the other day i said to my oldest friend that i feel as if i’ve lost my faith. i am a person who has always subscribed to a lot of woo-woo stuff, from astrology to cosmic force and all of the “everything happens for a reason” dogma that goes along with it. but there i was, spilling my guts to a most trusted confidant over a glass of rose, saying, “lately i just think…shit happens.”
i came to this conclusion after hearing myself saying, once again, that the past week or month or months have been “some of the hardest” or toughest or roughest or most difficult. after hearing myself say this for the umpteenth time i realized that i am no longer in a “tough phase,” this is my life. it is hard. there are a lot of days where i feel like i’m struggling just to make it through the day. where i feel like i’m not strong enough or good enough or compassionate enough or nurturing enough to be the mother my child needs. like things are just worsening with time. part of the process of having a child on the autism spectrum, for me, has been walking through the levels of acceptance. levels that go deeper and further and take different directions. facing the fact that this is not going away. facing the fact that my life is always going to be difficult. that i might never be able to work again. that my son might never talk. that he might never become independent. facing those possibilities is terrifying. but necessary. and doing that, lately, has caused a sort of unraveling for me.
lately the struggle has been about routines. my son has to have things a certain way, and when something doesn’t fit what he expects or wants, crisis usually ensues. i make myself sick trying to anticipate what he might want or need out of every minute, and of course i fail because life cannot be just the way anyone wants it all the time. i realize that i’ve been just as uptight and rigid about his routines as he has. i realized this when all of my carefully laid plans started to fall apart, and the falling apart got larger and larger until i had to pay attention. and realize that i can’t control my son and his reactions to life. all that i can do is be here for him. i can’t make the world go away.
when i told my friend that i felt as if there was no universe or star map or reason behind things anymore, that i no longer believed in magic, something funny happened. i started seeing things that gave me a certain kind of flutter, the kind that comes from synchronicity. i overheard conversations that felt like they were speaking to me. my plans fell apart so much that they left me alone with my son, and i realized that no amount of therapy or school or play groups can compare to me being with and connecting to him. i love him unconditionally, and i was so caught up in doing all of the right things, of making sure he got all of this therapy and intervention and just the right people and places and things to avoid some big scary dark unknown future. grinding through each day until i could get some time to myself, or my husband got home, or some vacation or future perfect. and in that i was missing the moment. the moments in the day where he wants to snuggle with me, or sing to me, or show me how incredibly smart he is. it’s not that i didn’t live those moments, it’s that i let them slip by. in my quest for something else, something that i can’t even define.
so i think that yes, shit happens. but it’s kind of magic when it does. because it’s the shit that makes you pay attention and look at where you are and who you’re with and what is going on in the present moment.
lately i’ve been feeling like vintage is where it’s at and staring into my closet at the designer items i have that remain on their hangers for fear of chocolate smudges and sweat stains and the messiness of chasing around a 3 year old. i’ve also been burned this year by some purchases, for example the jacquemus dress pictured above that i have been hunting for months, lost out on 3 different times, finally found, paid too much for and then tore at the hip button while trying it on (guess i’m not returning that one). lately i’ve felt like online shopping is more trouble than it’s worth. also i have a lot more fun mining for gold in thrift stores & flea markets and putting together outfits i can actually wear. so my designer discount days may be done, for now anyway. otherwise i’m surprised to find that shorts are back, as are overalls & jumpsuits (three things i have always bought incessantly & also things i thought i’d sworn off). also yellow really is the new black. yellow, orange yellow, yellow on yellow, yellow and gold. yellow, yellow, yellow.
the lack of writing that i do on the subject of parenting a child on the autism spectrum is odd, considering, but it’s a subject that i’m hesitant to broach most days. the truth is that my feelings about it fluctuate a lot. my son is rapidly approaching four years old and sometimes i still catch myself wondering how i got here. at the same time i realize that i’ve gotten past the merky denial that comes with an early diagnosis, where the term “autism” is formless, undefined and hangs over you like a warning. where you tell yourself things like early intervention will solve it like a problem. where you think if you try hard enough you can make it go away. my son was diagnosed on his second birthday, and at the time i had no idea what to expect or to feel. but as he gets older i see more clearly those behaviors, the ones that seemed abstract when he was still just a baby.
what i’ve learned over the last year and a half is that the rules that apply to parenting apply to autism: there is no simple solution or answer. no two children are exactly the same, period. what works for my son might not work for another child, and just because it works today it might not work tomorrow. during the diagnostic period of filling out endless surveys and questionnaires and hearing theories by different therapists and doctors and seeing how they contradicted each other made it clear to me that my son did not fit any one profile. oddly enough it was his (hmo) pediatrician who said to me upon hearing his diagnosis, “don’t put henry in a box.” i have refused to do that, even when it’s meant that i come off like a pushy complainer. i’ve accepted my role as “high maintenance mom” in the eyes of his therapists & teachers. it’s more important to me that my son is taught the way that he learns, not forced to perform the way that others want him to.
my son has been going through a lot of transitions lately. the school year ending means lots of schedule changes, not seeing familiar people anymore and new people showing up. for my son, repetition is everything. it is how he functions, assimilates, relates, and stays on the ground instead of floating away (this is my interpretation, anyway). any change to his schedule is extremely upsetting to him. navigating changes can feel devastating, to him and to my husband & i by association. couple this with the fact that he is 3 1/2 and naturally in a temerarious, defiant period of his life. i feel like i’m walking on eggshells in a way that i haven’t since he was a colicky newborn. i am constantly worried about setting him off. the frequent tantrums are looking more bratty, but lately i’ve been trying to muster a little more compassion. public humiliation sucks(!). but i realize that getting some negative attention from strangers is not the end of the world. lately i’ve been trying to understand my son better. even though he can’t tell me what is wrong, he is telling me through his tantrums. lately i’ve been trying to listen more. and let those tantrums happen. and not let it feel like something that is happening to me, but something that is happening to HIM. and how can i help him to get through that?
i often say that parenthood is a crash course in life. all of the little things that you turn a blind eye to or regularly deny or suppress come right up to meet you. our children are our biggest mirrors. i think that if parenthood is a crash course in life, parenting a child on the autism spectrum is a master class. i confront my biggest blind spots daily. i’m forced to fight on days when i just want to hide under the covers. i am forced to be confrontational when it’s my nature to be passive (or passive aggressive). i am forced to be nurturing & affectionate when it’s my nature to shut down & withdraw. i am forced to show up when it is my nature to run away. one of the things that has surprised me most about motherhood is that somehow the love never runs out. after the most challenging, exhausting days, i still wake up (sometimes after being up all night with him) happy to see his face. i still constantly look for new ways to try to help him, new ways to make it better for him, new ways to make him smile.