I’m teetering on the edge these days. Teetering, I tell you. Worry is scattered along the sand. I’m walking in and out of it all, around it, trying not to get any of it on me.
In fact, the beach of my mind these days is awash with debris, as if far out at sea, a violent storm reached down through layers of ocean water and scooped up the sand in angry fistfuls, roiled the waters and spit the underbelly on the sand. Worry, fear, envy, loneliness.
Fluffy is lots of things too, lots of f words: fantastic, funny, fast, floundering, flailing, frustrated, flummoxed, furious, fearful.
The house is for sale but so far, no one is buying. At first, I made the house sparkle, displayed vases of freshly cut flowers
throughout, offered cookies to prospective buyers with my brightest smile. Now I block the front door with my arms folded across my perimenopausal amplitude, jut my chin in their direction and bark, HEY! ARE YOU GONNA BUY THIS HOUSE OR WHAT?
We’re moving back to Northampton soon after labor day, regardless. We’re taking everything despite the urgings of some to leave things here, to “stage” the place. I can’t. I want to be in one place. I want to be home. I want to be settled. But we won’t be, even when we move. We’ll be in a new rental. We can’t really be home until we decide what to do about Fluffy’ schooling.
For now, homeschooling is the answer. But for always? I don’t know. I want to find the perfect school. I don’t know where that is. I am willing to wait for that school to materialize. I am willing to move for that school. I am willing to create
that school. All that takes time, time and trust, time to see where Fluffy is going, who he is becoming, and what is coming into form, what needs attention, how much and what kind.
He’s social. This I know. He’s a deeply social. And despite how some object to characterizations of autistic kids being TRAPPED inside and blah blah blah, my experience as Fluffy’s mom is that, in some ways, this is absolutely true. There are aspects of him, of his personality, temperment, and heart and soul that ARE stuck underneath a confusion of sounds and feeling and impulses, as if he is fifteen or twenty radio stations simultaneously and variably, tuned.
Not always. But sometimes.
He wants to play with the kids.
I want him to play with the kids.
I am learning how to let him take the lead on this, how to trust his timing. And also how to provide the necessary support. It’s not always clear how to do this.
I am a bit lost.
Fluffy tells me to back off. He uses different words but the message is the same. When he is around the other kids, it’s hard enough. He doesn’t need me fluttering about, leaking anxiety.
Fluffy is very aware. He knows he is different. He knows he doesn’t know what to do. He acts in ways that pushes kids away and then, when he’s alone, he punches himself in the head and calls himself Stupid.
I thought we could avoid this part. I thought I could shield him from this. I thought I could protect him from feeling badly about himself. I thought I was that powerful.
I hear talk about whether it’s okay to want your kids to be indistinguishable from the NTs, is that wrong or right, a good or harmful wish or goal, etc, etc. When my son is near a group of boys that are playing in the sand, racing down the walkway to leap over and over again into the sand, when I see him sit closer and closer to watch out of the corner of his eye but then never join, instead, dribble spit on his fingertips, fill his hat with sand and dump it on his head, over and over, I think, Do I need him to run with those kids? No. Do I wish he would? YES. Do I believe he wants to be running with those kids? YES.
Am I right?
My mother instinct says yes.
Fuck that talk about indistinguishability. It isn’t about wanting my kid to disappear in the crowd, it’s about wanting him to appear in the crowd, to be part of it, however small.
You know that phrase, where two or more are gathered? It’s not religious. It’s sacred. It’s in this quote from Krishnamurti:
Action has meaning only in relationship and without understanding relationship, action on any level will only breed conflict. The understanding of relationship is infinitely more important than the search for any plan of action.
We are human beings. We are about relationships, relationships with ourselves and with others.
That’s what I want for my son. And in that way, yes, I long for him to be indistinguishable from any other human.
Oh, Kyra, I feel you through this post, your worry and anxiety and all of it. I don’t know, does it help to know that I’ve thought about all the awful things that could happen at the first soccer practice tonight? I’m anxious. I can’t hover. Vaughan’s issues are not Fluffy’s issues, of course, but I’m worried he’ll not fit in, he won’t know what to do, he’ll be crushed. And I can see how my worry is probably just normal mother worry, without the added complications you and Fluffy face. And I’m so sorry any of us have any of it.
Sometimes it sucks being the mother.
Isn’t that the heck of it? Aspergers, PDD-NOS, Autism…. it cuts to the core of what is most human about us… our kids…. our ability to relate to each other.
After reading this post through tears, the only thing I can say is “me too”. I don’t want my boys to be indistinguishable for ME, I want it for THEM. ‘Cause it kills me to look into their eyes and know they know that they don’t get what the rest of the world seems to understand so effortlessly.
I need to go find my box of kleenex now. Thanks once again for saying so perfectly exactly what I feel in my heart.
wow, do i hear everything you’re saying.
no, i mean i hear everything you’re saying.
all the time. (in my head.)
cause i have this conversation with myself constantly.
oh, hi, by the way. i’m jess.
i should have introduced myself earlier, i guess. i hope you won’t think me rude. i’ve been lurking here for a while now admiring the fluidity of your writing, the strength and clarity of your voice and the ferocity with which you so obviously love your son. (not necessarily in that order, obviously.)
i have a five year old daughter named kendall who is also very socially motivated, but for whom the tools of rudimentary discourse are elusive at best, and often completely inaccessible. one by one, we give her the tools. slowly, surely, we show her how to use them. in babysteps we move toward successful interaction. we are getting there. slowly. sometimes heartbreakingly slowly.
i cried in a meeting today with kendall’s team and her aide for next year, who we were meeting for the first time. she is set to enter a typical kindergarten class in her big sister’s elementary school with a full time BCBA shadowing her.
i have to have faith in the aide, but i am terrified.
what if she asks the kids one of her 5 or so questions over and over again? ‘what’s your name? are you a boy or a girl? where do you live?’ these are the questions she asks me all day long to initiate interaction (despite the fact that she knows the answers ~ ‘mama, girl, and here with you.’)
what if the kids turn their backs on her (as i’ve seen them do before)? what if they call her weirdo (again)? what if they ignore her? what if they tease her?
i don’t know if there IS a perfect school. i see schools as a microcosm of our world. perfection doesn’t exist in either. but we work to make it as perfect as we can. as comfortable and as productive as it can be. as nurturing and encouraging as possible.
and then we monitor, assess, re-assess and pray.
i don’t know that what we are fighting for for kendall is indestinguishabilty (if that’s even a word) or not. i know that what i want more than anything is for my daughter to feel like, different or not, she CAN run with those kids. IF she chooses to. if she’d rather pour sand on her head, well, that’s fine too. as long as she feels that she has the choice. that’s what i’m fighting for i guess. the choice. and hoping for. and crying about.
thank you so much for sharing all of this. you write beautifully and your insights are invaluable.
oh, and it was nice meeting you.
What you said. And Jess said. And every body.
I picked M up from camp today and a kid yelled her name and waved good-bye with a smile.
I analyzed that wave for 15 minutes. Was it hostile or sincere? Did she respond back in an appropriate amount of time?
Like you. I don’t want to leak anxiety all over my kid.
I have been praying for a Kyra post, and this one is for the archives.
xo
I get this, Kyra. Every last word of it. Thank you for writing another extraordinary piece.
Oh how I hear you on this one.
Nick used to beg to go to a local indoor jungle gym. We’d pay our admission and he’d excitedly run full steam ahead to the entrance to the two story climber. And them stop. And watch. And stand. And watch. That was the extent of it until we left.
My heart would break. He wanted so badly to join in but could not. I could see in his face both the desire to join the other kids and the fear that held him back.
We kept going back. Hubs would often go in without him and try to coax him in.
One day he ran full steam ahead to the entrance as usual, and kept going. Soon, he was engulfed in the throng of kids on the climber. Giggling and shouting. The fear that once held him back completely vanished.
I wept that day.
Kyra,
I’ve been sensing this post since your camp experience. I wish I had some answers, but afraid I’m in the same boat. I keep thinking about what I’ll do when Frog is back in school, then wondering if he or I will ever be ready for him to be in school as it exists now. I think about starting a school – how, when would I have the time to do that? I plan play dates that Frog is very excited about, only to see him escape as soon as the “friends” get here or have the other little boys just stare at him wondering what he is doing, why he is acting like that or avoiding him after he pulls their hair.
I just have to think that with love and understanding at home, our kids will find their way. They will grow, they will mature, and they will learn to control some impulses and learn to know when it is too much. They will learn to make friends on their own terms – maybe not the conventional friendships that we dream of for them, but friendships that are satisfying and fulfilling of needs we do not fully understand. Will there be heartache? Undoubtedly – for him and for you. But we all experience heartache to some degree in life and it teaches us many valuable things. Your little guy is an amazing person. Many in this world will miss that, but not everyone. The universe conspires to bring special and important people into our lives. And that, my dear, is why we keep plugging along through the doubt, through the fear, through the unknown. You are an amazing and inspirational mom – you will find the light again.
Kyra,
I’ve been sensing this post since your camp experience. I wish I had some answers, but afraid I’m in the same boat. I keep thinking about what I’ll do when Frog is back in school, then wondering if he or I will ever be ready for him to be in school as it exists now. I think about starting a school – how, when would I have the time to do that? I plan play dates that Frog is very excited about, only to see him escape as soon as the “friends” get here or have the other little boys just stare at him wondering what he is doing, why he is acting like that or avoiding him after he pulls their hair.
I just have to think that with love and understanding at home, our kids will find their way. They will grow, they will mature, and they will learn to control some impulses and learn to know when it is too much. They will learn to make friends on their own terms – maybe not the conventional friendships that we dream of for them, but friendships that are satisfying and fulfilling of needs we do not fully understand. Will there be heartache? Undoubtedly – for him and for you. But we all experience heartache to some degree in life and it teaches us many valuable things. Your little guy is an amazing person. Many in this world will miss that, but not everyone. The universe conspires to bring special and important people into our lives. And that, my dear, is why we keep plugging along through the doubt, through the fear, through the unknown. You are an amazing and inspirational mom – you will find the light again.
My son attends the NEST program in NYC. It’s a progressive inclusion program for high functioning autistic children. This pilot program is run by the board of ed. They have a huge budget (almost a 100,000 per student)and they put it to great use; they have the best of the best teachers. Each classroom has a general ed and special ed teacher and they are rigorously trained by NYU. The NEST students attend SDI (social development intervention) for 45 minutes daily- this program is run by speech and OT therapists who are also NYU trained.
The classes are small so they really have the ability to meet each childs individual needs. My son has really flourished in the classroom. At the beginning of kindergarten, my son couldn’t sit for more than three minutes without needing some sort of break, now he’s a social butterfly and participates fully in class. I couldn’t be happier with the program.
Hi Kyra,
your post brought tears in my eyes.I wish I had the perfect school for fluffy. I wish you could check out Dessis school here in LA. I wish you would be my nieghbore we could make that school……
Bea
Hi Kyra,
your post brought tears in my eyes.I wish I had the perfect school for fluffy. I wish you could check out Dessis school here in LA. I wish you would be my nieghbore we could make that school……
Bea
Hi Kyra,
your post brought tears in my eyes.I wish I had the perfect school for fluffy. I wish you could check out Dessis school here in LA. I wish you would be my nieghbore we could make that school……
Bea
Hi Kyra,
your post brought tears in my eyes.I wish I had the perfect school for fluffy. I wish you could check out Dessis school here in LA. I wish you would be my nieghbore we could make that school……
Bea
Sorry to send you the mail 4 times, My computer us out of it
Bea
i wish i had some words to say, but i too leak anxiety. so, yes to all of it. your expression of motherhood is felt miles away, i hear you. i just wanted to say that.
I, too, would move anywhere for the right school, for the right environment that would embrace my boys while simultaneously shield them from the outside world. It is simply a mother’s instinct and strongest desire to protect them and we do feel ourselves powerful in that regard – until we’re not. I so completely feel this post, Kyra. I hope some answers are made clear to you soon.
Oy… This is a difficult subject for me. It haunts me every day, the fact that my daughter seems to “normal” for this and not “normal” enough for that. I look forward to the day when she’s comfortable enough with herself and has found supportive friends that will relieve that feeling. I can’t help but think though, that that isn’t likely to happen for many years.
Feeling between homes and not with home — am hearing you and the feeling of now what, now next and _argh_. Still wish I could have kept on carrying Charlie and whisk him away to safety; now all I can do is to walk next to him and I don’t often feel I send out the “mom-protection” force field I wish I did.
somewhere there is a place, a school, i am sure of it. and Fluffy knows he can relate to you and does, yes? and to Dave? and with that as a foundation, he’s more than ready. hang in—–
Mother worry, mother worry. It never goes away. Sending good thoughts for all of it, the house, the school, a social world for Fluffy. Just all of it.
“It isn’t about wanting my kid to disappear in the crowd, it’s about wanting him to appear in the crowd”
it’s amazing, how difficult it is to mesh with crowds, the mechanics of it. the problem seems to be the clumping tendency of people. any time there is more than two people in a setting, they immediately begin to form clumps…to stand around in little circles that are almost impossible to break into. people in groups always devolve into a game of Red Rover, it’s very odd. i usually feel am impulsive desire to tackle someone, try to make a space.
a better solution: i think someone should invent a social anti-coagulant. something you can spray in the air at social gatherings to prevent the clumping effect. make it a little easier for the unmeshed.
anyway. i love your writing, kyra. you write like a painter. de Kooning maybe? vibrant, aggressive, vulnerable movements. perfect, perfect.
I am sending love from here and cheering from the sidelines knowing all the while that your instincts are fierce and always right. Love, love, love.
sending lots of love and hope for clarity to come your way. trust your instincts as much as i trust your instincts.
That’s the trick, isn’t it. Before they can either blend into or stand out in a crowd, there has to BE a crowd.
Hoping we can create our own crowd this fall!
I wish I had a gajillion bucks so I could buy the house, build the school, move us all closer to one another.
It sucks, this uprootedness you feel which surely Fluffy must feel, too. His striving for independence and relationships while not quite knowing how to go about it. I have no answers. Only love. Lots and lots of love. And the utmost faith that you both will find your way again to a comfortable new place —together and apart. xoxo
Oh Kyra. You said it all. And so beautifully too. Sigh. Thank you for cutting through the perpetual dumbness of judging a mother’s motivations for wanting her child to connect socially. Relationships are the core of life. We want this for our children because we love them, plain and simple.
May everything good happen for you and you family in this next little while.
I understand. I hear you.
Love.
I understand. I hear you.
Love.
I do understand this post so much! My son is doing better but still has a long way to go.
WOW…as usual…so very well written and said Kyra!
I totally understand, many tears here. Sending you hugs, I love your posts.
I totally understand, many tears here. Sending you hugs, I love your posts.