and never is a load of crap

When we got home from Brooke’s chorus concert last night, I posted the following on Diary’s Facebook page:

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Brooke’s friend, Becky, who is not in the choir, came to the school tonight to see Brooke sing.

Becky, like Brooke, is autistic. Sitting through an hour-and-a-half-long band and chorus concert is not an easy feat.

But she came, as she always does, because, as she told me tonight, “Brooke asked me and she was excited so I wanted to come.”

When her mom needed to head home with her little brother before the show was over, Becky asked to stay with us. “I have to see Brooke after,” she said.

The whole way home the girls parroted one another. Brooke ran through a favorite script at warp speed and Becky followed along, echoing each line at Brooke’s prompting. When we pulled up to her house, Becky asked if it was okay to hug Brooke one more time before she got out. As they hugged, she said, “BFFs,” and Brooke happily echoed, “BFFs.”

As we pulled away, I looked at my girl, still smiling, and said, “You have some really wonderful friends, kiddo. You’re very lucky.” After a moment I added, “And they’re very lucky to have you too.”

“They sure are,” she said.

When my girl was three years old, we were told that she showed “no interest in engaging with others.” That she was “incapable of joint attention.” That when she grew up, she was likely to live a “solitary life.” Those were the words the doctor used: A solitary life. Those were the words that never, ever felt right.

It was true that Brooke didn’t answer to her name. It was true that she had no novel language. It was true that she didn’t *appear* to be aware of her surroundings and that she made no *obvious* attempts to share enjoyment with others.

It was also true, and will always be true, that there is so much more to my girl — to EVERY human being — than meets the eye.

My girl has friends. Beautiful, fabulous, loving, generous, and yes, autistic friends. And they have her. And that doctor and her prognosis of a “solitary life” can kiss my ass.

{image is a photo of Brooke and Becky hugging after tonight’s concert. Shared with permission from Brooke, Becky, and Becky’s mom.}

I’ve written about Becky here before. About her relationship with Brooke — about how special it is and about how it has expanded to include both of our families. But there’s one thing I may not have mentioned. And it’s something that, after seeing your reaction to last night’s post, Becky and her mom wanted to share with you.

Becky, the little chatterbox in the back of the car last night, the one who has so often spoken up for Brooke, protected her, looked out for her, lent her the words to which she didn’t yet have access … Becky, the one who told me last night that she came to the concert because “Brooke asked me and she was excited so I wanted to come,” who asked to stay with us because she wanted to see Brooke after the show, who then ran to her to tell her what a great job she’d done and asked for a hug … THAT kid … spoke her first sentence at the age of seven.

Her mom, Mary, credits music with helping her to find her voice. She and her husband saw something in the way that Becky interacted with music and how she used it to connect with others. They found a music therapist – the same one that Brooke sees (and adores) now.

She was seven when she spoke her first sentence. 

I want to make sure that I’m clear about something. Not every child will ultimately speak verbally. For some, that’s simply not going to be a method of communication that works for them. And that’s okay. Everyone is different. And that’s more than okay. So I am not sharing this to assure you that every nonspeaking person will someday speak, but rather because I need you to know this: Now is not forever and never is a load of crap. 

Please don’t believe the nevers. Don’t believe the simply can’ts and the won’t evers and the “If they don’t by five they never will”s. Instead, believe in your child. Because as Mary said to me when she told me that she and Becky wanted to share this, “An autism diagnosis is not the end of it all.”

“Amen,” I wrote back. “Just the beginning of the journey.”

“You got that right!” she wrote back. “It’s one heck of a journey …”

The ellipse at the end of that sentence? It’s everything.

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{Image is another photo of Becky and Brooke, BFFs.}

 

10 thoughts on “and never is a load of crap

  1. I know this is true, but I need to hear it–not just for me, but for Baguette. We see so much growth in so many ways, and while it may not be growth on someone else’s schedule, it is growth on hers. And that’s what matters, because she’s the one doing the growing. She has new abilities, new ways to communicate, new ways to interact that work for her. Who knows what the future holds? I’m not pinning my hopes on anything, but I’m not ruling anything out, either.

  2. Jess, you have inspired me so much in the last few years. I have several family members on the spectrum, and finding you when I was wanting to understand them was a gift – because through you I found other autistic people who also shared their stories. That mixture of parent and autistic input is such a blessing, seriously.

  3. OMG, thank you. Your timing, as always, is perfect. After a completely failed attempt at a playdate tonight (as in, my girl after 30 minutes getting upset about not winning a Wii game and then decided she would rather be on her own… cue me entertaining a 9 year old for the next 4 hours) I instantly jumped to the thought that maybe our time for playdates was over. That our girl couldn’t possible have and keep friends. You’ve managed to remind me that that is just now, and I should never say never, and never give up. Thank you. You rock, as always.

  4. I wish there were so much more research into autistic learning styles and how the developmental windows that are often presumed (“if she doesn’t by the age of whatever, then she never will”) are basically meaningless for us.

    (Somebody might never do something because they’re fundamentally not wired for it, but not because they weren’t pushed into succeeding at it by some arbitrary age marker.)

    • The best source of information for that is autistic people. There are people like AskAnAutistic who specifically answer questions like that through research and personal experience. Often I haven’t experienced the things another autistic person is going through but our minds have similar processing styles so I can usually work out what will help.

      • Yes, thank you…I actually am an autistic person, and I know of these resources. And I treasure the fact that autistic people do so much to make information about our experiences available to people willing to go looking for it. But having this knowledge established by actual research could go a long way towards improving educational policy and therapy practices towards autistic kids.

        It is great that we have a lot of blogs. It is nowhere near enough, to, for instance, change the prioritization of what kinds of therapies get insurance coverage and what doesn’t, or what kinds of educational expectations for disabled kids get enshrined into state laws.

        And there are some people doing the kinds of research we need (Karla McLaren is one), but again, nowhere near enough.

  5. I really needed to read this today, as we prepare for holidays gatherings. The gatherings have become difficult and stressfull for my little guy. This post makes my heart happy though, and it gives me so much hope for my non verbal four year old.

  6. Music is also how we reached our guy. It was… It is… AMAZING!!! Even now when he’s stressed and/or trying to focus or to get “ahold” of the “elusive thread” which will “anchor” him to the world which he is reaching for… *** please see note at the end of this comment ***

    He sings the steps he needs to take or he beat boxes the process or will actually walk himself through a situation by singing instructions to himself.

    I’ve seen people look at him a little oddly when he turned away (not so) softly singing “I said hello to him and her and now I…” I just smile and walk away. If you don’t know why he’s doing that… You don’t need to know.

    When we started music therapy it was because he had so many other therapies and so many home programs and blah blah that we saw a $40/week opportunity for him to have a “safe break”.

    Little did we know that the “break” would be a breakthrough and then an all out breakout! The therapist explained to us that music is processed in a different part of the brain than speech/communication. It still blows my mind how he can “process” so many things with words just because they’re “sung” instead of “said”.

    I will NEVER underestimate this kid but in all honesty after 6 years of silence, I wasn’t expecting to ever say “slow down and take a breath”.

    *** note to autistic individuals*** I often HATE trying to explain with words on this screen what I “see” when “Hunter” is doing things. I hate it because I’m afraid I’ll offend you, hurt you or in anyway make you react negatively.

    When he’s trying to “connect” with us or someone else, it makes me imagine a frayed blanket flapping in the wind that he’s desperately trying to grasp.

    So often we NT parents really just don’t understand what our words really SAY to autistic individuals. It takes one of you clueing us in for us to be able understand…

    And in my case it’s your help… Your willingness to put yourselves out there… That has enabled me to reach my 15 year old but even more importantly to not hurt him when I’m trying to help him.

    And your help is when you say “hey!!!” To us or to someone else and we “lurkers” read it sometimes weeks later. So even when you think that the whining parents of autistic children are NEVER going to “get it”, please keep giving it to us…

    Some of those very conversations, the ones that made you “give up” on the parent you were talking to, some of those are what helps mamas like me “get it”. Thank you.

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