existence is throwing my child into a meltdown and anxiety attack? It doesn't seem so.  How about the fact that you're causing me and my spouse to also have anxiety attacks, because we're the only people with our child, and the only people who can help our child to recover from the sensory overload that you have inflicted upon him?  Or maybe you're aware of the physical and psychological abuse that we as his caregivers are about to endure, thanks to your recent actions. Do you intend to do something with your awareness? Or just claim the awareness? Are you aware that when he gets nose to nose with you, a stranger, and flaps in your face, he means you no harm? Are you also aware that when you flinch at that behavior, he instantly knows that you feel threatened by his sensory processing and that you just became a target for his fun and entertainment? Is this enlightened awareness like watching for motorcycles when driving? Is that what it is? I just -  I'm not clear on it. 

And you over there with the autism acceptance garb - What does that mean to you? What are you accepting? What are you going to do about it? Do you think his autism is a lifestyle choice? So you just accept it?  Is wearing a shirt with some words on it promoting the societal acceptance of a disease going to help our families in some way? Are you planning on accepting our kids into the recreational, therapeutic, educational, and living skills programs that they are currently denied entry to?  Is the simple acceptance of a debilitating disease that turns the sweetest, kindest and most beautiful souls on this earth into misunderstood, raging, violent, destructive, abusive, self-loathing and incompetent beings going to make a difference for any of us? Do you feel especially accepting when you see my son enter a large department store that you're at and desperately try to fill the large spaces with his voice and his movements? Does your feeling of obligatory acceptance help him and those around him come to grips with his reality? Take the damn decals off, you have no idea. 

So we, at my house, are the parents that absolutely can't stand the autism stickers because they do absolutely nothing supportive. And let's not get started on the charities, right? I think that what would really be appreciated is if all the cheerleaders for autism would just educate themselves and others o,r you know, advocate for him - and for us, the caregivers. These are the things that we all have had to do on our own, on top of everything else. We are exhausted. I think it would be pretty neat if, in order to purchase an autism awareness or acceptance product, the consumer had to complete a short training session. That way, we would see the decals or whatever they are. And we would instantly know that we have an ally, someone there who is somewhat educated about what they are seeing with our children and can explain it to others, or be a calming force - a friend out there.  Someone who understands that if we are enforcing a specific dietary restriction, it's a necessity, not a suggestion. Someone who can see the autism on my child and recognize a specific teratogen or environmental stressor, and potentially step in, in some way. Is that a thing, I wonder? I don't buy the crap, so I'm not sure. I think it would be pretty cool. I mean, obviously, we don't want too much interaction. But we also don't like being treated with such disregard. I mean, when's the last time you saw cheerleading items such as this for any other disease? How about Oppositional Defiant Disorder acceptance? Or, agoraphobia awareness? Or yay, OCD. I love someone with OCD?  Wha- you know. So, that's where we stand on it. At my household.

 We're also the parents who loudly object when the world begins to romanticize autism. It used to be that everyone thought of Rainman, when they heard the word autism, right? Now, they may still think of Rainman, they'll think of Temple Grandin. And also maybe a mercenary that was played by Ben Affleck in a movie, and some wonderfully autistic and lifesaving doctor on TV.  Now, people have developed a sense of, Oh, how -sweet -and -special -compassion for these autism icons. Yet, when they encounter one of our kids with severe autism and severe issues, oh, they sidestep they'll side-eye and show no compassion whatsoever. 

By the way, we are also the parents who object to these new online ‘Do I have autism’ tests, which of course only came about because of the things I just mentioned, and everyone now wants to identify as having autism. Listen, you don't just choose autism. This negatively affects the lives of the people who actually do have a serious autism diagnosis. People are becoming more intolerant towards our kids, because their type of autism is not what Hollywood and the rest of the world portray for everyone.

As I mentioned, if you're in my boat, I want to know about you. Please feel free to drop me an email at contact dot parenting severe autism@gmail.com You can visit my site; It's hosted by Buzzsprout, so, it's the abbreviation for parenting severe autism, which is P S A dot Buzz sprout.com. You can go there and get the show notes and learn about topics of upcoming episodes. You'll be able to find affiliate links for products and services that I recommend. And you know, if I post an affiliate link on my site, and you click on that link, and you end up purchasing that product or service, I do stand to earn a small commission from that - full disclosure. And be sure to also check for any discount codes that I may be able to score for you. I'll put them up on on the show notes. 

And I do aim to keep production costs low with this podcast. If you decide to donate on my website to help support my efforts through buy me a coffee, please be aware that a portion of the proceeds from this podcast will be going to help families with severely autistic loved ones who may not be financially able to provide their child with safety or sensory items. This is an expensive lifestyle, and we- we’re all- it seems like we're all on a waiting list, and we never get the things we need. And I want to contribute, I want to help you. If you are one of the families that I'm talking about. Please send me an email about your situation. This lifestyle can be emotionally and financially devastating, and there's no shame in speaking up and asking for help. Remember to check with your state and county frequently for resources and be the squeaky wheel. As I said, most of us are on a waiting list to receive products and services, and depending on which state you're in, you may not receive that assistance for another 30 years. That's my state that I currently live in. So you know, this podcast is just getting started. But eventually the funds will be there and I want to help.  

I'm so happy that you found this podcast today, and I want you to be sure to catch my next episode where I'll address the summer blues we're all about to experience. I'll be sharing techniques and ideas on how to better our mental health and our physical health. It's summer right now it is June, the kids are out of school, of course and underfoot, and we're all dealing with some serious baggage right now. Everyone else's kids, they can go to the public pool, they can go to sleepovers, they can go fishing with family members and do all kinds of fun stuff just to get out of their parents hair but not our kids. They are attached to our hips, aren't they? They're freaking out, melting down, beating us up, destroying our homes and possibly our neighbor's homes. They are experiencing a serious disruption in their routine of the last nine months or so, and it's likely that no services are available for them. Most times we can't even take them anywhere unless we want to deal with a firestorm. And we keep wondering over and over every day. Why? Why are we dealing with this? What am I ever going to do to make a difference in my life and my kid's life? Why me? How long? Is it ever going to get better? Is it ever going to change? I'm going to talk about all of that. So make sure you find that episode, I'm gonna give some great suggestions on self-care, and just little things that we can do -that we have to do -we have to do these things for ourselves in order to continue caring for our loved one with severe autism.

, In my next episode, I'll address these issues and I'm going to mainly focus on your mental health. I'll share some stress relieving natural product options for you. And I've got some discount codes lined up for you too. I'll also share things that have worked for us with getting our boy through this difficult season, what we've learned about our son's summer preferences and other kids that we've met, and I'll just be offering some general supportive ideas. If I receive any ideas from my listeners via email, I'll share those as well. None of us singly is as smart as all of us in a group, right? So, shoot me your ideas in an email and I’ll  share them all on here and I thank you for listening today. 

Remember to subscribe to this podcast, parenting severe autism for instant updates and feel free to buy me a coffee through the link on my website: psa.buzzsprout.com 

Hang in there. You're a superhero :)