question-and-answer

a while back, i saw a post on Diary of a Mom’s Community Support Page that i thought i could answer pretty well. i’ve wanted to re-post my answer here for a while. all the context you need to know (the posts are still on the Support Page, but i prefer to give as little information as i can while still giving sufficient context for my answer to make sense) is as follows: a great mom of a spectrum kid was struggling with the news that her other child had received diagnoses of OCD and bipolar. she feared the effects stigma would have on his life, and was worried about how he’d be treated (not to mention potentially medicated) by doctors, especially given that he is still relatively quite young. here was my response:

Hi, (Name)

I’m “emma at lemon peel” over in Jess’s list of “autistic adult blogs” to the side there, and in addition to taking a number of medications (a couple for ADHD, a couple for anxiety/depression) at the moment, I also happen to be a giant psychology, diagnostic theory and pharmacology nerd. It’s…something of a special interest, to put it lightly. And I can try and share what I hope is some concrete support/advice you’ll find constructive or helpful.

When it comes to dealing with powerful, complex medication possibilities and children, a few important things come to mind first for me:
Medication should always be about helping the medicated person feel more safe, more comfortable in their own body/head, more able to engage and participate in the world in the way that they want to. Most psychiatrists aren’t great about this–for those with “behavioral problems” in particular, there’s often a focus on normalization, and/or on reducing those behaviors make the caregivers and physicians feel stressed or uncomfortable. And when the person being prescribed medication is a kid–not to mention a kid with developmental differences–it’s even easier for parents and doctors to feel comfortable making medication decisions for the patient.
Also, your gut feelings concerning the medications and treatments specifically employed to treat bipolar spectrum/behavioral issues are entirely justified. I have a large number of friends who are my age (college-age) and bipolar, and finding the right medication regimen (if medication works at all) continues to be a complicated, often unpleasant process for them even as young adults. The medications in question are numerous, diverse, and often powerful in their ability to help people live their lives, and in their ability to cause side-affects that suck.

All that said, these are some things I know that can help/be done to make this as positive and constructive a process as possible for your family in general and your son in particular:
1. As much as you can, engage your son in the process of figuring out what supports and/or medications–if any–make him feel better, and which do not help, or make him feel worse. Make sure he knows that the reason you and his doctors are talking to him about possibly taking medicine is because all of you want to help him with things he struggles with, and with experiences he finds scary, painful, or confusing. Even ask him, if he’s willing and able, what parts of having his brain and his body are the hardest, or the biggest problem from his perspective. And if/when he tries a medication or other treatment, check in with him about how he is feeling, talk about any changes you notice, or he notices, in his emotions and behavior. Make sure he knows that when it comes to determining whether or not a given treatment/medication helps or hurts him, his opinion is the most important opinion. Figuring out medication, especially, is a process, and that process can start at many different times in a person’s life–trust your gut, and your kid, and together you’ll be able to stand up for what you think is or isn’t necessary at this point in your lives.
2. You mention that (his other bio parent) also received a bipolar diagnosis. Obviously I have no idea what you and your son’s relationship with him currently is, but I do know that when it comes to psychopharmacology, knowing what medications worked for a parent (or sibling) can often make finding the right medication a much quicker and easier process. If he, your other child, or any of your son’s other close biological relatives have taken medication for bipolar spectrum disorders, and had good experiences with one or more specific drugs, finding out the names and dosages of those helpful prescriptions can really help doctors figure out what medications might help your son.
[Real Life Story: My father and I are extremely similar personalities, we’re both on the spectrum, I look just like him, etc. etc. And when I started medication for depression/anxiety, my psychiatrist made sure that the first thing we tried was the medication my father has been taking for depression/anxiety for decades. Not only was that exact same medication life-changing for me as well, it turns out that me and my Dad take the exact same dosage.]
3. Keep your worry and your skepticism close at hand–medication can do great things, but for some people it simply does not help them in the ways they need to be helped. Some of my mentally ill friends take medication. Some do not. Different people need different things. You and your kid are always the best judges of whether or not medication is contributing to, or detracting from, his comfort and wellbeing. Doctors are great resources, and integral to getting access to documentation and lots of supports…but you guys always have the right to say “No, that is not a treatment/strategy we are going to try. No, that is not the problem we need to focus on. No, those are not our priorities.”

I hope that was helpful, and my heart is with you all as you figure these things out. If you have any more questions, feel free to email me at the email address I give on my blog page.

-Emma

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6 thoughts on “question-and-answer

  1. Emma,

    That mom was me. You will never know how your words and advice have helped me. Or how it changed my entire perspective on my role in helping my children (my older son is an aspie).
    In regards to my five year old boy, whom I inquired about, I felt like I was suffocating with fear of making the wrong decision and you gave me a lot of strength by reminding me that the my son’s health and happiness will always be my true north.

    You are a treasure. I don’t say it lightly. Your videos are the best. I recently reposted your review of the review of the play “The curious incident of the dog in the nighttime.” A friend of mine commented and quoted you: “no human being is a fixed point.”

    No. No human being is.

    Thank you.

    Amanda

    • Oh my goodness, Amanda, this makes me so happy. I’d always wondered how things went! And I know that one of the big reasons I ended up responding to your question in the first place was because I read the way you talked about your boys, and thought “Whoa, this is someone who really gets it. Even if she doesn’t feel like she gets it right now, she really gets it.” So now I’m extra happy to find out that cool Anonymous-Amanda and Actual-Person-Amanda (who writes awesome comments on the blog’s Facebook page) are one and the same person!

  2. Emma I struggled a LOT w medication for my younger son bc my older had such bad experiences. A good “rule of thumb” I learned (I forget from whom) is the WOW factor…if after a day or two it’s not there, it’s not the right med. now our struggle is different..he had a huge growth spurt and it’s obvious talking to school and seeing him at home it needs adjusted but dr refuses to do so without an appt and taking him to dr is NOT a viable option atm :/ his anxiety is thru the roof. They don’t accommodate at all unfortunately and even when we try can’t even get a weight (which I think is the point)

    • I’m always a little wary of giving out the “Wow Factor” advice when I don’t have personal experience with the medication the person is trying out for the first time. Because some medications do take a while to have noticeable effects, and sometimes it’s a dose issue, rather than an issue with the medication itself. But I have to say, in my experience (with SSRIs and stimulants for ADHD), that “Wow Factor” is totally a thing. I remember taking a 25 mg dose of the SSRI I take for the first time, and like…instantly going to my mom and being like “IS THIS HOW NORMAL PEOPLE FEEL ALL THE TIME? IF YES, YOU ALL SUCK.” And like, that’s 1/4 the dose size I actually ended up taking daily.
      I’m so sorry to hear that you’re in that situation! I have…a lot of really intense doctor-feels stories. Especially with regard to prescription management. It’s just a giant disaster, really. I feel really lucky in that I’ve been able to find a psychiatrist who is willing and able to manage dosage changes/issues with me via email in emergencies, rather than requiring an appointment. But it took me years to find her, and I live in a big urban area.

  3. This is great information for parents to consider. I agree, and along the way, more suggestions were given to medicate my son that regarded the feelings of the adults around him more important than his experience with the world. I always, always work hard to consider his experience first. It’s so much easier now that he is a teenager, but almost more vital when they are younger. Some of our medication experiences have been life altering…and not in the good way.

  4. shared on my facebook with this comment “I am beyond grateful for people who can speak up about this stuff from the inside. Finding right medications is tricky and especially difficult for people who don’t communicate verbally”.

    I’ve been a psych nurse for a long time and with good intentions, I have given some people some bad meds. The way to change this is by people who CAN speak about it doing so. Well, and then, other people have to listen!

    Medication is ALWAYS a cost-benefit tradeoff, and not just for psych conditions. People are under the impression that medicine fixes things and restores everything to perfect. I have had people tell me they don’t HAVE high blood pressure, because they are taking medicine. No, without the medicine, they’d still have the condition; it hasn’t fixed the problem, it has patched it to prevent further negative outcomes. Pharmacology is a tool, and maybe the best one we have in many circumstances, and in many cases the benefits outweigh the costs, but not always.

    I have seen people put a moral dimension on taking medicine, but it’s not that easy. With any tool, understanding more about how it works makes you a more effective user. You might get your nail pounded in if you just close your eyes and swing, but hammers aren’t magical, they need to be directed attention paid to their effects, and you are more efficient and effective if you look at what you are doing, and learn as much as you can!

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