reader questions – Real Social Skills

Taking pills when it’s difficult to do so

December 22, 2016June 21, 2021 Real Social Skills

arrowhearts said to realsocialskills:
I was wondering if you knew of any tips or resources for taking (pill-based) medications daily when for a variety of reasons (anxiety, forgetfulness, bad taste, fear, etc) it is difficult to do so? Also thank you so much for the time and thought you have put into this blog! It has been very useful and informative to me!

realsocialskills said:

There are some potentially useful reminder/tracking apps for iOS, Android, and Apple Watch:

Mango Health, which is gamification-based and offers rewards/badges for taking your pills every day. (It’s not very flexible.) It also has notifications and reminders.
(If you like gamification, HabitRPG may also be helpful).
Medisafe, which is in no way gamified and isn’t trying to make you have fun or like anything. It’s just an app that tracks medications, gives reminders, and has a few other features.

Getting help remembering from someone else:

Some people find it helpful to have someone remind them to take pills.
Or ask them whether they’ve taken a pill.
Or to bring them the pills.
(Both medication apps allow you to link another person to your pill-taking records, if you want to.)
This can also backfire, and isn’t the right option for everyone.
(One way it can backfire is that if you ask people for help remembering, they may think that it’s their job to *make* you take it, whether you want to or not.)
(Needing help with the logistics of pill-taking doesn’t mean that you need someone else to take over your medical decisions, but a lot of people think it does).
Some people also find that their anxiety skyrockets when others pay attention to their pill-taking.
Sometimes this is less of a problem if it’s mutual (where you remind someone about their pills, and they remind you about yours.)

Help can also be more occasional:

Some people need occasional help figuring out the logistics, or overcoming anxiety or other barriers. It can help to have people you can ask for occasional help, along the lines of:
“I need to take my pill, but I need to eat before I can take it, and I have no food. Can you help me figure out how to eat?”
“I can’t make myself take my pill, can you tell me to go do it?”
“Can you remind me that it’s ok to take pills and that I’m not being lazy or something?”
“I’m having trouble with the pharmacy’s online refill system, do you know how it works?”
tl;dr: Needing help doesn’t mean needing others to take over, and it doesn’t necessarily mean needing supervision or ongoing daily assistance.

If the problem is that the pills taste disgusting or are hard to swallow:

Sometimes this is a problem that goes away over time.
Sometimes if you keep tasting a particular taste regularly, it become less disgusting.
Similarly, many people who initially find swallowing pills difficult find it much easier as they get more practice.
You can also put the pill in a spoon of something like applesauce, yogurt, or pudding. That can mean that you taste and feel the pudding and not the pill, which can make swallowing easier for some people.
Some people find it helpful to chase pills with a liquid they like.
(A caveat about that:
If the taste/sensation makes you feel sick to your stomach or like you’re going to throw up, it may not be a good idea to drink/eat something you really like right after.
Because you can end up associating that feeling with the thing you like, and then develop an aversion to that too.
But if the nasty-tasty pills *don’t* make you feel sick, washing the taste away with something you do like can work really well.)

If the problem is irrational or mostly-irrational anxiety:

Reminding yourself that the anxiety is irrational can help.
Reminding yourself what the pill does and why you want to take it can also help.
And once you get used to taking the pills regularly, the anxiety may go away.
Some people find it helpful to think things like “This is scary, but I can do it, and it won’t always be this scary.”
One reason that taking pills can be scary is that it can be an unpleasant reminder that you need the pills.
If that’s a barrier, it might help to remind yourself that you need the pills whether you take them or not.
Or you might know that it causes side effects you hate.
It also might help to complain about this to yourself, along the lines of “I really !#$!$# hate having to take this pill”.
(Having to take pills can suck, and it’s ok to have feelings about it.)

If the issue is reluctance or reservations about the pills:

I’m somewhat uneasy about mentioning this, because logistical difficulty is often dismissed as unwillingness to take pills.
That said — sometimes the problem really is that someone is trying to force themself to take pills that they don’t really want to take.
Everything is harder when you don’t want to do it.
There are all kinds of reasons that people might not want to take medication. (Some good reasons, some bad reasons).
Eg: Some people feel ashamed of needing medication, or feel like they should be able to somehow will themselves to not need it.
Eg: Sometimes the side effects really suck. Sometimes side effects mean that a given treatment needs to be reconsidered.
Eg: Sometimes people take pills that don’t seem to be working, and that can be demoralizing.
Eg: Sometimes people are misdiagnosed, and prescribed medication that isn’t appropriate, (or suspect that they were misdiagnosed).
Eg: Sometimes things that seem like a good idea in the doctor’s office don’t seem like a good idea in day-to-day life.
Eg: Sometimes when people have been taking a pill for a while, they forget what it was like without the pill — but keep noticing the side effects. This can make it hard to feel that the pill is still worthwhile.
Eg: Sometimes people come under intense pressure from others to believe that a particular pill will fix things. This can get complicated if the pill isn’t actually the right solution.
(And there are any number of other reasons).
Sometimes the solution to this is changing your attitude towards your medication, and sometimes the solution to this is changing your treatment plan. (And sometimes it’s a combination of both).
So it might be worth asking yourself: How do you feel about taking this medication, Is this a pill you want to take?
Why are you taking it? Why was it prescribed? Do you agree with the reasons?
Are you having side effects that suck? Are you questioning whether the side effects are worth it?
Is there another option you want to consider, or does this seem like the best choice for now?
If you really are reluctant, err on the side of taking that seriously. You may have a good reason, and it may lead to needed changes.
If you think about it and decide that your reluctance is irrational, that can also be very helpful.
Either way, if the problem is reluctance, thinking through things and getting to a point where you feel confident that you’re making the right choice can help a lot.
*All that said*, it’s important to remember that taking pills can be hard for all kinds of different reasons.
Some reasons it can be hard to take pills have absolutely nothing to do with how you feel about them.
Wanting to take pills doesn’t always make it possible to take pills.

Sometimes pills are easier to take if you associate them with an action you do every day rather than with a time. Eg:

If “take nighttime pill at 11pm” doesn’t work, “take nighttime pill when I brush my teeth” might.
If “take morning pill at 8am” doesn’t work, “take morning pill after I eat breakfast” or “take morning pill when I get into my car/bus to go to work/school” might work.
Or “I’ll take my pills when my kids come home from school and I’ve given them theirs”.

Sometimes changing where/how your pills are stored can make a big difference, for instance:

Keeping pills in the medicine cabinet can make it easier to take them when you brush your teeth
Keeping pills next to your bed can make it easier to take them when you get up and/or when you go to bed
If you frequently forget to take your medication, keeping some in your purse/ backpack/etc can make it easier to take it once you realize you forgot.
If you need to take medication when you eat, keeping the pills near your food might help.
Some people find pill sorters really helpful. They’re clear box-things with a box for each day, and at the beginning of each week you put a week’s worth of pills in them. This can also be a way to tell whether you’ve taken a given dose or not.
Sometimes you can get pills packed in blister packs, with a compartment for each day.
(Birth controls are usually packed this way, and some pharmacies can pack any kind of pill this way).

If part of the issue is privacy:

Sometimes not wanting other people to know can complicate taking medication.
This is a common issue for birth control pills — and there are cases you can get for birth control packs that look like little makeup cases. (So you could keep it in your purse and it would just look like you have makeup).
(If you’re in a situation in which it’s unsafe for others to know that you’re using contraception, birth control pills may not be the best option. An IUD or Depo-Provera shots might be better. Planned Parenthood can help you consider options.).
Similarly, it might help to keep pill bottles inside little containers that don’t look like pill things (eg: Claire’s has coin purses that are a good size for this).
Or to get a lockable toolbox and keep the key on your keychain.
Or to keep pills in your gym back if you have one — most people are going to assume there are gross sweaty clothes in there and be reluctant to look.
If you’re in college and don’t want your roommate to know about your pills, it might work to keep your pills with your shower stuff, and take them when you shower.
Or to keep pills in your backpack, go to the bathroom after class, and then take the pills there

If part of the issue is that they’re hard to afford:

If you’re taking a name-brand drug, look online for a coupon. A lot of companies offer them.
If you’re taking something insurance isn’t covering, GoodRx can often save you a LOT of money. (It tells you about coupons, and shows you which pharmacy near you has the lowest price.)

feelings and therapy

September 10, 2015June 21, 2021 Real Social Skills

Anonymous said:

When I have therapy or counselling, I notice that if I deal with real emotions in a way that is good for me, that I have to drop the neurotypical act of behaviours that show I am doing polite and kind listening.

I’m still listening but just not showing it in the way people prefer. When I do this, I notice that they get very hard and uncaring, even though I do it to make counselling work for me so I can tune into myself instead of acting. Do I give up?

realsocialskills said:

I’m not sure what you mean by “Do I give up?”.

If you’re asking about dealing with real emotions – I don’t think that you should give up trying to find a way to deal with your real emotions. I think that everyone can learn to deal with feelings, both feelings they’re having and feelings that other people are having. I think it’s really great that you’re working on that, and I definitely don’t think that you should give up.

Which leads to the question: What should you do about your current therapy situation? I don’t know the answer to that. I think you’re the best judge of that. Here are some considerations that might be worth thinking about:

I think that you have a lot of options. Some I see (there are probably others):

Trying to negotiate with your current therapy to make therapy work better for you
Trying to find another therapist
Staying with this therapist, but not expecting much out of it (or giving it time)
Trying a different kind of therapy
Deciding not to do therapy for now

Regarding working things out with your current therapist:

If you’re with this therapist voluntarily and could quit if you want to, trying to negotiate might be a good option
It might be worth telling them that you need to be able to drop attentiveness behaviors to be able to process
And that you want to process and deal with these feelings in a real way, and that you can’t both look attentive and do that
Some therapists are receptive to that kind of feedback; some aren’t
Therapists are human, and sometimes they misread things. Sometimes if you point it out, it helps.
Some therapists are not receptive to that kind of feedback, and might get really annoyed or manipulative
If it turns out that yours isn’t interested in meeting your need to drop affect in order to process feelings, it’s likely that they are not the right therapist for you
And that’s information worth having.
(If you’re stuck with this therapist no matter what, this might be riskier. I can’t tell you how to evaluate the risks in your particular situation, but I think it’s important to consider whether there might be some)

Not all therapists are the same:

It’s fairly common for people to need to look unusual in order to be able to engage with emotions in therapy
Working through emotions and psychological issues is hard work. Sometimes it means you can’t manage looking attentive
This isn’t a secret. A significant percentage of therapists expect that many clients won’t look like they’re listening when they’re processing.
Some therapists have the skills to handle this constructively; some don’t.
If you can choose who your therapist is, it might be worth trying to find a therapist who already understands this

Not all kinds of therapy are the same:

Not all therapy is about feelings.
Some kinds of therapy are about behavior, or learning specific skills.
If what you want from therapy is to learn to tune into yourself and deal with your feelings constructively, it’s important that you do a kind of therapy that helps with that
For instance, psychodynamic therapy or art therapy might work well for that. CBT probably won’t, since CBT is about behavior more than it’s about processing.
Just, generally speaking, it’s important to make sure that you and your therapist agree on what the goals are, and that the type of therapy they do makes sense for your goals
It might be worth learning more about types of therapy, and thinking through whether you’re in the kind you want to be in, or whether you might rather try a different kind

More generally regarding therapy:

There are a lot of therapy evangelists who talk about therapy like it’s the end all and be all of making progress in your life. They talk like therapy is risk free, universally helpful. They also talk like, if you’re not in therapy, you’re doomed to stagnation and that you’re essentially giving up on yourself. Real therapy is not like that. Real therapy is a set of people with a set of tools, which may or may not be helpful in given circumstances.

Real therapy is a mixed bag. Not everyone has the same experiences with it. For instance:

Therapy can be game-changing.
A lot of people find that therapy allows them to make progress dealing with problems they’ve felt completely trapped by for years.
Others find that therapy gives them skills or insights that dramatically improve their lives.
Others find therapy completely unhelpful.
Some people finds that it helps some, but not that much.
Some people are people are harmed in therapy.
Some people struggle to find the right therapist, but have really good experiences with therapy once they find someone who can work well with them.
And there are any number of other experiences.

I think there is no universal answer to “Should I work on this problem in therapy?”. I that’s always a complex personal decision. It depends on what you want and what you have access to and what you find works best for you. The answers to these questions are personal, and you’re the best judge of them.

And just, generally speaking: if therapy is not working for you, that’s a problem that you should take seriously. If you don’t feel respected, that’s a problem that’s a problem you should take seriously. Therapy is supposed to be helpful. If you’re in therapy that isn’t helping you, it means that something isn’t right and that it’s probably worth changing something.

Short version: Therapy means a lot of different things, and people have a lot of different experiences with therapy. There are different kinds of therapy and different kinds of therapists. Sometimes therapy is a good idea and sometimes it isn’t. It’s a personal decision and sometimes it’s complicated. Whether or not therapy is your approach right now, don’t give up on yourself. You can learn and you can make progress.

Resources other than ABA?

August 15, 2015June 21, 2021 Real Social Skills

Anonymous said:hello! I am a mom of a nine year old boy. I can tell he does not like ABA at all. I have taught him so much at home, and I am a first time and single mom. Schools only teach using ABA. My son does not like it one bit and is very behavioral.

I am desperate to try and find some other type of therapy for him. Do you have any suggestions? I so want this to stop. I feel it is abusive as well as being a waste of time. Thank you for reading this and for your blog!

realsocialskills said:

I don’t know what you should do specifically, because I don’t know you or your son or what the problem is. I do think there are some things worth considering.

Some thoughts about therapy specifically:

What is the purpose of the therapy?

Autism shouldn’t be seen as an indication that someone needs to be in therapy (particularly not many many hours of therapy), but it often is
Which means that a lot of autistic kids are spending time in therapy that they don’t need or benefit from
If that’s what’s going on, you might not need to find a replacement – it might just be a matter of stopping something that’s not needed
But sometimes there are reasons for particular types of therapy.
So, it’s worth asking:
Why does my son need therapy? What are the goals? Who are the experts who can help with this?

Some reasons that therapy can be needed:

Communication:

If a kid is having trouble communicating their thoughts and feelings in a way that others can understand, they need help with that.
Usually the best person to help with that problem is a speech language pathologist with experience with AAC.
SLPs with that experience can help kids with articulation if articulation is the main barrier, and can also help kids find ways other than speech to communicate.
Here are some resources for pursuing AAC implementation for your child.
ABA isn’t good for supporting communication because it assumes that the problem is lack of motivation, and because it’s biased towards doing things that make good data, which often interfere with communication development.
PECS isn’t good enough, because it doesn’t give people enough words. 9 year olds have more to say than requests.

Literacy:

Some kids have a lot of trouble learning to read
Kids struggling to read benefit from reading/literacy specialists
Literacy/reading specialists have specific training in teaching reading and troubleshooting reading problems. They have a lot of tools that behavior therapists don’t have. (Because behavior therapists are experts in training and modifying behaviors; they are not experts in teaching reading or figuring out what the cognitive barriers are.)
For some reason, this isn’t considered a special ed service, and it might not be offered to your kid if they’re in special ed (since people sometimes don’t think across categories)
But you can likely get it if you ask for it on their IEP.

Movement:

Some kids have a lot of trouble with fine motor skills or gross motor skills
Eg: Some kids need a lot of help figuring out how to hold a pencil
Or need to learn to move in safe ways: eg: some kids walk with a gait that will cause them long-term injury if it’s not corrected
Occupational or physical therapy can sometimes be helpful for this kind of thing
(Sometimes other things can also help, like general or adapted gymnastics or art classes and related things. Not every problem needs to be solved with therapy).

Emotional issues:

Being autistic is hard. Going through puberty is hard. Doing both at once is really hard.
Some kids benefit from psychotherapy to support them in dealing with this, or with other things
Finding a good therapist for kids can be very difficult, and I don’t really know how to do it well. But I do know that it can sometimes be a really good thing.
For some kids, animal-assisted therapy works better than talk therapy or play therapy

Psychiatry:

I want to be cautious about this because a lot of autistic kids and other kids with developmental disabilities are on inappropriate and dangerous medication
I’m *not* saying that your kid needs medication. I’m not saying that you should trust suggestions to medicate, or that you should cooperate with a school insisting on it.
What I *am* saying is that there are legitimate uses of psychiatric medication and that for some kids (and adults) it can be game-changing.
(Eg: Some kids gain the ability to understand school and do assignments if they take ADHD stimulants. For some kids, anti-anxiety medication opens up a lot of new possibilities.).
All that said, be careful about this. Some people might want to prescribe your child medication as a form of chemical restraint to control their behavior, and that’s not something that’s going to help them.
It’s important to have a clear sense of what the medication is supposed to do, what the risks are, and what side effects to look out for
And if a medication doesn’t seem to be helping or seems to be causing your child a lot of pain or distress, take that seriously and insist that it be addressed
(You can’t count on doctors to do this on their own initiative; you have to be proactive about making sure you understand the medication and the impact it has on your child.)

A general consideration: Don’t trust true believers and those who make excessive claims:

No approach works well for everyone.
True believers are not trustworthy. People who think their approach is 100% universally effective will not treat you and your child well if it’s not working, and will not know how to try other things or make good referrals.
No approach will cure your child’s autism. It’s probably better to avoid people who claim that their approach will be deeply transformative.
Therapy can teach your child skills. It can help them understand themself and the world better. It can help them communicate more effective. It can help them learn how to do things and troubleshoot. It won’t take away their disability or make them a different person.
Therapy is more art than science. Be suspicious of people who claim that their approach is strictly evidence based.
(They probably won’t treat you and your child well if your child has needs that their theory doesn’t predict. People who go on about being evidence-based tend to ignore the evidence of the real child they’re dealing with in favor of the ~evidence-based~ child they’re imagining based on their theory)
No therapist is a good match for every child, no matter how skilled they are or how good their method is
Be cautious of people who claim that all children like them, all children benefit from them, or that they just love all children. People who think that aren’t usually very good at seeing children as actual people, and are unlikely to be respectful. (And also unlikely to handle it constructively if your child dislikes them or finds the things they’re doing with them unpleasant).
There is nothing that all children like. (Consider the fact that many children hate chocolate and Disneyland).
The best therapists are people who are willing to be honest about what their skills are and aren’t, and the advantages and drawbacks of their methods. They will understand that match matters, and make a referral to someone else if it doesn’t seem like it’s working well.
Good therapists respect you as a parent and respect your child as a person. If a therapist is constantly making you or your child feel like a failure, something is wrong and needs to change. Therapy shouldn’t be like that. Therapy should be helpful and respectful.

Also, consider getting psychotherapy for yourself:

Parenting is hard. Single parenting is harder.
Learning to parent a disabled child in a world hostile to disability is also hard
Your own feelings matter, and it’s important to get support in dealing with them.
It can be hard to find a good therapist to help with this — a lot of therapists believe toxic things about disability and parenting disabled kids (because therapists come from the same culture as everyone else).
You may or may not be able to find someone good.
But if you can find a compatible therapist who shares your values, therapy can help a lot.
Just, generally — don’t forget that you are dealing with a lot of hard things and that your needs and feelings are important.
If you are miserable, something is wrong and needs to change.

Likewise psychiatric support:

Depression is common. So is anxiety.
Sometimes toxic support groups will encourage parents (especially mothers) to see despair and panic as inevitable results of raising autistic kids
But they’re not. Parenting an autistic child doesn’t mean you have to be depressed and it doesn’t mean you have to be constantly anxious and afraid
If you’re depressed or anxious, that’s a problem that needs to be addressed
And it might be something that requires medical treatment.
If you think that you might need help, take that seriously.
(And don’t try to treat your own mental health struggles by trying to fix your kid — it won’t work.)
I don’t know you so I don’t know if this is an issue for you. I just know that it’s common.

Beyond issues of therapy: can you get him moved to a mainstream class?

Being autistic doesn’t mean that your son has to be in an autism class. (Even if that’s where the school wants to put him.)
If he hates ABA, he might do a lot better in a regular class.
A lot of kids do.
Even if he can’t talk or demonstrate learning, he can still be in a regular class, and it can still be better than being in a separated ABA class.
You might have to fight for this in certain school districts, but the law is on your side if you want to do so. (And there are lawyers who specialize in special education issues).

More generally:

The Autistic Self Advocacy Network is developing resources on insurance coverage for services other than ABA.
The current version (as of this post) is about Medicaid, and information about private insurance is coming soon (so if you’re reading this post and it’s a while after I posted it, click through to the link even if you don’t have Medicaid)

Don’t do this alone:

School systems and insurance companies and options are really overwhelming.
It helps a lot to get perspective and support from parents (and disabled adults) with more experience with the school system you’re dealing with
You’re probably not the only one in the system who has had to fight to get the school to do something other than ABA. (The Department of Education recently put out a letter about this problem.)
If you can find other local parents of disabled kids who are working to get their needs met respectfully, it will probably get a lot easier
They might be hard to find, because parent support groups are often toxic. For some reason, this is particularly true of autism-related parent support groups. A cross-disability group might be a better place to find good support.
(There isn’t any educational need or support need that is completely unique to autistic kids. Everything is shared by at least some people in at least some other disability groups.).
It’s also worth the effort. Even one person who gets it will help a lot.
Among other reasons: You get better results at IEP meetings if you come with a support person (even if they’re not an expert).

Other support issues:

If he’s socially isolated, the solution to that may not be therapy. It may be to help him find people who he connects with well. Which may or may not look the same as it looks for most other kids his age:

That may not be kids at school. Not all kids have friends at school, and that can be ok.
It may not be kids his exact age. Some autistic kids get along better with younger or older kids, and that can be ok too.
One thing worth trying is finding other kids who share his interests.
Or a non-theraputic class on one of his interests. Or something else you think he might enjoy. (Eg: An after school art class. Or a video game club.)
The Internet can be game-changing for some autistic kids. Eg: Playing Minecraft on a server. There are some kid-friendly servers that limit access to people who follow the rules. (Autcraft is specifically designed for autistic kids; there are other kid-oriented servers. Which someone likes is a matter of preference.)
Disability-oriented groups can also be a good thing, if they’re not about therapy or changing people. Eg: The Special Olympics, which is about access to sports in an environment that values people with intellectual disabilities, can be a very good thing for some people who are eligible.
Social skills groups are not good for this, because they’re not about friendship, they’re about getting kids to act out a certain script of what adults think kids should act like. That’s not fun and it’s not a good place to make friends.
But a social club for kids with disabilities (or autism specifically) to hang out with each other can be a good thing. It depends on the context.

Some other non-therapy considerations on how to help your son: It’s important to listen to and talk to your son:

A lot of autistic kids don’t get listened to very much
If your son doesn’t use language very much, it’s still important to talk to and listen to him
If he has unusual speech, you might be inadvertently writing him off as joking or rude when he’s trying to communicate something.
Here’s a post about ways to listen to people with unusual speech.
Also, sometimes when autistic people repeat something over and over, it’s meaningful communication that needs to be taken seriously.
More generally speaking: Autistic communication and body language is often dismissed as meaningless, stimming, or sensory-seeking.
Sensory-seeking is a real thing, but a lot of what’s interpreted that way is actually meaningful communication. It’s important to listen.
The more you learn to understand your son’s communication, the more possible it will be to solve problems and help him learn

It’s also important to talk to your son about his disability:

If your son knows things about his disability, he can make better decisions
If he knows what you think about his disability, your actions will make more sense to him — and he’ll be in a better position to correct you if you’re getting it wrong
This is important whether or not he can talk, and whether or not you think he can understand
I wrote a bigger post about that here

Just, generally speaking, it’s important to involve your son in these kinds of things:

I’m not saying let him decide everything; that wouldn’t be remotely appropriate for a 9 year old.
But, just like with other 9 year olds, when there’s a problem involving him, he needs to be involved in figuring out the solution
Or when decisions are being considered about him, or some change might happen that will affect him in a major way – it’s important to remember that he has a perspective and that his perspective matters
He will know things about his behavior and his needs and his feelings that you don’t know — for the same reason any 9 year old kid will know things about themselves.
Even if you can’t figure out how to have these conversations effectively yet, it’s important to keep trying
Whether or not you know how to find out what he thinks, whether or not his perspective changes the outcome — it will make a difference that you care what he thinks and make an effort to listen to him

Give him the right words for feelings:

Sometimes kids with disabilities are only given the emotional language of happy/sad/angry/excited.
But kids have more complex feelings than that.
Kids with disabilities also feel shame. And humiliation. And loss. And grief. And anticipation. And disappointment. And joy. And love. And embarrassment. And any other emotion that anyone else feels
Their feelings are important and need to be acknowledged.
Particularly – shame and humiliation are very, very frequent experiences for disabled kids, and they’re often not acknowledged at all.
It’s humiliating to be teased for being disabled. Or to have to do pointless repetitive things adults tell you to over and over. Or to be constantly told that your body language is bad and wrong, or to be treated as though you’ve done something disgusting when you flap your hands as an expression of happiness.
“You feel sad” or “you feel angry” does not begin to cover what that feels like.
Disabled kids have the same range of feelings as any other people, and their feelings need to be acknowledged and taken seriously.

In short: You don’t have to do ABA (even if your school system wants you to). There isn’t really a general approach that replaces it — because ABA makes overbroad claims, and there’s no approach for which those claims are true. Good approaches address specific issues and don’t take over your life. There are a lot of different things that a lot of different kids (and adults) benefit from. Which things will be helpful to your son depends on what his needs are.

Anyone else want to weigh in? What have you found helpful for your child (or yourself) other than ABA?

keeping your privacy in the aftermath of a suicide attempt

June 23, 2015September 12, 2024 Real Social Skills

fenisoffended asked:

I’m visibly disabled as the result of a suicide attempt. Do you have any advice on how to respond when people ask what happened?

I think it’d be uncomfortable to tell casual acquaintances or strangers etc that I attempted suicide, but I don’t really know what else to say other than a flat-out lie.

(It was an overdose, so saying the cause without mentioning suicide would also make people uncomfortable and they might think less of me)

realsocialskills said:

I think there are three basic approaches that allow you to keep your privacy without lying:

Tell a partial truth
Use humor to deflect the question
Say that you don’t like to talk about it

Telling a partial truth works by saying something that is true or true-ish, doesn’t cause their mind to jump to suicide, and (ideally) doesn’t invite further questioning. Some possible phrases along these lines:

“It’s an old injury”.
“I’m used to it.“

If you want to use humor to deflect it, one way to do it is to tell an absurdly obvious lie, eg:

“I lost a fight with a penguin”.
“You know how they say not to look directly at the sun? They’re right.”
“Alien abduction.“

Absurdly obvious lies mean (and are at least sometimes understood to mean) “I don’t want to talk about this, and I’m giving you a way to drop the subject without having to state explicitly that you asked an inappropriately personal question.” There’s an affective piece of how to pull this off that I’m not sure how to describe. It requires a certain tone of voice and body language.

You can also say explicitly that you don’t like to talk about it.

Bodies are personal and you have no obligation to answer questions about yours
If you say that you don’t like to talk about it, it’s best to follow that up with an immediate subject change
(If you follow it with a pause, some people will reflexively try to fill the pause by asking why you don’t like to talk about it)
It might work best to keep your tone polite and friendly at first, and then get more firm if they push the issue

eg:

Them: So, how did your face get to be like that?
You: I don’t really like to talk about that. How about that local sports team we both like? Can you believe they lost to that team we all hate?

Other things that mean “I don’t want to talk about it”:

“That’s a long story.” (plus immediate subject change)
“That’s kind of private.” (plus immediate subject change)

None of these are foolproof, but they all work at least some of the time.

Short version: If you don’t want to talk about something, telling a boring truth, an absurd obvious lie, or saying you don’t want to talk about it are all sometimes effective methods.

Taking a troubleshooting approach

June 21, 2015June 21, 2021 Real Social Skills

Content note: This post is my answer to a scout leader who asked a question about my objection to describing things pejoratively as “attention seeking behavior”.

justmethesecond asked:

Hey, you made a recent post about attention seeking behaviors and how there are a lot of normal things that involve seeking attention.

But I have a question, as I staff at scouting and we have some kids that do demand personal attention when that is inconvenient or impossible for us to give (such as in a group activity, when you have ½ adults on 20 kids)

To elaborate a little bit further, the behavior things I am talking about are mostly kids that talk individually back at you when explaining things to a group (or in other ways, such as crying or trying to play (physical) games with you).

These types of behavior aren’t bad but they do sometimes limit our ability to explain things to a group of people.

And I was wondering how to deal with that?

realsocialskills said:

A couple of things:

There is no generalized way to deal with that. It depends on the situation.

Part of what you need to do is identify the problem more specifically:

Attention seeking isn’t the problem in itself
The problem is that the group activity isn’t working
Part of the problem *might* be that some kids need to learn what’s appropriate and what isn’t
Part of the problem *might* be that kids are being willfully disruptive and need to know that you won’t tolerate it
The problem might be something else entirely, and almost certainly has components that aren’t “that kid has a behavior problem” or “that kid is attention seeking”
There are a lot of possibilities, and I’ll get to some of them later in this post

Here’s why you shouldn’t call this “attention seeking behavior”:

“Seeking attention” is not an objective description of behavior; it’s a very vague theory about why someone might be doing something.
There is no such thing as generic “attention seeking behavior”
From your perspective, everything that annoys you by getting your attention when you don’t want to, can’t, or shouldn’t pay attention may feel the same
But it’s *not* all the same from the perspective of the kids who are annoying you
They’re doing what they’re doing for reasons, and the reasons are specific and individual.
(And they may or may not have anything at all to do with attention)
Eg: A child may be crying *because they’re upset*, and it might not be about you at all. They may in fact find the crying humiliating and be hoping that no one notices.
A child who is trying to play a game with you isn’t just generically trying to get attention. They’re trying to play a game. Which they may be doing for any number of reasons
A child who talks to you during the announcements might be trying to give input, ask a question, focus their attention, or any number of other things
Don’t collapse all of that into “attention seeking” as if it’s all the same.

Here are some troubleshooting tips:

Consider whether your expectations are age-appropriate:

Little children have a short attention span
They can’t sit and listen very long
They can’t wait very long for a turn to do something active
If you’re having problems with multiple kids, it’s very likely that you’re asking them to do something that they’re really too young for
If you’re asking kids to attend for longer than is reasonable for kids their age, *you’re* the one who is inappropriately seeking out attention when it’s not possible
(And just like you’re not doing it maliciously, kids who are disruptive are probably not doing it maliciously either)
It might be time to change how you do announcements and activities

Make sure the group knows your expectations:

It’s easy to assume that kids know the rules when they don’t
Things that are obvious to adults are not always obvious to children, especially young children
Kids are not born knowing how groups work
And different groups have different rules
Don’t assume that kids *know* that they’re not supposed to talk individually back at you when you’re addressing a group (there are actually environments where that’s allowed)
Don’t assume that kids *know* you’re not supposed to try to play side games or whatever
It can help to have a group conversation about rules
It’s particularly helpful if you get the kids’ input about the rules in that conversation
It’s likely that kids know things you don’t about what needs to be spelled out explicitly
And also things you don’t about what the rules need to be
Don’t do this as a punishment. Do this as a group conversation about rules. If it’s well into the year, you can say something like “So we realized that we forgot to set rules for the group. This week we’re going to start by setting the rules together.”
Many of the kids in your group will have done an exercise like this before; it’s a fairly common thing to do with kids
(Be careful though, don’t say things like “but you agreed to these rules!”. This isn’t really an agreement. This is you setting rules from a position of authority, and getting some input from kids about what the rules should be.

Redirect:

If you’re not saying in the moment that something is a problem, it’s important to start doing that
If you don’t object, some kids might be assuming you’re ok with it
Don’t be mean, but do speak up, eg:
“You can ask questions when I finish talking”
“I can’t play with you right now”.
It also helps if you can phrase it by telling them what you *do* want them to do, eg:
“Try and tag someone. I bet you can tag (specific kid).”.
If kids have trouble telling when it is and isn’t ok to talk, try having an object that someone holds when it’s their turn to talk.

Talk to the kids who are having trouble individually:

Talk to them about what’s going on (out of earshot of other kids)
Talk to them about why some of the things they’re doing are a problem
They might actually not know — no one is born knowing how to act in a group, and some kids need to have it explained explicitly
Even if you’ve had a group conversation about rules, it’s possible that they don’t get it
Or that they can’t follow the rules as they stand
It’s important to ask them what they think is going on
And if there’s a reason it’s not working for them
And if they have ideas about solving the problem
Kids don’t always know, but sometimes they do
And knowing that you care makes a difference

Parents also might be able to help you:

Parents (usually) know their kid better than you do
This is particularly true of elementary-aged kids
Most parents want to help their kids
Most parents have at least half a clue about what is helpful to their kids
Don’t use calling parents as a punishment
Do talk to parents when there’s a problem in your group and you don’t know what to do about it
(Be more cautious about this with older kids; teenagers have a developmental need for more privacy)
(Also be cautious about this if you suspect abuse. Talking to parents who are likely to be harshly punitive is not likely to make things better)
Say explicitly that this is not a punishment and that you’re asking for help
They will likely have helpful suggestions
(Not always; some parents are unreasonable. But a lot of parents are very helpful, if you listen to them).
Don’t assume parents are right; do listen to them. They often know things you don’t.

Ask for advice from a teacher:

Teachers spend all day working with groups of kids
Not all of them are good at it; but some of them are
Good teachers will know things you don’t about how to make activities and announcements work
If you know a teacher who you respect, ask them for advice
Ask these questions specifically:
“I’m having trouble with some kids in the scouting troop I’m running. Could I ask you for some advice?”
“Is this something that’s reasonable to ask of kids this age?”
“Do you have any advice about how to manage this problem in a positive way?”
“Do you know about something else that works well?”
Listen to what they say and consider why they’re saying it, but ultimately trust your own judgement. You are the one working with kids directly, and you’re the one who is ultimately responsible. Don’t do something that you think is wrong.

Google resources for teachers:

There are a *lot* of resources for teachers on the Internet
Most things that are relevant for teachers are also relevant for scout leaders
You can google activities for kids the age you work with, then consider which things on the lists are likely to work for kids you work with
Positive classroom management is also a good thing to google (particularly for the age you work with)
Not all teacher resources are good; seek out information, and use your own judgement about which advice to take

Consider the possibility that your environment is causing pain:

Scouting often takes place in physically uncomfortable outdoor environments
That may be intolerably painful for some of your kids
Are they being painfully bitten by bugs? If so, do they have bug spray? Are they using it? Is it working?
Are they getting sunburned? If so, maybe you need to change the procedure for making sure that all kids put on sunscreen.
Is the sun shining painfully into their faces?
Are they inhaling campfire smoke?
Are they sitting in a painful position?
Sitting cross-legged on the ground or floor is physically painful for some kids
(Likewise sitting on benches with no back support)
It might be that they’re trying to do things that will get them out of that position
If you suspect that this is a problem, try having kids sit in chairs and see what happens
Or try sitting around a table kids can lean on and see what happens
This is particularly likely to be the case for older kids or heavier kids
Positions often become intolerable as kids get bigger
It also might help to alternate between sitting activities and standing or moving activities in shorter intervals so that kids aren’t sitting as long

Are they hungry or thirsty?

Often when kids are disruptive, it’s because they’re hungry or thirsty
At certain ages where kids are growing rapidly, they’re hungry a *lot* of the time
Kids won’t necessarily realize that enough to ask
And they also may have been taught that asking is pointless because no one cares whether they are hungry or thirsty
Being proactive about this might help
Try making water easily available without kids having to ask for it (eg: by requiring them to carry water bottles)
If you’re not already doing a snack at the beginning of the meeting, try doing that
If you are already doing that, try making it something more substantial
Low calorie snacks suitable for adults who are trying to lose weight are *not* good snacks for the purpose of feeding hungry children
(Eg: celery sticks are not a good snack to get growing kids through a scout meeting; celery sticks with peanut butter might be. A handful of pretzels is not a good snack; cheese sticks might be.)
If you’re on a camping trip or something, you may need to feed the kids more often than you realize
If this is a problem, it’s probably *also* a problem for the kids who *aren’t* disruptive, so don’t just do this for the disruptive kids. Assume that all of the kids may be hungrier and thirstier than you realize

Don’t be mean:

If something feels mean, don’t do it
If you’d think it was mean if someone did it to you, don’t do it
If something is humiliating toward a kid, don’t do it
Don’t punish kids in front of other kids
It’s ok to say something like, “Not now” and redirect
It’s not ok to yell, or say something like “I’ve told you this over and over, why don’t you get it?”
(If you need to take a kid out of an activity and talk to them about it, have the conversation out of earshot of other kids)
Don’t have a big reward event and exclude some kids from it

Some kids need 1:1 support:

Some kids need a lot of help to do some things
If that’s the situation, the problem isn’t that they’re misbehaving
The problem is that they need more support than they’re getting
This may or may not be a problem you (or their parents) can solve
But it is something that should be on the table as a possibility for some kids
A caution about that: Sometimes people leap to the assumption that any kid they’re having trouble with needs a 1:1, and it’s usually not true.

Sometimes the solution is to change the activity.

No amount of clarifying rules and expectations will help if you’re asking a kid to do something they’re not capable of doing.
Or if you’re routinely asking them to do something that is extremely difficult and only barely possible for them
Or if you’re asking them to routinely do something they find actively distressing
If there are insurmountable barriers to a kid participating in an activity, then the activity probably needs to change
Some kids need to be actively doing something in order to pay attention
Some kids need attention in order to pay attention
A kid having these needs is not a behavior problem; it’s a support need

Thoughts on changing activities:

Some activities require a lot of turn-taking, passive listening, and waiting
Those are not great activities for kids who need a lot of feedback in order to know what to do
They’re also not great activities for kids who need to be actively participating in order to focus
If you have kids in your group who have that need, it is likely a good idea to switch to doing activities in which everyone is actively doing something most of the time
For instance:
Red Rover probably won’t work well with kids who have trouble with passive waiting
And a circle activity in which only one person at a time does something is likely to be even worse
Games in which everyone is actively playing, like tag or Simon Says, are likely to work much better
This is also true of group conversations:
Long conversations with a big group require a lot of passive listening. That’s a problem for kids who need to be active in order to focus
Having kids discuss things in small groups or with a partner might work better

Sometimes you can change an activity by creating a way for kids who’re having trouble a way to focus:

Eg: Kids who have trouble in groups might be able to focus if they take notes
Or if they have a fidget toy to fidget with
Or if they have a specific task (ie: if everyone is supposed to be preparing a campfire and they’re climbing on you, it might help to ask them to gather wood from a particular area)
A caution about this: Don’t use this as a reward or as a punishment.
Don’t assume any particular approach will work. Don’t single a kid out over their objections. (eg: If a kid doesn’t want to take notes or use a fidget toy, don’t make them just because someone on the internet says this helps some kids)
Sometimes minor modifications work; sometimes they don’t. When they don’t work, it’s time to try something else.

This isn’t an exhaustive list — there are a *lot* of things worth trying and thinking about. The important thing is to take a troubleshooting approach and to keep trying to identify and solve the actual problem.

Short version: Sometimes when you’re responsible for kids, they do stuff you don’t like. This is often treated generically as “attention seeking behavior”, but it shouldn’t be. Kids have much more diverse and complex motivations than that. Instead of calling it “attention seeking”, or ignoring them, adopt a troubleshooting approach to the problem. Taking a troubleshooting approach is much more likely to enable you to identify and solve the actual problem. Scroll up for some specific troubleshooting suggestions.

Relieving childcare pressure without watching kids

June 16, 2015June 21, 2021 Real Social Skills

chartreuse-chasmophilous asked

There’s a problem in my family: my cousin and his wife are in quite a tight spot (little kid, both work full-time, even overtime sometimes, not a lot of money), and receive little to no support from my cousin’s parents.

As my mum (his aunt) was always really close to him, we often help them instead, both with money and babysitting (esp during the holidays). I’d like to help them as well, but I’m rubbish with kids (she’s four and very hyperactive). Is there another way for me to support them?

realsocialskills said:

Probably.

I don’t know them, so it is hard for me to say what they need help with.

The best way to find out might be to ask them, possibly by saying something like: “I’m not comfortable watching children, but I’d really like to find other ways to support you. Is there another way I could be helpful?”

That said, asking an open-ended question might not make it possible for them to tell you what they did. Open ended questions don’t tell them much about what you are and aren’t ok with. If you don’t know what someone is likely to feel comfortable helping with, it can be really hard to ask for help.

So it might be better to offer something specific.

You may be able to help with childcare needs indirectly:

People who have young kids and no childcare have to take their kids with them to a lot of places
That makes a lot of errands take longer
It also makes them more draining for both the parent and child
Eg: Parents who have no childcare have to bring their kids to the grocery store
At best, this means that grocery shopping takes longer because they have to supervise their kid and shop at the same time
And they have to bring their kid even if their kid is too tired to tolerate it well
Then the kid is miserable, and the parent has to deal with caring for a miserable (and probably uncooperative) kid in a public place while judgmental strangers stare at them
And it’s likely that both parent and child will be upset even after the errand is over
And it can interfere with sleep and make the next day difficult as well
If you can do some of their grocery shopping for them, that can relieve childcare pressure without you having to watch any kids

Some other things that might help to relieve childcare pressure:

Picking up their mail
Picking up their prescriptions when they or their child is sick
Dropping off things that they need transported
Being at their house for the plumber/cable company/etc so that they don’t have to take off work (which means they have more time off available to deal with child-related things)
Household tasks that are difficult to accomplish with children who need close supervision (eg: mowing the lawn if they’ve got one)

When people keep asking why you don’t have kids

June 7, 2015June 21, 2021 Real Social Skills

A reader asked:

I’ve had a hysterectomy and I live in a region where it’s very odd (like, statistical outlier odd) for a woman not to have kids by my age.

So it’s fairly common for people to continue to harass me about why I don’t have kids and not take any of the polite attempts at diverting the subject as hints to leave me alone until I tell them the truth.

Then when I tell them the truth they get mad and say that it’s too much information. Any advice for dealing with this?

realsocialskills said:

It might help to be direct about saying it’s a personal question.

I’m not sure how your conversations are going. I’m getting the sense that they might be something like this:

Them: So, why don’t you have kids yet? When are you going to have them?
You: Nice weather we’re having. But it’s summer and so it will probably rain soon. Do you think it will cause flooding again?
Them: Oh, probably. It usually does. But what about kids? Are you seeing anybody? Fertility doesn’t last forever.
You: So, I have this great new recipe for a seven-layer congealed salad.
Them: Children are a blessing. Life really can’t be complete without them.
You: That may be true, but I had a hysterectomy, so it’s not happening. Now can we please talk about something else?
Them: Why would you tell me something like that?!

It might help to add a warning layer before you tell them the truth. One possible layer: Saying it’s personal and that you don’t want to talk about it, then an immediate subject change:

“That’s awfully personal. I don’t like to talk about this.”
“That’s private medical information.”

Another possible layer: Asking rhetorical questions that warn them that they might not actually want an answer. This can make it harder for them to blame you, and more likely that they’ll back off:

“Do you really want the gory medical details?”
“That’s a very personal question. Do you really want to ask that?”
“Are you sure you want an answer to that?”

Another possibility: Answering the question in a way that’s a bit less graphic but still gets the point across:

“It just hasn’t been in the cards.”
“I can’t have children.”
“I’m sterile.”
“It’s not medically possible.”

If you’re in the South, there are some nuances about how to make people feel bad about asking inappropriate questions that I don’t really understand. (Which is part of the reason I don’t live there anymore.) It’s mostly a matter of affect. I know that it involves inserting a certain kind of pause and icy body language that tells someone they’ve crossed a line, but I don’t know how to do it or describe it well. If anyone who is better at that wants to weigh in, that would be welcome.

Short version: If your attempts at subtly deflecting intrusive questions are failing, it can help to more explicitly say that the question is too personal and that you don’t want to answer it.

Finding things you can fix when things are really wrong

May 24, 2015June 21, 2021 Real Social Skills

ischemgeek asked:

Advice on expressing sympathy and lending emotional support to a family member whose child may be facing a serious illness? Both for the “dunno for sure” phase and for the “know for sure either way” phase. Comforting is not my strong suit and halp plz because this can’t be fixed so soothing is only way to be helpful.

realsocialskills said:

This is the second part of my answer to this question. The first part was about emotional support. This part is about practical support.

I think that there are probably some things you can fix in this situation.

The problem of possible illness can’t be fixed. Secondary problems surrounding the situation *can* be fixed.

When a child is facing a serious illness, all kinds of practical things get complicated. Diagnosing and treating illness involves a lot of medical appointments, tests, insurance wrangling, and other complications. And it happens with no warning, when people are already busy with other things. They’re probably both physically and emotionally exhausted. They probably could use a lot of help.

Some possible problems that might be solveable:

Childcare:

If you live nearby and are comfortable babysitting, offering to watch their kids some could be really helpful
If they have other kids, someone has to watch them while they’re at medical appointments with the possibly-sick kid
Suddenly needing more childcare than you expected to need is a logistical nightmare, and it is very likely that they don’t have as much help as they need
Even if they only have the one child, more childcare would probably be helpful
The obligations of life don’t go away when a child gets sick, and there are likely many things they’re behind on that are hard to catch up on while caring for a child

Helping kids with homework:

If their kids go to school, they likely have a lot of weekly homework that they need adult support with
This can get very complicated if parents are suddenly very busy and emotionally exhausted
Even if you don’t live nearby, if you can be available for some homework help over email or Skype, that could take a *lot* of pressure off of the family.

Communicating and running interference:

When a kid gets sick, a lot of people want constant updates
This is generally exhausting and burdensome to the kid and the parents
Sometimes it helps to have a point person for updates and boundary-assertion
Or someone to run a CaringBridge page so they don’t have to
I don’t know if they’d want this or if you’d want to do this; some people find this helpful but I don’t know what they want or what your relationship with them is like

Helping them with the insurance company and other bureaucracy:

If they are in the US, an insurance company is probably being awful to them and refusing to pay for things
Or making things needlessly complicated and confusing
They also might need to apply for government or charitable assistance at some point
Which is hard to do when you’re overwhelmed and exhausted and have never done so before
If you’re good at navigating that kind of thing, you might be able to help them
Or you might be able to do research and find out things that can help them
Again, I don’t know if they’d want this kind of support from you or not. Some people do; some don’t

Money:

Illness is expensive no matter where you live, even under ideal circumstances
And unexpected major expenses make life really hard
If you are in a position to help them financially, it would probably make some things significantly easier for them
Money can’t fix the biggest problem, but it can go a long way towards fixing the secondary problems

Other general life logistics: There are a lot of things that get hard when there’s a crisis, that they might welcome help with:

Keeping their house clean
Cooking some food (or ordering them the occasional pizza)
Mowing the lawn if they have one
Getting groceries and supplies
Picking up prescriptions
Getting kids to and from school
Keeping their computers and network in good working order
Making sure bills get paid on time

These are the things I can think of offhand. I don’t know which, if any, it makes sense for you to do. I don’t know the extent to which your relationship with them makes help appropriate. I think it is likely that there are things that you could do to be materially helpful — and also important to realize that you don’t have to do all of them (and probably shouldn’t).

Short version: When someone’s facing a major life problem that you can’t solve, they’re generally also facing secondary problems that it’s possible to help them with. Scroll up for some specific suggestions.

Maintaining privacy when people ask about a memorial object

May 19, 2015June 10, 2021 Real Social Skills

Anonymous said to realsocialskills:

I have a rather specific social problem I was hoping you might help me with. One of my best friends committed suicide very recently, and I have a necklace with his name on it that I wear to remember him. Normally I wear it with the blank side facing out, but it does flip around, & people (who didn’t know him) have asked about it. I don’t want to outright lie, but this isn’t something a stranger needs to know.

Additional complication: this is still really raw, so sometimes the question hits wrong and I become visibly upset, which just makes the person more curious. How can I brush these well-intended remarks off as politely and quickly as I can, making it clear that I don’t want to talk about it?

realsocialskills said:

I wonder if it would work for you to say that it’s in memory of a friend without talking about the suicide?

Like, along these lines:

Them: That’s not your name, is it? Who is that?
You: Actually, it’s in memory of a close friend who died recently.

It might help to be explicit about how you want them to react. Most people are uncomfortable talking about death. Some people will be very worried about saying the wrong thing and will want to take cues from you.

If you want them to drop it, changing the subject helps. One way to change the subject is to talk about the reason you’re interacting with that person to begin with.

Eg: Say you’re at a conference.

Them: What does your necklace mean?
You: It’s kind of personal. It’s in memory of a friend who died recently. I’m trying to stay busy. I’m excited to be at this conference. What brings you here?

If that’s too much sharing, maybe you could say something like more vague like: “It’s a friendship necklace”, or “It’s to remember someone”, or “I’ve had that for a while”, “It’s in honor of someone”, and then follow it with an immediate subject change.

This sometimes takes a couple of repetitions of the subject change. Some people think that they’re supposed to find ways of getting you to talk about it, and some people are just nosey. If people are particularly persistent, you might need to say very bluntly that you don’t want to talk about it. (Some people might get annoyed at having their persistence rebuffed. If that happens, that’s their fault, not yours.)

Alternatively, what about making the necklace less visible? For instance, by wearing it under your clothes, or by putting your friend’s name in a locket instead of on the outside of a pendant? (I’m not assuming that this is a good idea — it may well not be; symbolism is complicated).