a river in africa

Last night, a reader wrote the following on Diary’s Facebook page:

I am recently new to following you and you are so much like myself. I have to ask , how long did it take for you to face things straight on? I know that we all try to not face facts for awhile and than one day it hits you and its like a light of fire that comes within to just defeat the fight and prove it to be wrong, to fight for our child with everything we got. Your posts have helped on days I thought that it was too hard. Thank you.

In trying to come up with a response, I searched my memory. I thought about denial. I thought about what it meant to come to terms with Brooke’s challenges. I thought about the struggle between me and Luau. I thought of him resisting the idea that we needed help. I thought of him dismissing my concerns, writing them off to what he called an unfair comparison to Katie, who was ludicrously precocious, “So this must just be what normal looks like,” he’d said. I remember screaming inside my head, “This is NOT what normal looks like,” and then screaming some more at myself for not fighting hard enough to be heard.

And then I remember thinking, who wants to fight to be heard when what we are saying feels like, “There’s something WRONG with my child”? Because saying that, especially when someone else is saying, “No, there’s not,” makes a mockery of our most visceral instincts, doesn’t it? To protect and defend our babies against anyone who would dare say they are anything less than perfect. And isn’t saying, “Something doesn’t feel right?” the same as saying “My child isn’t perfect.”? (No, but I didn’t know that yet.) To say that we need help feels tantamount to saying that we don’t know how to parent our babies. That we are failing at the one job that should be so natural.

And because it’s so easy to refocus the camera as we look back on our own history, as the tape rewound, all I saw was Luau. I saw him NOT telling the pediatrician everything that I’d asked him to say. I saw my anger and his simmering, then boiling, then overwhelming guilt for years and years afterward.

This is what I wrote back, thinking that the best I could do was relate her question to Luau’s experience.

@j, it’s a process for everyone. All that matters is where we end up – loving, supporting, and respecting our kids and honoring ourselves and our needs in the process. xo

And then while I slept, a new reader left a comment on an old post. And after reading her beautiful and generous comment this morning, I was compelled to read the post itself. And when I did, I remembered. I remembered my own denial. I remembered wanting to scream, “When I’d said we needed help, I didn’t mean my kid had AUTISM for God’s sake.” I remembered asking the doctor who first uttered the word, “How many kids do you see who you DON’T diagnose with autism?”

I remembered my insistence that everyone around us had clearly lost their minds because, hello? This is my kid. She can’t be autistic.

And I thought of my friend, Carrie, who insists there are no accidents. And I smiled, because for years now the universe has been conspiring with her to make me believe she’s right.

This was the post.

 

*

At brunch with family, October, 2005

I find that many of my friends remember the specific date upon which their child was diagnosed with autism. Many dread its anniversary, girding themselves for the PTSD that, to them, feels inevitable.

I often hear those same parents refer to that day as D Day. Or The Day That Changed Everything. And every time I hear it, I bite my tongue. Because I remember.

I remember the cold, industrial tiles of the bathroom floor. I remember heaving over the porcelain toilet, holding tight to its sides to keep myself from – from what? From being swallowed whole by my anger – at Luau, at myself – and my grief – for my girl – and my abject terror – because I didn’t yet know that in years to come when I heard people refer to that day as The Day That Changed Everything, I would have the same thought each and every time.

Everything?

Really?

What about your child?

Because I know now that mine was – and is – exactly the same.

She was – thank God – the same delicious, beautiful, creative, funny, generous, loving, quick-as-a-whip brilliant, and yes, torturously challenged little girl the moment after her diagnosis as she was the moment before.

Nothing – absolutely nothing – about her changed that day.

It wasn’t until years later when Brooke’s initial diagnosis was being changed from Autistic Disorder (also commonly called Classic Autism) to PDD-NOS that our beloved neuropsych, Dr Dreamy would look at me and say, ‘I’m a little surprised that you don’t seem particularly moved by the change in diagnosis. Many parents, whether appropriately or not, tend to think of PDD-NOS as a ‘downgrade’ from Autistic Disorder.”

And it would be all those years later that I would hear myself say by way of a response, “I don’t really give a crap what you call it, Dreamy. Call it Henry for all I care. I’m still going to call my precious girl Brooke when we go home tonight.”

But I’d be lying if I said that nothing changes on the day that you are told that your child has autism. Things DO change. And you want to know what changes most profoundly? You.

You change because on that day, you are handed a key.

A key to understanding, compassion, community (for you and more importantly, for your child). A key to becoming a better parent, a better friend, a better citizen – a better person.

And, most important in that moment, you are handed the key to the tool box containing the tools you will need to help your child.

Years ago, when I was still walking around in the shocking pink haze of denial, I remember saying something particularly absurd to a friend. Actually, I think I said it to a lot of friends, because my version of denial – the shocking pink hazy kind – requires lots and lots of loud, enthusiastic repetition.

But one friend in particular brought it up to me recently. She even told me that her husband had asked her at the time, “Um, do you think we should tell her?” and that she had said, “No, she needs to get there on her own.” She knew me well enough to know that I would.

What I had said was something along the lines of the following:

“You know, it’s just the darndest thing. You see, we got this totally outlandish preliminary diagnosis of autism. Gawd, that woman was an ass. I mean, it couldn’t be any more obvious that my kiddo does NOT have autism.”

I’m pretty sure this was the point at which I rolled my eyes like a teenager telling her friends that she can’t go to Key West because her mom is making her spend spring break with her grandparents. Can you Uh-Maj-In?

“But,” I went on, bright and sharp and chipper in my happy little pink bubble, ‘they DID give us some strategies that are used to teach people who DO have autism (read – anyone but my kid who clearly doesn’t have autism. Oh, and don’t mind her stimming over there in the corner, she’s just, well, ya know, obsessively looking for spider webs cause that’s what she does everywhere we go and I have no idea what the hell to do about it or how to even get her to look up when I call her name and Oh My God, I feel so %@#&ing helpless and I don’t know what this is; I just know that isn’t the way that it’s supposed to be and we’re both drowning) and man, those strategies they gave us are WORKING like nobody’s business!

So, to recap: Not touching the word with a ten foot pole, but Golly Gee Whiz, I sure am happy to have found the key to the tool box.

Nearly a year later when we finally managed to get in to Children’s Hospital for the ‘second opinion’ I had already accepted what I now knew was true.

If you’ve gotten to the point of having your child (or yourself) evaluated, there’s a reason. You might not be willing to face what that reason might be yet, but it’s there. Mine sure was, stimming softly in the corner, searching for cobwebs.

Autism is a word. And a word does not – can not – define nor predetermine a life, nor should anyone ever give it the power to limit one.

So when people say that on the day that they received their child’s diagnosis ‘everything changed,’ I say, “God I hope not.”

If we are parenting our children – any children – from a place of respect, over time our dreams for them will evolve as we find out who they are.

The father who wants nothing more for his infant son than to be a star quarterback might just find himself converting the attic into an art studio for the teenager who can’t throw a ball to save his life but paints like Monet. The mother who dreams of picking out China with a daughter-in-law may just find herself planning a wedding for her son and soon to be son-in-law. The mother who assumes her daughter will follow in her footsteps and attend her ivy covered alma mater may just find herself visiting her girl in her tiny flat in Paris where she’s chasing her passion for French cooking. Dreams evolve. They must.

But please – I’m begging you – don’t let your dreams for your children change the instant you hear the words, “Your child has autism.”

Let them evolve as you find out if he’s a quarterback, a painter, a poet, an inventor or a chemical engineer.

Watch her. Follow her lead. Be patient. She will show you her strengths. More slowly than you might have thought, but they will begin to unfold. Because EVERYONE has strengths. And when they emerge, encourage them. Foster them. Build new dreams around them. Together.

And if you’re facing that day – the day when it’s not unlikely that someone in a white coat will say those words that will send you reeling, please remember this – As much as things may feel different, they’re not.

Walk with the word for a while. Worry it in your hands, let it sink slowly into your heart. And know that as hard as it may be to take hold of it, do.

Because it holds the key.

 

30 thoughts on “a river in africa

  1. February 15, 2013. I had accepted the label before the official diagnosis but the date stays with me anyway. I will say that our daughter *did* change because she became much happier once we stopped trying to make her someone she was not.

    Evie was a starting over baby. My other two children are much older so I was plagued with,”I don’t remember it being this hard!” I thought it was my memory being faulty or that I was ‘too old’. My older two were precocious so I, too, assumed Evie’s ‘quirks’ were what ‘normal’ looked like.

  2. I remember almost getting in knock down drag outs w my ex bc he dared mention that word in connection w my precious baby…screaming at him to stfu unless a Dr said it…and then a Dr did…

    And I found you and others and the autistic adult community and I learned and I grew…and now he’s the one in denial

    Love the part about whatever you call it when we get home we’ll still call her Brooke

  3. I stumbled on this page accidentally a long time ago and always was impressed by your writing and humor. But today, you made my cry and prompted me to write for the first time. Because I am the you of this post. Today is the day it hit me and it’s because of your words. Six months ago, my son received a diagnosis of Autism. I laughed at the doctor. I told her my kid was bright, verbal and social and his “weird” behavior was just him being a kid. As we began intensive speech therapy to combat language loss and OT to deal with the sensory issues, I still insisted that his inability to handle crowds, change in routine and noise was not that much different than his Dad, who prefers to be home with a book to almost anything else. We called him sensitive and sweet but laughed at the thought of autism.

    As I read your post, I looked at my “not autistic” child humming in the corner and reciting the names of planets at an almost obsessive pace, over and over. I called to him and got no response. I picked him up and he screeched and began to spin wildly and your words hit me like a ton of bricks.

    So I supposed the answer to “When did you realize and start to face things straight on?” would be….right now.

    Thank you

  4. I haven’t commented in a while, though I’ve been always reading, but to this post I must. This is the stuff that it’s all about. I dare say that this post here is my new favorite. Maybe because it is so timely, not for me, but for the newly diagnosed mother that I will be sharing it with today. Your succinct eloquence knows no bounds.

  5. Perfectly written! My son was 19 months old when we received the diagnosis. We knew before we went what we were going to hear. It wasn’t any easier- I cried for months over what I thought I had lost- about the ridicule my son would have to go through, about the loss of hope…but here we are about to turn 6. He is amazing, charming, funny, quirky! He is a gift to my family and though I never thought I’d say it back on D day, I wouldn’t change a thing!!

  6. Wow.

    I had no idea that it could be that hard for parents to hear the word autism.

    Thank you for explaining how you felt, Jess. It’s perspectives like yours that make me a better, more empathic person. I’m NOT saying I can’t be empathic, but like everyone confronted with a mind different from their own, I need people to tell me how they feel and think. And you do that so magnificently.

    I will try to keep your words on board. My parents are going through the same process, I think. The word autism is making them feel scared and defensive. I need to have more compassion for their feelings, and not only focus on what a giant relief it is for me. I will keep my positive attitude but I will make more room for their negative emotions and support them in any way I can.

    I wish their English was good enough to have them read this.

    • (Just a short aside on the empathy thing: I love your posts showing Brooke’s empathy. Because the whole “lack of empathy” thing makes me SO ANGRY. It’s not lack of empathy, it’s lack of explanations, it’s assumptions that we should “just get it” without being told. As if you’d ever assume that a child could learn maths without any explanation.

      In my entire life, I’ve only met TWO people who could instinctively sense my emotions and thoughts without being autistic themselves. To everyone else, I’ve always had to explain. And even then they sometimes didn’t get it because I was simply too different from them. So neurotypical people having natural, instinctive empathy is in my opinion just as untrue as autistic people having a lack of it).

  7. Although this life experience has made you grow in ways that you never thought you would or could, as your father and your baby’s grandfather, I so wish you never had to. You and “we” are all better for your knowledge and your way with words but
    still I wish you didn’t have to.
    Love you,
    Dad

  8. It’s so hard for parents when the picture in your head of autism is Rain Man, and only the outcome you hear is “no hope”. But Rain Man is not the full picture – it’s one tiny brush-stroke on a huge mural of what autism is. Autism run’s in my husband’s side of the family. I think his uncle and dad are undiagnosed with aspergers. His nephews are on the spectrum as well, in different ways. So I knew the possibility was there. But I also knew many different pictures of it, and our son was verbal/affectionate/made eye contact enough that we didn’t notice – but at daycare they saw the quirky, the differences. They said – he MAY be “just a boy”, “just a bit behind”, or there could be “something”, why not get the evaluation?

    Part of me knew, even though I didn’t want it to be, because I knew it would be hard – I knew parenthood would be hard, and I just didn’t want it to be harder. I didn’t get to see much of the evaluation, and he looked just like any other kid would behave during what I did see. Until one point when he had too look at the camera for a picture and he looked to the right of the evaluator’s face in such an obvious way, that was just “off beat” enough that in my head I said “OH!”. It was a minor thing, but it was so different and I saw the difference for the first time.

    But really, nothing wasn’t “different” – DS is still himself. He thinks differently, looks at the world differently. I have to work a little harder (and so does he) to make the world easier for him to understand. Thanks to Jess and Autisticook and others, I’m working to help the world find it easier to understand HIM and (hopefully) other autistic people.

    Acceptance isn’t giving up – it’s another tool that helps you deal with reality and challenges, that helps you connect with the person instead of fighting. Fighting is angry, and the people we love pick up on the anger even when it’s not directed at them. Love and respect get you through – and like Jess says, following their lead.

    • Acceptance isn’t giving up – it’s another tool that helps you deal with reality and challenges, that helps you connect with the person instead of fighting. Fighting is angry, and the people we love pick up on the anger even when it’s not directed at them. Love and respect get you through – and like Jess says, following their lead.

      Amen.

  9. I don’t think it’s an accident that you and Brooke got each other, think of the work the two of you are doing in the world – powerful and amazing!

  10. For me, autism has facilitated acceptance more than perhaps I would have with a typical child, because I see so many parents push and try to their mold into their own interests, or into sports they wish they themselves had been good at, or into being bolder than they themselves were as children. It’s as if parenting, for many, is either chance to “do over” your own childhood, or a chance to relive your childhood, with the whole “I just want them to be happy and loved” thing we all claim is the ultimate goal in parenting as an afterthought. And with autism, we as parents are given a precious truth that many don’t realize until much later: that our children are who they are, with unique gifts and challenges, and our only job is not to mold them into who we think they should be; our job is to love them and accept them. That’s it. Autism has tested me in how I really feel about my children in a way that my friends with typical children are never tested, and I’m so grateful that I had to really look at my children through the lens of unconditional love and acceptance. My goals for my children are really no different after a diagnosis than before diagnosis: I want them to be conten and I want them to love and be loved. Isn’t that what everyone wants for their children?

    • And with autism, we as parents are given a precious truth that many don’t realize until much later: that our children are who they are with unique gifts and challenges, and our only job is not to mold them into who we think they should be; our job is to love them and accept them.

      yes. emphatically yes.

  11. Pingback: Three years later | Outrunning The Storm

  12. Jess, every day I read your blog, I want to scream “YES!” from my rooftop. They are so cleverly crafted and infused with the perfect dose of love, humility, and humor. You are the voice inside my head and very often the echo inside of my heart. Today’s post was a shining and brilliant example of that and quite possibly one of my favorite entries to date. xoxoxo

  13. And….I’m crying. It’s been almost two years since my boy was given the offical diagnosis of Asperger’s Syndrome. But I knew. I knew even though it had taken me 11 months to finally give in to the testing, because I didn’t really WANT to know. I knew when, at 6 months, my beautiful boy started stimming. I may have not known what the crap “stimming” was, but I knew in my heart that something was different. I remember sobbing and screaming “why!?!” And then, one day, I realized that if given the choice, I wouldn’t change a single thing about this precious child of mine. Not one. Single. Thing. And that realization has, in a way, set me free. Free to celebrate and embrace the amazing person that is my son. Free to advocate and nurture him in the way that he deserves. Autism is one of the most terrifying and, yet, amazing things that has ever happened to my family. I will never apologize for or hide who my son is. Because he is truly an inspiration and the most wonderful little boy that I have ever known. Thank you, Jess. For your daily reminders of love, and above all, hope.

  14. “If we are parenting our children – any children – from a place of respect, over time our dreams for them will evolve as we find out who they are.” Began learning this in the classroom many years ago, and try to live it every day with my own, not because they have autism, but because it’s the right thing to do. Loved this!

  15. when i was diagnosed with Asperger’s at the age of 30…at a point in my life when i was depressed, in a state of years-long social isolation…i just felt terribly bitter. it felt like a cruel joke, to go through all of that only to find out that 1. a diagnosis had been missed for so long and 2. it was something i’d always live with. it was a rough experience, and even to this day i struggle with some bitterness. (i’ll never be able to comprehend how lucky i was to speak with a therapist who had inhuman patience…who was willing to wait out my angry reaction. that certainly helped)

    but you are exactly right: diagnosis is a tool. people can react however they want to the various words and labels, but it’s a tool…and if used in a constructive, careful way, things can improve in ways you never would have guessed on the day you received that diagnosis.

    i was able to get back on track and use the new self-awareness to slowly begin creating a game plan. the diagnosis…not something i’m happy about every day, but growing past those initial feelings and sorting through that tool box made all the difference. so i found this post to be very moving.

    i wish every parent, on the day their child receives a diagnosis like this, could be handed a copy of this post. you’ll save lives, writing like this jess.

  16. I remember the day we heard the “unofficial” diagnosis the GP gave my granddaughter. My son had asked for months if there was a chance she could be autistic. The Dr. kept telling him that she was just developmentally delayed, she would catch up. Finally, on the day we took her in for an ear infection, and asked for a referral to a developmental specialist, my son asked if we were making the right choice in taking her for an evaluation. His answer, “yes”. His next question was, “if you had to guess what we are dealing with, what would you say”? He glanced over his shoulder, looked at my precious little girl, and said “autism”. He turned around, finished writing the referral, and handed it to my son. We put our coats on and walked out the door without another word. We felt as though he had just punched us in the gut!
    Three months later, she was diagnosed as being on the spectrum. A month after that, we returned from our family vacation, and received the diagnosis of being on the spectrum and having Phelan-McDermid Syndrome. The Dr. knew of the syndrome, but had never diagnosed anyone with it. Anger, Sadness, Fear!
    Now, 15 months later, we still have our days of anger, sadness and fear. Some days, I think it will swallow my son whole. But then there are the days that she brings him nothing but overwhelming joy. No matter what, she is the same sweet, happy, extremely active little girl. There are days that we have to remind ourselves that she has autism and Phelan-McDermid. She gets what is going on in her world, even though she is unable to communicate with us verbally. Her eyes and her actions show us there is a “normal” little 4 year old in there, she just has a different way of communicating with us, and may not be able to do everything on our timeline. We will get there.
    Thank you for your posts! Some days I feel as though we are walking in the same shoes! It helps tremendously to see Brooks accomplishments and growth. I feel your pain on the rough days.
    Thanks too for the book, I might be you. I have thoroughly enjoyed it! The prospect that Piper may have the ability to communicate with us someday, whether it is verbally, or with an assistive device, gives me so much hope. The prospect of her having all of that knowledge and so much to say, and never being able to communicate it, scares me to death!

    Keep doing what you do!

    Kim,

  17. Thank you so much for this post. It’s been a little over a month since I was completely bowled over as a pediatrician told me “I am absolutely 100% certain she is on the autism spectrum” and less than a month since we went through all the testing and got the official diagnosis and I went from knowing nothing about autism to reading everything I could get my hands on and beginning to think “oh wow, this is like reading about her…” Reading your posts after discovering your blog earlier this week make me feel so much less alone. Thank you so much for you writing.

  18. My oldest son has diagnosed with ADD back in the day when everyone had ADD. My youngest daughter was diagnosed when she was 2. I never put a label on my son because I knew he wasn’t ADD, but something was up. He never got a formal diagnosis, but I want you all to know that he is in his second year of college for nursing, is in the Army Reserve and works a full-time job at night. I spent many nights at the kitchen table with him doing homework, sometimes 3 hours, but one day it clicked and I let him take the reins from there. I am the PROUDEST momma of him (and my other two kiddos). He still don’t go out a lot, does not drink or party, but he is happy with the way his life is going and so am I.

  19. Once you said and it fits me like a glove: “my journey is imperfect, my evolution woefully incomplete… but i´m getting there”. I think you arrived.
    Amen for this post!

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