Ep.26. Never-Ending Needs

Parenting Severe Autism mom and podcast host Shannon Chamberlin shares how she and her spouse struggle to strike a balance between taking care of their own adult needs while also taking care of their adult son's needs. Shannon feels that there has been some sort of shift in her mindset that may be making it more difficult to fulfill the caregiving role as of late. 

Transcript

SUMMARY KEYWORDS

day, good, water, reliant, hard, eat, child, work, give, hurts, adult, severe autism, constantly, teeth, kid, thinks, podcast, hands, suck, supposed

SPEAKERS

Shannon (100%) 

Shannon Chamberlin
0:16
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. Remember to check out the buzzsprout website at psa.Buzzsprout.com, where you can find some of my product recommendations that have worked really well for our child and our family, getting us through the summer, the stress relieving supplements and all of that stuff, you can find those product recommendations listed at the end of the transcript of every episode, I believe. You can also of course, find the transcript. And if you'd like to learn more about how to help support the podcast, you can find those links on the Buzzsprout website as well. Also, please feel free to stop by my parenting severe autism podcast page on Facebook, you can like and follow that for extra posts and little insights into our family and our situation and little updates about our kid. And if you have any questions, comments or other you're welcome to email me at contact.parentingsevereautism@gmail.com. 


1:23
Today I wanted to talk about something that's really been weighing on me lately about how needy our son is lately. And it's not lately. It's just different. You know, we all as parents, I think are wondering at various points in our lives with our children, Is this going to get easier? Is it ever going to get better? Is it ever going to be a lighter load than what I've got right now? And I've mentioned in other episodes that yes, I think it does get better. And it also gets worse and it gets better again. But also it's just you know, things change, it may not be the same level of intensity, because the situation itself changes and the individual meaning the child also changes which is good, right? That's a sign of growth. And change is always supposed to be a good thing. So I guess my point is that when our child was in school, there was a Groundhog Day event every day, and it was absolute hell, and I will go into more detail on that pretty soon in a different episode. But he got kicked out of school, and then that burden that we were carrying for all those years changed. So we just changed burdens, really, if you think about it that way. The level of intensity is actually still the same or greater with the new lifestyle of not going to school and not having home school and not having any of the services that we used to get in home or at school, the burden became greater, and it just was different. But it's still there because we're still caring for our child, you know, so I mean, there's a little bit of that that's always going to be there. We were faced with terrible behaviors, violence... I really thought at many different points that he was going to kill me. So that was a very stressful portion of our lives, and it went on for many years. But now that has subsided because of the medications. So we're coming up on the two year mark of me not feeling that he's going to stab me in the neck if he's behind me, you know? I'm not that traumatized, at this point. I still don't like him behind me, I'm still a little uneasy, he still gets a little crazy, but it's not like it was. So now the situation has changed again, but the intensity to me is still the same. 


3:52
And maybe it's because we're getting older maybe it's because I'm so aware of what other people are able to do with their lives who don't have a special needs adult child to care for every day. In fact, here's a note I recorded just talked to text into my phone because I had to get it out. This was done on April 29 at like eight in the morning. This is what it says- "He's so needy. Adults have needs-BIG needs. His needs constantly interrupt us during the time we should be using for our own needs, if that makes any sense. Essentially his needs are growing to the point of constant. It's too much. The tension with his teeth has been going on since October or November. It's now the end of April. I am currently nursing a tension migraine brought on this morning by him waking up before me and carrying on with one of his special noises - one that makes me cringe the most. So now I'm trying to help myself with my headache and he comes into the room and indicates that his tooth hurts -  him him him." 


3:55
So I mean obviously he needs my help, but still it's him him him and I never have time for myself. So I know I'm not the only parent that feels that way. I just wanted to read that just so you know, you're not a crappy person. I know that you feel that way sometimes. I know you feel like, this kid, this kid this kid, what about me? I have needs. Yes, you do. And it's very difficult. You're not the only one. And I'm not afraid to read that because I - yeah, I feel like an asshole. But hey, you know, I am supposed to be living my life. It's really hard to strike a balance here.

4:55
And, you know, we've been planning for our elopement, we got married, my spouse and I and we got to do that while our son took a nap. So that worked out really well. We had an outdoor wedding, and it was just the two of us a photographer and an officiant, and we got married in a garden. After that we had a suite at a local hotel, which is about seven minutes away, and we had a soaking tub in there. And we are, I'm sure you can understand you're probably in the same condition that we are, we're so broken down and stiff from all of this nonsense of having a grown toddler to take care of for all these years. Sometimes we just need to soak our bones at the hotel, but we had to get up and come back to the house and take care of our child because we are able to leave him - fortunately, right now - we're able to leave him with the grandfather and the uncle during sleeping hours. But during waking hours, no one cares enough to learn how to take care of him no matter how simple it is. And I know I've mentioned that before. And I'm sure that you understand exactly where I'm coming from. We had to go get all this food and then go to the hotel and soak and then wake up super early and come back and take care of our kid and make sure he was fed and happy and knew that he was loved. And then you know, we took him out to a special needs fishing thing and stuff like that. So just that kind of activity calendar knowing that that's always ahead of you, and knowing that you never get your own time, it's always about his time and how he feels - it's exhausting just knowing what's ahead. 


7:03
Actually, just after I released my last episode, within two days, I was overwhelmed with exhaustion. Again. What had me so exhausted and does still right now to this day is realizing that he is so needy. We just got his teeth fixed, you remember the filling that fell out. But before that this was like 41 days, we had to wait for him to be able to get in for the sedation dentistry. And during that whole time, and before, you know, because his his mouth has been hurting forever and for no reason, according to the dentist, he has this tooth pain. So every time after he eats, he can't seem to take care of it himself. All I want him to do is rinse his mouth out. And finally, after about, I don't know four weeks of it, he learned that he could do that on his own. But there's more that he can't do. So every time he ate I had to stop what I was doing, sit him down on my couch, get him fully reclined, get a headlamp on and gloves and get the floss out. I had to floss in between all of his teeth, have him do the full rinse with kind of like a warm sea salt water is what I was doing. And then I have a essential oil of clove that I was putting on when it was really bad. And he got to really complaining daily after eating, we just started feeding him soup because I just can't keep up with it. He wants to eat, eat, eat. And then he wants to complain, complain, complain. And you know what happens when they're in pain. I just didn't want to deal with all of that destruction and stress. Anyhow, before we went to full soup for many meals, I was doing all that. And then I would - at night, usually - I would put this topical essential oil on him. And he got to be a really good patient about it, you know, but that's the thing, is all he has to do is sit there, I have to do all the work. And you know, it's like 15 or 20 minutes of my day every time he eats, and that's just - I have so much stuff that I have to do you know, but then I have to make sure he's got his ibuprofen that they wanted him to take when his tooth hurts and you try to give it to him ahead of time because inevitably he's going to have mouth pain. And what happens if he's at a special needs day camp? Well, what happens as he starts to beat in his head off the wall, and they call us and make him make us pick him up early, just like they used to do at school. So we're not gaining any ground in that department really, because no matter where we try to put him someone's always going to end up calling and having us pick him up. So in addition to the tooth pain, then he'll say that his head hurts, you know, he'll put his hand on his head and he always says I not feel good. And then I have to try to figure out why is it really your head or is it something else? Is it this attention seeking behavior that they always tell me you're doing or what? 


9:45
And when he was having these... I just call them psychotic episodes before we got him on a good medicine plan, he was breaking his hangers in his closet every single day all day. He had a little chest of drawers that I shoved In the closet and he had hangers and he would just rip everything out of his closet every day, he would throw the chest of drawers all around the house, just all kinds of stuff. So I ended up taking the drawers and the hangers out, I got one of those little fold up fabric hanging shelf bag things. So there's like five shelves in this narrow column. And it just hangs on the closet bar there. I tried to go with that. But then he kept destroying that as well. And so I put a fingerprint access door handle lock on his closet. And now he's locked out of his closet constantly. Because even though he is on the meds now and he's much calmer, he still thinks it's great to play around with his clothes and get all of them dirty in one day. He used to be such a good boy about laundry. But now it's just another thorn in my side. My point about all that is that his clothing is locked up. He is dependent fully on us to be able to get dressed every day, and every afternoon after his rest. And whenever he doesn't have clothes on, if he decides he wants to have clothes, he is reliant on us. So we have to drop what we're doing. Same with his shoes, we have to lock his shoes up, as I've mentioned before. 


11:09
 And he can't take care of himself with food, we have to cook every meal I have tried for many, many years, probably going on 10 or 11 years now to teach him how to make a simple peanut butter sandwich with you know, honey, or just peanut butter. He knows how to cut an apple with the apple slicer, but he's decided he doesn't like apples now. So that's not easy. He can't eat bananas because they hurt his stomach, there's really nothing that he can eat and the stuff that is kind of finger food stuff, is - because he's gluten free and all that jazz - so expensive. I can't just give him freedom to eat those whenever he wants to. He can't live on snacks, anyway. He really likes home cooking. And if he's not receiving good meals, he'll let us know about it, and we pay, you know? 


11:53
So he's reliant on us for food, he's reliant on us for doing a bath, both of us have been teaching him how to make sure the bathtub is clean. We never let it get nasty, because we're always using it, you know, but we're just teaching him to make sure there's no hair in the bathtub, and then how to rinse it out with water and a cup and then how to plug the drain and start the bath. And I mean, this is since he was like 10, we've been trying to get him to regulate the water, fill up the tub and just do something independently for himself to take care of his hygiene and he just won't do it. It's not that he can't, he just won't do it. So he's reliant on us fully for the bath. 


12:31
He's reliant on us for brushing his teeth, he can brush his teeth, he's not good at it, he used to do it, okay. But if you really want his teeth clean, you have to do it yourself. But we don't do that. We try to make sure that he's doing it and just keep sending him back in the bathroom to get it done more. But what he needs is for us to dispense the toothpaste because when he dispenses toothpaste, it's a whole tube. And it's all out at once. And it's everywhere, but where it needs to be. 


12:59
And you know, the grandfather even hides the hand soap because he uses dove bar soap to wash his hands. And so there's no soap in the bathroom that my kid can access because he will sit there and claw the soap to death. And then when it gets really small, he'll stuff it down the drain of the sink and fill it up with water until it overflows, and it's all over the house. So again, reliant on us, just because we're trying to keep everything from being destroyed, it's a lot easier just to go and give him what he needs than to let him do it himself and then spend hours cleaning up the aftermath of that. You just can't win, you know? 


13:35
And then cleaning himself up after eating something like spaghetti. He really doesn't like using utensils, he will if he thinks I'm looking but generally he's gonna put his fork down and eat the spaghetti with his hands. It gets all over his face. It gets all in between his fingers, probably on his arms. You know, I like to put a dark shirt on him or make him take his shirt off if it's warm enough in the house when he's eating something like that, because it's just disgusting. It's everywhere. And then he knows to wash his hands after he eats. And so he turns the water on gets his fingers wet turns the water off but not before he takes those wet fingers and scrubs the outside of his mouth straight up his nose up his forehead into his hair down the back of his head around his neck. Then he turns the water off and then I have to deal with spaghetti and sauce from his chin all the way to the back of his neck all the way through his hair. It's just disgusting and his his hands do not get clean. And when you ask him Did you wash your hands? My hands are dry, okay? That's all he says. hands dry, hands dry, okay, hands dry. That doesn't mean anything. So then he'll go around and touch all the doorknobs and all the light switches and now everything's full of spaghetti and whatnot, you know, so that gets hard. 


14:47
And it's really scary... As you know, he hasn't been chewing his food and he hasn't been digesting and eliminating properly. So when he says his butt hurts just a couple of weeks ago, he said his butt hurt and I went in the bathroom, I asked him some questions. And obviously I didn't get the answers I needed. But I always try. I'm just hoping against hope that I will get a frickin answer that makes sense. But I went in the bathroom, and I found that there was no toilet paper in the bathroom. And when I noticed that I said, Oh, you need to come in here and clean your butt with this toilet paper I just put in here and I want you to wash your hands. And when I had him washing his hands, I gave him that bar of soap. And he alluded to the fact that he might have poo under his nails, which we tried to keep very short. It was something I've never seen him do before he got into the water in the sink. And he was actually very intent on washing his hands. Usually, it's not a thought at all. He's just trying to get through it and shut the water off and go do something else. And he actually hunched over the sink, and he was scrubbing his hands. And he's like, I hate poop. I hate poop. I hate poop. And he was digging under his nails. I've never seen him wash his hands like that ever digging under his nails and stuff. And that was horrifying to me. Because when I saw there was no toilet paper, I asked him something about Did you wash your hands and he says, of course,  "Hands dry, okay?" And then when I gave him the soap, he showed me that probably he did not wash his hands because he was probably equally as horrified as I was with what was possibly on his hands. And I don't know why there would be no toilet paper in the bathroom. But it happens a lot. And it's not him. So that upsets me greatly. It's hard. It's so hard to keep up with the needs of every single adult in the House. Who doesn't need toilet paper in the bathroom? I have my own special toilet paper that I use, and it's not used by anyone else, so it wasn't me.! But I don't know how that keeps happening. And he knows where the toilet paper is. And every once in a while he used to be good about restocking it and putting another roll on there. But that is basically dependent on his mood, I guess. And he's not always in the mood for self care, right? He's in the mood for being waited on. 


16:55
Couple other things, you know, he's actually reliant upon us to help him keep a positive attitude. We're supposed to be in charge of our own attitudes. We're supposed to be in charge of our own emotions and our own world that we create around ourselves, but he is dependent upon us to create his world around him and to give him a positive attitude. I mean, I just can't imagine what it would be like if we weren't there for him. Many times, I feel that we are crippling him by being there for him. But then when you realize that he is dependent upon us for keeping his own positive attitude, what in the world is going to happen if he ever qualifies for a placement or something like that? I have no idea. And it's not something that I can talk about with my spouse because it's very touchy. And it's just something he has to process on his own. And maybe in a couple years, we'll be able to talk about it, you know, but it's little things like that, that are just really discouraging. 


17:52
He needs a reminder to drink water. I have to remind him, have you had any water today? Every single day, like eight times a day. And a lot of times I don't think about it because I'm busy making sure that I am drinking water. I'm busy being an adult, you know, and he is also an adult and it's hard for me to keep the mindset that he is a toddler even though he's a grown man. It's very hard for me lately. It's getting harder every day. And I just need to find some Zen to get back to understanding that he is a child. He is a grown man child. If he starts acting like he doesn't feel good - This has been, well I told you this many episodes ago-  that if he likes to start pretending that he doesn't feel good, I'll just say drink some water, and it instantly fixes him. I've gotten him to believe that water is the cure for most things, which is awesome. But he won't do it on his own. 


18:43
And guess what else we have to remind him of? To stop drinking water and to stop drinking it mid drink and actually breathe. He drinks like he's drowning in an ocean. When he finishes the glass, he's just, you know, he just his eyes are watering his nose is get ready to snot and he's gasping for air. And I mean, really? At 22 years old, you need an adult to tell you when to stop drinking your water ,when to come up for air? And I have to say it a special way and I didn't figure this out until about a year ago or so. And this has been going on forever and ever and ever. But the way to get him to do it is I have to say Be nice to the water. That's the only way that he understands what I'm trying to get him to do. Be nice to the water. Be nice to the food. You know, don't stab yourself in the gums and the back of the throat with a fork, just be nice to the food and put it in there. You would think that it would be, be nice to Jacob. Be nice to your mouth, be nice. No. Be nice to the water. That's the only way that he understands what I want him to do. 


19:44
And I have to remind him to do yoga breathing when he's starting to get really agitated. This is something we started Oh, I think back in like 2012 I had him trying to do yoga with me. The only thing we really got was the breathing and I taught him that that's supposed to relax you, and he's a shallow breather. So we have to constantly work with him on trying to breathe deeper than just his throat. And you wouldn't believe how hard that is. He does not take deep breaths. And a lot of times he'll pretend that he's breathing in and he's actually blowing out. 


20:16
I don't understand how he is even alive, sometimes. It doesn't make sense to me, the way that he functions on his own. I'm surprised that he's breathing. I'm surprised that he can drink .I'm surprised that he can do these functions without someone aiding him or maybe, you know, some kind of device because he doesn't do it right. I mean, how are - how are you even breathing? I don't understand it. And it stresses me out. 


20:42
And we have to remind him to go back to bed in the morning, he will wake up super early, but no longer at 2am which thank God that's also from the meds that we've got him on. For years and years and years, we were up at 2am with him all day. Sometimes he'll sleep in, but sometimes he'll get up super early. But either way, when he wakes up, he needs his meds and those meds don't work immediately. They need some time to kick in. And he is an absolute nutcase until they kick in, and he tortures us and it sucks. That's why I have to get up so early and have my coffee and sit there alone in the dark. I need time to come to terms with life before he invades my space with this terrible attitude and these terrible behaviors and all this violence and screaming and shit. So we'll give him his medicine, and when I give him his medicine, I will tell him, you can go back to bed now you can lay down, just lay down and let your medicine work, something like that. I'm trying to read him every day that I communicate with him in the morning. Sometimes he's in a great mood, but most of the time, he sucks. And it just depends on what's going on, on how I tell him that I would like him to go to bed again. But the thing is that he knows he knows that it's not good until the medicine works. He knows it and he just won't or can't do it. Just go lay down, go be in solitude, let me have my space, he just won't do it. And what happens most of the time is something that I actually made a note of the other day, you know, he'll come into our little apartment area here. He'll just burst in and start yelling at us and just top of his lungs with some nonsense. He's not he's not yelling at us like 'I'm angry at you. You suck. I don't like you. You should do something for me.' He's yelling at us with his anxiety, I guess? You know, it's just a constant script that's coming out in the morning. Did you sleep good last night? Do you love me? I love you. Good morning. Did you sleep good. I love you that goes on for about two or three hours. And the thing is, you know how our kids have to have it not loud, unless they're the ones being loud. Well, that's what it is. We're being quiet. We're trying to wake up and have our coffee and he creeps in on my early morning time. He - no matter how quiet I am, I do have to walk by his room to go to the bathroom in the morning. And I think that before that if anyone else woke up and walked by his room in the house, then they woke him up. And then he's waiting for us. And he just jumps out at us in the hallway first thing in the morning, even if it's dark, And that was great during fall and winter. I could say look, it's still dark out, you know? And it's like, oh, six 630 In the morning, you know, and I could say hey, it's still dark out. It's not time to get up yet. But now it's light at like 5am or before. And it's hard trying to explain to him that well, you know, technically it's still dark out. And I don't want you to be awake yet. But here's what happens. We realized just a couple of weeks ago how odd it really is. But what's normal in our house is we'll be sitting there having coffee, basically in the dark, very dim lights, just chillin as much as we can. And we hear him coming. And I always say, here he comes quick, look miserable. And we'll just put everything down, we take our glasses off real quick. And we hang our heads and put our fingers on our temples and close our eyes. We just like curl up and look absolutely miserable and sick. And that's the only way that he will give us a break. And then he will read that body language. And he'll decide that this isn't going to be fun for me. I don't think they're going to give me what I'm looking for here. And he'll just leave! But that's what we have to do. Doesn't that suck? At least we know. 


20:42
And then he needs so much attention from us, he'll go to the neighbor's house. Remember I said that we have neighbors who are like family basically in our backyard, but there's a fence between us and they have a pool and our pool doesn't work anymore. So he'll go over to the pool. But if I want to sit outside and enjoy the weather, I have to go to the front porch or to the side of the house because if he can see any of us on our back deck, he will not let it rest. He's constantly waving and saying hi. Hi. Hi. Hi. I love you. Hi, I love you. And if you don't respond, he starts flipping out and it's pre meltdown behavior coming soon. straight out, you know is just because we want to relax and he can see us he'll even look through all that yard and all of that screen. We have a little screen gazebo out there, he'll look through all of that. And he'll try to see into the kitchen window and see if I'm at the sink. And if he can see me he will start Wiggin. I don't know, it just- it just sucks, you know, you cannot be in eyesight of him, but you can't let him out of your sight. It's really aggravating. 


25:26
The other thing is we have been working on his speaking, obviously, but for many years, we've been doing something that the autism whisperer we met in Wisconsin said we should do. And then the therapists also said that we should do it. And it's a lot of cross body exercises. So it's like stuff like Patty Cake movements and stuff, but we want to stick out our right hand across our body. So he'll stick out his right hand across his body. And you know, we make a cross connection and things like that are supposed to be really good therapy for him with spatial awareness and finding his feet and things like that. He doesn't do well with thresholds. If you had like a floor that's a different color. Or maybe there's a little slope in it or something, you know, and you have different color tiles - he can't stand it, it really screws him up. Things like crossbody exercises are supposed to help him with things like that. My point is that we are also the therapists in his life with speaking and the crossbody exercises and getting him to the gym. We take him for massages once or twice a month. And we get him on those exercise balls, sometimes at the gym, his dad's teaching him basketball and stuff.


26:40
 And he requires all of this from us, one because the services that he needs are not readily available, but also because when they are available, it's not enough. It's just not enough. And I would love to know who makes these rules up that someone as low functioning as him needs only this many hours a month of therapy and only this kind or that conscious, you know, we took him for OT and she gave up, "There's nothing I can do. He doesn't need my services." Well, he needs something! We took him to speech, and those sessions are not very long. And it was like once or twice a month and it's less than 40 minutes. I don't see how that benefits him. It doesn't benefit anybody. I would love to know who makes these rules. And who who decides that that's enough time for someone. It's really aggravating. 


27:29
But the point of all of this is how do you have time to be your own adult and then be his adult as well? It's - you can't. You can't live two separate lives, yours and someone else's. You can't live for him. I hate living his life for him. I want him to function and make decisions. And you know, the only decisions he seems to make is when to slam his head where to slam his head where to get himself a splinter under his fingernail, he does this constantly and when to say that he's hungry or he has a headache, you know, he doesn't do anything to make himself better. It's always got to be us. I can't even find time to arrange for new therapy and stuff like that, because we're so busy tag teaming for him. If our energy level goes down at all, absolutely not. He is not having it. If at any time we break character while we're dealing with him, you know you have to speak in your sing songy Disney Princess voice, or else! He will instantly respond negatively if I break character and just try to be an adult for a minute and try to get something done and try to get down to business. If I'm not constantly just bullshitting with him, he punishes me for it. 


28:38
Thank God, there's two of us, you know? We have to do the meals for all of us. We have to do the dishes. He doesn't do any of that we have to take care of our own personal hygiene and his. We have to do the grocery shopping for his special needs. And ours. We're all special with the food. We have to transport him to camp, we have to transport him to massage, I have to go to work. I have to go to the gym for my own upkeep. His dad would like to go to the gym, but he has to take our son with him. Also, I have this podcast and it's really important to me. My spouse has his YouTube channel and that's really important to him. And to me as well. We both love music. I have a bass guitar, I never get to play. I am so exhausted all the time, after dealing with all of my son's needs all day. There's nothing left for myself. I have nothing left and it just really annoys me and it hurts my feelings. I don't know if that part is ever going to get any better. His behaviors have gotten better, yes. His neediness has not really changed. 


29:38
He still will not wash himself. I have to do it and if I have him do it, I buy him all the tools that he could possibly need to scrub himself you know he's got a bath poof on a stick you know and all the things and he just won't do it. So annoying, you know? And he's a greasy, dirty boy and he has been for many years. He's got a weird waxy film all over him all the time, and it takes special exfoliation once in a while. His toenails grow vertically. I mean, it just so much, there's so much to have to deal with who's thinking about cutting a grown man's toenails? I never think about that. 


30:15
I don't know why it's just there's something maybe ingrained in us in our DNA or something that tells our brains to stop taking care of this individual after so many years, you know, what I mean is really funny. Like, we know that this guy is still a baby, yet, there's something communicating inside of us. That is saying, it's time for you now it's time to take care of yourself now, this person is a grown man. And that's where it stops. You know, it's not like this person is a grown man and can take care of himself. No, he can't. And we know that. But there's something stopping us from... what do you say...bending to his whims, and just conforming to what he wants all the time. And I don't know it's really weird. It's a hard, it's a dynamic that we hadn't thought about. We didn't see it coming. But it's very difficult adult life, when you have to do all of the regular things and take care of yourself and make yourself happy. It's very hard to do that for another person. Very hard, but you love that person, and you want that person to be happy. And then you realize that your own happiness is tied to theirs, because they'll punish you, I just can't figure out how to get back in the habit of just really keeping tabs on him like he was five. And I know that's where he's at. He's still five, or lower mentally. But He's six feet tall. And he's a man, it's I don't know, it's hard. 
Shannon Chamberlin

31:40
And it's pretty obvious to me again, that I am beginning to focus on the negative points of this difficult lifestyle. So in my next episode, I'm going to have a huge celebration of all of the great stuff that my kid can do. I'm going to start right now I'm going to make a list and I will tell you about all the stuff that our son is really good at, because that's one of the first ways that I can think of to begin to reconnect with my child and appreciate everything possible about him. So I always recommend that for everyone else. And it's because it works for me too. The next thing is I'm going to go outside and watch all the little baby animals because like I said before, my son has just like baby wild animals. And the more I watch them, the more I appreciate him and who he is and how he is and all of the great things. So I look forward to sharing all of that with you next time. 


32:36
This is Memorial Day weekend that I'm recording this, everyone else is out traveling and going to visit family or going to a lake or going on vacation to start this summer, they're getting all their barbecue ready and stuff. And we are living like it's just another day because it is for us, we don't get the holiday, you know, and I wish that all of us could be closer together, which is impossible because this severe autism has, oh man, it's just everywhere, but it's nowhere all at once. And that's why we don't have enough attention. And nobody knows about us. And nobody realizes that the services available for the so called autism community are not available for our autism community. They're not available for severe autism. 


33:20
So if you can share my episodes, or share my Facebook page, or just share the Buzzsprout site or something, just get it out there, I just really want to get more attention to my podcast, because ultimately, it leads to more attention to our community. And if you wanted to, you could share posts from my page. So you know, when you share it, it says that you shared parenting severe autism podcast's post. And I think that's a good start just to get the name out there and to get curiosity going and to let people know. Eventually, the name of my Facebook page is going to come across the page of someone who really needs to see that and who really needs to find my podcast. So I would be honored if you would share some of my posts and let people know about my podcast and let people know what we're trying to do. I mean, obviously a lot of people you know are not going to care, right? That's why we're in the boat that we're in partly, I'm thinking of all of you even though I don't know you I know what you're going through.

34:17
I know that these times during the next several months just suck for most of us. The routine has been broken as I mentioned before, and if you don't have summer school and you don't have extra therapy and you don't have all the stuff going on that the kid needs, it's just going to be really hard for both of you or all of you depending on your household situation. Remember to take a look at my product recommendations, a lot of the adaptogens that my spouse and I use to help manage our stress. Also some of the products that we use to keep our kid healthy and happy. 


34:50
I just gave him his buzz cut yesterday and now he thinks he's ready for the summer. I highly recommend a good fresh short haircut especially if you have a boy but a lot of the Girls don't really like their hair or get along with their hair either. Other kids can't stand to have their hair cut. So my kid if he has facial hair or his eyebrows are getting out of control or his hair on his head is too long, he starts making ugly faces in the mirror until he believes that he is an ugly person inside and out. And then he acts out that way forever until you fix it with a haircut and a shave. And we try to keep up on it. But sometimes his standards are higher than ours for himself, yet he is not able to do anything for himself. Just remember try to keep them busy. Try to keep them cool, nice cool baths or a little blow up swimming pool or a sprinkler or something to entertain the child and keep them cool and having fun and a good amount of sunblock ours our kid got burned at the pool the other day. And now he's He's very upset, I got it under control, I put aloe on him and everything. But all he does is complain about it now even though he's almost completely healed up. So you know, those little things make a huge difference. And with our son, he never forgets. So we want to try to limit his negative experiences. Because if he's not going to forget, I'd rather he not forget that he had fun. I'd rather he not forget that he felt good. I don't want him having constant negative memories. It doesn't take much to put that in his head. 


36:21
If you're having trouble getting through this holiday and the next several weeks, because summer is just starting and you're not going to get invited to things, and you know the drill - you feel free to email me at contact.parentingsevereautism@gmail.com Sometimes it helps just to type it out or talk it out, you know, talking text and stuff like that. And maybe you should even just try that. Make yourself little memos on your phone or just type something out and get it out or write it down and you don't have to share it with anybody, but you've got to get it out, you know? And if you really would like to email me and send your message, I will read it and I will respond. I'm very grateful for you listening. Your child is so lucky to have you in his or her corner. You hang in there. You're a superhero