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

Parents Forum Learning Differences and Challenges - LD, ADHD
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@silverpurple, all NAMI class and support group leaders are volunteers. I have led several classes myself. :slight_smile: We don’t expect any gifts!

The most helpful thing you could do would be to join your STATE chapter of NAMI (not national - they don’t send money to the states). Having more people on their rolls is helpful when they go the statehouse to lobby for mental health bills. That would be very appreciated!

Most grants and donations that state chapters receive come with strings attached - suicide prevention, veteran support, etc. They can’t use the money for overhead costs. So they need additional financial support in order to pay staff, keep the lights on, etc. It’s tough.

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@MaineLonghorn D is definitely willing to see a therapist, and all I need to do if look up some names in our network for her to contact. When things are good I don’t feel the pressure to do anything and when things are bad, I feel overwhelmed. But I think it more likely than not, I’ll eventually move forward.

I did not know about NAMI. I am looking at the classes. It looks like NAMIBasics might be the most useful since it covers anxiety disorders but says it is focused on caregivers of children and teens.

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I just wanted to thank you for starting this thread. So many posts in the vein of, “I got into every single Ivy I applied to, in addition to winning the Van Cliburn competition and being annointed as the Messiah! Ask me anything!” Thanks for opening up the conversation about the very real and common problem of mental illness.

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NAMI Basics is for family members of younger people. NAMI Family to Family is the corresponding class for family members of people 18 and over. Anxiety disorders are covered as well as other mental illnesses.

@parentologist, you’re welcome. It’s nice to hear from others in similar situations.

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To give you an idea of how horrible schizophrenia can be, here are direct quotes from my son today:

"My mind is really slow these days, like a drip, drip, drip slow.

That’s my tragic heartbreak, feeling useless all the time. It’s because I’m thinking slower. When I was a kid, I thought fast. That’s why I went into biomedical engineering. I still think logically, but slowly.

I do better when I’m around Dad.

I feel like I’m barely functional enough to live on my own."

He also said he’s not comfortable going outside. He walks inside of his apartment but doesn’t go outside except to go up to the office.

Ugh. I’m really worried he won’t be able to live on his own much longer. ?

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Just want to mention again the Psychology Today therapist finder. It lists psychiatrists, psychologists, nurse pharmacologists, MSW’s and LMHC’s.

There are photos and each provider writes a blurb. Education, years in practice insurance info, and specialties are listed. You can use filters, for instance, for insurance, or for the focus of the practice.

I have found therapists for my family there and then googled reviews. It has worked out pretty well.

For shy people, you can send a message directly to the PT site. Often websites for providers are also there and messages can be sent there too.

It can be okay for a parent to send a message first. Obviously for over 18’s confidentiality kicks in, but I have found that providers are aware that a first contact is tough for young people struggling.

I then give the person’s name, phone number, website, schedule and so on to the family member in need and at that point they have to make contact. When they were younger I would make the appointment but now I don’t do that, unless the problem is severe.

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Certainly the PT listings are a good start. But it’s worth mentioning that it’s a commercial directory. and the only thing Psychology Today checks before they list a therapist or other mental health professional is the lister’s license. So googling is important!

Here is the PT website for professionals who want to purchase a listing:
https://member.psychologytoday.com/us/signup

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A podcast that I have recommended for finding a therapist:
https://www.wnyc.org/story/advice-caring-your-mental-health/

(For what it’s worth, I found my therapist by asking 5 friends for recommendations. The therapist I wound up seeing transformed my life–really!–and I wound up studying for a master’s degree in social work at a very advanced age and now I work as a therapist at a mental health clinic in Brooklyn, NY where I live.)

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Something that I am struggling with is that my childhood history makes it more difficult to be good advocate. I grew up with and was the caregiver for a single parent with severe mental illness (psychotic episodes), but who could also be very high functioning. This parent succumbed to depression 30 years ago and I had thought I had successfully shed my coping mechanisms years ago. Coping mechanism was emotional disengagement, to the point of becoming an automaton—necessary to do difficult (ok, horrible) caregiving tasks. This summer when my child had a couple anxiety attacks (really extremely mild in comparison to my parent), I could feel that coping mechanism getting flipped on. I am aware of it and I know why it happened, but it presents an additional challenge.

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@liska21 I am so sorry about your childhood. (((((hugs!))))) You have so much self-awareness of what’s going on that it sounds like short-term therapy might be really helpful for you to recognize and reframe the triggers from the years you took care of your mother. Best to you!

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Yes, hugs, @liska21. I always feel for my NAMI class members who are there because of an ill parent. So tough.

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Absolutely google and interview prospective therapists, regardless of where you hear of them. We have found the lists provided by insurance to be outdated. College crisis counseling centers don’t seem that helpful. Even after hospitalization my kid didn’t receive referral to a therapist. And referrals from friends get weird when the friend is still seeing the therapist, or even if they saw them in the past. So Psychology Today has indeed been a place to start. Friends who are therapists all seem to use it to get clients.

As for childhood issues: my father’s suicide hangs like a dark cloud over any depression (and certainly one suicide attempt) in my family. I think I have taken one of my kids to the ER more quickly though, when she expressed intense suicidal ideation, so in that sense my father may have saved her life.

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Sad day here, our homegrown local TV meteorologist commented suicide last night
she never got over her teenage son’s suicide a few years ago. So heart breaking.

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Thank you so much for this post. I am a parent of a rising senior who likely has Borderline Personality Disorder, with co-occurring anxiety and depression (no official diagnosis of BPD due to her age, but her symptoms meet the criteria). She has improved a lot with intensive DBT therapy, but still has a long way to go. I am also a member of and a volunteer peer educator for NAMI- NYC Metro.

We are in the midde of the college application process right now and I have a lot of questions!

What factors were among your top issues when deciding which colleges to apply to or to attend?

How did you get comfortable with deciding how far away your children could be? Some of the colleges on her list are within a 3-4 hour drive, but there are several that are a plane ride away. She is stable now but we worry about needing to get to her in an emergency.

How did you arrange for continuing therapy and psych care while your children were away at college? One of the best things to come out of this pandemic is the ability to get care virtually, but maybe it would be better to have a therapist that our daughter could see in person weekly.

How did your kids handle their meds while living in shared spaces like dorms? Also, my daughter sleeps a lot (pretty common for BPD and others struggling with mental illness). How did your kids manage the roommate situation?

Thank you so much for taking the time to answer. I cannot tell you how validating it is to see this post and know that other families have navigated this situation.

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Is BPD care covered by insurance yet, or is is still billed under anxiety or depression? I know that in the 2013 DSM, Axis II personality disorders were not covered and there was some advocacy going on, as well as research geared to legitimizing the diagnosis with insurance. At that time BPD hospitalizations were sometimes out of pocket. How are things now?

Colleges vary so much in what is available. Surprisingly one very small artsy college had a psychiatrist and therapist on staff in their clinic. Larger universities including Ivies tend to have a mental health staff but may also refer students out. Student insurance may have co-pays that can become onerous, and some therapists may be out of network, which may cost more.

We bought a small lockbox for meds but honestly not sure if kids used them! I still handled prescriptions for the first year. Starting freshman year was enough for them to handle. By graduation they were completely independent on this.

Is she eligible for accommodations through the Office of Disabilities? If so, then registering with that office is important. We honestly found that it was very very hard to tell how good a college would be in terms of health or mental health, before actually attending. Others may disagree. And we also found that the main source of help is NOT the Office of Disabilities but usually a dean of some sort. The O of D will provide a letter for your daughter to give professors but the conversation is up to her. She is not required to tell profs her disability, but the info is on file.

We wrote our own letters for the O of D to request accommodations, and the relevant professional signed it. The doctors never minded this and actually appreciated it. I got lists of accommodations from googling!

Distance is a difficult one. I felt strongly that my kids should make their own choices and that in the spirit of the Americans with Disabilities Act, should not be limited in choices due to their “disability” whether medical or psychiatric.

One went to school 3 hours away and honestly it was stressful for me, but not for her, so that was key. Whose stress is it concerning distance? :slight_smile: She had been in the hospital 6 months prior. My other kids chose schools an hour or so away, much to my relief- but I tried not to say a word to influence!

Some kids need an environment that is small and personalized, and some need large and anonymous. It is hard to generalize. We always took our kids to the Amherst MA area so they could see a large state school, a small liberal arts school and an alternative college all in one day. They didn’t apply to any of them but it was a start. I think urban/suburban/rural, rigor and competitiveness, academic and extracurricular quality were all important considerations. We visited for the usual tours and info sessions but hung out on the green, in the dining hall , library and bookstore to get the vibe.

It would seem that a very rigorous school with lots of work should be avoided, but then some kids thrive with that. Again, hard to generalize.

Good luck. It’s tough. I think even tougher without a diagnosis as yet. BPD is tough that way and a lot of people don’t understand it.

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@Nagpie, I’m so glad you are asking these questions. Our journey was a little different since my son was already a college freshman when he developed schizophrenia (he had NO problems in high school).

Once his university health center told us they were very concerned for him, they gave us recommendations for psychiatrists. We found an excellent one (we know we were lucky). She saw him until he had to drop out of school the following year. Then he enrolled in a school in our town.

We found the Office of Disabilities at both his schools to be very helpful, so I guess it depends on the specific college.

My personal opinion is that it’s good to have a child with a serious mental illness nearby. It was excruciating trying to help my son when he was 2,500 miles away. The second semester of his freshman year, he was hospitalized. He was in the hospital on Mother’s Day. That was a bad time. Having said that, every child is different so I can’t say that every child should stay close to home.

D got counseling at her college and she said it was excellent. There was supposedly a limit on the number of sessions, but they never cut her off.

And yes, BPD is very tough, so hugs to you. I’m so glad you’re involved with NAMI.

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@Nagpie415 My D will be a senior in college and I can tell you that she opted to get accommodations to have a single. It was not just one Dx (and BPD is suspected but her MD felt like we didn’t need to label it as such. We did a year of DBT which was helpful). She also has misophonia, OCD, eating anxiety, and previous depression.

She is also a “highly sensitive person” which may not be in the DSM but I think it goes with the constellation of other conditions. She needed a place to retreat to after being in a stimulating classroom or event. She LOVES her academics but definitely spends a lot of time alone in her room. She does not socialize much in person, which makes me sad but I am trying to ‘love the kid on my couch’ and not the type of person I was in college.

She manages her meds herself but she is pretty local, only a half hour away. We are lucky that there are several schools she could have attended that we closer to us. Her freshman year she did come home once or twice for a day just to see the dogs. I would also go up and take her out to dinner and let her vent and that was helpful.

She actually liked dorm life in a single because she was finally in a situation that she could control. She could eat when she wanted (didn’t need to work around when I cooked for the family etc) she could study when she wanted, didn’t have to do last minute chores or dog walking for me etc.

I don’t think she would have wanted to go more than an hour or two away and to be honest, we did not even think she would last a week at school, as she had never done a sleepover or camp successfully. She maintained her same therapist for a while and then switched to one of the schoool counselors. Good luck!

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@MaineLonghorn (and others) - Thank you for offering to answer questions.

Are you able to share any guidance or experience with respect to addressing “special circumstances” for financial aid on the CSS profile of a younger sibling? My understanding is that the form asks for an annualized dollar value to be assigned to the additional special financial obligation. The older sibling is in college and about 12 months after diagnosis with a psychotic disorder. I’m not sure it is possible to estimate an annualized financial burden when future independence cannot be predicted.

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@KaiserS, I’m not much help since we never filled out a CSS profile for my son’s brother or sister. And we were fortunate to get my son on SSI and Medicaid, so his care was never a burden.

I’m sorry to hear about the older sibling - I hope he does well in college.

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I filled out many CSS Profiles. I am not, however, sure how colleges view future burdens. I would call the financial aid office. They should have a representative you can talk to.

Colleges do vary on this. As an example my husband had a stroke during the year before my youngest entered college. Some colleges only look at the year BEFORE that, so we had to pay quite a bit even though the stroke had cost my husband’s job and we essentially had no income at that point.

Another college, and this may be more true of colleges with a CSS Profile with a special circumstances section, adjusted our contribution quite drastically due to the stroke.

I remember also emailing with our financial aid representative and got to know her over the years because things kept happening :slight_smile:

So sorry you are dealing with this, and your son, and hope that some treatment is helping.