save draft

I spent some time yesterday skimming through a few of the 226 unpublished posts in my drafts folder. Half-told stories, overly flowery drivel from my I’m So Poetic phase, even some rather Proustian stream of consciousness crap. A little something for everyone I suppose, and most of it right where it belongs (in post purgatory, never to see the light of day).

But then there was this, a draft of a post from February of 2010. No narrative, no story, just a conversation that I’d chosen to record and 3 words that I’d apparently written to myself thereafter: “breathe, jess, breathe.”

Even the lack of capitalization seems fitting. It’s not a command so much as a reminder, or, better, a plea: breathe.

As I read it all these years later, I also see the words that aren’t there, the ones I hadn’t written yet:

it’s going to be okay. you’ll get better at this. so will she. every day. 

breathe, jess, breathe.

This is the post …

the driver

what about the driver, sweetheart?

the driver about you

what did the driver do, brooke?

around

around what, honey?

around the about

around the about?

around the about the driver did

breathe, jess, breathe.

40450_427858389418_6668115_n

{image is a photo of Brooke peeling the bark off a stick, 2010}

12 thoughts on “save draft

  1. Brooke’s ability to express herself has been exponential through the years. She amazes me each and every day!

    Love you,
    Mom

  2. We have so many conversations that look just like this, and also plenty that make lots more sense, and also some that seem as if they are making sense and then tail off into goodness knows what.

    It’s constantly wonderful to me to be able to come here and find someone who speaks the same way, and has developed her language in the same way, as my girl. Especially wonderful given that none of the professionals here seem to know much about it. I even used Brooke as an example when our speech therapist called Abi’s development of language ‘unique’. It was so good to be able to say, “No, there is at least one other, and you can find her here!”

    Thank you.

    Also – I have been keeping a journal of all the many wonderful things that Abi says. Sometimes, I can look back over them and use the knowledge of the next thing her language did to work out what she was trying to say at the time. It’s really and truly fascinating.

    • I agree! My daughter’s speech developed much the same way, echolalia and then what seemed like word salad – a random selection of words tossed into the air and then picked back together the whatever way they landed. I also felt like she was the only one. She’s now 13 and has come so far that I sometimes forget those days. When Jess shares these moments it’s like getting a glimpse of my daughter’s younger self, and now I can honor and appreciate her in a way that was hard at the time, when we were so gripped by fear and lack of understanding. I don’t think I was as wise as Jess in those days to remind d my self to just breathe. I was consumed by panic and feelings of inadequacy. How do I help my child? My sweet, amazing, gifted child that struggles in so many ways? Now I see the amazing progress she has made, and with Jess and her ability to form this wonderfully supportive community I no longer feel alone. My best wishes and heartfelt support to you and your sweet Abi.

      • Jane, I love that word salad image! Just exactly what it’s like! And then there are the moments when she accidentally triggers an echo in herself and says something like “I’ll just turn the page” before she turns on the light. Thank you for your encouraging words. My Abi is only 5 and her language makes leaps and bounds all the time. Sometimes it can be so unusually expressive that it’s like living with a tiny poet 🙂

  3. When I read this, I fixate on roundabout. Are there a lot of those in MA? I know that is not the purpose of this post, but that is all my brain sees today.

      • Her words made me think that she saw someone get stuck going round the roundabout 😉 hopefully it wasn’t you guys. Those things are lovely when they’re small, but the big ones are intimidating – we have one here also – and I ALWAYS pick the road before the one I actually need. 😛

  4. I cannot wait till the day till I have a conversation like this. My son is 8 and most of his conversation are echolalia or repeatative stim.

  5. Oh I remember similar (but different of course) ‘conversations’ and I know exactly the feeling you were having. There are still times those thoughts pop into my head, but older and wiser and used to this life definitely helps. Love all your posts, even your drafts 🙂

  6. I really wish I could hug you, because you make me feel so much less alone in this journey. It is really hard for us right now, but I know it will get better. I have a 5 year old with an ASD diagnose that is 2 1/2 years old, and a 2 1/2 year old with an ASD diagnosis that is 5 weeks old. It isn’t even really my kiddos and the ASD that are stressing me out. It is the ignorance and refusal to understand their special ways and needs, that I keep encountering with the agencies that are supposed to be supporting us. My 5 year old is beginning to build original thoughts into sentences from his Rolodex of scripts, yet everyone but myself seem to dismiss his attempts to communicate as mindless jibberjabber. I feel like I am going mad with desperation to get people to listen, and value what my kiddo has to say….even if it doesn’t fit the formula for functional speech. It takes a bit of decoding, and that is why I have him in ASD support. Thank you for sharing. I cry tears of relief often after reading your posts and knowing that we are not alone. Thank you ❤

  7. Our girl found it very difficult to speak, but every so often she would ‘echo’ a word that she had just heard (I described it as a single word kind of getting out ‘under the radar’).

    When Halley’s Comet showed up in the night sky a number of years ago, we were all out on the front lawn looking at the sky and someone in our group said, “Amazing!”

    Amber said, “Mazing!” It kind of worked like that.

    A few years later, having seen this kind of thing happen a number of times, I woke up one morning with a realization – or the possibility of a realization.

    After breakfast we had the following dialogue:

    “Sweetie, I’ve noticed that every once in a while you say a word just after you’ve heard someone else say it.”

    Amber just watched and waited…

    “I’ve always thought that you did this because it was easier to say if you’d just heard it.”

    She watched and waited…

    “What’s just occurred to me is that you might be saying it at that moment because you know it’s easier for us to HEAR.

    She exploded with delight and gave me a huge smile.

    She’d been using this ‘echoing’ as a deliberate communication strategy for years, and I finally got it.

    Breathing lessons,
    David

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s