Autism Diaries: The Things we Say

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It’s taken 3 years in Autism land to feel stronger about some of the things that are said in regards to my son’s Autism.

Often there would be pain kicked up by the most well-meaning of conversations or in the most casual of statements from friends, the public at large, or even family. I wouldn’t always know why they hurt but some nights my pillows could be soaked with the residue of the things we say. The words. The polite conversations we’ve had.

This is an excerpt from early days. I abandoned it, my nice girl felt like it was too direct, too angry perhaps, but I am so grateful that I came across it. It is the literary equivalent to probing a new and suddenly appearing triceps muscle where one had not been before and a flashing my emotional guns. It’s not the pretty me, but that is okay today. These are the Autism Diaries after all its good and its bad. Guttural and hard is as valid as beautiful and flowing. These days I know so much more about both things.

February 12, 2011

NicholasWhen you aren’t sure what to say, then just let a companionable silence carry the day. Don’t tell me about kissing horses in Mongolia and the magic of that, unless you are talking to me in sight of my private jet. No, I didn’t read about the latest studies in Scotland, even if I did, I really need to wait for peer reviews and again, unless there’s that jet, don’t. Just don’t.

Don’t tell me about rhesus monkeys with electrodes connected to their brains that were exposed to the MMR vaccines developing Autism. What on earth does that do? I am here in the now. I cannot keep up with Scotland, Mongolia, and monkeys. Literally, I know the meaning of I’d do anything for my son. But, I have no jet. No bank account left to speak of. Living in today and providing therapies has taken a toll. These things, these developments in science and magic and therapy–jiggle on a guilt you can’t even imagine. Besides I immunized. I made a lot of choices about my kid’s health. I do a lot for him, like that. I am also constantly wondering what I could be missing and if my failure to be in the fortune 500 is costing my son everything. Ask yourself before you tell me about this–How long before these wonders can get to me? They won’t. That’s your answer.

In the old immunization debate, I am out. Period. I made the best choices I knew and I won’t entertain the question anymore. In short, while I am probably aware, or will be flooded through inbox and texts soon I have no time to give much devoted thought to them right now.

Don’t tell me how you always knew my kid was not normal. If you lacked the needed energy to tell me then, when I was baffled and confused, then you’ve absolutely no right to insert yourselves at any point after. If you didn’t risk feeling something of my pain, then–stay out of that part now. Secondly, normal is a word guaranteed to clang hard on my tender ears. Lastly, you are no smarter than me for noticing it, but perhaps just as chickenshit and every bit as human as me for not risking something in the “then” when it might have mattered. Chew some gum or salt water taffy anything to get your mouth past its urge to say this. And remember, one shouldn’t speak with their mouth full. If this feels necessary to say, consider keeping your mouth full.

Don’t be so sure what Autism isn’t. Or is. Humble yourselves just a little bit–if neither my neurologist nor our family practice nor groups like Autism Speaks nor a legion of people so smart you’d be absolutely amazed–us the parents ourselves–do not, are you so grandiose to believe that you do? If so, submit! Submit to the NE journal of Medicine and call a summit, but don’t stand in front of me, I’ve no power to book your speaking engagement.

Do not say anything at all starting with Einstein or Bill Gates or Temple Grandin or their mothers–zip it right there. It hurts to hear about them. It hurts in a moment that perhaps until you spoke up might have been perfectly lovely. Maybe I was reveling in the simple awesomeness that you’ve called me and saved me from myself and my usual day. Now I am sitting here measuring my son against Einstein, Bill, & Temple. I’m feeling that ache that is empty and full all at once. You see, even if my son does catch up, he’s not there yet and that’s a lot of work living in TODAY it’ll take to get there. Don’t diminish my todays with Einstein’s success. Put your words to use instead, and inhabit this moment in my reality. You’ll quickly see why tomorrow doesn’t matter today.

Be assured I’ve heard about the evils of gluten and that some people feel pretty sure that had I not been so aged at 34 when my son was born, this wouldn’t have happened. I know about vaccines. Yes, Autism is misdiagnosed sometimes. Some people think it’s the diagnosis du jour and nothing more than a made up word for bratty kids and bad parenting. There are people who believe that. I am aware of them. Certainly genetics play a big fat role. Maybe even the entire answer is right there! But, then again maybe I was too thin or too fat. Maybe it was red M & M’s. Perhaps it was that I didn’t pray the right prayer or face the correct direction while saying them. It doesn’t matter anyway. What I did or didn’t do that may have triggered this. There’s nothing I can or even would change now–I’ve gone and fallen in love with him just as he is. Since I can change nothing, I am very interested in debating– nothing. I am here in the now, doing the best I can.

Don’t tell me about studies put out by Kellogg’s or Hasbro, or anything starting with “I saw on Wikipedia”, yep, we’ve looked there too. Oh, and yes! Jenny McCarthy is amazing! But, she’s not here and did you know she hates mothers like me? She calls me a victim and a person who is enjoying my son’s struggle. Yep. She smiles with gleaming teeth, hawks her hastily spackled together science and Swiss -cheesy logic and cures and books. And she hurtles these comments about women like me just before funding another shriek fest at AutismOne by posing her gorgeous store bought boobs in Playboy. So before you tell me, did you know she’d surely not give even a half a shit if you told her about me?

There are a gazillion sleek and shining pop-up storefront theories and studies out there. Maybe one day the answer will be there. Until then I submit to you that live birth is the single biggest triggering factor for Autism! Seriously, breathing is a uniting factor and its found in every Autism case! How helpful, even while true, was that?

You can skip telling me about the “new study”. Why? Because, next week there will be a new study out that’ll catch a wave. Dog hair and flea products in contact with skin, or standing near a beached dolphin by the ocean causes it. Plus, I’ve heard it, and even if the truth is in all or some of it. It doesn’t minimize what I am engaged in doing today.

Here’s what I’d think should be said to me about the portrayal of Autism in the movie Rainman:

If your statement begins with how these children are beautiful descendants of a rainbow and gleaming Wicca God and of crystals and are here to teach us—stop! NO really STOP. Because let me tell you, yep, I think they are gifts and we are being taught a lot by our beautiful children. But, some of these gifts will never be reached. They will not be, despite slavish dedication to Dr. Wakefield and living and raising them like Temple Grandin’s amazing mom and pouring every dime they have–even if they are very special people chosen by God or their children cry tears lit with atomized rainbows—even with all of that–some will not EVER be reached. Some parents will never hear “I love you”. Some parents will never sleep a full night’s sleep again and will live in homes that are on a constant state of lockdown in an effort to keep the child/adult who is teaching them safe from running out into the street and standing in front of an oncoming train. Some parents will ache to their bones from hours-days-weeks-years spent trying to stop their child who is teaching them from banging his/her heads against the wall or against the parent themselves. Some of these children sent to teach us will outgrow their parent’s ability to provide care as they age. And unthinkable decisions will have to be made about placements. They will love their kids without bounds with resilience anyway even if their determination goes unanswered. Think carefully if that is the thing you think needs to be said, the crystal child sent here to teach us–

I miss so much about the carefree days of “Yes! I can meet you! Yes, let’s go…” “Sure— Oh…..I miss it! Break out the taffy one more time if you are thinking to say “I can’t believe that he has so much therapy!” Zip it. Zip it —good. He does. Please just trust me. The suggested amounts of ABA are 20-50 + hours per week divided between home and school. But, there are also SLP, OT, PT and a million other choices of therapy “du jour” which if money allows–I’ll probably try, if they do no harm. Though I may not make it public because sound of raindrop on leaves-nature aromatherapy  or sound integration of harpsichord and butterfly wing therapy, sounds just so “Omg, hOpeFul and gRanolA and KuM bA yaH”  Here’s a secret, much of the time I don’t care what the therapy is called  or what it promises to do–I just mean to engage him. I’ll try it, even if very quietly. And don’t forget about the *(&^ing horses, for craps sakes–the one’s everyone loves so much. Duh, of course he’s signed up. In short? When I say therapy–yeah, I mean it. Therapy, time, effort–there’s lots of it.

Please don’t compare your typically developing child’s behavior to mine or say anything resembling “Oh, Bobby does that! I wish I had this “therapy“, for Bobby, I could use the break and the help!” First off: No you don’t. You do not wish this on Bobby. Secondly: It’s not the same. It’s not. Unless Bobby engages in SIB from time to time in intense cycles that will come and go (and if you don’t know what that means, that means Bobby doesn’t engage in SIB) or screeches nonstop or makes shrill whistle sounds, and no amount of re direction will prevent it, or if Bobby doesn’t grind his teeth until they are chipped away or open and shut door for hours and hours on end, then Bobby isn’t the same. If Bobby can point, ask for a drink, pull your hand to ask for help, look you in the eye, call out for help, or answer a yes or no question, darling–Bobby– most certainly is not the same. Lastly, where is the break in 6 days a week? Where? So, stop. You do not wish this on yourself, at all. It’s not funny, really, even though I know you meant it to be– and it’s not a good way to connect with me at all.

Resist trite statements like “God only gives us what we can handle “Or “God chooses special people for these things”. They probably make you feel better, but not so much me. Statements like that can cause me to feel chided for feeling tired, or overwhelmed, or for feeling a sadness or loss sometimes for the “dream of perfectly normal” for my son. They cut me off as if I am being told how to feel or that I am perhaps letting God down for feeling tired or overwhelmed sometimes. Or they can prevent me from even making a start at sharing my experiences if you open a conversation with that.  That statement may cut me off altogether, but my feelings are still there even if you’ve cut me off. It’s not said to help me anyway; it’s you who gets comforted. Speak to your counselor if you need help getting over my circumstance or if you feel a need to have everything make perfect sense like this. And besides, I call crap.

God isn’t in charge of Autism. He does not pick and choose which child or parent to select on some kind of Suessian whim. Autism is a condition of being human, that’s all. Autism even genetic or understood forms of Autism–just is. God just is, or isn’t– however you choose, but Autism doesn’t fit into this pretty box, it’s just not that neat. God loves us through and we can tap into a greater purpose, but He’s not in charge of Autism. There’s nothing about me that elevates my ability to handle this over you– or anybody else.

And no, God doesn’t line the kids up who have Autism or Downs or MD or Asthma or Leukemia and wait around patiently for the right mom and dad to come around. He’s not tapping His foot looking around for the blessed parents. Erase the very idea please. No, there’s not a backlog of special needs children waiting for just the right parents. Besides, God doesn’t line things up, but Autistic kids might!

After you’ve had your say there are some things I’d like you to know. I am doing the best I can and it’s a lot of work. I am navigating a very misunderstood ship, but I love my kid. Nothing would ever change that. I want him to be happy, first!  I am trying to find the balance between giving enough of what will help him be the very best that he can be and letting him plunk rocks in rivers and float sticks in puddles. So when you hear about these new things and wonder if I’m aware or if I’ve tried them, please know that I am doing the best that I can. But, I am equally doing my best for my marriage and for my other child. The world cannot stop for Nicholas, as much as I’d give–oh, what I’d give to hear him speak. I have too many other promises to keep.

What you need to know is that I love my incredible kid.  Same as you love yours. Same dreams. Same hopes. I do love to talk about him–after all many of my own personal dreams are hovering in a holding pattern under a thick layer of faith and hope somewhere in baggage claim. I am his voice and advocate now, sometimes I am the sole voice of reason, standing between him and unbelievable nuttiness of “treatment” options. So, yeah, it consumes a lot of me. This has become a very important part of my purpose. That much I do know. I am fiercely proud of my son! If I could, I would crow. I welcome questions and interest.

I want to hear from you. I also want to share parts of myself with you. So engage me! Talk to me about the movies you’ve seen! Talk to me about the silly things. Tell me about your kids too. Ask me to go! Even if 9 out of 10 times I have to say no to something. Or take me shopping with you, like we did in the old days. Send me pictures of the two bags you’re torn between and let me feel as if I am there with you. There’s also asking me to do something with you a space of time out! Say things like—“Hey, what day in the next week or two might be good for me to come grab a coffee with you?”

Forgive me for not seeing things exactly as you do or for not being as strong or as wonderful as all the other special needs moms. Forgive me for my failings, for my obsessions, for forgetting to get back, for saying “I can’t” so much, for my anxieties, for my sorrow sometimes, for my funky hair and for being distant sometimes. Do that for me and I’ll forgive all of that and more for you, even the things you say. I’ll forgive us all for being so delightfully, so perfectly imperfect–so beautifully human.

And then if you don’t know what to say there’s always what I opened with. Say nothing at all but let your silence be friendly and full of good wishes or say to special needs mothers like me—-“I don’t know what to say. But, I just love you.”

Hey, how about that?  I just love you—

Now, that? Well love, now love—that never ever fails!

1 Comment
  1. Stacey says

    Love it .more every time I read it!

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