How do parents of aspies take care of themselves?

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I'm very new here, so forgive me if this is a duplicate subject. I was scrolling through the topics and there is so much to read and learn, what a wealth of information! I have an 8-year old son (I'll call E) who was diagnosed at the end of 1st grade; we are incredibly lucky to be in a school that is committed to working with E and me to come up with creative and effective solutions. He has an IEP that is largely followed, a private therapist who has built his trust in her so they can frankly discuss his issues, and regular social skills classes at school that work He and I have similar personalities, so I've always been able to intuit what's going on with him and we have a good level of communication; it's easy for me to get him to "buy in" to trying appropriate behaviors. And not only that, since he found out that he has AS, he has been personally committed to learning appropriate behaviors, and he is an excellent self-advocate. sounds great, huh? So why am I on medication instead of him? Nearly every minute of every day is taken up with thinking of E. Perhaps it's just because I've only recently jumped off of that "newbie" learning curve where I thought I'd read EVERY book, conduct an in-depth investigation of EVERY therapy, listen to everything that everybody does/says/thinks about AS parenting, etc...maybe parents reach a cruising altitude after a while, where things are under control and stay there? But in the meantime, it's stressful to receive constant e-mails at work from the teachers with the details of E's latest sensory meltdown, it's daunting to realize that the start of every school year will involve an extended teacher training effort, so far we're 2 and 2 for nearly pulling him out of school in October or November for seeminly insurmountable behavioral issues (followed by a recap of teacher training, brainstorming, and implementing new behavioral tools that inexplicably work)....Although most NT parents I meet are curious and supportive, I have my own anti-social (though I tend to think of it as "self sufficient) personality that makes it difficult for me to make close parent friends, and I haven't yet found a good AS support community in my local area. And I'm just plain curious. An afternoon off, a massage, infrequent time at the barn with my unfortunately neglected and aging horse, yeah, it's great and I enjoy it while I'm there. But on my way back, it's like a descent into this overwhelming habit of exhaustion. How do y'all handle it? How do you achieve balance, in your life, your marriage, parenting your "easier" NT kids? Do you ever learn to put a sense of perspective on parenting your AS kid? Or is extreme parenting pretty much what we're all signed on for? In short:

I feel as though, in the grand scheme of the AS world, I've got it easy. And yet I'm super-stressed out and trying to figure out how NOT to be. How does anybody else do it? Or even more ominously, DOES anybody else achieve a reasonable stress level?

Well, I'm in the process of pulling my son out of school to homeschool him. You can read my threads about it-it shows my stress and then what happens when we actually do it.
I knew the school communications were an issue with my stress-led depression, but I didn't realize how much. I have been depressive since my son was born, when he was a toddler-around the time he was referred to a neurologist-I got to a severe level. Moving and working helped a lot and I thought I was okay. But when I took over the householding job again, it got bad. I can't handle confrontation and talking on phones, I get brain farts when I need to ask questions.
Pulling Pop out changed everything completely.
The issue for you seems to be that the school seems willing and ready to help your son, and he is able to self-regulate? Can't tell but he might be doing well in school.
You may need to cut down on the communications. Telling you about the tantrum/shutdown/meltdown isn't as important as investigating what triggered them in the first place. That was what missing in my son's situation. The aide would go on and on about his hitting, screaming and name-calling but denied anything triggered it. The triggers are the key in helping your son self-regulate.
He may need to walk away from a situation. I think teachers and aides are too reactive and are looking how to calm down a child AFTER a meltdown, but it's too late by then. It's important to prevent them in the first place.
I want to emphasize that my depression and stress were not caused by my autistic son. I was depressive shortly after childbirth and there were a number of physical and environmental factors that played into the situation. The fact that I'm spending more time with my son and I'm actually feeling better confirms my suspicions that the stress was from outside sources, not "autism".

Hi KimJ--Yeah, E generally seems to handle things well at school, though we go through regular times when it all seems to fall apart and there's an intense flurry of e-mails, phone calls, information gathering, consultation, eventually an IEP meeting, brainstorming, attempt at a resolution and ultimately fine-tuning the resolution. Then hunkering down for the next round. I think that my question about how parents deal with it all stems from a recent intensive go-round with the school, I'm truly not cut out for this although I'm doing it well (it takes a huge toll on me, I'm so much more comfortable living my own quiet life than I am being an active advocate for him!). I guess I'm just wondering after 2 years of this, does it get any better after 3 or 4 years? After middle school, etc. I know it's all so individual for each kid...

I've thought about asking the teacher to cut back on communications, but in a way I feel as though I have to gauge her reactions to his behavior as much as I have to keep tabs on how he's doing, since she tends to get emotional, feeling as though he's being mean to her when he's really just being himself. The tone of her e-mails clues me into how she's feeling. Also, since hardly any of the teachers have any autism or AS training, I am basically a year-long AS consultant for the teachers he has (though thankfullly she is attending an AS workshop next week, if she can just learn that it's an organic part of him rather than a behavioral choice, she will deal with him so much better!).

He has chips he can use to turn-in to the teacher any time he needs space. He can go to the counselor's office, special ed teachers' office, or the principal's office, and they are all prepared to work him through his anger and frustration management skills. It's worked great, and he's getting a good handle on how to be angry or frustrated without blowing his stack--except for last week when the teacher took away the chips because he was playing with them. Ugh. We did fix that pronto. Like I said, he does pretty well, they're willing, but things go wrong regularly and I have to be ready to spring into instant action, no relaxing allowed!

E. begs me to homeschool him, he's very aware of what the drawbacks are to being in a classroom full of kids, he dreams of being able to give verbal answers to everything and being able to learn without having to listen to someone, to never have to encounter other kids It hasn't come to that, yet, there's still a lot of benefit for him to be in the classroom...

It's good to hear that spending more time with your son is helping with the depression, that is truly a wonderful thing and it makes me smile to hear it! I too don't think that E. is "causing" my anxiety and depression, I think it has a lot more to do with my inability to find that mythic "balance" that self-help magazines preach. I'm on overload but I can't figure out how to back off my effort without failing to give him the help he needs so badly. Hence the questions.

"I think it has a lot more to do with my inability to find that mythic "balance" that self-help magazines preach."

Here here sister... and "mythic" it truly is. I struggled for a handful of years trying to find that magic bullet that would put it all under control for me. I have been on medication, been in family and individual therapy, multiple day planners, different coping strategies... BUT... my life is my life. I work full-time, have 3 boys - a brilliant 11 year old Aspie, a brilliant 2 year old NT and a brilliant 7 month old. My husband works an off shift and quite frankly isn't that engaged with any of us... I would change him if I could, but I wouldn't change the rest of my life. We have our good days and everything gels and we have our bad days with the emails from school, phone calls from school, phone calls from the babysitter, etc. My stress relief... seeing all three of my boys safely and soundly asleep in their beds by 9 pm (on a good night) and then a smooth glass of wine while I try to convince myself that I should be doing another load of laundry instead. Let's just say, the laundry can wait... my mental health can not... LOL.

I think a lot of it for me has come down to honest acceptance that my life is my life and my life has autism in it, just like my life has a child going through the terrible two's and potty training and a teething infant. It's all part of the colorful landscape. When I am stressed, I let myself be stressed and ride the tide. I guess the only nugget of advice I can pass along is that when you are close to hitting the wall again... laugh out loud and realize that there are indeed a whole lot of people in this world who have it a whole lot easier than we do and still think they have it so tough. Not everyone gets the chance to walk in our shoes... not everyone has what it takes...

some days are so terribly frustrating and depressing~i just crawl into bed & let my husband take over.....other days are wonderful. sure, we have our kids' bag of stuff to deal with, but every family has something which they have to deal with....my hubby and i make a point of trying to get out without the kids at least once a week ( our oldest are 12 & 14, and are currently not squabbling)~when i say go out, i mean go and get a cup of coffee and sit at the beach and watch the waves.the total trip lasts maybe 1 hour, but it's amazing how refreshed we become by taking those mini-vacations !
for those times that the kids cannot be left to their own devices, hubby and i take turns getting out . i, too, find it hard to not think about the kids when i'm gone...

Before Pop was old enough to really interact, we used to take destressing drives. An impromptu drive could be 1-2 hours, just some round trip with fresh scenery. We lived in the Midwest and so everything was new to us. A lot of highways that led to small towns.
Long novels are tough for me, especially when things are tough. So, I try to read easy books, the Little House books are very comforting.

My mum used to take very long baths. She had my sassy sister and I to deal with and she was babysitting three brats, on top of that. I feel sorry for my mum, when I look back.

Brosmadre--I've sort of come to the same conclusion, my life is what it is, and I really identify with a lot of what you wrote (including the glass of wine instead of laundry--on the nights I can stay awake past 9 pm that is!). I'm just still struggling with this whole concept, though. I'll think I'm doing OK, working hard but keepign it together, and my family members and my few friends get concerned about me and say (not) helpful things such as "you should take it easy." or "you need a break." or "you are working too hard." And I start thinking. Am I not understanding how to take a break when there really is a way I COULD be doing that? Is there a way I could be working less? Caught in the endless triangle of tryinig to balance work/family/money I feel as though I'm doing my best, but I always wonder if...if....if. Maybe I'm not doing my best. Maybe someone out there has figured it out, and is happily raising their kids, making enough money, and spending lots of quality time with their hubby while keeping their house sparkly clean. and if there is, I want a personal interview with this person.

KimJ--I too find that I need to keep things simple. Once upon a time I loved getting involved in projects. Painting, music, gardening.... I finally discovered that my stress level was strangely lower if I wasn't trying to do those projects around the kids, the normal interruptions would set me on edge. So yeah. Reading, lurking on websites, anything that keeps my mind from running on its gerbil wheel but can be dropped in an instant without regret. Because, like, you never know when you will have to go make a volcano in the driveway, repair a princess tiara, mediate a dispute over who gets to hold the cat, or troubleshoot a simple electrical circuit RIGHT THIS SECOND

Funny you mention about the October/November changes - that probably coincides with the time they change over the classrooms. All the Back-to-school stuff comes down and Fall decorations go up which forces your child to re-learn his environment. If you're in a cold-weather climate, it's also the time when recess may change and windows are closed. Sensory issues could be a big source of the problem(s).

It also sounds like your school is blaming you for his behavior while he's in THEIR care. You write they are good about providing services, yet they call, e-mail, etc. whenever there is a problem. If he has a problem AT school then it is NOT your problem - they need to examine what they've done to cause/create this problem.

Just like with the chips incident - they contacted you because THEY took his chips away. Now they want you fix what they created??

They can't have him playing with chips during learning time, but they need to find ways to establish rules and have him choose to follow the rules (you can keep the chips on your desk but if you play with them, then you need to put them on the teacher's desk until the next break time when you can count them again). They can't just take things away - it seems too random and unfair. Or, worse, like my son, they are stealing from him!

We do homeschool now since our school district refused to help our son. But, when he did attend there, I would always ask them, "What did you do to him this time?" (Yeah, they hated me!). At least his regular (and overwhelmed) classroom teacher started to spend a little time trying to be more creative and understanding. She started trying to connect the dots that would lead up to meltdowns but she just didn't have the resources to be very effective. The other adults at the school were impossible and kept blaming us for what they did.

Just make sure you are putting blame where it belongs. Raising children is hard enough but when our minds keep re-hashing events and trying to find clues and fix things and keeping us up at night - don't add to it. Tomorrow really is another day and you will be ready.

As far as the cat, let the cat decide. Take it, put it on the floor and let him/her choose. Then, move on - if they fight over the cat, well, there's probably a toilet to be scrubbed - which do they want to do? scrub a toilet or find something else to do that doesn't involve fighting? (This works better if you're holding the toilet brush).

Next time someone says you need to take a break, agree and tell them to come babysit so you can finally get to see a movie. Say that enough and they'll either actually come babysit or stop offering "help."

My newest best friend? Xanax. Because of my DS? Never in a million years. Because of guidance counsellors, diagnosticians, teachers and doctors who all haven't got a clue?? Absolutely!

Our ds is doing very well lately, however it is a daily struggle to keep the supports in place that are keeping him there because the better he looks to school, the less they want to do for him. And the first place the negativity shows is at home, as he will hold it in for HOURS rather than melt down in public.

And so if he comes home and has a meltdown, I know he's probably had a bad couple of hours leading up to it and that upsets me.

Elementary was much more accommodating. They provided him a wonderful social skills class which they called "game room". Jr. high calls it "Learnng to be social". Wonder why he didn't want to go??

I, also, suffer from some "social anxiety issues". I'm not good in groups, at parties, even in my large office. So I'm not the one to teach him those skills. And it leaves me without anyone to talk to about these issues, except folks on the forums.

The first year after his dx I ate, drank and slept everything I could get my hands on about AS and ASD's. I'm a *little* better now.

Agreeing with aspiesmom1 about the true source of stress. And isn't it true that if they look "good" the supports drop down at school....it's sad to even contemplate the ramifications of that statement. This evening I will be attending a seminar about AS supports in junior high and high school in our county school district, I sure hope it turns out that there's more out there at the upper levels than we've gotten so far! I haven't yet seen any school district seminars about AS supports in the grade schools.... hmpf. I am curious, though, is your son social with other AS kids in junior high? And SSRIs are my newest best friend, too--now that they're not making me sick to my stomach


And three2camp, you sound like a very sensible person! For me, sofar, it's been a very delicate balance for E's school... I know of several other parents who have pulled their children from the same school for reasons that you outline. My approach is much more hands-on and involved (too involved, I'm sure). I recognize that the teachers aren't trained to even recognize what his issues are, much less how to approach him about them, even though they're very willing. Removing the chips was sheer stupidity on the teacher's part; he'd been playing with them (he plays with anything he can get his hands on, using it as an imaginary tool for flights of fancy...) and she just wanted the Playing, To, Stop. WE know that was the wrong thing to do, but she didn't. She didn't even think far enough about it being wrong to notify the special ed teacher she'd done it. things like this happen all the time, so I have to stay in the loop enough that I can interpret what's going on with him. Yes, ideally I wouldnt' have to do this. But other people who work with E are constantly amazed at his progress, my way of keeping that progress going is by, well, driving myself into the ground. Hm. You make a very good point. The good news is that each of his teachers will be fully prepared to handle future AS kids in their classrooms! (and boy howdy aren't there a lot of them already?)

And the cat? He doesn't help He's another kid. But I do like the toilet scrubbing option! Maybe I can get the cat to scrub the toilet (that would at least entertain the kids....).

OK, now that was just silly.

Elementary school was a walk in the park. DS wasn't dx'd until he was 10 (just weeks prior to the end of 4th grade) but all through 4th grade he got lots of accommodations and supports anyway. Prior years the school really worked with us - they knew his behaviors weren't something he was doing to be purposefully bad - I just wonder if they didn't already have an idea what was going on and left me to find out on my own.

After the dx, elementary put into place every single support and accomodation the psychologist recommended. 5th grade was our best year ever. They even placed DS in a classroom that was carpeted (since noise is an issue for him).

I will say that DS has come a long, long way, and he wanted to "reinvent" himself for jr. high (new kids - ones who didn't know him when he drooled, that kind of thing, wanted to make a good impression). He started wearing jeans (never wore anything but sweats, tshirts and slip ons before this) and lace up sneaks. Even doing up his hair in the morning! But I knew all the class changing and constant schedule interruptions were causing him to get confused and disorganized.

So far we've had three fights...er, meetings. After involving the board of education and having a lawyer whose a friend make a phone call, we have the supports we need again in place.

At one meeting, just to give you an idea, his science teacher went on and on for 15 mins about my son, about a child who sounded nothing like the one I know. Finally after 15 mins she mentioned where he sits in class, and I said no, he said he sits by the window because he says it's hot there with the sun at the end of the day. Turns out she wasn't even talking about MY son!! ! She had no idea who she was there for.

This is why I don't let my xanax prescription expire. There are nights I literally would get zero sleep without it.

My son, otoh - he's bright, funny, loves to play the tuba, and is the light of my life. He tells me not to worry, but how can I not?

Oh, great story! Wow, though, about the science teacher.

Yeah, we ran into her at the dollar store on Saturday. She was clearly still confused about who we were in relation to our son. Scary.

This is a very good topic. And it's probably one answer per individual.

I managed to coop with the first kid, the second barely, the third caused mental meltdowns every day since I couldn't handle it. I have three kids with severe allergies, with adrenaline following them everywhere and they have injected themselves too since pre-grade kindergarten when they eaten contanimated food, I've lost count of times I've administred adrenaline whilst calling 112 (like US 911 but europe) and ADHD and at least two with Asperger....

My oldest is very interested in sports, which I'm not, but I encourage her to try out whatever she wants, because it's good for her. She's always full of bruises and scratches after a day in school. But fortunately, schooltime causes more bruises than home activities, so we've never been questioned about if we hit her or something.... yesterday on Ju Jutsu training she dislocated her shoulder when she got tossed, popped it back in in the landing of the mat (the instructor heard the sounds of the shoulder), got a tiny crack in the elbow bone and a broken blood vessel in the shoulder causing her look like a red-yellow-blue zebra on her shoulder. She was most concerned about the sparring partner that she would think it was her fault, the arm was just "something that always happens to me anyway". Our goal with the Ju Jutsu training is to teach her to, yes, take a fall in a way that doesn't hurt so much...

My mid son has medicated ADHD, thank god for Concerta. Without that he wouldn't be able to go in a public school. He's a lonely person with a lot of friends. Strangely mostly the opposite sex. We choosed school for him on the amount of kids going to school from his kindergarten group, so they already knew what's special with him. He is lousy on handwriting, just like daddy, but the first person shooter games he's been playing, even online, have made him a nick he's fond of, "Railrun", a misspelled "railgun". The asperger parts showed up when he started the medication for the primary (as we thought) ADHD, which is a severe handicap for him. Without medication he just goes sky rocketing and he hates it. We've after planning thoroughly with the teacher, and a promise to himself, taken him to school once without medication. It was havoc. He got so tired of himself and not being able to control impulses that he simply locked himself into a toilet and cried, just so that he wouldn't mess things up even more. We've since then never been questioned about the medication in school.

My youngest, has just started medication against his ADHD, and as his elder brother, AS surfaced after the initiated medication. He can sit for hours in his room and just watch a marble rolling down a track he built. Or play with a deck of cards laying a solitaire game of cards. Suddenly he's been processing the days events, and he can't stop talking no matter how hard he try, and then suddenly he has said what was needed, and goes quiet. He's having severe difficulties about what's socially accepted / appropriate and what's not, and he finds it very fatiguing to realy try to get accepted. Since I and my youngest are exact copies of eachother behaviouraly seen, we simply can't work things out between us. I can't bend my social behaviour rules, and he doesn't accept them on his side. Most of the time I simply resign with the solution that either of his siblings has to fill in and say what they can accept in behaviour. I mostly get right due to experience, but I have also been completely wrong according to their set of behavioural policies.

And I tend to care about everything but myself. My ex has reminded me of taking a shower, until I triumphating made some easy to follow spreadsheet grids, which I taped up in my apartment on strathetic spots, so now I even remember shaving. Sounds weird, but my focus when I wake up goes directly to work and planning the day for the woman I don't live with anymore.

This is a very good topic. And it's probably one answer per individual.

I managed to coop with the first kid, the second barely, the third caused mental meltdowns every day since I couldn't handle it. I have three kids with severe allergies, with adrenaline following them everywhere and they have injected themselves too since pre-grade kindergarten when they eaten contanimated food, I've lost count of times I've administred adrenaline whilst calling 112 (like US 911 but europe) and ADHD and at least two with Asperger....

My oldest is very interested in sports, which I'm not, but I encourage her to try out whatever she wants, because it's good for her. She's always full of bruises and scratches after a day in school. But fortunately, schooltime causes more bruises than home activities, so we've never been questioned about if we hit her or something.... yesterday on Ju Jutsu training she dislocated her shoulder when she got tossed, popped it back in in the landing of the mat (the instructor heard the sounds of the shoulder), got a tiny crack in the elbow bone and a broken blood vessel in the shoulder causing her look like a red-yellow-blue zebra on her shoulder. She was most concerned about the sparring partner that she would think it was her fault, the arm was just "something that always happens to me anyway". Our goal with the Ju Jutsu training is to teach her to, yes, take a fall in a way that doesn't hurt so much...

My mid son has medicated ADHD, thank god for Concerta. Without that he wouldn't be able to go in a public school. He's a lonely person with a lot of friends. Strangely mostly the opposite sex. We choosed school for him on the amount of kids going to school from his kindergarten group, so they already knew what's special with him. He is lousy on handwriting, just like daddy, but the first person shooter games he's been playing, even online, have made him a nick he's fond of, "Railrun", a misspelled "railgun". The asperger parts showed up when he started the medication for the primary (as we thought) ADHD, which is a severe handicap for him. Without medication he just goes sky rocketing and he hates it. We've after planning thoroughly with the teacher, and a promise to himself, taken him to school once without medication. It was havoc. He got so tired of himself and not being able to control impulses that he simply locked himself into a toilet and cried, just so that he wouldn't mess things up even more. We've since then never been questioned about the medication in school.

My youngest, has just started medication against his ADHD, and as his elder brother, AS surfaced after the initiated medication. He can sit for hours in his room and just watch a marble rolling down a track he built. Or play with a deck of cards laying a solitaire game of cards. Suddenly he's been processing the days events, and he can't stop talking no matter how hard he try, and then suddenly he has said what was needed, and goes quiet. He's having severe difficulties about what's socially accepted / appropriate and what's not, and he finds it very fatiguing to realy try to get accepted. Since I and my youngest are exact copies of eachother behaviouraly seen, we simply can't work things out between us. I can't bend my social behaviour rules, and he doesn't accept them on his side. Most of the time I simply resign with the solution that either of his siblings has to fill in and say what they can accept in behaviour. I mostly get right due to experience, but I have also been completely wrong according to their set of behavioural policies.

And I tend to care about everything but myself. My ex has reminded me of taking a shower, until I triumphating made some easy to follow spreadsheet grids, which I taped up in my apartment on strathetic spots, so now I even remember shaving. Sounds weird, but my focus when I wake up goes directly to work and planning the day for the woman I don't live with anymore.