Ask An Autism Mom EP. 62

Isolation In Parents Of Children With Autism

I think isolation creeps up on us...

And what happens is somewhat slowly, but when it does creep up, we realize that we've lost a sense of our old life. We've lost a lot of our old relationships, our peer groups change. And like you mentioned earlier on, sometimes the behavior of our children or even their schedules don't permit us to have the connections that we used to have.

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Episode Highlights:

In today's show, we have Laurie Mclean, a special needs mom and owner of the blog "Life with a side of the Unexpected". She's also a board certified reading specialist and school administrator in special education advocate who shares her experience navigating the school system from both sides of the story.

Transcript:

Hi everyone. Welcome back to ask an autism mom live with Jenn Eggert of lakikid.com you can join her every Monday live on Facebook to learn tips, meet other parents and share your insights. She'll tackle any topic from the dreaded meltdown to the basics of how autism can affect a family.

Jenn: Hi everyone and welcome back to ask an autism mom live. I'm Jenn Eggert of lakikid.com and today I'm sitting down with Laurie who is a mom and a blogger. I'll get more into that in a minute and we are actually discussing something that I feel is extremely important and not even noticed or spoken about the most taboo subject in autism, parents, isolation, parental isolation, family isolation. We don't talk about it with so many of you have admitted to me that you can't go anywhere because your child, it's so hard on your child. So today we're going to sit down and talk about isolation.

Jenn: So remember, you can join me every Monday at 1:00 PM eastern on Facebook to watch my tips and tricks and meet other parents and share your insights. Now to subscribed to that. You can press the number "5" in the comments section now or go to lakikid.com/Live. So again, like I said, I want to welcome all of you listening and let's see who's watching today. Shannon, Alicia, Melinda. Good morning folks. So ofcourse we all know we have a major sponsor for our show LakiKid and one of our most popular items right now is our ball chair. This ball chair simply sits on the floor and allows your child to bounce and move. If you are looking for a way to get them focused and involved in homework this summer, I suggest the ball chair because it gives them the freedom of movement but it also lets them focus and work on anything you're working on.

Jenn: Do I make my child do summer school homework You bet I do because I do not want to go through the two or three months of her having to relearn these skills in September. Hi Jason. Welcome back. Like every week. You're right Jason sound of you just saw, but we're talking about parental isolation and I know you and I have kind of briefly talked about how your stay at home dad and you wouldn't change it but it gets hard being stay at home parent. So for today's show we have Laurie Bell Mclean, Laurie Bell Maclean's, sorry folks who is a special needs mom and also a blogger @lifewiththesideoftheunexpected.com or her mission is to support special needs parents so that they can find balance in the chaos, experienced joy in the messy moments and make the most of their unique parenthood journeys. She's also a board certified reading specialist and school administrator in special education advocate who shares her experience navigating the school system from both sides of the story.

Jenn: So Laurie, thank you for coming. I'm so excited to talk about something that you and I folks, let me be honest here. Friday Laurie and I sat down to talk about today's show and it was on a different topic and Laurie and I discussed and realize isolation is real. If I'm feeling it and I'm seven years in the journey, Laurie's feeling it and she's in her, her kids are in their teenage years and she's still going through it. It happens folks. Parental isolation, familial isolation is real and we are going to tackle it today. Now, Laurie, how would you describe isolation in reference to the common feeling amongs parents of special needs children.

Laurie: I think isolation creeps up on us. I think in the beginning when our kids are first diagnosed or sort of in that shock perhaps grieving. And we go to battle we have those feelings of this isn't what we expected. We have to go through that process, but we really sort of just go to bat for our kids. And what happens is somewhat slowly, but when it does creep up, we realize that we've lost a sense of our old life. We've lost a lot of our old relationships, our peer groups change. And like you mentioned earlier on, sometimes the behavior of our children or even their schedules don't permit us to have the connections that we used to have. So I think the isolation that accompanies being a parent is because our whole life and perspective and the focus becomes caretaker and we hit play so many roles and are sort of connections with other people are sort of last on the list. So we become nurses, doctors, educators, caretakers, we do all of those things and and we lose a sense of our sort of self as a connected adult outside of that role.

Jenn: Exactly. And not only that, I found for me the isolation came in the beginning. I was so slammed with so many therapists, doctors, appointments specialist that Ryley couldn't handle it and with scream constantly. And so what did I do unless it was a therapist or a doctor, I didn't leave my house. All my therapists came in, so I was very stuck in my own home. But if I left the house, Riley would scream and scream and scream until we returned home. Finally, eventually she was able to go to a couple of people's houses, mainly her aunts who accepted her for who she was. And we kept a weighted blanket and would run in the room and wrap her up and, but isolation is extremely, extremely common parents. So if you are feeling this feeling, I just want to give a disclaimer, you are not wrong.

Jenn: You are not failing, you are doing your best job, mom and dad, if you feel that the isolation, and I'm going to be honest with you and I know Laurie will agree with me, there's a certain point when isolation turns from just being isolation into something more harmful. If you are isolating, I please beg you to contact your doctor, get some therapy if needed. I went to therapy and I don't regret it. I'm a lot of work. A lot of jobs now have as part as their health insurance. I don't know if you know about this. I believe it's called the EAP, but it's counseling through your insurance. You get five or six sessions of free counseling. Call your insurance company, ask what they have. Guess what I found out my insurance covered in home therapy where the therapist would call and we would do over the phone that way. I didn't ruin Ryley's routine, but I was still getting the support I need.

Jenn: Now Laurie, why do parents of autistic kids often feel the isolation?

Laurie: I think as parents of children with autism, there are many different reasons because some, some of us feel like we're teetering on that fence of being a parent of a kid with an invisible disability. So sometimes we try to, we don't have a place where we fit in quite well. Sometimes the behavior, like you said, it's just easier to stay home. It's just easier. And I call it, and what I experienced, like you mentioned my son's 14 now, but I'd say for a good decade, I was in what I call a defense mood and a survival mode. And it was just easier to stay home, to not put myself out there, to constantly have to explain behavior or deal with looks or hope that he'll be accepted and rejected. So it's part of like a self preservation almost to sort of like go into that defense mode where it's just you want to, you want to see that you're helping your child make progress and but you also want to make sure that it's not, it's exhausting who constantly feel like it's just easier to stay home than to go out and have meltdowns or have looks or those types of things.

Laurie: So I think specifically being a mom of a, of a kid with autism a lot of the behavioral stuff is very people, people have an opinion, people see bad behavior. They sometimes they're not very helpful. Sometimes they're downright rude and judgemental. So again, it's like that defensive just easier to sort of not even venture out that leads I think to a sort of isolation. And you had mentioned, I just want to also make mention of this because for me it also did turn into more than just isolation. I did experience depression as well. And it was something that I needed to reach out for help. Uh, you had mentioned that I'm a blogger and two of my biggest posts that have reached thousands of people are on special needs, parent isolation and special needs parent depression. So this is a very, very real topic and you feel very alone but you're not alone parents. So just want to get that out there. I'm glad we're talking about this because it is, it is something that we tend to keep inside

Jenn: Like you said, and when I said go to the doctor seems more, it's so easy for depression, for isolation to turn to depression. I too went through it. It is not something to be ashamed of. You come out a stronger person when you face these trials.

Jenn:Now when do feelings of isolation happen today I asked her one, didn't I

Laurie: Yeah. I think we touched on that. I think the feelings of isolation happened like you had mentioned in the very beginning. It's almost like we do get slammed, but also the fact that it does creep up after perhaps some unsuccessful outings or just that feeling of panic that you don't, that you're afraid something will happen. So you know, it can kind of happen quickly and then also creep up.

Jenn: And I think sometimes it's, if you look at certain children, mine is now verbal at the time she was not verbal. She'll say, I don't want to go out because there's too many people. It's too loud. So she's putting herself now through this isolation and I'm having to, as much as it hurts, pull her up a little bit outside of her comfort levels because if I don't, then she will sit in my room all day and watch TV she'll do, she's what she's doing right now.

Laurie: Very true

Jenn:So don't give up on your children. If they want to isolate themselves, find something that they can't say no to. Worst case scenario.


Jenn: You know for us it's simple and affordable. My friend has puppies. My daughter likes puppies. When we're having a bad day, we see puppies. in remember animals are great for that, for the kids who feel isolation and even us adults. A pet is a great helper to keep us calm and give us a little bit more. So what are some of the realities about being a parent to an autistic child that may cause isolation?

Laurie: I think one of the biggest one is that our social circles change. We do, we know we aren't able to sort of sit on the sidelines and interact with parents as the kids are off playing as easily. We don't tend to go to classroom functions and do that networking with the parents. When I would go into the class, I was literally acting almost as like a tss or an aide because I wanted my child to be able to participate. So I think that was a big, when you don't have as many chances as per the informal socializing with other parents you're a little more

Jenn: six dance. They're out for a lot of our kids.

Laurie: Absolutely. And I you think about even my own parents who are in their seventies and some of their best friends are friends that they met when my brother played baseball. And that's still who they're their best friends with. And we don't necessarily have those connections happen as naturally as if they're in the recreation league for your town. I think also our energy levels change. Like I mentioned in the beginning, everything seems like a battle. You know, we battled for services, we battle for support, we've got all four acceptance and a lot of times it just, our energy levels are, are not where we can put a lot into making new social connections or even figuring out ones that will work for our family. And I think also the offers to help kind of dwindle a little bit because other people start to realize that your child might be a little more difficult to handle or they don't know what to say.

Laurie: They don't want to offend you. And I think a lot of times, at least in my experience, people were rude about it, but the they just sort of dwindled that the offers to help or the even carpools or things like that. People didn't know how to, to I guess approach or manage. So I think the reality is of of having a child with autism or that we are the, their main everything. So being able to get help, being able to connect with others, being able to have the energy to do much of anything else. A lot of times just isn't happening. And I think that's at least in my experience what happened in, especially in those early years.

Jenn: And I just got to say I was really thrown off a couple of years ago. I, we were at a good place. She was not isolating. She was in a special needs preschool classroom and all parents got all moms craft the invitation for Mother's Day tea. And we were told that the gym would be set up with little tea session section, little tea areas and activities, and we would go with our child and join them and do all this wonderful things. Well, I get there and I walk in the gym and the secretary grabs my arm and says, oh no, you're not in here. The special needs kids get their own classroom. They don't participate in regular activities. And it kind of shocked me. Why would you send home and know promising all of this And they promised my daughter all of that. And all we did was we sat in her classroom and eat strawberry shortcake and had juice.

Laurie: Well that's the, that's a case of the school isolating, you know so that's like indicative of like at the larger picture, that happens so often that people don't even realize that. It just sort of happens that way.

Jenn: I think that really, I walked out of there and I'm willing to admit I walked out of a 20 to 30 minutes later in tears. I fought so hard to come back from this isolation in this depression only for a school to push me back into it.

Laurie: Right.

Jenn: Because my daughter can't handle it. I'm like, really there are children in that I or children in that gym that were neuro-typical that were acting up more than the children in my daughter's class.

Laurie: Right.

Jenn: So I, I just, that was something that stuck with me forever. It's been three years and I can't get over it.

Laurie: Yeah. I mean, and that's it. That should giant assumption. I think that a lot of people make that it's just going to be harder and they don't they don't know how to deal with it. I know in the beginning, and I'll be quite honest, my parents didn't know how to act because this was not something that their generation really had to deal with. So in the early years, there wasn't, a whole lot of, of all firms. Whereas I saw my brother's kids with my parents all the time, and they would go down the debt to the beach with my parents. And I thought, why isn't that happening And then I realized it's because they just didn't know how to handle him, And that's my own parents. So that that in a way makes you feel even like, okay, these are the people you're supposed to be able to count on your own family. And when then, you know, like I remember New Year's Eve parties and holidays, all I wanted to do was get out of there. And that became my way of, of acting as I would just, okay, do the least amount possible. Go say hello and leave. And that, that was what we did a lot. So that was very isolating.

Jenn: It is. And I think making it harder is the old, older generation. A lot of them said, oh, you can spank it out of her. Right. And that made me protect her because I didn't want people saying, Oh, you know, it was a disciplinary action when it was not, autism is not a bad behavior. It is not something that needs to be disciplined if something that needs to be understood and accepted.

Jenn: So what are the effects of isolation on parents I mean, you and I have discussed her own personal effects. We both hit depression, we both hit and probably you've hit anxiety.

Laurie: I think there are both mental and physical and sometimes even spiritual effects of the isolation that that parents feel because I think, like we mentioned that that defense mode and that really turning inward and feeling like you have no one really gives you a sense of hopelessness almost. And I think a lot of people who we're religious question why would, why would a god allow this to happen a lot of people experience physical burnout because they're constantly on the go. They're running from appointment to appointment. And this happened to me, I think in the first five years of running around, I think I gained 25 pounds because I was constantly grabbing food on the go or you know, he would only eat five things. Those were the five things that I ate was like pizza, chicken nuggets.

Laurie: So there are, there are a lot of things that happen when you go into this mode of your child's services and support become the center of your life. But I think in terms of what we talked about specifically with the depression, that's like a buildup of have that feeling of hopelessness and feeling like things aren't going to change. So you know, you mentioned that it is sort of our job to almost educate people about autism so that they understand that this isn't just bad behavior. So sometimes finding a purpose in that sort of helped me get out of things. It's just like, you know what, like I need to stop being so stuck and defenseless and, and educate people. So I used my educational background, but I also think that one of the, one of the things that I know is talked about a lot is, is self care. But I think that that's very important that you don't forget to take care of your own needs as, as you parent your children. And it doesn't have to be glamorous. It doesn't have to be joining a gym and being on the best diet. But it could be moments of deep breathing or journaling just to sort of make sure that you're taking care of your own inner self.

Jenn: Like I read or shower after my kids go to bed.

Laurie: Yeah,

Jenn: It's my quiet time. Now, I am going to jump over to the question section right now folks. Good morning from everyone. Alicia I do have to agree with age. Your daughter's better. She seems a lot in stressful situation, but it does come with a, just like anything, it's like maturity. They have to grow into it and by constantly stretching them just a little bit outside of their comfort zone, we're getting them to be able to come out in public. Like I saw them not in our group, but posted the other day. Someone has said, someone I know personally had said that they can't leave their house this summer and then it's going to take them four months to transition her son back into school. And I'm thinking, that's silly. So, you know, she found some ways around it. Her school has a feeding program, so she's actually bringing him pre school for lunch even though she doesn't have to do, but just so that the transitions and the isolation is not as bad on both of them.


Jenn: Now we have everyone understands you guys, like I said, this is such a taboo subject that it is hard. Now, Angela King says, before my son was diagnosed, we had to stop going to parties and changed churches because no one wanted my boy around. I've done it. I've changed churches to a church where the pastor's blind and they have two grandsons on the spectrum. I've changed where we shop because they understand better. I've changed. Changing things is not uncommon and often it actually does help.

Laurie: They had the same experience with church. we sort of were getting feedback each week when we picked him up that his behaviors were affecting all the other children, that's how we were being approached. So we actually did find it a different church because that's not a place that you want to go and sit and stress out old.

Jenn:Exactly and I like our church now because he was actually a classroom of a couple of children in their special needs. And they're being taught by a former special needs teacher. So she's really getting to them now. So don't be afraid to make changes because you never know if it's going to be the perfect change your family needs. Now, Shannon says, I'm actually able to take my son out, but I understand that autism children are different. There've been times I've had to take him out of our restaurant to deescalate, but he's almost seven now and those great. But he's high functioning and that's how Ryley is folks. And I'm not gonna lie, she is high functioning. For those of you that watch last week she did two live videos for us and she was able to, she had a couple of concerns but she was able to get through it. So yes, every child is different. And I don't want parents to forget that autism is a rainbow is a spectrum. It's, it's greater than we can imagine. Like I once said, it's like the stars in the sky, not one star is the same as another.

Jenn: But they're all out there, so except you're tough or where they are at and work from there. Angela againts his, my parents are upset because they think I isolate my kids when we ask to have holidays at our house or take part of the kids to the babysitters for doctor's appointment. Now, Angela, I understand your concerns. Not many people are like Angela, she has eight children ranging from brand new newborn and up to teenagers. So for her, and most of them are special needs for her. She has to divide them into groups and isolate. Half goes to grandma's, will have goes to the doctors or whatever it is in, I think in Angela's case in Laurie. I think you'll agree the more children you have with special needs, the more compounds that isolation.
Laurie:Absolutely.

Jenn:Because especially with a newborn, you don't want a newborn. I was in germs. So you're trying to think, oh, let's keep her home to keep her safe. And then you're like, oh my three year old home, put on clothes this week. We can't go anywhere.

Laurie: There's nothing wrong with changing and making your own traditions as well because we did that a little bit in the beginning when the kids were younger and it was just too much to come down, open presence and then expect a transition out to go here and it transitioned back and then a transition to dinner. So we made it so that it was what worked for us and our family and we'll invited people here and some family members didn't want to change and some did. So there's absolutely nothing wrong with making your own traditions that work for you.

Jenn: We actually need a day or two before christmas with our, with my husband's family by family is too far away, but we meet a couple of days before Christmas that way. And Christmas morning. It's just mom, dad, Jack and Ryley. And yes, it takes her hours to get through everything because it's, oh look, this does this figure everything out. And every Barbie that she gets, which is her obsession, has to be discussed, which Barbie it was, where it came from, what it does, why it was made. I mean, I know some of you hear that about different things, trains, Lego's, whatever your child's obsession at the moment is.

Jenn: So Chris, that is a great idea. And I was doing that for awhile, watching services on the television. It's not the same as fellowshipping with others in church, but at least you're not missing the church if that is important to you. No, that is all for questions today. I really am happy that we were able to sit down and talk about this. I know that tonight, tomorrow, in the next few days, this video will be watched more and more and hopefully more and more parents understand that it is okay. So please, if you know a parent who is struggling, send them the link to this video, tag them in everything and do what it takes. Be there for them if they're isolating in their house, go and sit in their house with them. I had a friend who did that came and plopped in my house and said, you're going to stay here. Spine is stay here. Now. I have one more question for Laurie that I totally forgot about. Laurie, do you want to talk about the ebook You have?

Laurie: Sure. like I mentioned before, I wrote these blog post basically to sort of share my own experience with isolation and depression in my head. Such amazing feedback from people that were just like, thank you for talking about this issue and people that could relate. So I put together, I'm in sort of an free guide about isolation and some simple tips that might be able to help you cope with it as a special needs parent. So I think we can share the link with you and you can sort of grab this ebook and walk through four tips that will help you feel a little less isolated. It is important to find who can relate. And I know that when you do talk to other people who get it, when you watch this video, you might even just feel relieved knowing like, yes, it's not just me.

Laurie: So that's sort of the number one. But please grab a copy of this free guide. I'm worried about it. You can take a look at different posts I have on my blog life with the side of the unexpected about depression, some talk about anxiety and talk. You know what I even have a post that I have shared with other people about how to support special needs parents. So sometimes when people ask, how can I help And you don't know how to answer, you can send them this post that will, that will tell them. And like Jenn mentioned, sometimes it's just a matter of being there, but please know you're not alone. Grab the guide and, and reach out and, and do what's best for your family to sort of make some connections.

Jenn: If you're looking for the Ebook, Miguel has posted the link in the comments section. Now it is there and it will remain there if you're looking for it.

Jenn: So I want to thank everyone for joining us today. I'm Jenn Eggert of course from lakikid.com. You can join me every Monday at 1:00 PM eastern for more parenting tips. Again, I want to thank Laurie for joining us on a very taboo subject that I hope we prove and show that it is not as scary. It is not as taboo in happens to all of us. I'm going to tell you it even happens to a lot of neurotypical parents. They get started right and this becomes this isolating force that holds us back. So check out her ebook. We will be talking about the same group. Everyone remember lakikid.com/groups to join our facebook group. You can join at any time. I want to thank all of you for watching. Let me see, what else am I forgetting Oh, I wanted to say that. I am coming out with a blog this week, of course, on isolation. I will let you all know when that comes out, but that is my story of how isolation kind of ruled my life. And I came back. So I want to thank you all and remember until next time, every child brings good luck.

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