SUMMARY KEYWORDS
severe autism, dad, child, son, work, daddy, started, appointment, knew, thought, day, doctor, driveway, learned, stairs, home, autism, life, episode, kid
SPEAKERS
Shannon Chamberlin
Shannon Chamberlin 00:18
Hello, and welcome to The Parenting Severe Autism podcast. I am your host Shannon Chamberlin, and I'm so happy that you're here with me today.
Shannon Chamberlin 00:26
Today, I wanted to share with you the very first learning experience that we had as a family when I first became a stepmom to severe autism. Oh! But first - last episode, I forgot to tell you about why our son was freaking out at the foot doctor. Remember, I told you? That was the very first time that he started to freak out was when we went to the foot doctor, because we had not experienced any success in recovering from what they thought was Reynaud's in his toes. And when the doctor examined his feet, he told us your son has been kicking things very hard, probably with no shoes on and so our son must have known he was gonna get busted. He got busted, and then that behavior got even worse when he heard the doctor tell us that. But I think that he knew, you remember? I said, that he somehow knew that we were at a specialist for his feet, and he just went bananas, and I think it was because he knew he was gonna get found out that he had been kicking stuff. And we narrowed it down to he had probably been kicking his bedframe, which is metal, and somehow it didn't break his feet, but he really had some trouble getting his shoes on. So that is what started the whole bananas sessions every time we went to doctors and so, there's the missing information from that story.
Shannon Chamberlin 01:42
And now, I just thought it would be fun to tell you how all of this started. I have gained a deep understanding of my son. And it's just because I've been trying for all these years to understand him and to relate to him because he cannot communicate with us. So I feel that it's our responsibility to learn to communicate with him, right? So when I first met these guys, I was learning about the relationship. And I learned that his dad had been the sole advocate for this child. As soon as he learned about the autism diagnosis, he was going around to all the different schools in the area trying to put together some sort of educational plan because this was 15 years ago or so, and it just didn't exist back then. Not in this area.
Shannon Chamberlin 02:28
There was a birth mom involved, and then she took the child - as happens in normal life, you know, and during his absence, I don't think that there was a whole lot of talk about the other parent. The reason I came to that conclusion is because of this whole learning experience that I'm getting ready to tell you about. By the time I met him, he already had primary custody of his son, and he told me about all these great things that he did. And then he told me that "As much as it seems that we have fun together, and he seems to be kind of attached to me, the reality is that if I were gone tomorrow, it wouldn't really phase him, he wouldn't know the difference, he wouldn't notice that I was gone." And I just - you know, that just broke my heart. I thought that was so sad, to know that this man loves this child as much as any father could love a son, and then to know that in your heart, you feel that your son wouldn't miss you if you were gone, because of autism. I just - I wasn't willing to accept that. I thought, you know, I just - I just can't, I can't begin to understand the sadness that must be in his dad's heart, walking around feeling like that, that his son wouldn't even know he was gone and wouldn't miss him.
Shannon Chamberlin 03:46
So as I've mentioned before, his dad and I were in the same business. And we did sales calls together and stuff like that. It just happened to work out right after I learned what I just told you that his dad had a few appointments in a row and I wasn't going to go on those appointments with him. We didn't like really leaving our son with the grandparents so much, especially if there was someone else, like me, who could watch him and be more interactive and keep him engaged with other things besides eating a full loaf of bread and watching YouTube all night. So we agreed that if I didn't have an appointment, sometimes it might be better for me to just stay home with the child while my spouse goes out and does his appointment. And I started working with him just to find out - now, I don't have any qualifications in this area, as you know. I didn't even have any kids before I met this one. I was in my late 20s at that time, I was definitely not trained in any kind of special needs development or anything like that. I had taken care of special needs kids and adults before that as a babysitting type of job, but nothing to do with their development or anything like that. So I was just kind of winging it and I thought 'Well, let's find out where this kid is at, and if this is really true.'
Shannon Chamberlin 05:03
I started showing him pictures. I would direct him to a picture on the wall and ask who was in it, I would just point to the picture in general in a vague direction and say, Where's Mamaw? (That's grandma.) And then he has Papaw, which is grandpa. So I would say, Where's Mamaw? Where's Papaw? He could identify them. And I would say, Where's Dad? Or, Where's Daddy? And he would look at me like, What? What is that? And I realized that maybe he doesn't know how to address his father, maybe he doesn't know what he's called. So first, we started working on that, because I could tell he can identify everyone else and other objects by if I said the name, he knew what it was. And if I said, Daddy, or anything like that, he didn't know. So we started working on that. His dad would be gone for about four or five hours at a time during these appointments. And I would just work with him as much as I could and try to make it fun for him to go through all the identifications. And then I would point at a picture of his dad and say, this is Dad or Daddy, I got him actually to say, Daddy, and it was awesome. This took about three or four nights where his dad was out working, I would just work with him. Constantly. So I mean, you know, hours and hours of this, but we made it fun. And he was much more tolerant of things like that when he was young, so, I don't think I could work with him that much these days, because he just gets offended when you want him to do stuff like that. But back then it was great. It was cool. And then I started to try to work with him on conveying the idea of the emotion of excitement and love and missing somebody who's gone. So I just started to try to figure out, is there a way that I can have him understand? I started using him as the subject. If he would be out of the room, he would come back in the room and I would say, Hey, I missed you so much. Where have you been? Oh, Jacob's home, yay! I started doing that, and he responded well. He understood that that was happy, I was happy to see him, and that he had been gone in a different room, and I missed him. And he started to kind of show me that he understood what all of that was. So then I started using a picture of his dad and pointing - we would sit on the stairs, looking towards the window that showed us the driveway, and I would say, oh, where's daddy? And I would point out that the car is gone. Daddy takes the car, daddy and the car are gone at work. But wouldn't it be so great if he would come home? And we're going to be so happy when he comes home, aren't we? Oh, it's gonna be just great when Daddy gets home! Where's daddy, Where's daddy? And I just kept working with him on that, and just hoping that something that I said would take hold. And I was always very over the top with the tone of my voice and the volume of my voice and my emotional words and the actions, you know, big hugs and big gestures, and teach him - I tried -to teach him you know, I would say love. And then I would give him a hug and just squeeze him and say, That's love and just little things like that. So I just kept doing that it was about three or four days. And then on the fourth or fifth day, I had been working with him for hours. And I knew his dad had an early appointment and that he was actually going to be home soon. So we just I was like, Hey, let's wait for dad. Let's wait for Dad and waited for dad for a couple days. And he didn't do anything when he got home until this one day and I guess it was all wrapped up in about a week. But two or three days of sitting on the stairs, looking out the window staring at the driveway and then recognizing oh, here comes the car. There's Daddy Daddy's home. Oh, that's exciting, you know, and he would just be like, we made it. You know, he never really reacted. But then one day towards the - it was the very end of me working with him on that, obviously, because I got I achieved my goal. But we sat on the stairs. I knew his dad was coming home. And we just waited and waited and I had him sitting there about 30 or 40 minutes before his dad should have been arriving home and we were just talking about how great it's going to be to see that car come into the driveway to see daddy come in the door. And what are we going to say? What should we say when Daddy comes in and I just kept driving it home with him. We're gonna say Daddy's home, Yay! You know, and his dad holed up and he did show a little bit of excitement and he just mirroring me so it doesn't necessarily mean that he was over the top with emotion or that he was really feeling it but he was learning. I think that sometimes people have to learn a certain behavior before they feel the effects of it, you know, perhaps right? So anyway, his dad comes home, and he starts kind of jumping up and down and making his little happy sounds and getting a little bit worked up, you know. And when his dad walked up the porch towards the front door, we were watching him, he couldn't see us. But we were just sitting there like, Oh, here he comes, here he comes, his dad opens the door. And Jacob jumps off the stair and runs over to his dad and says Daddy's home, yay! And this boy didn't really talk before. And, of course, it brought his dad to tears. It was - it was so great. But I think that I learned that this is how I'm going to interact with this child, and this is probably how the rest of the world is going to have to interact with this child. And it really just set the tone for our relationship for the rest of our lives.
Shannon Chamberlin 10:46
I still deal with him in that way. I still teach him things. I feel like during those lessons, he taught me how to communicate with him. And he taught me that it's not necessarily that he doesn't feel and he doesn't care, and he doesn't think - it's just that he doesn't know how to feel or care or think. He didn't even know what his dad was called. You know, he knew Mamaw, Papaw - he knew all these other people. But no one ever perhaps taught him that this man who loves you, cares for you, feeds you, dresses you, is Daddy. I don't think anyone ever addressed that with him because he sure knows his name now! Boy, oh, boy does he, he never stops saying it. But he did get attached to his dad, he did start to get happy, genuinely happy when his dad would get home. And he started to understand when his dad was leaving, and then he would start to ask in his own way, where's my dad? When's he coming home? You know, and so I think that he just didn't realize that that was aspect of life that existed or that was allowed, you know, I think he only knew what he was exposed to. And that makes perfect sense. Just like a lot of his quirks and stuff. I identify with a lot of our son's issues. Once I figure out what the issue is. I'm like, well, well, yeah, that makes sense. I wouldn't like that either. You know, I totally agree with you, but maybe don't punch the wall next time, you know.
Shannon Chamberlin 12:15
So anyway, I just wanted to tell you that story. Hopefully it offers someone out there some encouragement, because I really don't think that these kids are a lost cause. Even if the autism is super severe. Back then we didn't even know there was a severe autism and a non-severe autism, it was just autism, we only had exposure to one kid. And that was ours. No one else in the school that he ended up going to had autism. You know, we just we didn't know a lot back then. And this lesson that he taught me was invaluable. Maybe you have a child and you've never had a severe autism child before. And maybe your child just got their diagnosis, please don't think that your existence in their life is inconsequential. It means a lot to your child. And it may just take opening that door in their mind and helping them understand that this is a dimension of life that exists and you are allowed to feel it, recognize it, experience it. And I think that that should make a huge difference in your life and your relationship with your child. It's definitely made a difference for us and it taught me how to communicate with my child forever. No one else is going to understand your child like you do and it might just take something like that.
Shannon Chamberlin 13:32
It's a lot of work. You got to be diligent, as I mentioned, it took about a week just to get that one thing and it was constant. We didn't work on any other things, you know? I hope that is inspiring to you. I hope it helps somebody out there.
Shannon Chamberlin 13:48
Please remember if you would like to support the show, you can do that by clicking on the support the show link on my Buzzsprout website which is p s a short for parenting severe autism.buzzsprout.com psa.buzzsprout.com You can click on all of my episodes there anytime you want to support the show, you can click on the link to support the show. And as you know, a portion of the proceeds will go to help severe autism families in need of sensory and safety items that they may not be able to afford otherwise. You can also like and/or follow my facebook page which is Parenting Severe Autism Podcast on Facebook. As I said before, I'm really not that into social media. So there's not a lot going on on that page. But I do post all of the new episodes of my podcast, and my spouse has a YouTube channel so every time that he does a video with our son, I will be posting that on there as well.
Shannon Chamberlin 14:51
If you haven't seen it yet on my Facebook page for parenting severe autism podcast, there is a post there with both my spouse and our son singing Can you feel the love tonight? It's so super cute and sweet. All things like that will be posted on that page as well. Be sure to catch my next episode, I think I'd like to just share some of the things that I wish someone would have told us, you know? My spouse and I just, we constantly talk about man, I wish I knew this back then I wish someone would have given us the rundown of how to do life with this severe autism. And I'm just going to maybe put that out there in an episode so any new parents out there might be able to catch it and it may make a difference. Hopefully my story helps somebody. Also, your story can help somebody so if you would like to share your story, or if you have any questions or comments, feel free to send me an email at contact.parentingsevereautism@gmail.com
Shannon Chamberlin 15:50
I know that you're about out of time because you're such a busy parent with your child. So I'm gonna stop here. Thank you so much for listening today. You hang in there. You're a superhero.
