How to give more of yourself when the bank is empty.
February 29, 2016 3:17 PM   Subscribe

I'm so spent. I have a brilliant 10-y-o kiddo who was diagnosed as being on the spectrum late last school year. Between handling various behavioral blips at school, social challenges, and various doctor/therapy appointments, I have nothing left for me.

Before she was diagnosed, I thought she was just like her dad: brilliant and rigid. Total engineer personality. Now we have a label, which is a good thing. I have access to services in the school system and insurance has finally started ponying up a bit towards things that can help her. (Trust me, there's still a lot that we have to patch together ourselves.)

For example, in her advanced math class Friday, there was a sub. Teacher had left worksheets for the class to work on. Child felt that this was just repetitive crap work, flipped her desk over (!), and stormed out of the room. We have a Behavioral Improvement Plan in place as part of her IEP, so things were dealt with. However, when I got the huge long stressful email detailing the event, I was crushed.

I can't fix this for her, and OT/talk therapy/etc. isn't really taking effect.

Husband travels about 25% of the time for work. He is employed by his dream company in a sales geek position, so that part is what it is. When he's here, he helps as much as he can. However, he doesn't know what made him stop acting out as a kid beyond turning into a teenager who realized he couldn't keep doing this.

I love this child desperately, but there are times I just can't help but cry. I've started seeing a psychiatrist to help with the anxiety of this situation, but I feel like a failure of a mother. (Having two "twice exceptional" kids definitely makes me feel like a weirdo in this Stepfordian suburb I live in.)

Any advice on self care? Mantras? Drinking isn't a great option for me because of my migraine meds. :/
posted by heathrowga to Human Relations (29 answers total) 10 users marked this as a favorite
Husband travels about 25% of the time for work. He is employed by his dream company in a sales geek position, so that part is what it is.

Does he know, really, how you're feeling? Is his job worth more than that? Is there really no other option that would let him be at home 100% of the time? It's great he's happy, but if the rest of you really need his help...
posted by penguin pie at 3:33 PM on February 29, 2016 [10 favorites]

Best answer: Find other parents like you. See if you can trade off baby sitting with each other for date nights.'s good to have someone with whom you can compare notes.

As the daughter of a behavioral therapist, try positive reinforcement. What treats would motivate your kids? We ran on M&Ms, but there's other currency. Screen time, money, stickers.

But a support network, first and foremost.

Also know, if your kid has an IEP, all teachers, subs included, should be briefed. It's not your fault, there's no shame. It just is what it is
posted by Ruthless Bunny at 3:45 PM on February 29, 2016 [7 favorites]

I'm calling BS on the "It is what it is." Your husband needs to find a way to get off the road. Dream job or not, he has a family that needs him there. He doesn't get to bail out for overnight trips until your situation is stabilized. The idea that Dad has his job and Mom keeps things together at home isn't serving you or you child.

Who else do you have in your support network? You need to call in the reinforcements - family, friends, support groups for parents, church - you need more people in the network.
posted by 26.2 at 4:00 PM on February 29, 2016 [9 favorites]

Best answer: Nthing you need a support network. Find parents who have kids of similar age with behavioral issues. Get coffee or lunch with them when husband is home. Take yourself to the movies when husband is home (or whatever you'd enjoy in a few hours). Consider a new hobby for you! You need at least a couple of these breaks a week when hubby is home. You have needs and you have to fill them!
posted by Kalmya at 4:17 PM on February 29, 2016 [2 favorites]

Best answer: Could we have more details? Is the incident described typical/frequent or an outlier?

To be honest my perspective is that your real problem is being ignored so far. Your feeling of being a "failure" of a mom when you are clearly doing everything possible to make your kid develop well, your "stepfordian" neighborhood.

To be frank, if your child turning a desk over because of frustration with a boring assignment is amongst the worst of it...sounds like you are making mountains out of molehills. Kids smoke,drink,fight, and get pregnant in middle school. She will grow out of it. Or not. But why worry about it? You can just do your best, leave the rest up to fate and fuck what everyone else thinks. To be honest it sounds like you just have a smart child that is not suited to the typical public school BS, which is something a lot of people deal with. Is alternative schooling possible? How about Stanford's online middle/high school?

In my opinion, the key is give yourself some credit!. You're doing amazing, giving your exceptional child the support you are. That's all you can do. You do not beat, molest, or pimp out your child. You do not shoot up heoin and neglect your child. You provide a stable, loving home and professional help for your child, professional help! Not many children or adults for that matter get access to that!

Keep calm and carry on.
posted by hypercomplexsimplicity at 4:27 PM on February 29, 2016 [11 favorites]

However, he doesn't know what made him stop acting out as a kid beyond turning into a teenager who realized he couldn't keep doing this.

I don't think this is a fair comparison to make. Your child has a diagnosed illness. Your husband does not.

I agree with others above that 25% is too long for your spouse to be gone. He should start looking for somewhere else to work while your child needs him home, or he should look into taking FMLA until that happens.
posted by roomthreeseventeen at 4:28 PM on February 29, 2016

Response by poster: More info (which I should have squeezed into my long question!):
1) When he's not traveling, he works from home. That gives me A LOT of breathing room. He does empirically know how I'm feeling, but he has a better ability to wall off the emotions in order to focus on the logical "get stuff done" aspects of life.

2) I have started connecting into support groups, such as a special needs parenting group local to my area. I'm also on a ton of online communities geared towards parents of HFA kids.

3) His side of the family is pretty bootstrap-y, except for one sibling who also has a kid on the spectrum. We talk a lot, but her kid's version is different than my kid's version. My family knows, but they're very "Oh, wow. That sucks." No local family that's dependable.

4) We're atheists/agnostics in a baptist state. Atlanta (especially her suburbs) has a decidedly religious tint. I do often wonder how/what we're missing by not being involved in churches, but our effective religion is science and art.

5) I am a very involved mom (leading a GS troop for older daughter, PTA position at both schools, etc.). A few months ago, I realized that I needed to give up some of this extra stuff that supports Other People to focus on me. It's been hard to disentangle. All I am keeping on is the GS troop, because I've been with them 7 years and I like how it helps me engage with other kids.

6) Daughter isn't in crisis, AFAIK. She's just having more aspects of her condition rearing up as the social demands of life increase with age. The school isn't cussing me out or the like - it's just that I can't get my arms around this feeling of "I can/should be able to fix it." It's not logical, but it's my deepest wish.

7)To the person who said I'm doing an awesome job, thank you. Maybe I need more atta-girls.

8) To answer another question, husband has often stated he was exactly like her, and his parents refused testing for him as a child. They felt it wouldn't help, and he could just be spanked out of it. (Not our philosophy.)
posted by heathrowga at 4:33 PM on February 29, 2016 [1 favorite]

Response by poster: Desk flipping is uncommon- 1x a week. Verbal outbursts are several x per week.
posted by heathrowga at 4:44 PM on February 29, 2016

Best answer: In my extremely similar experience - the only way out of this is to 'spend less' (emotional and physical energy) on other things. I tried to 'put more in the bank' with self-care but the occasional massage can only do so much. I cut out A LOT. Not just the kind of social obligation like Girl Scouts, but putting less effort into cleaning, cooking, gardening, etc. Basically everything I could ignore or throw money at, I did. Please don't be hard on yourself - this is an extremely stressful situation and it sounds like you're hitting all the right paces. Acknowledge that this is an extremely stressful time and if you can let things slide, let them slide.
posted by bq at 4:46 PM on February 29, 2016 [13 favorites]

Best answer: I feel you; this was my life for a long time. (In my son's case, things got dramatically better in middle school... he was maturing, the school and classes were a better fit for him because they had clearer expectations and were more challenging, and his peers matured to the point where they could do things that he found interesting, and having a tiny bit of a social life took some pressure off his dad and me. You can't count on that, but know that improvement may be in sight.)

I did better when I had a life outside of my kids; friends I saw kid-free and without our focus being discussing our kids. (Support groups would not have been helpful for me because they would have been taking my "free" time to continue to focus on the hardest part of my life. I know they work great for some people, but not for me.) It was also easier when we relaxed our serious restrictions on screen time; getting some mental space from a demanding kid while he played Minecraft was a lifesaver and I only wish we'd done it earlier.

In our case, I also found it helpful to only use interventions that respected my son as a person instead of fighting to change him. This is different for different people in different situations, so may not be best for you. But we did not force him into awkward socialization, actively encourage him to make eye contact, etc. as many professionals pushed us to do because it was pointless ineffective torture for him.

(Also, with my kid and many like him, reward systems just plain don't work. So if you try them and they don't, don't fret about how you're "doing it wrong" or whatever.)

Taking control over how we were handling it because we knew our kid better than the "experts" was very helpful in keeping me from feeling overwhelmed and judged. I still worried that we were making the wrong choices, but doing what felt right instead of what felt wrong made a huge difference. (Hopefully you're not encountering that sort of problem, but just in case!)
posted by metasarah at 4:47 PM on February 29, 2016 [4 favorites]

Best answer: An additional couple pennies to my original $0.02.

Sounds like your husband has an awesome job of the sort that is hard to find/get. I am very wary of the posts stating he should quit...that's pretty extreme/absurd given what you have said. I don't think him being home 25% more (and possibly miserable/jobless?) Would solve anything. Sounds like you are like many moms and stress over being perfect for your kid/getting your kid the perfect environment.

My advice is accept that it isn't going to be perfect. The situation. Your kid. You. That's fine! Again, holy crap I wonder if you have any social worker friends/family because if you knew what some parents were like you would be giving yourself SO many gold stars.

Practical advice? Maybe you are pinning your self-worth on your kids. Go after a goal for yourself. Exercise. Read books and eat chocolate.
posted by hypercomplexsimplicity at 4:51 PM on February 29, 2016 [10 favorites]

Best answer: Before she was diagnosed, I thought she was just like her dad: brilliant and rigid. Total engineer personality.

She is still just like her dad. He's probably on the spectrum too and it's not that unusual.

Please check out this book, The Thinking Person's Guide to Autism.
My friend Shannon is one of the authors, and in the course of raising her kids (one of whom, Leo, is autistic) she has really worked out a positive approach to the whole thing. One of the key things for her was getting to know some of the autistic adults who are hidden in plain sight throughout society and getting their advice.
posted by w0mbat at 5:08 PM on February 29, 2016 [4 favorites]

I haven't read the other replies. Responding to this:

How to give more of yourself when the bank is empty.

When I was in your shoes, I learned that a tall glass of water and/or good food and/or a short nap (for ME, not the child) was often the difference between wanting to throw myself off a bridge and feeling like "the sun will come out tomorrow... Etc"

You might also make sure you are taking a multivitamin and getting some regular exercise. If nothing else, go for a walk with the kids.

Oh, and I used to take them to the pool so I could lay down in a lawn chair and be mostly left the hell alone for a few minutes while they wore themselves out. This was sometimes sanity saving.

In case you did not notice: I also memailed you earlier.

Best of luck.
posted by Michele in California at 5:18 PM on February 29, 2016 [3 favorites]

Best answer: Make a list of everything you do. Everything. Then take a look at what your husband can do, including when he's on the road. Even if he's on the road, he can send birthday cards and gifts to family. Send follow up emails to the school or other members of the team. Order groceries online. Set up recurring delivery of items. Order medical records and scan them, then arrange in binders. Develop a filing system. Fill out grant applications. Write up medical receipts. If he isn't doing stuff like that when he's on the road, ask him to step up.

Medication made a huge difference for my children. Seriously. We were doing everything else - cbt, play therapy, family therapy, parent-child interaction therapy, collaborative problem solving.... Then I got my kids on medication and it was such an enormous relief to our very strained family system. If you aren't already trying this and it has been suggested, please take a look at it. I thought people were drugging their kids until I ended up in this situation. And i resisted medication for my kids for a very, very long time, while we all suffered and routines started to get wired into their brains. When I finally tried medication, it made such an enormous change to our lives that I wish I had done it sooner, so that we could all have a break.

And self care. I go on vacation alone once a year. Nobody with me. And I do weekends away. Most primary caregivers of kids with special needs I know need to do this. A sold week with no demands at all. Whether you do that by visiting a friend across town with your phone turned off for a week or you go to an all-inclusive in Cuba, do what you need to save yourself.
posted by Chaussette and the Pussy Cats at 5:18 PM on February 29, 2016 [9 favorites]

Best answer: She's hormonal, her frontal lobe will kick in, you're a great mom. You are absolutely not a failure. She's in a safe loving home. You're getting her support. This is a hang-in-there situation.
posted by internet fraud detective squad, station number 9 at 5:59 PM on February 29, 2016 [8 favorites]

Best answer: Also brilliant rigid dad quitting or disrupting his life is a recipe for you having another person losing their shit. Not worth it.
posted by internet fraud detective squad, station number 9 at 6:00 PM on February 29, 2016 [19 favorites]

I've lived in GA, but thankfully not in a stepfordian burb of Atlanta. Yikes. I can't speak to your troubles with your daughter, but will send some virtual hugs for you.

What about a Unitarian church, if you want to be connected to a spiritual community without too much traditional religion? I've lived in Georgia, and it is hard to live there without ties to some sort of "religious" community:

I am trying to do yoga and meditation for my own problems, and they are something you can do cheaply with youtube videos or with an app on your phone or with podcasts. I also really enjoy listening to different types of podcasts to help go to sleep or just to get away from my own repetitive negative thoughts sometimes. (Some trivia: "Stuff you should know" and "Stuff you missed in history class" are produced in Atlanta.)
posted by bessiemae at 6:49 PM on February 29, 2016 [2 favorites]

Addressing school: do you feel like they have appropriate measures in place? Might it be possible for the teacher to have a buddy classroom your girl could go to, if she gives a signal to the teacher (subs could be apprised of this)? A place for her to regroup a little? Or even a spot in the classroom? Has the option of having a paraprofessional been brought up to help deal with the emotional outbursts?
posted by bookworm4125 at 6:54 PM on February 29, 2016 [1 favorite]

Is your psychiatrist doing talk therapy with you or just medication. You could really benefit from having an hour a week to talk to someone who cares about YOU to help you get your head around what everything that is going on for you. In California at least, this is usually a master's level person (LCSW, LMFT) and if you ask around, there a lot of them that have personal experience with parenting challenges as well as professional training to help you through this.
posted by metahawk at 7:19 PM on February 29, 2016 [1 favorite]

A friend with a high needs kid (not on the spectrum, but serious SPD plus giftedness plus other things) has a commitment to herself to do one yoga pose, for ten breaths, every day. Sometimes that pose is savasana (corpse pose - lying on one's back), but it's a small recharge.

Self care doesn't always look like getting a massage or going to the spa. For some of us, self-care is the basics: making sure to eat well (or not horribly), taking care of basic hygiene, taking deep breaths, and going to bed as early as we possibly can. Between that, therapy, and the sense of perspective some folks are presenting here (you are a good mom!), you can go far.
posted by linettasky at 7:28 PM on February 29, 2016 [1 favorite]

When my daughter was in high school, we had a conversation about tornados and shoes. Shoes walk down the nice path that is set in front of them. They have no trouble staying on the path. In fact, they often prefer it because it helps them get where they want to do. Her brother was a shoe. Tornados can't travel in a straight line - it is physically impossible. Tornadoes who try to stay on the path like shoes have a very hard time - they try so much harder and yet they do so much worse at what seems to come naturally to everyone else.

As parents, we want our children to reach certain destinations - adult lives that are filled with meaning and happiness. The smooth path to that involves doing well in school, going to college, falling in love, starting a family etc etc. Parents of shoes try to optimize the path - worrying about good grades, piano lessons and so on. Parents of tornadoes have to figure out, if any, of those traditional markers of success make any sense for your child and then how to guide, as best you can, your tornado to hop in something that is more or less the right direction. If is very hard work - a tornado is much harder to control or direct. If you have problems that are totally foreign ( and much harder and more exhausting) than the parents of a shoe.

Your version of this job is more challenging and your standards need to be more flexible but you are doing an amazing job of the thing that all parents are called up on do - supporting your wonderful and unique child and helping her grow into her best self.
posted by metahawk at 7:33 PM on February 29, 2016 [8 favorites]

I have two high-needs small children and an oft-traveling spouse. The two things that have helped me the most are:
1) I negotiated with my husband to get Friday nights off. He comes home early and takes the kids, I go out somewhere. It took a while to feel like this was really useful but it is. I often just get dinner and see a movie but having a night I know I don't have to deal with kid stuff is huge.

2) I started seeing a therapist for myself. It's helpful partly to vent and partly to develop techniques for dealing with my anxiety surrounding the kids. (Ok, and also some of the recurring rough spots with my husband)

Between (1) and (2) I'm starting to feel like I have a grip on things, and that's something I haven't felt in a long time.

P.S. I feel you on the religion thing. I grew up in a slightly more rural part of your neck of the woods. It's... rough being an atheist out there. Even worse being a paleontologist's kid. Hang in there.
posted by telepanda at 8:06 PM on February 29, 2016 [3 favorites]

I also immediately thought of the Unitarians when I read your follow-up - I grew up in East Tennessee in a baptist family so I know how that is, but had a few friends who were Unitarians and they and their families were so great and accepting and just cool human beings. You're right that communities are so important for support, that might be a good place to look in Atlanta.
posted by ukdanae at 12:51 AM on March 1, 2016 [1 favorite]

Response by poster: Great suggestions on self-care and building a better support community. I am thankful.
I'd love to hear more from parents who are/have been there!
posted by heathrowga at 5:47 AM on March 1, 2016

Best answer: I was there. When my son was three, my husband started working out of town four days per week. We also had a seven month old baby and our son was in the process of being evaluated for developmental/behavioral disorders. He was eventually diagnosed with sensory processing disorder and, much later, severe ADHD. He is also very, very slightly on the spectrum and is incredibly brilliant. Just one example of the issues we faced on a regular basis: what we called "the black rage," when he would just go BALLISTIC when something unpredictable happened. Good times, good times.

So I was basically on my own for most of the really hard work of evaluations and trial-and-error w/r/t treatments. The one thing that helped the most was having a support network. I had a couple of friends who were completely in the loop with my son's ongoing struggles and who would listen to me vent whenever I needed them to. Just two people on the outside of our family, and they were lifesavers. My husband was great, my family were great, but they kind of had to love my son, you know? My friends loved him and me *just because*. It was invaluable.

As for family logistics, we worked out some stuff that made my "single parenting" during the week much easier. We had a binder where we kept all our son's paperwork plus notes about what was said in appointments and during the three days that my husband was home, he took over 100% of the medical/psychological care of our son. The binder made it easy so there was always continuity of care. It was so, so great to have three consecutive days off, where I could focus on my daughter and other things, knowing my son was still being actively cared for. When it was possible, we would include my husband on conference calls during appointments/ meetings. That was super helpful.

Things eventually do get easier. As these kids mature, so much changes for the better. Try to see the end goal, a happy, healthy adult, and it'll be easier to get through the tough times.

Our son is now 19 and is in college 500 miles away. And thriving!! Dean's List first semester! His friends took him out, off campus, for his birthday! We feel so, so proud. There is light at the end of your tunnel, I promise you. You can do this, you ARE doing this, and you're doing great! MeMail me if you want/need attagirls, or just to vent.
posted by cooker girl at 6:42 AM on March 1, 2016 [2 favorites]

Best answer: Why do you feel like a failure of a mother? Do you have specific expectations/hopes/dreams for your kids that now aren't being met (or you feel are at risk of not being met)? Do you have really specific/high expectations for yourself? Are you judging yourself for your emotions? Are you judging yourself for appearances? If you can pinpoint where the shame is coming from, untying this knot will get a lot easier.

I'm an autistic adult with one likely autistic parent (who travelled a lot for work) and one likely non-autistic parent (who ended up doing a lot of housewife stuff that she HATED). I was never diagnosed as a kid. I remember middle school being the worst period for me and then I calmed down in high school; my sister found both really difficult. I also remember that my mother seemed extremely disappointed in us all the time because she had envisioned a different life for herself and that's not how it was playing out.

Things that helped her: hiring a cleaning service, getting help making meals (eventually from us as we got older), not doing a single chore after 9 PM because that was her time for recharging, getting us to carpool to things, and allowing herself to engage in hobbies she found peaceful (she did stained glass for a while, then when we got older she got a motorcycle).

I also encourage all parents of autistic kids to read blogs/books by autistic adults. It's a different kind of support than that provided by other parents but I think it can be helpful to know that there are people out there with similar brain types to your kid who have figured out coping mechanisms already, who can explain these to you in a way that your kid might understand, and who can provide you with reassurance that we grow up too. (If you find that therapy is stressing your kid out and making life harder, I would suggest taking her out of it for a while. Especially if it's ABA-based.)

Anecdote: I found middle school hopelessly boring and would act out a lot unless I was allowed to do my own thing like doodle or read an entirely unrelated book. I spent most of grade 6 math reading The Lord of the Rings under my desk. I did fine in math. You might be able to get your kid to brainstorm some less disruptive alternatives to flipping her desk (or you might not, it's not your fault either way, but I felt I would suggest it).
posted by buteo at 6:47 AM on March 1, 2016 [3 favorites]

Best answer: I agree that support for you would be great. In addition, the book Parenting without Panic is billed as a pocket support group for parents, and might have some strategies for times when you can't get support from a group. Full disclosure, my sister-in-law wrote it, and I think she's done a great job of helping other parents in similar situations.
posted by ldthomps at 8:40 AM on March 1, 2016 [1 favorite]

Best answer: Does your husband understand how taxing it is for you when he's gone? Is his "as much as he can" really as much as he can?

Mine emphatically did not understand, and he thought he was doing as much as he could. But then I made him read this thread and I swear to God it changed him for the better - he started cooking more on weekends, started seeing it as his responsibility to leave us a fridge full of food when he headed out of town, in general started stepping it up. It was also the seed for the eventual negotiation of nights off.

The other thing we've done is hire an after-school nanny for our kids, because that's where we needed the extra help most. You might benefit from having a college kid or someone come and clean up twice a week (dishes, laundry, general picking up) - we had someone like this before we hired the nanny. The problem with a house *cleaner* is the house has to be tidy enough to clean - we hired a picker-upper. She came for 2 hours twice a week and made a huge difference. It was $50 a week well spent and we would happily have cut other things from the budget to make room for it.

In re. feeling like a failure, I hear you. Ellyn Satter is all the rage these days - put food in front of kids and they will eat appropriate amounts! Kids do not starve themselves unless the parent is doing something wrong! and yet I had one kid who starved himself to the point that he screwed up his metabolism and now a second who's losing weight at 2. I know it's not my *fault*, I'm pursuing all the necessary medical channels to find out what kind of help we need, but what the hell kind of parent can't feed a single one of their kids, right? GAH. Your situation is different, but probably shares some major themes. All I can say is just to keep reminding yourself that you're doing everything you can to get your daughter the help she needs, but that help doesn't come in the form of a magic button. Hang in there.
posted by telepanda at 9:29 AM on March 1, 2016 [2 favorites]

Response by poster: Thank you all so much for your responses. When I wrote this, I was very "done."

School has been gently reminded to follow all parts of the IEP, not just the ones they feel like doing.

I've made a few small lifestyle changes, which will hopefully take root.

In a huge, unexpected change, I received a call from the local huge autism research/treatment center saying they finally had an opening to evaluate my kiddo. Better yet, since I'd signed her up on the research side, they did a free full neuro-psych workup on her for free (as part of getting her into the system).
If you live in the Atlanta area and want more info on working this trick, PM me. :)

The call came in on Tuesday, and she was seen today. I have to go back again tomorrow for another 2 hours of assessments and interviews about her. I'm more than pleased to do this. I think more information about her and her glorious brain, the better.

I can't tell you how much I appreciate the responses and the MeMails. Thank you.
posted by heathrowga at 10:24 AM on March 3, 2016 [1 favorite]

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