EP.34: Recounting When Autism Started To Show As Severe For Our Family

What happens when a phone conversation turns into an emotional storm? Join us as we navigate the unpredictable waters of raising a child with severe autism, sharing stories of heartache and hope, laughter and lessons. You'll hear about the time our son overheard a phone call that led to an explosive meltdown, revealing the depths of his feelings of exclusion. We also unravel the curious case where a sudden scare surprisingly soothes him, and explore the evolving role of cannabis in managing his behavior. Educator Claire joins us in spirit, as we express our gratitude for her dedication to understanding and supporting children with severe autism, underscoring the vital role of education in shaping compassionate communities.

Our family's journey takes a turn as we recount the transition to rural life, where joys of open spaces met the challenges of unmet needs in local schools. Delight in the memories of outdoor adventures and a cherished pet, while also feeling the sting of loss and adaptation. Whether it's the bittersweet task of explaining the concept of death to a young mind or finding humor in unexpected weightlifting interactions, this episode is a tapestry of emotions. As we promise more engaging stories in future episodes, we invite you to walk alongside us on this heartfelt journey, embracing both the trials and triumphs of parenting a child with severe autism.

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Chapters

• 0:18 Parenting Severe Autism Challenges and Changes
• 12:04 Transitioning and Loss
• 18:45 Muscle-Building & Parenting Insights

Transcript

Shannon Chamberlin: 0:18

Hello, to the Parenting Severe Autism Podcast. I am your host, Shannon Chamberlin. Shannon Chamberlin. I'm so happy that you're here with me today.

Shannon Chamberlin: 0:27

I want to start peeling the onion, I suppose, on when did all of this severe autism stuff actually start to turn up as severe in our lives?

Shannon Chamberlin: 0:37

I first want to say thanks to Miss Clair. She's out there working with kiddos like ours. She has found my podcast and has found some of my suggestions to actually be helpful in the classroom. I'm so grateful to Claire for trying that, in addition to caring enough about the kiddos that she works with to listen to this podcast and get the parents perspective and try the things that I'm recommending, she's also educating her teenage daughter about some of the challenges that we face in severe autism situations, which I think is fabulous because, as you know, many neurotypical siblings of our kiddos end up with long-term PTSD just from dealing with the lifestyle and being exposed to the meltdowns, the beatdowns, all of the things that come with severe autism. Although Ms Claire's daughter is not a sibling of someone with severe autism, I think it'sa fabulous thing that she's educating her daughter on some of the things that we deal with, because you never know when there is going to be a situation out there where someone like one of our kids is in public being misunderstood, making people feel threatened and putting themselves in danger because of it, and someone like Ms Claire's daughter could be around and say, hey, hey, I recognize this. Please stop doing what you're doing and let this person breathe, right? It's so important to educate anyone and everyone we can, especially the young ones. I just want to extend sincere thanks to Claire for that. Thank you so much. I would love to hear from anyone else. Please remember that you can email me at contactparentingsevereautism@ gmailcom. You can also text me from my podcast now, Buzzsprout Should be a little link on there. So many different ways to get in touch with me. I'm not too active on Facebook Messenger because of all this other stuff I've got going on, but any questions or comments that you have, please send them my way and I'll do my best for you. I have some pretty cute little mugs and cups and pillows and stuff available on my merch page as well, if you'd like to check that out. There is a link at the end of my podcast transcript I believe in every episode and you can follow all of my links that.

Shannon Chamberlin: 2:47

And that a real quick note on that, speaking of siblings, on October 3rd when I recorded my last episode.

Shannon Chamberlin: 2:53

Later that day we had a terrible, terrible night and the rest of the week because apparently Little Miss Eyebrows, the half-sibling that I've mentioned in my other episodes, arrived in town later that day. Our son overheard - well, he didn't overhear - His grandfather talks to everyone on his cell phone, on speakerphone. So my son overheard a speakerphone conversation where his grandmother's voice was coming over the phone and he overheard them making plans but no one came by to see him, no one asked to talk to him and it became a big thing. It was really terrible. My spouse and I were out for a walk, we came back in the house and our son was just violently outbursting for no reason, is what we thought. But you know he had a serious meltdown and it lasted all night and continued for several days afterward. He a just heard their voices on speakerphone. I don't know if he felt left out or if he was just plain pissed, but we really think that he just feels his love is not being returned. We heard him saying stuff through his angry tears about I love you, grandma, and stuff like that. And I don't know, boy, it's probably been at least six months since he's seen her, and all she does is bring a toy over that he can't play with by himself and leave it on the table, not say anything to anyone, and that's it. So that's his new relationship with the woman who was going to retire and help us take care full-time him . So this meltdown was on top of all the other stuff that we had been dealing with.

Shannon Chamberlin: 4:28

He's been having morning behaviors all summer and finally, just about a month ago I think, he went over the top and his dad was still sleeping and he blew right past me. I was trying to whisper at him to leave his dad alone, and he knew what he should have done. This was already his fourth try. He just blew right by me and ran into the bedroom, put his face right next to his sleeping dad's ear and started screaming at him something like Good morning, daddy, at the top of his lungs almost, and my spouse was sleeping soundly. So he scared him and the first thing my spouse did was flail his arms about to turn over and see what the hell was going on, and I think that he flailed and accidentally made contact with our son somewhere on his body. But whatever happened, it scared him straight and he's been good ever since then and every once in a while it seems like that's what happens. He has to get scared during one of his fits or meltdowns before he will pull himself together or he'll push you to the point where you have to just scream at him and again, there he is, living his fantasy of living on the edge. He loves that, you know.

Shannon Chamberlin: 5:47

I'm now realizing that he's not needing cannabis until later in at like afternoon like I don't know, like two o'clock, sometimes four o'clock. I'm wondering if that's why he's been better after dinner lately.

Shannon Chamberlin: 5:59

I mentioned in my last episode that it's just a nightmare about 10 minutes after dinner and he just makes us regret everything that we've ever done in life. And I told him a couple weeks ago he seemed really pissed off one night that he was having to wait until 630 at night to eat his dinner and I explained to him the reason I make him wait so long is because he's not nice to us after he's done eating, and if he's not going to be nice after dinner, he's just going to have to wait to eat later in the night because I don't want to put up with him for three hours. He was really upset when I told him that, but since I've told him that he's actually been pretty cool after dinner.

Shannon Chamberlin: 6:36

I don't know if it's because I'm giving him his cannabis medicine later in the day and it's lasting longer, having a better effect, or if it's because he actually is starting to understand his actions have consequences. I could hope for that, I don't know. But we did change over from edible cannabis to drinkable cannabis medicine and it takes effect much faster. It seems to have a better effect on him. He seems happier than he was on the edible cannabis. I just think it's working out a lot better right now. So I'm sure it's just a blend of everything that we're doing. You never really know.

Shannon Chamberlin: 7:12

We just had a full supermoon the other day and it was a nightmare, but the liquid cannabis really helped a lot. I triple dosed him for the two days that were really bad. That's the only way to really get around it and this is the development. He started getting weird the other day and he got put in his bed and it was right around the time that I would normally administer the medicine to him. So I went into his room with the liquid medicine and I showed it to him and he sat up in bed and he said, ah, like he was so relieved before he even took it. He saw what I was doing and he was so happy. He was like, oh, thank God, now I don't have to hurt you. You know, you don't have to punish me and I don't have to hurt you. It was - It was kind of funny. The relief was just so visible and so audible.

Shannon Chamberlin: 7:57

So when did all of this severe autism stuff actually start to turn up as severe? For a long time I thought it was always the same. He was a little bit of a brat and catered to and coddled when I met him and, as you know, he really got irate when he was not allowed to shoplift that big box of Pop-Tarts from the gas station on our first excursion out looking for our own home back in 2008. And he never seemed to get worse because we removed all of the poisons toxic foods, drinks, substances and toxic people from his life when we moved from this area up to Rockford. He didn't seem to get worse, he seemed to get better because he didn't have all of those poisons and it was my feeling that he was doing well.

Shannon Chamberlin: 8:42

Well, looking back, I believe that it was probably around 2012 when things began to go downhill. Why didn't it happen earlier? I think it's because of the moving and the constant change of life. Although we've always tried to treat him like a person and we believe that he should be treated like a person by everyone, I think perhaps we could have done a better job in our decisions to move when we made those decisions to move. Unfortunately, our lifestyle was such that we never really lived that securely. We had a townhouse and so we were renting and you're always at the will of the landlord in a situation like that and the landlord started getting a little weird and making demands of us. My spouse was like all right, look, we're leaving, so find us a new place and we'll go open our business there. And it was a very short notice kind of thing, and it was because of some kind of a weird request and demand from this landlord who had a crackhead son who kept breaking into his place and just things were getting weird and we couldn't remain there anymore and it took a long time for us to find that place. So there was really nowhere for us to go and we just had to find the next best place we could and move there. And we got really lucky with finding a place that had a building that we were going to use for our business and everything went really well. But we had to move on it and we had to move fast, and then it turns out that that one was for sale. So we never did really unpack our life and it was that house and that move that, I think, started things going downhill.

Shannon Chamberlin: 10:21

I really think that things were sour on the education front before they were sour on the home front, but I think we could have maybe done a little bit better. He may not have absorbed or understood what we would have been trying to say at the time, but perhaps we could have prepared him for the move, you know. So just caution with stuff like that. You would think that moving your business, relocating, finding a home and all of that is adult stuff. And as much as I try to include our son in the decisions because it affects him more so than it would probably a neurotypical child, sometimes we forget. We're so absorbed in what we're trying to do to provide for him that we don't consider consulting him. So I really think that perhaps things might have been a little bit easier if we had given him a rundown and he may not have understood. But maybe on some level I don't know. You know, it's easy to look back and say, well, I did this wrong and I did that wrong. And the fact is that probably, no matter what we would have said or done in relation to moving from one house to another, everything probably would have ended up the same, because he does have severe autism and it's going to come out one way or the other. I think we got lucky for a number of years and I think that perhaps the move maybe kicked it into high gear. I did notice some little weirdness things in our townhouse between the ages of 8 and 11, and I just attributed it to, you know, maybe early puberty or something like that. But I really think that the education system in the new location had a lot to do with bringing certain behaviors to the surface, but I think they were going to come anyway, I guess, is my point.

Shannon Chamberlin: 12:04

Things were great when we moved. We had land, we felt that he was going to be safer because there wasn't a busy street going by the house. It was a country house. We had neighbors, but they were cows. It just seemed a lot safer and he had a lot of fun there and we wanted to have a remote location for his safety and for our peace. We just want to enjoy ourselves when we're not working. So we had all this land. It was like 12 acres or something. Most of it was a farm field that we had nothing to do with, but our yard was large and we used to walk on the walking trails. He had a fairly new tricycle big basket. We would put the dog in the basket and we would all ride bikes on the bike trail. The dog would chase him around the yard and he just loved it. He would run, the dog would chase him, right on his heels and they just ran and ran and ran and ran and he had a great time. We never had a bad time there at the house.

Shannon Chamberlin: 13:00

However, this is the school that broke the notebook communications rule that we have and started just kind of forcing their way on him and on us, and they didn't seem to have any respect for the way things need to be done. And I think he was the only kid with autism in the school. There was a Kiwanis group that was involved with that school somehow and they were having an iPad giveaway for a special need kid with autism and he got it because I think he was the only one. I really think that the disrespect he was receiving, not having his needs met at that school, really kicked off a lot of stuff, because at home everything was great.

Shannon Chamberlin: 13:38

There were a lot of adjustments during that one year that we lived there, from 2011 to 2012, I think it was, and I think 2012 is where it really started to go downhill. So during that time, some of the things he had to adjust to were some of his favorite things, like he outgrew his shoes. We needed to buy him bigger shoes and it just so happened that his feet grew into a size that no longer supported the Spider-Man look and the Velcro closure. If he wanted to get cool looking shoes, then they were going to tie. If he wanted to get Velcro shoes, then they were going to look like grandpa shoes. There was just no happy medium there. So of course, he wanted cool looking shoes and we had to try to teach him how to tie his shoes. I was either living under a rock at the time, or it's true that the non-tieable shoes already existed. I don't quite know why we didn't have a laceless shoe option at the time, I don't know. But we tried to teach him how to tie his shoes and it went on for a year or more. He just couldn't do it. Finally he did it, you know, but it took forever. He was bummed out and it was sad. You know, he always had Spider-Man shoes with Velcro closures all his life, and then all of a sudden he gets bigger and now he's got to wear grandpa shoes if he doesn't want to work hard to close them up. And it was a hard transition for everybody.

Shannon Chamberlin: 14:59

That was kind of the start of things being weird, he started showing a lot of in my opinion anxiety because he started stretching his fingers way, way back. I mean, he can stretch his fingers back till they touch his arm. It's really kind of creepy. And at the time he was doing that so much and bending them so far back that his skin around his fingers was cracking and bleeding and you just couldn't get him to stop. And that was the first really neurotic, obsessive behavior that I noticed with him. And it went on forever. I thought he was never going to stop doing that, and sometimes he'll still do it to this day. But at least he's not cracking and bleeding anymore. That was just a mess and no matter what he would not stop.

Shannon Chamberlin: 15:42

I think that's when I became the person that has more rules. You know, I didn't want him hurting himself and bleeding all over the place and I couldn't just let it go, because I just don't think it's healthy to let stuff like that go, because then there's going to be another behavior and another behavior and pretty soon he's going to be a bloody mess rolling around my floor and there's nothing I can do about it. So you kind of have to nip that in the bud. You know, if he's doing it absentmindedly, you have to draw attention to it, in my opinion and I don't know if that's the right thing I've never been taught how to deal with any of this stuff, but it didn't seem healthy to me, and it was during that time with the school and all that stuff. So I think that maybe that was an indication that things were not comfortable for him. We did everything we could, but we just couldn't get the school people to listen to us and to respect him enough to do the simple, simple things that make his life happy. So, luckily, we weren't there very long. The house got sold and we had to move and that's why all of our stuff was sold, never really got unpacked, and once we moved, things got really strange and, I think, went downhill pretty quickly. It was heartbreaking and I'm going to start getting into that stuff in my next episode too.

Shannon Chamberlin: 16:55

And speaking of the dog chasing him around the property that we were living at, we got our Mr Dog in 2008 and he was just everyone's companion. He was always with us doing everything. We had to have Mr Dog euthanized about, I don't know, like 18 months ago. It was terribly sad and I didn't try to remember the date because it is so sad for me. He was my little buddy. He was supposed to be Jacob's buddy. You know he was... Jacob was supposed to take care of him and have this responsibility of feeding the dog. I know I've mentioned that and he never did. He didn't, he didn't really ever care, unless the dog was playing with him or if he was trying to take the dog's bed.

Shannon Chamberlin: 17:35

How does he deal with the death of a pet? How did he deal with the death of his uncle and I don't really have answers because I'm not in his head and he doesn't really speak well, but the dog passed about 18 months ago and about three days ago Jacob was down here just sitting with us and out of the blue, he said where's dog? And I didn't know what to say. I was shocked, I didn't know what to say and I had to ask him several questions to make sure that that's what I heard him say. Is he actually asking me where is the dog? He named the dog Doggy. I was confused and I have a picture of the dog on my phone and I said this Are you... this? Both of us, me and his dad, were just like, like are you asking about Mr Dog, really? So yes, it turns out he was asking where is the dog and that's the first time that he has given me any inkling that he notices that Mr Dog is not here. We did try to address it with him but he kind of just glazed over and it didn't really seem to affect him one way or the other.

Shannon Chamberlin: 18:44

So here you go, folks. 18 months or so later he comes up with a question about where is the dog. I thought that was very strange and his dad explained that the dog is in heaven with his Uncle, Todd todd, and it was just really really strange to me. So I wanted to include that because there is an answer about how does he deal with the loss of a pet or a loved one. That's all I've got on that, and one cute little thing that I think is just hilarious lately I've been doing a lot of weightlifting over the past couple years. My arms are actually starting to get a little bit muscly and he seems to have noticed, even if I'm not wearing a tank top. I think that I don't know, I don't know what it is that makes him notice that my arms are thicker and muscly now. But he is constantly making a special trip over to me and he'll ... say the best that he can, he'll He'll say squeeze arm, squeeze arm. And then he'll put his little fingers around my arm and he'll just squeeze and release real fast like almost like a blood pressure wrap thing, and he'll go vang bang, vang bang, vang bang, vang bang, vang bang, vang bang, vang bang, vang bang, vang bang, vang bang, vang bang vang bang. I don't know what that means, but it's so cute. I am, am again, again his new toy because I've got some muscles.

Shannon Chamberlin: 19:55

So if you're looking to relieve stress and you don't want to drink and you don't want to smoke pot and you really need an outlet. Try to pick up some dumbbells, build yourself some muscles and then you'll also be entertaining to your kid after you get some muscles ,right? Well, again, I have run out of time. I will be back next week with more stories. We're going to get into some real deep stuff coming up. It's heavy to me and hopefully it helps some of you out there. You hang in there. You're a superhero.