Raising a young son with Tourette’s Syndrome, Just Ask Mom Podcast Series, episode 3

In this episode, Emily talks about her journey raising a young son with Tourette’s Syndrome. She talks about the importance of community building on many levels, including strengthening relationships within the family and marriage, her church, her son’s school, and the larger community. By educating those in their lives about Tourette’s Syndrome, her son can be himself and feel part of a supportive and understanding community. She also discusses the importance of intentional planning of self-care and ways to make it happen.

Topics include: Tourette’s Syndrome, Self-Care, Family, Community, Advocating for your child at school.

Resources mentioned in this podcast:

Tourette Association of America  – (Formerly known as the Tourette Syndrome Association) focuses on awareness, research, and support.

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The book: The Fringe Hours by Jessica Turner

Transcription

Speaker: Welcome to the Just Ask Mom Podcast, where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline Production. Today we will speak to Emily, a mother of a son with Tourette’s Syndrome, living in Iowa.

Tammy: Well, I was wondering if you could just start by telling us a little about yourself?

Emily: Sure, my name is Emily and I’m a wife and a mom of two kids. I have a daughter who’s seven and I have a son who’s nine, and my nine-year-old son has Tourette’s syndrome. Tourette’s syndrome is a neurological condition that causes a variety of motor and vocal tics. So, in my son’s case he has a coughing tic, blinks his eyes, will have shoulder raises and that kind of thing. So, we have just had the diagnosis for a couple of years, so we’re sort of new to all of this but he is a joy in our family and we’re just really learning how to best care and best parent him.

Tammy: Awesome. So, before we get started I’m just going to ask you to step back for a moment and tell us a little bit about you either before mothering or outside of mothering, a little bit about you.

Emily: Yeah, I have a lot of different interests. My faith is a really important interest of mine, I just really enjoy being a part of a church and that’s just a really important piece of who I am. I also really just love creating things so I love to sew, I love to bake, I love to make cards. They do have to have a finite ending to them.

Tammy: (laughs)

Emily: I’m not the scrap booker that can keep on going forever but I do love those short creative projects. I also love the Olympics and I’m a big Disney fan, it truly is my happy place. So, those are some of my passions and interests.

Tammy: Wonderful, thank you for that. I want you to pretend that you’re talking to other moms, what do you want them to know?

Emily: I would say that the thing that I would want them to know is how community is so important when you’re the parent of a child with Tourette’s syndrome or any special need. That community is a place where you can get support and encouragement but it really just helps you be a super confident mom and to be the best mom that you can be to your child. So, I thought I’d share a few places that have helped me in building community. One of them is just within the family itself. I asked my son before I came here, “What’s the one thing that I do as your mom that helps you as a person living with Tourette’s Syndrome?” He said, “You just make it okay to have it.” A huge compliment from him, but just making sure that our family is a place that he feels safe and comfortable, that it’s a place he knows he can let all of his tics out when he gets home from school, or he can talk to us about how his tics are making him feel. Building community within our family means spending a lot of time together and it’s figuring out what that is. So, for us we love to play games together. We enjoy Disney together. (laughs). Traveling is a big bonding experience too. I’ve heard too that in parenting children with special needs, there’s a high divorce rate, and so, any time [spent] on our marriage is really important to us.

Tammy: Absolutely.

Emily: Our church offers a marriage conference once a year. It’s kind of like a tune up, like you think about taking in the car. We do that or we might read a book together just to have those times when we are really building our family together, so that we can be the best parents to our kids that we can. So, our family is one. Like I mentioned, my faith is really important to me and so our church community is important. Building relationships with our pastors, in particular building relationships with our children’s pastor and the Sunday school director, the Sunday school teacher has been really important just helping them understand what Tourette’s syndrome is and how they can best help him, because as important as our faith is to us and being a parent to a child with this diagnosis, it’s important to him.

Tammy: Absolutely.

Emily: So we’re building our community. We also have a small group that we get together with and ours happens to have other parents with children with special needs. And so, it’s just a great place for us to get to share about the challenges that we have but also to celebrate with each other when we do experience joys in our parenting journey. So, that’s been a really helpful place. Building community with other moms is really important to me. I have a mom’s group of girlfriends that we get together like once a month just to go out for dinner, and again they have children with special needs, some of them, and some of them don’t, but we’re all there to just encourage and support one another in our journey as moms and that’s just been a really important routine for me. I just try to really block that out on the calendar and make that time for it.

Tammy: Can you say a little bit about that, because I think that is so important, right? I’m sure there are so many things vying for your time.

Emily: Yes.

Tammy: It would be easy for that time to be taken over.

Emily: Yes.

Tammy: So, this has been something very intentional you’re doing.

Emily: Yes. I have to keep the “why” in mind. Knowing that taking the time to be with other moms to get that encouragement and support will help me be a better mom, a better wife, a better employee; all of those things if I spend time with them. And so if I know that “why”, then it really helps me to block that out on my calendar.

Tammy: I think that’s important. Especially I think moms, we can have a tendency to be like well, “I don’t want to be selfish,” Right? So, it’s not selfish it’s for all these other people that we’re taking care of ourselves.

Emily: Yes. So, that is a really big one. Another one that has been important to me is the online community. And I was part of a local Facebook group of moms for my area and there was a post one time that another mom had put on there that she had a child with Tourette’s syndrome and I was able to message her. We ended up getting together at a park, meeting in real life. Her son was just a couple years older than mine, so I was just able to just ask her about what the challenges were, that we might experience in the future. She was able to give me some resources in our local area, medical resources, community resources that would help my child. And so, it’s just so amazing to build that online community and turn it into real life community. We also have various support organizations that are online so we have an Iowa Tourette’s support group and even though we’ve only done one thing in person with them, I just know that that’s a place that I can go if I have a question. I’m sure I can message any one of them and they would help me out. They’ve been a really big support in terms of just being there, available. Also, the Tourette’s Association of America has been incredibly resourceful. They do these webinars every month and I’ve just found as a mom, like, I can sit in my pajamas, I can watch it, and I can feel like I’m connected to people across the country, able to ask questions on their chat, or hear what other parents are asking and that’s just been a really big encouragement from the online community for me.

Tammy: That’s wonderful. Was you son able to meet other kids with Tourette’s and how was that for him?

Emily: He was. He was able to meet the son of the mom that I had met online, and that was huge for him.  I think he felt really encouraged getting to meet him. “Hey, there is someone else out there who’s like me.” There’s a huge power in that for me too.

Tammy: Yes, yes there is.

Emily: As both a mom and as a child I think. For him to hear a kid say, “I have Tourette’s too.” It was just so empowering for him to know “Hey, I can do this, you know, look at him, he’s a couple years older and he’s making it through school, and he has difficulties just like I do and we’re working on it.” And so, I think that was just really encouraging for him to meet others too. Yeah.

Tammy: Thank you. I didn’t mean to cut you off though. Did you have others?

Emily: There were others. A couple of other areas of building community that have been important. One is just at his school. Building relationships with people at school and it’s where they’re at such a big part of their day and we have been so fortunate to have a very supportive school that has been wonderful to work with. He’s had numerous teachers that have made the accommodations that he’s needed, that have listened to him, that have worked with us, that have contacted me when there’s been a difficulty, but also celebrated with me when there’s progress made in the classroom. They been great to incorporate literature in the classroom about Tourette’s syndrome, and to just allow the class to hear about it, you know, through a book; which is awesome because my son’s a big reader. And so, to have that be the medium for him was so important. I just loved how they saw that and used that for him. So just building those relationships. Also knowing who in the school, sometimes it’s not their primary teacher. But who those people are in school that are safe for him to talk to when I’m not there. I think every kid loves their kindergarten teacher. So, he loves his kindergarten teacher and just knows that she’s someone that he can go to any time of the day, and if you need support that she’s there for him. Our school secretary is amazing, our guidance counselor, we’ve really worked with her on being able to help him. Especially perfectionistic attitudes are really common with children with Tourette’s and so she has been able to help him develop strategies to handle stress during especially test taking time, is a time when there’s a lot of tics going on usually. And so, it’s been just great to build relationships with those other people in the building. To support him in his journey too. And then the last place we’ve worked on building community is just in the medical community and with counselors in the area as well. just knowing who to call because it is interesting in that you can wake up one day and it’s totally different than the day before. Sometimes you don’t know what’s going to happen and just having those resources, know what they are ahead of time, what’s available in the community has helped me feel more confident as a mom because then I know, “Okay, if this happens then I can try to contact this person” and see what the next step might be.

Tammy: Yeah. I mean on the issue of Tourette’s, because I’m more familiar with that, the medical community is so important because when you have a young developing child sometimes it’s not clear if something’s a tic or a symptom of something else.

Emily: Yes.

Tammy: And so, a lot of sniffling tics are thought to be allergies for a while, right?

Emily: Yes!

Tammy: Things like that. So, it’s complicated. So, I think that’s really important that you have this comfortable relationship with the medical team, to understand sometimes it’s just a kid getting sick, and sometimes that’s a tic. (laughs)

Emily: Sometimes it develops into a tic, and sometimes you just gotta wait and see. But it’s hard to wait and see.

Tammy: Right.

Emily: So, just knowing what those resources are in the meantime has been just incredibly encouraging to me.

Tammy: Wonderful. Thank you so much. So, you sound like you’re doing great right now.

Emily: (laughs)

Tammy: But, I want to ask you, we ask everyone this, at this moment how do you feel – do you feel like you’re swimming, drowning, treading water, where do you feel like you’re at?

Emily: So, I do feel like we are swimming at this point. Well you know, if you do think of it like a pool, I would say I feel like we have jumped into the water, we are not looking around getting our bearings anymore, we know where we are heading. But we’re heading into the deep end of the pool because with Tourette’s Syndrome, things often get worse near the tween and teen years, before they get better. And so, we are in the shallow waters. But, I would say that by building that community that we’ve got some of those flotation devices.

Tammy: (laughs) Right?

Emily: In the water. And we’re learning some of those strokes, and how to swim. And so, we know that we’re swimming right now, but we’re heading into deeper waters. But, I think that because we’ve got the support, I feel really confident about where we’re heading.

Tammy: That’s really important. Sometimes you never know for an individual, but there are these tendencies with a certain condition, and you can try to prepare, right? And be as ready as possible for those. That’s really a good point. So, what is your self-care routine? How do you take care of yourself? Now you said some of this already, but are there other things?

Emily: What I would first say is that it is really difficult, I think any mom finds it difficult to take care of themselves.

Tammy: Yes (laughs).

Emily: I think especially when you have a child with special needs it can be extra difficult to find that time to take care of yourself, but it’s maybe even more important. So, again keeping that “why” in front of you is huge. For me, one of the changes for me in thinking about self-care, because my husband works a lot of hours and so it is difficult for him to be there and to, you know, watch the kids while I go do something. So, finding ways that I can do self-care in a way that I’m not always depending on him is important  – to be able to sort of create it myself. One of the books that I read that was really important was called The Fringe Hours by Jessica Turner. She talks about how you can redeem little pockets of time throughout the day. There’s so much time that we waste throughout the day. She talks about using waiting in the lobby for a doctor’s appointment or waiting in car line at school. Those are times when we’re sometimes just sitting there twiddling our thumbs, but they can really be redeemed for self-care. I’d highly recommend that book to others. But something that I’ve done and learned from her, is to just keep notes. I love writing, it is my love language – I love to send cards to other people. So, just keeping cards in my purse to be able to write those to other people. I just love doing that. And keeping a book I like to read so being able to have a book downloaded on my phone or one in my purse has really helped me to be prepared for those times, because I think something that helps me with self-care too, is having a plan for it. Because when I don’t have a plan I’ll waste it. Just keeping those things nearby that will help me to take care of myself are really important, and then when I do get those big pockets of times, like if my husband is able to take the kids for an afternoon – he’s taking them camping this weekend – so I have a whole weekend and that’s awesome.

Tammy: Oh, that’s wonderful! (laughs)

Emily: In all those bigger pockets of time, when they’re away, just making sure that I have a plan to really accomplish some of those bigger projects that do take more focused energy. So, yeah, I am looking to working on some craft projects later today.

Tammy: That’s wonderful, and enjoy the beautiful weather too (laughs). So, we found, as I talked to other moms, a lot of us agree, the only way to get through some of this is laughing, because if you’re not laughing, you might be crying.

Emily: Yes, yes.

Tammy: Do you have a most laughable moment you’d like to share with us?

Emily: I don’t know that I have like a super laughable moment. But, I would say that, having the freedom to express humor with Tourette’s Syndrome has been huge for us. One of the most helpful things was watching one of those webinars from the Tourette’s association, with Kathy Giordano, who is on it. She talked about how one of her sons had this hair flipping tic and I think they called it the “Farrah Fawcett tic” and it was definitely something, they were definitely laughing with their son. And so, we have tried to find those moments, when we can just incorporate those little moments of humor into his diagnosis. So, for us, and this was my son’s direction totally, but he has a humming tic and he’s a big Star Wars fan. And so, he has dubbed these his R2D2 noises.

Tammy: (laughs)

Emily: And so, anytime that, you know, we hear that humming tic come back, it’s one of his primary tics that comes around a few times a year- It’s like, “Oh, R2D2’s back.” You know, we can just talk all about it and it’s a great way to just lighten the mood with those. I think it can feel really heavy at times, and so just having humor to be able to lighten things has been really helpful.

Tammy: That’s great. Well thank you so much for sharing your story with us.

Emily: Sure.

Tammy: We really appreciate it.

Emily: Glad I could.

Tammy: Thank you.

Speaker: You have been listening to Just Ask Mom, recorded and copyrighted in March 2017 by Mothers on the Frontline. Today’s podcast host is Tammy Nyden. The music is “Olde English” written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFronline.com.

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