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 Grandmother who is raising a grandson with mental health and learning disorders.
Tammy: Okay. Alright. So just to begin, just tell us a little bit about yourself before or outside of mothering, just about who you are.
Grandmother: Okay. I’m a mother of two boys who are grown, and um, they seem to have a fairly happy life, one has moved back to go to school, and one of them is still living on his own. After my second marriage, my husband had a son, who was a substance abuser and he abused his young son when he was very small. And we took him, in fact we took him because his father asked us to take custody of him so he could get back at his wife for doing things he didn’t like. He didn’t really think we should take him, he just thought that this legal thing would make his wife afraid to talk to anybody. And we got the papers and our lawyer talked him into guardianship, which means you can make all decisions for the child, and when he was hit and really, and really only minorly, we said, “You don’t have to go back.” And he was very happy about that, and he recently told his psychiatrist that was the happiest day of his life. He was six at that time. We have had him now, and he just recently turned eighteen, and he’s moving into this town to live in supervised housing, because he has mental illness and he has intellectual disability. And so he needs to be supervised twenty-four seven, and they offer quite a bit of other programs, things for him to do like go to a parade, or go to the park, or—really not things that cost a lot of money, although occasionally they do, but they get passes to the fair and — what not. And so this is his first day, and he’s very happy about that.
Tammy: Wonderful, wonderful. What would you like people to know about your experience?
Grandmother: I would like them to know that often, children only show the surface of what’s going, we sensed abuse but it was only later when he told us– about a month later, he told us he had been sexually abused, about a year and a half later he told us that his baby brother who had died of SIDS was actually murdered. So he was keeping this all inside. We needed to get help for him, and I really would like mothers to know that, although it just breaks your heart to take a small child to be in residential treatment, that sometimes it’s the best thing and it’s definitely not a horrible bad thing. He was kind of like, “Bye, mom” (that’s what he called me already. They said he cried a little that night, but that’s all. And he learned so much in the various times he was in the residential treatment, and the last time he was in he got into a program that was for both mentally and intellectually problematic children. And I wish there was more because, to my knowledge, it’s one of the few places that has that, and he’s in a– was in place that only took care of eight children.
Tammy: How did that help him? Like, what was positive about it?
Grandmother: One of the best things he learned was coping skills, which as a peer support specialist, I know is one of the first things you teach people who have mental illness is how are you planning on coping with this? It might just be cuddling with a soft warm blanket, it might be setting boundaries with other people that says, “I will not pull up with that.” It might be a warm bath, it might be running or doing yoga. Everybody has their own, but you teach the children that we are all unique, and they have coping skills that they can use. And they teach parents the same thing, because when you put a child into residential care – or a lot of times they don’t get to stay as long as he did – but when you put them in, they have a goal in that time which is often 9 months to a year of learning these coping skills, which they then come home and use, and you’ve been learning them also.
Tammy: Right. So in trying to get help for your grandson, what kind of things were either barriers you ran into, or really great successes that helped you? So it sounds like one success was a residential home for him, were there any other things that either were really helpful or didn’t go so well?
Grandmother: One of the barriers was — and many mothers and fathers and even grandparents like myself, don’t know that you cannot take a child to the emergency room and say, “You can’t believe how this kid has been behaving this last month.” That does not count. A child has to have an acute problem to be admitted to the hospital which is often the best place to go, especially if they have a children’s ward for mental illness, because that way they can have their meds adjusted, which is a difficult thing to do at home. The doctor we had took him off of everything, and then slowly added things back which could be dangerous actually. So we were told- and thank God we were told- “Don’t ever go in and say: “You won’t believe how it’s been for the last month.” You have to say, “Yesterday,” – not even ‘yesterday’- “Today, my son woke up and he is been talking about suicide.” He was only seven actually when he first did this, and he wanted us to die too, because he wanted us to go along with him, he didn’t understand death. When we said, “No, we wouldn’t do that”, and tried to explain death to him, he said, “Well then, I’ll take my cat.” We woke up in the morning and he was quite angry and I went in the back room and he was trying to strangle his cat.
Tammy: Oh, my goodness.
Grandmother: He had been acting up in other ways too. I can’t remember right now what they were but that was a clue that he was saying, “Mom, I’m so suicidal.” So I lied, I called the doctor the next day, because we were completely snowbound and had been for several days, we live in a country and our roads weren’t cleared, there was no way I could get him to the hospital, so we just watched him all day, all night, and then I called the doctor in the morning. That night he was still agitated and he had bit into a light bulb, because he wanted a weapon to fight bad guys with. He though glass would be a good idea. That was another escalation of saying, “Mom, I am really hurting, and I’m really scared, and something has to be done.” So I called the doctor and I said, “He did this and he did that”, and I made it sound like it was simultaneous, and it just happened that moment where it has actually happened the day before. Fortunately, he was young enough not to even know the truth, and so when I’m rattling off to the interviewer at the hospital, they are like, “okay” So I think that’s important for the parents to know, if you want to get help for your child other than outpatient help and which I think it’s vital if your kid has any sort of difficulty: ADHD, Tourettes– any of those things–you need to be under their care of a psychiatrist who understands the medications they are on. But if they need to be hospitalized, you need to know how to do that.
Tammy: You’re right. That’s actually a common story that I hear, and personally have been through as well. If you don’t use exact right words, right? At the exact right time.
Grandmother: You need to know the words.
Tammy: Thank you. That’s really an important thing to hear. So we ask people as they’re dealing with this – we understand it changes as you’re going through this, how you are doing changes throughout it – but at this moment do you feel like you’re swimming, treading water, drowning – where do you feel like you’re at in your journey?
Grandmother: I feel like I just got out and toweled off, because my kid is, today, in a group home, where he has twenty-four hour supervision. He is not healed, but he is able to cope with most situations. He knows what to do when he’s angry, what to do when he’s frustrated. He even tells me sometimes. Maybe my husband and I have words, he’ll say, “Mom and dad, stop that! Use your coping skills.” [laughter] and he’ll guide us. Like, one day I said to my husband, the next day, because sometimes it’s best not to fight in the midst of it, I said, “You know? What you did yesterday really bothered me and I would appreciate it if you would do such and such.” And later after we had this little talk my son (my grandson had been listening) and he said, “Good job, mom.” [laughter] He’s come a long way. We got him when he was six. He’s now eighteen. He first stint in residential care was about nine months. When he was seven. It was very hard to leave him. And maybe it’s even harder for parents as opposed to grandparents, but I knew we couldn’t handle it, I knew he couldn’t handle it. We were in a mix of financial changes in the government, so how we went about it was problematic, but we had it done. We got it done and we got him in there for nine months and he came out a somewhat better person. He went back exactly a year after he had been admitted before and we realized that that time that he was probably cyclical. Some children don’t even know what day of the week it is or what day of the year it is, but his bad time was October. When the leaves fall, when the nights get darker, he had sensory things that said, “This is when I had my bad time when I was little.” So every year – and it’s gotten much better – he has had a bad time, actually from October till spring.
Tammy: Is that helpful at all on predicting? I mean, as you were taking care of him through all those years did that help you anticipate those months? Did it help you prepare for that more a little bit, or?
Grandmother: It did. At least we were ready for it. But every year it was less. So we’re prepared for what it was last year and the next year it’s a little bit better. Now I just recently bought, and he has never experienced it, but I bought him, one of those all-spectrum lights, which is supposed to be good for depression –that’s one of the things he suffers from. He has bipolar disorder. He experiences anxiety to a high extent sometimes, and he has just like regular depression as opposed to bipolar, and, a bunch of other [conditions]: attention deficit which is difficult, and he has difficulty learning. But every year gets better, and every year he tries harder, and so we’re looking for the worst and, bam! He’s a little worse, a little crabby, can’t sleep quite as well at night, but it’s no big deal.
Tammy: That’s great. So that’s really encouraging to hear that it can gradually get better each year.
Grandmother: Yeah, it did with him. And I think he will probably have this his whole life, bipolar is hardly ever something that goes away. But you learn what type of bipolar disorder they have and how they react as kids mature, I’ve heard of mothers especially say little girls have more of a problem, because of hormones and self-worth. Our boy got worse in early puberty, but he is such a gentleman now, it’s just—it’s wonderful.
Tammy: We like– we, parents of younger kids, really like to hear these stories. [laughter] I have to tell you. So what is your self-care routine, how do you take care of you when all this stuff that’s going on?
Grandmother: I will have to say I’m bad about that. But one of the things I remember because I also have, experienced depression and anxiety. I went to a psychiatrist and got medication. Mine is the type that I may not have to take it all my life except for one of the antidepressants helps with the pain I have it, from Fibromyalgia, which I think that many autoimmune diseases happen to mothers and grandmothers who are highly stressed. So every once-in-a-while I will make my needs known and say, “Do not wake me up in the morning.” My husband is an early riser, he likes to get up as soon as the sun is up, and sometimes he listens to me and leave me alone. [laughter] Another thing I try to do is do what I enjoy. I belong to a group that does art. I’ve never had an art class in my life. They didn’t have art when I was in school. I went to a parochial school and I won one prize in art and that’s because I picked up the wrong crayon and drew the sky dark blue. So they figured that I must have some inner angst of some sort. [laughter] But I just piddle with it. I love what I call fiber arts because it’s fun to call it an art, whereas it’s just working with thread. I like to knit. crochet, do a little quilting, and every once-in-a-while I’ll see some real arty stuff done with a little bit of yarn and a little bit of something else, and I’ve never done a piece, but I think it’d be fun.
Tammy: Yeah. That be a nice now that you have much more time on your hands, right? [laughter]
Grandmother: Yes, yes.
Tammy: Wonderful. And, you know, the only way we get through some of this is just by laughing sometimes. What’s your most laughable moment?
Grandmother: My most laughable moments have been with my child, with my grandchild. He’s a funny kid. This one didn’t happen when I was there, but when he had his going away party there were loads of people there, even people who had already quit and gone on to grow in other areas. They said that he had been invited over to another cottage one day, because periodically they give kids a rest from their caregivers and they give their caregivers a rest from the kid, and he had a particular cottage where he liked a lot of the kids and he liked the caregiver. He went over there (and he was no longer doing it but he was aware that kids do) they kick holes in the walls. They do all kinds of stuff that—actually he never did it at home, he did horrible things at home but he never dared to kick a hole – but when he was first there, he probably did it once a week. He went over to this cottage and there was one hole on the wall, and I had hoped that maybe he’d learn a little bit of maintenance and stuff while he watched the people constantly repairing things. [laughter] So he said, “Don’t worry, I’ll fix it.” And he got some card board, and he got some crayons and he taped it all together and he wrote on the thing, “Secret tunnel.”
Tammy: That’s the best one I’ve heard yet. [laughter]
Grandmother: And it’s things like that make me laugh, because he’s so funny. Sometimes even his mental illness is funny, and he’ll say, “Don’t make fun of me, mom.” And I’ll say, “I’m not making fun of you, I’m laughing with you because you are a delightful child.” He’s unusual, he’s different, and we try and praise that in him, that he should be who he is. And he’s a funny kid, he’s an outgoing kid, he’s polite, and let’s not look at the fact that he has trouble learning, he’s a beautiful artist even better than I am [laughter] umand he enjoys doing things for other people.
Tammy: That’s wonderful, that’s wonderful. Well, Thank you so much for sharing your story with us, I really appreciate it.
Grandmother: Okay. 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.