it’s for me

**

It had been a long, full, long day. Yeah, I know I said long twice.

We had walked (or in Mama’s case, more accurately hobbled) around the track at the Autism Walk. We – or at least the smaller half of the we - had jumped in the bouncy house until Mama finally had to send Miss N in on a retrieval mission. We’d played in the ball pit. We’d eaten pizza at ten a.m. We’d visited with Grammy and Grandpa DD. We’d gone out to lunch. We’d had a grand old time with Miss N and Yo, B! Hell, we’d even lost a tooth for good measure.

We – or the bigger of us at least - were ready for sleep.

We were lying on Brooke’s bed, snuggling together in the dark.

After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day – I wondered what she’d taken in.

Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.

Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?

Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?

Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?

Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.

Did the word sink in?

Did she connect it to herself? To us? To our family? To who we are?

Does it have any meaning for her at all?

Did she notice it that day? Over and over and over again?

“Hey, Brooke,” I asked into the darkness, trying to sound casual.

“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.

“Do you know that we go to the Autism Walk because you have autism?”

I was trying hard to sound cheerful – to keep the words light.

It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.

She didn’t answer. She was too busy fiddling with my hair.

I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.

“Baby, do you know that you have autism?”

I’ve asked this question before. I’ll ask it again.

It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.

Add that internal monologue to the list of my greatest fears.

“Do you know what that means, Brooke – when Mama says that you have autism?”

“Nope.”

She answered. On some level, I was getting through.

I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.

“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”

“Yup.”

“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”

She has the right to a community. If I can help it, my girl will know she is not alone.

“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”

I smiled at her, though she couldn’t see me.

“Right baby girl, I’m sure she will.”

She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.

I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.

We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.

And wouldn’t you know it? In the morning, under her pillow, there was Blue.

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26 thoughts on “it’s for me

  1. This reminds me of that episode of “Parenthood” last year, when the family walked but didn’t tell the son he was autistic, and he jumped up and yelled “let’s walk for all those kids with autism!”. The family struggled about telling him, and the advice given was “you’ll know the right time”. Now, it’s just a show…we chose not to tell our son at the walk, but our older son (and his friend knew) and we asked them not to talk about it. For us, the time isn’t right yet, but he’s only 4. Right now he has his friends in his class – some like him and some not – and we’ll always show him he’s not alone.
    (on a side note, I heard them say “disease” also, and I have to admit I bristled a bit too…we say “disorder” as well, but it might just be a matter of semantics…”

  2. Oh Jess. . . . tears again . . . . I wonder about this ALL of the time. . . . we hear the word all the time . . . . but what does it mean to the child affected? The siblings (older and younger)? Right now we are surrounded by people who love and support us, but what about those who don’t support what I am doing. . . . how will HE feel? How will he feel when he has FULL disclosure of what it means? How will he feel knowing that he is different? Will he appreciate everything we are doing for him to help him? Will he understand what life would have been like without the supports?

    The questions that you raise in me. . . . . I wonder about . . . alot

  3. I’m always so aware of the wonderful community you have right here, Jess. At the walk, I felt that community 20,000 times over. You guys are not alone and Brooke will never be either. She’ll get it. She’s our rock star after all.

    Love you all,
    Mom

  4. Another wonderful post… Some mornings I wake up looking for a reason to get out of bed… Posts like this give me the fuel to keep trucking’… Thanks so much to you and your family for being a part of our community unity!

  5. I am so proud of you, for, like, being such a good mom.

    This post stopped me.

    Our kids have so much to contend with. Some very, very heavy concepts. I remember that my biggest worry at her age was my First Communion dress. When I speak to my own daughter with autism, and we talk the big talks, I always walk away marveling at how hard they work, how much more they have to do – so much more than the average bear.

    So proud of the great job she did at the walk. xo

  6. one of your most important posts. This is one of the major ones, for sure. I read it like a good novel and couldn’t wait to hear what happened next. Thank you for writing, and being in our lives. XO

  7. Wonderful post, these talks are not easy. Lost tooth cancels out any other topic when you’re little. I could picture her thinking, “yea Mom, I know about the autism and all ‘cuz we’ve been through that, but HELLO I lost a tooth today!!” She’s just so darn adorable!

  8. It IS hard… and I think it’s a burden that we share that with other children who have bipolar disorder, arthritis and so many other differences. As Brooke becomes more self-aware, this difference/disorder becomes part of her understanding of herself.

    It’s so hard to provide that understanding- providing autism as a reason for difference but not necessarily an excuse. As a teacher, I used to see so many children who would say to me, “I have a disability. I can’t”, when in reality, they could. There WERE some things they couldn’t, but they made their disability bigger than it really was. They struggled with figuring out how different they really were. Empowering without weakening is a tough balance to find. It’s a hard fine edge that WE as parents struggle with- much less a child.

    Add one more to the list of ongoing challenges that autism brings… At least, you and she have community- and that helps with the understanding.

  9. The big questions; when to, how to tell our beloved children. My thought is to let the word “autism” be a regular part of our vocabulary. If a child has an “outward” issue it is talked about openly, right?

  10. Wonderful story, wonderful mom :) I agree with profmom, my son, who isn’t dx’d, may be on the spectrum, may not… I know it definitly takes an effort for him to hold it together. We just decided to do therapies and see where it went, to determine if that was needed, partly because of what profmom said, I didn’t want it to be an excuse, and most of all, I didn’t want teacher’s expectation of a certain behavior to produce that behavior.. I just thought well, we typically live up to our expectations, so I want his expectations to be high, it has worked for my son (he is in K, and mainstreamed in an alternative school) but now I am just stuck, so we talk about differences and challenges.. I wish someone had “de-mystified” the word to me a long time ago :) good job!

  11. COMMENTS AND CONVERSATION FROM DIARY’S FACEBOOK PAGE TODAY

    TG ~ Thanks so much for sharing this! I often wonder how I will tell my son he has autism, he is five and thinks he is a “normal” little boy. Sometimes even I think he is too. Any suggestions as to when the right time would be?

    KS-K ~ Thank you for making me fell so less alone in this big world.

    REPLY:

    Diary of a Mom ‎@teresa, i think it’s just another one of those things that we all need to feel our way through individually.

    our children are so dramatically different, and with the added layer of VERY different communication skills and conceptual understanding, there just can’t possibly be a single answer.

    a long time ago, i heard stephen shore – a very successful adult with autism – say that he was grateful that his parents had always used the word around him – that it made it ‘no big deal’ and helped him to understand his differences. i’ve always remembered his words, which is a big part of why i chose to start talking about it with brooke now, even though i’m not sure that it’s meaningful yet.

    i want us to own the word – to help her define its meaning FOR HERSELF as much as possible.

    if you’re interested, i posted about stephen shore and disclosure a while back ..

    http://adiaryofamom.wordpress.com/2008/10/13/at-what-cost/

    and @kate, right back atcha :)

    Cheryl ~ In general, children acquire meaning for new vocabulary by hearing it used in context. I’m sorry for my ignorance about how that might be different for children with autism, but my instinct is that freely and naturally using the word autism at home could give it a much more positive context than avoiding all mention would give it. Certainly, it would give any siblings without autism the freedom to talk about it, and that freedom would greatly dissipate any anxiety they may have about it. So many people go through life worrying they won’t know what to do in potential situations. But when a family talks openly about everything, that worry is replaced by “I know what to do about problems. I talk about them.” That knowledge is an enormous source of inner tranquility.

    REPLY:

    Diary of a Mom AMEN, lady. AMEN. (for a laugh on this topic .. this still cracks me up – http://adiaryofamom.wordpress.com/2008/10/24/those-poor-artists/)

    Cheryl ~ LOL, artistic!! Reminds me of my daughter thinking the “Torah Study” class I attend was a “Taurus Study”, because I drove a Ford Taurus at the time. I learned this, after switching to a minivan, from her asking me, “Mom, don’t you think you should go to minivan study now?”

    I think “M” said what I meant better than I did, in a comment here http://adiaryofamom.wordpress.com/2009/03/05/when-the-floodgates-open/:
    “the ideal situation…where she magically understands and accepts all facets of her sister…it’s a nice concept…a happy, rainbow-filled concept…but obviously an illusion. she will reach a point of acceptance precisely by expressing her genuine reactions, all of these tough questions. it’s just where she is, and if she were to keep it in, hide it out of a fear that it might sound inappropriate, then she would never be able to move further.

    some people have a problem with expressions like these. but it’s definitely a necessary part of real acceptance. the biggest fear would be that she learn how to say all of the right things, but keep the frustrations and questions to herself.

    that’s stating the obvious, but people…they get touchy about how people react to autism. and my sense is that the more we sanitize a topic, the less we communicate.”

    Your blog is an absolute fount of beauty, wisdom and love!

    MAM ~ ♥! ♥! ♥! this! We talk very openly in our house as well, my son is 4 1/2 and I know it has no meaning now, but someday it will and I want him to be ready. I am always shocked to hear people that wait years to tell their kids. I feel like they are doing such a disservice to them. But that’s just my opinion.
    about an hour ago · Like
    Teresa Grumbles Thanks everyone! I too always use the word autism around my son and will explain more to him as his receptive language gets better. Thanks so much for sharing the link. I guess I want my son to understand that being different is good and not something to be afraid or ashamed of, “different, not less” like Temple Grandin’s mom would say.

    JMM ~ We own the word in our house as well. No whispering or spelling it out. Its a part of our life (good or bad). Don’t you just love those conversations under a blanket? :) Pinkalicious is our Blue! LOL.

  12. I use the word freely. I do it mostly so BW will know that to us it simply a small part of who he is. I do also so his sisters will have grown up having heard it and it’s not some hidden secret for him to be ashamed of as some family members have indicated. This is our choice though. There are some kids who being told of their diagnosis at this time or a certain time would be detrimental or perhaps in a setting where disclosure is not in their best interest and I get that. But Boy Wonder is profoundly autistic and so to be upfront, I feel, is OUR best choice.

  13. I will never have to have this dialogue with my oldest child, which in a way I guess leaves him protected, somewhat insulated from any possible negativity. I will have to have it with my youngest, and I think a lot about how to do it, when to do it, etc. We reference Justin’s autism, just not sure how to approach it with Zach’s when his is so different. Would ‘ya mind if I pilfered most of your post when the time comes for that conversation with him? Yours seemed to go really well, I’d love to see the same outcome with him!

  14. It’s hard. We wonder and worry. And at some point she may go through rough patches with her identity, as Nigel did, but I believe that because we show so much love and understanding and appreciation of and for our kids that they will come out on top. Over the years, Nigel has moved from non-comprehension to questioning anxiety, from self-loathing to acceptance and calling himself “an autistic.” It’s definitely a journey – for all of us. xo

  15. I thought about that episode of Parenthood, too. Good episode.
    Although in the Parenthood episode I felt kind of sad that Max didn’t know. He seemed old enough to have the right to know. But I know it’s different for everyone. Personal choice.

  16. good, good stuff.
    the Walk prompted lots of discussion with Hope.
    but your post has inspired me to have that one-sentence conversation with Rhema as well. so what if she doesn’t seem to have the receptive language to understand. like Brooke, i have to believe she’s taking it all in. and she needs to hear me say, ‘Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Rhema.’

  17. Disclosure is on my mind all the time. It is so interesting to me to see how all the rest of you handle it. Like Kim, I also have two very different guys – making the issue so much more complex. I am working on getting to a more accepting place with autism before I have the conversation. For so long I’ve been fighting “a” instead of embracing it; it’s been a long road. It’s really tough when you view it strictly as a disabling condition. Those of us who have kids with autism that didn’t get blessed with high IQs or splinter skills have a trickier task with disclosure…

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