Parent of Three Kids Diagnosed with Mental Illness - ASK ME ANYTHING!

@MaineLonghorn is the parent of three adult children, all of whom have been diagnosed with a mental illness (ranging from mild to very severe). Two of her children have graduated from college, while the third had to drop out of school after studying biomedical engineering and applied math. He lives in supported housing in her area. All three of her children have given her permission to share their stories.

She is on the Board of Directors of NAMI Maine and speaks all over the state on mental health issues. She is also an ambassador for the ABLE National Resource Center (ABLE accounts are tax-advantaged savings and investment accounts for individuals with disabilities).

She will be happy to answer any questions dealing with mental health issues. If she doesn’t know the answer, she will look them up or direct users to available resources.

Are you a parent who accumulated expertise with certain schools or topics (e.g. financial aid, FAFSA, essay writing, test prep, etc.)? Do you have a unique story you want to share to help and inspire other parents? If so and want to be part of our Parents4Parents initiative send me a private message and we’ll connect on next steps.

I look forward to hearing from you! Please note that I will be out of town all weekend so if you post questions I will respond when I return.

@MaineLonghorn, thanks so much for accepting to tackle this very sensitive topic. This is more relevant now than ever. As cited by The Sacramento Bee, “a new report on thousands of university students across nine public research institutions in the U.S. shows how those challenges manifest internally, with more than a third revealing they have been experiencing significant mental health problems.”

Both of our sons have struggled with anxiety. Our oldest started having major problems getting work done after his sophomore year of high school, and has yet to fully find his footing in college. He did do well in a summer class, and hosts a podcast that has featured some well-known people in the film world. He’s been clawing his way back. Our youngest had similar problems in high school (although in different classes; he aced English classes). He has been an A student going into his junior year of college and is also doing very well socially.

I have zero knowledge on this topic so forgive me if my questions are too basic.

Is mental illness hereditary ?

Do all three young adults have a similar type of mental illness ?

Thank you for sharing.

Good questions, @Publisher. There are still a lot of questions as to the origin of mental illnesses. In our family’s case, the nearest case of schizophrenia we can find is my husband’s uncle, who developed the illness overseas in WWII. That is pretty far down the family tree, and from what I have read, too far for my son’s case to be considered hereditary. Ever since he was diagnosed, I have tried to understand why he got sick. He has none of the risk factors. He wasn’t born in the winter, there was no trauma at birth, we didn’t have cats (toxoplasmosis is thought to increase a person’s chances of falling ill), he had a happy childhood, etc. So I don’t think we will ever know what happened.

His younger brother was diagnosed with severe bipolar disorder at 16. He struggled with lots of hallucinations for a couple of years. He was on medication that he disliked intensely. Once he found his passion (helping Syrian refugees), his symptoms decreased greatly. With his doctor’s permission, he went off meds and has done OK. So that leads us to question whether his initial diagnosis was correct, because bipolar disorder is considered a life-long illness. His doctor still treats our older son. When I asked his opinion, he said that, “Your son is a mystery - I think about him a lot. He could have been misdiagnosed, but he sure had all the classic symptoms.”

Our youngest was just 12 when her oldest brother fell ill and 13 when her other brother was diagnosed. We thought we handled everything “correctly” by being honest with her about what was going on with her. She seemed fine. She continued to do well in school, she had lots of friends, and she assured us she was fine.

When she was 16, though, her Girl Scout leader called and told me she thought our daughter was struggling and needed help. The woman gave me the name of an EXCELLENT counselor who thought our daughter had anxiety. We took her to the same doctor who treated our sons and he agreed. She had a couple of rough years, but she is doing well. (She later told me, “Mom, I knew you had your hands full with my brothers, so I thought I had to be the ‘normal one.’”)

Oral contraceptives initially helped her a lot, more than anti-anxiety meds. Now that she’s older, she says the anti-anxiety meds are also important. I know she’s doing better, because in the past, “Mom, I’m so stressed!” was a constant refrain from her and I haven’t heard her say that in a long time, even after her senior year in college was abruptly interrupted by COVID-19. Her future is up in the air right now, but she is handling everything well.

One of my main messages to parents I speak to is that if your ill child has siblings, GET THEM HELP! At least insist that they talk to a counselor for a few sessions. It is really important. I can’t describe how shocked I was to learn my daughter was struggling - that’s how well she hid it.

Also, mental illness can be a matter of life and death. Today is the fifth anniversary of my nephew’s death by suicide when he was 20 and seemingly doing well. He had been in therapy a couple of years earlier - I wish he had continued.

@mstomper, thanks for sharing. I’m glad your sons are getting help. Anxiety can be so crippling. I know it has been hard for me to understand. When my daughter was so paralyzed she couldn’t make a phone call, I just didn’t get it!" “Just call!” I felt like saying, but I knew that wasn’t helpful. So I try to listen and support her the best I can. I do tend to prod her more than I would, otherwise. She was a little anxious about filing for unemployment, but I kept insisting she do it, and she got a lot of money as a result.

It has been challenging to know how much to support our kids, since we brought them up to be independent and assumed they would be in their 20s! It’s a constant question for me as to how much I should get involved. I take one day at a time and just pray I make the right decisions.

Does exercise help ?

Yes, it’s definitely been shown to be helpful. Our middle son has found it to be true. It’s been challenging for him lately in Beirut, though. His apartment building has a gym, but it’s closed due to COVID. And the city is still a disaster after the explosion, so it’s hard for his girlfriend and him to run outdoors.

Our oldest was an excellent runner in high school. He feels (rightly or not) that his illness was partly caused by his obsession with running, so he doesn’t like the idea of intense exercise. He walks a lot, but I’m not sure how helpful that is.

I’m so grateful to MLH for sharing her expertise here. I have dealt with some issues with my D and it is a long and lonely road. I will echo MLH advice to GET HELP. Don’t be afraid to ask your child’s pediatrician, ours was so helpful and so nonchalant about referring us to someone. It really helped us feel okay.

Regarding heredity - my father is one of 7 children, 6 boys and 1 girl. All, except my father and one uncle, were medicated and/or diagnosed with mental illness at some point in their lives, primarily bipolar. One uncle was also diagnosed with schizophrenia and given shock treatment, when that was an accepted method of treatment.

In most cases, the mental illness was hidden until a stress event, which then began a lifelong struggle. My aunt spent her final 20 years in an institution, one of my uncles became a widower and spent the rest of his life in an assisted living home.

I strongly believe that, in our case, heredity has greatly increased the potential for mental illness, although it seems a catalyst is also required. My father’s mother was an orphan as her mother (my great grandmother) was apparently put in an insane asylum.

My father was a huge believer in nutrition and took a wide variety of supplements. I can’t be sure but it is possible that something he took helped him avoid the family illness. Unfortunately, he took so many things, its impossible to know what that was.

While my siblings and I haven’t had signs of bipolar disorder, yet, it’s likely that we carry it. One of my kids has been diagnosed both with bipolar and anxiety. She is on medication and still struggles at times. The stress of boarding school may have been the catalyst for her, but she believes that it began earlier and I just didn’t recognize it. Either way, I worry about her constantly and I empathize with all parents facing this challenge.

Lastly, I appreciate this thread and the help that @MaineLonghorn has offered in recommending NAMI and also in sharing their experiences.

@Publisher I’m an embodied trauma therapist and I get the ‘does exercise help?’ question a lot.

IMO, it is MOVEMENT that helps, not exercise. As humans, we have evolved to move in a variety of three dimensional and unpredictable ways. We also develop various movement patterns organically as we grow from babyhood (crawling, getting up and down from the floor). As modern adults, we use few of these, even those who are very fit. This limits our range of experiences in the body: it is only when we feel and embody something that it can then become real for us. Exercise also places another demand or stress onto already stressed people; movement is a way of managing that demand.

I encourage my clients to find movement that works for them, and much of this depends on their trauma and how it is manifesting (fight, flight, fake, fawn, fix, freeze, flop). For example, sexual assault survivors often respond well to boxing and martial arts, as this embodies the fight response which they so desperately wanted to use when under attack but were unable to. It gives them a feeling of power, and also releases anger and associated chemicals in a helpful way.

Those with ‘flight’ tendencies often enjoy running as it removes the adrenaline that drives the constant busy-ness. The downside is that ‘flight’ types are often controlling ‘fixers’ too, so running can become an obsession, which adds more stress to their lives. Those with the freeze tendency (such as ML’s D above who simply couldn’t make that phone call) respond well to very gentle, soft movements that allow the nervous system and muscles to gently unwind: yoga, Feldenkrais, Tai Chi, walking.

People who grow up in chaos (no food on the table, unreliable parents who not there for them, warzones, ill siblings… ), crave structure. It makes them feel safe. Movement with rules helps: hatha yoga, martial arts, weight lifting. Those who grow up in overly controlled environments need freedom: conscious dance, jogging, hiking.

As social beings, community is an important part of stress management and health. It is why every mental health narrative is about ‘talking to someone’ or ‘asking for help’. When you combine movement with community, this is uber powerful! Hence the popularity of running clubs, yoga classes, my dad’s ‘rambling group’ back in England (rambling is slow hiking), cross fit boxes etc. Kelly McGonigal, Stanford professor, has a book and a number of podcasts about the power of group movement.

Finally, movement does not replace medication and talking therapy. Talk therapy is needed to make meaning from our experiences and to integrate them. Medication can also be needed to help regulate the body/mind/nervous system, so the individual is in a place to respond to other interventions. Baseline self care is also non negotiable: safety/security, diet, sleep, being outside in nature, group/social support, finding a sense of meaning/purpose.

@CollegeMamb0: Thank you for your insightful response.

Do you recommend exercise for caregivers–such as parents–of those suffering from mental illness ?

Do you have any thoughts or advice about diet ?

@MaineLonghorn: How do you deal with stress ?

@HMom16 thanks for your observations about heredity. I know my daughter is very hesitant about having kids now after seeing her brothers struggle. Hard to blame her.

@CollegeMamb0 great information about movement! I never thought about recommending yoga or something similar to my daughter. I will suggest it!

Oldest with schizophrenia paces a LOT. The staff at his apartment building has mentioned it. I’m not sure how healthy it is in his case.

I really don’t have much to add, other than to say you are an amazing mother! Thank you for openly discussing this difficult topic. You really have the potential to save so many families and lives. I have a cousin who struggles with social anxiety …I wish my aunt (his mom) had handled it like you do.

The pacing for your oldest is likely soothing for him. Are you able to ask him how he feels when he does it (not why he does it)? Rocking and humming are similar self soothing or self regulating practices. Ever noticed how calming a rocking chair is :smile:

@Publisher - I am not a dietitian… however, the Mediterranean diet and variations thereof seem to have the most beneficial impact on people. Veggies, whole grains, protein, limited sugar and alcohol. Eating in a communal way, sitting down, taking one’s time. Cooking can also be calming, soothing and grounding. I also advise against unnecessary restriction or elimination of foods (except free sugars and alcohol) as this leads to other issues, can be a source of stress itself, and also limits the variety of foods to feed the gut microbiome. A lot of research into how a well functioning gut helps mental health.

Two things that need to go: alcohol and caffeine. I am horrified by the level of caffeine dependency in our young people (incl mine). Caffeine is a psychoactive stimulant and raises baseline hyperarousal (fight or flight), making us more susceptible to stress. Alcohol is a neurotoxin that should be kept for rituals and celebrations, not used as a daily stress reliever. I know these are unpopular statements by the way :wink:

And yes - caregivers should absolutely also be looking for ways to regulate and soothe themselves in response to the demands placed on them by family members and friends who are suffering. Movement, support groups, diet, sleep etc. Looking after those who are in need can be very stressful, even for those with training / in care based professions. I have several clients whose trauma comes from unregulated or inappropriate caregiving in some form.

Eliminating sugar & alcohol makes sense.

This may sound trite, but my immediate family members swear that drinking lemon infused water has a very positive effect on an individual’s mood and cognitive abilities.

P.S. @CollegeMamb0: Despite your cautionary advice about caffeinated products–such as my beloved black, no sugar Starbucks Coffee–we can still remain as friends. :smile:

@MaineLonghorn Do you have any suggestions for getting a delusional 23-year-old into treatment? My son has occasional emotional breakdowns but has not had a full-fledged psychotic break. He’s semi-functional at this point, is doing well in online community college courses but has been unable to hold a job for an extended period of time and has no real plans for the future (well, at least not any “normal” ones). He was receiving treatment for about 4 years as a teen and did pretty well on Abilify. Around age 18 he stopped taking medication and has refused to consider any type of medical treatment since then. He self-medicates with marijuana (and sometimes hallucinogens) but thinks prescription medication is poison (has accused me of trying to kill him by making him take meds). To his credit, he exercises regularly (including running, street gymnastics, and Qigong), meditates, and has an excellent diet (has been vegetarian/vegan for several years and cooks his own healthy food). I have the book “I’m not sick, I don’t need help” and have gone through NAMI’s Family to Family course but I’m still struggling with dealing with him. Maybe therapy for myself is the best course at this time, but I’d appreciate additional suggestions. Like your oldest, my son paces a lot, and has done so since childhood (about age 5 or 6).

Thank you for sharing and being so open about your children’s struggles.

My older daughter has a pretty severe anxiety disorder. She also has pretty severe adhd and for a while chose the route of medicating the adhd and using talk and cognitive behavioral therapy for the anxiety. She recently let us know that she was still struggling more than she wanted and asked her psychiatrist to start anxiety meds. She’s now on prozac but is having physical side effects that make me wonder if she’ll be able to stay on it. She gets especially anxious about illness and death, so covid has been an extra challenge for her.

I have pretty extreme anxiety as well, in addition to also having SPD and ADD (the phone story could be me- I had a total break down a year ago because I had to call FA at my daughter’s school and just could not do it- she finally handled it herself but I felt like I let her down). My husband has some definite undiagnosed mental issues that hopefully he can finally get help for when he retires in a few years. Growing up with him (and probably me- I acknowledge and manage but my issues persist) was hard on my girls and I know that my daughter works through that often in her therapy.

I have often worried about my younger daughter. She has seen a psychologist and deemed to have no anxiety or adhd, but she deals with a lot with this family and I have wondered how it affects her. She doesn’t make friends easily, spends most time not dancing/working alone, and is super sensitive to lights/sounds/tactile things/change… to the point that I worry about college and a roommate. She says she fine and the doctors say she’s fine so I feel stuck with that worry.

Anyway, you seem like an amazing mom, and thanks again for being so open.