Life’s (in a manner of speaking) a Beach

Dawn walk with Charlie On Sunday Charlie woke up at 3.30am or thereabouts. This proved to be a good thing—we got in a good run/walk around 6am—as a cold, sometimes freezing rain fell for the rest of the day. Charlie has definitely rediscovered the YouTube search engine and, I confess, a bit too much time was spent sitting on the old blue couch watching videos (did get in some typing practice). We also made one of our (way too frequent) trips to the grocery store (though we did go to a store, Trader Joe's, that Charlie has refused to set foot in for the past year). And, with buckets of rain falling down, we visited Jim's mother in the nursing home, where Charlie pauses for a long time at the door to make sure there's no (therapy) dogs; I have been pausing myself every time I see the Santa mannequin by the player piano. (This Santa is more than size of 6-year-old Charlie.)

Throughout the day, Charlie was in good spirits and communicating lots. There were about two minutes when that wasn't the case, when I tried to explain why we couldn't find all of the video he wanted to see on YouTube due to "copyright restrictions." Jim looked at Charlie, I shut the laptop and placed it on the floor. Charlie stayed where he was and moaned, sniffed, asked for the computer. And that was that. 

A little stir-craziness has to be allowed for.

It was, despite the bad weather and being cooped up in a relatively small space, a lovely day, the three of us together. That's not much to report and yet I can't say it enough, especially as one still reads too often about how we should fear a "silent tsunami" of autistic adults, about how unbearable and awful life with an autistic individual is, and especially if that individual has "behavior problems" of the sort Charlie has had. About how raising an autistic child must be a "burden." Life raising Charlie is for sure rife with challenges, setbacks, moments of worry/despair/fear/more worry/you name it. And I can never say it enough: For Jim and me, life with Charlie is good, so good—maybe not the proverbial "beach" exactly, but something pretty close to it—that it's something we would never want to miss out on.

I mean, I've no idea what we would do without Charlie sitting with his legs tucked under him on the old blue couch, typing letters one by one as I realize I've forgotten, yet again, to remind him to wash his hands. And how important it is, really. Keyboards can be washed and laptops turned upside down to be decrumbed, but Charlie all attention to type with his index finger, is a sight I can never tire of beholding.Charlie turns the bathtub into the beach  

One new sight I did see on Sunday evening was in our bathroom. Charlie had brushed his teeth and, prior to turning on the water, ran out and reentered with a plastic beach ball. Earlier (as in 5am-ish) this morni
ng he'd found an old case of Hot Rod cars and, I don't quite know why, put all of them into the tub, turned on the water, and had a nice splashy time with the ball too. (I know, it was 5am Sunday morning, but I divined that Charlie would be fine with this activity, and went briefly back to bed.) I wasn't surprised when, in the evening, Charlie asked to take a shower and then went to retrieve the ball and all the toy cars.

But I wasn't expecting to see him standing, ball in his hands, in the tub while wearing his swimsuit. "Are you playing you're at the ocean?" I asked.

"Yes," said Charlie. And told me to go out, which I was happy to accede to. I relayed what Charlie was doing to Jim, who said, 

"Whadda guy."

Something I'd have a hard time contesting, at any hour of the day.

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Comments
9 Responses to “Life’s (in a manner of speaking) a Beach”
  1. feebee says:

    AWESOME. My kids wear swimsuits in an optimistic fashion.

  2. emma says:

    Days with nothing to report are great days! Too often parents feel pressure to be doing “more” every single day, when just being able to hang around the house doing – not much at all – is sometimes just what we need (and I’m sure this is what most other families are doing too).
    Sounds like Charlie had a good time playing in the tub! I love seeing Dimitri make a plan and follow it, can imagine how you felt:-)

  3. Niksmom says:

    Sounds like a pretty great day to me! I love that Charlie told you to leave whie he was enjoying his “beach” time. Priceless.

  4. farmwifetwo says:

    It’s not abhorent or horrible to have an autistic adult that will not abuse you… but that is not always the case – Skye Walker and he isn’t nor will he be the only one. There’s a reason many are put into group homes even as teenagers.
    But http://autismgadfly.blogspot.com/2009/12/james-delorey-disputes-neurodiversitys.html when you read the stories – comment section – of autistic adults and being in homes…. is it truly that wonderful?? Do they truly deserve to be at the mercy of the system. Should anything happen to you and your husband… then what happens to them??
    I cannot, nor will I be, 80yrs old with a 50yr old autistic adult in my home. I dread the fact I’m going to have to find a placement for him… I dread wondering what will happen to him in that placement.. I have a really good imagination and can come up with the absolute worst things… even if they aren’t true, but they could be.
    It is a burden to raise them. A time consuming, life altering, financial one, to claim otherwise is lying.
    Do I wish for other children – no. Do I regret having children – no. Do I hate the dx – no. Do I blame them for the crap with the school – no. Am I upset by the time consuming, financial burden – no.
    But do I think it’s “ok” for them to be disabled and at the mercy of others… Do I think it’s “ok” for others to claim they know more about their needs than I do just b/c they have a HFA/Aspie dx and speak for mine who they’ve never met – no.
    I’m a realist and the reality isn’t pretty for them in the long term… but I can and will do my very best for him and sneak a few more kisses before he’s too big for me to reach his cheek.

  5. farmwifetwo says:

    It’s not abhorent or horrible to have an autistic adult that will not abuse you… but that is not always the case – Skye Walker and he isn’t nor will he be the only one. There’s a reason many are put into group homes even as teenagers.
    But http://autismgadfly.blogspot.com/2009/12/james-delorey-disputes-neurodiversitys.html when you read the stories – comment section – of autistic adults and being in homes…. is it truly that wonderful?? Do they truly deserve to be at the mercy of the system. Should anything happen to you and your husband… then what happens to them??
    I cannot, nor will I be, 80yrs old with a 50yr old autistic adult in my home. I dread the fact I’m going to have to find a placement for him… I dread wondering what will happen to him in that placement.. I have a really good imagination and can come up with the absolute worst things… even if they aren’t true, but they could be.
    It is a burden to raise them. A time consuming, life altering, financial one, to claim otherwise is lying.
    Do I wish for other children – no. Do I regret having children – no. Do I hate the dx – no. Do I blame them for the crap with the school – no. Am I upset by the time consuming, financial burden – no.
    But do I think it’s “ok” for them to be disabled and at the mercy of others… Do I think it’s “ok” for others to claim they know more about their needs than I do just b/c they have a HFA/Aspie dx and speak for mine who they’ve never met – no.
    I’m a realist and the reality isn’t pretty for them in the long term… but I can and will do my very best for him and sneak a few more kisses before he’s too big for me to reach his cheek.

  6. Rose says:

    What an imagination. Oh, to see what he sees for just a few moments!

  7. karen d says:

    I can’t stand how cute it is that he was playing “beach” in the bathtub! I know he’s several inches taller than me, but I still think he is So Cute. 🙂
    BTW, Pete has been known to have his worst sensory melt-downs when youtube isn’t functioning properly. It makes the poor guy so completely distressed, too.

  8. autismvox says:

    Charlie’s gotten to be too much of of a “guy” to let me do more than give him a pat and a tap. He likes to ask me to carry him—yes, it’s a joke!
    I give him a kiss every night when he’s sleeping.
    For us, I have to rely on/hope that my extended family can support Charlie. I think of this everyday. Sometimes I start to think about why didn’t we have another child (as if the only reason to have another chid would be to take care of Charlie); what are we doing out here on the east coast when my family is on the west coast. I think of what I’d like the situation to be for Charlie when he’s older and try to start moving things in that direction, to the extent that I can.
    For me, it’s just not going to help Charlie to think that he’s thought of as a “burden,” as “problem.” He got that kind of attitude in his former school placement and enough is enough.

  9. Mothersvox says:

    So lovely to recreate the beach, lovely, lovely young man.

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