MOTFL 006 JAM 006: When they see your child as ‘different’ and turn away

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.   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 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. Tammy: Great. 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. Tammy: Yes. 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… Grandmother: Yes. 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 sam...