part of the whole

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{Image is a beautiful, chaotic splatter painting containing many bright, vibrant colors – yellow, pink, orange, aqua, blue … and black.}

Firstly, thank you all so much for your birthday wishes yesterday and for sharing in the joy of my surprise celebration. It was a little crowded with all of you in my kitchen, but it was a delight to have you there. :)

Secondly, I have a huge, awesome surprise for YOU tomorrow. Stay tuned. I kinda can’t wait to unveil it. Even better, it was not my idea, so I did none of the thinking, just the sharing of the awesomeness. My favorite way.

Thirdly, last night, a reader left a comment on my post about Brooke saying that she is glad that she is austistic. (Emma, for the record, it’s Awe-STIS-tic). This is what she said.

If there is a way to help my son feel like this please share. I feel so bad and don’t know what to say to him when after a blow up he’s crying and asking why God made him this way …

This was my response.

For us, it’s finding and focusing on the positive aspects of autism and pointing them out as they happen – her amazing memory, her recall of scripts and shows, her ability to mimic voices and accents, (edited to add: her intense, singular passion for the things that she loves), her unique perspective on problem solving etc.

We point those out all the time and we talk about how awesome they are and that they are directly related to autism. That way when the hard happens, it’s just one aspect of the whole. And we also are very careful to show her that a lot of the things that are hard for her are not actually autism – her anxiety, epilepsy, these things aren’t autism per se. They may often ride shotgun so to speak, but they are not part of her wiring.

I hope that helps. It’s not easy stuff.

This morning, I went in search of a post I’d written last year. Once I found it, I knew I had to republish it. All of it. Because it can be really, really hard to believe what you can’t yet see.

This is Unwrapping the Gifts, December, 2013 …

 

Stereogram_Tut_Random_Dot_Shark[1]

 

It is October of 2008.

 

I am sitting across the table from John Robison, having dinner. It is the first time we have met. He is speaking about the “gifts” of autism. He is telling me that he knows that with “little ones like [mine] it can be hard to spot the gifts, unlike it is with adults like [him.], where they are far more obvious.” I am working hard not to be defensive. He is, as far as I can see, nothing like my daughter. He has Asperger’s. She has classic autism. He speaks beautifully, eloquently articulating his experiences and sharing his inner world. She struggles to find words for her most basic needs.

 

My child speaks in scripts. Novel language is almost non-existent. She repeats sounds, echos the ends of words. Her ability to parrot what she’s heard is almost eerie, but doesn’t do her a whit of good in making herself understood. I can only guess at the internal workings of her magnificent brain, at what she thinks, feels, likes, wants.

 

I watch her fight day-to-day, moment-to-moment. To communicate, to interact, sometimes, to just BE amid the sensory onslaught of a world that is too bright, too loud, too chaotic and far, far too unpredictable. We spend a lot of our time frustrated. And heartbroken. None of these are gifts.

 

But John’s conviction in his assertion leaves little room for debate. If he says there are gifts, so there must be, says his delivery. I want to believe him, but “gifts” feel like a hell of a stretch. “They might even look like challenges now,” he says.

 

Frankly, I’m not even sure I know what that means.

 

It is November of 2009.

 

All three of the Wilson women (one big, two small) are down with the Swine flu when I get a call from the girls’ elementary school principal. She’s sorry to bother me over the Thanksgiving break she says, but there’s something she simply must share. I will later write the story that she tells me.

 

The week before Thanksgiving, there had been an all-school assembly. The stage had been set up with a microphone to address the students. Brooke and her aide had apparently gotten to the auditorium a few minutes early and little miss had found the microphone.

 

The principal said that as people made their way to the assembly, they were stopped in their tracks just outside the auditorium. ‘This little voice was just so incredibly clear,” she said. A buzz began to gather steam in the hallway.

 

“Is that Brooke?”

 

“Doesn’t that sound like little Brooke?”

 

“That’s got to be her.”

 

Inside, a little girl stood on the empty stage. She sang into the microphone, loud and clear. And if I know my kid, right on key.

 

The song was the one they’ve been learning in music class. Of course it was. What else could it possibly have been? It’s just too perfect.

 

This little light of mine.

 

I’m gonna let it shine.

 

Let it shine.

 

Let it shine.

 

Let it shine.

 

Shine on, my sweet girl, I will write. Shine on.

 

It is September of 2012.

 

I am writing our annual Back To School letter to both new and returning staff. I include the following:

 

[Brooke] has taken to watching her Nick Jr shows (most notably Dora and Blue’s Clues) in French and Spanish. She loves to tell people that she speaks Spanish, and well, she kinda does. We look forward to encouraging her emerging love of languages. She has picked up a startling amount of Spanish from Dora. 

 

It is  November of 2013.

 

Ms J tells us that Brooke has auditioned for a solo in choir. She says that as soon as Ms S made the announcement that the kids could come up and try singing alone, Brooke’s hand shot into the air. She tells us that Brooke sang the song that they’d been working on for the concert — which was in Hebrew. I am not even mildly surprised by the news, but I can’t stop smiling.

 

It is a week or so later.

 

Luau and I are at the school for a meeting with Brooke’s support team. We find out just a moment too late that Brooke is in the auditorium for Music class. As soon as we peek in the door, the kids begin filing out. One by one, nearly all the girls who pass us say some version of the same thing. “Did you see her?? Brooke was awesome!!”

 

We missed it by a minute. Ms S had asked for volunteers to audition for the solo for another song. This one was in Spanish.

 

It is December of 2013.

 

I am in Texas on a business trip when I get an email from my girl. Newly instituted in her IEP, these emails come every day now. Ms J’s brilliant way of including Brooke in the daily communication log, they have become an incredible learning tool, and, for me, the very best part of the day.

 

Hi Mama,

I had chorus today. I found out I got to be a soloist for the concert. I was so excited to find out. I did not have kids connections with Ms C because she was sick. How are you doing? What is your high? What is your low? That means what is your favorite part of the day and your not favorite part of the day. Talk to you later.

XOXOXOXOXOXOXO,

Brooke

 

I will write  back, “Oh baby, THIS is definitely my high!”

 

It is October of 2008.

 

I am trying desperately to believe John when he says that there are gifts in my daughter’s autism. That they might be presenting themselves as challenges. I’m trying, but no matter how hard I try, I just don’t see them. Everything is a challenge. How can a challenge BE a gift? It’s like a bad riddle.

 

I have no idea that much like the image in a stereogram (those plays on visual perspective that we all remember from childhood in which you could only see the picture within the seemingly random pattern once you managed to relax your eyes), the gifts of which John speaks really are right in front of me. I just have to stop trying so hard to find them. I have to relax my eyes, open my ears, unclench my fists, and, above all, rely on my heart to show me what I need to see. Then and only then, will the image emerge from the chaos, deeper, richer, and more beautiful than anything I could have imagined. And right there all along.

 

Oh, and that picture up top? It’s a shark. I don’t see it yet. But I know that someday, I will.

 

Ed note: Thanks to Fred Hsu for allowing me to share his beautiful image.

 

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16 thoughts on “part of the whole

  1. It’s great traveling back and forth and taking in Brooke’s growth over the years. …and has there been growth! WOW!

    Love you,
    Mom

  2. Another beautiful entry. I can only imagine how wonderful and awe inspiring these developments have been. If I heard either of my girls singing beautifully (not a skill that is prevalent in our family) I would be mesmerised. My girl, my youngest, is four, non verbal, with epilepsy, learning difficulties, self injurious behaviour and autistic. When I read this, I initially thought ‘I can’t wait till she is older so that we can all see her gifts’. But no, I won’t wish this time away, time goes by too fast as it is. Does she have gifts? Right now? Well, we haven’t heard her voice, she can’t communicate beyond smiles, angry shouts and leading by the hand. She doesn’t play and hasn’t demonstrated any memory skills. But yes, I believe so. This is where it can sound like a parent’s wishful thinking. But I believe with my heart she has gifts. She can stop you in your tracks, make you do things you never thought you would do in public. Gallop down the street, sing for all to hear, gaze through the trees at the sky. (Actually I did that before she was born, always have, just further proof that she was destined for me. As her big sister tells me, they chose me). She seems to know when someone needs a kiss or a cuddle. At four years of age, she still cuddles on my knee every night before bed, cuddles right in with a smile on her face, my favourite part of the day. She seems to look at souls rather than people, probably saying all she needs to say with her eyes, giving the other person time to respond and only turning away, unperturbed when nothing happens. She has the most contagious laugh and often looks at me as though sharing her laugh, her smile. She’s generous like that.
    I hope, as I do with her big sister, that the future holds many gifts, some from within, some from without and I hope I don’t miss them. I can’t separate her from the autism, it is all part of her, and without doubt, Jocelyn is a gift and it feels like she is slowly sharing her gifts with the lucky ones, the blessed. We are blessed indeed.
    Thank you for always providing such hope by sharing your stories. I know it’s not all good or easy, I know. That’s why it is so important to hold tight to the good, no matter how small or fleeting. Hold tight to the gifts.

  3. Thank you for giving me hope. Hope that my daughter will find her way to communicate and enjoy life…even if I have years to work in her progress.

    I overheard people citing your blog in medical office while talking about autistic kids… You are famous!

  4. Thank you. I needed this today, a reminder to see the gifts, and also a reminder that when I am in the trenches of day to day it’s hard to see the growth and changes. Have to celebrate somewhere, my Matt (age 6) just slept in his own bed for the whole night for the 7th night in a row! An easy to acknowledge totally amazing I feared it never would happen kind of event, since he’d only made it all night maybe three times in his life.

  5. I’m hoping that as our kids grow and there is more embracing of their differences (note: not acceptance, EMBRACING), providers of higher education and in turn, employers will continue the evolution as well. I’d love to see recognition of our beautiful and very capable (thankyouverymuch) offspring that takes shape as them being educated in a way that is best for them as a rule, not as an exception, or being hired as an asset to a company rather than a “good deed hire.” I loved Unwrapping the Gifts the first time around, and I’m grateful for the reprise and reminder. xo

  6. Great post, great advice to the reader. Everything is part of a larger whole and it is sometimes so darn hard to remember. Your ‘unwrapping the gifts’ parallels my recent experience with breast cancer. I was determined, hell-bent even, NOT to be grateful to cancer. When I heard women say it was the best thing that ever happened to them, i wanted to close my fingers around their necks. But now, a year or so out, I can see that is has left me many gifts– a more ready appreciation for life’s little joys, a better understanding of how i work both inside and out and an embrace of the idea that i, like everyone else, is on a one-way trip through life. A great and specific expression of a universal theme. Thank you for it and for the whole blog. Wish I knew your kid.

  7. Another beautiful insight into the complex person we know as Brooke. Having read back to the early posts, I can well understand your fear and frustration and, well, questions. Fast forward to where she is now, and I think what John said is coming true, more so every day. Brooke is an incredibly gifted girl; her gifts are so abundant that they had to be wrapped in the complex mesh known as autism. As she finds her path to the world in her way, she will continue to amaze those of us who read “Diary”. And we will be right there with you (in spirit, at least) to be awed by her.

  8. I love this post. So, food for thought: I have a seizure disorder. I would hate for people to think of me as an epileptic first and everything else secondary. I like pink, not because my brain sometimes has some fireworks, but because I like pink. I know it’s the whole person first argument and I’m on the other side of the coin on this one. I respect the decision anyone makes to want be be known as autistic first (diabetic, epileptic, artistic, doctor, lawyer, whatever) but I would like to think that some of my thoughts and decisions, likes and dislikes have nothing to do with the fireworks in my brain. Does Brooke’s awesomeness come from being Brooke or being autistic? Maybe both. A friend of mine once said to me, after watching me have a seizure: “You know, I look at you like a many faceted gem. There are a lot of things about you to love. Now that I have seen you have a seizure, I just got to see another facet. ” I look at my own child that way, too. The autism is another facet to the gem that is, well, him. I wouldn’t change this gem I have been given. But, and this is me (and I understand other people wanting to define autism differently), I also see other facets to him. No judgement.

    • anonahulamaunaloa, i love that. one thing that comes up over and over again in conversations about person first language (and why it’s typically not preferred by autistic people) is the fact that autism is a pervasive condition. it affects EVERY aspect of one’s experience of and interactions with the world in some way, which is why it is such an important aspect of one’s identity. rather than one facet that has no more or less import or effect on the whole than the others, perhaps it’s better described as the color of the stone :) the color doesn’t take away anything from all the other factes, but it’s threaded throughout each of them in some (often beautiful) way.

  9. This post made my eyes water. I follow your blog and I’ll admit I don’t read every post, but I’m so glad I got to read this today. It touched my heart. Thank you for being brave and sharing your writing and your life with all of us. It’s is a beautiful labor of love and body of work.

    • wait, you don’t read every post? well, i’ll be.

      (KIDDING)

      thank you for your kind words. i’m glad you were here today too :)

    • John,

      Absolutely. I find that, just as you said, some of the very things that presented as challenges for her then are now, when in the right environment, strengths (ie where echolalia was once (and sometimes still is) an impediment to communication, it’s also an amazing tool that she uses in learning new languages, singing on key, remembering songs quickly and easily, etc. I will always be grateful to you for the wisdom that you shared with me that day and on so many days after – even that which I wasn’t ready to understand. 

      woof

      J

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