Disability, Mental Health, Mistrust of Psychiatrists but Trust in Mom: A Story about my Son

Tonight I’m not writing about my mental health, but rather my son’s.

My older son has developmental disabilities and at times (like now) mental health problems. His diagnoses have included Asperger’s syndrome (no longer in the DSM), pervasive developmental disorder not otherwise specified, attention deficit disorder, anxiety, and depression. I think he has a learning disability as well or some other kind of issue with cognitive processing that’s never been properly diagnosed. I don’t think he really learned anything in school after about sixth grade; essentially he received his high school diploma for politeness and perfect attendance. So there are layers of challenges, and in some ways we have never figured out which one is primary, if in fact any of them are.

When Andres as in middle school, he was bullied some. He also found the change from being with one teacher all day to six different classes a day overwhelming. He would (barely) hold it together during school each day, and then he’d come home and have meltdowns. Those meltdowns looked like the temper tantrums of a two-year-old, but enacted by a larger, stronger twelve-year-old. A few times he even had them in public, on the sidewalk downtown; that was a joy (eyes rolling).

Working with a doctor, we got him on a stimulant medication that made it easier for him to cope with school demands, and he felt less overwhelmed. He had a whole vitamin regimen to make sure he could digest the nutrition he needed from food (there’s an increasing amount of research on the link between the functioning of the gut and autism, and he’s always had some digestive problems too). The temper tantrums declined from 5-10 per day to 1-2 per month. And he was happier.

High school was better socially, though as I said, he never seemed to learn much, or if he did, it disappeared almost immediately. I could tell a lot of stories about hiring consultants and meeting with teachers and IEPs and how none of this effort ever changed anything. But instead, let’s fast forward to…

Summer 2o11. Andres has fallen in love with a woman he met online. She lives five hours south of us, and he wants to meet her. Since my husband and I met online, we can’t be negative about this way of meeting, and we decide to accommodate him. We take him down and meet her and her family and are shocked by their poverty and the difficulty of their life (skipping the details for the time being).

Forward again a few months, and Andres has essentially moved in with girlfriend and family. He goes off medications almost immediately. He stops showering on a regular basis, stops brushing his teeth, lives on white bread and cheese and Skittles, maybe a box of Kraft macaroni and cheese thrown in now and then. We learn that the family is in constant crisis and always short of money. It takes me quite a long time to learn that I don’t always have to say yes when asked for money.

By 2014, when I got Andres home for a visit and dragged him to a dentist, the dentist said he should probably just have all his teeth pulled and get dentures. He was 24 at the time (my son, not the dentist!). He swore he would take better care of his teeth, so the dentist said maybe some of the teeth could be saved, maybe. In the two years since then, Andres has not taken care of his teeth nor gone to the dentist again.

Girlfriend’s father died this summer, after a long illness, right there in the living room. It wasn’t unexpected, but it was a big blow to Andres at the time. He started realizing that everyone was mortal, and it freaked him out. Also, girlfriend’s mother has given up and doesn’t cope at all. That leaves girlfriend responsible for the the family (herself, her mom, two disabled teenage brothers, and Andres). It’s exhausting, but I can see how much she has matured over the past seven months.

Understandably, she’s asked Andres to grow up and be more responsible as well. But he can’t cope. He resists, pouts, cries, yells. He doesn’t help with chores, doesn’t help with the disabled boys, doesn’t help manage the money but instead whines if girlfriend doesn’t buy PopTarts or other junk food. Over the past several months, he’s had screaming fights with girlfriend’s mom. Sometimes girlfriend calls me, crying, because she needs my help calming Andres down. He threatens to “run away” (???) and she becomes frightened he’ll run out onto the highway and get hit by a car. Out of fear and concern, she gives into him when he threatens this, but she’s become resentful. I won’t be surprised if there is a day she asks him to leave.

That’s the backstory. Maybe I should add that as a child, he was affectionate and generous and deeply attached to me, to the point where doctors got confused because many children with autism don’t show as much affect as he did.

Anyway, two nights ago, girlfriend’s mom asks Andres, again, to help clean up the kitchen. “Later, I’m busy,” he replies, not looking up from the game on his phone.

An hour later, irritated, she asks again, and he swears at her. She stomps into the bedroom and grabs his phone away from him. He reaches to get it back from her. They tussle. He’s not that big, but he’s taller and stronger than she is. He “slams her into the wall” (girlfriend’s description) and “dislocates her shoulder.”

(What?!? Oh my gosh, is she at the doctor? No, she got it back in herself, girlfriend says to me. So I’m not sure if the shoulder was truly dislocated. I do believe he hurt the mom, however.)

The story goes on. Andres was threatening to run away again, and started to run out of the house barefoot, and in a t-shirt. There is snow on the ground outside, and the temperature is in the 20s. Girlfriend and mom persuade him to come back in, but he quickly loses his temper again. Mom puts a chair against the front door to block him from leaving. He picks up the chair and throws it across the room, breaking knickknacks and scaring everyone.

Apparently this goes on for multiple hours, with quite a bit of destruction and screaming and crying. I don’t actually hear the story until 24 hours later, when girlfriend insists they call me and talk about what is happening.

I listen to the story with a sinking heart. He’s unraveling, I think. No, he’s already unraveled. So I go into crisis management mode, very calm on the outside. I talk to them for nearly two hours, repeatedly giving the following messages:

  1. It’s not okay to be violent with anyone, even someone who takes your phone.
  2. It’s not fair for people to have to be afraid of someone they live with.
  3. I can tell he’s very distressed, to be behaving in a way that doesn’t correspond to what we both believe about how to treat people.
  4. I still love him.

It takes a long time for him to hear these messages and calm down. Over the holidays, we had talked a bit about the possibility of going back on medications. We revisit that topic, and he says he is willing to try that. He wants me to help him find a doctor he can go to. Luckily, two months ago I helped him get reinstated on Medicaid, after he’d failed to return paperwork and had lost his health insurance.

So, today my primary tasks involve finding resources to keep him safe. I imagine that if he explodes again, he could “run away,” or he could be thrown out of the house, and I’m worried about him on the street. He has little street sense and could be in great danger–never mind that it’s also incredibly cold out. I get the address for two shelters and a Motel 6, just in case.

I search through social services. I pull up his new insurance card from Medicaid. They have recently contracted our their behavioral health services, and it’s hard to tell how to access them. Then I stumbled on a mental health crisis line. I’m skeptical of these things, after I had a very unhelpful experience with one after I’d been assaulted, but I can try.

I explained the situation to the woman who answered, and she told me, “You’ve called just the right place.” Welcome words.

Now I know who girlfriend, her mom, or I can call in an emergency, 24/7. I know what to say if we need to call the police to keep everyone safe. I found out how to get him a psychiatrist as soon as possible. There is also an agency now that will advocate for him if he ends up in the hospital or in jail, and since I gave them the basics about his prior meds and diagnoses, they can probably get him help faster.

Then I call and manage to get him an appointment with a psychiatrist 11 days from now. He’s not able to drive, so I even find him transportation that Medicaid will pay for him.

Next I spend a couple of hours on the phone with him, sharing this information. He distrusts psychiatrists, so we talk about that. He is aggravated and embarrassed that I talked about him to the Crisis Line, so we talk about that. It comes down to his sense that taking medications and “having issues” makes him inferior to other people. He doesn’t like that psychiatrists write negative things about him in reports. A social worker let him see his file one time, and it left him feeling devastated. He fears everyone thinks he is incompetent and worthless.

I knew it would come to this eventually. I tell him, for the first time, that I take anti-depressants and have done so for a long time. I know he respects me and doesn’t think I am “inferior,” so I’m hoping this will help him feel less stigmatized. It’s not so unusual to “have issues,” I tell him, and it’s healthy to get help for them.

It’s not as though BOOM, lightening from the sky, revelation, and everything is fine. But I can hear that it makes an impression on him. He says he will try working with the psychiatrist and thanks me for helping him. “I would never know who to call or what to say,” he tells me.

“I’ll teach you,” I say, “just in case you need to do it without me sometime, for some reason.”

I love him, this vulnerable, tormented and potentially dangerous boy in a young man’s body. I’m so thankful he trusts me, that he’ll talk to me about things, and that he’s willing to try something that might help.

1992-7-aaron-shirzadegan-age-2

11 thoughts on “Disability, Mental Health, Mistrust of Psychiatrists but Trust in Mom: A Story about my Son

  1. I want to say that I see such care and love in you for your son. And I also am really impressed that you set up resources for him to use himself. That you are there to help but are teaching him too. Q, I’m simply so impressed. And my heart goes to you, because it can’t be easy to strike the balance that you’ve found here.

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  2. I am really struck by your intense love for your precious son. I also imagine how extremely tiring all this must be for you. Did I say tiring? Ummm more like complete exhaustion, worry/fear about his future. I was there once. My oldest hears voices and hallucinates and struggles with paranoia. The psychiatrists refused to diagnose him before he was 18 which meant no meds. Now that he is 20 and moved out he refuses to go to the psychiatrist and refuses all meds. We worry about homelessness and worse. I hear and see your pain.

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    • I worry about homelessness, too, especially because he’s so easily manipulated and tricked. Another worry is jail, even overnight. I can envision him becoming hysterical or frustrating others to the point someone would hurt him to make him be quiet.

      I get it that worrying can’t prevent bad things from happening, but it makes me feel a little better to try to set some protections in place. I am still trying to think about whether there might be additional things I should do.

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  3. Look at that beautiful little boy. He’s gorgeous, Q.

    So many things here to feel torn about. Of course you want him to have intimate relationships and a loving partner in his life, and maybe at some point were afraid he wouldn’t find that, but living with his girlfriend has obviously had consequences for his health. You look at him and see your precious, affectionate little boy, and perhaps also echoes of his violent, frightening father. There must be days where you want to shake him for not eating properly, not doing the things that you KNOW will help him feel better, but at the same time you just love him.

    But he has agreed to see a psychiatrist! That’s a huge achievement. It may be followed by wavering and excuses, but he’s taken that step, and re-affirmed just how connected he is to you. That matters regardless of what happens next.

    It sounds like this has jolted you into action, and you have energetically thrown aside the cloak of lethargy and depression that has been pressing on you for a while. That can be a good thing, but I do hope you are remembering to care for your precious self as well in what is a pretty highly charged emotional situation.

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  4. What a cutie.

    I hear you about the worry and fear of having a disabled son. As you know, my adult son also struggles and cannot function, and in his case he doesn’t have a diagnosis, and it’s so hard to know what to do that will help. I do admire how hard you fight for you son – what a complex and difficult situation. It seems like a huge positive that he does trust you as much as he does.

    My own son trusts much less. And refuses all help basically. He does go to his family doctor sometimes but he has no diagnosis and nothing to help. In his case though, he is on top of things mentally. I worry of course whether he will ever improve and whether he might end up homeless.

    It’s just very stressful. You are doing a lot and caring a lot, and that’s good enough.

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  5. You are a great mother. I can only imagine how hard it most be. I pray that he goes back on his med and finds balance in his life. I wish you strength and love and health to continue this journey. ❤

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  6. He found a way, despite what’s in his head, he found a way to hear you. His ability to trust despite his experiences is heroic. He is a worthwhile young man with a fight many of us can’t comprehend. I applaud his efforts to try to figure out a way of life that works for him and those who love him.

    You’ve got to be totally wiped out.
    I’ll tell you what. As a small gesture of respect and support, I will tip my next cup of hot chocolate to you.

    Smiles to you and yours,
    Faith

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