Thing 3

This Is What They Mean When They Say Our Mental Health Care System Sucks.

Several weeks/months ago I finally decided…I am past my own skill level in helping my child with his anger and aggression. It’s time for professional help. I can’t remember if I decided it on my own, but I think it was probably with the help of my Twitter friends. Oddly enough, Twitter is the place I go when I’m my most vulnerable. And I have yet to be disappointed with the feedback I get.

Anyway – that’s a big step. Admitting there’s a mental health issue that your child might need help with. My defensive instincts felt like this was was another way of saying, “I suck as a Mother.” Logically, there is a part of me that knows that’s not true. But emotionally? Admitting I needed help? Was like admitting failure to my child.

But…I made that step. I admitted I needed help. His violence and aggression towards me was not getting better and I didn’t want him continuing these habits into adulthood. It made me feel better when someone compared it to having an obese child due to their own bad health habits. “You wouldn’t want them carrying their obesity into adulthood, right? You’d want them to learn better habits as a child, before those habits settled into any sort of permanence.”

So! I admitted I needed someone to help me, help him.

I pulled up my insurance and did the whole “find a doctor” thing. I selected my “network” based on the letters on the card. I found several doctors in town. I even found a few at one practice that came highly recommended. I contacted them via phone (which was very tricky to work up the nerve to do) and then they called me back the next day and said, “Sorry. We don’t take your insurance. You can come to us, but we’re out of network and it will cost the deductible and then your insurance will pay for half.”

All of that effort, and we had nothing.

The most frustrating part was that I wasn’t sure what I had done wrong in my search to end up at a doctor that my insurance didn’t work with. I USED THE WEBSITE! That doctor was on the list! ARG.

I decided maybe the need wasn’t that urgent, and went about my life.

But things weren’t better. We still had several bad anger/aggression episodes. Every time I kept thinking, “I need help.” But I didn’t want to go through all of the effort again just to find out we couldn’t afford it.

Until this morning when Wes had one of the worst episodes he’s ever had, triggered by one of the most benign incidents that have ever triggered him. It was bad. He was verbally abusive (which is an everyday thing most days) and he got physical with me. Several times. Over and over again.

So I decided to jump through the hoops again.

I started by calling the insurance company. It turns out my error last time was in choosing the network based on the letters on my card. Yes. That seems like the logical choice. But it’s not the RIGHT one. Our plan is actually a little different, so I had to choose a different type of network, one that wasn’t written on my card ANYWHERE. And when I chose that network? No doctors in my city popped up. So I started crying to the lady on the other end of the phone. Because my son had just smacked me in the face – on purpose – with his jacket and I couldn’t find him a doctor that was covered by my insurance, inside my city limits. Here I am, desperate to find him help to keep him from being an abusive adult, and I’m running into road block after road block. And I lost my shit on the phone with a stranger. I just sobbed. There’s crying, and there’s sobbing. I was sobbing. I was sobbing so hard I gave myself a headache.

Donnie was pretty sure there was ancillary benefits that we could look into, he found something in his benefits package that might help. But…it required a phone call to human resources and I was NOT in the mood to do that. I was having a hard enough time keeping my shit together with the lady at Blue Cross/Blue Shield. Don’t stick me on the phone with someone my husband actually works with.

So…I called someone listed in my network from an adjacent city. We’re still talking only a 45 minute drive, not too bad. And they had pediatric specialists. But I had to call again and go through a lot of stuff on the phone again. I had to explain what Wes was doing so they’d know what to evaluate him for. I had to say, out loud, “He is getting violent with me.” And this is just my KID. All I kept thinking about was – WHAT IF THIS WAS A CALL FOR MYSELF? All of these hoops…at least I could say they were for my kid. But if they were to find myself a doctor for my own mental health? I’m not sure I would have made it past the first attempt. Hours of failed attempts to finally find a doctor that MIGHT be covered by my insurance and then…

“What does the doctor need to evaluate you for?”
“Anxiety and Depression.”

No. I don’t see that happening. I would see me hanging up and never seeking the help I need.

Here’s the thing. If you’re bleeding? You go to the ER. If you can’t drive yourself? You call an ambulance. You don’t have to worry about anyone judging you because you couldn’t fix the gaping wound yourself. No. Saying, “I think I need stitches,” doesn’t make you feel shame. And no one makes you jump through hoops just to find a doctor 2 towns over.

I had a hard time and it took several weeks to finally make an appointment to get my son help. And who knows…the doctor might suck. Then what? Will I go through it all again? If it were for me? No. I would not. I’d suck it up and try to treat myself. But it’s for my kid, so I can be a little more detached.

My point? Be aware of these challenges. Be aware of the difficulty in finding affordable mental health providers. And we at least have some coverage on our insurance. Some people have none. And be aware that when/if you find a doctor that your insurance covers, it feels very shameful to ask for those appointments because our society does not acknowledge mental health as a priority.

If you have a parent, or a sibling, or a spouse who might could benefit from mental health care…maybe you can advocate for them? Ask them if they’ve ever considered it. If they have? Offer to help them find it. Tell them you have this friend who was trying to find a doctor for her son and she had a full-blown anxiety attack in the process. Tell them you promised this friend (me) that you would help any other friend or family who might need to schedule the same kind of appointment. If they’re family? Offer to call the insurance company to find a list of doctors. Offer to make an appointment. Offer to jump through the hoops for them if you really think they could benefit. Because after my own challenges? I have now decided that there are too many people out there who NEED help, but aren’t getting it because it is such a giant pain in the ass to just make an appointment to ask for help.

We’re lucky. We found a doctor that is covered and it’s a reasonable drive. Now, there weren’t many on the “reasonable” drive list. If this one or the others don’t work out, we may have to drive 2+ hours for help. Or we may have to just pay for it out of pocket. Here’s hoping we don’t have to cross that bridge and that this doctor in the neighboring town works out great.

Because I don’t want to have to cry to another complete stranger on the phone.

34 thoughts on “This Is What They Mean When They Say Our Mental Health Care System Sucks.”

  1. It’s so hard to navigate these ridiculous systems, but kudos to you for doing it, for trying again, for getting him the help. You may not feel strong right now, but you are. Go, you!

  2. A big hug to you, Mom. It won’t solve the issue or make it go away but a big hug to you.

  3. first of all, you are a great mom. You are A GREAT MOM.

    this sucks, there are things In life that just suck, and this is one of them. It is going to be okay, and you did great. And you are right, our mental health system sucks.

  4. All of the hugs to you. I’ve been there, down to crying on the phone with the insurance company and several office receptionists, and it just plain sucks. However, I didn’t feel shame–I felt desperate and powerless and absolutely scared shitless for my depressed, suicidal daughter. My husband has excellent insurance, we live in a suburb of a major metropolitan area, and I still had to call TWENTY FIVE providers before I found one that would treat her. I don’t know what or where she’d be right now if we lived in a more rural location. There’s no reason in this day and age for it to be so cotton-picking HARD for us to find mental health care for ourselves and those we care about.

    Sorry for the digression–I really came here to say that I’m proud of you for fighting through it all and making the appointment for your son. It *will* get better, I promise you.

  5. I’m not usually anon, and I’m an infrequent commenter. I needed some counselling recently and it was SO DIFFICULT! Just as you described. I handed the whole thing over to my DH (after finally just losing it with him enough that he realized I had TRIED and I COULDN’T DO IT), and it was similarly some ancillary benefit that there is no way of knowing about at all. But I got help and I’m doing much better. Many many hugs and blessings to you. You are doing the right thing. And I’m so sorry for all that you and Wes are going through.

  6. Thank you for updating us. We are so lucky to have military insurance and be able to access mental health care easily. Truly a blessing because we USE that UP! Wes mirrors my son jackson (sweet and snuggly and then mean and defiant a second later). Things are on the upswing for jackson currently but the pendulum always swings back eventually when his medicines lack potency.

  7. You are doing the right thing. You are fighting for your child and that is all that matters. I don’t have children, but I would jump through hoops and do whatever necessary to help my nephews if they needed it.

  8. Kim, when corey was young (we are talking almost 20 years ago now) we had issues like this. He had been diagnosed with multiple language processing issues and ad/hd. His pediatrician would not manage the ad/hd meds, so we had to seek a mental health professional. There were none in network, BUT we were able to obtain a waiver from our insurance to see an in town doc. It was a giant pain in the ass and we had to stay on top of it in order to get coverage. I am so sorry you are having to deal with this. Maybe a question to the insurance company about an out of network waiver might help?? You are a great mom and I know you won’t give up. Keep fighting and if you need a shoulder, just holler.

  9. Amen! You are proving what a great mom you are. I also sobbed on the phone when I tried to get an appointment with a derm specialist when A was a baby (hemangioma on her face) I didnt know how it was gonna grow and 6 months to get in felt like an excruciating amount of time. When you want to help your child you want help now. Wishing you will have an amazing doc!

  10. We experienced a similar pathway when trying to find treatment for our children too. I also had to hand over the reigns to my husband in dealings with insurance companies / medical billers as I find them incredibly frustrating and inhuman and they simply bring out the worst in me. I like to think its in exchange for personally handing: mensturation, pregnancy, labor and delivery, nursing, figuring out electronics, organizing our house, researching expensive purchases, sending thank you cards, paying the bills, and weekly grocery shopping (and without tears! Most of the time.) Sending you (and all of your family) hugs and mucho support. You are a fabulous mom and are an inspiration to many of us!

  11. I was scared too, in a weird way. I keep having these weird anxious nightmares about him growing up to be this abusive spouse and his wife yelling at me for not getting him help as a kid.

    This is probably an indicator that I belong in therapy too πŸ™‚

  12. I’ve been thinking about this a lot because my husband works in a cubicle environment and I wanted him to handle this SO BAD but A) He has no privacy and B) He hates…HATES…talking on the phone. So, I think if I ever need to find help for myself (which there are some days I think I probably should have done a long time ago) I’m probably screwed. I could probably call my brother. He seems like he’d actually be REALLY good at that kind of stuff πŸ™‚

  13. Someone mentioned a “waiver” to me on Twitter yesterday. If we have trouble finding someone even in Madison (which is the closest right now, and I think we have two pediatric potions out there) I may call you to figure out how you did that.

  14. Yeah – that’s my inherent problem. We both hate this kind of stuff. I have MUCH more patience so I can logically look at the two of us and know I’m better to handle it. BUT – he doesn’t cry randomly like I do. So, if there’s any sort of “tear” trigger – then I often try to get him to do it. The problem is that now he works in a cubicle environment and has NO privacy. So I asked but it’s hard for him to be motivated to find some privacy (especially at a new-ish job) especially since he’s never on the receiving end of the anger so he doesn’t know what it’s like.

    *sigh*

  15. I am so proud of you.
    You are a great mom.
    I’ve been on the mom-side of this, with my oldest. He would rage and hit and scream and spit and just act out like he was possessed. We never sought help other than through the school system, and even that was pretty basic. He is 18 now, he’s still full of rage and hostility, and he hasn’t learned how to control his temper one bit. He’s gone through 10-12 phones in the last 2 years (he gets mad and throws the first thing he can find, or whatever is in his hand at the time) and his iPad screen has been replaced twice in 6 months.
    What I’m trying to say is that I’m proud of you. I wish I had fought harder for my son, and if any of my other children ever display that type of rage and aggression, I will seek help immediately. You are changing Wes’s life for the better. Yes, this is going to suck, and it’s going to be hard as balls to get through, but once you’re on the other side and you have your sweet loving little boy back, you’ll be so thankful and grateful you’ve taken this step.

  16. For what it’s worth, it’s is MUCH easier to find a therapist that treats adult anxiety/depression. It’s not even funny how much easier it is–chances are you could call a provider today and have an appointment next week, and you wouldn’t have to drive 45 minutes, either.

    With that in mind, some completely unsolicited internet assvice–call for yourself. Today. Don’t be embarrassed or ashamed or feel like you’re admitting failure/defeat. I can promise you a good therapist has heard it all at least twice and can help you get to a more confident place. Ask yourself what is the worst thing that could happen if you call? You’ve already faced that with trying to find Wes a provider, right? You got this. Call someone today.

  17. Sending love and encouragement. I’m deeply saddened by the absurd and difficult experiences so many have trying to use our country’s health care system. Your perseverance will help you and your family, and your willingness to share your experiences makes us all stronger, more determined, and more connected.

  18. As someone who has needed to find help for myself and one of my son’s (not for the same thing or at the same time – THANK EVERYTHING) I commend you.

    I’ve been to two different therapists over the years and currently don’t have one. I haven’t really found the right person. And it is so hard! I just… I’ll be fine.

    For my son, it was easier for us. We got a recommendation from a local parent and it was a GREAT fit. Also, we knew him from outside of his therapy profession and were able to get in even though he wasn’t accepting new patients. And the best news is, my son with issues seems to be coming into his own and has not needed therapy for the last few years.

    You can do this!

  19. Just want to say thank you for sharing this, and good for you for persevering! If the out of town doc doesn’t end up helping, I wonder if your regular pediatrician could help with finding someone locally? Hang in there, and sending hugs.

  20. Oh, lady. I’m so sorry this is so hard. You are doing the right thing. YOU ARE DOING THE RIGHT THING. I’m so frustrated on your behalf about this. This post broke my heart, because it shouldn’t be this hard! But here is one of my favorite things about this post, and about so many of your posts: You rise above your own personal situation to point out things about the larger landscape: that we don’t talk about or value mental health the way we should, that insurance and society make it so hard, that we need to change it. Your point about going to the ER for a physical injury vs. having to get urgent mental health care was so well stated. This post is terrible and brilliant all at the same time. You aren’t just venting about your own situation; you use it to make larger points. It’s inspiring, honestly. I wish I could hold your hand or bring you a beer while you make all these calls or make phone calls for you. I wish you all the best in finding something for Wes. xoxo

  21. girl….been through this in spades…and then some more.

    it took almost two months for us to get her into a place to try and start getting the “real” help she needed…b/c of a combination of there not being EVEN CLOSE to enough true treatment options for her (not just the stop-gap measures we’d been going through for months) and the reality that even though i do have good insurance, it wasn’t going to work for what would work for her.

    after weeks on the phone, and more breakdowns on my part (both by myself AND with whoever was “lucky” enough to be on the other end of the call with me!) than is worth remembering, i got the “right lady” at my insurance company who offered up the the first ray of hope, which then turned into the answer we’d been looking for all along. in our scenario, it was a waiver that was available for us that allowed her treatment to be covered even though the insurance plan itself didn’t cover it at all. it still feels like a miracle!

    so, hang in there!!! you’re doing effing amazing!!! and it sucks, i know…i’ve honestly never been through anything worse. but once on the other side of it when you see your child living and thriving in a life that was possibly even going to be snuffed out just a few short years before? or a life that was unimaginable b/c it was pretty impossible to see any way out of it for them? you’d do it all again a zillion times over!

    damn kids. πŸ™‚

    i love you so and am always here for you in any way i can help!

  22. Oh man, sending you all the internet hugs – because, man that is challenging!

    My own kiddo has similar rage issues and one thing that has really helped is removing red food colouring and gluten from his diet. I can tell when he’s accidentally gotten into something because he turns into a demon.

    Kids, huh?

  23. I have been there with my oldest daughter (the rage that seemingly comes out of nowhere, the physical violence–it started when she was four). It is the worst, most awful feeling in the world, isn’t it?

    When I finally realized we couldn’t handle her on our own anymore, we were referred to a play therapist by our pediatrician, and luckily, it all worked out for us. The place was great, it was a 25 minute drive from our house, they took our insurance–and when our mental health coverage on our plan ran out, they worked with us on payments because they just wanted to help.

    And can I just say that it was the best thing we ever did for our daughter and for us as her parents and for our family as a whole? It made all the difference in every aspect of our lives. Every. Single. One. And things are so much better now. My daughter doesn’t see the play therapist anymore, though her issues are still there to a degree–she just has better techniques for emotional regulation and we have better techniques for dealing with the dysregulation when it does happen.

    I believe the same will be true for you guys. Hang in there!

  24. There is NOTHING more stressful than the illness (physical or emotional) of a child. If you were the poster-child for mental health, I’d say you’d benefit from counseling while you are helping Wes. Given that you know you have issues you want to work on, I’d say it is imperative.

    Print out that paragraph about how you want your readers to help someone else because they promised you that they would and give it to your brother. Have your brother make phone calls and make your own health an equal priority with Wes’s. Its kinda like that rule about putting on your own oxygen mask before helping others. If you aren’t your best self, how can you extend yourself to help Wes be his best self.

    Mom of two — all three of us have been in therapy for something or another at one point or another….

  25. I just thought I would share with you that I too have been in this place, and not knowing what to do with my son. I unfortunetly dealt with it and when he was 14 years old and 6 foot tall, (way bigger than me) the violent outrages were quiet frightening. We did seek couseling, but not until I made him move out of the house because I was fearful to live with him. He wanted to come back home (he was living with his dad)… and the agreement was he had to go through counciling before I would let him back home. He is a different kid now. The hormones may have settled down a bit, but this was a kid who HATED ME most of his life, Hit his sister, Stayed in trouble all the time for outbursts where he just couldn’t control his anger. He has always been both the sweetest and the meanest kid you ever did see. He was quiet older than Wesley when he went to seek help but, it helped him tremendously. He still has a poor relationship with my boyfried (of 12 years) but has learned to deal with it in an adult manner. He has learned to voice his discouragements and move past them by letting them out and giving them an outlet… and taking time outs. He walks out of the room often if he disagrees with something, just ups and leaves. But an hour or so later comes back and keeps a cool head about it and usually can discuss the issue at hand calmly at this time. I am so pleased with the man he is becoming and I love that he is learning how to deal with these emotions… better late than never. He is now 16 and even BIGGER… someone of his size can be very intimidating when they are angry. So knowing he is controlling those emotions makes me feel more at ease for him now and in the future. I wish you all the best with this and you are an awesome mom, ya’ll will figure it all out.

  26. Kim, I am so sad that it is still this difficult to get help for our kids. I felt the same way 3 years ago. We ended up going a different route with therapy, but it was excruciating and expensive. Ultimately, it did help us get through some tough and dark times. You have great kids, you are a brilliant parent, and your struggles will pay off. We really should grab that lunch sometime.

  27. The way we got help for our son was through the Employee Assistance Program (EAP) at my work. That’s the ancillary program that handles mental health issues/crises. I had to call a special phone number & then go through a mental health assessment with a counselor on the phone (for my son, but I was the proxy because he was 5 or 6 at the time). I cried too. It’s already hard & then finding help is SO HARD. Good for you for sticking with it, I hope you can get him the help he needs & the help you need.

  28. I just want to say I’m so glad you’re getting help for your son now. My son is 17 and just now getting the help he has needed since he was a toddler. I was online, researching “anger management for toddlers” when he was 2 years old. I should have gotten help for him then but I just thought he was a strong-willed child and then when he was older we had more children and life just got so very busy and I let it all go. Finally, he came to me, sobbing, a couple of years ago and asked for help for himself. I would do anything to be able to go back in time and help him when he was little. It has taken 2 years, 3 different doctors, and we’re now finally seeing a doctor who knows what to do for him. So, hopefully he will learn some coping skills and not get into serious trouble as an adult. Again, I’m just so glad you’re getting Wesley help now. I’ve seen what happens when it’s put off too long and it’s frustrating, worrisome, and heartbreaking. :-/ My heart goes out to you both. I know what a hard road this is for him, you, and your family.

  29. Oh that is just awful, I’m so sorry that you’re in such a difficult situation.
    I have mental health issues and when I was in the UK the help I got was pretty pants, in France it’s much better but comes with its own issues (language barrier).
    I really hope that the Dr can help you but am so sorry that it’s been so hard to find help.

  30. I’ll repeat – you *are* a great mom, which you have demonstrated once again by working so hard to get your kid the help he needs.

    We have almost every “ologist” you can imagine, and even with referrals it’s still a nightmare dealing with appointments, insurance, getting them to talk to each other (I swear it’s so much easier to just stay in one network like Vandy so they can all access your records, but when your child’s heart stops during a blackout after a tornado and they medflight her to Children’s in Bham, what else can you do?), etc. A friend of mine and I have an idea for a non-profit business that acts as “advocate” for children with health needs. We would get those appointments, fill out the Medicaid forms, know about all the programs, etc. etc. so the parents can just do the work of taking care of their kid. Maybe when I become independently wealthy…

    We have been very fortunate, though, that all of Kate’s doctors are really into the mental health issues that she, and *we* might experience. Sometimes her doctors spend more time helping us cope than they do with her issues.

    I realize none of this helps you, I’m just blabbing. But maybe just trying to encourage you that it is on the radar of most doctors (yes I’ve read your latest post re. why didn’t you ask the per – well duh, b/c you never talk the ped about anything but “medical” stuff – right? who would know that you do that?) and one you do get an appt and get going with it, you’ll hopefully find that the doctors are caring and sensitive. I so hope so. And am so glad you got a new ped.

  31. Anyone who is dealing with complicated and serious problems in a child likely ought to be in therapy (she says with the conviction of experience). If nothing else, just *someone* to say “You’re doing fine, you’re doing it right, keep going.” And this sort of situation is *super* stressful on a marriage so take good care of it. If you need a recommendation, I love Jim Norris at The Vine and they charge on a sliding scale. You may have to give up some races or some dinners out, but it will be worth it in the long run.

    Also, UCP (United Cerebral Palsy) has had a program where you can get free counseling with Marilynn Lands from the Mental Health Center. She was very helpful to me in understanding the grief that comes with having a child who doesn’t fit your idea, your plan, of the “perfect child” you were expecting to have. I don’t know the requirements of that, b/c Kate is a patient, but there’s actually a good bit of help out there for parents if you can hook into it.

  32. Lesley – the funny thing is my new ped is your ped πŸ™‚ I’m very much looking forward to a much more healthy relationship with my child’s doctor from here on out. And of course I’d give up all my races and dinners (we don’t eat out but once a week, but the races are quite costly) to help my kids, but we do have good insurance that covers it if you’re in the right network. Just staying in that network is a pain in the butt πŸ™‚ We’re hoping to be pleased with one of the two in Madison but if we’re not, we’ll go local and out of network. Luckily we’ve had TONS of good recommendations for counselors in Huntsville so if we’re forced to pay out of pocket I think we’ll have a lot of good once to choose from. Thanks for your recs!

  33. Thank you – as always – Michelle. You’ve given me so much support over the years and this helps so much. I have my own anger issues that reflect a lot of what my Dad had, so I think kinda knowing how ugly that can get in an adult helped me a little bit. I guess they say that’s why some issues skip a generation? Because my anger issues didn’t compound because I felt my Dad’s wrath and knew how awful it was, but Wesley hasn’t been on the extreme receiving end to know how painful it is. I’m glad you all are getting help now and holy CRAP, your son is so amazing to ask for help. There are so many issues I have as an adult that I wish I had told my Dad about as a teenager so I could have maybe gotten help and avoided some of the darkest years of my life. But I was a big wus πŸ™‚

    K.

Leave a Reply