context

***

It’s been nearly a week since the party. And yet still, I haven’t managed to write about it.

There’s the easy part to write, of course. The good stuff. Even the huge, really momentous stuff.

There’s the fact that my girl sat through an entire movie. In a theater. For the first time EVER.

There’s the fact that she calmly asked for breaks when she needed them. And that she needed only three of them the whole time.

There’s the fact that when a baby cried in the theater her only reaction was to ask me to take her out into the hallway where she said no more than, ‘I don’t like the babies.’ (Unlike her mother’s reaction, which was more along the lines of Who the hell brings a baby to a movie theater?)

But that’s not it.

It matters. Of course it matters. The fact that she was able to attend a birthday party at a movie theater matters. It matters a lot.

But if that were the whole story, it wouldn’t be taking me a week to write this post.

You see, as much as I want to offer up the victory of making it through the movie – as much as I want to celebrate it and score yet another one for sheer determination, I can’t bring myself to do it.

Because as proud as I was of my girl that day, it’s just not the whole story.

Because the story, like all of them, has a context.

And the context of this story was difference.

It was the lack of comfort on my baby’s face.

It was the other little girls dancing and chatting and jumping and giggling together.

And my girl.

There, but apart.

It was the gaggle of girls at the cake table sharing secrets and comparing camp cheers.

And my girl. Eating her cake. At the other end of the table. Alone.

It was the look on her face as she tried to make her way into the gaggle and failed.

So open, so joyful.

As she tried to get them to mimic her putting her chin to her chest in a move that simply didn’t fit in.

As she simply turned and quietly walked back to her seat.

It was the fact that none of them seemed to even notice her attempt to join in.

It was the way that her expression changed as she sat down again.

It was the way her face went blank, into a wan half-smile.

A smile I’d never seen before.

Her eyes – the eyes that light the world on fire when she laughs – were nowhere to be found in that smile. They were somewhere else. Far away.

That smile scared the hell out of me.

Because it was the first time that I have ever seen my baby girl look like something other than herself.

She looked like she’d donned a mask. A vacant, half-smiling, socially acceptable mask.

It was terrifying.

It scared me for the future. It scared me for the days ahead as these same girls start talking about boys and clothes and music and gossiping behind each other’s backs like I know they will. Like Katie’s classmates do just two years down the line. Like some of these girls already do. It scared me for middle school when the rules no longer make sense and the social scene becomes unwieldy and treacherous for even the most savvy of players.

It scared me for that moment in and of itself. The one unfolding right in front of me.

It scared me because she just looked so God-damned different from everyone around her and because for the first time, I truly wondered if perhaps she knew it.

And then scared turned to sad. And that is where I lived.

I watched a little girl from her class approach her as they ate their cake. She spoke slowly and exaggerated her words.

“Brooke,” she asked, “what was your favorite part of the movie?”

I watched as Brooke took her time to answer and then finally said, “I liked the jelly beans!”

I watched her friend trying to process what she might have meant. I even watched from somewhere else as the voice that helped explain that the ‘jelly beans’ were Brooke’s way of describing a group of characters in the movie turned out to be mine. I watched myself from afar – a mother stepping in with a well-rehearsed prompt to get her daughter to ask her friend what her favorite part had been. And then I watched that little friend, so sweet for coming over, walk away awkwardly as the conversation inevitably fizzled. I watched the mother smile at her. Her smile was tired.

I watched the real story unfold. The one beyond the great progress that my girl has made. The one behind the daily celebrations and the happy horsesh*t that I spread here every day.

That’s real too; don’t get me wrong. It’s very real. And it matters too. More than anything, it matters.

But the backdrop stays the same.

No matter how much we focus on all of the positives, the fact remains.

My baby is different.

Really different.

And no matter how hard I try, or SHE tries, or we ALL try, her life will be hard.

It was all there, right on her face.

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42 thoughts on “context

  1. Yes the hurt and worry is a constant backdrop the day that my boy and your girl at like party years from now we have to believe that home run will come and communication will be appropriate sigh

  2. Jess, you don’t know yet just how far Brooke will go. I’m not trying to blow sunshine up your ass, but you just detailed a bunch of progress she’s made, and then are going on to say that her life will be hard because she’s still socially behind at age 7. Her social development is delayed, not stunted. Not halted. No, she’s probably never going to be the social butterfly that Katie is (heck, I wasn’t and I’m NT as far as I know), but that doesn’t mean she won’t find her tribe. Maybe not in 2nd grade, maybe not in 3rd, but she will find it and her life will not be hard because she’s so different from *everybody* else.

    A lot of girls who don’t have autism never are part of the giggling groups of girls who gossip and talk about clothes and boys. That reality is reserved for only the select few.

    I feel so lecture-y here, I’m half-tempted to not hit submit, but I’m going to press forward because I don’t want you to think that Brooke’s happiness and ease of life is going to come in the form of being part of typical girls click at school.

    Even though I fear this sounds lecture-y to you, please know that it is written with nothing but love in my heart for you and your family.

    • nicely put but full of crap. my daughter is 14 now. and she may be very similar to brooke. and i have an 11 yr old daughter too. it’s easy to see that “brooke” will not fund a tribe. it’s also easy to see the daily progress and milestones reached. and easy to see that she might be able to assimilate and participate in social situations, which is the greatest progress i now realize i can hope for. she will not find a trible. she will definitely have a hard life. and my 11 yr old is very worried that when i die, she will take over. even though i tell her she doesnt have to, she will. and maybe my 11 yr old wont have a difficult life. but “brooke” in fact will. it’s nice that you have love and i love how you worded your reply, but it’s crap.

      • i completely understand and respect both perspectives here. as a matter of fact, i often live both of these perspectives, often within the span of an hour.

        and, as is my usual m.o., at the end of the day i find myself somewhere in the middle.

        i do believe that brooke’s life will be harder than her typical peers in part because, contrary to goodfountain’s phrasing, she does not have a developmental delay (social or otherwise), she has a disorder. i believe that’s an important distinction to make.

        because autism is a developmental disorder, she does not necessarily ‘catch up’ as it were, she develops in her own way and, by definition, in her own order.

        (i talked about this concept here ..

        http://adiaryofamom.wordpress.com/2009/08/13/but-wait-theres-more/#comments

        … and addressed it in depth in comment #12 on that post if you want to get into more detail.)

        and although i completely agree that we can’t forecast her future based on who she is at 7 (any more than we could have when she was three and we were told by her first neuro-psych that she’d live a solitary life), i do think that when a child is not just different than her peers but also faces significant hurdles in communicating in the most basic ways with them, it is challenging at its best. as much as we may be able to give her the tools to mitigate the challenge, she will not ‘grow out of’ autism. it’s part of the fabric of who she is.

        however, i also refuse to believe that she won’t ‘find her tribe.’ i’ve said very recently that i believe that there is tremendous power for this generation of children in not only disclosing, but re-claiming the autism label. the whole post is here ,,,

        http://www.hopefulparents.org/blog/2010/6/17/theirs-to-define.html

        but the crux was this ..

        “What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we can give them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group – this incredible group of people – this group that can so easily feel so desperately isolated from their peers – what if they found out that their differences, in and of themselves, are not so damn different after all?”

        i truly believe that with some help, these kids can find each other and thereby understand that they DO have ‘a tribe’ somewhere out there in the world. and i think that matters.

        unfortunately though, they may well be the only member at nearly every cake table.

        thank you both for your heartfelt comments.

  3. You’ve just written exquisitely about something I constantly try to convey to the people in my life, and usually fail to do- that no matter what successes we have with Justin, no matter what the progress made, there is always, always, always, that backdrop. Beautifully put, and thank you for sharing this with us.

  4. There are a lot of us whose kids’ lives will be hard – harder than for most other kids. But everything that you’re doing, and that we’re all doing to help our kids, will help to make it a little easier.

  5. I love you for having the courage to post this. Is it weird for a virtual friend to say that? I felt all of your words, and have even lived them. I’ve stood there and looked at Jack the same way. Just thank you, as always, for sharing.

  6. Thank you for sharing this post with us. I know it wasn’t easy. But, please, know that even though we don’t know how to put it nearly as well as you can, our stories are the same. We have been there and we have seen that smile. All in this together, as incredibly difficult at times it may be.

  7. I can’t imagine even trying to explain this to other parents – parents who don’t have kids with autism – it’s unbearably painful at times.

    I know, and everyone here knows, exactly what you are talking about.

    I could say that it gets better, or that it changes, and it morphs.

    That she’s amazing.

    But the truth of the matter is, you hurt for your kid.

    I’m sorry you had one of those days.

  8. thank you for this post. i feel guilty that i am not rejoicing in the triumphs every minute and that i feel so sad when i see that my daughter will never be able to relate to peers. yet, she is realizing her potential and i know that left to her own devices, or the school districts, we would be nowhere. i need you to keep telling me how it’s going and what you are thinking about it all, because i’m a bit lost at times and need you to help me sort it all out. so thanks. <3

  9. Thank you for sharing. This is tough. My son is 9 and I have seen slow but steady progress. I can get him to go to the parties now but he still stands on the sidelines. I long for the day when he has a friend.

  10. Jess, your pain washes over me and you know how I feel about it. And your worry becomes my worry just because I love you. I want to echo the words written by Goodfountain above as they are very wise and real. I think you are, naturally, analyzing and projecting Brooke’s present and future reality through the lens you look through – your experience. It makes sense but it is not the only lens. There are many, many people who do not “fit it” with the obvious crowd for one reason or another. Above that there are many more who look like they do but never feel like they do. And then there are people like me who just do not even care to fit in. True happiness is born through connection with people who love you and Brooke has that connection now and will always have it. Some people need connection with many. For others (like myself) the love of and connection with just a few people is enough to sustain true and complete happiness. It is fortifying against the hard stuff of life. I found my people over time and hold on to them (and let the rest go). I believe Brooke will absolutely do the same. Please accept this on faith while you keep pressing on with all of your tremendous work with Brooke and the community within which she lives.

    I will not accept any blatant prediction that Brooke will have a “difficult” or “hard” life. Nope, I will not go there and you should not either. A life with difficulties and challenges – yes, because I have never seen a life without difficulties and challenges. But a “hard” life (whatever that means) – Nope – Not happening. I would like to hear John’s input on this and other adults with autism.

  11. You know what – I just realized the my post refects only my life seen through my lens. Maybe other people find happiness outside of human connection. Maybe it is not for everyone. I am not suggesting that this will be the case for Brooke or anyone else but I want to acknowledge the possibility.

    Again, I would value John’s input on all of this.

  12. You are so good at describing my feelings and the perpetual knot that resides in my gut. My daughter is 11 and entering Jr.High next month so I see it every day. The lighter side is that when my friends are absolutely distraught over which girl in the gaggle said some nasty comment to their daughter, I am relived. My daughter has been spared from this cattiness. There are perks to being on the outside looking in.

    That doesn’t make me feel any better or loosen the knot, but I gotta look for a bright side or else I sink.

  13. It’s interesting how we see things so differently when we have children who are different. We see the world different. People’s reactions are different. We go out in public and people stare at our child – even though to us, they are just being themselves, other people see them as different, so they stare. In the situation above, it’s interesting how other children try to interact with our child then give up so easily. It’s like they have no patience. You’d think since they are a child they should have patience, but they don’t. Do we have patience because they are ours? Or because we have to. I don’t think I handle some situations with my daughter very well, but I’ve been told I handle them quite well. I guess we all have our own ideas of how our child should be disciplined. But this story made me realize that I too, have seen this before and felt the scared/sad feelings that come over you. It’s different. It happens. It’s our life.

  14. Yes, what DM said. I am sorry for the pain you experienced, and the way it haunts you.

    love.
    love.
    love.

  15. I also feel this pain, times two.

    Rejoice in the positive from that day. Praise Brooke for her bravery and efforts. This just reinforces that Brooke (and you) have work to do, but it is NOT impossible. Look at how far she has come. It’s not fair, but think of what a strong woman Brooke will be one day.

  16. Jess, I feel like sometimes you are in my head and living my life… I have had these same kind of days…2 steps forward 1 step back. I am here to give you hope, however. My son Jared is now 13. Not that long ago he was where Brooke is now. Yesterday, we had a day that I thought we would never ever have. My daughter and younger son were off with friends as they seem to always be now. The phone rang and….(tears in my eyes) it was for Jared! 2 friends called and he wanted them to come over (because this is his comfort zone of course). They came over and played video games and ‘Risk’ for 3 hours! Jared has been all about parallel play forever but he is learning to share ideas and get along with peers. Of course, it helps that these 2 friends have ‘issues’ and are in his Sped Camp this summer…but they are friends! As I listened to them play in my livingroom, I cried! I truly didn’t think it would ever happen. Their bikes against my fence was the most beautiful site I have ever seen. It will be hard no doubt, but it will come together for Brooke. I believe that! That party had to be really hard for her and yet she did it! I’ll bet she thinks she had the best time ever!

  17. Oh Jess, we are all walking this horribly rocky, pothole filled road together. I wish I could say it gets better but from my experience with my 9 year old it just dont, heck it gets worse. Girls are brutal and mean and just plain horrible! My 9 year old had a really good school year she made a good friend with a little boy in her class, they played video games mostly but it was a friend and he would call her on the phone and my heart would dance listening to her talk on the phone with him. I had a glimmer of “normal”, and then she became friends with a girl in her class, and WOW the 2 of them would come over and play and talk and man I was so happy and excited for her. Then summer camp started and the little girl was in her group and I did and dance because she would have a friend and then, that friend turned on her. Watching her walk up every morning and standing there alone and awkward and out of place kills me a little bit inside every single day. I have high hopes for her, I know she will find that ONE good friend, that is all I want for her, someone to stick by her side through thick and thin, to laugh with, someone who understands her quirks like I do and her sister does. I know all of our kids will find this one friend and they will become parts of our family and will snuggle up into another place in our hearts.

  18. I never cared for popular music, only once had a crush on a boy, and my mom still has to help me pick out my clothes. I do not fit in with a gaggle of girls, unless there are just a few and they’re all old enough to be my mother and baby me. Short of a few years in middle school, I’ve never WANTED to fit in with the gaggle. I’ve always wanted one close female friend. I have Leigh, and I’m happy. Now, if the gaggle of girls fit in with me based on MY rules and MY likes and dislikes, I might be more interested. Maybe Brooke is thinking, “I’ll try this to fit in. Hm, that didn’t work. Oh well.” Maybe she’ll discoer that she would rather be herself than learn to change herself to fit it.

    My mom (who knows everything, just so you know) says she’d pick me over a regular (read: nonautistic) girl anyday. I bet you (and Katie, and Luau, and even Winston) feel the same about Brooke. And I bet that someday she finds a friend that feels that way about her too.

  19. Oh Jess, I’m so sorry for what you’re going through. I know how hard it is; most of my darkest days have been spent in exactly the same place.

    E has developed something that sounds like Brooke’s look — whenever I think he feels slighted or bewildered or excluded and I ask him what the matter she says “I’m fine,” in an extremely casual yet studied way, with a fake smile. It’s as if he’s reassuring me and maybe himself. Coping, I guess.

    I took a lot of comfort from the comments here, in particular what April said. I hope you will, too.

  20. oops, sorry Jess, that comment from Siteunseen was me (Redheadmomma) – I’m signed in as siteunseen for Niksmom’s blog :)

  21. For me so many of those moments of fear are inextricably linked to my own disappointment and grief; both always another ever-present backdrop to this journey. Thanks for keeping it real Jess.

  22. These really are the hardest and hearbreaking situations to be in with our “different” (if you will) kids.

    I remember Temple Grandin “Different but NOT LESS”. It eases me.

    Just wanted to share.

    Coops Mom.

  23. Thank you for posting this Jess. You’ve encapsulated what really brings me to my knees sometimes.

    Love.

  24. I think it’s hard to balance the anxieties of any mother who sees her child excluded, and the anxieties of a mother facing autism. We grieve, and clap at the same time.

    I think the important factor is Brooke- is she happy? If she is, then there is no problem- even if we might define it as so. Is she trying to fit in? Then our job is to help that. A parent of a child with autism gets to follow our child and help them solve what they see as problems- not always what we see as problems.

    It’s an interesting balance- one captured with your last post and this one- is she choosing pink because that’s what all of the other girls are doing, or because that’s her individual choice? Is she standing on the sidelines because she’d rather be in the middle of things, or, once again, is that her individual choice? Is she learning what makes her happy and comfortable?

    And yes, it hurts to be so close… and yet so far.

  25. I wish I could give you a hug- and then get one back. The victories our children have are enormous and we rejoice and revel in them. The differences however, the DIFFERENCES….they can crush our hearts at times. You are SO not alone but you know that. I share your fears, your tears, and also ( though some days they are harder to see) your triumphs.

    Since you wrote your post of a few days ago – the one about your trip to the art museum with Katie- the idea you put forth has stayed with me, SO close to my heart. The one paralleling the DSM definition of autism to some of the GREATEST MINDS in history- from artitsts to Albert Einstein. I’m sure they had vast differences from those around them, how could they not have? BUT… well, the world would have never been the same without them. Those very great minds, those very DIFFERENT minds, they were nothing less than great. It is so hard somtimes, this parenting of a child with autism but perhaps the fears we have for our kids socially don’t really bother them nearly as much as they do us. Of course there ARE some really black days. Blacker than black at times for us, but possibly to them those days are merely cloudy?

    When the sky is at it’s darkest, we can see the most stars.

  26. I know I’m late to the party (busy week!), but I just wanted to put in my two cents. Yes, she will always be different, and I know how hard a pill that is to swallow – I see it with Nigel, and as he gets older, it is always apparent – still. But he has found his tribe, and they have found him. It’s a different connection, a different interaction, a different way of relating than what Aidan and his friends have. I see it so clearly, and it hurts so much. I definitely know where you are with this – sometimes the difference is glaring, and so sad, especially when you start to think that the self-realization is dawning on your child they s/he is different. I will never forget the day that Nigel asked, “What’s wrong with me, Mom?” and how I tried not to cry in front of him. It’s a long, hard road, but we’re making it through, and Brooke (and you) will too. Love.

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