ADHD

Book Review of Untangled: Guiding Teenage Girls Through the Seven Transitions into Adulthood

By / May 5, 2017 / 3 Comments

I read a lot of articles online, but when I read an excerpt from Lisa Damour’s Untangled, I knew I wanted to read the rest of the book. I approached it cautiously. I’ve picked up so many parenting / therapy / self-help books and been disappointed in them. Sometimes these books irritate me by assuming things about me or my child that do not apply. Other times they accurately describe my problem, but then try to prescribe fixes for me that simply would not work in my house. Most often they simply have little new information to offer. I end up skimming through pages and pages to find a single idea that I can apply in my life. So I checked Damour’s book out of the library expecting to skim and glean some useful information. By the end of chapter two, I’d ordered a copy for myself because I want to be able to re-read it and write notes in the margins.

Right in the introduction Damour stated that she did not seek to be prescriptive, she just wanted to describe the natural emotional / intellectual development of teenage girls and let readers come to their own conclusions or solutions. (The same development happens in boys, but it manifests a bit differently and Damour chose to focus on teen girls.) She does offer suggestions here and there, but they’re almost always a list of “some have found this works” or “you might want to try this.” I can tell you the exact paragraph where I fell in love with Damour as a writer / psychologist / mother. She was describing a study that has been done about the correlation between teens doing well socially and academically and them eating dinner with their parents more than three times per week. I already knew about that study. I’ve read it. I’ve felt guilty about it and resolved to do better at making family dinner happen. Then I’ve watched the efforts fade away so I felt guilty again. After describing the study, Damour says this in a parenthetical:

Here are some questions I’m hoping further research will address. Must the meal be hot? Must it last more than ten minutes to achieve its magical benefits? And how often can I freak out about table manners and still have a positive influence on my daughters? Obviously, important work waits to be done.

At that moment I knew that Damour gets it. She understands that every thing we do for our kids, for our work, for or ourselves comes at the expense of some other good thing we could be doing. Time, energy, and willpower are limited resources and we all have to make choices about how to spend them. After that parenthetical I was very willing to read more of what she had to say. She didn’t disappoint.

The other reason I was afraid to read the book was because of where I was emotionally. I was in the middle of a grief I wasn’t sure I’d ever be able to get rid of. I was actively grieving the normal teenagerhoods that it seemed my kids would never be able to have because of their combinations of mental health and developmental issues. I was very afraid that this book would just make me cry because it would describe a teenage experience that was out of reach for my family. It did the opposite. This book shifted the way I think about my teens (the boys as well as the girl) and healed much of the grief I had been feeling.

Damour’s book describes specific developmental drives that happen in teenage brains. She talks about how those drives can manifest differently in different teens and different parent child relationships. Then at the end of each chapter she outlines some things to watch for which might indicate that your child has a problem which isn’t covered by “normal teenage development.” Reading Damour’s descriptions, I was finally able to see how much of my teen’s behaviors are actually normal rather than driven by their issues. It can be really hard to tell with teens because normal teenage behavior would be disordered behavior if done by an adult. Damour’s descriptions have finally provided me with the tool to sift through the things my teens do and say. Knowing which behaviors are normal means I am better able to sit back and let them learn through struggling instead of jumping to their rescue. I’m also able to look at which developmental drives are being interrupted or hampered by the mental health issues. I can see ways to help that I hadn’t seen before. All of this is subtle, but very significant.

I think Damour’s Untangled is going to be like Gift of Fear by Gavin DeBecker, a book that I recommend over and over again to people who are struggling. It certainly feels like a personal paradigm shift, like when I first read the article about The Power and Peril of Praising Your Kids. That article changed how I parented forever. I’m still absorbing information from Damour’s book and letting it settle into my brain. Yet, I’ve already been less stressed and anxious. I’ve changed small decisions every single day based on what I’ve learned. Instead of jumping in with concern (thus communicating that the experience is not normal and is an emergency) I’ve been able to stay back and express confidence that my kid can handle it. And they have. And everyone was happier and more confident for it.

So if you have a teenager, are going to have a teenager, or know teenagers you want to understand better, I recommend Lisa Damour’s Untangled.

Notes from a Class on Building Good Digital Habits

By / December 9, 2016 / 1 Comment

The class was billed as being about digital addictions, but it turned out to be far more generally useful and less alarmist than the description made me fear. It was taught by Dr. Ryan Anderson, who wrote a book on the topic Navigating the Cyberscape: Evaluating and Improving our Relationship with Smartphones, Social Media, Video Games, and the Internet. It was the second such class, though I’d missed the first session which delved into the neuroscience of how digital media can create the same biological and neurological responses as chemical addictions. The second session focused on recommendations for what to do about the potential for addiction, or how to manage an addiction which exists. It was a topic that fascinated me, because there are folks in the Tayler household who are a bit too attached to their screens. Yet I approached the class with quite a bit of anxiety, very afraid that the teacher would propose solutions that would require me to upend our family’s coping strategies. That was not what he said.

The first thing the lecturer told us was that video games, social media, television shows, etc are not inherently evil. They have great potential to make our lives better, and probably already have. Second he clarified that while a digital detox can be useful to expose which of the digital media in our lives are problematic, detox isn’t an effective means to break an addiction. The core problem with digital addictions is not the existence of digital things in our lives, but that we’ve allowed our lives to get out of balance so that the digital things take up too much space. The fix is to find ways to balance your life, to make sure that you’re being mindful about the choices you make and intentionally choosing digital things only when they enhance your life instead of from habit or dependence.

One of the things he went over at length was how much time we should be spending on screens for optimal enjoyment. The golden zone appears to be 1-3 recreational hours per day. (Note that time on screens for work or school doesn’t count in those hours. It engages the brain differently.) People in my house routinely spend five hours per day (often more) on screens. But the teacher didn’t recommend the sudden imposition of a time limit, because time limits provoke battles. Instead he gave a long list of things which help us to bring balance into our lives, and to combat the patterns of shallow thinking which are the natural result of prolonged social media and sound bite exposure. I’ll list some of these suggestions below.

I wrote notes throughout the class. I do think that the lecturer had a strong bias to view digital media and games as more dangerous/addictive than they are to most people. This bias is the natural result of the lecturer working with and studying autistic populations who are particularly vulnerable to video game addictions. Yet I saw great value in his list of suggestions. When class was over and I transcribed the notes, I picked two things to apply in my life. This too was part of the class, he warned against attempting a major overhaul of our lives. Pick one or two small changes and let them settle before picking one or two more.

The two changes I decided to start with for myself were implementing a one-screen-at-a-time rule. If I am watching a show, I don’t need to be playing a game on my phone at the same time. If the show isn’t sufficient to hold my interest by itself, then I should do something else. I also want to consciously practice giving my full attention to a single thing rather than partial attention to multiple things. The second change is to spend the hour before bed away from screens. I don’t need to be checking on the status of internet things right before bed. Those things will be there in the morning. Looking at them in the morning is less anxiety inducing because I have the time and energy to take action, whereas at bedtime I just end up stewing on things. Then there is the science which says the light from screens can disrupt sleep patterns. The one caveat I’m allowing for me is if I’m watching a show or movie with someone else on the big family TV. That may happen before bed some days.

Interestingly, though I’m only imposing two rules on myself, I’ve discovered that some of the other suggestions have been implemented as well. Just knowing what they are helps me make more conscious choices in my relationship to technology. I haven’t imposed any rules on the other members of my household, but I’ve talked to them about the lecture and about the shifts I’m making for myself. I’ve already seen some of them begin making more conscious choices as well.

I think I may buy Dr. Anderson’s book and read it in detail. The suggestions I took notes on are covered in there. And I’m certain I missed writing notes on some good suggestions.

List of suggestions for improving life balance:

The so-so solution that someone will actually do is better than the ideal solution that someone won’t try. Take any step that inches you closer to a healthy balanced life. You can take further steps later.

Read a physical book. The tactile experience associated with paper focuses the brain differently. Some of us need to re-train our brains to engage with the slow unfolding of story and language.

Learn to wait without needing a distraction, watch your surroundings and pay attention to your thoughts about them. Learn to sit with boredom and see what thoughts come to you.

Make something with your hands (can be a puzzle or playing with magic sand)

Sketch, paint, or color

Pay attention to others needs and do something to help without being asked

Make a practice of thanking others, either out loud or in writing.

Cook from scratch

Meditate

Make amends

Have tech free time every single day

Only use one screen at a time

Go for a walk, or get outside, or watch a sunset. Do something slow which brings you into contact with outdoors or nature.

Do something to make your living space cleaner

Don’t begin a session of video games or social media until you have a plan for when it will end and what you will do afterward.

Plan a head and do full days with no tech.

Have an hour before bed with no screens

Before you google, think, question, hypothesize, experiment, explore, discuss

Limit tech locations, make sure you have tech free spaces in your life.

Have at least one tech free day per month.

Packing Along Ways to Cope

By / September 10, 2016 / 2 Comments

In the near future I am taking my family on a cruise. It is a big trip that I’ve spent quite a lot of time planning and saving for. It is the sort of trip where people are supposed to leave behind all the trappings of regular life and go have adventures. We’re not going to do that. Adventures, yes. Leave everything behind, no. There isn’t a member of my family who doesn’t have some sort of mental health issue. Some of the management techniques for these issues involved coping strategies and controlling our environments. If you remove us from our regular environments and coping mechanisms, we melt down in fairly spectacular fashion. Howard and I discovered this last year when we went on a cruise. It turns out that both he and I function much better as human beings when we have an internet connection. When we wander through our usual internet rounds, we show our brain that everything is okay, predictable, normal. If internet makes the cruise enjoyable, then buying the internet package seems like a no brainer.

For the past week I’ve been watching my kids and evaluating which coping things we need to bring with us. I’m bringing DVDs of familiar shows, because several of us use shows as a form of emotional regulation. We’ll be bringing hand held video games for the same reason. I’m contemplating packing along one of our weighted blankets despite what that will do to the weight of our luggage. We’ve got travel speakers so that people can have their night time music. All of us will bring phones with an international texting plan so that we can find each other in anxious moments. Even with all of that, I expect there to be moments where one or another of us gets melty and just wants to be back at home. It is possible that someone will flip out and I’ll have to spend a portion of my trip actively helping that person make it through. But I don’t think so. I think that of the big family trips we could take, this cruise is going to fit into a relatively comfortable place for most of us. The travel days with multiple plane flights will be the hardest part.

I sometimes wonder what it would be like to not have to do this level of planning for emotional management. I also wonder if we actually need this level of planning, or if it is all just a manifestation of my anxiety. Whatever it is, the planning is mostly done, which is good.

All the things in my head

By / July 18, 2016 / 2 Comments

Colloquially it is called “Getting up on the wrong side of the bed.” The fact that there is a colloquialism about it, shows that the experience of waking up in an unpleasant emotional state is a common and normal experience. Yet it feels to me that there is a fundamental difference between waking up a little grouchy or sad, and waking up feeling as sad as if someone you love just died. It is the difference between tripping because you misjudged the last step and falling into a pit. Yet the wrong side of the bed terminology might serve as a bridge to help those who haven’t had this experience understand those who have.

It wasn’t a pit this morning, but after two nights of insomnia, I woke into a day that just feels a little sad. I looked at my list of things to do and it felt like I’d already failed at most of it, which isn’t a great feeling to have at 8am on a Monday morning. I’m used to feeling a little overwhelmed at the tasks of the week. I’m often afraid that I will fail if I don’t get moving. But this morning I had the sense that I had already failed before I’d even attempted to do anything. Logically I knew it wasn’t true. This week has great potential for success. I just needed to get moving and do the things. Yet pushing against that feeling of failure is like walking in waist deep water with a current trying to send me in a direction I don’t want to go. It is a gentle current, one I can counter, but pushing against it is tiring. Push I did, and by afternoon things felt better.

It is possible that the morning emotion was in part due to thoughts I had yesterday. I was thinking about how I’ve written very little about the kids on my blog lately. This is not because they haven’t provided material, it is just that with teenagers it is more complicated to navigate which parts of the stories are mine to tell. Since January Gleek has become more clearly OCD. I’m not sure if that is because we’re now seeing the behaviors for what they’ve always been, or if the “volume” has been turned up on those behaviors. It is hard for me to judge because it all feels like daily life to me. Yet when I use objective measures, such as participation in girl’s camp, I have to acknowledge something is different. Last year she was able to stay all week. This year she had to come home early because being there was too hard on her and on her leaders. There are specific incidents that both Gleek and I find fascinating (Why does her brain do that?) but writing them up feels vulnerable and my first loyalty must be to my daughter not to any audience.

None of the other mental health issues have vanished either. While Patch hasn’t had a full on panic attack since school started, he hasn’t exactly been going out into the world doing adventurous things. He’s demonstrated some more self awareness than he had before, but he still locks up in a way that is like the panic attacks, but with less adrenaline. Link, Howard, and I are still working to figure out what adulthood will look like for him. Being connected to resources for autistic adults has really helped, but much of what I’m hearing is “give him extra time to develop and room to learn from the mistakes he makes.” Patience is a thing I’m tired of having to carry around all the time. Kiki’s struggles are improved and not mine to tell.

I still wrestle with my own thoughts, wondering if I am culpable in the quantities of mental health issues of my children and deciding, yet again, that genetics have a stronger influence than nurture in this case. (Family history from both sides which include: Autism, anxiety disorders, depression, bi-polar disorder, ADHD, and a host of other things.) I think about work, money, packages, and projects. I look ahead to the advent of school and to Gen Con and to the cruise at the end of September. I plan for these things. My thoughts keep circling over the same ground and it all feels like repeats. I don’t really want to blog repeats. That gets boring for me as much as anyone else. I need to do some things to break me out of my cycle of thoughts. I need to take the kids out of the house and get out myself. There are plans to do that on Wednesday. And GenCon will take me far outside my usual stomping grounds. Hopefully getting outside the box will help me shake loose some new thoughts that are interesting to write.

Home from Camp

By / June 29, 2016 / 2 Comments

Just came back from picking up my 15 year old from a church girls camp. 3 days early. It turns out that the stresses of camp pushed her mental health issues into a state that the camp staff were not equipped to manage. So she comes home because it is the best of the options available. Some days are hard and not what anyone wants.

Disorders in Hiding

By / January 26, 2016 / 6 Comments

Sometimes autism doesn’t flap arms or drone on forever on the infinitesimal details of one particular topic. Sometimes Autism can look like a friendly kid who calls his friends over and is the instigator of group play. Autism can be wearing the exact same outfit every single day because your clothes are part of who you are and you don’t feel like yourself in different clothes. Often this means duplicates of clothes. Autism can be standing in a group full of people who are all talking and laughing, wanting to be part of it, but they only talk about things you don’t care about. Autism can be refusing to go into the lunch room because it is too loud and ending up sitting in a hallway off by yourself feeling lonely. Autism can be feeling certain that you made an agreement with another person only to discover that they understood what you said completely differently from how you meant it. Autism can be being unable to do an assignment because you can’t wrap your head around how to begin. Then everyone gets angry with you because it looks simple to them. Autism can look like stubbornness and laziness.

OCD does not always flip light switches, count posts, or line things up in rows. Sometimes OCD is becoming actively uncomfortable and antsy if someone else is sitting in the spot where you expected to sit. This discomfort may cause you to lash out in anger. Then you have to face the consequences of your angry outburst. OCD can be carrying all of your books and school papers in your arms because that is the only way you can constantly be sure you have everything. OCD can be not throwing away any school papers and carrying them all in the ever-growing stack because it would be terrible to not be prepared should the teacher ask students to pull out an old assignment from three months ago. OCD can be wrapping every thought with a cloud of tangential and descriptive information which obscures the thing you want to tell other people. Only you can’t skip any of the information because it is all connected. And if anyone tries to interrupt the thing you’re saying, you get angry, because you weren’t finished, and the thing you were saying is important and must be completed. OCD can be correcting the pronunciations of the people around you because if a word is said wrong, your brain can not let go of that word until it is spoken correctly. One of these things is a quirk. All of these things together is a disorder that affects pretty much every hour of every day and every relationship in your life. OCD can look like disobedient defiance, rudeness, and disrespect.

Anxiety does not always worry about things. Sometimes anxiety is a heart that races and palpitates even though there is nothing going on and the person feels calm. Anxiety can be feeling antsy and agitated, like post-adrenaline shakes, even though nothing happened. Anxiety can be imagining a dozen possible futures and making plans to be prepared for all of them. Anxiety can be hyper-organization that other people praise, and which is actually useful, except that it never allows rest, vacation, or breaks. Preparation that never switches off. Anxiety can be needing to leave an event because there are too many people moving around and talking, making you unable to track everything. And you have to track everything, because if something goes wrong, you must be ready for it. Anxiety can be skipping work opportunities because they require face-to-face interaction. Anxiety can be checking up on other people’s work until they get annoyed with you, but you can’t not check because you have to be prepared if they didn’t do their job. Anxiety can look like a nagging and controlling personality.

ADHD is not always easily distracted. ADHD can be so focused on a project that suddenly you realize that people are standing over you angry because they’ve been trying to get your attention. ADHD can be the sound of pencils scratching on paper overpowering the thoughts in your head. ADHD can be deciding that today you will REALLY pay attention and make sure you get all your assignments, only to realize that you missed hearing an assignment because you were busy planning how not to miss assignments. ADHD is being lost in the thoughts in your head. ADHD can mean always feeling lost or out of step because everyone else knows what is going on, but you haven’t any idea what the instructions were. ADHD can be a jittery leg, all your pencils chewed to bits, and fingers that twist and play with whatever they touch, all without you intending to do any of it. ADHD can be lost items and missed appointments because at the important moment your thoughts were on something else. ADHD can look like chronic disorganization, negligence, and a person who doesn’t care enough to get things done.

Depression does not always stay at home lying in bed feeling in a pit of despair. It is not always dramatic or suicidal. Depression can be doing all the tasks that are required of you, but enjoying none of them. Depression can be feeling like things will never be better than they are now. Depression can be binge watching television shows on Netflix, because then you don’t have to listen to your own thoughts. Depression can be playing endless games of solitaire to fill the spaces between required activities. Depression can be deciding to stay home rather than go out with friends because being social sounds too exhausting. Depression can be having friends drift away because you’re not the person you used to be and you don’t have emotional energy to maintain the friendships. Depression can be crying at seemingly random times over things which wouldn’t normally cause tears, like a happy song playing, or the store being out of the cereal you like. Depression can be a messy house because you only have so much energy to do things and laundry didn’t make the list this week. Depression can be not bothering to brush your hair or change clothes because it is too much work. Depression can look like a person who is standoffish, slovenly, and unfriendly.

So if you have to deal with a person and they are awkward, rude, nagging, standoffish,or negligent, pause a moment before you condemn them. It may be that they do have the character flaw you perceive in them. Or it may be that the person is fighting a daily battle you can’t see, and they need your compassion instead of your anger.

Finding the Right Therapist, or How to Recognize You Have the Wrong One

By / August 31, 2015 / 7 Comments

“It takes a few tries to find the right therapist. Don’t give up.”

I was told variations of this multiple times by multiple people. They were people who had struggled in similar ways, so I believed them. Except that it was repeated often, in almost the same words. Following this seemingly simple instruction turned out to be very difficult that I began to wonder. Is this just a platitude? A thing we say to offer hope in a hopeless situation? Ultimately I’ve come to the conclusion that it is not just a platitude. It is a fact and a necessary process. By the end of this post it will be clear why.

I had no good methodology for finding the “right” therapist. Sometimes I went on recommendations from friends, neighbors, or primary care doctors. Though most of those recommendations were “I’ve heard of this therapist and have a vaguely positive impression attached to the name.” The few times I got an extremely specific recommendation from someone who had worked extensively with that therapist, the therapist was invariably closed to new patients.

I was left with trial and error, which is not a great process for someone who is struggling with feeling hopeless. Unfortunately this mirrors the medication treatment process for mental health as well. So we spent a couple of years trying this therapist and that medicine before switching things around. One kid got better, but not in any way I could relate to the therapy sessions she’d had. Two other kids got much worse. Until lately they’ve been better at least partially because of our experiences with therapy.

I’ve now had direct experience with seven different therapy relationships across four family members. At this point I can tell you far more about how to tell when you have the wrong therapist than I can about finding the right one. It finally occurred to me that this is actually useful information. No one told me what should constitute “not working” and so I stayed in several of the therapy situations much longer than I should have. It is hard to make good judgement calls in the midst of emotional chaos. It is even harder to abandon groundwork that you’ve spent effort, time, and money to establish in order to start over with yet another complete unknown. The thought of having to start over kept me doing “one more session” for weeks. So I’m going to tell you the knowledge I gathered from my experiences. Then I’m going to tell you the stories of how the therapists we had were wrong. From the combination you may be able to glean information to inform your decisions.

Knowledge

My experiences are not universal, some of what I say here may not apply in your situation or may be wrong for you. Listen to your own instincts, which can be hard in the midst of emotional chaos, I know. Listen anyway. Only take the pieces of advice that help you. Discard the rest.

It should only take 4-6 sessions for you to build a rapport with a therapist and start doing emotional work that is beneficial. If you don’t feel these things, move on.

It is not rude to abandon a therapy relationship. You don’t have to apologize or even explain. You can say “this isn’t working” or you can simply cancel your appointment and go elsewhere. Therapy professionals will not be offended or hurt. They understand that some relationships just don’t click.

Your therapist should never make you feel judged. If you feel judged you are not safe to find out what you really think and feel.

If you’re helping someone else with their therapy, how they feel about the therapist matters more than how you feel about the therapist.

It is normal to sometimes resent your therapist, but if that is happening week after week, it is time for a different one. Resentment is a sign that you feel attacked, which means you don’t feel safe with the therapist.

It is easier to have a regularly scheduled appointment than to have as-needed appointments. If you need a non-regular schedule, don’t leave the therapist’s office without scheduling your next appointment.

A sign of a good therapist is that they’re willing to change tactics when one is not working.

One of the reasons it may take several tries to find the right therapist is because you don’t know what you need until you start dealing with one. It is an iterative process.

There are different methodologies in therapy, what helps one person will be ineffective with another. Sometimes the therapist is a mis-match because they’re most comfortable with a methodology that doesn’t work for you. (IE: cognitive behavioral therapy when what you need is PTSD focused therapy or dialectical behavioral therapy.)

The financial cost matters. Sometimes a therapist can be wrong for financial reasons, because high cost can give your brain yet another argument not to go. This stinks, but it is true. Many universities have low-cost clinics where their grad students get to practice being therapists.

The therapist should be respectful of the anxiety and emotional energy that goes into admitting help is needed. One who doesn’t answer phone calls or drops you as a client is the wrong therapist, no matter how good they might be when you actually have an appointment.

Stories

Therapist #1: For Gleek. The therapist was young, a grad student. I thought this would help her build a relationship with Gleek. But all the sessions ended up with me and Gleek together sitting on the couch. The therapist spent most of her time dissecting the parent/child relationship rather than digging in to find out the inner workings of Gleek’s thoughts which Gleek hid behind a shield of chatter. I came away from most of those sessions feeling resentful and judged. It is likely I was projecting my own self-judgements onto the therapist, but she wasn’t sensing or solving that. The therapy relationship ended because the therapist graduated and moved away.

Hindsight: The therapy format was wrong for what we needed. It was set up to treat the parent/child system and ended up giving me lots of parenting advice that I already knew and had already applied. The next time I set up therapy I specified individual therapy.
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Therapist #2: For Gleek. She was a woman in her fifties with a long practice dealing with children. I deliberately sought that out because I wondered if my reaction to the other therapist had been an inexperience problem. This therapist was recommended to me by Gleek’s church leader, specifically because the therapist did art and play therapy. I found the therapist good and easy to talk to, but Gleek became increasingly resistant to going. “I don’t like how nosey she is.” Gleek said. Ultimately Gleek was doing so much better (because of medication and changes at school) that the therapist and I agreed we could stop therapy for a time.

Hindsight: Gleek did not have the right rapport with the therapist, so the therapy was not working as it should. It is possible that the therapist and I could have banded together to push through her resistance. Instead we opted to give her some control. That turned out to be the right call. We did establish that if life gets hard again, back to therapy we’ll go. But we’ll pick a different one.
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Therapist #3: For Link. I chose to go through the comprehensive clinic at BYU in part because it was far less expensive than other options and we were paying out of pocket for everything. I also thought that a young male therapist might have a better chance to connect with Link. This meant a grad student therapist again. By week four the therapist was having trouble getting Link to open up, so he brought me in for a joint session. It went really well. Unfortunately this meant that the therapist always brought me in for all the sessions. It became relationship therapy between Link and I rather than the individual therapy that Link needed. He needed solutions which did not include me. Also I think that speaking with me was more emotionally rewarding for the therapist than speaking to Link. The therapist could poke at my pain and induce me to open up. He was completely unable to do the same for Link. I kept trying to keep him focused on Link, but we ended up talking about me half the time anyway. It took weeks of me being increasingly stressed and resentful of the therapy, and Link feeling the same way, before I recognized the problem and called the clinic to request a different therapist.

Hindsight: This was a similar problem to the one with therapist #1. We had different visions for what the troubles were. I probably could have had a meeting with the therapist and re-calibrated the treatment, but starting over was less work and Link was more likely to cooperate. Continuing to make Link go to a therapist he didn’t like would have damaged my relationship with Link.
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Therapist #4: For Sandra. This was actually the same therapist as #2. She hadn’t worked for Gleek, but I’d enjoyed talking with her. The interactions with Therapist #3 had forced me to see that I was struggling, so I made an appointment. It went well. So did another one. Unfortunately she was by far the most expensive therapist we’d gone to and everything was out of pocket. We finally got onto an insurance plan which covered mental health care (Yay Affordable Care Act!) and she wasn’t listed on the plan. I’d paid her prices for Gleek, but it was harder to justify paying her prices for me. So I’d delay between sessions until I was in crisis. Then I’d call for an appointment…and she’d fail to call back. I’d call again and she texted two days later saying “I have an appointment available in two hours, does that work?” It did not work. Also, I’d requested a phone call to make the appointment, not a text. Ultimately these communication issues were the reason I dropped her. If I gathered the emotional energy necessary to call and set up an appointment, I needed the process to go smoothly rather than stretch out for days adding stress to my life.

Hindsight: She was a good therapist, but her business running skills interfered with my willingness to go to her. My next attempt at therapy for me will be an office with multiple therapists and a full time secretary who handles appointments.
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Therapist #5: For Link. This was the therapist we were assigned after therapist #4 went badly. I’d considered changing away from grad students, but decided to give it one more shot. By this time I’d been told the advice about giving a therapist 4-6 sessions to connect, so that was the plan. Right around session four, the new therapist ran aground in almost exactly the same way as the prior one had. Link wasn’t opening up. He’d give answers, but they were mostly shrugs or “I don’t know.” This therapist met with me separate from Link and hammered out a new plan. He started playing games with Link. The whole goal was to connect first and then gradually use that connection to teach Link how to connect without games. Then they could get at emotional issues. It was a brilliant plan. I approved. I think it would have worked. Unfortunately about a month later the therapist made a personal decision that took him out of the grad school program. He worked to hand us off to another therapist, and was as conscientious as he could be, but it was still a big blow to Link and to me.

Hindsight: Not much useful to offer here, except that this process can be hard in unexpected ways.
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Therapist #6: For Link. This was the therapist that therapist #5 handed us over to. They had this nice transitional plan where the new therapist would attend sessions with Link and the prior therapist. She was a young and pretty grad student. Link met with her twice and told me that he wasn’t comfortable with her. I wasn’t surprised. There had been a young pretty female math teacher at school that Link had refused to go to for help. Talking to people is hard for Link. Talking to girls is even harder. I called off the appointments and put Link on a therapeutic hiatus while some other things settled down in our lives.

Hindsight: Link needed an older brother/ role model and a young female therapist was not going to work in the same way. An older, motherly or grandmotherly woman would probably be fine. Any future therapist selections for him will keep this in mind. I’m also likely to try a therapist with a different approach, such as dialectical behavioral therapy instead of cognitive behavioral therapy.
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Therapist #7: For Patch. I think we began seeing this therapist before Link’s good therapist quit, but I’ve put her last on the list because she’s the only one whom we’re still seeing. She’s a grad student at the same clinic as Link’s therapy. She and Patch hit it off right away. It helped a lot that I recommended that games be part of the therapy. (Having learned from Link’s experience that this can foster connection.) I can tell the therapy is working because Patch doesn’t resist going. Often he is excited or happy to go. Also the therapist usually brings me in for the last few minutes to let me know what they talked through and what would be a good focus for the week ahead. I know that they really are beginning to dig down in and untangle some of the emotional knots that Patch has been carrying around.

Hindsight: This is how you know when therapy is working, life feels easier. It is subtly easier so that you may not even be sure if it being easier is because of the therapy.
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I don’t have many concluding thoughts, except to say that writing up this post helped me to see why it is sometimes necessary to try multiple therapists before settling. Each therapy relationship helps you learn more about what you need and want in a therapy relationship. It is not a failure to need to ditch one therapist and try out another one, it is a refining process. I wish I’d known that when I first started, it would have made the process easier.

Medication is Complicated

By / May 11, 2015 / 2 Comments

It was a routine trip to the pharmacy. I had seven prescriptions to pick up. That right there says something. Somehow a seven prescription pharmacy trip has become “routine.” Three of them had been called in over the phone. Four required me to hand signed pieces of paper to the pharmacy staff. I understand the reasoning behind requiring paper with signatures, yet the need for it adds layers of complication to my life. Any time the prescription needs a refill, I have to call the doctor’s office and either physically go get a piece of paper or plan ahead to allow time for them to mail the paper to me. Add in the fact that the insurance companies keep track of when they last filled the prescription and they won’t fill early, so there is a window of only a few days during which I’m allowed to refill a prescription before we run out. I always try to hit the early end of this window because sometimes the pharmacy doesn’t have the pills on hand and they have to be ordered in. Tracking all of this has become routine. I’d done the math, calculated the windows of time, and taken myself down to the pharmacy to pick things up.

Then the pharmacy register rang up at $500 instead of the $35 I was expecting.

When I picked a healthcare plan last November, I paid close attention to the prescription copays. I picked a plan with $5 copays for their Tier 1 medicines. Tier 2 costs $35 and Tier 3 is $175. It is a system designed to encourage people to switch to the Tier 1 medicines. I don’t really know all the reasons that medicines get assigned to various Tiers. We had some stress in January because my kids had to be switched to a different form of their medicine because capsules were Tier 3, but caplets were Tier 1. Then we had to get special permission for Howard to be on the same medicine because anyone over the age of 18 needs a doctor’s approval, but under that age the insurance company doesn’t require preauthorization. So we jumped through hoops, and settled everyone onto their medicines. And all was well for a couple of months. I was relieved each time I picked up a prescription and it cost only $5. We’d paid much more than that in years past and it had been a financial burden on our family.

“That price can’t be right.” I said.
“You can call your insurance company” the pharmacist said. So I stepped over to a bench and called the customer support number on the back of my insurance card. It was a long phone call with multiple waits on hold while I watched my frozen groceries in my cart slowly thawing.

The systems around health insurance are arcane and complicated. I have to make far too many phone calls because automated systems aren’t as automated as they should be. Yet any time I’ve talked to an actual person on the phone, both for my insurance company and for the government healthcare marketplace, they have been very kind and helpful. The pharmacists are helpful. I end up with this sense that we’re all tangled up together in some weird bureaucracy where the key focus is not on best treatment, but on appeasing the computer system so that treatment can be extracted.

The customer support lady looked up the pharmacy order and found that I’d been billed at a Tier 3 rate. She looked up the medicines and they were all listed as Tier 1. Then she looked at another place and they were listed at Tier 3. Ultimately she had to put in a support ticket to…somebody… to figure out which Tier is accurate. There might have been a change in the formulary listing for these medicines or maybe it was just a mistake. She says she’ll call me back once she hears back. I have her name and number, because I fully expect that in a day or two I’ll have to call her because she hasn’t yet called me.

In the meantime my kids are taking medicine once per day and we’re running out of pills. It may be that the insurance company has changed these meds to Tier 3, which would mean that I have to research and figure out which medicines are comparable and are Tier 1. Then I have to call their doctor and discuss a med change with him, discussing the options and what possible consequences there might be from switching medicines. Then I would either have to drive to Salt Lake City (2 hours round trip) or wait two days for the prescriptions to be mailed to me. After which I then have to make another trip to the pharmacy (40 minutes round trip).

Just today my “routine” trip to the pharmacy cost me 2 hours and significant emotional distress. And I still don’t know how much more time it is going to cost.

So when people accuse parents of putting kids on meds for the parents’ convenience, excuse me if I laugh out loud in derision. There is nothing convenient about this. I would dearly love to be able to skip it all. I wish that willpower, diet, and exercise had worked for us. That would have been lovely. I track and manage all of this medical mess only because I can see that the medicines make a positive difference in the lives of my family. As an ancillary effect, my life is better too, for which I’m grateful. But better is not the same as easy and it definitely isn’t the same as convenient. The minute my family members don’t need medicine anymore I will ditch the stress and expense. I think that some of them will reach that. I suspect that others will need medicine for most of their lives. For this week, I’ll be tracking remaining medicine, waiting for phone calls, and making phone calls. Again.

UPDATE: The insurance company called me back the next day. It was a glitch in their system. The pharmacy re-ran the prescriptions and they came up at the correct $5 rate.

Finding Someone with Answers

By / March 11, 2015 / 2 Comments

I cried when I got back to the car. I almost didn’t make it there before the crying overtook me. For the first time in I don’t know how long, I’d talked to someone who actually has the resources to help my son. It was the first time I met someone who had a road map that could take us from where we are to a future where my son is in control of his own life. Some of the tears were relief. Some were just because hope hurts. It hurts because of how often I’ve had my hopes crumble apart. Crumbled hopes are a natural side effect of trial and error. They become sharp and painful when time feels important and the stakes are emotionally high. I’m steal healing from my prior encounters with hope shards.

The meeting was with Vocational Rehabilitation. It turns out that there is an entire governmental department whose mandate is to help people reach independent adulthood. It turns out that they can start helping at age 14, which would have been nice to know three years ago. We have a slow paperwork process ahead of us, but beyond it is vocational diagnosis, social skills classes, and job coaching. We’ll have a case worker who is focused on helping my son pick a type of job, get the education for it, and apply. This is the guidance that I prayed for last September. Or I hope it is. I’m ready to walk out across the shiny hope, trusting that it won’t turn to shards beneath my feet.

It never occurred to me that vocational rehab could apply to my family. What we deal with is subtle, only noticeable when the troubles accumulate. But the counselor says that auditory processing disorder and ADHD are valid reasons to apply. So we have an application and an intake appointment. I expect the process to be slow and paperwork heavy, but I’m happy to put up with that if it gives my son a map and a guide for becoming an adult.

Educational Off-Roading

By / January 16, 2015 / 5 Comments

There are things I don’t realize I hope for until the moment when I realize they won’t happen. In that moment I am smacked with sadness just as I have to figure out how to readjust my expectations. It was somewhere in November or December that I realized Link’s high school education was going to veer sharply from the standard path. He needed it to. I needed it to. Yet I still had to find that part of myself which had expected “normal” and make it let go.

The new plan is a partial home schooling arrangement. Link does most of his coursework through online packets. Most of the time he does that work in the computer lab at school. Sometimes he does that work at home. He still has a few regular classes on campus. I’m functioning as the enabler, assistant, and aide. I don’t make the curriculum, but I assist him in understanding what he is expected to do. Link loves this new format for school. For the first time he isn’t constantly overwhelmed by noisy classrooms where the coursework goes so slowly that he tunes out and misses important assignment details. He doesn’t get surprised by assignments being due when he didn’t even know he had one. He doesn’t have to fret over knowing he has an assignment, but not being sure how it is supposed to be done. All of the instructions are right there in front of him, patiently waiting for him to absorb them and do the work.

I can see how this arrangement is going to be good for him educationally. We’ve spent years adapting his school work to allow him to keep up in a regular classroom. Now he has to struggle with types of assignments that he’s never done before. But instead of simply failing an assignment and rushing onward because the class can’t stop for him, he will be required to re-do assignments until he has learned the necessary skills to move onward. In the areas where the assignments are easy for him, he doesn’t have to sit around and wait for other students to catch up. For a student like Link, who has some significant learning disabilities that impact some of his educational capabilities, this is brilliant. Especially since Link also has some off-the-chart educational advantages in other areas.

It seems like a perfect plan, but I’ve spent quite a lot of time being afraid that it won’t work. I fear that it will cause as many problems as it solves. In this plan Link has to sit for hours in a room mostly by himself. He has to keep himself working. He’ll have to work longer and harder hours than he has been used to doing. Unlike regular classrooms, those hours will all be focused thinking. Some of the skills he’ll have to learn are how to run the necessary software and format assignments for himself. There won’t be a teacher there tap-dancing and trying to keep him engaged. Instead it is just Link, the material, and Link’s own motivation. It is very possible that Link will not step up. That he won’t work at a rate sufficient to keep him on track for graduation next year.

This is one of those hidden hopes which I have had to acknowledge: I really want my son to graduate with his class. Ultimately the decision to do so is up to Link. I’ve done everything in my power to turn that goal from impossible to possible. Now he has to do the work to make it happen. It has been important for me to see that graduation goal. Even more important is for me to consciously recognize that I may have to sacrifice the graduation goal in service of a much more important goal: preparing Link to be a self-sufficient adult.

This is one of the other potential drawbacks of this plan, social isolation. In order for Link to be ready for adulthood, he needs to interact with other people. He needs to learn how to socialize and make friends in ways that he hasn’t yet learned how to do. He needs to figure out how to communicate his needs and how to listen to the needs of others. Sitting in a room by himself does not help him accomplish any of the important social learning which happens in high school. We’re going to have to figure out other ways to make sure he learns those things. That will mean more work for us as parents. This whole plan is a lot more work for me than the standard educational route. On the other hand, I’d much rather do this work than what I have been doing in the past few months. I was constantly manageing emotional crises as Link began to despair and consider himself a failure in all things. This new educational approach means that for the first time in years, Link can picture himself succeeding. We are both very aware how fortunate we are that the administration at his school is willing and able to support this plan. There are other schools in our school district who would not do the same.

We are now at the end of the first week and we have mixed results. Link loves it, but we’ve been confused by assignments frequently. I had to purchase and install Microsoft Office to make sure we had the same tools at home that Link has at school. We’ve spent lots of time just figuring out how to find necessary information, how to take the tests, how to submit assignments. And at the end of this first week, Link had a moment of despair because he could see that the work was all going too slowly. He thought he would fail at this too. I told him it is too early to tell if this will work. We need to keep going, ironing out the wrinkles, giving this our best try. So we’ll keep rolling along bumping our way over weeds and gullies as we travel parallel to the standard path.