Ep. 9: Hindsight - The Best Advice We Never Heard

Parenting Severe Autism mom & podcast host Shannon Chamberlin shares some of the best, most life-changing advice that she and her spouse wish someone would have given them.  Share this episode with every single person you know that has any involvement with parenting an individual with severe autism.  They will thank you.

Transcript

WISH WE KNEW

Wed, 8/31 8:22AM • 26:54

SUMMARY KEYWORDS

child, severe autism, nice, life, autism, son, home, spouse, puberty, kid, world, romantic, find, restrain, planned, household, helping, deal, parenting, happy

00:16

Hello and welcome to The Parenting Severe Autism podcast. I am your host Shannon Chamberlin. I'm so happy that you're here with me today. In this episode, I'm going to share a list of the top 10 insights that my spouse and I wish someone would have told us early on when this autism was first diagnosed, and we were first beginning to learn about all of it and how to help our child move through this life. We have come to realize that it's not just about helping our child move through his life, but it really-we have to know how to help ourselves, right? So, I hope this list helps somebody out there. I think it'll definitely help if your child is under 20. So, have a listen. And if it doesn't work for you, maybe you know someone who would benefit from some of this information. Every bit of information we can get as parents of someone with severe autism is going to be beneficial at some point during this journey. 

01:14

Parenting severe autism is hard. We must endure physical, psychological and emotional abuse and we're forced to simply observe as our homes and belongings are repeatedly destroyed. We find ourselves slipping into depression way too easily as we look around our once clean and comfortable homes and see nothing but holes and cracks in the walls, which of course have no family photos or any kind of decorations because our child destroys all of them and will not rest until we give up decorating. We're often not allowed to change our scenery by leaving the house because, of course, our child has to come with us and our child will not tolerate anything that brings us any peace. And we know that our child will bring destruction to anything,  any serene beauty that we seek, including a park-like setting. This is a very difficult life and my spouse and I really do feel that a little heads-up about a handful of things early on would have helped us get through all of this in more of a planned and methodical way instead of constantly just reacting to what is going on. I wanted to share this with you today and hopefully it helps out there. 

01:32

Please remember you can always access all of my previous episodes of this podcast on my podcast website, which is PSA, short for parenting severe autism, PSA.Buzzsprout.com You can also find them posted on my new Facebook page which is parenting severe autism podcast on Facebook. And don't forget, you're welcome to support the show you can donate as little as $1 on the buy me a coffee program when you click the icon on each episode to support the show, and a portion of the proceeds will go towards helping other severe autism families in need. As I just mentioned, we deal with a lot of destruction and things like that, and it's a very expensive lifestyle just trying to survive day to day. So, it means a lot to us to be able to help other families in the same situation. You can also send me an email if you have any questions or comments or you would like to share your story because, don't forget-your stories can help others in this situation as well. And you can send all of that to my email at contact.parentingsevereautism@gmail.com I would love to hear from you. 

03:41

So, I did put together a list I- you know, I would have tried to do a really cool top 10 list like most people do. But honestly these things are all equally important in my opinion. So I don't really have a top 10, but I do have 10 things. So let's get started. 

03:58

I think that it would have been really nice to have a heads up about the effects of food. Now I did talk about that in one of my previous episodes, but I just grazed the surface of that we talked about gluten and casein and how that affected our son. And also we talked a little bit about the sugar and the additives in things like Mountain Dew and Doritos. However, we have found through the years that not only does sugar, dairy and gluten have terrible effects on our son but also all of the dyes the FD and C red number 40 and yellow 40 and PEG 40, and blue and all of those dyes are terrible. They- if you research them, which is what we've had to do because of all of the hell we've been through with our kid- you research these dyes and you'll find that they're linked to emotional and behavioral issues. They do not help emotional and behavioral issues, they are linked to and probably contributing to those issues. So, it would have been nice to know that instead of having to do years and years of research. Also chemicals, the preservatives and all that jazz that's in food that our family no longer eats anyway. But you know, it's just nice to know because if you place your child with a trusted individual or any amount of time that person is going to probably treat your child to something yummy. And it's really nice to know beforehand so that you can say please do not give my child this stuff because you don't have to deal with the repercussions, I do. So that would have been really nice. 

05:32

Another nice heads up would have been about the toxicity of media for a child with severe autism. Now, I know a lot of parents out there rely on media, we rely on our iPads and tablets and smartphones to keep these kids happy and entertained. But, we learned the hard way that our son was not actually happy using these items having access to YouTube and any kind of video he wanted to watch in the world. He wasn't actually happy. It caused a great deal of stress for all of us involved. And it took us many years to realize that media is toxic for our child. It would have been really nice to know that it can affect the child's brain and emotions in the way that it actually does. The way that we have found. Over all of these years, we finally figured it out. It would have been really nice for some expert to have told us that so that we wouldn't have allowed it to have such a presence in his life. And I know I mentioned in the past that we detoxed him. And I will of course go into detail in some other episode. But since I try to keep these episodes short for all of us, because we're also stinkin busy, I won't go into details now. 

06:43

But another thing that would have been nice to know, that it would have been perfectly acceptable for a professional to tell us, is the severity of the autism that we're dealing with. We had no idea that our child had severe autism, it was the only autism that we knew. We weren't exposed to any other kids. Believe it or not, as rampant as this stuff is, you know, we didn't know. We just thought this is it. This is our life. And we didn't know any better. And once we finally found a teen autism group, we realized that our son is way more than just autistic. I mean, He's severely autistic, and we didn't know. But he's shunned from everything because the autism that the world thinks exists and the autism that exists within our child are completely different. And it would have been nice for some expert out there to tell us your child has severe autism, your child will not be allowed to participate in regular teen autism parties and activities and your child is not going to be welcomed at any event, no professional or autism whisperer or anyone else in the field is going to want to deal with your child. That would have been nice to know. But we never knew until we met others and realized how unique our son was to that group. These kids who have autism and can talk and can have jobs and you know, go to school and ride bikes home and all this kind of stuff...like I said, in our household that's not autism. What our son has is autism, but guess what, it's severe, we didn't know. 

08:19

Okay, so another thing that would have been nice to know is that schools won't cooperate with our son's needs and with our requirements for helping our son through his day, and that we would need to seek out a child advocate and attorney to go to the schools and fight for him. We didn't know that. We had to learn the hard way. Hopefully, someone out there is hearing this, you can get on this, start researching it now. Get your child an advocate and or attorney who can help you through the school system, because if you're the kind who's tired of fighting, or you're not much of a fighter, or you're not much of a bulldog, and you don't have it in you, the schools-they absolutely will exploit that weakness and they will do everything they can just like a child to get around the rules. So get yourself an advocate for your child. 

09:07

Another thing that would have been nice to have a forewarning of is that I might need to learn restraint techniques. I didn't even know that there were restraint techniques until I found out from the last school he went to. They said oh well he did this and he did that, and we restrained him. I said how did you restrain him? What does that mean? And they didn't really have answers and I felt really stupid because I should know that. I should know what other people are capable of doing to my child in my absence. And I didn't realize, like I said, that he was so severe. I didn't realize that he was going to need to be restrained by strangers in a public school. That makes no sense to me. So that would have been nice to know. I still don't know. I don't know how to defend myself against my child. I don't ever want to hurt him but he hurts me. And I don't ever want anyone else to hurt him. But I don't know what their intentions are, I just know that he gets out of control. And maybe restraint is a necessary thing. But no one ever taught it, it should be a class. They should say, Hey, your child has autism, not only is it autism, it's severe autism. And with severe autism comes some violent behaviors. And so as a favor to you, small, tiny lady parent, we're going to offer you free classes on how to restrain your child keep him from hurting himself and others. That would have been a great service. If you're hearing this now and you haven't yet experienced the violent outburst from your child, please start now seek help to learn proper restraint techniques, because the child is going to need it. You're going to need it, you're going to find yourself thinking that you need a taser and that you need a guard because you can't turn your back because your child is gonna try to kill you. That's where I'm at. That's where I've been. And it's not fair. All they had to do was say, hey, this violent behavior is gonna happen and we believe that you could benefit from learning exactly what to do when a child attacks you or others or even himself. That would have been nice to know.

11:10

Something else that would have been useful to know for prior to it happening is the hell of puberty. Our son's behavior with puberty started around 11 or 12. And I recognized it right away. I said, Oh, okay, you're beginning puberty. But guess what? That was like a pre-puberty. The hell of puberty actually started around when he was 14 and lasted all the way up until he turned 21. And I think that without the pharmaceuticals that I mentioned in one of my previous episodes, he may still be going through it. And that's... with the hell of this puberty, I know that it's not just him. It's not just that he's a male. I know from talking to other parents that it also happens with female children. And it is absolute destruction of everything in your life, including yourself and your child. It's hell on earth. And no one has a warning of that in the severe autism world. I'm warning you now if your child is under 14, start to get prepared. Start to find someone who will teach you restraint techniques for special needs people, or - I don't even know what they would call it out there in the world because I haven't gotten it. But try to find it because you're going to need it. And you're going to need to think about protecting your house, you need to think about Plexiglas instead of glass on Windows. You need to think about perhaps mounting some gymnastic mats on your walls, instead of having a nicely finished dry-walled house. You're going to lose those walls, you're going to lose those windows. You might have to look into steel doors, because your regular doors will get splintered, and they'll just be broken. Everything that you value in your home. I know you know objects are only so valuable love and peace and all that is more valuable. I believe that too. But you don't want to look around your house and see nothing but holes in your walls and shit stains on your floors and nothing beautiful because your child has destroyed everything. That comes with puberty and you're looking at early onset about 12 but generally around 14. So if no one ever told you that before, which they probably didn't, I'm telling you now. Start making preparations for that and plans. And now, this also includes financial stability, you've got to put some money away because they're going to bleed you dry with all of this destruction. 

12:15

We wish someone would have told us that we have to safeguard our own mental health. All the stuff I just talked about. Is it making you feel uneasy and maybe a little panicked? Yeah, probably. I feel that way. So it would have been nice for a professional who knows more about severe autism than I do to tell me hey, your life's gonna get hard, you're gonna feel unsafe, you're gonna feel weak, you're gonna feel inadequate, you're gonna feel alone. It would have been nice. So another fair warning to you - figure out things now. Start - find a therapist or someone. Write these things down that I told you and take this to a therapist and tell them - I am expecting this to happen in my life, and no, I'm not crazy. It's just the hand I've been dealt with my child having severe autism. This happens to every single severe autism household. I am trying to get ahead of it. Give me some tools to deal with these problems. I am expecting to be emotionally and psychologically and physically abused, I'm expecting that my child is going to ruin my home and I need you to give me some tools to help safeguard my sanity so that I can get through this life and just get through the rough period because it does get better but boy, is it rough. You got to get through it and you need help. 

14:39

Next, I really wish that I would have known without having to do the research myself, which of course, I did - that when the child turns 15, not only will we be in deep deep hell with the behaviors because of puberty but the child more than likely will lose his skills. Doesn't matter, boy or girl, the child - it's documented, you can find reports on it, they expect your child to lose skills and regress starting at 15 years old. And no matter how many words the child has in the vocabulary, they're all going to go away. No matter how good your child has gotten at anything, wiping down a table, setting the table, tying his shoes, or wiping dishes in the sink or brushing his teeth, or putting on a belt or understanding the difference between a shirt and socks - all of that is out the window at 15. And overnight, it's devastating. I wish someone would have told me he would completely lose his skills, he would completely lose all joy that he ever showed for his life. And when family came around, they would see that and blame me. Oh, what an evil stepmom. She must treat him like shit. This kid is just crying all the time. That's all he ever does, just slam his head on the sidewalk and cry. And he just doesn't like anything. And he can't talk. He doesn't have any words. Six months ago, he had 100 words in his vocabulary. Now all he does is make weird noises and act like he doesn't understand anything. And I can't get him to do anything. Oh, it must be her fault. It must be dad's fault. It's the parenting. It's not anything else, but just the parenting. I'm gonna blame the parents. And I'm also going to walk away and never help the parents again, because I don't understand what's going on in this household. And I think the parents are evil. That is what you're looking forward to when your child becomes 15. And no one in the family wants to hang out with you or your child anymore, because they can't relate. It's not cute. It's not fun anymore. So you're going to be alone, you're going to have no help and your child is going to be a complete psychopath. Sounds fun? I wish someone would have told us that. And it's not, ya know, it's not just me. My spouse. and I both wish someone would have told us that because it is so scary to wake up one day and find that all your child can do is make weird noises and doesn't have any words, and he can't do anything for himself anymore. And you're just left wondering where you failed, you didn't fail. It's part of severe autism. And it starts at 15. You're welcome. 

16:54

I've got two more things to share with you. I wish I would have known that all of the things I just mentioned, would lead to a complete reversal in everything that we ever planned in our lives. My spouse and I realized that I was pretty good at being the full time caregiver for our son and that my spouse was really good at going out and making the sales that we needed to support our expensive lifestyle with the foods and the activities and all of that. And we had it perfectly planned out that I would still help run the business, he would still go out and make the sales. But once my child turned 18, I would be paid by the state that we lived in as his designated caregiver. And I was going to make more than I had before because I wasn't paid I was just a mom. But once the child is 18, now being a mom, you can get paid to continue to be the mom. And we had it all planned out, you know, we were going to be knocking down all kinds of money, we had our savings all planned out, we had everything planned out. And then all of these things I just mentioned happened. And it required a complete role reversal. I wish I would have known because now my spouse is stuck at home. He is not a Mr. Mom, he does not have the skills that I have to keep the household running, keep the lawn in order, keep the child happy, fed, and you know all of that. All he can do is take care of the kid because the kid is so much work. But it's so much that I was not able to deal with it myself. I'm not strong enough, I'm not big enough, I'm not domineering enough. Since the change of puberty, he still does not care or respect me at all. So, before the role reversal, we almost split up because it got so bad with me getting beat up by my kid while my spouse was out working, he would come home, the kid would be good and sweet and fine. And I had no proof that the child had been torturing me all day. And it went on every day, six days a week and my spouse said I was hard to be around. He couldn't stand to be around me. And he had to leave and I wouldn't even get a break because he couldn't be here. Well finally, we ended up realizing that my spouse couldn't leave anymore. I had to leave the home and find a job and he had to stay home and do the momming. And I just - I just wish we would have known because it's a complete financial lifestyle change. It's a complete kick in the gut, you know, you expect to have a double income household and I mean, you get paid the same as a health care worker. So I think in this state, it's like $17 An hour right now which isn't great, but it's not bad. It's better than nothing, you know? But now I have my own issues and I'm only able to work part time. So I'm working part time outside of the house ,my spouse works full time and we still don't make as much money as he would have made being out there selling products like he used to. So both of us are working, double income, still not as much money as we used to have and this is the rest of our lives. This is what we're looking at. 

19:49

And here's the final thing. To me, this really feels like the most important thing of all. My greatest piece of advice that anyone could have given me, that no one ever gave us, and that I am giving you now - especially if your child is under 15 years old is - write this down - DO IT NOW. Whatever it is, whatever you aspire to be, whatever dreams you have - and let's talk about that - you're either looking at building a career, climbing a corporate ladder, opening your own business, buying a wonderful home. Or you might be looking to the future-future, which would be retiring with your sweetheart living the empty-nester's lifestyle, traveling the world once you're retired with your soulmate, doing all of these beautiful, romantic fun things together because you're empty-nesters, you've done your job, you've got adult kids, they're out in the world moving and shaking the way they need to, and you're all done. And it's your time to enjoy your life. That's not going to happen, Okay? Do it now. Choose one thing or choose all of those things, but do it while your child is young. While your child is still resilient and still tolerant of your bullshit. Do it while your relatives and friends like to hang out with your child, they still think that all of your child's quirks and antics and sounds and all of that are cute and adorable and fun and cuddly. And you can still leave your child with other people and know that he's going to be safe and everyone's going to be happy. Do that stuff now, as much of it as you can. Because once 14-15 years old hits, nobody wants to help you. Nobody wants to watch your child, you wouldn't want to leave your child with anybody either. Because no one understands. That change is overnight and it's night and day. And there's nothing that you can do about it and no one in your life is going to understand the new child that has emerged from the bedroom on the day that it all happens. No one's going to help. So have your fun now, take your Romantic Vacations now. Travel the world now. Go to Disney World with your child now. Do it now because life is gonna suck after 15. 

21:49

Right now our child is on meds, he's doing much better, but life still sucks. Okay, I've accepted the fact that we are now the Three Amigos or the Three Musketeers, whatever you want to say we've always got a third wheel there is no just the two of us. My spouse and I are trying to get married. We umm,  we're eloping because it's just easier and cheaper. And we don't really care. We're just - we just want to get married. But guess what, we can't have a honeymoon. I keep looking at these resorts, you know, well, maybe we'll use our taxes and we'll just treat ourselves to a nice couple of days away. Oh, look at that romantic horseback ride and a picnic in the field or whatever. And oh, a romantic dinner cruise or oh, this romantic cozy cabin with a heart shaped hot tub and a fireplace and all this privacy and oh, it all sounds so great. Wouldn't it be great? Oh, let's do this. Oh, wait, I can't do any of that. Because my son is going to be there as well. I keep forgetting. It's not romantic when you have a 22 year old who behaves like a five year old right up your ass, all day, every day. There is no romantic honeymoon. There's nothing, nothing at all. We can't afford to find an aide who would travel with us and get them another room and do all this. You know, there's no way there's just no way to facilitate any of that. So there is nothing. Do it now, do everything that you ever thought you'd would do in your life for fun and enjoyment and romance or whatever. Do it now, do it as much as you can balls to the wall. Go. Do it right now. You're going to lose your chance if you don't. 

23:27

I know this was kind of a doom and gloom episode and I apologize. But it's real world stuff. This is what I'm talking about parenting severe autism is so hard. I hope that this helps you, if you know anyone who is also parenting severe autism, please show them this episode, put this on their timeline, send it to them on their phone, whatever it takes, get this message out to people because the professionals in the medical world either don't know (but I know that they do), or they don't care enough to tell you or they just don't think about it. And there is no education on any of this stuff. But it's important to know, it's important to be prepared. You don't want to be blindsided at every turn right? You remember how you felt when you found out your child had severe autism or autism in general? You don't want to feel like that at every single turn, do you? You don't want to be surprised every single time something else happens right? 

24:23

So, those were the most devastating things in our lives. That's why I shared them with you. Listen to it, write it down, make a plan. Be your own best friend, your own advocate but you gotta do it. Otherwise you're going to be depressed and frustrated and inadequate-feeling all the time and you don't deserve that. You deserve to live. Yes, our children deserve to enjoy life as well. But you deserve to live. Figure it out. Do everything you can to enjoy your life because the truth is no matter what you do for your child, they're always going to be severely autistic. They're always going to have the 

25:00

problems that they have. YOU move beyond that, you have other possibilities in your life, you need to recognize that, take hold of that, take the reins, go in a direction and Damn the torpedoes. Okay? Just find something that makes you happy in your life and do it as long as you can, as hard as you can have as much fun as you can. And even when everything gets crazy and shit hits the fan, after 15 years old, try to hang on to a piece of what makes you who you are, hang on to it and run with it if you can. Do not allow this severe autism to rule your life. You deserve to enjoy your life, make sure that you make an effort to do that, do not allow that severe autism to take full control. It'll still be there when you get back from doing whatever it is that you like, believe me. 

25:49

Hey, thanks for listening. I know you're out of time. I've been out of time for about 15 minutes, and I'm so sorry. I promise, if you're interested in learning any more, just send me an email, I will definitely elaborate per your request. But throughout all these episodes, I'm sure I'll hit on every single one of the subjects I just mentioned in more detail. And I do try to keep these down to about 20 minutes for you. I know you're super busy. You're doing a great job out there. 

26:15

Next episode. I really think I want to talk about school your kids have been in school now for about a month or so. And you're probably going to be running into the problems that we always run into after the first 30 days or so of school. Everything's great and then everything's not great and we don't know why- We'll talk about it. Thanks again for listening. Please feel free to visit my website psa.buzzsprout.com You can click the link to support the show and buy me a coffee for as little as $1. A portion of those proceeds of course will go towards helping others severe autism families in need of safety and sensory items that they cannot afford otherwise. You hang in there. You're a superhero