rich and i take turns leaving each other “reading assignments” from the newspaper. we both follow along with a recent series in the oregonian of “northwest love stories”. the most recent story i happened to catch first, and leave for him, but more often than not i am the one receiving these reading assignments, as he is much more thorough about reading the paper daily. i always tease him when he leaves mushy stories for me to read, or chooses romantic comedy movies for us to watch. he has a thick skin and is impervious to teasing, luckily.
anyway, ambrose and martha, the subjects of the most recent love story article, have been married for 73 years and are both turning 100 this year. they claim their secret to bliss (ambrose “ham” claims it, and martha affirms with smiles and a thumbs-up, as she is nonverbal at this point in her life) is “good eating and good sex.” i think it goes without saying that humor must weigh in as well. from the interview: “both are in wheelchairs. yet during our introductions, ham called martha ‘lover’ and complimented her hair.”
i’m still holding out for us to spend 98 years together, so it gives me hope when i read of couples like martha and ham.
***
how did you learn how to love someone? was it by following someone’s example? your parents? other couples you were close to? was it by trial and error? did you, like me, have a disproportionate amount of error in spite of having really good role models, and feel like you were never going to get there? do you feel like you are now “there”?
***
there’s so much we need to learn in life. i will be curious what the future will hold in store for quinn in the love department. i know all parents think of this. i spent several years going over and over with myself the guilt trip of “i didn’t manage to keep it together with his father” and how that is such an omen of doom for his future love life. but i have laid that to rest, and i know for sure that witnessing a working relationship like mine with rich (and like my parents, and my brothers and sisters-in-law, and other important couples in his life) will be much more beneficial to quinn than was the ill-fated relationship between his two parents.
i wonder what his quirks will look like as a teen, a young adult? it’s so hard to picture, as rachel put very eloquently in her recent post. will his future partner someday have to resort to telling him it’s time for the ewoks to jump in the speeder in order for him to put down what he is doing and get in the car to go someplace? will he still need to be persuaded to change clothes by imagining he is dressing in his hogwarts robes? will he talk their ear off at bedtime about the next lego set he wants to get, completely unaware they are falling asleep and want him to stop listing each individual piece, what each minifigure will be wearing, and what color light-sabre they will carry? when they go for a walk will he cover his ears with his hands and shrink away whenever a dog approaches? when they eat dinner will he insist on hot dogs, mac and cheese, or “skinnies” (his name for thinly sliced quesadillas)? will he, with his own children, assume inaccurately that his child is doing it “on purpose” when they knock something down or bump into him?
this is the stuff that is all so ambiguous and vague that it could all be “normal kids’ stuff” or “age appropriate” and yet, it could also indicate asperger’s, or something else. i am still on the fence whether it matters what we call it. we call him quinn, and these are things we (or at least i) know about him. i am still unsure whether i think his brain is wired differently and we need to approach things differently than one would with a neurotypical child. yet, i already know for damn sure we need to approach things differently with quinn on many occasions; because he is quinn, and there are things about him that just aren’t a factor with other children, wiring aside. but then, this can probably be said for each and every child, can it not?
i’m never sure how severe what we deal with is, compared to other families. i get glimpses, but then i wonder if i am just overthinking things, as i tend to do. and comparison is rarely helpful anyway. yet sometimes i fantasize about this being another situation like the one where my midwife had to sit me down and tell me that no, in fact, i hadn’t been a complainer, “no mary beth, you had an unusual amount of pain.” i fantasize that somebody somewhere will acknowledge and validate that figuring all this out can sometimes be really friggin hard.
one conclusion i’ve come to, given what research i’ve done and what i know of quinn, is that there is definitely some knowledge to be gleaned from the asperger’s literature that does benefit quinn and is well worth delving into, regardless of whether he fits any of the scads of subtypes. there are strategies i am reading that either echo exactly what i already do that works, or are suggestions i am taking very seriously because i think they will also work. he may be simply a quirky, bright individual with sensitivity to loud sounds and anxiety about transition times, who struggles with things getting thrown or given away, who is off in his own head quite often when pragmatic life occurrences come along, who is insistent about being in charge of himself, who is more comfortable at home, whose word of the week is technically, who is a bit of a perfectionist and doesn’t do things until he knows he can do them well, who prefers having a heads up about what is coming next, who doesn’t really get all the jokes and can’t tell one to save his life, who runs a little crooked, who doesn’t seem to realize it stings when he tells me “store waffles taste better than homemade ones,” and who might not always interpret another person’s reactions accurately. or that unique collection of characteristics might be a subtype of asperger’s. does it matter? that unique collection of characteristics is definitely quinn.
to me it seems that what matters is that by the time he thinks about having a partner, he somehow has learned (in whatever way works for him) that even if you think the store waffles are better, when someone you love is making you something homemade, you keep that thought tucked away in your head.
my current read is parenting your asperger child; individualized solutions for teaching your child practical skills by alan sohn and cathy grayson. i liked the title, and consistent with their title, they have already made quite a few mentions in the early chapters of the way in which each and every asperger child will have some traits and not others, and that every child is, bottom line, an individual. no one is classic, everyone is a subtype.
parts of what i’ve read in this book resonate with me, others are making me cringe, but my hunch is that is mostly due to semantic clumsiness. i like their term “defender of reality” as one of the parent’s roles, but one of my things about parenting has always been to question the assumption that the parent is always right and the kid is always wrong. i do not assume i know better than he does in all circumstances (sure there are some…), and i shy away from the idea that i need to make him out to be wrong when his ideas don’t match up to the rest of society’s ideas. i do think it’s important for me to introduce him to what society thinks (that a couple means two and a few means three, instead of the other way around), point out where his ideas depart from those of society, and let him know how to navigate in that society, but i also think that can be done while preserving his self-knowledge. one thing about being a defender of reality, is that i’m aware of the subjectiveness of each of our realities (did i have an unusual amount of pain?), and it is hard to think that my own version of reality should trump his.
aside from the individualized approach, another thing that i find validating in this book is the idea that anticipation of problems is going to help immensely in someone with these traits. “too often, people wait until something goes wrong and then try to do something about it. this is a completely backward approach for an asperger individual. prevention is the key. anticipate problems, plan for them, and implement your plan before a problem arises.” this is where i think we could go very astray by abruptly tossing quinn into another school on his own, without a lot more thought and effort and guidance invested into it. the book emphasizes the anxiety that these kids can feel, and anxiety is a real one for my guy.
last night as he was finding it impossible, yet again, to fall asleep, and i was listening to his long speech about the star wars lego set that has his favorite monster (“which is made from not very many pieces, with two tentacles that you have to put together, and two brown pieces that look like they could be covers to cockpits, except they are just brown and not glowing, which you put together for the monster’s beak…..”) after the puppy relaxation story with backrub, after more hugs and one more trip downstairs to the bathroom and to say goodnight to rich, after more lego talk and after i finally received a stroke of inspiration and told him he needed to take his magic wand and draw all the thoughts out of his head and put them into his pensieve like dumbledore so that he could get some rest… after all of that, he looked at me and said, with such earnestness, “i love you as big as the sky, as big as the ocean, all the way to the moon and back again, um, like, three, to six, to twenty, to fifty, to one hundred, to five hundred years! and that many months! and that many weeks! and that many days! and that many hours! and that many minutes! and that many seconds!!!” at the end of the day, i think he has the love thing figured out already.
***
after i was back downstairs, rich was having some pie and with the big pie-eating grin on his face he told me he had saved his first piece (the one i had packed in his lunch) for right before his play rehearsal that evening. he let me know that store-bought pie has nothing on my homemade pie. (which he also happened to mention is how he feels about waffles.)
maybe all three of us are getting this love thing figured out.
It sounds to me that you’re exploring a smart, balanced combination of 1) sticking your toes into the literature on characteristics/solutions/gifts of aspergers, and 2) seeing Quinn ultimately as an individual.
I think you’re brave and an advocate and that you and Quinn are forging new territory and that it will be hard, but that your love is stronger than all the hard moments.
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