“caregiver burnout”

"Caregiver burnout" caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member

“Caregiver burnout” caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member

I dislike the term “caregiver burnout.”  To me, it carries a very negative and connotation about the person being cared for.  It also seems to imply some sort of culpability on the person under care which makes me super uncomfortable in a way that I cannot articulate.

It makes me so sad to see people using this term to describe themselves and all that it implies about their Autistic children.  And families.  It makes me sad that these stories of hardship dominate the conversations about Autism because it gives the impression that there is no alternative to this way of life–to this emotional state of being when you’ve got an Autistic family member.

The media isn’t interested in shining a light on those families, families like mine, who have found a way to thrive and be happy.  Content isn’t sexy.  Happy isn’t sexy. Tragedy and misery are.

The voices of happy families get drowned out by the voices of those in the sexy depths of despair.  As such, a real disservice is done to Autistic people and their families because they don’t get to see that happiness is very possibly well within reach.

Some people say that I’m not “real.”  That I’m not “honest.”  That I try to hide the realities of having an Autistic child.  While I try to be loyal to my child’s expectation of privacy and certainly don’t share every challenge we face as a family, I am 100% truthful when I say that we are, in general, pretty darn happy.  So I feel that I can share, with some confidence, some of the things that I believe help us maintain this state of well being.

Even if I am shouting into a void.  Or into a crowd of people that aren’t ready/willing to open the door to a different way of doing things.  I say to those parents on the edge, those crumbling and broken, “What do you have to lose by trying?”

Therapy/Intervention:
You don’t have to do everything that the experts recommend or make claims about “working.”  I know that parents need to come to terms with a tremendous amount of shaming that comes with turning away from accepted Autism “treatment” protocols.

We stopped doing therapy outside of school hours a long time ago and have never regretted that decision.  Evie gets daily speech and language services at school, she participates in physical education–both general ed, and adaptive.

Outside of school?  She swims almost every day.  She enjoys both the physical and recreational benefits of swimming.

As a family we enjoy the obvious benefits of not handing over any hope of disposable income to those experts that are standing with hands out to take it.  We enjoy parenting a child that is not exhausted and overstimulated by 20+ hours of intensive intervention a week.  We enjoy having an activity that we can all do together regardless of our individual abilities.

Find some physical activity that your child enjoys.  Don’t prioritize interventions and therapies over it.
Speak to Autistic adults.  Read what they write.  Listen to what they say.

Down time:
Don’t underestimate the importance of down time.  For every family member.  Maybe especially your Autistic family member given the fact that becoming overstimulated doesn’t usually lead to good things for Autistic people.

Down time is self directed.  Meaning there aren’t any expectations of what happens during down time (other than safety).  What constitutes down time for you, does not necessarily constitute down time for your child.

Let your child choose (within reason) how he/she will spend his down time.  Schedule down time every day.

Variety is the spice of life:
Not for everyone.  It is possible to be perfectly happy going for long stretches of time (forever?) eating the same things.  Doing the same things.  This isn’t to say that opportunities to try new things shouldn’t be offered and gently encouraged.  But take the pressure off your child (off yourself) to live a varied existence.

My child enjoys: pears, blueberries, corn, cheese, yogurt, apple sauce, apples, nut butters, pasta, and peas consistently.  When I combine cheese and pasta or cheese and pretty much anything, I am able to include less desirable foods–like spinach, chicken, ground beef, etc.  I’ve also found that she enjoys kelp noodles and quinoa pasta as much as the less healthy conventional alternative.

As long as your child’s nutritional needs are being met, don’t worry about variety.  Don’t worry about spoiling your child by preparing special meals for him/her.  Save yourself time and energy by cooking in bulk so that you have preferred foods ready to go.

Don’t be an “Autism Parent”:
Be a parent.  Parent your child.  Don’t parent a perceived set of deficits.  Each child has an individual set of needs.  The fact that other children don’t have the same needs does not mean that your child doesn’t have them.

I treat most of my child’s aversions like allergies.  I wouldn’t try to make a person with nut allergies less or not allergic to nuts by forcing nuts upon him.  No, it is not easy living in a world full of nuts with a nut allergy.  But forcing nuts on a person who is allergic to them can have devastating consequences.

My child doesn’t like having her head touched.  I don’t touch her head unless I have to for her health and safety.  I don’t expose her to sounds that she cannot tolerate.  I certainly don’t seek them out in the name of therapy.

Trust your child to say what is and isn’t okay for his/her body.

Make communication accessible:
Don’t value any one form of communication over another.  For a long time, I was so focused on Evelyn speaking that I didn’t give her access to other forms of communication.  In fact, I think I can even say I withheld it.  This is probably the worst mistake I have ever made as a parent.

Give your child every tool possible to communicate.  Remember that the ability to speak may not be constant.

Hearing the words, “I love you,” in any form is not nearly as important as hearing, “xyz hurts” or “I need xyz.”

Sleep matters:
Don’t underestimate the importance of sleep for anyone.  Sleep in our house is hard won for both Evie and me.  We’ve experimented with all sorts of strategies to achieve it. I resisted medication for Evelyn for a long time.  But when she doesn’t sleep, she is even more prone to seizures and other forms of injuries.  After trying just about every alternative to medication under the sun, both of use medication as a sleep aid.

I’m not pushing medication–especially for children.  I’m pushing the benefits of sleep for everyone.  Achieving sleep might mean stepping outside of your comfort zone.

I tried and tried to force a typical sleeping schedule on Evelyn.  What I’ve discovered is that, she sleeps best early in the night.  If she falls asleep between 6:30 and 7:30 PM, she will get up in the morning between 4:00 and 6:00.  Later bedtimes don’t cause her to rise later and she functions best on 10-12 hours of sleep.  As a night owl, I am still adjusting my sleeping rhythms to hers because my lack of sleep doesn’t seem to influence her sleeping.  But when she doesn’t sleep, I don’t either.

Seek medical advice about sleeping.  One of the things that likely kept Evelyn “up” during the first several years of her life is that she was an undiagnosed Epileptic.  Don’t just assume your kid is a “bad sleeper.”

YOU need sleep too.  Move heaven and earth to get it.

Ways we fight sleeplessness in our family:   experiment with bed linens, experiment with sleep time lighting, experiment with white noise, experiment with sleeping location, experiment with sleeping times, ban on electronics in bedrooms, medication, etc.

Have a strictly flexible routine:
That makes no sense.  But I don’t know what other way to describe it.  Routines are king in our house.  We have routines for everything–even going off routine like when we travel.

Our needs to know what is coming.  Or she gets anxious.

When something comes out of nowhere and catches us off guard?  Our routine is to indulge and sympathize.  In our case, we don’t restrict screen time and loosen up our nutrition standards–see: Evie consumes an entire big bag of smartfood in one day while watching an endless stream of Sesame Street.

Have a routine.  But when you go off routine, expect your child to need additional supports and accommodations.  

Find a small and private support network:
Most people need to vent from time to time.  Choose to do so in a way that does not violate your child and/or his privacy.

Have a question about parenting?  Ask it.  If it is about private matters, ask it privately or anonymously.

You don’t need to do it alone.  But be respectful of your child and skip making your child’s life a public exhibit.

Go offline:
Seriously.  When you’re feeling like you can’t hack it.  Like you can’t give your children the care they deserve.  GET.OFF.THE.WEB.  Actually well before that.  Shutting out the noise of the entire web should be one of your first steps.

Don’t over estimate your importance to the whole wide internet.  Outside of your small and private support network, we will be just fine without you.  I know you think people can’t live without your “real”, “raw”, and “honest” blog/facebook  posts but I promise you, that parents of Autistic kids will be fine without your violin in the orchestra.

All snark aside, I spent the entire month of September completely offline (with the exception of occasionally crushing candy quietly in a dark corner of the internet).  Actually, I pretty much spent the entire summer offline.  I cannot overstate the importance of these breaks to me and my family–I highly recommend them.

Ignore Facebook, your blog, other people’s blogs, Twitter, Pinterest, and whatever grinds you down.

Love the child you have:
“I love my child BUT AUTISM IS HARD.”  No.  The “but” and everything that comes after it negates the “I love my child.”

Don’t think your child doesn’t pick up on that “but.”

Your kid is awesome.  And if you’re still using the “but” after I love my child?  You’re missing out on a world of wonderful and happy.  Don’t waste another moment on the “but.”

Connect in ways that are meaningful to your child.  Even if it doesn’t come naturally at first to you.  Teach your child that he/she can trust you by being trustworthy and loyal–even when you think he/she isn’t looking.

Change the way you think.  I love my child but Autism is hard.  I love my child; therefore, I am going to parent according to my child’s needs.

Change the world.  Not your child.
Like me, I know many parents of Autistic kids are worried sick over what will become of their children when they can no longer be the primary support system.

The truth is that Autistic people will never be safe in a world that demands that they change.  In a world that doesn’t afford them the same standards of decency and humanity as those that aren’t disabled.

As parents, know that with every public statement you make about your child, you are telling the world what to believe about Autistic people.  You are telling the world how to treat your child and every other Autistic person now and in the future.

Spend your energy fighting against Autistic bigotry, not against the nature of your child.

Behavior Management:
Every time I think about how most Autistic kids are treated?  I feel a little panicky.

Imagine spending your days being prompted at every moment.  That there is a constant demand that you keep still.  That you suppress your need to move in the slightest.  That assumptions are made about the function of everything you do or say.  That you have almost zero moments in your day to zone out.  That someone is almost always in your face telling you what you must do.

Say nothing of being overstimulated by other sensory input almost always.  That people believe you to be simultaneously incapable and not working to your potential out of stubborn refusal.  That people do not respect your autonomy and that they think nothing of constantly hand over handing your every movement.

Your communication is shut down, not honored, ignored, written off as undesirable behavior, withheld, or otherwise not available.  What are you left with?

I’d protect myself physically too.  I know it.

Try backing off.  You won’t believe the difference this can make.  Ask me about how the school labeled Evie “a different child” when the ABA stopped entirely.  In other words, they started to see the only happy child her family ever knew.

What do you do to maintain familial happiness?

32 thoughts on ““caregiver burnout”

  1. This is the most perfect thing I have ever read. I’ve wanted for a long time to put this into words. Every parent should read this. Thank you!

  2. Hi… My son is 3 years and a half old… he was diagnosed last February 5th as severely autistic. I’m still trying to understand it all because there are so many different school of thoughts out there. Not many schools of thought would make my son happy. I discovered yesterday about “Unstranged Mind” and she told me you let your girl play with tablets. My son loves playing games on his tablets, but people think it is bad for him… that he would “catch” social skills and language like a virus if he is exposed to “people”. Can you help me justify why I think my son could play with his tablet and be happy and that it would not harm his development? (my email is michelleeffting@gmail.com)

    • Hi Michelle,
      Can you say more about who the “people” are and what they are saying is bad? Also what “social skills” do they claim he is lacking? Is he non-speaking some of the time? All of the time? Does he use his tablet for communication?

    • File the tablet use under “downtime”. My son uses his ipad to decompress. Does he stim on (with?) it? Yep. I don’t care. It’s part of what he needs to stay regulated. He doesn’t get to do it for unlimited hours every day, but probably more than the experts would recommend.

    • Michelle, I hope you don’t mind me replying. My son (nearly seven) has always been visually inclined. TV, tablets, DVDs and now computers. It’s how he learns best. It’s also a good way for him to decompress (and he’s very good at recognising what his sensory needs are at any given moment, whether he needs to zone out – or zone in, as is really the case with a screen as it allows someone to focus on a small two dimensional space rather than a full three dimensional world, or whether he needs to run, or to have lots of deep pressure and procioreceptive activity, so we let ourselves be guided by him). And there’s certainly a good case for allowing lots of downtime.

      We’ve had a few people suggest that we limit his time on devices, because it’s not beneficial (even if they agree with the need for downtime, they don’t see any other benefit to it). I disagree. Strongly. To give you an idea, thanks to watching endless DVDs and movies, and reinforcing it with some DVD and computer phonics programs he was interested in, our son pretty much taught himself to read (that’s not to say his reading wasn’t reinforced in school). First by watching alphabet based DVDs, then by playing phonics programs and watching DVDs on the computer, then applying that to watching the credits (or subtitles) on movies. He’s always been fascinated by graphic imagery / symbology (he’d choose certain movies because they had some symbolic link; all produced by Dreamworks, or Pixar, for example), then he’d recreate the logo with toys, then pencils (moving on to recreating the alphabet with pencils as sticks), then words and sentences with pencils and alphabet blocks. One of his early intervention teachers tried to discourage us from allowing him to ‘stim’ with pencils (her definition was that he was not using them for their intended purpose), we asked if she’d noticed what he was actually doing with them. He was learning independently, and she thought it a good idea to STOP him? Most of the games he played on the iPad were educational to some extent. Then he discovered Minecraft. He simultaneously discovered Google (at around this point we discovered that he could not only read and write/type, but transcribe whole sentences that he’d never seen written, only heard on the assistive audiotrack of a movie), started finding minecraft tutes, taught himself to play, then within a few weeks was building gigantic structures, including a recreation of the Pixar logo with a roller coaster running through it. He then found a photoshop tutorial for recreating the Google logo, I set him up with my old computer and a copy of photoshop, and away he went. Less than two months after the first time he opened photoshop, he googles tutes (he has a favourite channel), and attempts to copy what he has seen on the tutorial, usually with quite a bit of success. I mentioned that he is not yet seven, right, and he’s picking up a professional, industry standard program? His school teacher once asked if he could read a book aloud to the class – you know, typical grade one ‘spot sat on the mat’ type thing, he started reading out the publishing info page (you know, the legal jargon with lots of really big words). Or he’ll happily tell you, courtesy of the NASA channel, what Jupiter and Saturn’s major moons are. This is a kid that is mostly echolalic, who has a full time aide in class, who needs a lot of help with every day to day tasks, and that has embraced technology as a means of learning and expressing himself.

      Soooo…. on balance, I’d say that technology is what you make of it, and there’s certainly a case that allowing him to explore his interests will lead to other areas of development down the track.

  3. I love this blog post. It echoes my family and what we believe in so in many ways. My son and daughter are equally awesome. My son happens to be on the autism spectrum with significant learning difficulties. Not to say that doesn’t bring challenges but we work with that as a family in a way that suits ALL of us and life is pretty good a lot of the time. I’d like to share it on my work facebook page if that’s okay (I work for an Autism Support Charity).

  4. Thank you. This is beautifully written and I can relate to so much of it. I am guilty of the, ‘I love my children BUT…’ concept. (Although I think the BUT relates to parenting in general for me and isn’t always autism-specific.) You make some wonderful points. The best one for me is the idea that people don’t hear the happy stories. Families often have a rough time initially but then work it all out eventually and people rarely hear part two. Well done!

  5. Best post I’ve ever seen about advice for parents of ALL children. You and your family are an inspiration and need to be heard.

  6. thank you. this has affirmed that how we’re doing things with my daughter isn’t the wrong way to do things. we follow her lead when it comes to a lot of stuff and do our best to make her feel comfortable and safe. to me that’s far more important then teaching her to fit in.

  7. I think parenting is hard and parenting any child that doesn’t fit a tightly prescribed norm is even harder for many reasons. I also think that parents in general have a lot of pressure to never ever feel ambivalent about their children. This is true no matter who your children are. This is not a reasonable pressure to put on anyone. I think you are seeing those constructions backwards…a parent says “I love them but…” when that parent wants to say something hard, when they want to talk about that ambivalence…the second part doesn’t negate the first part, they are saying the first part to try to soften the second part, that uncomfortable truth of ambivalence. When you have a child though that so much of the world assumes is unlovable, that ambivalence is given too much weight, and often allowed to go unchecked even when it dips into blame of the child.

    I love my kids, and parenting is hard, autism whether you are autistic or your children are is sometimes hard (and sometimes easy). Parenting when discrimination and bigotry is involved is very hard. Sometimes I have moments where I can’t meet the challenges with happiness, sometimes I am ambivalent, it’s not my kids fault when I am feeling that way, but feeling that way doesn’t lessen my love for them. I don’t think my kids would suffer from reading that I thought parenting them was challenging. I certainly didn’t suffer from finding out my parents found parenting me challenging, in fact it was kind of a relief, it explained a lot of difficult memories.

    I think kids suffer when their parents refuse to admit their ambivalence and blame their feelings on their child. When they feel ambivalence is wrong and if they are feeling it, there must be someone making them feel that way and too often the kids take the blame. I think horrible treatment of kids comes from that source and not the ambivalence itself. I would agree though that “I love them, and….” Is a better construction, because really the ambivalence and the love are separate things, not conditional and there is no reason to need to soften the fact that a loving parent can have ambivalent moments. I think we need to check that the parent isn’t blaming the child for that ambivalent feeling, but making parents feel guilty for having those ambivalent moments in the first place is counter productive.

    • ALL parenting is hard. Parenting a disabled child has a unique set of challenges. Of course it does. The point that I think many continue to deliberately miss is that the time and place for discussions of those feelings that directly relate to say your child’s behavior should be discussed in private. Turning intimate details of your child’s life into a public exhibit is hurtful.

  8. “I love my child BUT AUTISM IS HARD.” No. The “but” and everything that comes after it negates the “I love my child.”

    Wow, that’s not only horribly inaccurate, (and judgy) but with that one line, you very well may have just sent a parent dealing with something horribly diffuclt over the edge. I hope you realize that you may be responsible, however inadvertantly, for someone feeling really shitty about themselves… or worse. THAT is what is truly sad. Words, like actions, have consequences. You need to rethink giving other folks advice because if you stand by that quote, you are not in any position to be giving it.

    • no. that line is a very accurate explanation of how the “child” will hear that statement. like you said, words have consequences.

      “I love my child but Autism is hard.”/“Autism is hard but I love my child.” can you hear the difference? the first version will be heard as “yes, yes, I love them, of course I do, but my life is miserable because they’re in it”, the second one is more like “yeah, this stuff is hard, but I love them and that makes the difficult bits worth it”.

      just in case it’s too close to home thinking about Autistic people directly, let’s say the new neighbours are coming to dinner. one of them has a nut allergy, and you didn’t read the label on the garlic bread too closely. after the panicked hospital trip, you might 1) learn to read food labels more carefully next time or 2) not cook for people with dietary restrictions. you’d also probably apologise. you certainly wouldn’t blame the neighbours for ruining your evening, or call them ungrateful for not appreciating how much trouble you went to. you didn’t mean to cause hurt, so you’re sorry you did and you’ll try not to in the future.

      how you mean the words in an abstract sense inside your head is irrelevant. if you’re told that the way you’ve said something hurts someone you care about you find a way to express yourself more clearly. unfortunately that’s too much effort for most “autism moms”, so they start shouting about how inconvenient Autistic people’s hurt is, how we’ve “misunderstood”, how they feel attacked being asked not to say something that we know would crush their child’s spirit (because we remember the feeling). the worst part? we BELIEVE you. if we thought you meant what we heard when you said “I love my child BUT AUTISM IS HARD.” we wouldn’t bother, because then you wouldn’t care about your child.

    • If you’d like continue to misconstrue my words by picking and choosing the parts that fit your (collective) narrative about me, let me suggest that you go use one of the many other platforms available to do so.

      You’ve obviously come here to stir the pot–not engage in productive discourse. I’m not interested in doing that in my private space. Not with you or any other member of your tribe who has made false claims about things that I “tweeted” after tweeting out my phone number (during a period when I was completely offline), childishly labeled me “bitchface” and a “raging psychopath.” Oh and compared my blog name–which represents my love for my children– to pornography? And more appallingly repeatedly abused and bullied disabled adults.

      Your collective behavior is abhorrent and I’m not going to give you a platform, however small, to do so. I’m not interested in turning my blog into another playground for mean girls. You’re not welcome here. None of you.

    • You do realize that the phrase “I love you, BUT…” is one of the most hurtful phrases ever? Try saying that to your significant other, best friend, child. I’m sure they’ll feel the love (sarcasm). BUT erases what came before.

      “I love my child AND autism is hard”, means something completely different. One Simple Word. There’s a BIG difference between the two. Since you have missed that completely, your “judgy-ness” seems pretty ironic, considering you wrote “Words, like actions, have consequences”. Yes. They do. That’s the entire point.

      • Exactly Patricia. Parental love should be unconditional. “But” is conditional. “But” is heartbreaking for the parent and especially the child.

        I don’t object, actually, to being judged. I judge and am judged. As Kassiane would say, “Judging is evolutionarily advantageous.”

      • Patricia, I heard “I love you but…..” all the time growing up. You are absolutely right. It made me hate who I was because the whole, complete person I was born to be was never good enough…..and 38 years later, I still am trying to rebuild my self esteem. No child should ever be raised with conditional love. It is devastating.

    • Irony; Jeni is one of the Kelli Stapleton fan club, martyr mommies, Strawcowards, whatever the fuck they are this week. So, Jeni, when will you and your BFFs take responsibility for how YOUR actions enabled Kelli right off the edge of the murder your Autistic kid cliff. Keep throwing the word hate around your kids. Go ahead and pretend it doesn’t hurt them. Just like Kelli. You know the consequences.

  9. Pingback: Caregiver burnout | lovenlearning

  10. Pingback: What Does Helpful vs. Harmful Therapy Look Like? | Unstrange Mind

  11. Reblogged this on End Autism Stigma and commented:
    This blog post by Love Explosions covers an important concept of parenting that is not unique to parenting autistic children and it does so brilliantly. Given that I have not covered the topic of self-care anywhere in my blog, I thought I should share it.

  12. Love this! Completely agree, and think we all need to take a deep breath and not make these kids worse by putting too much pressure on them to normalize and be on the same path as their typical same-aged peers. We also swim! I ultimately eliminated traditional therapies for my daughter because they were expensive, exhausting, isolating and I didn’t see her benefitting from them as much as much as more organic, fun, family activities. I saw one video of ABA and said, “NO WAY am I doing that with my child.”

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