Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Perspective

with 19 comments

I am trying to prepare for a huge move with my spectrummy kid.  I’m trying to find a school on another continent which will:

  1. accept her.
  2. accept her when we arrive and not 6 – 18 (!) months later.
  3. have adequate support for her needs.
  4. have classmates who will be able to verbally communicate with her.
  5. not be too far from our home to commute (even though we don’t know where that is, or where anything else is in relation to the school).
  6. have teachers and therapists who are aware and knowledgeable about autism spectrum disorders.
  7. offer an adequately challenging and developmentally appropriate curriculum.

It is not proving easy.  When you add in regular day-to-day running of the house, managing therapy appointments, illness, dog bites, and evaluations for your nearlytypical (yes, that is what I’m calling it) son, it gets a bit tricky.  And then…Wednesday, snow day.  Thursday, snow day.  Friday, snow day.  I have sensory-seeking Pudding who is desperate to get outside in the snow and ice, and defensive Cubby who screams if it touches his skin.  And me.  Ragged, worn out, had enough, can’t take any more, me.

By Friday afternoon, even my indoorsy self was cabin feverish.  I learned that both Monday and Tuesday were student holidays from school too, with more snow due on Tuesday night.  I believe it is called a Godsmack over here.  I hatched a plan.  I would take the kids to the small indoor play/party venue close to our home.  Pudding used to go to a music and movement class there when we were living here temporarily, pre-diagnosis.  Though she hasn’t been there for over a year, she was excited by the suggestion.  We bundled up, and though I struggled to find parking, we eventually got there.  Turns out, the reason for no parking was that every family in the vicinity had the same idea.  It was packed, hot, and claustrophobic.

Pudding had already begun to remove her boots, gloves, hat and coat, so I helped Cubby to do the same thing.  Cubby was ready to play.  Initially Pudding ran in the enclosed area too, then she froze.  It was as though it suddenly hit her: the bright lights, noisy kids, crying babies, spinning fans, heat, people.  She turned to me with a look of anguish on her face and screamed.  I picked her up and moved to a corner and dropped to the ground.  She cried and screamed.  Her breathing came too fast.  She alternately clung to me and tried to run away.  I held on tight, stroked her hair, and repeated my mantra: Mummy’s here, Mummy’s here.  She was unable to speak to tell me what was wrong, but I’d already figured out that everything was wrong, all at once.

I sat there on the floor as kids ran around us, wondering what to do next.  Cubby was gone, climbing on some apparatus at the other side of the room.  If I suggested we leave, he’d have this same reaction.  And she was so worked up, how would I ever get her dressed warmly enough to go back out into the snow?  She stopped screaming, but the sobbing continued.  My so-tall girl, as big as some kids twice her age, and I still comforted her like I did when she was first born.  Mummy’s here.  Mummy doesn’t have a clue what to do, but Mummy’s here.  Little has changed in four years, except her size.

Then I had the thought.  The least useful thought that could possibly enter my head at that juncture.  What do people think? I know, I know.  But it was in my head.  The thought that makes me tilt my chin down and look to the ground, lest I see what people think.  But not on Friday.  Not after this week, not after this day.  I raised my head, and looked around.  Some people were looking, most people weren’t.  Some kids staring, some mothers gazing.  I looked right back at every one of them.  Then one woman smiled at me.  I smiled back.  She looked over at Cubby and nodded to me.  Kind nonverbal code for don’t worry about the other kid, I’ve got your back.

I carried on my comforting litany: Mummy’s here, Mummy’s here.  I really am here, I thought.  We’re in it together kid.  Her sobs quieted, and her breathing slowed, her body loosened and relaxed.  Our foreheads touching so I didn’t know which one of us was sweating, couldn’t tell if they were her tears or mine.  She got her words back:  “I want to sit up there,” looking up at the wall that surrounded the play area.  I lifted her up, and she surveyed the scene from up high.  She took in every inch of the room, floor to ceiling, side to side.  From this perspective, she assessed that the place wasn’t a threat.  From ground level she was overwhelmed by the perceived danger.  After a few minutes, she got down and tentatively joined her brother.  We stayed until she’d had enough.

I’m trying to remind myself that I too need to get a little perspective.  It is easy to feel overwhelmed at times with so much chaos going on.  So many things out of my control.  I might just need to sit this out for a little while until I’m ready to get back into play.  If she can do it, so can I.

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Written by Spectrummy Mummy

February 1, 2011 at 6:39 am

19 Responses

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  1. that just took my breath away. you are such an amazing mom, doing so much for your kids. I’m in awe.
    I’m also in awe of Pudding – the ability to verbalize where she wanted to be because she knew what she needed. Totally.Awesome. just like you.

    akbutler

    February 1, 2011 at 6:53 am

    • If I’m awesome then you have to admit you are too- the blue bird said how alike we are! The scariest part for me is when she loses her words, the most exhilarating when she finds them again. I’ll never take for granted that she is able to express what she needs, most of the time.

      Spectrummy Mummy

      February 1, 2011 at 2:21 pm

  2. So much is going on for you! It’s hard to keep everything under control at times like these–but it sounds like you are doing a great job! Good for you, keeping your head up and not letting the pressure of being in public during an emotional storm get the best of you. It’s hard not to feel the stares of other parents, but always remember that there are many, many of us who see each other and understand.

    therocchronicles

    February 1, 2011 at 9:49 am

    • It is a lot, too much for right now, in fact. A week off worrying about the move won’t make much difference anyway. Thanks for being one of those who sees and understands.

      Spectrummy Mummy

      February 1, 2011 at 2:19 pm

  3. You are incredible. My kids aren’t on the spectrum but every kid has times when they flat out lose it. You deal with it on such a larger scale. I can’t even imagine all you do. You are amazing. I hope I am the mom who is paying enough attention and caring enough to “have someone’s back” in a situation like this. What a great lady. Your blog has taught me so much and you can bet money that I am going to try harder to judge less and care/help more.

    Becky

    February 1, 2011 at 12:14 pm

    • I think “judge less / care more” should be made into a bumper sticker! Thanks for your comment, Becky. The truth is that I have it a lot easier than other mothers. We all have our moments though, it is nice to know there are people out there who have our backs.

      Spectrummy Mummy

      February 1, 2011 at 2:18 pm

  4. Loved your post! Know that others who “get it” are always hear to listen!

    Kathleen

    February 1, 2011 at 2:45 pm

  5. I have to tell you, your post is like a day in my life. Good for you for being such a good mom! Every once in a while it’s nice to take a step back and realize what’s important–you and your daughter.

    Lizbeth

    February 1, 2011 at 2:57 pm

    • Sorry to hear it. We’re very fortunate that we don’t have these overloads too often. I feel for mothers who have to see this more often, every day must be particularly draining. 😦

      Spectrummy Mummy

      February 1, 2011 at 8:11 pm

  6. I am in awe at your patience in dealing with your daughter. I know it can be hard to deal with loss of communication skills, for both the spectrum person losing speech (I’m an adult on the spectrum) and the person trying to communicate with them. It is amazing how you kept calm, at least on the outside, when Pudding was unable to express herself. Also good for her for eventually being able to tell you what was wrong.

    Astrid

    February 1, 2011 at 7:20 pm

    • Hi Astrid. If nothing else, my girl teaches me patience. I can’t claim to always be so calm, but when she is so upset, it is impossible for me to do anything but calm her down. I love it when her words come back- that is when I know she is feeling calmer. Do you experience the same thing when overloaded? (Or did you as a child)?

      Spectrummy Mummy

      February 1, 2011 at 8:14 pm

  7. You made me cry, but it seems you and Alysia have that ability, and between the both of you, I simply don’t stand a chance. You made me cry, because I tilt my head down to avoid seeing the faces of others. Your description of Pudding’s reaction is just the way Perky reacts anything that overwhelms/frustrates. He used to do that level several times a day. Now, it is maybe once a day, sometimes just several times a week. It is that hard – how you describe, the ‘being right there’ for your child ever.single.time. People who ask/comment ‘I don’t know how you do it’ usually get my response ‘you simply don’t know how deep, healing and powerful a mother’s love for her child is’. I will go there for him, every time, just like you do for Pudding.
    You are so awesome.
    I love ‘nearlytypical’, too.

    DQ

    February 1, 2011 at 11:00 pm

  8. Well…..you just explained a day in MY life too! LOL

    I I think Pudding is what she is (amazing) because of the wonderful parenting job that you are both doing..

    Gorgeous photo too btw 🙂

    fiona2107

    February 2, 2011 at 7:52 pm

  9. I am so impressed that Pudding was able to know what would help and that you knew her well enough to listen. You took what looked like a disaster and transformed it into a victory you can both remember. Those moments when the whole thing turns around still take my breath away.

    Diane

    February 3, 2011 at 2:16 pm

  10. […] I’m giving myself that week off.  I have a week to spare.  My panic once again put into perspective.  I’m going to rest and recuperate and enjoy the gift of security for as long as we have it, […]

  11. […] restaurants and the mall. She adores playgrounds and museums. Anywhere novel is exciting.  Though sensory overload can happen, it is mercifully rare. We’ve never had to use visual schedules with her, and I […]

  12. […] A burgeoning sibling relationship, the ability to work out what she needs even when her system is threatened, the capacity to make friends, flexibility in the face of disappointment.  So much more than […]

  13. […] In February there was even more tea, but this time it was going cold.  Pudding began playing Jedi mind tricks on us, and I mused about how it might be to see things through her eyes.  I got a little more political than I intended.  I learned from Pudding that I too needed a little perspective. […]


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