i feel as though i have spent an increasing amount of energy getting groups of professionals to spend a diminishing amount of time with quinn, providing me with more and more far-fetched “plans of attack” for how to deal with his behavioral challenges, while they rule out in mere minutes that any of his challenges have medical origins. i am happy, in some ways, that his behaviors don’t appear to have a medical basis, because it means he is, as far as we can tell, neurotypical and we can move on with that knowledge. they are the doctors/ experts. however, that still doesn’t explain what is the problem.
~~~rant warning!~~~ also, i’ve had it up to here with overbearing advice about getting him back in school asap. (this has been coming from all sides including dhs, quinn’s counselor, and every professional or doctor we have heard from.) “he needs” those social interactions. yeah. we had a big social interaction on wednesday called homeschool group. it didn’t go well. after another mama had to take over my lesson on buoyancy so i could leave the room to attend to a half-hour tantrum which included him hitting me, it occurred to me that what was happening would be really, really, really disruptive in a classroom where there weren’t five other mamas available to pick up the teacher’s slack.
if it’s not neurological, what is causing him this stuckness that is literally debilitating in a classroom/social setting? what is driving the frequency and intensity of this stuckness? the proportions of this particular meltdown cannot be attributed to what actually happened: a combination of a change of venue for homeschool group, his chosen blue colored pencil being “floated” by one of the other kids in the buoyancy bin, and the subsequent final straw of me peeling the label off “his” plastic juice bottle in order for the kids to be able to see the level of water inside as we tested its buoyancy.
care for a water molecule?
so, assuming i am correct and that those items in and of themselves should not cause any individual to completely lose their $h!t, what is it?
we are seven months into trying to investigate this issue, culminating in the most highly qualified professional yet announcing a diagnosis of “disruptive behavior disorder”. i don’t know if you have ever had your child display disruptive classroom behavior and then spend seven months seeking professional advice only to have the experts arrive at the conclusion that his behavior in the classroom was, in fact, disruptive.
time to fire the professionals and go back to trusting ourselves to find our own solutions.
at some point in the future if quinn reads this post, i would like him to know that i do not in any way believe he has a “disorder” whether he is or is not neurotypical, is or is not behaving disruptively. i want him to know that i love him unconditionally, and that i want to help him feel like he can competently navigate these blue pencil moments without total meltdown, and that is all. i don’t personally care if he ever sets foot in another school, and i mean that sincerely, from the bottom of my heart. it would be fine with me if he wants to and is able to do that, but what i want is for him not to suffer. i believe, sincerely, from the bottom of my heart, that he suffered by attending school for two weeks, and that if we put him back in school now, he will suffer more. it is why i am opposed to doing so. if i could believe, as his father does, that being away from me is what is needed for him to “have the opportunity” to learn these social graces, i do have the capacity within me to let go and allow that path to unfold. but frankly, i have been paying attention here. i have not been asleep at the helm of the mama ship, and i have noticed that being away from me does not make these things easier for him, it only reduces the amount of support available to him to help him through the stuck moments.
people keep asking if my goal is still to get him in school, and i have to say, no, that is not my goal. it is not not my goal, meaning i am not opposed to him one day attending school, once he is able to. but i think we showed that a) it didn’t go well and b) we have not yet addressed the source of why it didn’t go well. after we have, then we can discuss school. am i just being an aries?
i don’t think the professionals expect to have parents with a grasp of propositional logic on their hands. i think they find me intimidating. it’s not my intent at all, but i can find all the holes in everything they say, and when it comes to my son, i am likely to point them out, politely, and ask them to connect the dots. i’m not trying to stand down a person who spent 8 years in medical school to sit in this room with me and tell me about a kid i have spent 265,680 times more minutes with than she has, but i am also not going to sit idly by and listen to blind assurances that school is the right thing for all kids at all times, and therefore it is right for this kid at this time, too. not without asking how school will somehow magically go a lot better this time around than it did the first time we tried.
and when i was told of behavior plans, and could not be given a fully detailed description of what they entail (though i conclude they are a combination of rewards and consequences for the child to motivate him to behave in class, aka the sticker chart approach), i couldn’t help but ask why they felt this would magically work, either. i also was the one single person in the room who cared how a child who is conditioned to behave appropriately through rewards and consequences will come to intrinsically understand the moral rightness or wrongness of his behavior. they seemed to be of one mind that we should just “fake it till we make it,” that it is plausible that the intrinsic moral knowledge will just follow, and that it is at least as important for him to be able to “do school” right now as it is for him to learn these morals intrinsically. yes, the doctor actually looked me in the eye and said that- though i could tell she had her doubts even as the words left her mouth. i respectfully disagreed and mentioned that i think this mentality is how we end up with school shootings, which i think might have not gone a long way to make me seem less intimidating. i ask hard questions, but i mean well. i really do.
i am writing this post because i am, myself, frustrated and feel like i could almost have a meltdown worthy of quinn’s worst moments. but what i want desperately is not to kick and scream, but to channel this aggravation and negative energy into something constructive and positive. i want so much to find a way to make things better for quinn. to somehow figure out how to let him know that he can handle these moments that frustrate him and jam him up so badly.
the one substantive recommendation the doctor had was to read the explosive child, a book i have so far avoided because of its condescending title. i still do not appreciate the title, and that goes for any book which labels a child something so negative, but now that i have cracked the book i think its innards are more consistent with my beliefs than i would have guessed. yet, i have already read quite an extensive list of books with theories and applications similar to or more advanced than the “collaborative problem solving” approach this book offers, and i do not hold out hope that this book will contain some magical nugget of truth inside that i have not already read about in another format or thought up on my own. this book is trying to tell me, as far as i can tell, that my child is doing his best, and that he lacks skills in some areas. thanks, got it.
almost without seeing quinn, the doctor decided he is not on the spectrum. she asked him who his best friend is, and he named a boy in our homeschool group who is close to his own age. she asked me if the child reciprocates the friendship, and i said he does. between that, and the fact that he has more than one interest and can play with things outside of his intense interests, and that he can hold a reciprocal conversation with her, she concludes he does not wear the aspie badge. (i guess i thought that since it was a spectrum, a child could have difficulties that weren’t as extreme and still be on the tail end of the spectrum, but maybe that is me getting carried away with logic again.)
she did spend a half hour with him, going over the standard developmental and neurological tests. he scored very high in many of them, related to cognitive and fine motor skills. he could not skip for her, and had some overflow motor stuff that signaled to her a potential minor delay in gross motor skills, but she attributes that to low muscle tone and large head size, neither of which is causing the problems socially/emotionally for him. and neither of which she thinks should we worry about. i agree.
perhaps the grittiest part of the evaluation was the beginning when the doctor had time with myself, quinn’s dad, and his girlfriend. coparent was as usual doing his level best to undercut my character, with snide comments about home birth and schools run out of some lady’s house. it is quite obvious that he still would like to believe the worst of me, and that both he and his partner are maintaining their story that quinn is abused by me. they had all kinds of evidence to share with the doctor, even some brand new ones they hadn’t brought up with dhs or at the previous meeting we attended about quinn. why, quinn had “just that morning” exhibited nursing behavior with his dad, and this was somehow made to sound aberrant and outrageous. the doctor certainly raised her eyebrows, and asked whether quinn has been around nursing babies lately, and i said that while he has been around nursing babies, he has not been around actual nursing to my knowledge (baby pancake goes in another room to nurse when they visit) but that i think it’s important to keep in mind that quinn remembers nursing, as he weaned at age 4. “almost five!” interjected his dad. wow, pin the worst mom of the century badge on my child-feeding chest. the doctor then relaxed, because this at least explained why quinn might do this behavior, “but that doesn’t address the social inappropriateness of it.” ok, well we all know where we stand on the spectrum of cultural uptightness about breastfeeding.
so while we’re all getting to know each other so well, let’s pop the “was quinn your only pregnancy?” question on mom!
exhale. i have not shared this publicly before, but quinn was not my only pregnancy. there was one before, a grand learning experience of my life, which i can say now that i can look back on it with almost a decade of perspective. it was not a viable pregnancy, and i won’t belabor the details but suffice it to say, this was, for me, an intensely personal question, laid out on the table with two people who were openly displaying aggression and animosity towards me in the room. i don’t know what they are teaching doctors these days about bedside manner, but it doesn’t seem to be considered a very important lesson. i would have preferred (understatement) her to ask me that question when we were one on one.
not to mention i kept getting interrupted when being asked about quinn’s pregnancy and labor and birth (home birth! scary!), and after the previous question had set me to physically shaking (i feel i handled it with a minimal amount of scene-making compared to the whirlwind of what went on internally for me, though i did turn to coparent’s partner and say, “well, i’m sure you have heard all of this already, so here goes.”) afterwards, i felt compelled to stick up for my right to answer the birth questions, as the one who carried him and pushed him out, without interruption. coparent stammered lamely, “well, i was there,” and i repeated that i would like to not be interrupted, and went on answering questions.
to her credit, coparent’s girlfriend held off, briefly, on muttering things about me when the first pregnancy question arose, and appeared appropriately taken aback that the question was asked in front of her. because i believe in public praise and private criticism, and because this is a blog about me and not her, i have not mentioned her since she arrived on the scene in our lives, when i believe i gave her ample benefit of the doubt, but i feel i would be remiss if by omission i led you all to believe that my initial impression has held up. i still think it is worth giving credit where it’s due, but this person has, far from my initial projections, done very little to make my life easy since not long after i made that post.
something about women tearing down other women has a way of getting me down like nothing else can. i don’t let anything get me down for long anymore, but i will say that it bothers me very much that a fellow ani difranco loving, oregon coast dwelling, hippie mama can harbor such hatred and ill will towards me. i don’t call it hatred lightly, but she is on the team trying to take quinn from me, and as another mama, i cannot fathom it. that is all i want to say on that, and i want it to be said that i harbor no ill will in return, and wish her well.
doot doo doo….
so quinn was, it is ironic to say but unfortunately, stellar the day of the evaluation. he played happily with a bin of mr. potato head parts in the next room for a good long while as we discussed him. at the end the doctor asked, almost as an afterthought, “so do you feel we’ve seen the real quinn here today?” i said yes she got to see the sweetness of quinn, but not any of the problematic meltdown stuff, so while it was really him, she honestly didn’t get the complete picture, or see firsthand the reason why we were there.
at the end of the evaluation was a group session including several other professionals from various family and disability groups (this was where i was doing my intimidating logic thing, as part of the synthesis of what was learned through the evaluation). one of the people took me aside afterwards and said, “you know, i totally get you on the intrinsic/extrinsic thing.” she had some good reminders of tricks i am already familiar with to help approach the morality stuff from a worldview of “it’s important for him to understand and internalize morals, not just comply.” things like social stories, making a story board or comic strip of the behavior; what went wrong and how to do it right next time. she specifically mentioned it in the context of perspective taking, which is an area where quinn seriously lags- understanding that other people have experiences and thoughts going on all their own, that are not the same ones he is having.
so rich and i sat down with him on saturday morning for about an hour, and we did some drawings of how things had gone at homeschool group. we wrote thought bubbles for quinn, me, the other kids and parents at the homeschool group, and tried to spell out for quinn what other people might have been thinking when he was thinking “i’m mad that it isn’t going my way.” we also worked with him to draw the alternative scenario, and let him come up with his own words for how it could go well, even when he has another time when he is frustrated like that day- because those feelings will come up again. we also encouraged him to come up with a “secret code password” for me to use, that will help him remember what we’ve talked about. we offered, “like one of the passwords to dumbledore’s office” or “how about something from star wars”? he was still stumped, so i asked, “can you think of anyone in star wars who is good at solving really hard problems?”
“oh, yoda. he can solve any problem, especially if it involves helping someone become a jedi.” perfect. what would yoda do? might become my new motto.
life has its seasons, and in the spirit of leaving no stone unturned, i am glad we did all we could to gather information during this season. it feels like some doors have closed, and more questions have arisen than answers, but it feels like this season is drawing to a close, as all seasons must. i guess it’s sort of like dorothy and her ruby slippers, and i had been carrying all the knowledge i was going to have all along, i just didn’t know it yet. i guess it’s time to return some books to the library, usher the experts out, pull myself up by my bootstraps, and forge ahead.
speaking of books, i received a question in the comments about one of the books i’d been reading and for my own record, as well, i wanted to make a list of what i have been reading recently. i’m not much for writing reviews, but jotted a few notes of things i liked…
returning to library:
the out-of-sync child; recognizing and coping with sensory integration dysfunction by carol stock kranowitz; i liked her “sensory diet” concept, and got some inspiration for adding more sensory experiences to quinn’s diet to help him integrate.
emergence: labeled autistic by temple grandin; she rocks. nuff said.
elijah’s cup by valerie paradiz; slow start but a fabulous read by a mom of a boy on the spectrum. awesome research on the topic of autistic culture. she and i are on the same page as far as abhorring terms like “disorder”.
be different by john elder robison; awesome book. everyone should read this. written by an aspergian who would be fun to have a beer with.
the brain that changes itself: stories of personal triumph from the frontiers of brain science by norman doidge; i heart neuroplasticity!
teach your own by john holt; what can i say about the father of unschooling? this is good therapy, empowerment, and affirmation for me right now.
the explosive child; a new approach for understanding and parenting easily frustrated, “chronically inflexible” children by ross w. greene; my assigned reading with its unfortunate title. i will keep you posted of any magical nuggets i unearth!
thanks for listening! i welcome any feedback… especially in the spirit of trying to spin some gold from the funk, channel this energy towards something constructive. or you can poke fun at my aries-ness, either way i’m cool. just do it in a loving way- i’ve had my fill of hate for the time being.