So remember back when I said we’d finally landed a new therapist for Monkey, but we’d have to wait a while to see her? We finally saw her. I can tell she’s going to be very good with him; there is such a difference, sitting down with someone who works with Aspies all the time, versus someone less well versed in “kids like him.”
“Monkey, why do you think you’re here?” she asked him, after some of the initial pleasantries were out of the way.
“Because my mom brought me here,” he answered, ever the literalist.
She laughed. “Well yes, okay, but why do you think your mom brought you here?”
Monkey pretended to think about this. “Maybe she didn’t have anything else to do?” It’s hard to get mad at him when he deflects, because it’s a skill he developed relatively late. If you appreciate the mental gymnastics required for a kid who believes in One Truth to dance around the edges of an answer—and I do—you just can’t get mad at him for it. But after some prodding, he stared at his lap and his voice dropped as he said, “Because I’m bad.”
I share this so that you understand I was in a quivery place well before what happened after. Of course we have told him that HE is not bad, that there are only poor choices, not bad people, and even Very Good People sometimes make Very Poor Choices, but that’s not how he feels. He feels like he must be bad. And now both his mother and his new therapist were launched into a tandem explanation of what he’s heard a hundred times before, and he nodded and waved his hands and turned back to the doctor.
“My mom says I need to figure out how to live in the gray,” he explained.
“Live in the gray?” She cocked her head at him. “And what does that mean, when she says that?”
“It means…” his fingers twisted and untwisted the hem of his t-shirt. “It means that for me, everything is all black or all white. All the time. And most people have shades of gray in-between, but I don’t.” She nodded, thoughtful. “Dogs are colorblind, you know,” he continued. “Everything is gray for them, probably.”
I stifled a giggle.
The conversation continued, and I was pleased to see that Monkey was comfortable, but the doctor never let him wander too far off topic, and he was willing to be led back around, because she was really good at setting up explanations and expectations of what they would do when.
He liked her. I did, too.
“Monkey,” she said, towards the end of the session, “what would you like to do here?”
Monkey was, at that point, exploring her wall of “stuff”—books and toys and games and everything a restless child could possibly want. “I would like to read all of these books!” he said, flashing her a grin complete with a generous helping of dimple. A mere mortal would’ve been slain, you understand. But this was SuperAspieDoc, so she merely smiled and shook her head.
“I mean here in your time with me,” she clarified, “in terms of changing something about your life. What’s the one thing you would really like to be different?”
We’d been there a good 40 minutes by then; we’d covered quite a bit of ground. Monkey had already allowed as to how sometimes his feelings are big and hard to control. He had even admitted that his temper gets him into trouble. And so I was ready to hear another variation of the “I am bad” theme; surely he would say he wanted to be more in control, or get angry less, and then we could say THAT IS AN EXCELLENT GOAL and agree to work on it together and go on our way.
But instead, he carefully put down the toy he’d been examining, sighed a small sigh, and looked right at SuperAspieDoc. “I would like to have more friends,” he said.
My breath caught in my throat. She took it in stride, nodding. “Do you have friends now?” she asked.
“I only have one,” he said. I found my voice and named his other friend (momentarily forgotten by him). “Okay, two,” he agreed. “I really only have two friends. I wish I had more.”
She kept nodding. “So would you like to have… like… a few more friends? Or a HUNDRED more friends? How many are we talking about, here?” I had to hand it to her. She kept it all very conversational. I thought her query was interesting, because was this a black/white “everyone has it better than me” kind of thing? Would he say he wanted a hundred friends, convinced that everyone else has an army of besties except for him?
Monkey took a few seconds to consider it. “I don’t need a hundred friends,” he said. “I’m not sure I know a hundred people. But… two isn’t very many. I would like… maybe three more?” SuperAspieDoc nodded and said something about that being a great goal. “It’s just… I’m not very likable all the time,” he finished, morose.
I blinked back tears. I had a brief but vivid fantasy of building a bonfire out of every book, article, and pamphlet that explains that kids on the spectrum are loners and unconcerned about the people around them, preferring to play on their own. Where’s the book about the kid who loves everyone and wants nothing more than to be liked and accepted, but gets overwhelmed by life so often that he melts down regularly and then the other kids start avoiding him, and he knows EXACTLY why it’s happening but feels powerless to change it? No one writes that book because that book is TOTALLY FUCKING DEPRESSING.
“Sometimes having trouble controlling our feelings can push people away, huh?” SuperAspieDoc said. Monkey nodded. “But I like that goal,” she continued. “I think we can work towards that. Because I can already see you are VERY likable.” Monkey ducked his head and became absorbed in a box of toys.
I feel like 80% of raising up a child to be a functional human is teaching them to understand the connections between cause and effect, and modify their behavior accordingly. Only for kids like Monkey, they’re often oblivious to those connections for longer than their peers… and then the cruelty: once they understand, it’s a long lag until the “modify their behavior accordingly” piece becomes doable.
So with him, we spent so much time and energy getting him to comprehend what he does not yet have the tools to change. Great, let’s celebrate the milestone of how he totally gets that his behavior drives people away! Shall we do it before or after it gets worse because the realization only exacerbates things? Let me know so that I can pencil it into my schedule!
So he gets it. He gets that he would like to have more friends. He gets why he doesn’t have more friends. How many more times, and for how many years, does my heart get to crack until he gets how to change that? How many times will I, against my will, wish he could just get it a little less, discover blissful ignorance, instead?
Here’s hoping SuperAspieDoc lives up to her name.
That Doc sounds like a keeper. I’m impressed with how expressive your son seems. I dream of my (not really diagnosed as anything) son being able to talk about his needs like that. Hang in there…it’s a single step, but it seems like a step forward.
Oh I hope so! It all sounds very promising. :)
Thank you for your honesty. This brought tears to my eyes and even though I do not like to hug, I would like to be able to give you a hug right now. xoxo
I cried… Bless his little heart. And bless yours…
Oh! But! Isn’t it wonderful that he stated it as a positive goal? I mean, it wasn’t ‘I don’t want to be bad anymore’ but rather that there was something real, something good that he DID want? I mean, it could be that I find it so shattering that he views himself as that I really, really want that glass to be half-full (and then some), but it does seem, at least to me, that he can see that things can be different and there’s a very good reason to want that.
So glad that the new Doc sounds so good – and it sounds like she was ENGAGED and that she took things at Monkey’s pace which is fabulous (and oh-so-rare these days). Hope it’s a long and very friend-fruitful relationship.
I am impressed with SuperAspieDoc and I really really hope that working with her gives Monkey all the tools he needs to make it easier for him.
heh. above should read ‘he views himself as *bad*.’ Apparently pointy brackets are Evil and Shall Not Be Used for Emphasis no Matter What.
Wow! She sounds awesome I am so glad you have found her. And Monkey? So heartbreaking to see, and yet not be able to do. I’m always amazed by how many “experts” are so dead wrong on spectrum folks, making blanket statements, lumping them all in one box.
I have observed that some Aspies are actually MORE sensitive to emotions, and not insensitive as they are often painted to be. So sensitive, in fact, that they need to shut down to keep from being overwhelmed, which is why they can appear “cold.”
Anyway, I know Monkey will get through all this, will get “there” – find his community of friends, learn how to be a better friend and not drive people away. I also know that between now and then your heart will break a thousand times for him. Hugs. And much hope.
ok … enough with the making me cry thing… i had a very bad aspie day myself (with both kids)… superaspiedoc sounds amazing!
Mama, this just goes to show how very powerful YOU are. YOU spent forever looking for the right doctor, YOU didn’t settle for less. YOU made sure your son got the help he needed. YOU got the two of you to that room with that doctor.
There is a cause and effect there that I hope you see as clearly as I do.
So while it is heartbreaking, it is groundbreaking. And on the very first visit too! Here’s to many more groundbreaking successes, as small as they may be.
Good on you, Mir, for finding SuperAspieDoc. I hope she’s every bit as great as she seems!
I’m so relieved to know that SuperAspieDoc is a keeper. I don’t know much about it but there is a character on my favorite show, Parenthood, that has Asperbeger (I know I didn’t spell that right) but it’s very enlightening because I don’t think alot of people understand it, myself included. This show brings it to light and helps people understand the behavior. I hope she lives up to her name as well. Have a great weekend, Mir!
“Whereâ€™s the book about the kid who loves everyone and wants nothing more than to be liked and accepted, but gets overwhelmed by life so often that he melts down regularly and then the other kids start avoiding him, and he knows EXACTLY why itâ€™s happening but feels powerless to change it?”
My Aspie is just like this. Maybe, in the end, it isn’t so depressing. I hope that is the truth and will hold it close and fight for it with every breath because my Aspie is really awesome, quirks, meltdowns, anxiety, rigidity and all. I love his black and white world that he has interposed onto mine.
Thank you for your thoughts, thank you for your insights, but mostly, thank you for making me see that I am not alone.
Holy smokes! That is one great professional in my humble opinion. I wish there was a way for Monkey to know that he is one of the most popular kids around on the Internet. It probably wouldn’t help in the day to day, I know, but man are there a lot of people sending him (and you!) virtual hugs
A. I love SuperAspieDoc. She gets him. And that’s great.
B. I know how much that must have hurt. But I say what follows not because I don’t think you have a right to that hurt (you do, he does), but because it’s just not true that not getting it = bliss. N still doesn’t get that he’s “different” (his behaviors are more of the grow-silent-and-disappear type, so there’s less CRASH BOOM BANG for him to learn from) and not only couldn’t describe what he does that keeps other kids away, but might not even realize that any of it’s about HIM. But he’s still often lonely and sad and miserable…and not being able to talk about it because there’s no vocabulary with which to do so makes it…I was going to say worse, but that’s from my point of view, where I wish for the ability to have the heartbreaking conversation you had. Let’s say instead that having no vocabulary with which to talk about it and no recognition of what “it” is does not make anyone any happier.
C. I just realized that my last comment basically could be summed up as: Lose, lose! Which isn’t true. But after your heart stops aching so much, realize that he’s moving forward now, even if there are occasionally backward steps as you go. And because this is his goal, his WANT, he’s going to participate fully, do whatever he can. That makes me so hopeful for him, so convinced this story has a really happy ending. I’ll hold onto that hope for you until you’re ready for it…though I think we both know you’ve already got plenty of it.
I agree with Kyre! REALIZE that. And love it. :) You are doing a great job, even though sometimes it does not feel like it.
The therapist sounds great. Monkey sounds like a sweet kid. It tugged on my heart strings to hear him say that he wants more friends.
My experience has been that first impressions with therapists are usually pretty accurate. This gal gets Monkey. That is huge and it isn’t going to change. Hooray for a good session and prayers for many more. He will get there–in his own way and his own time–but he will get there. How could he not with the family he has?
Here’s to good sessions ahead. :) (hug) (ps we are overdue for a walkie talkie!)
Sounds like a wonderful doctor. Here’s to looking forward to many more visits with her. It also sounds like she’d be a great doctor for you! Maybe Aspie Mom’s need special Aspie Therapists too…
Yay for the doctor! And how you managed to not dissolve into a sobbing puddle speaks to your strength.
She sounds like a good therapist! I want to be like her when I grow up.
I want SuperAspieDoc. I have thus far had no luck even finding anyone with “availability” for my daughter. And oh my word, does so much of what you’ve said ring so many bells in my head, because my daughter is the same way – she loves people, she wants friends, she just has trouble keeping friends. She distances herself, yet sees it as them not wanting to play with her. If she can’t make the rules and dictate how things are done, she sees it as that they are all mad at her and won’t let her play.
I’m glad you and Monkey found SuperAspieDoc! Can you ask her if she has a clone in Colorado?
Rarely is anything worth having easy to get. No doubt Monkey has a tremendous amount of work ahead of him, and no doubt that it sucks, but how wonderful to hear about this gigantic step forward. What a beautiful goal he expressed today! And it sounds to me like SuperAspieDoc may be just the friend he’s looking for. Kudos for finding her, hugs for the sad, prayers coming your way for continued hope and progress. And it’s Friday, so break out the wine. :)
I always hate your doctors. I love this one so much. Go, Monkey. Go, Doctor. And go, Mir.
If SuperAspieDoc has any friends in my area as good as her who take Tricare, let me know. Ryan’s in the same boat, friend-wise. He has one good friend, and maybe one or two other boys that will tolerate him enough sometimes, but that’s about it.
Oh, I loved your post, and I totally agree with comment #10 – Kyre. You are an amazing advocate for your kids!! I have similar concerns for my “typical” kid. She is so competative and selfish sometimes that I wonder why her friends still tolerate her! She rotates friends in and out so frequently that I wonder …. and your posts ALWAYS help me to explain (and give me the language and words – YES I STEAL THEM) and talk to her about friendship and kindness. Thank you for your sharing. Your writing helps in more ways than you can ever imagine.
Heartbreaking. Hugs Mir to you and Monkey. The new doc sounds great. Progress is good but still hard in different ways, thanks for sharing. Glad you’ve got lots of support to help you pick up the pieces of your heart and just keep swimming …
Monkey and my grandson are a like, but Burp doesn’t see the correlation yet. He has how ever begun to momentarily take himself out of the picture… chill out… and then go back in. When you find that book. Let me know.
I just tell me son he is the “bravest” kid of all. But then I tell my mom friends that have kids on the spectrum that they are the bravest moms of all!
Have you guys read _Be Different_ by John Elder Robison? He wrote an earlier book about his life called _Look Me In the Eye_. It has some very practical advice for how to get along with people better as well as being a memoir, and the author has Asperger’s himself. I’m not saying this is a magical fix or anything, but reading it might help Monkey feel less alone in his problems and therefore less ‘bad’.
I’m glad that she was so good with Monkey. And mom :)
I don’t comment much lately but read faithfully and wanted to let you know I think of you often, and am glad about this new therapist.
I’m am completely serious when I say that YOU should write that book. You give such a voice to these challenges that the drs who write the books don’t address. Your perspectives on raising good kids with difficulties helps me all the time.
My daughter babysits a sweet Aspie boy (13 years old) just down the street. A couple of years ago his mom came over asking for my boys to come play, saying Alex was slowly realizing that his friends had outgrown him and were pulling away. I guess it was at about 10 that he saw them leaving him. Broke my heart.
My youngest is his age. He heads over periodically to hang out, but Alex is often unavailable for one reason or another. They play when they can.
The brightest spot (I see all of this through my children’s eyes), is my daughter’s time spent with him. He comes over occasionally, if she’s been sick and couldn’t sit, to tell her what’s happened in her absence. Catch her up on Biggest Loser (they watch and enjoy it together, and we don’t watch TV here). The two genuinely enjoy each other’s company. It’s nice to see my daughter’s eyes light up when she talks about him, like with any other friend.
I guess what I’m saying is, friends don’t always come in conventional packages. Hope doesn’t always appear the way we expect it to. And I’m glad for y’all and the new doctor. :)
LOVE her. I can see my now 7-year-old’s tween/teen years being a lot like this, and I hope I can find him someone to help that’s as great as this lady sounds.
Sounds like Monkey now has a therapist who’s going to help him get where he needs to go. I’m rooting for all of you.
Two friends isn’t bad. As long as they’re GOOD two friends. Two really good friends is miles better than fifteen so-so friends.
Little Bird & Kyre–yes, what they said Mir!
I know many people, not “on the spectrum” who could not articulate the way Monkey just did. I’m not kidding! I think it’s worth mentioning to Monkey, that a lot of kids in their teens feel exactly like him in the friends arena. They don’t know why they don’t have more/better friends they just know they’ve been put into a specific group of kids & don’t “fit in.” That many not make him feel better, or resolve his issues, but that is the truth. There’s a reason “Breakfast Club” was the movie for a generation.
Lastly, kudos to you. You’re obviously doing a stand up job of raising your kids. These years are filled w/lots of angst no matter what you do. Your kids seem to be navigating them well. It many not always seem like it, but I suspect, when you get the end of this part of your journey the memories that they will recall will happy ones; knowing how much they were loved and cared for. (My heart broke for Monkey too. (((Hugs))) for you all.)
Oh man, I would have LOST it right there. How completely heartbreaking to hear Monkey vocalize what he really, really wants. And, its something you can’t give him, no matter how hard you try. Here’s hoping the Super doc has some super ways of helping Monkey reach his goals.
So, I’m thinking that maybe Monkey’s met his 3rd friend? Some friends are the play with kind, and some are the confidant, trust, talk to kind.
“Whereâ€™s the book about the kid who loves everyone and wants nothing more than to be liked and accepted, but gets overwhelmed by life so often that he melts down regularly and then the other kids start avoiding him”
OH OH OH – my heart is breaking because I can relate! :( :( :(
My 4.5 year old is on the spectrum, PDD-NOS, SID & ADHD. It’s sooo hard. We actually just started a new service offered through our school district (in NY) called ABA therapy (Applied Behavioral Analysis), have you heard of it? They break down problem areas (socialization skills is our number 1 issue right now, T is highly verbal but has trouble keeping friends when they notice he’s a little “different”).
He actually just started this past week as well, very exciting to have hope again! Big hugs Mir, to you and to Monkey. And here’s hoping that our super-docs live up to their names! xo
Read about the ‘intense world’ theory of autism. Flies in the face of the “kids on the spectrum want to be alone and have no empathy” nonsense.
I think Super Aspie Doc, is already living up to her name.
What a tear-jerker. My non-aspie four year old came home the other day, and proclaimed that her friends wouldn’t play with her at pre-school. My heart broke for her. I can’t imagine how much harder it must be for you, and for monkey, to struggle with the “grey”.
I think you’re off to a stellar start… and you’ve found someone who can really help navigate. Amen. And… I am amazed at Monkey’s clear grasp on the situation. From where I sit, it looks like you’ve cleared a monster hurdle. Good start.
My 19 and 13 yo aspies are right there with your son. As I started reading your blog today, my daughter was telling me how much my 19yo wants friends, but then when he spends time with a potential friend, he doesn’t actually interact with him. They wind up doing two different things. Maybe in the same room. Maybe not. My 13yo is desperate for a friend or two–to the point that he’s taken to climbing a neighbor’s tree and waiting for their children to come outside. That just makes the neighborhood kids (and parents) think he’s weird and creepy, and we have to forbid him from doing that anymore. He’s so sad. It just breaks my heart. When he does try to join a group activity, he always melts down within a few minutes, so the other kids avoid him because of that too. I don’t know where I’m going with this, but I can completely relate to what it’s like to parent one of these kids. It’s hard.
Oh, I am so happy for all of you! The only remaining “big picture” thing now is a gooddoc for Chickie’s mysterious rash.
Congrats on finally getting in with Super Aspie Doc! This will lead good places.
Wow, this is one heck of a doctor. I hope it continues to go so well!
I feel like I ask everyday. why does it all have to be so hard?
I hope things get easy for you, really, really soon.
Your post inspired me to remind my own kids to be open minded about friends and that everyone deserves a second chance.
Your posts about Monkey led me on my family’s own path of diagnosing our daughter’s sensory issues. It changed our lives to finally be able to “get it” – even the really shitty parts (like how I still, 4 years later, yell first when she seems to be disobedient, only to hear in hindsight, the OT explaining that she -daughter- is compelled to finish things, just the way her brain works, despite being told to move along). I have you to thank.
I started writing a reply when this post first hit, but got sidetracked. Suffice to say, I think that your wise friend Kyre was completely right. And, that, that book may as yet be unpublished, but the manuscript has a huge underground following – evidenced by the emerging Super Aspie Docs/Therapists/Insert support occupation here of the world.
I know that the days are many when all we can see are the long roads ahead for our challenged kiddos – but stories like this give me hope: http://www.today.colostate.edu/story.aspx? id=5647&sms_ss=twitter&at_xt=4db994106a0c2262,0
A grown up aspie who plays ball – comes to the school at which renowned Autism spokeswoman Dr. Temple Grandin, happens to teach, and ppl like Dr. Rosen (one of my favorite professors in my entire undergraduate career) who not only have compassion, but the experience to help this young man get a successful start to his adult life.
Hang in there, Mir and keep the faith.
I’m just thrilled that you didn’t have to leave yet another doctor’s office grinding your teeth! And being so experienced with Aspies, she won’t have a spaz and dump him if he sees her when he’s in a foul mood sometime, she knows it’s all part of the process.
Oh, man. Sweet, sweet Monkey.
I am so happy that this new doctor seems to understand Monkey and what he needs. I hope for SO many good things for all of you.
Sounds like you found a gem of a doctor.
I am consistently frustrated by the “experts” of autism. I don’t think they’ve ever spoken to a single autistic. It’s scary, because being on the spectrum means in high stress situations I have extra trouble communicating, and that’s the point where I could end up being under control of someone who does exactly the wrong thing.
You sound like you are doing an amazing job by him, so I do not direct this at you, but my heart aches for all of the parents (and other adults) who treat kids on the spectrum by following the standard advice. Most of it is abusive, in terms of pain caused.
My son is 27 years old. When he was in 4th grade, he was diagnosed with ADD. The year before that, he came home from school crying. When I asked him what was wrong, he told me “Mom, I just want kids not to run away from me when I walk up to them.” Split right in two, my heart was. This month, as a young man, he is embarking on a journey to find out if he falls somewhere on the Autism spectrum. I am so proud of him and who he has become. I feel for you all.
I hope SuperAspieDoc lives up to her name too. As the mom of 2 kids on the spectrum, one an Aspie, I could feel your post. We’re going through the same thing, we just haven’t reached the understanding of they why other kids don’t always like my son yet.
She does sound like a keeper! Monkey sounds like he’s making progress, too, in looking at himself in a little different way.
Awww… give monkey a hug for me. I hope this doc is “the one”.
Did it make you ask yourself what the ONE thing is you would want for him? And for you? I feel like parents often don’t find the time or daring to ask that question.
I’ve been trying to dream a little bigger and then break it into steps that we can practice.
What does it take to be a good friend? My four year old helped with this list
-sharing my things
-inviting someone to play/talk
-being nice, doing things to cheer them up
-being silly with them
Not such a bad list.
Your post has inspired us to practice these skills. Going to give a marble for each. Then when the jar is full the boys can have a sleep over playdate. It helps to have smaller steps.
I am so glad that Monkey got to see the new therapist. Sounds like it was a really good first session. And thank you for giving voice to the truth that Aspies very often want friends and have very strong feelings about it. :)
wow. I’m seeing a bit of light at the end of a tunnel. What a lovely way of putting this into such meaningful words. And, Anna, I’ve copied your list to share with my kids. Thanks to both of you.