in which i eat my words about labels

on wednesday afternoon i picked quinn up from his dad’s. shortly thereafter, i texted my best friend that i had just realized i was now breathing again. until then i guess i had been holding my breath and when i had him back in my arms it was okay for life to resume. tuesday had been quite a day; my boss and i cried together in each of our offices, and then i had cried at a meeting with quinn’s teacher later in the afternoon. quinn was with his dad at the time, and for the overnight, and for the following day, right up until i inhaled that next breath.

quinn launched his school day review on the friday before with “i feel mostly mad and sad about my day.” after he filled me in on details, and was settled in listening to stories and coloring, i took the phone out to the greenhouse and gave his teacher a call and we arranged the tuesday meeting. what i thought we’d be talking about was her suspicion, based on her observations, that quinn may have asperger’s. then she told me she had asked his dad to keep him home that day, because some things had continued to happen on monday that she couldn’t have going on at the school. aside from her asperger’s observations, which would have been a big enough deal by themselves, she found that quinn was having some major issues with respecting personal space, notably with the teachers. she felt uneasy letting it go in case it happened with one of the kids. she was requesting that quinn stay home until he could get some extra support with working on his personal boundaries. (see priority number one: safety. i am in full support of her decision, as difficult as it is for me to swallow.)

her feeling is that because he may have asperger’s, he is more challenged when it comes to the social interaction aspect of the school day. i thought quinn was a kid who had two quirky parents and didn’t get out much into society when he was with his dad, and therefore maybe a little behind socially, but i hadn’t really put it all together as a diagnosis. he is also markedly ahead in some areas, more than ready for kindergarten in an academic sense, and although i thought he was a bright kid, i also hadn’t put that aspect together into a diagnosis. and i think you might remember me mentioning that i have this thing about schools and labels and diagnoses.

i eat my words

yet suddenly i felt this small percentage of myself that instead of rejecting a label on principle was nodding her head and feeling relief, because the observations of this insightful teacher really click for me. how useful is a label after that initial sigh of relief? that will remain to be seen, but my inner skeptic has opened up a crack since noticing that big sigh of relief. i feel like i need to eat my words a little bit here and acknowledge that i had been very closed to the whole concept of labels until i compared quinn’s teacher’s observations to the wikipedia article on asperger’s and found myself underlining so many passages.

a set of characteristics are not the entire child, and i will be the last person to reduce quinn to that. but i would be lying if i said it did not feel good to know we might be struggling with some things for another reason besides my quirky parenting style. don’t get me wrong, i think my son is delightful and i experience much more joy than frustration in our lives together. and i know everyone has struggles with their children, every child has areas where he or she excels and other areas where he or she needs more support. i guess there have been just these few little things that have been such a struggle with quinn, while the rest of him was absolutely flourishing, and i just couldn’t really get my head around that disparity. the few things were big enough that my partner and my close friends, basically anyone who had witnessed them in action, had all expressed their opinions and concerns that it was not quite normal, maybe somewhat worrisome. one result was that these were areas where i have come up against self-doubt, though i know the only way to parent is to trust myself. i have always leaned away from advice or opinions that began with statements like “but what if he’s still doing it when he’s 15?” okay none of my friends put it in those terms, that is just an inside joke for my fellow long term breastfeeding mamas. sometimes it was more of a “shouldn’t he know better than that by this age?” or “five year olds shouldn’t be doing that still” or gentle suggestions that i might need to be firmer or impose consequences. i have held onto the principles of the way i choose to parent, and that has helped me to maintain my patience with quinn’s larger behavioral issues and remain nonjudgmental on the basis of a certain age having arrived or a certain behavior not having gone away yet. i’ve never found deadlines particularly useful with parenting anyway. i’ve continued to try to work with these challenges using non-coercive methods, but it gets increasingly difficult to justify to others “just talking” with a child who is hitting his mama at age 5 and a half. i can justify it with myself. but justifying it to a partner who is watching it go on…. and on… and frustrated with the lack of progress, is hard. i don’t want to be defensive with rich, and so it’s also been a  dance of hearing him out on his very real concerns, of not taking his insights too personally, of validating each other while still maintaining our core values.

just talking? well, yes, and no. my response to hitting (which is a behavior he does only with mama, and is not the problematic behavior at school) is to get us both safe (being hit by a child of 45 pounds is becoming unsafe for me, even though i am a big strong mama of six feet tall) and then to attempt to work through the emotions quinn is experiencing. you see, i learned to identify my own emotions roughly 3 or 4 years ago (um, yeah. the previous 31 years, not so much on the emotional intelligence.) this was right around when quinn was beginning to have strong toddler emotions and learning to communicate verbally. communicating about emotions has been at the forefront of my parenting approach ever since, both due to the coincidence of us learning emotional weather reporting skills at the same time, and the fact that i think it is one of the single most important life skills anyone can learn. it turns out this is probably extra good news for quinn, because aspies do not always know how to identify their feelings, whereas quinn has had lots and lots of intentional practice. did you catch how he was feeling both mad and sad about his day at school? my inner psychologist cheered when it heard him identify that without prompting. he can be downright poetic at times about his emotions, such as when he told his teacher on one of his first days of school that he was “hungry to get to some playing”. and me? i’ve felt upset, relieved, confused, i’ve had moments of feeling defensive, and mostly what has risen to the surface have been feelings of certainty, strength, and, this is a relatively new one for me: self confidence.

so yes it pretty much does boil down to just talking. i have always found that connection, empathy and validation were the best way to get through difficult moments. it seems like he’ll be more likely to learn those skills with others if he experiences them. i believe punishment or rewards, consequences or any other form of coercion, would detach the outcome (behaving the right way or making a good choice) from his own internal motivations, and artificially attach it to some other stimulus. i’m a stickler on this point between my son and i (to be clear, i’m not a stickler for you! this is a blog about me, not what i think others should do.) if it doesn’t come from within him, it isn’t the real deal. i value connection above correction because i think an intact connection will ensure that the correction will eventually fall into place, whereas i believe one can correct a behavior but damage the connection in the process. i’ve been okay all along with his schedule being a little different from other kids’ because i was taking a different path to achieving the “results”. i think this past year i have started to have to work harder to surrender to his schedule, to unattach from the desired outcomes (non-attachment being a useful state when parenting this way) and maybe even had a shadow of a doubt creep in now and then. but i see punishment being a way to just escalate drama with quinn (i should say, it does escalate, from my less stellar moments when i have used punishments or threats) and the power struggle gets us nowhere towards resolving the “behavior”. i feel as though this time of stepping back and assessing things has given me a frame shift that makes quinn’s schedule seem tenable again, and gives me back hope that time and maybe some extra focused attention will help us reach our goals.

what is an aspie?

frankly, i am no expert, and though i have a few friends who have aspie family members, i had never really studied it. i had a vague sense that it was disputed whether asperger’s is on the autism spectrum, and his teacher mentioned to me when she was introducing the idea to me that in her opinion, placement on the spectrum dilutes the meaning to the point where it is much less useful. while there are some characteristics that overlap, and there can be dual diagnoses with a form of autism and asperger’s, those who are purely aspies have some pretty big distinctions from autistic folks. i have no idea how to resolve this spectrum vs non-spectrum debate, my own issues are more that i want to shy away from the words “disorder” and “syndrome” which seem like they want to tag along. hence i keep leaving it hanging as just “asperger’s, and i will acknowledge that intentional omission here. a collection of traits that describe a certain kind of quirky person does not constitute a disorder in my mind.

his teacher described a lesson she was teaching on money, and how quinn became furious with her over the fact that dimes are smaller than nickels, but worth more. he was pissed at her, and was not going to go on with the lesson no way no how. she validated his thoughts on the size of the money, telling him of a friend of hers from korea who had felt the same way when she first came to our country and had to learn about the different coins. once he moved on from his anger, he nailed the lesson in two seconds, sorting the coins impeccably and completing a worksheet about them as well, while other kids were still scratching their heads saying, “what’s this one again?” the other kids were doing that, however, without a major emotional meltdown.

in those moments when things get rough between quinn and me, i can refuse to accept them, refuse to submit to a world where mean people make the small coin worth more than the big coin, or i can accept what is. i can refuse to accept a reality in which my son is “still” hitting me, or i can accept it and work on it. here we are again, my son is hitting me again, and my first principle of parenting is still “i love you no matter what.” what am i modeling for him if i refuse to accept what a given moment is presenting me?

some of his characteristics….

he is intensely focused and super driven in a couple specific areas of interest. this is textbook asperger’s but is also, well, a smart kid. he is so driven and focused that he excels in some things far beyond his age level. like…. chess. like…. dinosaurs.

he’s amazingly ahead of kindergarten age with pattern recognition. he painted the picture below at school, filling the whole page with paint, and even where the grid sort of goes off the page, he painted the alternating colors “correctly” on the half-squares, whereas kids his age normally don’t grasp that yet, according to his teacher. but quinn is into patterns, chess boards, drawing/coloring very thoroughly, etc. one of his recent interests is coloring little squares and making patterns on graph paper.

focused is an understatement with quinn. as everyone who knows quinn has witnessed, he listens very intently to chapter books and has been doing it since age 3 or so. the hobbit, mrs. frisby, james and the giant peach, winnie the pooh, nim’s island, peter pan, the jungle book

that intense focus seems like sort of the keystone of asperger’s. other characteristics he shows include physical clumsiness. i know all parents hold their breath when kids do stunts, and some of us try to be more continuum concept about it and let them learn from falling and so on… i am a breath holding mama, and i feel lucky in some ways that quinn is a careful guy. he is not timid, and will try stunts, but he is not cavalier about it and he seems to know his own limits pretty well. his overall walk/run is less coordinated than his peers. i think it will take him a while to ride a bike… he delayed walking until 15 and a half months… those all figure in. i always associated these things with his size (he was off the percentile charts for his first two years) and he’s just a little bit less athletic than some kids, but that awareness has never concerned me.

sensitivities…. his teachers noticed quinn likes to rub on others’ skin, and while all kindergarten age kids are touchy feely to some extent, it makes the list. quinn has also always been very sensitive to sound, and his first reaction when he is scared (whether it is a loud sound or anything else) is to cover his ears. sensory stuff is pretty characteristic. he is sensitive to changes in schedule, is sensitive to transition times, such as switching from my house to his dad’s… which is to be expected, but again, is a hallmark of an aspie.

empathy… again i figured it is an age 5 boy thing to lack a wellspring of empathy, but it is definitely something i have thought about- how to encourage him to understand other people’s feelings… and it’s been a struggle, albeit one that i thought was just part of the normal deal…

one that sticks out to me, is that aspies have trouble with nuance/teasing aspects of language. they are somewhat more literal in how they use language. i figured this was an artifact of his dad and i not being big teasers, and so when quinn encounters someone who does tease, he sort of freezes. rich will say something like “oh i bet you want some of this salsa with the hot peppers in it. i heard you really like spicy hot peppers!” and quinn stops dead in his tracks. you can see his wheels turn: he knows that rich knows he doesn’t like spicy stuff, so he can’t figure out why rich is saying this false statement… this is a common occurrence with quinn. i am usually there to explain to him “s/he’s teasing you honey” and walk him through why it is funny, and then he laughs and gets it. he cognitively “gets” what teasing is, but in the moment, it doesn’t flow for him. aspies often can cognitively grasp what a social interaction is supposed to be like if they are coached through it, but the ability to flow with it the first time around, doesn’t always come naturally.

“may engage in one-sided, long-winded speech about a favorite topic, while misunderstanding or not recognizing the listener’s feelings or reactions, such as a need for privacy or haste to leave.” i can see a bit of quinn in this (quoting the wiki article). he does get very talkative about his favorite subjects, and does not catch that the person listening is less interested than he is. his priority is finishing what he is saying (and he is very thorough with his treatises), not necessarily achieving a good give and take in the flow of conversation. all of these things to me could just be a combo of a- he’s intelligent, b- he’s got weird parents and c- he hasn’t had a ton of social interaction.

i hold labels at a cautious arms length

quinn is a lot of things, but quinn is not a list of symptoms. he is a whole child. after not breathing for 24 hours, i picked him up and he was still undeniably, irrevocably, my son quinn. same kid as ever. same love bug with a million things to tell me about dinosaurs. so he happens to have absorbed an enormous amount of knowledge about dinosaurs, more than most five or six or seven year olds. on the flip side, he hits his mom more than most four or five or six year olds. these are all things i have had an awareness of, which is why when his teacher started listing things about quinn, i knew i had to take her assessment seriously because of her accuracy. it’s validating on many levels.

oh and speaking of validating… two separate friends pointed me to this lovely blog post within days of the teacher conversation, and i especially found this quote to resonate with my own experience: labels “provide an opportunity to go within and find our own true voices in the midst of a choir.”

a label will always be less than the whole story about a person. there will always be things about quinn that defy labeling. and a label is only useful insofar as it helps. if it increases our awareness, great! it’s already been helpful in that way. but in many ways we were already aware of the areas quinn excelled in and the areas he needed support in. i will be the last holdout on any evaluations, poking, prodding or testing that anyone else decides is in quinn’s best interest. they will have a long uphill climb of convincing to do with this mama. hopefully we don’t have to even go there. i would be just fine with him possibly having asperger’s and never knowing for sure.

so much good news

so we need some therapy at the exact moment my health coverage is going to run out. it feels a little like when i asked my midwife if i had seemed like a total wimp to her during my labor, and she looked me in the eye and told me, “mary beth, you had an unusual amount of pain.” it was very validating. quinn’s teacher basically said the same thing to me yesterday. “i know a lot of families, but you, you are really dealing with a lot here.

but i am not going to throw a pity party. in other ways, i really have it good. tuesday night i went home and talked until after midnight with rich, who had just happened to buy me brandi carlile’s latest cd on his way home and made me popcorn for dinner and held me while i cried some more.

quinn can go back to school as soon as he has some extra support in this one area. his teacher is undaunted by asperger’s, if that is even what we are looking at. if we are, it simply makes our choice of school that much more perfect. an article on schooling children with asperger’s notes that it is essential to protect aspies from teasing and bullying, and that it is almost more important to work on social training than on academics. quinn’s teacher considers the social-emotional aspects of schooling her strongest area. she sees quinn’s sweetness and goodness and loves him for who he is, in spite of the difficulties of the first weeks of school, and is proving to me that she genuinely cares about each individual child. quinn now has an educational plan that includes seeing another “teacher” one on one to work on his weakest social areas in a focused way. no one is interested in shaming quinn or separating him out as a set of behavior problems. everyone involved is on the same page. even his parents.

i have some time off from work to spend at home with quinn. glass half full…

one of my friends validated me in such a meaningful way on some other good news about the way i parent. she said, “i know there is more to intervention/therapy & education (including parent & caregiver education & support) than i know about, for instance i assume that there are specific concrete ways to support issues with sensory integration that are common (at least with autism), but as far as i have seen, a lot of the ‘how to respond,’ ‘how to manage transitions/issues,’ and ‘parenting strategies’ tend to be the stuff you’re already doing. (for instance, a big part of intervening to help families with an autism diagnosis involves putting across the idea that ‘what works for neurotypical children just doesn’t for kids with autism’ and presenting a less punitive focus that doesn’t rely on imposing consequences, etc.)”

also good is how this reinforces the hyper healthy local-fresh-free-of-chemical-crap diet i feed this kid, if the truckload of information on the internet about diets for kids on or near the spectrum is any indication.

so even if i had a minor mama meltdown over the fact that my son got kicked out of kindergarten after just two weeks, the bigger picture outlook is really great. after all, he is in the company of such wonderful possibly-aspies as albert einstein, henry david thoreau, mozart, van gogh, robin williams and bob dylan. he is still the mighty quinn, still just as destined to do amazing things as he ever was.

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9 comments to in which i eat my words about labels

  • Lb

    I love you 🙂 you know you can call and babble anytime you want/need to. I know you had a lot thrown at you but I really commend his teachers and school for the way they are working with you and Quinn. And I may remind you I was kicked out of kindergarten in the *first five minutes*- I'm doing okay 😉

    • marybethrew

      lmao!!!!! i forgot lil bit! when quinn is older you will have to share that tidbit with him. hehehehe. and yes i agree! his teacher is beyond amazing. i hope that in my portrayal here i was not too vague about how i feel about her amazingness through all of this.

  • lau

    I can't remember what I initially meant to write cuz lil bit had me laugh til I cried a bit. I love you and OLS is the perfect place for mighty Quinn just as you are the perfect quirky parents for him. 🙂

  • Lb

    Here to help ladies 🙂

  • whew. wow marybeth. first off, i am just glad that you sound "ok" throughout most of what you wrote…hurting, in shock, trying to wrap your brain around it…but ok and attempting to take it all in stride.

    i was the nanny for a little boy with aspergers, from age 2-6. i was one of those outside eyes that noticed that something was different, i was there through the mom's loyal denial and also there for the grief of the diagnosis. so much of what you're saying here is an echo for me, so please know that you are not alone, and are in good company of fierce dedicated mamas who are using labels as a way to understand and support their child to becoming the best person they can be.

    for this little guy, what helped the most was 1. occupational therapy and 2. socialization groups. the o.t. was remarkable for sensory integration…for helping the limbic system and in getting the two sides of his brain to communicate. a lot of this you can do yourself….skin brushing, playing with sand (you already do a lot of that!) and helping with climbing, running etc. my little guy was sensitive to sound too…they get so overloaded with stimuli, so easily. and is it any wonder, in an overstimulating world like ours? i'm imagining you could look up "o.t. for aspergers" and find a lot of exercises to do at home.

    my little friend is now 10 years old, is speaking spanish fluently, has gotten his child's blackbelt in karate and has just published his first novel. he has two close friends and is doing a combination of homeschool and private school. in other words…he's AWESOME.

    you are an AMAZING mom mb. i have no doubt that you and quinn will see this through and come out on the other side the better for it all. right now it must be so wild, but i trust you will both find your feet. keep listening first and foremost to that loyal, intuitive voice, and continue to trust your parenting. quinn is so very lucky to have you as his biggest ally.

    love to you.

  • marybethrew

    thanks mary. it is good to hear some experience about occupational therapy. it seems like a totally foreign concept to me, like how could something so obviously not needed by quinn be useful? but the more i think and research it all, the less obvious it all becomes, it's all confusing at the moment and i'm still just sorting through it all. thank you so much for your kind words and your loving support and for taking the time to write that all out for me. 🙂 i am definitely not alone, i know that much!

  • Marybeth,

    Wow.

    First off, brava to you or being open to Quinn's teacher's thoughts.

    I think you are already seeing where labels can be helpful and instructive, and that Quinn is and always will be, an individual.

    I did a lot of research on Aspergers awhile back because I believed a friend's daughter had some qualities of Aspies, and was wanting to educate myself because she was completely closed to it. (Also, there is a young woman with aspergers in Dan's family).

    It sounds like when the families of people with asp. are well informed, respectful and understanding of their family member's needs and comfort levels, this helps the family member not feel crazy in a world that can look and feel different to them.

    Also, when Quinn is old enough to understand this difference about himself, he may be able to appreciate his fierce ability to focus and compute things in his brain. Because really, that is special. You probably know that there are all sorts of famous, influential people with aspergers. Have you heard of Temple Grandin? If not, look her up.

    As Mary Good said, you are the best advocate for your boy. Always have been. You've always been sensitive to his individuality and celebratory of his Quinn-ness. That will always serve him.

    Bless you on your journey.

    xo

    Rachel
    rachel recently posted..the miracle of this

  • mamaC

    I just really need to get in touch with you!! Big hugs and many thoughts. I've been thinking of you since that first meeting. It feels like it's been so long!

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