Q is for Quirky

Quinn is an enigma. I have gone back and forth on whether that kid is neurotypical more times than I can count. I have really valid arguments on both sides of that fence. I eventually settled on calling him quirky and called it a day.

He had an IEP for a couple of years, but pretty much just for handwriting. He was dismissed from special education last year, amid a stack of normal test results and teachers and specialists who said he was totally within the parameters of first grade behavior.

I remember saying at the time, “Huh. I guess maybe he just seems weird to me because he’s typical and I don’t understand typical.”

You know what? That kid ain’t typical.

Sure, he talked on time. Sure, he can hack social relationships. No, he’s not repetitive. But, yes, he has a billion sensory issues (normal sensory profile administered last year notwithstanding). He has some anxiety. He is crazy rigid. He is obsessive.

Most of all, he is fun and nice and charismatic and adorable and silly and funny and wonderful. I love that kid so much. He is wonderful.

He is quirky as hell though. It’s hard to put your finger on him. So I kind of stopped trying. I decided to let him be him.

Now, there is something else you should know about Quinn. He is a third child. He’s never been on a team or taken a weekly class or anything like that. I finally signed him up for gymnastics and he just had his fourth weekly class Saturday.

I picked a gym that we’ve been to for open gym time and that Quinn loves. The reason we knew about it for open gym is because it is well-regarded in the local special needs community because they do one-on-one “motion education” classes with kids who have special needs.

The first day we went, it was chaotic. There were a bajillion kids and parents in the waiting area, especially because when we arrived, both the parents collecting their 9 o’clock kids and those of us dropping off our 10 o’clock kids were all there.

Quinn kind of freaked out. Then he found out he had to wear a name tag sticker and he lost it. He wanted to leave. He started yelling about wearing stickers and how terrible it is to have to do such a thing. Also, he knows all about the “pat on the back/apply the sticker in secret” trick, so I can’t even do that.

Eventually he agreed to wear it on his butt.

Quinn's butt name tag

Quinn and his butt name tag.

Once he went into class, he was grumpy and irritated for about five minutes and then he was completely happy. He was following his teacher around talking to him and scratching his back and doing what he was supposed to do. I was pleased.

Happy gym Quinn

Don’t admit that you’re happy, Quinn.

The next week, he had another sticker freak out, but then joined in happily with his class. At some point though, I realized that he was with a class of much younger kids. It turns out that he had been with the wrong class for two weeks. I told the front desk and they moved him. (All the classes are in the gym at the same time.)

Last week, Alex took Quinn. Alex said everything went fine.

This week, Quinn ended up with a totally different group. I was more concerned that Quinn didn’t seem to be totally participating and didn’t notice right away that his group was different. By the time I really figured that out, Quinn was working one-on-one with a teacher.

I thought it was weird, but then I figured that if anyone could talk himself into individual attention, it is Quinn.

Quinn at gym

Quinn was extremely happy with this situation.

At the end of class, however, I did ask what was going on. The instructor said that he was kind of assessing Quinn because he was having a hard time in the regular class. This instructor seemed to be part of the special needs motion education team.

He told me a little bit about motion education and when I said, “Yeah, but it’s way more expensive, right?” he said, “Yes, a little.” (Answer: more than three times as much.) Then he told me about this certain kind of funding that they accept to pay for it.

Now, I know what that funding is, because Jack gets it for summer camp. You have to have proof of a disability to qualify for it. Quinn wouldn’t qualify. It was a little weird to me that he suggested that because the assumption seemed to be that we all knew that Quinn had a disability and that I would know what that kind of funding was.

It was all very confusing in the packed gym with requests for me to call next week to talk to them and me being confused about whether they were trying to tell me not to bring him back for his regular class and what is going to happen if they don’t want him in a regular class, because I can’t pay the motion education price. I mean, I don’t think they can kick him out, but I don’t want to be the asshole whose kid disrupts the whole class either.

All of this to say that I’m sort of rolling Quinn’s quirkiness around in my brain as if it were a marble. I don’t care if he is diagnosable or not. He is who he is and who he is is kickass. I don’t much care if there were a label on it. But I’m wondering if I’ve been too hard on him for being rigid and blaming it on his third child stubbornness when maybe it is something else. I may have to start thinking more about how I react to him.

I also wonder why I and his school are willing to shake off any thoughts of atypicality when some kid instructor at a gymnastics place can spot him right away. I mean, I’m not self-flagellating or anything and I’m not running him in for any evaluations tomorrow, but it is something to think about. If he stands out that much to others, that might be a sign that I need to try to understand him better and help him understand himself.

And, honestly, the fact that they were able to spot him as different was not all that surprising to me, which is maybe an indication that I hadn’t fully accepted him as typical anyway.

One thing I do know for sure is that Quinn will be okay with us. He fits right into this neurodiverse family regardless of what anyone else thinks of him. He is a quirky little dude and we like him like that. But I guess I’m not done wondering where he falls within that landscape.

34 thoughts on “Q is for Quirky

  1. Love this. I can relate because he sounds just like my youngest, we actually had one pediatrician tell me “he’s just kooky”. Then I couldn’t stop thinking of the Addam’s Family and at first I was offended but then I thought eh, that’s pretty accurate actually.

  2. Have a real OT eval him, not the school. If he is in “normal parameters”, then perhaps they are stifling a gifted child- in other words, special ed is supposed to be geared for the gap between potential performance and actual performance- not whether he is “normal” on their standards. Don’t let them try to tell you otherwise. And yeah, they told us Andy didn’t qualify because he was in “normal range” for years… until he just stopped writing, period. Then, oopsie, there was a disability (you have to write in order to take standardized tests, after all). Ask the gym to provide a letter about what they are seeing, and why he is having trouble in the regular class, and get him what he needs. You can do it. *hugs*

    • We have had a real OT eval, actually. She determined that he didn’t need services at all, which is why we were so surprised when the school said he did. Honestly, I’m not sure yet what he needs. That is the thing with both him and Sam. No, I don’t think they’re typical, but right now they don’t really need anything. I’m on it though.

  3. Autism runs in families. Everyone knows this, but having grown up in a family that it runs in, I have noticed something that doesn’t seem to be mentioned often. If your family is not neuro-typical, then not being neuro-typical is not as noticeable or as hard. I grew up in a time before the the autism and Asperger’s labels could be applied to functional people. I am the middle of three children and the hardest hit by Asperger’s syndrome. I have older and younger sisters who have Autistic traits all over the place. After studying autism obsessively, I have come to the conclusion that the autism spectrum is about how your mind works, not about how well you function in society. Some people on the spectrum get along pretty well because their issues do not grate on society, but they still have to struggle. With other people on the spectrum, every time they meet society, there is a jarring crash. Whether autism is disabling depends a lot on the issue and the circumstance. Having read through most of the backlog of you posts (I’m almost caught up) the idea that Quinn is on the spectrum seems pretty clear to me. He has always done spectrum specific things for as long as you have been writing this blog. On the other hand, he has had two older brothers paving the way and you watching over him to make things easier.
    Is he diagnosable with ASD? Most likely. Will he have an easier time of it than Jack? Again, most likely. Will he have a harder time of it than his peers? Most definitely! But he has you and two older brothers watching out fore him and making his path easier.

    John Mark McDonald
    Scintor@aol.com

    P.S. From what I’ve read, I would also place you and Sam on the spectrum as well, just at different points than Jack and Quinn.

    • John, I’m really glad you wrote this. It really coincides with some things I have been thinking, but sometimes it helps to hear it from other people. I think you’re right. And I think you are EXACTLY right in terms of what you say about the intersection of autism and society.

      You’re making me think, and I appreciate that. I wonder if I could just print out all my posts about Quinn and hand them to a developmental specialist in lieu of an actual assessment. It would probably be just as accurate. :)

      As for your p.s., I actually did get a spectrum diagnosis earlier this year, and if there were ever two people with a similar makeup, it is Sam and me, so you might be right on there as well.

      • Two things:
        First, I really do think that printing out your Quinn posts would be really helpful for a developmental specialist would be really helpful. It would give them the “slice of life” view that are what you really need to diagnose but really can’t usually get, so you have to go with all of the standard questions.
        Second, I finally read all the archived entries and am caught up! Part of my own OCD tendencies is that I like to have heard the whole story in order, and I finally have.

        John Mark McDonald

        • I may have to consult with you because now your working knowledge of my family is probably better than mine. Or at least more current. :)

  4. It took a lot of parental and professional to-ing and fro-ing before our youngest was finally given his ASD diagnosis. Lots of people had differing views about him, including us. Compared to his brother, when at home he comes across as almost neuro-typical. It was when we saw him with his peers that it became obvious that he was far from NT. It was a very tough moment to accept that he also needed professional help and that life wasn’t going to be straightforward for him either. But as you said, one thing we know for certain, our almost-but-not-quite NT boys will both be more than okay within their neuro-diverse families.

    • Thank God for accepting families, right?

      None of my kids is typically atypical, which is problematic for professionals sometimes. Wish me luck as I continue with the to and fro.

  5. This all sounds very stressful and confusing. I was getting kind of caught up in it—and then I thought, maybe it’s a matter of enrolling him in a different kind of extracurricular. Maybe it’s just that this one isn’t a good fit. Or maybe not, maybe he needs evaluation and special classes and so forth—or WILL in the future. But maybe NOT, maybe gymnastics just isn’t right for his particular set of quirks. I’m picturing extracurriculars where I’d go nuts, too, like team sports: I shut down, I can’t think, I’m paralyzed with self-consciousness and the crippling weight of my actions contributing to success/failure for others. But put me in a different activity and I’m a happy clam.

    • I totally see what you mean here, but I think gymnastics is totally the thing for him. That kind of activity is his favorite thing in the world. We actually plan to send him to clown college instead of college. :) But you may be right on when you say that a different kind might be for him. Maybe that class is just too busy and stressful for him. Maybe I should think about a weeknight class when it is less busy.

      • It’s also possible that an activity that’s ordinarily fun for him–gymnastics during free play, in which he sets the agenda and moves as he pleases–is a lot less fun/more stressful in a class environment, where he must move in particular ways at particular times, with many eyes on him and “judging” his performance.

  6. I hesitate to give you any advice because you have way more experience than I do. This sounds so much like what I struggle with with Michael. Every eval comes back with in normal parameters, and then there is behavior that makes you shake your head.

    • So frustrating, huh? Sometimes these things become more apparent when kids get older too. But it was just the certainty of the people at the gym that kind of threw me. Everyone else is on the fence about where Quinn lands and they were all, “What about LISS funding for disabled kids?”

  7. This is exactly where we are at with Bub – only we’ve come at it from the opposite angle: he was diagnosed with autism at age 3, and now the school board is in the midst of reviewing the diagnosis, and all the tests are coming out within normal parameters. And of course in a way that’s good news, and it reflects what we’ve been seeing with him – he is doing really, really well. But what bothers me about it is the way it seems to function as a paradigm shift for his teachers, who are suddenly wondering if they’ve been perceiving him incorrectly this whole time. His autism wasn’t imaginary – it still exists, just at some kind of sub-clinical level. The psychometrist who has been evaluating him suggests that what we’ve been perceiving as autism may in fact just be giftedness, but I know that’s not the whole story – that wouldn’t explain his difficulties with writing and articulation, or the fact that he does much better socially with kids a year or two younger than he is (where the social dynamics are less complicated). I’ve always felt like a bit of a poser when I’ve told my people that my son has autism – that felt like a lie or exaggeration. But it feels equally dishonest to say that he doesn’t, and I’m worried that when we remove the diagnosis, we also remove the supports and understanding that have enabled him to succeed as well as he has.

    • It seems like if you are on the “high” end of the spectrum, that society punishes you for doing well. If you have learned to work around your challenges, you are accused of never having them in the first place if not outright faking them. Being gifted is not an alternative to being on the spectrum. Often, they go hand in hand. It’s just that gifted people on the spectrum can be better at working around their challenges. Take it from someone who is both gifted and on the spectrum: They can go together.

      John Mark McDonald

    • I said something about this a little bit higher in the comments, but when your kid doesn’t present typically as an atypical mind, professionals often don’t know what to do with them. Which is kind of ironic all around.

      I’m so glad to hear that your kiddo is doing so well. It is interesting that clinicians want to remove the diagnosis, especially if it can help him keep supports that are helpful. I know that you take such good care of him and make sure that he is understood and supported. I believe that you will make sure that he remains so.

      Also, I do agree with John below that giftedness and spectrum issues are often hand in hand. Imagine a Venn diagram with giftedness and ASD in different circles. That overlap would be significant, I think. :)

      • The giftedness link to a child whose ASD proves harder to pinpoint certainly rings bells with us. When our youngest’s cognitive functioning was assessed, his reasoning, comprehension & understanding of language were off the scale. His IQ was high and the psychologist said he would probably have scored higher but he didn’t really appear to be trying!! I’m sure the more I think about it the more sense it makes that these hard to pinpoint children (and adults too) who are atypically atypical might well be quietly fighting their own battle of awareness, using their intelligence to compensate for their AS difficulties.

  8. My husband, myself, and my son’s therapist all agree that he is on the spectrum someplace, but he is able to function mostly typical in public because he is quite gifted. However, when you look closely at how he fits in, it is clear that he cognitively compensates in situations that are too difficult socially or when his sensory differences are challenged. But when what we call his “public persona” comes off he clearly has a multitude of major issues. The harder he works at his public persona the more he falls apart at the seams when he can be himself (mostly at home). Obviously it is extremely confusing and we have delayed an evaluation because we don’t want a, he’s typical result, to possibly muddy the water latter on when his ability to adapt may not be enough.

    • I not only get this comment so much, I live it. I have that public persona too and I have used it for most of my life. But it is exhausting. Finding someone to evaluate your child that understands that you have to look underneath that persona is important.

  9. I can relate to your life!! We had our older son evaluated this summer. He is ADHD and has some ASD symptomology, but his results were subclinical. He is quirky. My youngest is only 3, but in so many ways your stories about Quinn remind me of Cole. He is quirky and has some sensory issues, but not quite sure where he would be. Cole is all kinds of awesome, too.

    We are a neurodiverse household, too. Keeps life interesting!

  10. That is frustrating I’m sure. He is probably very gifted in some ways making it look like any deficits are flat. Those are the kids most likely to fall through the cracks. Not that I think for a second you would let that happen.

  11. “I also wonder why I and his school are willing to shake off any thoughts of atypicality when some kid instructor at a gymnastics place can spot him right away.”

    Well, to be fair, there may be a little bit of “to a hammer, everything looks like a nail” happening here. The motion education specialist at the gym is going to be more likely to see a need for motion education than you or the school will.

    At the same time, I think it’s a very natural, human instinct to dismiss thoughts of atypicality in our children. I had a huge blind spot for R’s sister’s atypicality–because I didn’t *want* to see it. Because as smart, funny, endearing, and wise as R. is, and as rewarding and fulfilling as it’s been to be her mom, both of us have had to endure a punishing amount of emotional pain and struggle to get here, and our work isn’t close to done. The thought that another daughter might have to endure the same suffering, with me helpless to spare her that pain, was almost too much to bear. It seemed so much easier on me to rationalize away the atypicality–to call it a benign variation of “normal”–than to acknowledge it and open up that Pandora’s Box of emotional agony.

    And you know, that attitude works for a while. Maybe a long while, so long as everyone is happy and functioning well. When happy and functional turns to miserable and dysfunctional, the blinders have to come off. It doesn’t sound as though Quinn is unhappy. Only you and Quinn can answer the question of whether he functions well.

    IMO, your approach is spot on. I think that right now, labels are a lot less important than understanding your little guy’s needs and meeting them as well as you can. Hang in there–you’re doing an awesome job. Quinn sounds like a great kid. :)

  12. I think this is super common in neuro diverse families. My boys are so similar to yours! My youngest is also being evaluated, we call him clinically odd ( with love and respect of course) my oldest is on the severe side of the spectrum, and my middle son is off the charts gifted (which sounds like bragging, but I’m thinking you know that I am not.) Average seems like a nice quiet walk in the park, but I think we are more interesting, or at least entertainment (and /or cautionary tale,) for those more or less fortunate.

  13. This is what jumped out to me from your post: “But, yes, he has a billion sensory issues (normal sensory profile administered last year notwithstanding). He has some anxiety. He is crazy rigid. He is obsessive.” Seems to me sensory stuff is SO central for ASD folks (my kid on the aspie end of things), even though it is difficult to quantify, not considered a “core” symptom in dsm etc (because not studied enough). So despite all the school stuff to figure out year after year, go with what you know about the sensory issues (i.e. identify and relieve) and anxiety and rigidity can go down.

    Also I wonder a lot about introverts and extroverts. My ASD kid is very introverted and really needs chill time, lots of it. That and sensory overload and social exhaustion can mean not nearly as much physical/emotional/mental energy as NT peers.

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  15. Hey, so my 2 are in class at that same place at exactly the same time. Usually my husband takes them because I cannot handle how insanely crowded and stressful it is. (and if you think this is bad, wait until the winter sessions, when it is REALLY crowded). Is Q working with Coach David? I don’t know if knowing people in the class might help him, but if so we can introduce him to E. If you are going this weekend maybe I will take the kids. Then I can stare awkwardly at you. While being bumped by strangers.

    In other semi-stalkerish news, I also run a average 14:30 mile! But only in 5ks. Not ready for 8. My slow running partner and I are looking for some November/December races. Can you informed if you’d like company at the end of the pack? Though I will admit my goal in running is to first break 45 minutes for a 5k. Then, break 40 minutes. That’s an easy jump, right?

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  17. once again, you have expressed some of my own stresses and thoughts. all this to say, can you help me a little bit? i just got a letter saying that a 504 meeting has been arranged for my oldest daughter. she is in the gifted program at school, and there have never been any other issues that i have known about. i emailed the teacher and she doesn’t know why the meeting was called. is it common to have these meetings be non-parent initiated? what do i need to know? help!

    • School meetings that are out of the blue can be confusing and intimidating. Sometimes this is done deliberately to try to make you agree to whatever they say without too much questioning. Sometimes overworked resource people are just trying to get things done without enough time.
      There are two pieces of advice I would give you. First, take someone with you who is not easily intimidated. If they are familiar with these types of meetings, all the better. This helps to keep you from feeling outnumbered and vulnerable. Second; don’t sign anything at the meeting. You have the right to take any documents home and have any experts, friends and random strangers look it over and help you in creating a counter proposal. By law, the school is only giving you advice, but the final decision is up to you.

      I hope that there is some useful advice here and everything goes well.

      John Mark McDonald
      Scintor@aol.com

    • Hey, Melanie! I can understand why you’d be thrown. I would be too. Yes, these things can be school-initiated, but it seems weird that the teacher doesn’t know anything about it. Maybe find out who called the meeting and then get in touch with them. That way you can at least gauge how forthcoming they are likely to be. I also think that the advice in John Mark’s comment is right on, especially about not signing anything right there in the room. I’m happy to chat with you more about this if you want. Feel free to email me, okay?

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