Parenting Severe Autism
Parenting Severe Autism
EP 31. Behind the Scenes of Severe Autism Parenthood and Perseverance
Every year as I prepare for the daunting task of legal guardianship reporting, I'm reminded of the unique and enduring challenges that come with raising my son, Jacob, who lives with severe autism. This episode peels back the layers of our daily life, from bureaucratic headaches like insurance verifications and PUNS list updates to the heartache of realizing the unchanging nature of Jacob's condition. I offer a raw look into the emotional landscape of a family navigating the complex world of autism adulthood, sharing my personal struggles with a system that often feels impersonal and indifferent to the realities we face.
Celebrations in our household are different, and Jacob's 23rd birthday was no exception. Lacking the usual fanfare, we find solace in the small traditions that bring joy, despite the trials of limited family contact and the impact of health issues on our routine. The episode also ventures into the realm of social media, where our YouTube channel "Burnt From Birth" reveals snippets of our life with autism to the world, often leading to misconceptions. I open up about my husband's solo fight through the early stages of diagnosis and advocacy, inviting listeners to connect with us as we traverse the seasons of parenting a child with autism. Join us for a conversation that promises honesty, solidarity, and a window into a world that many never see.
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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. Well, we're halfway through January, in the new year of 2024, and you know we're still going through the same stuff.
Shannon Chamberlin:In this episode I wanted to touch on some of the things involved with being a legal guardian for an adult with severe autism. So before we get into that, please make sure you know how to access all of my episodes. I keep them hosted at Buzzsprout so you can find me at PSA, short for Parenting Severe Autism PSA. Buzzsprout. com You can also find my podcast on most of the hosting platforms available. However, on Buzzsprout, I know that you can find my transcripts and a new AI description and stuff like that, so it's kind of cool and you'll be able to support the podcast by clicking to buy me a coffee or buying some merch and things like that. If you have any questions for my upcoming episode with my son's dad, he was parenting all by himself before we met. That episode will be coming up very soon and if you have any questions for that, please email me at contact. parentingsevereautism@gmail. com contactparentingsevereautismcom. And also if you have any other questions or comments, you can send them over there. Don't forget to check out the Facebook page and follow me there. It's just Parenting Severe Autism Podcast on Facebook, and that's just a page. Please forgive my social media ignorance. I'm really not all that into it, but I try.
Shannon Chamberlin:So yes, first of all, I just wanted to, I guess, give a heads up and also complain about some of the responsibilities that are placed on you as a legal guardian of an adult with severe autism. Every year I am supposed to report to the courthouse, and usually it's in February. They want the report by February 14. I've been counting on that every year since he was 19. They send me an envelope and they say return it to the courthouse on February 14. They actually white out the word by and choose to write on in handwriting on the letter. So I've been conditioned for several years to always get it to them by the second week of February. This year, first of all, the letter from the courthouse came in like November, and now they don't want it until May 18th, exactly on May 18th. And why would they choose to change the date for me to report? And the report is actually about how his money is spent, that little bit of money that he gets from supplemental security, disability income, whatever it's called. He gets a little money every month and I'm supposed to explain to them how his money is being spent. And that's not a big deal, it's fine, but it's just one of those things that comes on every year. And now they're changing the date and screwing with my timeline.
Shannon Chamberlin:At the same time as all of this is happening, I also have the insurance company calling his dad, my spouse. calling him, wanting to have a phone conversation and re-up on all the information, as if something is going to change and he won't need the insurance. I don't know. what is the point? And then also I've got someone from what's called the puns list in Illinois calling me at the same time of year demanding an appointment with me because he's on a list that used to be 30 years waiting list for services and we signed him up because it's our responsibility to do that, but we don't plan to be in this state for 30 years. And now they're saying you know, in one of my episodes I said that it's down to about three years, but we're actually at about five and a half because they didn't call the right phone number for two years. So yeah, those people also make me re-up all the information every year.
Shannon Chamberlin:Is it just me, or does that feel like re-victimization of the family every single year? Why do we have to go through this every single year to talk about how freaking disabled this child is? I'm really tired of it. It's. It goes on all the time, even when we lived in Wisconsin. Every single year, not to mention all the doctor's appointments for everybody involved. You know you got to keep up with all that stuff and now I got this stuff and I absolutely hate it. I just feel like it's constant re-victimization of the family members and the caregivers. This situation with his severe autism is not going to get better. Yes, we need the services. Why don't you just make a permanent yes check mark on there and leave us the hell alone? We have way too much to deal with, and now I have to play babysitter with you.
Shannon Chamberlin:Now this one lady actually has the balls to get snotty with me in my voicemail because she calls during working hours and then wants to know why I'm not answering the phone. And then when I call her back during the hours she's supposed to be available and she doesn't answer the phone in her office where she says she is working, I leave her a message that, hey, why don't you just tell me more about why you're calling? Because I didn't understand your first message. I don't know what list you're talking about. Whatever information you need from me, why don't we just get to the part where we make an appointment? Because with this back and forth we're never going to get anywhere. Let's just move past this initial outreach and make an appointment. If that's what you need, if you need my time, let's get it scheduled. And she calls back and of course I missed the call and she says yeah, I agree with you. If I keep calling you and you just refuse to answer the phone, we never will meet up and we never will get this resolved.
Shannon Chamberlin:These fucking people have no idea what it's like. They shouldn't even be allowed to work on cases like this. You know it is absolutely insane that I have to deal with this as a caregiver of a severely disabled person. I'm sorry, but that is my first complaint and I wanted you to know that, in case you are caregiving for your child who's not yet an adult, these are things that you get to look forward to and I just don't want anyone to be blindsided if we can help it. So you know, right now we've had a huge storm system moving through, we've had two winter storms coming through here and it's been going on for over a week. So we have all of that fun stuff to deal with.
Shannon Chamberlin:And it seems like now, you know, he just turned 23. So now at 23, his energy related to storm systems and stuff almost seems like it may be starting to change for the moon cycles and the storm pressure cycles. He seems to be perhaps less violent with his behaviors and instead more of a nonstop nervous energy, you know? He will not stop all day kind of energy and all three of us are exhausted because of it. Me and dad are exhausted for about 10 days, while Jacob seems to save it all up and he seems to recover over about two or three days, just sleeping really heavy and long. I don't know. He feeds off ours. he just sucks it out of us and puts it back out into the universe and it's just, it's totally exhausting.
Shannon Chamberlin:Jacob turned December 19th, and, as you know, we don't celebrate Christmas. We normally celebrate his birthday. He insists on a chocolate cake and a yellow cake being baked separately and we do all of these things and we do the child like birthday party with you know, all the kid stuff that you would go and get from the party aisle. That's his type of birthdays, just like you guys. I'm sure we received no contact once again from any outside family members for his birthday. It's not a landmark birthday, it's just 23,. But it is a celebration that he's alive and well, and that we're grateful for him, and nobody reaches out. So you know, yeah, we're getting used to it, but it's still a slap in the face at the same time.
Shannon Chamberlin:Unfortunately, this was the second year in a row where we were unable to celebrate his birthday on his birthday, because last year his dad had COVID on Jacob's birthday and this year his dad had a severe fever on Jacob's birthday. His lasted for three days and then I got a fever. My fever was higher than his. This went on between the three of us for over a week, but Jacob's fever only lasted about two hours. By the time he came around with his fever, we had it locked down and I was, you know, with all my herbs and stuff like that. So that was nice that he didn't get so sick, you know.
Shannon Chamberlin:But we felt terrible because last year, you might remember, we were hoping to take him to the hotel so he could swim and have a pizza party with us at the hotel, and the COVID wouldn't allow that and this year we were both so sick we couldn't do anything. His party did eventually happen, but we were so run down that we actually only baked him one cake. He still has other other in his cupboard cupboard and we just, you know, we just haven't been able to do it. We didn't do any gifts. My dear friend did send a gift for him early on, way before his birthday, and he's just been in such a mood. Every time he's available and we're all available together, he's just been in this really, really terrible, yucky, ugly mood and it's just not a good time to have him open a present and play with it or get it on camera or anything. He's just been a really ugly ogre for a while now. It's been over a month and before his birthday even came around. So I don't know, eventually we'll get there, but yeah, we feel a little bad, a little bit guilty, but this is what's going on. So you know, he still does get about six hours a week at his day camp that I've mentioned before. We're so grateful for that day camp. And you know, the other day I asked him how many kids were there with you at camp and he said December. December. That is what I got from him.
Shannon Chamberlin:Every once in a while I get so discouraged. Like last night, I got so discouraged, and I do frequently. He is speaking so poorly and there's no end in sight. There's no help, there's no services, no respite, you know, and I was just suddenly overwhelmed by tears of despair and impending defeat, like I just was slapped in the face with the reality of this defeat right around the corner. No matter how hard I work to help this boy, no matter the things that we do and the calls that we make and the appointments and everything, no matter what, it just seems like, you know, defeat is right around the corner and it just seems so pointless. Why, why am I fighting so hard for him to accomplish something somewhere? He has no opportunity and he is not interested in developing himself.
Shannon Chamberlin:I don't know if that's the right way to describe it, but, like I said, he used to have words. Not a lot, but he had some. And now I've told you before his speech is so messed up, the way he's curling his lips around his teeth and putting his tongue. I just don't even understand. I can't understand anything. And yet last night, when I was slapped in the face with this defeat and these tears just started streaming out, it was because he was saying a two-word phrase to me and I couldn't understand him. I tried and tried and tried and sometimes it's I'm giving him a hard time and I'm making him work for it, making him say the words. But no, it's not like that. Lately, lately, he seems like he thinks he is saying the words and I can't understand him to save my freaking life, I stood there with him for several minutes. We were really trying to communicate with each other and it was just two words that he was saying to me and I didn't understand. I couldn't make heads or tails of it and I finally figured it out and it was so pointless and so such a dumb conversation. I don't even remember what the two words were, but I like him to know that anything that comes out of his mouth is important to me and I worked so hard with him just to get those two words understood and they really were just dumb and it was just a stupid conversation. There was no point. I didn't even have to work that hard. But I don't want him to know that and so I cry.
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--tw-border-spacing-y: 0; --tw-translate-x: 0; --tw-translate-y: 0; --tw-rotate: 0; --tw-skew-x: 0; --tw-skew-y: 0; --tw-scale-x: 1; --tw-scale-y: 1; --tw-pan-x: ; --tw-pan-y: ; --tw-pinch-zoom: ; --tw-scroll-snap-strictness: proximity; --tw-ordinal: ; --tw-slashed-zero: ; --tw-numeric-figure: ; --tw-numeric-spacing: ; --tw-numeric-fraction: ; --tw-ring-inset: ; --tw-ring-offset-width: 0px; --tw-ring-offset-color: #fff; --tw-ring-color: rgba(59,130,246,. 5); --tw-ring-offset-shadow: 0 0 #0000; --tw-ring-shadow: 0 0 #0000; --tw-shadow: 0 0 #0000; --tw-shadow-colored: 0 0 #0000; --tw-blur: ; --tw-brightness: ; --tw-contrast: ; --tw-grayscale: ; --tw-hue-rotate: ; --tw-invert: ; --tw-saturate: ; --tw-sepia: ; --tw-drop-shadow: ; --tw-backdrop-blur: ; --tw-backdrop-brightness: ; --tw-backdrop-contrast: ; --tw-backdrop-grayscale: ; --tw-backdrop-hue-rotate: ; --tw-backdrop-invert: ; --tw-backdrop-opacity: ; --tw-backdrop-saturate: ; --tw-backdrop-sepia: ; background-color: rgb(252, 252, 253);">tonight</span><span data-v-ddf6351a="" class="transcript-element" data-mindex="12" data-eindex="615" data-key="12615. 761. 516" style="--tw-border-spacing-x: 0; --tw-border-spacing-y: 0; --tw-translate-x: 0; --tw-translate-y: 0; --tw-rotate: 0; --tw-skew-x: 0; --tw-skew-y: 0; --tw-scale-x: 1; --tw-scale-y: 1; --tw-pan-x: ; --tw-pan-y: ; --tw-pinch-zoom: ; --tw-scroll-snap-strictness: proximity; --tw-ordinal: ; --tw-slashed-zero: ; --tw-numeric-figure: ; --tw-numeric-spacing: ; --tw-numeric-fraction: ; --tw-ring-inset: ; --tw-ring-offset-width: 0px; --tw-ring-offset-color: #fff; --tw-ring-color: rgba(59,130,246,. 5); --tw-ring-offset-shadow: 0 0 #0000; --tw-ring-shadow: 0 0 #0000; --tw-shadow: 0 0 #0000; --tw-shadow-colored: 0 0 #0000; --tw-blur: ; --tw-brightness: ; --tw-contrast: ; --tw-grayscale: ; --tw-hue-rotate: ; --tw-invert: ; --tw-saturate: ; --tw-sepia: ; --tw-drop-shadow: ; --tw-backdrop-blur: ; --tw-backdrop-brightness: ; --tw-backdrop-contrast: ; --tw-backdrop-grayscale: ; --tw-backdrop-hue-rotate: ; --tw-backdrop-invert: ; --tw-backdrop-opacity: ; --tw-backdrop-saturate: ; --tw-backdrop-sepia: ; background-color: rgb(252, 252, 253);">.</span><span data-v-ddf6351a="" class="transcript-element" data-mindex="12" data-eindex="616" data-key="12616 761. 516" style="--tw-border-spacing-x: 0; --tw-border-spacing-y: 0; --tw-translate-x: 0; --tw-translate-y: 0; --tw-rotate: 0; --tw-skew-x: 0; --tw-skew-y: 0; --tw-scale-x: 1; --tw-scale-y: 1; --tw-pan-x: ; --tw-pan-y: ; --tw-pinch-zoom: ; --tw-scroll-snap-strictness: proximity; --tw-ordinal: ; --tw-slashed-zero: ; --tw-numeric-figure: ; --tw-numeric-spacing: ; --tw-numeric-fraction: ; --tw-ring-inset: ; --tw-ring-offset-width: 0px; --tw-ring-offset-color: #fff; --tw-ring-color: rgba(59,130,246,. 5); --tw-ring-offset-shadow: 0 0 #0000; --tw-ring-shadow: 0 0 #0000; --tw-shadow: 0 0 #0000; --tw-shadow-colored: 0 0 #0000; --tw-blur: ; --tw-brightness: ; --tw-contrast: ; --tw-grayscale: ; --tw-hue-rotate: ; --tw-invert: ; --tw-saturate: ; --tw-sepia: ; --tw-drop-shadow: ; --tw-backdrop-blur: ; --tw-backdrop-brightness: ; --tw-backdrop-contrast: ; --tw-backdrop-grayscale: ; --tw-backdrop-hue-rotate: ; --tw-backdrop-invert: ; --tw-backdrop-opacity: ; --tw-backdrop-saturate: ; --tw-backdrop-sepia: ; background-color: rgb(252, 252, 253);"</span>e was in the bath and I gave him his medicine while he was in the bath. At 23 years old, he's in this bathtub for about 30 minutes before I get up there to give him his medicine and I go in there and he's pissed off that he's hot. He's in there, he knows what to do and he's just sitting there pissed off because he's hot in his hot bath. So it took for me to say, oh, you're hot, yes, and I said, well, okay, what do you do then? And then for him to begin at that point releasing water and refilling the tub with cooler water. So I showed him how he wanted to do him both at the same time, and so I said, well, let's let some water out first and then, of course, plug it back up, then put cooler water in there. So we go through all of that.
Shannon Chamberlin:Now we're looking at about a five-minute job here, and as soon as it's done he wants to get out. It's so aggravating, I mean I just you know ugh. So then he gets out, he does his thing, he hangs his wet, soaking wet towel on the back of his bedroom door and then puts his warm, cozy, dry robe right on top of this towel. He's got several little places he can hang stuff on his door, but he just put the dry robe right on top of the wet towel and wants to go to bed that way. And then, while I'm in the bathroom, he's supposed to be getting his clean underwear on and going to bed. Just get in the bed right out of the bath, get dried and get in the bed. I'm in the bathroom and I told him I just have to pee and I'll be there and I'll tuck you in.
Shannon Chamberlin:And he would not. At 23 years old he would not put himself in his own bed. He stood at the bathroom door, hovering like Gargamel from the Smurfs, just hovering there, just standing there and talking nonsense through the door. And I got aggravated. I opened the door and he's right there in my face and like you're supposed to be in bed, you know. So I told him you are grown, you can put your own self in your own bed. I can still come and give you a kiss, but you don't need me here for you to get in your bed.
Shannon Chamberlin:Sometimes he can talk, you know, and he says whoa, whoa, whoa, take it easy. And I just was so mad because he's so, so needy and dependent and helpless and I am so discouraged and sad and exhausted and hopeless. I just need a little participation from him. He is not physically disabled. It's so aggravating. Oh my gosh, I'm thinking I'm going to have to take my job down from three days a week to two days a week, because his needs are. They're just so demanding, his needs are so great. And his dad's trying to do this comedy stuff. He's getting paid gigs he's doing really well, which is one reason why we haven't gotten the new episode out with an interview with him.
Shannon Chamberlin:I'm trying that social media marketing stuff and he's doing this other stuff and we're trying so hard to make a future for our son. I don't know what's going to happen to him. I haven't, his dad and I have not enjoyed any of our lives together because we're just enslaved to this autism. And yeah, it's a little selfish sounding, but don't we deserve to enjoy our lives at least a little bit? We already know we are never going to get the emptiness syndrome thing. We're never going to have that. But this child won't even man up enough to allow us to all take a family vacation Damn, we're lucky that he's not in diapers, but you know it's so hard. It is so hard and I don't have any encouraging words for anyone this time around. I can't believe that he answered a question of numbers with the word December. I don't know what to say or do right now. I just wanted to share these experiences with everyone out there.
Shannon Chamberlin:Well, the good news is that he has not been destructive over the past two months and thank God for medical cannabis gummies. I can get him pretty high and pretty happy, but he does require two doses a day, which is still a lot. I don't need that much. We do try to keep him involved with his dad on the YouTube channel, so he'll be doing some singing and things like that and no, you can't understand him at all most of the time, but it's fun for them and he gets to watch himself on TV after it's all uploaded and everything. So again, that channel is on YouTube It's called Burnt From Birth. It's got a lot of the comedy on there, but you can see our son and his dad interacting together. So if you're ever in the mood for something like that, watch out, it'll get you. It makes me cry. They're not sad, it's just they're tender and I don't know I might make you cry. Everybody loves those uploads, though.
Shannon Chamberlin:Please, if you have any questions for my spouse as a single father in the early years with the diagnosis of the autism and the therapies and everything that came after that and, as I mentioned before, the advocating that he did for Jacob all by himself with all the different schools in the area If you have any questions on that kind of stuff, please email me at contactparentingsevereautismatgmailcom. Next episode's coming up soon. I'm not sure if it'll be the interview or if it'll be something right off the top of my plate. I hope you guys got through your holidays okay. I know that it's really hard. Winter itself is so hard when there's nowhere for this boundless energy to go. For us. We're just stuck in the house and hopefully you guys have something, some kind of outlet for your child and for you. If not, I'm right there with you. Hang in there, you're a superhero.