EP.42. Empowering Choices and Building Support: An Unconventional Journey Through Severe Autism Parenting

Imagine navigating a world where words are scarce, but choices abound. Join me on a profound journey with my son Jacob, who has severe autism, as I unravel the intricacies of parenting beyond the conventional. Discover how we respect Jacob's autonomy through simple yet powerful acts like letting him choose whether to attend school, and explore the enchanting world of outdoor adventures that help him connect with the environment and conquer his fears, including his initial aversion to bugs. Delight in the whimsical world of Jacob's imagination as he bestows flowers with unexpected names, reminding us all of the small joys that punctuate our unique path.

The adventure doesn’t stop there. Building a support network has been crucial, and I share how a pivotal relationship with a state-level caseworker opened doors to invaluable programs like the Katie Beckett program, all while offering emotional and logistical support. Experience a touching moment when Jacob uses words to express his desires, showing the power of persistence and open communication. Finally, revel in the joy of our family’s cherished "beat downs" with socks—a quirky tradition that never fails to light up Jacob's world. Through gratitude and laughter, we navigate this complex journey of parenting with severe autism, inviting you to connect and find inspiration in our story.

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Transcript

Speaker 1 0:23

Hello and welcome to the Parenting Severe Autism Podcast. I am your host, shannon Chamberlain. I'm so happy that you're here with me today. Remember that you can view the transcript over at psabuzzsproutcom. You can also find links to support the show through the Buy Me a Coffee program or purchasing merchandise which is just like cups and glasses and water bottles and pillows and stuff like that, and you'll find all of the information for contacting me via email or Facebook. And a portion of the proceeds through purchases and donations are going into a fund to help other severe autism families just like ours and yours. So let's get started.

Speaker 1 1:05

I'd like to start out by noting that we always gave Jacob the chance to make his own decision whether he wanted to go to school or stay home. We would just ask him every day would you like to go to school or would you like to stay home? It was always a decision that he could make, and I do think that's important, because he doesn't have the words, he's not really able to tell us, and maybe, maybe he would want to go to school Even if he was miserable. Maybe he liked it, we don't know. It could have been something else bothering him, you know. So we just always wanted to give him that opportunity, no matter what the situation. He never did choose to go back to school. We kept him out of school for a year and a half it was basically the remainder of the year and then the next full school year and then the year after that he decided that, yes, he was ready to go back to school now. So it took him one and a half school years to detox and rebuild himself inside before he felt ready to go back to school.

Speaker 1 2:02

Now, although the gardening didn't quite go over with him, we always did have fun outside and on walks. So I tried to draw from that. I knew that he was kind of afraid of bugs. He would just freak out oh bug, bug. So I didn't want him to be afraid of bugs. I just thought, well, maybe the way I look at it is, I used to be afraid of bugs, but then I studied bugs and I learned about bugs and now I'm not afraid of bugs, I appreciate them very much. So I just wanted to give him a little bit of power so that he felt a little more in control of his environment, whether there were bugs around him or not. So I would tell him it's okay, the bugs are fine, don't worry about them. And I would pick up, you know, something nice like get a ladybug or something like that. I think I tried it like a cabbage worm. Yes, I did. Now I remember when I gave him the ladybug, after showing him that the bug was okay, he instantly just killed it and picked it apart, tore its wings off. Then I showed him the cabbage worms in the garden and he did the same thing he squished them. Well, that's exactly what we wanted to do with those cabbage worms anyway. So he did help us with that, with the squishing fingers.

Speaker 1 3:10

But my best memory of trying to teach him things outside in nature was that spring the flowers were coming up and I had always worked with him on flowers and I'd always told him the daffodils and the tulips, they're the first ones to come up. So I would always, wherever we were, I would bring him over to the daffodils. Look, these are daffodils, they're the first flower that come up in the spring, and then tulips are next. So we didn't know what was growing in our yard. We hadn't seen this part of the season yet. So we were pleasantly surprised to see all these beautiful flowers starting to bloom in the spring.

Speaker 1 3:42

Excitedly, I brought him over to the only two that he would ever know, because they're the only two I ever introduced him to, and I showed him the cutest little white and yellow daffodils and he seemed very happy that day. He was smiling at the flowers. I always asked him the color and things like that, of everything on our walks. So of course I asked him what color is this? Do you remember what they are? And he didn't. He's just looking at me with a smile. And so I said they're D D, d. It starts with a D D. And he said Dick. I said no, where would you get that from? And then the tulips were up at the same time in this yard, as a matter of fact. So I brought him over to the tulips and I've always thought that they smell like Hawaiian punch. So I showed him how to smell the tulips and I hoped that he was enjoying that scent.

Speaker 1 4:33

He's not really understanding at that point how to inhale through his nose. He didn't really understand smelling yet, but I tried, and so I said what color is that? Does that smell like candy? And we just tried to have a little conversation about it. Do you know what it's called. And he of course he did not. So I said it starts with a T, it's T, t he says tit. I did not teach him these things, but that's what my son's vocabulary was at the time Dick and tit for daffodil and tulip. I was so proud it really was funny and he was funny about it too. He actually held onto that for the next couple of years and he remembered that they were called dick and tit flowers, even though he knew that that was not right. So that was my first attempt.

Speaker 1 5:22

All of that outdoor stuff was my first attempt at non-schooling. You know, we had always been pretty screwed regarding additional support for Jacob to have any kind of therapeutic items at home or get professional recommendations or additional therapies and things. The school was always saying, oh, maybe you should just have more therapy at home if you don't think we provide enough therapy. So we of course had been looking into that. Now he's not in school. So then I'm like, well, what am I supposed to do now? And there really were no systems put in place that we were aware of to help our child because of our income level with our business, even though we went and got incorporated and everything we tried to pay ourselves modestly, but it was still not modest enough and they were able to withhold any kind of aid or benefits from him.

Building a Support Network for Autism

Speaker 1 6:13

Well, the deeper I dug, I was able to find something called the Katie Beckett Fund or Program or Law, whatever it was it was Katie Beckett. It was so important. The Katie Beckett is a program which is financial support for children with complex disabilities or medical needs, for those who are ineligible due to their parents' level of income. So I thought, wow, that's perfect. So I started calling the state, because that's who you're going to start with when you need any kind of welfare support. You'll call your state and usually the Department of Public Health or Human Services or something like that. And that's where he had his disability insurance through anyway. So I just called them and I ended up with a really nice contact. I still remember her and I encourage you, if you're not on this path yet, call your state and be friendly with them. It's going to help you out in the long run. They will remember you and when good things are getting ready to happen, you will be at the top of their list or at the forefront of their mind. When something comes, they'll say oh, I know who to call about this.

Speaker 1 7:21

I just formed a relationship with this lady at the state level who you know normally would help you process your requests for assistance, and she informed me at the time that there was nothing. And then I found the Katie Beckett program and I called her back and I was still very nice to her, even though I felt that she should have known about this and she should have told me. I still was very nice to her. And she said Illinois and I'm pretty sure it was 30 years in Wisconsin. It was forever and maybe it was 10, but it seemed like 30. It was forever.

Speaker 1 8:03

I spoke with this lady all the time. I would keep her updated with Jacob's behaviors and just tell her how desperate I was. I could really use some help. Is there anything available? Yet I know we're at the bottom of the list. Is there anything that? Yet I know we're at the bottom of the list? Is there anything that you can recommend? Are there any other programs or companies that you think I could work with?

Speaker 1 8:22

And I just would call her at least once a week and check in with her and my story being so honest about Jacob, and she could hear it in the background sometimes, and I would tell her things that she had no business really even knowing because they were personal, but it helped a lot, you know, just telling her the toll it was taking on me and how sick it was making me, the things that I had to worry about and deal with, and how I wasn't able to work all of the hours on our job that I needed to work because he wasn't allowing me to. You know, my workday went from eight hours of work at home to probably three that were actually productive, and it was just because he just wouldn't allow me, and I'll tell you more about that another time. But I would tell her all of these things. You know I haven't been able to take a shower for these many days, or whatever it was, and really, though, it was the emotional toll that it was taking and I would just tell her these things and she would actually call me and ask me how was I doing? It was really nice to have someone who kind of gave a shit. You know, she did point me in the direction of a couple of other services, so we started getting in contact with these other people and anytime that she would learn about something that was for autism or special needs. She would call me. So I highly recommend that.

Speaker 1 9:40

It does seem like everyone's against us out there, but if you can get a caseworker on your case at the state level and just bond with them, let them know things that they really otherwise would never really even be able to ask you, just tell them things you know, make a friend at that level. I think it's really helpful and it's kind of free counseling for you. But this Katie Beckett was a waiting list at the time and while I was waiting I was able to have him evaluated for some other programs. In my next episode on this subject I want to share in detail with you the intake process for these other programs, so I'm not going to mention them right now. I'll wait until the next one so that I can give you all this information, and I'm going to give you some really detailed information. Hopefully it helps you. If you have not been through this, you'll have some outline of how things are supposed to go and what you can expect. If you have to go through this, and it was so helpful to me that I hope you have to go through it because it will help you once you get through the evaluations and all that intake crap.

Speaker 1 10:45

Last week he surprised me with some more actions. So most recently he's been using words deliberately, really trying to form his words. Now you know he's wrapping his lips around his teeth and he knows that I hate that and I'm always on him about it. But he also knows, I think, when he just there's no way to understand what he's saying, it's just ridiculous. But sometimes I'll catch him catching himself like whoa, that was really bad. I'm surprised you're not yelling at me right now, you know. But yes, he is trying to use more words deliberately and, as you know, he's been spending a lot of time in bed.

Speaker 1 11:20

The other day I was floored, I wasn't there. His dad told me later that he said he wants to go to Caroline, and that's the name of the tiny little town that we lived in in Wisconsin and on all this land that it seemed like he never appreciated. And now he's telling his dad very specifically that that's where he wants to go because, as you know, he's been telling us he wants to go home. We've been letting him know that this is home. So now he's saying I want to go Caroline. I was just floored by that. Also, he asked us last Saturday whose tomorrow is and that he always will ask. And he confirmed that the next day was Sunday. And once he was sure that right now is Saturday and tomorrow is Sunday, he confirmed that he would be good. He said just be good, and we don't want scratching, we do not want scratching faces, we do not want scratching faces. And I was like, well, right, that's very good, thank you for getting ready to be good tomorrow, on Sunday. That's awesome. And he kept saying we do not want scratching faces.

Speaker 1 12:16

Then a few minutes later he sticks his head out a little bit more towards me to show me his face and he says bath and shave mustache. These are very deliberate words. Normally I would not hear this from him at all. He would say look and point at his face, but he's really working to communicate lately and I'm really proud of it. So, bath and shave mustache. It was almost as if it were his condition to be good. You know like I'm going to be good. I know we don't want me to scratch my face, but you need to give me a bath and a shave or you're in for it. So we promised that he would get his bath and shave. I think he even got it Saturday night.

Speaker 1 12:56

I think his dad stayed home and shaved him that Saturday. He also kind of made me giggle because I wear contacts and I had just switched to a new pair and they come in, those little disposable plastic foil covered things and I had left it on a chair that's down here and he came in to sit down and he says oh, and he picks it up and he tells his dad I got eye, look, I got eye. I thought that was really cute because we've never talked about what that is. I do say that I need to take my eyes out or put my eyes in. I was really impressed with his observational skills right then. I never expected that he would know and he did tell me no to medicine candy. I might have mentioned that in the last one, but I'm still floored by that. There's been just a couple times where he just hasn't wanted it lately. I want to mention that tomorrow I'll be interviewing my spouse. We're going to have fun with this episode. I've got a nice list of questions and it may become a little series. If you guys are interested, we can ask Dad's perspective on things instead of always hearing just mine. So that'll be probably my next episode released and I'm really excited to get this done for you guys. I got one more story I want to tell. My voice is still a little bit scratchy so I'm just gonna cut this a little short. I have one more story for you.

The Joy of Playful Family Beatdowns

Speaker 1 14:09

Although it seemed like Jacob was not interested in many things at this time, we did have something aside from just riding the four-wheeler that we found he really liked. He seemed really into requesting for us to reenact one of his favorite scenes in his favorite movie and it kind of became a little family tradition for a while there. His favorite movie is Full Metal Jacket and the scene is where Private Pyle gets beaten down by the other guys because he's just kind of a failure and he's causing them a lot more pain than they're really willing to put up with. So they put soap in their socks and they go by and take a couple swats at him while he's in his bunk. At the end of that part one of the guys puts his sock over Private Pyle's mouth and says it's just a bad dream, fat boy. And Jacob absolutely loves this entire scene, so he kept kind of asking for it. He would say it's just a bad dream, fat boy, it's just a bad dream. And he would kind of flop his hands about on his body as if he were asking us to beat him that way. So we decided to give it to him one day and make him happy.

Speaker 1 15:15

We just thought he had a bit of a rough day and we thought maybe this would give him a good ending and send him off to a really fun sleep. So his dad and I stuffed socks with other socks and went in there and creeped in his room, just like the scene, and I put my wash rag over his head or whatever it was, and his dad went in there with two socks and just, you know, pop, pop, pop, pop, pop, you know, and he was just laughing and he'll do all the sounds that Private Pyle makes. He'll do all the the uh, you know all the crying and sobbing and all of that stuff. That's what Jacob does. So we did that for him and he loved it. That became his new favorite toy and when family members would come over we would have everybody line up. So we had the two half siblings, the grandma and the grandpa, and sometimes a couple uncles, you know, and boyfriends and girlfriends and whatever whoever was there. They all got a little wash rag and a sock and they went and took a couple beats on him in his room and he just loved it. He got to where he knew if we were getting company. He was getting his favorite beat down and I don't know why he loves that so much, but it just cracks him up. So that's my sick and twisted son's favorite pastime to end the show with today.

Speaker 1 16:35

Thank you for coming back and listening to my episodes. Thank you for sharing your stories with me. I have been hearing some really terrible stories and I just want all of you guys to know that I support you. I wish that there was more we could all do for each other At this time. There's not, but I'm really working on that as well. I hope you guys are getting through the holidays okay. It's almost over. You hang in there. You're a.