Navigating Severe Autism: Our Family's Difficult Relocation

Shannon shares the challenging journey of relocating from Wisconsin to Illinois with her severely autistic son, highlighting the unexpected difficulties they faced and the small victories that kept them going through the transition.

• Preparing requires extensive preparation, ideally with videos of new locations
• Transitioning to living with grandparents created significant challenges, including disrupted sleep patterns
• Learning the ropes of medical cannabis in Illinois for Autism
• Seeking special needs theatre opportunities
• A stranger's understanding in a grocery store 
• Her son's attachment to his "Snowflake" obsidian rock shows his ability to connect and remember important details

Please support the show by sharing episodes with others who might benefit, as Shannon cannot advertise in parenting groups due to strict rules. You can also click the "support the show" link to help keep the podcast free for those who need it.

Chapters

• 0:18 Welcome to Parenting Severe Autism
• 1:35 Preparing for the Big Move
• 5:02 Unexpected Sleep Challenges
• 9:07 The Search for Medical Cannabis
• 14:57 Finding Support and Resources
• 18:43 "Oh No, Snowflake!" - Jacob's Story

Transcript

Speaker 1: 0:18

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... still working on some sound quality issues. My chair is creaky and I think it picks up in the mic, so I am sorry, but I'm wiggly and we're just going to have to deal with that. Please remember, if any of these episodes speak to you in any way and you would like to help me get the word out about parenting severe autism, I would be delighted if you would share any of my episodes, or even a piece of them, with someone else. As I've mentioned before, I'm not allowed to advertise this podcast in the parenting groups on social media, because the groups are very strict with their rules. I know that there are about 4,000 more families out there. I would love if you would share it and, of course, you can always support the show by clicking the support the show link, and that would help us keep this podcast free for those who need it, and I do have a goal of donating money to another severe autism family in need of some of the things that you cannot get on insurance and waivers and things like that. Most importantly, please just keep listening, keep advocating and keep sharing.

Speaker 1: 1:35

In this episode I'm going to just go over some of the things that we dealt with during the early days of moving from our location in beautiful Wisconsin back here to Illinois. We knew, probably two months ahead at least, that we would maybe have to move back to Illinois. So with our son, he actually needs a lot of notice. For instance, if we're going to take him to a water park or a new arcade or even a new store anywhere that we don't go regularly. The best thing that we can do for him is to show him videos of the place, and he gets very absorbed in that. He is very able to remember the video so well that when he gets to the place, he feels like he knows it already, and that is the best way for us to introduce a space to him. Even if we're going to a hotel that has an indoor water park or an indoor pool or something like that anything that's a big change from just being at home. We find that he makes the adjustment faster if he's seen it on video. So YouTube is great for that. A lot of businesses put little videos of their stuff on YouTube or on their own business web page. So that is normally how we would prep him.

Speaker 1: 2:54

But for this we prepped him by simply talking about living with grandma and grandpa mamaw and papaw is what we call them and trying to keep a positive attitude about it. When we talked about it, of course I was scared to death to have to do this and we were very depressed about it. But we tried to put on a happy face and help him look forward to the opportunity of living with his loving grandparents Of course he loves Mamaw and Papaw of living with his loving grandparents. Of course he loves Mamaw and Papaw. So we were hoping that he would just be naturally excited.

Speaker 1: 3:29

Unfortunately, there were no other selling points besides the love of Mamaw and Papaw. You know they used to have an in-ground pool but, as I mentioned, they had filled it in one or two years before and ever since then Jacob has just really not been very excited to visit them that was pretty much the only attraction and the neighbors, who he also calls Grandma and Grandpa. They have a pool, but they also have a lot of family. He would have needed to be supervised most of the time and there was just. It wouldn't have worked out if he were to visit here without us. So he wasn't accustomed to going over there and it just wasn't something we could sell him on. But we tried to just build it up because he had lived here before until he was like seven or eight, you know. So we thought, well, maybe that.

Speaker 1: 4:22

But there was that time when he stayed here for several weeks and when we picked him up he was sobbing in my arms and he did not enjoy himself and that was pretty much the last memory that he had. So you know, I think he was putting on a brave face for us, because we were putting on a brave face for him. But I don't think any of us were really buying into it at all. We all knew that it wasn't going to be great, but we tried.

Speaker 1: 4:53

He never really seemed to appreciate the land that we had there in Wisconsin. He never really was into it, even though he had all the freedom in the world. He could ride the four wheelers and we could go on walks and you know, there was water and woods. It was a beautiful land, but he was just really being miserable all the time. So we never thought that he appreciated it and we thought, well, maybe it won't be such a big deal when we do move. I mean, you know what does he care? Right? And that's the kind of pit that you fall into sometimes, I think, when you have a child who cannot really communicate with you, because you kind of just start thinking that he doesn't like anything and because he can't tell you that he does. He can only tell you that he hates everything. What I mean Like he's just, his behaviors and his actions are very ungrateful and very unhappy and very agitated. It was very rare for us to see him in any other state unless he was shuffling his feet in his room and humming in that almost catatonic state that I told you about. So we thought, well, you know what is it going to make a difference for him? I mean, he'll have more family around and he'll have more attention from his grandmother and stuff like that. So maybe it'll be better, maybe he'll enjoy it more than we will, I don't know. So we just I mean, we didn't have a choice, we just had to do it.

Speaker 1: 6:19

So even though the school experiences were bad there in Wisconsin, we were a bit worried about having to change schools again, but again he grew up around here and he had great experiences in the schools around here. He wouldn't be going to the same school that he did when we moved, but there was a really good chance that some of the kids he went to school with were going to be at his school and high school. So I mean, you're going back to your old neighborhood, going to be at his school and high school. So I mean you're going back to your old neighborhood. It could be good, it could be bad, we don't know. But we kind of felt a little bit better about the schools here because of how his dad advocated for him to get a good education system in place in the first place. I don't know. We just thought, well, it'll suck to have to change schools. I mean that sucks for any kid, but maybe it'll be better, maybe it will.

Speaker 1: 7:10

So we moved here at the end of April and school ends in at the end of May or beginning of June and we didn't want to get him all set up in a new school that year. I mean that's just way too much. It's an eight hour drive to get here from our house in Wisconsin and he had to put up with us packing and watch everything just get dismantled and I'm sure that was a lot for him and we really tried to walk him through the process during every single thing that we were doing and we tried to stay upbeat as he watched us pack all of our belongings and sell everything that we could in the meantime. It was really hard because we were so sad and we didn't want him to pick up on that. We just had to do, you know, do the best we could with it.

Speaker 1: 7:57

When we got here we tried to make sure he was content. The room that he ended up taking was not his room when we were living here before, so it was kind of new for him. I didn't like it much because it was in the front of the house and the street is right there and the windows are not great. So I was worried about all the noise because where we lived in Wisconsin it was the country. It was so quiet and I was a little bit nervous about that big change because it was hard for me to make that big change as well, just like if you live in the city and you move to the country, that the silence is annoying at first, you know. But also we thought he would have a great time getting reintroduced to all the people that he knew when he was a child, all the support that we have here with extended family and I mean just good friends of my spouse really for that, and it didn't take long to realize that he probably wasn't enjoying himself here. He did not adjust well and none of us really did. It was hard. You know His behavior was not great while we were in Wisconsin.

Speaker 1: 9:07

You may recall these stories have been leading up to a big event with his behavior. It just seemed to get magnified once we moved here and there was a big transition in just being here because he was used to having his grandfather and sometimes the uncle in our house. He was used to that. They were very predictable because they didn't work. They got up at a certain time very early in the morning. They did the same thing every day and it didn't really disturb him because his bedroom was way at the other. Early in the morning they did the same thing every day and it didn't really disturb him because his bedroom was way at the other end of the hallway and they didn't even have to walk by his room. So he got all the quiet and privacy that he needed.

Speaker 1: 9:45

But here this house is loud, it's not really well insulated and his grandmother was still working and she was working third shift. So he had to be quiet during the day because she was sleeping, and that's not something he ever had to deal with. Being at our house, he could make all the noise he wanted, even in the middle of the night. Most of us didn't even know because of the space in between our bedrooms and everything. Now he was having to really watch his P's and Q's.

Speaker 1: 10:18

He runs everywhere that he goes in this house and up the stairs and you know he's just a stomper and a runner and he wasn't really allowed to do that anymore. He's really not allowed to be himself in this house, because his grandmother needed to sleep during the hours that everyone else is awake and then she would, of course, have two days off a week. Now she's up during the hours that she would normally work, which is third shift, which is the middle of the night, and she is a stomper as well. She takes she's very small and she takes these fast little steps and she sounds like a drunken toddler running around the house and his room is right at the top of the stairs, on the way to the bathroom, on the way to her bedroom, everyone has to go by his room first, and the way that she stomps around the house with no carpet on wood floors, it was disturbing his sleep, it was disturbing my sleep, it just it was a nightmare, to be honest. And you know just this, drunk, if you can imagine how little babies, when they're learning to walk, they take a step and then they take a step, and then maybe they stumble and they take a few steps, boom, boom, boom, boom, and then they walk again. Yeah, that's what it sounded like. You know, just boom, boom, boom, boom, boom, boom, boom, boom, boom, boom, boom, boom, and all night long, all freaking night long.

Speaker 1: 11:41

So not only did we have to deal with the results of him having sleep issues still and not having meds, but also we had to deal with this new thing that was keeping him from sleeping. I mean, it had to be keeping him from sleeping. He can't tell us, but his behaviors got worse, so I think that it affected him. Then, when he would spend time with her because all he ever wanted was to spend time with his grandmother and when he would spend time with her, she was laying in bed in the dark and he would have to go in there and lay in her bed in the dark in the middle of the day and watch TV just to be with her. And that really pissed me off. Because, hey, you're dealing with sleep issues. The first thing you need is to regulate your circadian rhythm. You have to see the sun in the morning. You have to see the sun in the evening before it goes down. You got to get those different color rays into your vision so that your body can regulate. You cannot be laying around in a pitch black room in the middle of the day when you have sleep issues. It's just not good. But I couldn't keep him from snuggling on his grandmother I mean, how cruel is that, you know? So that was a real struggle for us.

Speaker 1: 13:01

I wanted to tell you three things about our move here. And then I have a cute little story. We immediately started looking into medical cannabis as soon as we got here, and I knew that there was a dispensary in a specific place because we had seen it. I think it was the first one. We went over there, desperate, very, very desperate. I mean we were haggard, we had tears in our eyes. It was absolute hell living with this child and watching him go through his own personal hell every day. So we were at our wits end before we even got to the dispensary and we found out that autism was not on the list of approved conditions. So we were very disheartened by this of all conditions. I mean, why not? Why not? So we gave a heartfelt story and gave our plea.

Speaker 1: 13:56

We didn't know how it worked... and I ended up working in medical dispensaries helping people get their cards for their kids with autism, so I know how it works now, but back then I didn't know, and we thought we could convince them to help us. And actually the girl that was working there gave us a full packet of information to apply and then said something to the effect of if you really need it and you can't get it, I can help you. And so we were like, oh okay, and we left and in the parking lot we kind of were looking at each other... We didn't even want to LOOK at each other in the parking lot in case anyone was watching us, but we were talking out of the sides of our mouths saying did we just, did she just offer? I think she did. Yeah, I think she just offered to sell us some weed for our kid? Yeah, that was... It was nice to know that she understood and she was willing to help.

Speaker 1: 14:51

We never did go that route, but the route that we went was that all of a sudden, my husband had qualifying conditions. So we took my husband to get medical cannabis for his conditions and it helped my husband a great deal. So I started making cookies for my husband. I learned how to make these cookies... the same... the gluten-free, sugar-free cookies that I always made and I would include this cannabis product in the cookies and it was an oil, it was called RSO and I started just making these cookies for my husband, cutting them and putting them in his snacks and he would have them for breakfast and all kinds of other stuff. So it got to a point where I was looking for some kind of something that would automatically open at a certain time in the morning and give my husband an access to a piece of cookie before he even got out of bed, because we really needed my husband to be medicated before he talked to anyone else in the house period because he was so out of sorts and mean and destructive. And I found that there's like this little thing you can set an alarm and it'll go off and I think it'll talk and it opens a little door and I think it's like a cat food thing or a dog thing, and so it will give snacks at certain times.

Speaker 1: 16:26

I never ended up doing that because things just progressed so quickly in our lifestyle and in this house that it wouldn't have been used as well as I thought it would. But I really felt like I needed it. I felt like he needed an IV of the shit just to keep him in a happy state and help him wake up better. I first started out with two and a half milligrams and that worked for a couple weeks and then it didn't work anymore, so I went to five milligrams. There's a little calculator you can use online and figure all this stuff out, and so then I had to increase it and increase it and increase it and then at some point, while I was working in the dispensary, autism got approved for the medical conditions that qualify. So that'll be another story. I can't get into that right now.

Speaker 1: 17:18

Sorry, I got off track, but the point was that we went and we got turned away because they were not serving autism at the time and my child was not even an adult, and it wasn't legal, I like recreationally at the time, it was just medical in the state, so that was 2018. It was just another blow. It felt like we got punched in the gut Because, like I said, all I kept saying in Wisconsin was damn, if we could just get to a state that has medical cannabis, I really think it would help him, and we were so excited that here's the one bright point of moving to Illinois is that we can get medical cannabis for our son. Walked in and they were like no, you can't, it doesn't qualify, it's not a qualifying condition, sorry. So we ended up medicating my husband instead.

Speaker 1: 18:08

The other thing I immediately started doing was looking into theater groups again, because there's nothing to do here. There is no yard, there is no pool, there is nothing, and there was no school yet. And I thought, you know, I'm going to get back into this search for theater groups because I feel that if he could express himself and have a creative outlet where he could just be an actor like he wants to be, then, yeah, that would maybe help him be happy. So I was delighted to find very quickly, within just a few days, that there was a theater group for special needs people and it was called the Penguin Project. I was so happy to get that figured out. I mean I was ecstatic and I got him involved in that.

Speaker 1: 18:55

In my next episode I'll tell you how that started out and how that went. And the other thing I wanted to tell you is that my spouse and I took Jacob to the grocery store and I mentioned a long time ago my theory on this and I'm going to mention it again here. He got to a point with public places that he seemed to think that he had to fill any very large space with himself and it seemed like an awfully large task for this little guy, even though he's 5'10". It just seemed like it stressed him out so bad to be in somewhere such as a big grocery store with all this open space. And as soon as he gets into a large open space he just goes crazy and starts trying to fill the whole space. I mean huge ceiling, you know really tall ceilings, big, wide wall-to-wall space. It seemed like he thought he was responsible for having to fill every inch of air with sound and body movements and it was awful for all of us. And I remember during our first or second trip to the store after being here. It's just right down the road.

Speaker 1: 20:07

I had tears in my eyes and I looked so desperate, my spouse looked so unhappy and, of course, jacob was doing his stuff. And this woman approached me. She's like I know what you're going through. I have one as well. My son has autism and I understand how you feel and I almost lost it. I mean, I already had tears in my eyes, I already felt sick and in pain and could hardly walk just from the weight of this severe autism behavior that I was dealing with. And to have someone reach out to me in that moment, it meant so much. But it also was like, oh my gosh, it's so obvious, wow, you know, wow, I can't believe that it's so obvious that she would approach me like that. And I looked at my husband and I was like did you hear that? And he goes. You need to go ask her what she knows. Does she? Is there anything around here that can help us? And of course I was just shut down completely. I didn't even think about that. So I went over there and asked her if she knows of any resources and she gave us some information on a local parent support group. That was not something that I had ever found in Wisconsin it was. I found an autism teen group, but I hadn't found a parent support group. So I thought, well, that's interesting, I've never been to a support group for anything. Wow, I wonder what that's like. It sounds like it's really great. And that was how we started our stay here in Illinois. That was within the first week we had all those things going on the theater group, the dispensary and the parent support group. In my next episode I will tell you all about our experiences with each one of those.

Speaker 1: 22:00

And right now I just learned yesterday a super cute story again about Jacob. So he took that little snowflake obsidian rock to camp again on Friday and when they were in the car on the way home, I think, and his dad asked him do you have your rock? And Jacob said, oh, no, snowflake. My spouse asked him if he knew where it was and Jacob indicated that he wanted to go back and get it. So they went to the park all the way back to camp, to the park that the kids all went to, and Jacob went directly to the picnic table that he was sitting at and found Snowflake on the ground right next to the picnic table. I don't know. I just thought that was so cute. I mean, he's really attached to this rock. Oh, no, snowflake.

Speaker 1: 22:51

I know that school has started for most of you, so if you have anything that you want to vent about, of course you can always contact me at contactparentingsevereautism at gmailcom. And I'm no expert, of course. I'm just a mom going through it, the same as you. But I hope that this has helped you in some way. Even my last episode about the IEPs and communicating with school and all that kind of stuff Lots of new stories coming up.

Speaker 1: 23:18

So if you have any questions, comments, concerns or you just want to vent, feel free to contact me. Also, make sure to check my podcast page and keep up with my social medias. I'm still trying to get some pictures out there that I told you I would get out there. As you know, our lifestyle is a little unpredictable and I'm not always able to do what I want when I want to, but I'm going to be posting those soon. But check my podcast page if you have missed any of my episodes. This will be episode 65. So if you have not heard 65 episodes from me, go catch up. Hang in there, you're a superhero.