EP.41. Navigating the Complex Terrain of Parenting: Severe Autism, Homeschooling, and Healing Journeys

Misunderstandings with family, self-harming incidents, and heartbreaking decisions mark the emotional terrain of parenting a child with severe autism. Picture a moment where miscommunication with my son’s grandmother unravels, highlighting the delicate dance of maintaining family ties amidst the unique challenges of special needs parenting. I share a poignant story of a self-harming episode that led to the wrenching choice of withholding favorite treats—a testament to the ongoing struggle of balancing discipline with compassion.

Traditional schooling was a battlefield that left our child unhappy and unsupported, pushing us toward the road less traveled: homeschooling. With emotional and logistical hurdles at every turn, we navigated through a frustrating lack of support from the school system to create a nurturing learning environment at home. From setting up structured schedules to integrating therapeutic support, we focused on tailoring educational experiences to honor our child's individuality and fostering a positive atmosphere where he could thrive.

Through a non-schooling approach, we embraced the healing potential of nature and autonomy, allowing our son to explore life beyond structured education. Activities like riding a four-wheeler became symbols of freedom and joy, respecting his choices and supporting his journey toward comfort and healing. Amidst all this, we tackled the

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Chapters

• 0:19 Parenting Severe Autism Podcast Update
• 10:30 Exploring Non-Schooling as an Alternative
• 18:51 Autistic Child Outdoor Unschooling and Exploration
• 28:24 Medication Adjustments for Severe Autism

Transcript

Shannon Chamberlin: 0:19

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. Please forgive my voice. I woke up with a scratchy throat. Hopefully we can get through this without me hurting your ears too much. I prefer to read the transcript, and you can't find the transcript on your hosting platform. You can always head over to psabuzzsproutcom where you'll find my transcript, show notes, links to recommended products and also some podcast merchandise. I've got some coffee cups, water bottles and stickers and stuff like that available. If you'd like to support the podcast or if you'd like to point someone else in this direction, you can also buy me a coffee. A portion of the proceeds will go into an account to help another severe autism family in need who cannot afford the specialty therapy items, food items or other means of support for their loved one. So let's get into this.

Shannon Chamberlin: 1:17

If you ever thought I was blowing things out of proportion when I said that people look at my child and treat my child as if he's an alien, here's a little story for you. After the bad dream episode I told you about last time, we had another day when we woke up and his grandfather says hey, I think Jacob has been awake since like four in the morning. He was being very loud in his room and he never came out, but he was making a lot of noise and kind of yelling and stuff. I think he dreams and that is not from an outsider, that is very much from an insider, someone who's in the house all the time around our son constantly. So there you go.

Shannon Chamberlin: 1:59

Shortly after that my spouse and son were out there in the driveway. The grandmother walks up to my spouse and says hi, what does Jacob want for his birthday? As you know, we're not really on great terms with her. So my spouse says I don't know, ask him. She just walks right up to Jacob and doesn't even bother trying to condition him or do any of the regular things to get him ready to answer such a question. And she just goes up to him and says hey, what do you want for your birthday? So he instantly starts singing the happy birthday song in his out of tune way and that was her answer. She's only been out of the house for like I don't know, four or five years and she had plenty of opportunity to get to know him and to stay in contact with him and learn all about him, and that's how she approaches him. She also stops by and drops presents off for him I'm pretty sure it's her and we just find them sitting on the table. No introduction, no, nothing, you know. And of course my son's not going to play with anything and I have made the request to stop doing that and just come over and play with him with the things you've already gotten him. Stop buying him stuff because he doesn't use it. He needs assistance with everything. He does not play on his own. He wants to play with you. So there's that.

Shannon Chamberlin: 3:20

But within one or two days after that event of her stopping by, he had another serious self-harming incident, shortly after my last episode. I gave him a bath, he was fine. He was a little irritated, but that's why I put him in the bath and I let him calm down. He was very happy with the temperature of the water. He was very chill, put him in bed, everything was fine. He was actually happy, or so it seemed.

Shannon Chamberlin: 3:45

And then the next morning would have been Wednesday that's the day that we go to get our specialty food items on discount at the store and we were getting the whole conversation going and, you know, setting the stage for him to go on his special mission and get his food items, and I noticed it's a little dim down here, you know, so it took me a minute to focus on him and to really notice, but I noticed that half of his forehead looked like he had been hit with a board. It was like purple and really full of petechia all over the place and just I was like whoa, what happened to your head? So it turns out he had a severe scratching incident after we had put him to bed and I don't know when that would have happened. I guess I've been sleeping pretty soundly, but he was just he - Like I said, he doesn't have any nails, so he has to push really hard to do the kind of damage that he did to his head. And after pushing so hard to get the petechia from the scratches, I think that the pressure that he put on his skin turned his entire half of his forehead purple and it looked flat. I mean, it really looked like he got clobbered with a board. So we decided, hey, you're not going to the store, so he doesn't even have pizza, which you know.

Shannon Chamberlin: 4:55

We like getting him these specialty food items because they're treats for him, but they also make our lives a little bit easier, because every meal is cooked here, we don't use the microwave and we don't eat out, we don't get fast food or anything. So he gets a gluten-free pizza once a week and we'll treat him to little gluten-free cinnamon rolls or donuts or something like that, and that actually makes life a lot easier on us when he has those as his breakfast snack before breakfast, because he's very demanding first thing in the morning and we're just trying to buy ourselves some time to relax. So when we punish him for self-harm or destruction or anything like that, we withhold. You know you can't go to the store and get these food items, but it's always us. We're the ones that are actually suffering because he still gets fed really well. He eats like a king. But instead of opening a box of something that's as close to processed as we'll get, we have to actually cook him a full meal right away. He normally would get that full breakfast meal a couple hours later and we tied him over with something sweet and fun. But no, now we're trying to show him who's boss, and here we are having to work our asses off a couple hours earlier every day until the next day that he actually is able to go and get his specialty food items from the store. So hopefully he's good from now up until Tuesday night and that way we can take him and get him some easy breakfast items and a Saturday night dinner for next week.

Shannon Chamberlin: 6:18

It's funny how that happens. No matter what, he's really not punished, he's not suffering at all, it's just that he has to eat different foods. It's we're the ones that have to do the extra work and go the extra mile to keep him alive and make him happy. And his food turns out beautifully. By the way. I mean, if you just if you were at my house and I showed you look at this plate, you would know for sure that that was his plate. Everyone else's food can get messed up. His plate every single time is the best food in the house. It's gorgeous all the time. He is well, well fed. It snowed here the other day and it made me think of a funny little story just to share with you real quick.

Shannon Chamberlin: 6:57

When we lived in that temporary house, the school, the little town that his school was in, also had a Walmart and, as you know, he has a thing for little old ladies. He also has a thing for his reflection. So this was just a perfect scenario for him. There was a little old lady in her car, about two spots over from our Jeep, and he saw her in there with her little white hair curls and everything, and he instantly starts giggling and runs up to her car and starts flapping and stimming in her window. So now he can see her. He knows that he startled her, which gives him another kick, and he can see himself in the mirror. He'll look for himself anywhere he can in your glasses, your sunglasses, a picture on the wall, anywhere that he can see himself. So now he's making the googly face halfway at her, but also halfway, because he can see himself. So now he's making the googly face halfway at her, but also halfway, because he could see himself in her window. And it's kind of I think it's like a mind thing for him or you know some kind of a weird visual depth thing, because he can see two people, you know, looking back at him, and one of them is him and anyway it was a big thing. But I felt so bad for the little old lady, but there's nothing we could do. All we could do was stand there and snicker and try to pull him away from the car verbally and thank God she didn't have a heart attack or anything. I mean, I just feel so bad for these little old ladies when he goes and stems on them like that.

Shannon Chamberlin: 8:17

Another thing at that temporary house that I thought was really cute was that he started questioning when we would work on the whiteboard in the kitchen. He started questioning me and saying, oh, schoolhouse, schoolhouse, schoolhouse. I would say yeah, yeah, this is like school in the house, you're right, yeah. And he never minded it. He was like, okay, so we would work on touch math and we would just do stuff, you know, not just words anymore, because they sent us home with worksheets, or they sent him home with worksheets from school with the touch math problems, and he was really good at touch math. He was able to do adding and subtracting three numbers on both, so like the number 137 plus the number 245, he could do that in touch math and everyone was really excited at school about that. So apparently that was pretty good for his level of understanding things and so we would just work on that when there was some downtime, because he's not much for playing with stuff unless it's video games, so I just would have, you know, some intelligent time at the table with him and he would call it schoolhouse, schoolhouse.

Shannon Chamberlin: 9:23

That leads me into our decision that I mentioned in my last episode to pull him out of school. I thought, well we look, we knew that if a school couldn't provide for him what he needed, they were supposed to bus him to another school and foot the bill. My spouse knew that from when he was first getting our son into school I wasn't even around yet, so he knew that and I knew that because he told me the story several times. So we were aware of the responsibility the school district has to our kids. The thing was, we were just so concerned with his mental state and his well-being and his happiness that we didn't really feel comfortable with the idea of him just being shipped off to another school when the neighborhood school couldn't handle it. And we also didn't know if we would be able to convince everyone that they are not providing him with what he needs, because we don't have any proof that they're abusing him and that they're allowing him to be bullied. You know, we have the proof that they're abusing him and that they're allowing him to be bullied. You know, we have the proof that the lady said it, but we definitely don't have proof that that same lady hurt his ear in school.

Shannon Chamberlin: 10:30

We just didn't know and, to be honest, we were getting really tired of fighting for all of this. This has been going on for months now with this school and we were just tired and we were imagining all of the things that could happen. And you know, when you do that you kind of shoot yourself in the foot. But also, I think it's kind of your due diligence, it's your responsibility to think that way, right? So I don't have any regrets really about the way that we were thinking, even though when you think negative and you kind of box yourself into this oh well, I don't know if it's going to work mentality then you're pretty guaranteed that it's not going to work, you know. But with this watching him decline from being so happy and bubbly to being so broody and unhappy all the time, we were just very uncomfortable with the prospect of, oh well, you know, we'll just solve it by having them bus him to another school. I don't know, that's a lot of adjustment. We just didn't think that it was going to be the right idea.

Shannon Chamberlin: 11:23

So before we made our decision, we started researching all the options and really the only option was to homeschool him. I was able to find all of the paperwork on how to get registered to homeschool and how many hours you have to have just all the rules. So we decided to go with homeschooling and I filled out all the paperwork and we contacted the school and told them this isn't working. And we told them what happened and of course they wanted to deny the teacher hurts me ear story. And we just said look, we can't look, look at him. You don't know him otherwise, I guess. So you don't know any different. But this is not our boy and we're going to get our boy back. He's not doing well here. So we're going to homeschool him for the remainder of the year and then we'll see how it goes for next year. So they lost, you know, their little government paycheck from him and that's about the best damage we could have done to him, I guess.

Shannon Chamberlin: 12:15

So we kept him home and we started homeschooling. Well, we attempted to start homeschooling him. And at homeschool, well, we attempted to start homeschooling him. And mostly that's me, not we. Dad got involved when he could, but most of the time I would send him off to work and I would take care of the homeschooling. Jacob and I already had the rapport. This is all we've ever done, a little bit of schooling in the kitchen, in the dining room. So I thought, okay, this will be great, you know, he'll know that he's safe, he's with me, we're going to do something that we've always enjoyed together and I think this is the way to go.

Shannon Chamberlin: 12:43

And yes, we did weigh the pros and cons. The cons were that he would not receive OT and speech therapy. He was only getting like 40 minutes a month of therapy. His needs seemed to be much higher in our opinions and it just seemed like he was getting a lot less therapeutic schooling and a lot more academic schooling. It just didn't make sense for us. Anyway, you know why would you teach him all of this? What is he going to do with it? Come on, let's be real. You know that I treat him as best I can. I try to make him perform. I try to make sure that he is not copping out of things just because of his disability. I do push him and I do expect the best out of him. I expect good performance, I expect effort. So it's not like we're just boxing him in and saying well, he's disabled and he'll never do anything in life. We're just being honest with ourselves.

Shannon Chamberlin: 13:35

Before we even knew the severity of his autism, we knew that he was not grasping anything and that he would be forever on disability. You know, we just didn't understand why things were going the way they were, even if he wasn't being abused in any way at school. We just felt that the best way to teach him how to do life would be with therapy and therapeutic education, and we just didn't feel that he was getting enough of it. So we weighed all that out and we decided that, hey look, I'm just going to try to find alternatives to his therapies, because maybe we can find someone who will give him the amount of therapy that he needs. So that was a new mission.

Shannon Chamberlin: 14:16

I was on to find that, and in the meantime I got my whiteboard all ready. I modeled my home school schedule and little classroom area after the school that he liked, where everything worked well, so that it would not remind him of the school that we were pulling him out of. I thought that everything should just be brought back to a time that made sense for all of us and I knew that he was really good in his other schools. He was very happy and he did prefer a male influence. I think he always lucked out and got male gym teachers, which gave him that male influence satisfaction. He really responded well to the males, but he also enjoys women as teachers. I thought, well, you know, dad could be the male gym teacher. They could do some sport kind of stuff, you know. And I thought, hey, this was going to be great.

Shannon Chamberlin: 15:04

The whiteboard set up just like school. I made a chart for his breaks where, you know, he would do a little bit of one thing and then he would get a break, and the break he would have choice time so he could choose whether it was going to be an iPad or Xbox or quiet time or a nap or jumping on the trampoline. You know, there was just a whole list of choices and once he would choose one for his break, we would take that off of the list of choices. So he had to choose a new one each time. When he tolerated this, it worked out really well. He understood the process. He seemed to enjoy being forced into choosing new things every time instead of being allowed to choose the same thing all the time. So it seemed like everything was really going well with that when he would tolerate it.

Shannon Chamberlin: 15:53

However, he became so resistant to schooling things before we even brought him home. I mean, we didn't even realize how resistant he was to the process and the program that they had there at the school. So he refused to accept my homeschooling and I had done all this work and all this research and I got everything set up and I made time in my workday to do this for him. I was very upbeat about it and very excited to have my boy home so I could baby him and treat him the way he deserved to be treated and try to erase that abuse. Now he does not forget things.

Shannon Chamberlin: 16:31

I didn't expect him to forget the bad feelings. I just expected to bring him back to the feelings that he remembered and I thought that maybe we could outshine the bad stuff. But instead the bad stuff that he just went through at that school was overshadowing all the good stuff that we were trying to do for him in our homeschool and instead of him saying schoolhouse, schoolhouse, he said oh, schoolhouse. Then he would just start screaming at me and he would throw things and stomp. He just would melt down instantly. So I thought, well, shit, this isn't going to work. And I didn't realize that homeschooling was so unmonitored. So at first I was like shit, what am I going to do? Are they going to get me for truancy or for making him stay home and letting him be dumb? I mean, what are they going to? What's going to happen? I don't want to send him back to school. My spouse said, well, we'll just wait and see. And my spouse did see it as well. I showed it to him. Look, this is what happens when I start school. And it was just, it was bad.

Shannon Chamberlin: 17:32

So I started doing some more research. This is all I've ever done, ever since I've met Jacob, is research. So once we recognized his resistance, I started researching our alternative methods. You know what can we do and I found that there is a thing called non-schooling, and non-schooling I looked at it as a way to just kind of detox him from what he had just been through. Non-schooling, I think, is also very close to the idea of a Montessori school. These are the ways that I believe my child I think a lot of children like mine, but I'm just going to say right now, my child for sure would really respond well to this. I think it would really benefit him.

Shannon Chamberlin: 18:16

The idea behind it is to not school him obviously by the title non-schooling but to let him experience life, go get interested in whatever catches his fancy. So I thought, oh, oh, this is great, because he's so childish in his mind and maybe we should just do this and maybe we should just do it forever. I brought it up with my spouse and I explained everything to him. I suggest you know, if you're having trouble with schooling or if you're trying to homeschool, maybe look into that. It's called non-schooling and I thought this would be great.

Shannon Chamberlin: 18:51

Since it was still cold outside, we didn't do much by way of non-schooling outside yet, but we did try to take walks and we tried to be out in nature and just let him wander a little bit, because we had all that land and we did that to make sure he could wander and be safe. We were just asking him hey, do you, can you help me here? Can you do this for me and just allowing him to live life with us and function as a member of the family and not as a student? It was going okay, but really we were just trying to give him a break and we thought you know, we're going to non-school for at least the next six months just to let him detox, because when he had a bad experience with his dad in the swimming pool, he held on to that. For eight or ten years he wouldn't even be in the same swimming pool as his dad, just because of one little incident that it surprised him and he attached a bad feeling to it. So we thought, well, if this is anything like that, we need to really just lay off of him and let him live, just let him breathe, let him live, let him come to us and show us when he needs input. Whether that sounds like a good idea or not, that was what we were left with. There was no other choice. I could fight him tooth and nail every day, which is not something I'm interested in, or I could just do the non-schooling. So that was a really good decision. I thought it took a lot of pressure off me as the parent and the teacher. It took a lot of pressure off everybody.

Shannon Chamberlin: 20:16

And as soon as I was able to start working outside, I started a huge garden and I thought this is going to be great. I'm going to teach Jacob about nature and bugs and gardening and plants and food, and you know, I mean he was always my foodie. He loves watching me cook, he loves watching me with food, he loves anything to do with food. This is going to be one of our major activities as we're non-schooling. He was very pissy about the whole thing.

Shannon Chamberlin: 20:47

I tried to get him out there to plant my seedlings with me and I tried to actually introduce him to soaking the seeds and getting them to sprout indoors and I tried to, you know, just expose him to everything and he wasn't interested in anything and which is fine because in the idea of non-schooling you're not forcing the person to learn something they're not interested in and their interests may change day to day. Maybe it's just not a good day, but as long as you have stuff available for the person to go and check out you and they can learn what they are interested in and kind of build from that. So I just kept trying and I would show him about laundry and I think that's where the scary hole came in. He did really enjoy that. So that became a thing. Laundry was one of the biggest non-schooling and homeschooling activities that we had going on that he would participate in. It made his day. He enjoyed doing it, great.

Shannon Chamberlin: 21:42

Well, I thought, well, let's get him out here in the garden. I had tried in different stages of gardening and I just had some cabbages popping up Went and got him and said oh, come out here and help me, here you can. And I was just going to show him. At the time I was not a permaculturist, I didn't know anything about it. So I was going to show him how to pull weeds. And now I'm a permaculturist and I use the weeds. I don't pull the weeds. So it's a completely different method now and I did try to introduce that to him as well. However, I'm going to go back.

Shannon Chamberlin: 22:09

So, as a regular gardener, I brought him out there to look at the plants. I wanted to show him how they were growing and teach them the names and what they look like when they're babies, and you know the whole thing. I mean, there's so much that a child can learn in the garden. I just thought he would like it. I get him out there in the garden and he let me show him a cabbage head and maybe some radishes or something.

Shannon Chamberlin: 22:31

And the next thing I know he's stomping through my garden, acting as if he doesn't know where he's walking, but deliberately smashing every single vegetable that was popping up. I know it was deliberate because there was plenty of space to walk and not hurt things, so I had to yank him out of my garden. He ruined a quarter of my garden with his feet in that short amount of time, so I yanked him the hell out of there. He actually was not allowed in my garden for a very long time. After that, I just thought was not allowed in my garden for a very long time. After that, I just thought what an asshole you know. And that's when things started to really click for me that this is a different kid than I thought it was. He has changed, and I'm guessing that he's really that damaged from school. Either that or he really hates me, and he never acts like that with his dad, it's only me. So I thought, well, there's that male influence. Maybe he needs to spend some more time with dad.

Shannon Chamberlin: 23:32

Another thing that he really did enjoy, though, was riding the four-wheeler. When I met them, he was, I think, six, and he had been riding four-wheelers for years. So this whole family, they have dirt bikes and four-wheelers, so he always rode a four, four wheeler, despite the noise and everything. He was just used to it. He was riding them before he was diagnosed with autism, I think and then he was riding them after. So we had a big four wheeler and we started allowing him to ride with dad on there and eventually it didn't take too long really. He started driving it himself and we would allow him to ride the four-wheeler up and down the driveway and on some trails that we had right where we could see him, and he really enjoyed that. So that was his main thing that he would do. He would not participate in life at all, but if he could ride that four-wheeler he would, and it was amazing.

Shannon Chamberlin: 24:24

He has such an understanding of driving and fitting things into spots. I don't know about you, but I am terrible at that, honestly. If I'm outside of the car, I can look at the car I'm getting ready to drive and say, oh yeah, I can swing that right in there, that's no problem. And then I get in the car and everything looks different and I don't believe I can put that car in that spot. But Jacob is amazing. He will be on that four-wheeler and he'll just look like he's not even really calculating anything at all and he will park that four-wheeler in the tightest spot perfectly. He never bumps into anything. He never, ever has any kind of accident. He sees a spot he knows he's going to fit and he'll just put it right there. It's really cool to watch him with things like that. He's very good with shooting targets and with driving four wheelers.

Shannon Chamberlin: 25:11

I did have a dream one time, when we were in our townhouse, that he was driving our Suburban. He would have been about 10 and I was so scared in my dream and I woke up. I was like, oh my gosh, jacob was driving himself to school in the Suburban in my dream and I am so freaked out and we just thought that was so funny. And then he ends up driving himself around on a four wheeler. So I don't know. So that is how the homeschooling got started at our house. We went from homeschooling to non-schooling and we supported the non-schooling lifestyle, because it really is just life. It's life, we know. We were just trying to involve him in life and let him decompress and detox all the negativity that he had build up on him in that school situation. And boy, does it get interesting after that. Let me tell you.

Shannon Chamberlin: 26:00

Just the other day, though, I sewed my first mattress back together and he has a MyPillow too. I sewed a MyPillow and a mattress back together. He has a full size mattress and it had about a two inch tear in the top of it and I thought, oh. So I told him don't touch that, leave it alone, let me fix it. And then, as you know, 20 years later I got around to fixing it. But by the time I got my needle and thread up to his room it was across almost the entire mattress. So I stood there. I don't know how long it took me, but what was really interesting is I took a length of thread on the needle and I thought I was going to do just this little two or three inch patch and I take this whole really long, ridiculously long length of thread in my needle up to his room. And then I see what has happened and he got mad at me that I got mad at him and made him clean up all the foam. He was acting like he didn't know how and like I didn't know what I was talking about. Anyway, it just happened that I had just enough thread to sew the full mattress and the pillow and then, on my last pull through on that pillow, the thread snapped right off the needle. I thought that was pretty amazing, go me.

Shannon Chamberlin: 27:20

And now he hasn't slept with a fitted sheet or a pillowcase for many years because he just won't have it. I had those little clips on it to keep it, keep the fitted sheet on there, and he just he was not having it. So I had to remove the sheets and the pillowcases from his room for what I thought was going to be forever. And now we told him leave that on there, don't take it off. I did not put the straps on there to hold the sheet down and I used a pillow sham. Not an actual pillowcase, which would be a lot. I would think it'd be a lot easier to just decide to pop off of there. But he's left them on. It's been since Wednesday, I believe, so today's Saturday. I'm really impressed he's left everything alone and he's sleeping just fine, and you never know.

Shannon Chamberlin: 28:09

Also, we got his meds upped. So I talked to his doctor yesterday and she increased his sertraline by a half. So he was on sertraline, which I guess is also known as Zoloft. He was on a 50 milligram dose of that in the morning along with his risperidone. Now we're going to be taking 75 milligrams in the morning.

Shannon Chamberlin: 28:24

She wanted to up the risperidone first, but she said that you know. I said, well, what should I be looking out for? She said, well, extreme drowsiness. And I had just told her that he's been doing nothing but sleep in his room. If he can't eat, he sleeps. And I was concerned about it. So I was like, well, okay, well, if that's the side effect risk that I'm looking for and he's already sleeping all the time, or pretending to, I would maybe like to avoid that, if that makes any sense to you. And she says, oh well, let's just, let's just increase the sertraline then instead. Oh, great idea. So we're going to try that.

Shannon Chamberlin: 28:55

Tomorrow will be the first day that we're able to give him that dose. And, of course, ever since I mentioned that to her, he has not wanted cannabis and he has not indicated that he's got the issues that he had that I told the doctor about. So it's very strange how that happens, but I'm sure it's just a fluke and we'll get him figured out with this Sertraline. So that's supposed to help with his extreme anxiety and with the fits and the scratching and the biting and all of that kind of stuff. It should help. I guess I can feel my voice wanting to give out and I'm not going to make you suffer through a frog on here, so it is time for me to go. I hope that you'll come back next week and hear my next episode. You hang in there, you're a superhero.