Keeping Calm, Carrying On

Charlie for a box of brownie mix at the grocery store (the store was out of it) I'm sure you've probably heard the adage Keep Calm and Carry On (mayhap you even have it displayed on your wall). It's become a bit of an unspoken mantra around here, as part of our little effort to keep up the peaceful-easy-feelingness in general and in particular on a Saturday when:

(1) Less than 48 hours and the big Back to School Yay! Day approaches: Will we make it without too much ruckus in the ranks? 

(2) We look at Charlie's mouth on Saturday morning and see a large amount of swelling. Jim and I try to discuss this in hushed tones so Charlie doesn't realize (although I can almost guarantee that he does) that his physical state is, once again, the subject of parental angst. During the discussion, we're in the car, as we need to pick up a form from the doctors' office; the form is from Charlie's school, and his physician needs to fill it out so he can participate in a special Adapted Physical Education program to teach him to use the equipment in the fitness room. Due to recent events, I'm thinking that Charlie has some feelings about being at the doctors', so it seems best that we all go. Indeed, the waiting room is full of little kids and Charlie-size parents so it's just as well Charlie waits in the car with Jim.

Being at the doctors' office, we have health concerns on our minds big-time. When we get back home, we've concluded that a return trip to the ER is inevitable as there is definitely a blister, all swollen up, on Charlie's lower lip. We debate and discuss, should we go immediately? it's not discolored, Charlie has no fever, he's still wanting to eat, yes? will he wait as patiently as he did last week? 

Charlie himself has been in a sparkly mood all morning. He did (right after getting up) knock the plastic dishrack of the kitchen counter but that was it. After a bit, he put it back as directed and then ran out for a brisk walk-run with Jim; they both got very cold, but Charlie's good spirits were in place for the day. Jim had been invited to a good friend's 50th birthday party and decided to go to part of it, and to keep his cell phone (of course!) on. Charlie and I got some groceries, drove around, ate lunch, searched around YouTube (you know, all the things one does to make for a super-exciting Saturday afternoon). Then Charlie told me he was finished watching and went to do the aforementioned computer/DVD ritual/script. Hewasn't too happy when I interrupted him by showing him the portable DVD player but he was most definitely grinning after I turned on an old Sesame Street DVD.

I then exited stage "bye Mom" and went to work on a few lines of Seneca (meaning, I pulled up the Latin text and stared at the screen). On hearing stomps and steps, I ventured to Charlie's room where I found him lying in bed wrapped in his big fleece blanket. I also found (despite what it's going to sound like!, reason for relief considering the health saga of this whole vacation) bloody marks on the bed. The sore on Charlie's mouth must have finally burst. 

I'm inclined to think that he'd put himself to bed because (quite frankly) he wasn't feeling well. Needless to say, Charlie must have felt a ton better after that. Smiliness persisted. Jim came home and we went to check out some sites in Hudson County after which Jim and Charlie went on yet another walk, only this one (with the wind howling away) was more like taking in the tundra. Charlie took off his parka and shoes and went to get a container of rainbow sprinkles, the little round kind.

Which leads to me to refer again to needing to Keep Calm and Carry On when

(3) You think you have discovered an alternate punishment for the Danaids in Hades in the form of picking up a good many of said rainbow sprinkles without the modern convenience of a vacuum cleaner, as your child (who has had such a lovely day, mouth trouble be d****d) is extremely sound sensitive and especially to the roar of the Eureka. 

(And don't even mention that you are doing this while your child—who is kindly obliging you by pulling his feet up onto the couch, the better so you can wipe the sprinkle-laden floorboards—is using your laptop, which is to say, you are trying to keep sprinkles from getting into the keyboard.)

Hoping that we can all, yes, keep calm and carry on this new year!

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Comments
20 Responses to “Keeping Calm, Carrying On”
  1. Linda Sullivan says:

    As parents we become calmer, taking things in stride. Calm is healing. Good for you.
    Dr. Mom

  2. Jill says:

    Cleaning up sprinkles without a Dyson or similar device? Fuggedaboudit. If pressed, you can get some wide adhesive tape, the kind used to wrap packages, roll it around your hand, sticky side out, and pick up the sprinkles that way.

  3. Jill says:

    Cleaning up sprinkles without a Dyson or similar device? Fuggedaboudit. If pressed, you can get some wide adhesive tape, the kind used to wrap packages, roll it around your hand, sticky side out, and pick up the sprinkles that way.

  4. Jen says:

    Has Charlie ever used the vacuum? I start recently to teach a noise sensitive kid to vacuum. He covers his ears for the ketchup bottle, and does cover his ears when he first turns on the vacuum. Once he has it on and gets started with it, I don’t think you could ever see a person happier to be running a vacuum. I started out thinking this might be one of my less intelligent ideas, but it’s actually working out quite nicely. Now if he just didn’t steer it like a drunk, we’d be all set.

  5. autismvox says:

    He has used a vacuum a few times but not since he’s become so sound-sensitive. I’ve been more “gun shy” than I might be to have him try the vacuum as the sound sensitivity has sometimes led to behaviors. But maybe it’s all the better time to try it again.
    tape, I didn’t even think of that……

  6. bob's daughter says:

    Been reading your posts for the past 6 months or so. An autistic man (50 years old) lives next door to us. His parents recently became unable to care for him. All they did to keep him home and integrate him is now for naught as he is unable to make his way without them. He has 4 adult siblings nearby who are hostage to his moods, idiosyncracies, and tantrums. He has had several live in caregivers come and go. I believe a residential placement would have served him much better in the long run. Was wondering if you ever considered that for Charlie? It seems like your lives are so difficult–going to the doctor, tiptoeing around his moods, in and out of your house to placate him. You are both two intelligent people with a lot to contribute. How long can you keep this up? I think you are terrific parents. I wonder when it’s OK to let the professionals take over at least a little so you can reconnect with each other and have some semblance of a regular life. From a concerned reader.

  7. autismvox says:

    @bob’s daughter,
    thanks very much for reading and for your concern. At some point—when he’s an adult—Charlie will be living (it’s hoped) in some sort of group home; he can’t lived with us forever. The whole issue of a “temporary residential placement” was brought up in October 2008 inappropriately by Charlie’s former teacher during a home visit. We were very shocked at her suggesting this as I some alluded to here:
    http://autism.typepad.com/autism/2010/01/farewell-2009-and-hello-to-mmx.html
    While things are (as you’ve noted from reading here—again, thank you!) often difficult, it is always better (to us, as his parents) that Charlie live with us, certainly while he still a child (and a child with developmental delays and limited communication abilities).

  8. Alanna says:

    bob’s daughter – I have to say it seems unlikely to me that a next-door neighbor could accurately evaluate whether a residential placement would be a better choice for a family member.

  9. Alanna says:

    bob’s daughter – I have to say it seems unlikely to me that a next-door neighbor could accurately evaluate whether a residential placement would be a better choice for a family member.

  10. Rose says:

    It used to be I could never vacuum or mow around Ben. I don’t know how or why he lost the sound sensitivity.
    Many things you say about Charlie are exactly as Ben used to be, but either he has made adaptions, gotten used to it, or lost it’s intensity somehow. I’m sure there are many manifestations of autism that are still similar between them.
    It’s interesting…

  11. silimom says:

    Kristina, as always I love reading your blog. I haven’t commented much this past year as I was on “autism overload” for a while and felt I needed a break.
    Keep calm and carry on certainly is the motto in our home. I was all set today to take down the Christmas ornaments and decorations, but our 4 year old has other ideas which she is voicing rather stridently. She loves Christmas and develops a routine around it very quickly.
    So, rather than fight that battle I decided to wait until tomorrow morning when she’s back in school. She will certainly be distressed when she comes home but I find she gets over it more quickly when change isn’t happening right in her face.
    So it’s been nice to come here and catch up on all I’ve missed. I’m glad Jim’s book has done so well and that you’re planning on heading back to Greece this March. Good for you! Have a blast!

  12. Niksmom says:

    @bob’s daughter wrote ” I wonder when it’s OK to let the professionals take over at least a little so you can reconnect with each other and have some semblance of a regular life.” I think tht captures the essence of why it is so difficult for someone NOT walking in (y)our shoes to understand the choices we make. Who is to say what constitutes a “regular life” anyway?
    I don’t say that to bash @bob’s daughter; I think she is genuinely concerned based upon the one scenario she has witnessed with her neighbor. But, as we know, not all autistics behave the same way or have the same triggers or needs.
    @bob’s daughter, another wonderful blog about a family who’s eldest son (19 yrs old) is living in a group home, is written by Susan Senator. You can find it here: http://susansenator.com/blog/
    The decision to place your child— no matter how young or old— in the care of another is not one to be taken lightly and can be emotionally devastating. I imagine your neighbor’s family did the best they could in light of the TERRIBLE options available to them when their son was younger. You said he’s 50; at the time he would have been put in the care of “professionals” it would have constituted, basically, committing him to a lifetime of being drugged and restrained. I don’t know if you have children but try to imagine CHOOSING that life for your loved one. It’s not always as black and white as outsiders want to think it should be.

  13. Regina says:

    @Niksmom,
    I was thinking similar; but you stated it better and more eloquently than I would have.

  14. Regina says:

    @Niksmom,
    I was thinking similar; but you stated it better and more eloquently than I would have.

  15. autismvox says:

    @silimom, Really great to hear form you!
    We have never put up a tree as we always (till this year) have gone to California—Charlie hasn’t seemed too aware of the one my parents have. Hope your daughter does ok when she sees the tree is not there…..Thank you about Jim’s book and I will most likely be blogging from Greece—last year when I went I wasn’t blogging on a personal site. Maybe I’ll have Jim take over for some posts….
    @Niksmom & Regina—thanks and just thanks for everything.

  16. autismvox says:

    @silimom, Really great to hear form you!
    We have never put up a tree as we always (till this year) have gone to California—Charlie hasn’t seemed too aware of the one my parents have. Hope your daughter does ok when she sees the tree is not there…..Thank you about Jim’s book and I will most likely be blogging from Greece—last year when I went I wasn’t blogging on a personal site. Maybe I’ll have Jim take over for some posts….
    @Niksmom & Regina—thanks and just thanks for everything.

  17. bob's daughter says:

    I’m sorry that I may have been misunderstood. My neighbor’s parents did a fantastic job many years ago making sure he had access to everything our town had to offer. They really paved the way for kids in our town who came after Chuckie to be included in school, community events, and, later on, jobs. He has 4 grown siblings who can’t pick up where his parents left off. He has had mulitple caregivers who come and go as they cannot give him what his parents did. To put him in a group home now would not be good for him. As difficult as the group home decision may be, in the end, parents can never be sure their wishes for their special child will be carried out. By the way, I am Chuckie’s cousin, so I have a little more than a nosy neighbor interest.

  18. autismvox says:

    @bob’s daughter,
    thank you for writing again—my husband and I do really hope that Charlie can be in some sort of group home or other housing situation in his 20s. We’re too aware that we won’t be around forever and as Charlie has no siblings, the need to address this feels all the more pressing.
    and as a small aside, Charlie is sometimes called “Chuckie” and “Chuck” by us, in deep affection.
    thank you again and very best wishes to Chuckie and his family.

  19. autismvox says:

    @bob’s daughter,
    thank you for writing again—my husband and I do really hope that Charlie can be in some sort of group home or other housing situation in his 20s. We’re too aware that we won’t be around forever and as Charlie has no siblings, the need to address this feels all the more pressing.
    and as a small aside, Charlie is sometimes called “Chuckie” and “Chuck” by us, in deep affection.
    thank you again and very best wishes to Chuckie and his family.

  20. bob's daughter says:

    Would you believe my son is also named Charles in honor of my relative? It’s a very uncommon name these days and I think he is the only Charles in his high schol class of over 400 students.

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