Life With Autism
Thank the sweet Lord and Butter that I finally found someone to fill in for me so that I can listen to John C. Mayer all day long return to my magic closet of diamonds and free whore pants. Or really just catch up on everything that I’ve allowed to slip since I’ve been living at the doctor’s office all week.
Also: Band Back Together is making me pee myself with it’s awesomeness.
If I owe you something, I’m sorry. I’ll get to it as soon as I can.
If you behave like I owe you something: I’m not your bitch.
So thanks, Stark. Raving. Mad. Mommy. Now I can spend my day doodling Aunt Becky hearts John C. Mayer in big puffy pink hearts. Er…blinging out my toilet.
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It should be clear, up front, that I don’t speak for the autism community as a whole. I only know our experience, and I only speak for myself. My son is verbal, so he speaks for himself. However, most of what he has to say revolves around Lego Star Wars, so if you want to know more about that, we’re all set.
I recently had a conversation with my four children about what they want to be when they grow up. The Peanut Butter Kid, who is six, announced that when she grows up, she wants to be a female boxer, or a doctor, or possibly both. That’s an excellent career choice because if you keep beating people up, you never run out of patients to treat. It’s genius, really. Cookie, one of my nine-year-old twins, wants to be a mom, and a teacher, and volunteer at an animal shelter if she has time. Little Dude wants to be a firefighter. I love that he is just like every other four-year-old boy sometimes. But then he started explaining, in great detail, what he loves about fire trucks, and how the ladders work, and then I remembered all the ways he is not like other four-year-old boys.
When the Pork Lo Maniac (my other nine-year-old) grows up, she plans to be a famous scientist who wears a squeaky motorcycle jacket and owns many pets. She doesn’t want to ride a motorcycle, she just likes the jackets. And she thinks that jackets that make squeaky sounds are the coolest fashion items ever. She thinks she may invent a motorcycle with some safety improvements, like seatbelts and walls. I asked if that was actually a car, but she said it will be much cooler than a car. Obviously. I think what she really wants is to be driven around in a Popemobile with throngs of adoring fans thanking her for her scientific achievements with offerings of pork lo mein.
I’ve been hanging out a lot with the Peanut Butter Kid, who’s on homebound schooling with some tummy troubles. The other day, she commented that if the Pork Lo Maniac grows up to be a scientist, she can invent a cure for Asperger Syndrome. It was a beautiful thought. She cares about her brother, and sees that he struggles with many things. Also, she whole-heartedly believes that her older sister can do anything.
I told her that I wasn’t sure if I would “cure” Little Dude, even if I could. Sure, some things would be easier for him (and, let’s face it, for me), but then he probably wouldn’t be so freaking awesome at Lego Star Wars. And maybe he wouldn’t be doing multiplication at age four. Maybe when Little Dude is grown up, his Lego Star Wars and math abilities will converge into engineering skills that will make a difference in the world. I wouldn’t take away his Asperger if it meant taking away all great things about him, too.
“We love him the way he is,” I said. This has become my mantra. I say it to his teachers, I say it to his sisters, I say it to strangers. “We don’t want to change who he is, we just want to help him not be quite so stressed out by the world around him.”
It’s true. Our daughters all have varying degrees of anxiety, and we don’t want to change who they are, either. They are also empathetic and sensitive and kind. We just need them to be able to get through the day. So we work on coping strategies.
The PBK’s thought weighed on my mind for days afterward, though. Little Dude’s Asperger isn’t as severe as that of many Aspies. His struggles are also much less than those of people with more severe or more classical forms of autism. Little Dude has always been verbal. It’s just different. So I think it’s probably easier for me to say I wouldn’t cure him if I could.
I see Facebook status posts sometimes that say things along the lines of “people with autism aren’t looking for a cure, they’re looking for acceptance.” I get that. All people deserve to feel accepted for who they are. However, I have a feeling that there’s probably scores of parents with young children on the spectrum — nonverbal kids that seem closed off from the world — who are thinking I would cure it if I could.
I find it a little disturbing that there’s all this pressure to welcome autism with open arms. Of course you love your child. Of course you wouldn’t trade him in for anything. But I think it needs to be okay to admit that you wish your child didn’t have to struggle. I think it needs to be okay for people with autism spectrum disorders to say, “I’m totally cool with who I am, but sometimes it sucks monkey balls to have to work this hard all. the. time. to deal with neurotypical world.”
Example: Little Dude has a motor planning deficit. He needs to be taught things explicitly that seem to be intuitive to other kids. When his preschool teacher says to line up to go to the library, he lines up. And then stands there because he doesn’t know that the next thing to do is walk forward. When the kid behind him yells “Go!” and gives him a shove, it hurts him deeply. And it stabs me in the heart. And makes me want to punch the other kid in the throat, which is totally inappropriate, I know.
If I were June Cleaver, I would be more chipper about our whole situation, I’m sure. I’d be all, “Gee, Ward, don’t you think you were a little hard on the Beav tonight? You know, he’s been in ABA Therapy all day. And we’re still working on getting his medication right.”
And then I would smile and fetch Ward a martini. And then I would go in the kitchen and knock back a Valium with a gin chaser. Or maybe that’s Mad Men I’m thinking of.
Ultimately, it doesn’t matter whether I would cure it if I could. I can’t.
For now, I know that Little Dude is at his happiest when I am at my most accepting. I do accept him, with open arms and all my heart. There are things about his Asperger that are both awesome and hilarious. Like when he observes that an old guy at Target looks just like Emperor Palpatine.
But I wish some things weren’t so hard.
I love my kids and accept them, but if I could make some things a little easier for them, a little less scary, I’d do it in a heartbeat. I guess ultimately, that’s what all the therapy and transitional playgroups and help that I’m getting is all about. Helping them find it not so hard and confusing.
Thank you for sharing your story. I love how you are so honest and accepting. What a good role model you are for your kids!
Thank you for sharing your story. I love how you are so honest and accepting. What a good role model you are for your kids!
Oh, honey, if you were June Cleaver, you’d be dead right about now!
That’s about all I have time for because the morning rush is about to begin…10 minutes earlier than usual because my son apparently just knocked over something huge and heavy upstairs and woke everyone up.
Great post. xo!
Bahahahahahaha! True that. I wrote this before Barbara Billingsley died. I {heart} her.
You and I are so on the same page about this stuff, always nice to hear from someone sensible (and, as we all know, the definition of “sensible” = someone who agrees with ME.)
My son Jacob is also on the higher functioning side of the spectrum, but definitely NOT Aspergers. In fact I have joking called him the “anti-Aspergers” kid, because language processing is his main deficit and he wants to engage with people all the time and LOVES crowds and chaos.
This said, I have written many times, in both my blog and comments on many other people’s posts, that I am absolutely all for autism pride and embracing our children for who they are and looking for the gifts that come from having “different” brains. However, if I could “fix” Jacob’s language processing disorder, so that he could communicate more easily with us and take away his tremendous frustration at not UNDERSTANDING the world around him? I would so do it in a nanosecond. This would not change the core of who he is. It would allow him to more easily share that wonderful self with his family and the world. It would allow him to have a friend, that thing he so desperately wants, that is still just out of his reach right now.
Anyway, I mainly want to say love this post and agree with everything you said in it. Thanks, oh sensible one. (And thanks to Aunt Becky for inviting you here)
I hear you. What we are focused on is not so much “curing” him, as making his experience in the world less stressful.
I invite all kinds of people here. Hint, hint.
Hello, I followed you over here. It’s not stalking, though, I swear.
Anyhoo, have you read Elizabeth Moon’s The Speed Of Dark? It takes place in the near future, when Aspie kids/adults have found their niche in society (Moon’s son is on the spectrum), but then someone DOES find a cure. And the question is, for adult Aspies, do you take it? Will it change who you are and who/what you love? Very compelling.
I agree with you on all of the above. If I could cure ONE thing about my kid, it would be his social anxiety. If I could cure TWO things, it would be his social anxiety and his dyspraxia. We had the same issues with lining up at school! In fact, I wrote specific instructions to his teachers in elementary and middle school about how to handle lining up with the boy. (He can’t be in front, because he doesn’t know where to go. He can’t be at the end, because he won’t follow along and will get lost. He needs to be in the middle with either KIND CHILDREN on either side who know how to GENTLY keep him in line, or with a teacher beside him. Yes, I have actually sent these instructions to school. Repeatedly.)
So yeah.
It’s really interesting and educational to hear about autism from someone who lives with it in this way. Thanks for this post.
Autism is not an issue I have to deal with personally, but my children have been exposed to others with the disorder (not trying to offend but I am not sure what else to call it). The number one rule with my kids is KEEP YOUR HANDS OFF OTHERS! You are a better person then I am because if I saw ANYONE, child or adult push one of my kids I would have lost it! I would have verbally beaten the child and probably attacked the teacher for letting it happen. My hubby says I have no diplomacy and he is right. Life is too short for bullshit and you can’t just stand there and take it.
Thank you for being open about Autism, I’m sure we can all learn a lot from you, Good Luck.
I punch them in the throat WITH MY MIND. In fact, on my blog we refer to idiots as Mind Punches.
but did the old guy at target look like the human emperor palpatine, or the lego star wars emperor palpatine?
sorry, i always have to class up a joint.
not being a human mommy, i can’t really talk about having special needs kids. i do have special needs cats, which is totally not the same thing because most people think cats are disposable. i’ve been asked numerous times why i don’t just get rid of the cat(s), and i’m like, ‘uh, i LOVE them’.
i know it’s not the SAME as having a child who has special needs. but to me, it’s similar – my cats are my children. would i fix them if i could? sometimes i think i would – i’d like them all to be healthy. but sometimes, that ‘special need’ is what makes them so special. i’ve known autistic kids who are non-verbal, and how they struggle to participate in the world around them. i can understand wanting to cure that, but i can appreciate how their struggles make them terrifically special people.
i guess the practical upshot of this is that i can see it from both sides. thanks for the post – i think it brings a lot of ideas to the surface and gives us all something to think about.
We also have a “special needs” cat. She’s deaf and has related vestibular balance issues. We love her the way she is, too. 🙂
I had a cat who was allergic to herself and had cat-OCD and would suck her own tail. She was the best cat ever.
Bwahahaha. That cat sounds fucking awesome.
Dear god that’s funny. Allergic to HERSELF! HAHAHAHA!
I am Mom to two aspies (12 & 14) and am also married to one. I come down firmly on the side of loving them the way they are, but also wishing things could be easier.
We didn’t realize my husband had Aspergers until our oldest son was diagnosed. Hubby says that reading the literature at that time was like seeing his childhood playing out in front of him — instant recognition. That doesn’t mean it’s been any easier dealing with how his aspie tendencies affect our relationship, though. My heart breaks imagining my boys going through the same relationship struggles as adults.
So, yeah, mixed feelings.
No offence, but in my humble opinion Autism sucks. I have a ten year old “typical” son who rocks my world. I also have a ten year old cousin who also rocks my world and also has autism. He is not very verbal to his immediate family and almost no sounds around anyone else. He still wears diapers. He cannot eat 90% of the foods out there because of his sensitive mouth. He has a hard time “getting” emotions. He cried for the first time this year in sympathy to someone else’s pain. It sucks, especially when we have an example of how he could have been had he not been stuck with this suckiness. That being said the changes he has brought to our family and the lessons he has taught us are PRICELESS and I would not trade that for anything. It has led his mom to become an educator for other children with struggles like his and therefore she is able to impact and love on hundreds or even thousands of kids and their parents. It make me want to run up to any child with autism and their parents and hug the crap out of them – not sure if that is a good thing. Thanks for the awesome post and for keepin it real.
Thanks for this response. I just feel like there’s so much pressure to be all “yay, Autism” and it needs to be okay to say, hey, some of this sucks.
I’ve said it a million times…..this is what I love about the blogging world. I love reading such differing points of view. And I love that they’re presented in a respectful way….not in a “Hey you’re an effing idiot if you think autism doesn’t BLOW” kind of way. I’m sure that every parent who is dealing with autism (even if it’s a very mild case) has thought, at one time or another, that it totally sucks.
*Hugs* to all of you who deal with this, day in and day out.
I hear ya sista. My kiddo deals with Tourettes. Not quite Autism, but neutological none-the-less. He will always have to explain himself to others and that breaks my heart. I dread the day he could be bullied for something he can’t control. But, we are very matter of fact about his tics. Love him for who he is. And don’t give the meanies the time of day. We all have our dragons to slay.
This post came at a great time for me. While I’m not a mommy, I just started working as an attendant/respite worker with a little boy with autism. He’s amazing, is considered high fuctioning, and 95% of the time the best. The other 5% he’s a total shit… just like other 8 year olds. This is probably one of the hardest jobs I’ve ever had. In the past four days, I’ve taken 3 rolls of scotch tape to the face, gotten hit multiple times, threatened, bitten, and told that I’m a “VERY BAD WO-MAN!!” And yet? I go back, day after day, because I know that I’m making a difference in this kid’s life, and more importantly, he’s making a difference in mine. I help do everything from getting him in the bathtub and ready for bed, to reminding him to use the potty, and some days I clean up poo and some days I don’t. Some days I come home and cry like a 5 year old with a skinned knee, because no matter how much I tell myself that those horrible things he says he doesn’t mean, it still hurts. Will I get used to it? Probably. Do I sometimes wish I could just smack him silly when he acts out and is being horrid? OF COURSE! But, like starkravingmommy, I just do it in my head, just like I imagine anyone else with kids would do. And then he makes up for being a shit by crawling into my lap for hugs (something very rare for this kid), or by just being a little easier to deal with. It’s tough, and I only do it for a few hours a day. I can’t imagine doing it 24/7, but I know that one day? This kid? He’s going to do something great. And that? really makes it worth it.
THANK YOU for doing the job that you do. I believe that respite workers have a special calling.
Thank you lady.
Thanks for sharing your thoughts and family experience. My nephew is on the spectrum and his little sis worships him like a rockstar. But, at 3 she is now old enough to understand that Big Brother is different from other kids but he’s special because mommy said “he’s just made that way”. Sometimes I worry about all 4 of them, but they accept and love Big Brother just the way he is and hopefully the rest of the world will too.
I’ve read way too many autism blogs (and comment threads on autism blogs) since my son was diagnosed three years ago, and have discovered that there are many parents who would, in fact, “trade in” their autistic child if they could. They’ll do anything to separate the autism from their child, and try every quack “cure” on (or off!) the market, including dangerous/useless stuff like OSR #1.
I don’t feel so much that I’m pressured to “welcome autism with open arms,” but I do feel strongly encouraged to accept that my son is autistic–it’s who he is–and not that autism somehow swept in and took him from me. I know my autistic son will struggle in ways other kids won’t struggle. But there are some things that are actually easier for him because of his autism. Some of my favorite things about him are the autistic things.
There are lots of difficult, challenged, bullied, lonely, frustrated, friendless kids out there who don’t have Asperger’s. But when our Asperger kids are difficult, challenged, bullied, lonely, frustrated, or friendless, we attribute it to Asperger’s. I constantly remind myself that everybody on this earth is struggling in some way. Life sucks and then you die, as they say.
That’s exactly how I feel about autism. My son is autistic and my daughter is special needs, too. I don’t want them to struggle. Hell, I don’t want ANYONE to struggle, but that’s nothing I can change. I don’t have a magic wand, so I don’t want to engage in a debate about a “cure” because clearly, there’s nothing I can do. I don’t hold a key.
The last time I brought this up, it turned into a debate about curing vs. not curing autism which isn’t really something I care to debate. I don’t have an answer. I won’t have an answer. As much as I pretend to play God, I’m not.
Children struggle. We all struggle. I wish it was easier for all of us sometimes. But our struggles define who we are.
You hit the nail on the head. My best friend has a child with Asperger’s and of course she loves him just how he is. But it breaks her heart to see him struggle socially. How can you NOT feel torn by both feelings?
My son has autism, too, and that’s precisely it. But I don’t think it’s strictly an autism thing. No one wants to see their child suffer for any reason.
Definitely. One of my 9-year-olds has terrible anxiety and is now on two different medications for it. She’s also an incredibly kind and empathetic person. I don’t want to change her personality, I just want her to be able to get through the day. It breaks my heart when she suffers.
Thank you for this. Beautifully said.
I dont know anyone what has Autism. I just have some questions I have a friend who has a stepson who thinks may have a form of Autism.
What are some of the things that you look for? Can you give me some info?
A basic place to start would be WebMD http://www.webmd.com/brain/autism/autism-symptoms
My son has Asperger Syndrome, which is on the autism spectrum, but differs in several ways from “classic” autism. The biggest difference is that he is HIGHLY verbal.
For more info about autism, check out Autism Speaks http://www.autismspeaks.org/be_informed.php
For more information specific to Asperger Syndrome, you can go to OASIS at http://www.aspergersyndrome.org/Articles/What-is-Asperger-Syndrome-.aspx
Best wishes.
****Of course you love your child. Of course you wouldn’t trade him in for anything. But I think it needs to be okay to admit that you wish your child didn’t have to struggle. I think it needs to be okay for people with autism spectrum disorders to say, “I’m totally cool with who I am, but sometimes it sucks monkey balls to have to work this hard all. the. time. to deal with neurotypical world.”****
Thank you so much for putting into words, and funny ones most of the time, what so many of us feel! I love my son with my whole heart, he is my world, but I just wish that it wasn’t so stinking hard for him to deal with the world around him.
I couldn’t have said it any better!
My son hasn’t always been verbal, but he is now. I remember the first time it registered to me that he used his speech in the correct way I almost did a cartwheel. But it was 4am and he had just told me his throat hurt hence the wailing and there was no time for celebration just medicine and hugs.
I agree –I love my son, his quirks, his idiosyncracies but honestly if I could help make his trip through life easier I would.
I love this post.. It is honest and funny. I am glad that you have the ability to see things the way that you see them. I have only recently started followiing you and I must say I am enjoying it so.
I’ve only ever read your blog this once to be honest. I found you through the Mompetition videos. I subscribed because I wanted to read, but I just had not gotten around to it until today.
My youngest son, Draven, has what you would call “classic autism”. He is mostly non-verbal (but he’s slowly talking more in the past 18 months), he is nearly 6 and does not toilet by himself (he is happy to sit in a wet pull up, he doesn’t care) and he has some social issues. Other than that, he is a pretty typical 5.5 year old…. other than the fact that he stimms. (He gets “flappy” when he’s happy. lol) I felt compelled to comment today because I really identified with the comment you made, ”We don’t want to change who he is, we just want to help him not be quite so stressed out by the world around him.”…… My husband and I think that our son is better entertainment than cable. We love his personality and wouldn’t change it for the world and we know that he is like he is because of his autism. However, I am torn…. because I look at my older son and think, “I wonder what Draven would be like if he didn’t have autism.” When I initially got the diagnosis (even though I knew for over a year before hand) I was crushed, my hopes and dreams for my little boy were shattered. He has violent melt-downs and for a 42lb child, he is VERY strong. I’m afraid of what he will be like when he weighs 142lbs and he has a melt-down. So although I wouldn’t change about 80% of his personality… there’s that 20% that I would. We are working on treatments for him but we know that he probably won’t ever be “fully cured” and we are okay with that.
Thank you for being so open and honest about this subject.
Ohhhhh I worry about the meltdowns too. I’m hopeful that the therapies we’re doing now will help him to be less stressed in the future, and better able to cope with stress, and thus prevent 142-pound meltdowns.
I was talking to a woman who’s son is an adult and she said once her son was better able to communicate, the melt-downs stopped. He still gets angry and kind of slams stuff around but he doesn’t get the “throwing down on the floor, kicking and screaming” type of melt-downs… so my husband and I are now quite hopeful, that if we can get our son talking, the melt-downs will lessen. 🙂
As always, I love SRMM’s posts…and now have a new blog to obsess over – I mean, stalk – I mean follow!
I am a mommy of a typical 4 year old and am pregnant with my second, due in March…I am also a special needs educator, and have been for 12 years, in varying capacities. I feel lucky to have been surrounded by special needs most of my life (my BFF since I was 10 had an older brother with Down’s). My first teaching experience was in a school solely for kids on the spectrum, and I was the teacher in the classroom that wad most behaviorally challenged…but I was hooked!!! The injuries were countless that first year (for me) but so were the hugs!!! I absolutley fell in love with this population – I truly believe that my first teaching experience at this school has made me into the woman I am today – as a mommy, educator, wife – I am a richer person because of EVERY student I have had the privilege of meeting along the way!
I have also done much respite, with spectrum kids and other special needs kids, so I have become close with different families and see how difficult it is to be a parent of some of these individuals…but I have heard so many parents echo your sentiment – they are not seekig a cure, just an understanding so that their son/daughter can function and enjoy being a member of this world!
I am typing this on my tiny lunchbreak from my iPod – apologies for weird typos!
Keep up the great work, mamas!!!
It’s nice to meet you! The special needs population is pretty full of the awesome, I agree, and if I were a teacher (I could never be), I would probably go into special needs.
Yay for March Babies! My son is a March boy. He rules.
And nice to “meet” you!!! I really can’t imagine doing anything else – well maybe being a SAHM while sipping umbrella drinks from my beachfront home in Hawaii would be a possibility! But since I live in NE, that possibility will never come to be, I am sure! Hoping for a March baby – due the 1st! Looking forward to keeping up your blog!
OMG, I *just* noticed the tag on this post. I heart you, Aunt Becky.
We had a special needs child too. Now he’s all grown up, out on his own and happy and successful. I remember the hard days, the ARD’s the frustration. But now that’s he’s an adult too, he looks back and is appreciative of everything we did. It’s a great thing. It does get easier-eventually.
It’s so hard sometimes. It really is. The uncertainty is what I struggle most with.
I really know that. I worried for years that he’d wind up OK. But he did. He’s still unattached at 27, which concerns me a little; but he’ll find the right person eventually. I’m not overly religious, but you’ve gotta keep the faith. I’ll keep you in my thoughts kiddo.
Thanks for your honesty in this post. We have a neuropsych appt. for my 6 year old son next week where we’ll get the official, “yup, he’s got Asperger’s” diagnosis. On the one hand, I am more than dreading it. On the other hand, in some ways it will help explain to the world why he is the way he is. I love him dearly and wouldn’t change anything (ok, that’s not completely true…I could more than do without his obsession with trains!), but right now I’m thinking that autism really sucks. Especially when he comes home and says things like, “do the other kids in my class go to birthday parties…because I’ve never been invited to any.” sniff, sniff.
You can come to MY son’s parties. ANY TIME.
Ditto. Our parties are full of trains and legos and obsessions and awesomeness.
Seriously? At SIX his classmates Mom’s are letting their kids exclude another in the class? That’s bullshit, and the Mom’s need to be nut punched.
I’ll punch them in the vagina for that. It’s bullshit.
As the mother of a mystery child, not only would I like to know what “it” is I would like “it” to not exist, it dose, I deal. Thank you.
Here listening. Quiet when I don’t know what to say, but always listening.
Very opportune post for me. I recently found your site and my 2 and a half year old was recently diagnosed with autism but I knew it was coming for some time. I sit here typi this as I watch my son staring at the steps trying to figure out how to get down them, as I try not to help. I agree some of it really sucks, but it still doesn;t change how much we all love him
I caution people not to view their children as their diagnosis. That’s my biggest problem with it all. Yes, it’s good to know what you’re up against. But knowing it doesn’t mean your child is a different person. Does that make sense?
You are an AWESOME mom!.
And by the way, when my daughter was four, she wanted to be a lawyer, then be a cheerleader. What a life goal.
I understand, but my son doesn’t have aspergers he has bipolar. He is almost 14, and with appropriate meds this has been his best year yet. Even so, it’s still very hard. I hope yours gets easier earlier than ours has!! 🙂
I understand, but my son doesn’t have aspergers he has bipolar. He is almost 14, and with appropriate meds this has been his best year yet. Even so, it’s still very hard. I hope yours gets easier earlier than ours has!! 🙂
I really admire all of you Moms whose children struggle with the spectrum, and must admit I agonize about autism a lot. I only have one child who is “neuronormal” (is that the proper term?), but I pray and pray that she is not presented with the challenge of an autistic child. It scares the daylights out of me. It has helped me tremendously to read your blogs and see that these issues can be handled and the personalities of your children are quirky and endearing both. But I guess I would be on the side of finding a cure. I definitely plan to check out the book mentioned above. I hope I haven’t been insensitive. You really do amazing work.
Hoo-boy! You are SO on the money! I have a 13 yo son with high functioning Asperger’s and it IS a challenge! And while I wouldn’t change or cure him for ME, I might try to do it for HIM. We have always, ALWAYS talked about Asperger’s as a gift rather than a curse and we always talk about how every gift comes with a challenge and every challenge with a gift. This has worked well so far, but as he gets older and more aware of how he is different, finding that pony at the bottom of the pile of shit can sometimes be tricky.
I do have to say that I would trade just about anything to spend one day inside my kid’s beautiful brain. All his quirks and twists aside, he is one seriously cool, fun, interesting (sometimes fatiguing!), smart kid and I would love to see how that machine works.
You sound like exactly the right kind of mom for Little Dude – all your kids, really! – and he’s lucky to have someone who can bore down and see him for all his wonder.
well, I’ve just fallen in love with you both (ok I was already in love with SRMM after her Little Bits of Autism post on Hartley’s Life With 3 Boys). I hope you don’t mind my “mom crush” on you for speaking…writing…what I try to say every day. My son, age 4, has high functioning autism and sensory processing disorder. Would I change him? Nope. I love every inch of that tiny little guy, and love the way he sees the world in his very literal way. But would I change how hard the world is for him? Yup, in a heartbeat. and selfishly, would I change how challenging things are for his two brothers living with him? Yup again. Not a cure, but a change.
Thanks for sharing this. Wish I could print this up for the world.
This may be old news to all of you, but personally I love this response to that Holland essay:
http://giftedhomeschoolers.org/articles/hollandresponse.html
I think you can love and accept and still wish there was a cure. I mean, if a child had an autoimmune disorder, for example, it would definitely affect his or her personality but that doesn’t mean you wouldn’t want to cure the disorder. That’s an observation from someone who has taught children on the autism spectrum as well as children with ulcerative colitis, sickle cell anemia and one disorder I have no hope in hell of spelling. Also, bravo to all you handling kids with special challenges.
Thanks for putting into words what I live with every day. My son was diagnosed as autistic 5 years ago. He’s verbal and high in the spectrum, but he struggles every day with what life throws at him. It’s heartbreaking to watch him try to figure out things that his brain can’t wrap itself around. I don’t want a cure–I just want him to have things come a little easier to him, with less heartache and frustration…something that all parents want for their kids. I still struggle with having to adjust my dreams for him and be more realistic with what’s likely given his condition. It’s a day by day kind of thing. Love your blog Aunt Becky!
“I think what she really wants is to be driven around in a Popemobile with throngs of adoring fans thanking her for her scientific achievements with offerings of pork lo mein.”
Hell, I want this! 🙂
I recently found and started following your blog. I love how open you are with your feelings and I love even more that your writing reflects this aspect of you. I don’t have children yet, but I certainly hope that I can view the world the way you do. This line: “I wouldn’t take away his Asperger if it meant taking away all great things about him, too” struck me quite deeply. You’re an awesome Mom. ♥
Thank you for sharing your story. Your children all sound FABULOUS.
I feel like it’s become a matter of training my daughter… about how to ask for things, how to sit in a chair without falling out of it, how to flush a toilet without freaking out. I’m like an animal trainer and she is the stressed out animal in fight or flight mode. Here, kitty kitty, come eat this treat and we’ll talk about how to flush the toilet, lol.
This post hit hard – my son is also on the high-functioning side of the spectrum, the difference is that he’s now 24, trying to find his way in the world while pushing his parents’ help away with both hands. That’s frightening for us, as is the prospect of what his life may be like after we’re gone. Do I love him? absolutely! Would I “cure” him? absolutely! I like to think that curing a disorder doesn’t change person’s essential-ness, any more than curing TB or measles, or providing a wheelchair for someone who can’t walk. Just my 2 cents.
Yes, exactly! I just want life for my son to be less stressful. I want to understand what he’s thinking. Most of all, I want to give him the tools to know how to socialize, and “fit in” (lets face it, kids are douche bags, fitting in is crucial at that age). If he decides when he gets older that he doesn’t, that’s his prerogative. At least he has options. I wouldn’t change him, per say, I would change his ability to communicate more easily.
There are some serious deficits in being NT, it’s just that our society is already set up to minimize them. “Curing” ASDs would be taking the person away and replacing them with an entirely different person, with a different experience of the world, different perspectives, different interests, etc. Now treating things like sensory overload or improving motor skills, that I could get on board with. We provide therapy and treatments to NTs when they have problems and yet we don’t call it “curing NTDs”, now do we? (I say this from the perspective of a young adult with AS, who knows that it gives me some problems but also sees that I don’t have some problems my NT peers have.)
Dearest Mommy, I just stumbled over your website. Dear lord I wish I knew you in person after reading this. I have 5 children. A 16 yo boy slacker, a 13 yo girl moodster, and triplet 8 yo’s, girl drama queen, girl tomboy, and boy who is my “Little Dude”.
Seeing you say you want to punch the boy in the throat did my heart so much good to know I’m not alone. I look forward to reading more posts from you. Thank you for sharing.
I have a Little Dude too. Some days, when he is having an “on” day.I pretend he’s really cure or misdiagnosed. And then he’ll do or say something that’s not ordinary to an 8 year old, and it throws me back to reality. Oh, my son has Asperger. It’s always a bitter sweet kind of thing.