Liked it

I really liked this article about high-functioning autism. Like, a lot. I actually said "YES!" out loud.

Why High-Functioning Autism Is So Challenging

Enjoy! Haha. I mean it's not that "enjoyable" but it just felt so relatable to me. And enlightening. So... Relate! (I hope :)

Thanks for the help.

I know this isn't everyone's style, but with every venture in my life if there's any uncertainty on my part I like to read up on it obsessively and ask experts. For me this is especially true in motherhood. I've read some good books (and skimmed some bad books) on the topic. I've asked my mom, my mother-in-law, my grandmothers, my sisters and sisters-in-law, and friends for advice many many many times. Then I run with the advice, or don't, or I try it for a while, and always it ends up with me tailoring it to myself and coming up with new ideas on my own. For me it's been very empowering to connect with others in this way.

Before Theo was born I used to read a now-defunct blog run by several moms called Tales from the Crib that taught me SO much stuff I had no idea about--in particular the nitty-gritty gross stuff of birth and new motherhood that I had never heard of but any veteran mom is like "Well yeah, duh." That was sort of my first foray into the huge world of parenting experts. I've depended on books and advice to help get me through pregnancy, postpartum depression, breastfeeding, weaning, teaching kids to eat, teaching kids to sleep, teaching kids to use the toilet; dealing with fighting, talking back, not talking at all, hitting, biting, tantrums, sibling rivalry, being total slobs, lying, stealing, whatever else you can think of. For me, that help was a godsend. I wasn't born knowing how to do any of this stuff. I need help. And I'm barely 8 years into it so there's a whole lot more where that came from...

The funny thing is that the more I learn and the more hours I log, the more I think I know what I'm doing, the more I realize that my kids are just constantly going to surprise me. In good ways and not-so-good ways. Also, the less I feel inclined to share unsolicited advice to new moms. Ironically, I think I was a lot more likely to share unsolicited advice about motherhood when I was a newer mom myself. Has that been true for anyone else? Maybe I realized that not everyone is as "into" getting advice as I am. Or maybe I realized how much I am still just flailing around figuring it out with everyone else.

Over the past few weeks I attended a 3-session course put on by a local developmental pediatrician and behaviorist called "Managing Challenging Behaviors in Young Children" and I LOVED it. I learned so much, not only about being Theo's mom but also about parenting my other two... and a lot of it was obvious stuff, mainly that I need to be more proactive in preventing behaviors in the first place rather than letting them happen and then punishing them over and over. I got lots of specific, tailored-to-me ideas for handling my own issues as a mom, met other parents who had similar issues and just left feeling like I can totally handle this. Not to mention I met this pediatrician, the one who led the course, whom I had heard a lot about from friends and Theo's therapist before meeting her, and got Theo on the waiting list to see her so that he can get a medical diagnosis, or not (he currently doesn't have one, just his autism label at school), and to find out if there's anything else I should or shouldn't be doing to help him.

Don't get me wrong, life at this stage has its many challenges but I think it's easier than it used to be and definitely easier than it will be once they get to middle school. I'll take my current challenges any time over crying toddlers who poop in their pants and don't know how to talk. No offense, toddlers everywhere. I'm thankful of course for my darling children but also very thankful for the many experts, those I know in person and those I don't, that have helped and are helping Matt and me raise them.

That's my secret.

I'm now 3 months into my no-yelling project and I think it's going pretty well. Unfortunately I did yell last week. Maybe I shouldn't admit this but I felt really good after yelling. But I knew it wasn't going to be a lasting kind of good feeling, and it wasn't. I apologized and everyone got a dollar and I think they all forgave me. And I reminded them that I hadn't yelled in 3 months, so maybe that helped?

Want to know the hardest part about the no-yelling project? Theo didn't get the memo. When someone yells at me every day it's hard not to break down and yell back. But I don't (usually). I think he's improved if for no other reason that I no longer yell back so it can't last as long. But then some days it seems like he hasn't, since I'm not yelling back, so although I'm actively trying to get him to chill, I'm still more of an observer and it seems like it's taking forever and I'm like "when is this child going to stop yelling already?"

I'm not going to recommend watching the movie "Looper" because it's pretty violent, but if you can get an edited version or just watch the ending, the last like 5-10 minutes of the movie were so important to me. I searched on YouTube and couldn't find the scene I'm thinking of, but basically there's this telekinetic child, Cid, about 5 years old, who has a major temper and when he gets mad, well, you don't want to be nearby because everything will explode and you'll be dead. Even his own mother, Sara, locks herself into a safe when he gets angry. In the final scene, he's out in a cornfield causing all kinds of destruction, and, as shrapnel swirls around in slow-mo, his mother puts herself directly in his vision, locks eyes with him and helps him calm down. And of course implicitly changes the course of the entire world by doing so (thanks, time travel). I read this in an online review:

"I believe it was Winnicott who wrote that a parent’s hardest and most important job was to withstand her child’s hatred, in order for the child to understand that he is loved and worthy of love regardless of how angry he might get at his parent. Sara and Cid essentially play out this process. Cid’s telekinetic anger is terrifying, and Sara hides herself from it in a metal safe: she cannot face her child’s hatred just yet, although she does comfort him after his bout of rage has subsided. But in the film’s final sequence, when Cid has lost control of himself and put both his mother and Old Joe at risk, she looks at him and whispers, 'It’s okay. It’s okay. Mommy loves you.' The rest of the sound fades out, and Cid’s rage subsides."

Matt and I worry a little about Ida because she is often either a direct or a collateral object in Theo's path of anger, and although she's very smart and compassionate and I think "gets it" in a way most 4-year-olds might not, it's just not fair to her. I often discuss with the kids that Theo is learning how to control his temper, like I had to do when I was a kid, and that Ida can help him because she loves him, even though it might not seem fair. I don't want this burden to get too heavy for her so I want to give her permission to get angry back and to defend herself, but other times hopefully she can continue to support him and show love for him, since that's the main thing we are working towards.

On a lighter note, one of my favorite movie scenes ever was this line from The Hulk in last year's Avengers movie:

 

Did anyone else get chills in that scene? Mark Ruffalo is so great, first of all, and secondly the line just clicked with me. I so identify with that because I'm calm, and I always want to be calm, but I'm also angry more often than I want to admit. I generally make good choices and I want to be good, but I also want to make bad choices more often than I want to admit. And sometimes I lose it and go for the bad choice.

Anyway. I have figured out that I can't just be calm 100% of the time because when provoked, sometimes I have to "let it out" somehow. I just don't want to let it out on anyone. Running daily helps in a maintenance sort of way, but I would love ideas of how to "let it out" situationally without hurting anyone. You know, when you're SO frustrated and no one's doing you any favors but you really don't want to make it worse. The Orange Rhino suggests yelling into the toilet. I think that's the grossest thing I've ever heard. Any ideas? Worst case scenario maybe I can go dance it out! Maybe I should teach Theo to go dance it out. Minus the smoking and beer drinking.

 

Follow-up

I had a few emails and questions about my last post--all of which were so nice, thank you--and so here is a patched-together response and follow-up.

When I took Theo in to ChildFind, back when he was barely 3 and he had all that testing--this is back when he was doing stuff like lining up colored blocks at home in complicated symmetrical patterns, and memorizing every country on the world map, and not talking at all except to repeat what he heard; pretty textbook actually!--it was all inconclusive as far as autism, although I asked about it. The conclusion was "developmental delay." Maybe some teachers/therapists/social workers/etc. in the public system are sometimes sort of reluctant to use "the A word"? Or reluctant to bring up something that is typically a medical diagnosis? I don't know. I asked my pediatrician many times and she was unconcerned. He defies many of the visible symptoms, and then in some areas he's so textbook, and then in some areas he only has "a touch of the aut," as a psychologist so delicately put it once, referring to her theory that everyone in the world has at least "a touch of the aut."

Then again, I don't know that approaching it with a diagnosis several years ago would have particularly made a difference, for him or for us. I guess maybe we would have started socialization therapy sooner? That's the main change we are making.

Matt and I were talking about this yesterday because it can seem like such a sensitive topic but then it's also not. I mean, I guess I'm technically "sensitive" about it because it's dear to me, but I'm not afraid to talk about it. When I cry about it, it's a combination of the relief and gratitude about sitting in a meeting with 8 public school professionals who are all awesome and whom I believe would take a bullet for their kids (don't think I'll ever get over Sandy Hook, over here), plus the stress about the logistics: "How to Prevent Theo From Pinching People in the Arm." Etc. Then, at the same time I am not planning to label him as "autistic" or "on the spectrum" in day-to-day conversation, if that makes sense. "Yes, Well, Theo's On the Spectrum." "Theo's Got A Touch of the Aut." I think it's important for people in his life to understand it so they're prepared if he loses his temper--family, school teachers, Primary teachers, our own friends. Many of whom read this blog. I think it's important especially for Matt and me to understand it.

I guess that's why I felt like a blog post was a good balance of "this is a big deal" and "this isn't that big of a deal." I don't want to make it seem like some really major hardship to those who are unfamiliar. And the psychologist's initial suggestion a few months ago wasn't a surprise to anyone, but it took several years to get to this point--of having someone suggest it to me, rather than me suggest it to someone and be basically waved off. Theo is healthy. He has a big appetite and will try almost any food. He pretty much does everything for himself, makes himself lunch and takes showers and gets dressed and folds his clothes and takes out the trash and puts away his stuff. He can't put on a pair of gloves to save his life (pretty low muscle tone). Mittens! He sits quietly and participates in Primary. (mostly.) He can carry on a conversation. (mostly.) He likes to hug. He is very sweet. He has learned how to play pretend--something he didn't really know how to do until almost kindergarten. He can read and write and follow directions and do all his academic work. Then of course on the flip side his temper can be dangerous if you try to cross him where he's most rigid, and he just plain doesn't know how to play with other kids who don't truly know him and understand how he works.

One study I read, which was admittedly 2009 so it's not the most cutting edge, was addressing the rise of autism diagnoses. It indicated that half of children whose parents reported them as autistic, had only "mild" symptoms. And a sizable percentage of those children, after however many years passed, were no longer reported as being on the autism spectrum. I have no idea whether there are more severe actual cases of autism spectrum disorder than there used to be (vaccines! red dye #40! synthetic pillows!)(I made the synthetic pillows one up, but come to think of it that is an infliction of the worst order). But at least in part, the rise in reported cases seems somewhat reflective of kids who in past generations might have just been "kinda weird," whose parents are trying to help them and then actually succeeding in some way.

I hope that with help, Theo will head away from an awkward and potentially tragic path, toward a slightly less awkward, and non-tragic one. It goes against my own instincts as a parent to be so involved with things like his socialization, maybe because of the way I was parented, and I naturally gravitate to that "figure it out yourself" mentality in almost every aspect of mothering. But he is unique and will need more help than our other kids, at least in this area, and they may need more help than he does in other areas. Sheesh, they don't include any of this stuff at the hospital when you get the free information packets shoved into your free nylon diaper bag with the free cans of baby formula. (baby formula!)

T-dog

 

Theo was the easiest, calmest, quietest baby and toddler--like almost to the point where we were like, "What is with this kid sitting still for 3 hours at church?" Eventually it developed that he was unable to talk beyond a few words, and he finally started talking in tentative, choppy sentences when he was an older 3, 4ish years old. 

Around his third birthday he started getting services from the public school system as part of his "developmental delay." He eventually went daily to a public special ed preschool, which we loved. He went into mainstream kindergarten and after six months of testing and talking and observing: although he doesn't have a medical diagnosis, the paperwork for the services he gets at the school is now labeled "Autism." That probably wouldn't surprise anyone who really knows Theo. His pediatrician has never said anything about autism but she sees him once a year for about 10 minutes. I think the school psychologist, social worker, guidance counselor, principal, special ed teacher, and regular ed teacher that all know him and talk to him every day, probably have a better idea. 

When I first met with the psychologist several weeks ago and she sort of "broke the news" to me about the recommended new label of autism, I felt complete relief. Like finally there could be a reason for Theo's behavior other than my subpar parenting. Like finally I could stop breaking down in tears when his teacher told me about yet another "bad day." Fortunately, the professionals who work with him are just wonderful people, especially his teacher. She has even cried along with me before. I'm lucky enough to see her and chat with her every day when I pick him up from school. I'm lucky enough just to have her in Theo's life.

Anyway, I guess I just wanted to post about it once to put my thoughts out there, not make it into a huge deal because autism is this sort of fluid thing anyway, and he is really "high-functioning" (buzzword). The label is mainly for figuring out how we can best help him. I'm not interested in making it a label that I always say when describing him, for instance. There's a lot of interesting (to me) literature out there about "autism spectrum disorder" (which is what all autism-related disorders are about to be changed to officially by mental health pros), although most of the studies and articles I have read I can't link to here because I got to them through databases I use at work. 

We live in an area with wonderful benefits and services for school-aged kids and Theo goes to a really top-notch public school. We weren't even thinking about this kind of thing when we moved here seven years ago, and I feel like we hit the elementary-school lottery. I'm not saying he's reading chapter books or knows the times tables; I'm saying that here is a kid who doesn't know how to join in on games in the playground, or how to gulp and move on when the class has to go to an assembly instead of having P.E. But rather than being thrown into the deep end alone to have tantrums and get into fights, he has professionals who know who he is and are helping him figure out how to handle those seemingly minor things on his own in an appropriate way. There are a few things we will change about Theo's education and other activities, like structured social "practice," but nothing huge. He has none of the "stereotypy" (buzzword) like tiptoeing or arm-flapping or refusal to eat or other really obvious things that are a big disruption. Most visibly, he "perseverates" (buzzword) which is basically fixate/obsess. And he has a pretty tough time socially. We joke sometimes that all the tantrums and fights we deal with now are the ones we didn't have to deal with when he was a toddler. (yep. funny.)

Sometimes I wish we didn't have this to deal with, like maybe we could have some peace and quiet when Theo is home, maybe not be stressed about setting up playdates or wonder whether he is going to seriously hurt Ida if I leave them alone for a few minutes, or wonder whether he will find a friend on the playground or if he'll agonize over not connecting with anyone. (We used to wonder if he minded not being able to play with other kids at their level--now we know he minds.) Wonder whether one of us will have to drag him out of sacrament meeting as he makes a huge scene--something he never did as a baby; not surprisingly, it's unflattering on a 6-year-old and the kid is strong. He stayed home from school recently with pinkeye and he and I spent several hours together, just us. Any time I am alone with him he is so pleasant and really a joy to be around. I'm like, "This is the real Theo!" So, I also joke about how if he was an only child and I homeschooled him, life would just be peachy. I guess life would be peachy for everyone if they lived in a bubble and never had to deal with the unpredictable world.

Other times, I feel such complete peace that this is who Theo is. Not only that, but these are trials for Theo--not as much for us--that I really feel he will be blessed to overcome, or at least live with and learn from and have a very happy, normal life. He is so sensitive, so sweet, so contemplative. I get lost in his dreamy brown eyes. He has the best expression on his face when he tells me about something he is proud of. He drifts off and has to be redirected all the time but I like to think that it's a calm and easy world that he drifts off into. He and I get so angry at each other sometimes, but I think all five of us are trying to figure out what we need to do to have peace at home with each other and with ourselves. 

As I tell all of my kids, and should probably tell myself, when things aren't going someone's way and they want to know why, "Because you're part of a family." Having to adjust to someone else's needs sometimes--or all the time--is the price we all pay for the love and companionship that everyone receives in our home, simply by living there. I know I'm willing to pay it. Almost always! (But really always.)