In this episode, a mother and grandmother from Iowa talk about the difficult journey of changing diagnoses, medications, and symptoms during the early childhood of their son and grandson who has Tourette’s Syndrome, OCD, and ODD. They discuss the importance of support groups, recognizing your own needs (especially when they might be different than the needs of your family members) and making sure to honor them. In their case, the need to be social and get out with other people.
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 with a mother and Grandmother from Iowa. Today they will be speaking about their elementary school-aged son and grandson who has Tourette’s Syndrome.
Tammy: Today we’re doing something a little bit different. We have a mother-daughter pair. I’m going to ask you both to just tell us a little bit about yourselves?
Mom: Okay, I’m an Iowa mom. I have a son who has Tourette’s, OCD and ODD – major diagnosis there. Yes, some other ones too. He’s at grade school and we live in Iowa.
Grandmother: And I’m the grandmother of a grandson with mental health issues and I’m here to support my daughter and my grandson.
Tammy: Great. So before we get started, I’m going ask each of you just to tell us a little bit about yourself before mothering. What were your passions? Or outside of mothering, what do you enjoy or when you fantasized about the kid’s going off and you having a moment to yourself, what would you do? [Laughs] So just what’s interesting to you as a person?
Mom: Oh boy. [Laughs] Let’s see. I used to like to sleep. [Laughs] Like I would sleep, stay up watching movies on TV and then go to bed late and stay up late and then sleep in late.
Tammy: That sounds so nice.
Mom: Yeah. [Laughing]
Grandmother: And I as the grandmother, prefer reading. Used to enjoy dancing but as the kid’s say, “Oh, yuck! Not that.”[Laughing] and gardening. I like to garden and just be current. Go on little road trips. I do fantasize having a palm tree in my front yard and a big lounge chair on each side.
Tammy: That does — especially during the winters. That’s a very attractive thought.
Grandmother: Yes. Not, not a real palm tree – artificial – so I don’t have to worry about it dying but –that would be happy. That’s looking at happy in my eyes. Joy.
Mom: If going ‘happy’, I want the in ground pool at the backyard. [Laughs]
Tammy: [Laughing]. That sounds good too.
Grandmother: Just a fantasy.
Tammy: Awesome. Well, I want to ask you to pretend you’re talking to families who are feeling lost. They don’t have a diagnosis yet for their child but they know something’s going on. I’m wondering if you could tell us what would you say to those mothers? What would you say to family members or relatives, grandparents? As families are going through this and trying to determine what’s going on with their child?
Mom: I would just say something that helped me was to just research, research, research. Again, the internet, I googled everything. You know and then we kind of fell into a support group that helped us. There was a children’s therapy center. We didn’t actually go there for therapy because our insurance didn’t cover it. But we found out that they have a support group there on Saturday mornings. So we thought, you know, let’s just go and try this and see if we can meet other people that have kids that may have issues that can help us and stir us where to go. And so that really was our saving grace.
Grandmother: That’s true. I find — getting into this in my estimation, doctors really don’t know a whole lot. And each doctor you talk to has a different field of expertise. And they want to lead you down the path that they think you should go. Even though it may not be the right path. And so you’ll go down that path and you realized nothing is changing. So then you go back and you try and find another doctor. You start all over again and hope for the best. And that may not be, it either, it, it just is — it’s been — with the support group and talking to other parents that have saved us in. It took, it took months before we were actually able to face the fact that well, my grandson had a mental illness. We did not have it at least recognized in the family before if it was there. No one knew about. No one was directed to any special person to take care of it. So it was new to us and we were, we were just lost. We were just– Basically, we were, we were out to sea and we have no life line until we found the children’s center and then we found out that there are other people who are in that similar situation that we’re in.
Tammy: I think one of the things with children’s mental health, in particular, — what you’re saying so far is true of any kind of illness, right? Physical, mental. If you don’t, it — just finding out what it is, you’re at sea until you know what’s going on. What’s particularly difficult with children’s mental illness is their brains are developing and changing. So even if you get a diagnosis, that might change. So you can be lost, found for a little bit, lost again [laughs]. I’m just wondering if you’re can talk about? Has that been some of your experiences as well? I mean it’s such a journey and how does having a support group help? Even once you find that support group — is that journey helped with the support group as well or…?
Mom: Well, I mean the support group has definitely helped us because there were periods where we would go through really, really deep lows with what was going in the family. Then you kind of get to a point where you can celebrate one day [laughs] One horrible month might have a good day and you need to learn to celebrate that. It just helped us going to the support group and talking with other people because they would sometimes say the same thing and we could learn that the kids’ behaviors might be based on seasonal changes – or just significant life changes.
Grandmother: Yes. Children don’t like change in their lives. And it often happens. They can’t prevent it. And they don’t know how to deal with it when it does happen to them. We found through dealing with all of this that we have to try to change with them and help them through it. Medication was a big thing. What might work for two weeks will suddenly not work at all and then you get another medication. Pretty soon several medications and it just does not work for their little bodies.
Tammy: Yeah. There’s so much changing at once, it’s hard to know what’s doing what. I think that’s right. What do you want people to know as their trying to navigate this? So reaching out is one thing. I’m hearing. How do you manage to have hope during that time? To sort of push your way through and take care of yourself during that time? Because it’s rough. It gets pretty dark, when you’re not sure what’s wrong with your child because we want our kids okay. We want to keep them safe.
Grandmother: And when you do find out, often times, you are, sad to say, shunned.
Grandmother: Because you have a child that’s different from most of the children in the neighborhood. And they look at you and say, “We know who you are but we prefer not to be with you because your child is different. Your child cannot relate to ours”. And, and in our case, we have a child who can relate better with adults than with children. – He can start talking to any adult on their level and I have had many of them come back to me and say, “What a nice young man you have there. Very pleasurable, very knowledgeable. Very nice”. But on his pure level, he just cannot communicate with them. They don’t essentially get him. And that has been extremely difficult for him and difficult for me because I know he’s trying so hard. But they just don’t see it. And oh the pain just hurts so bad to see them making fun of him. But I don’t, I don’t know how to combat that, we just go on our merry way as best as we can.
Tammy: Yeah. It’s so painful to see your child suffer, but when it’s out of the cruelness of someone else…
Grandmother: …it’s even worse…
Tammy: …it’s worse…
Tammy: I think because that can be helped, right?
Grandmother: It can.
Mom: A lot of it is just the misunderstanding. Because they don’t understand what’s going on with that other kid because the kid looks “normal”. They’re thinking, “Why is the kid doing those weird things. Why is he saying those weird things? Why is he acting like that?” Sometimes you hope that if you would just explain it to them, they would get it and they would understand more. And sometimes they don’t. And sometimes it just takes more education and they do end up understanding more and coming along and then they get a better picture of what’s going. I would still say just reaching out to other people because even in the support group we found a couple people within the group that we were able to reach out in really difficult times and just call them or text them or email them and say, “I need you to meet me for a coffee out my backyard”. [Laughs]. Because I’m barely holding on by a string. So just making that point with somebody else. To know that they’re there. And then you talk and you laugh for like 20 minutes. And then you could go back to doing what you were doing. You can go back to fighting.
Grandmother: Yes, it is important to have someone that you can maybe bond with over your problems that might have the same problem.
Tammy: Yeah, I think that’s important. So, we’ve been asking everyone this – and from my own experience, it changes from moment to moment – most people I talk to say the same thing – so at this moment, where do you find yourself? Do you feel like you’re swimming, drowning, treading water? Where do you find yourself?
Grandmother: At this moment, not last night.
Mom: I know. Because there’s never a dull moment. There’s always a new development. And always relates to social issues, I swear.
Grandmother: Well your 11th-year-old son likes girls now.
Mom: Oh my goodness.[Laughs]. Uhm, swimming, drowning or treading water?
Mom: Treading water. Today?
Tammy: Yeah, today.
Mom: Today, okay. As of this morning, we were swimming.
Tammy: Let’s talk about that. That’s a big deal because I, I find on my own experience – and I’m talking to a lot of moms – it changes…
Mom: By the hour.
Tammy and Mom: By the hour.
Mom: It really does.
Tammy: And that itself can be very almost traumatizing because you can’t play, you can’t think ahead.
Mom: It’s interesting because I was just thinking about that on the way here because I kept thinking it takes me longer to recover from an episode than it does him.
Tammy: (in a whisper) Yeah.
Mom: And so that was part of my thing today going. I need to try and regroup and get it together and pull myself together from one of the episodes that happened last night with him and other kids because of social issues. He recovered. He went to bed last night and woke up this morning and had a good day and it was fine and everything’s good. But the grandmother and the mother are still going [made a sigh of relief] “Oh, boy.”
Tammy: Yeah. What can we do in times like that? Because that’s true, right? There’s this all-of-a-sudden “okay, everything’s fine” and we’re like, “No, it’s not”.
Grandmother: You dropped him off. You thought things were fine. Yet and then you get the phone call.
Mom: Well, we were excited because he’s trying to reach out and make new friends. And he did make a couple of new friends and he was texting them on his phone. And so then it was one of those things where, “okay, he wants to get together with new friends”. And then you know, just in a course of like 2 minutes of him getting together with new friends, it took a really bad turn. That negative thing happened and then he was like, “I want to leave: you need to come get me”. Sometimes you think you’re doing so well and you think, “Oh good, he’s making friends. He’s reaching out and these other friends are reaching out to him” and then all-of-a-sudden you find out, in a bad moment, the kids really weren’t being friends or that other kids were involved and they were definitely bullies…
Grandmother: …taking advantage of him…
Mom: — “Oh, good we finally going down the right road”. But then you, and in just 2 minutes it subsides down and then you have to re-evaluate, weigh everything again. Yeah. So, reaching out because I will go out with two girlfriends tonight and have dinner and drinks. “That’s how I’m going to cope. I was going to cancel that because then my child was having some kids over and I said, “too bad”. My husband is just going take care of it because I’m going out with those girls. Because I need to go out with those girls. And then tomorrow, I’m going to go to lunch and a play with somebody that I know because if I don’t get out of the house this weekend then I’m not, I’m not going make it. Because I’m just at the end of my rope.
Tammy: This gets into the next question: what is your self-care routine, or if more appropriate survival technique?
Mom: Reaching out to other people and socializing. Because I have a husband and two boys at home that don’t meet my needs [Laughing] because they don’t communicate. They all have their own space. They’re very individual. They’re very alone. So then I am not able – being the social person that I am – to talk to them and just carry on conversations with them and to communicate. Because if they’ve done that all day in work or school, then they come home and they just want to come down and have down time. So I need to socialize. I need to get out of the house.
Grandmother: That’s good that you realized that.
Mom: I have, I have to do that. And I’ll realize after a few weeks, even if not getting out of the house, just being home every day taking care of the kids after school or after I get done working – I just realize I’m very alone. That is when I have to say, “I need to go out and get with other people”.
Tammy: I can relate. What about you?
Grandmother: I have my weekly get-out group. We meet at least once a week and we road trip or we do lunch here or whatever. I have my friends. Sometimes I just take a book. Leave my phone behind. Don’t hear the door bell and just go sit on my porch and I’m in Lalaland by myself. Sometimes you just need to get away from it and find a group situation and I — I do have a good group.
Tammy: Good. So we always end this question. I think as you’ve all heard before, I think we’ve all said this a lot – “If we didn’t laugh, we’d be crying all the time” [laughing].
Mom: Ah-hmm. Which is the honest-to-God truth, just us to get through.
Tammy: Yeah. And so we just like to open it up. Is there a laughable moment you’d like to share? Something that makes you laugh?
Mom: There are so many but a week ago, I put the beef roast in the crack pot and I had it all sitting on the counter and I had it all ready to go and then I turned it on and went to bed. And woke up the next morning and I checked the beef roast – it was still uncooked. I thought, “Oh! My gosh, it must be broken. After all these years I must have burned it out”. Well, my husband’s like “Well, it would have helped if you would have plug it in”.
Tammy and Grandmother: [Laughing]
Mom: So we had to throw away 20 dollars-worth of beef roast because I hadn’t plugged the thing in all night long. See know I can’t even tell you what that thing is because I have such brain fog.
Tammy: Right. Would is actually something to talk about? We probably should have a whole show on this because it is hard to think clearly when you’re not getting enough sleep, when you’re having these emotional up and downs constantly, right? It’s hard to think straight.
Mom: Uh-hmm. Yep, it is.
Tammy: So I can relate to not plugging something in. That seems completely normal to me actually [laughing].
Mom: You’re like, “Oh! Shoot.”
Tammy: Yeah [laughing]. What about you, what’s your laughable moment to share?
Grandmother: Well I guess, this morning. My grandson and I went to brunch and we went to this restaurant. Our server was very nice. We had gone there previously during the week for his birthday. We got the same server today that we had for his birthday. And when he came over to set the table he said, “Good morning Bruno”.
Grandmother: Who was our server. And he looked up at him and he smiled and he said, “Good morning”. And he said, “What would you like?” And my grandson rattled off what he wanted and what I wanted. He ordered for us and then Bruno left and he said, “You know granny, he’s a nice server. He’s polite, he’s enthusiastic, he’s smiling.” And he said, “I can name seven things that are positive and why he should get a three dollars five cent tip”.
Grandmother: And I said, “Oh, okay,” and then he named most of them. He said, “No, he’s very good”. And then all of a sudden, Bruno came back and he left extra napkins. Which is something that when my husband goes out, we always ask for extra napkins whether anybody wants them or not.
Mom: It’s an OCD thing. (He really has OCD’s so it’s okay.)
Grandmother: So Bruno must have recognized us and he had the napkins and my grandson is sitting there, “Thanks again Bruno. I appreciated that”. And he said, “your food will be out right away”. And he said, “I bet it will”. So it did, it came quickly and so then we ate and it was very good. And so we left a five dollar tip for Bruno.
Tammy: [Laughing]. I just love how specific his calculation was.
Grandmother: Yeah. He had seven reasons why Bruno should get it – but I don’t know why he picked three dollars and five cents.
Tammy: [Laughing]. I just loved that.
Grandmother: He’s good at Math but I didn’t exactly get into it.
Tammy: [Laughing]. Well, thank you so much. I really appreciate you guys sharing your stories.
Tammy: Thank you.
Grandmother: Thank you.
Speaker: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 by Mothers on the Frontline. Today’s podcast host was 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.