Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

The Package

with 17 comments

The Package of forms from the hospital is just as heavy as last time.  Its bulk doesn’t comfort me, though they are blank, I’m scared to complete them.  I quickly hide them in a drawer.  It loiters in the drawer, unopened, for three months.  I know it is there, but I will myself to ignore it.  Finally, one week before the appointment, I have to open it, can put it off no longer.  Lucky that I did, there are forms for her teacher to complete, and there is only one day remaining before Spring Break.  I quickly tuck the rest of them away.

We’ve completed these same forms before.  That time there was a sense of urgency.  In my desperation to understand, I pushed away the overwhelming thought of what my answers would mean, and just responded to the questions posed about my girl’s development.  Just questions, they don’t define her.  Then those forms were evaluated, and more evaluations took place, and a label came which still doesn’t define her, but altered the course of our lives nonetheless.  That label brought answers, and understanding.  It brought recommendations for therapies that we just couldn’t afford.

It also gave us a new starting point.  A ground zero from which to chart her progress.  And this is the part that scares me.   The first time around, we compared her development with her peers, now we compare her to her younger self.  Yes, there has been progress, but has there been 20 months of progress?  In our game of snakes and ladders, are we moving forward?  I can’t help but reflect that had we been able to follow their guidance, there would have been much more of that elusive progress.  The feeling as familiar as the package of forms: Guilt.

Guilt is debilitating.  It leaves me prone.  I must fight it, because she needs me to keep moving forward so that she can too.  We do the best that we can, with what we have.  That maxim motivates me.   My armor.  I size up my enemy again: Guilt.  Nothing compared to the opponents my girl faces every day.  The best that I can do right now, is simply to fill out a few forms.  It isn’t easy for me, but like my girl, I try my best.  Time to open that drawer.

I did open that drawer on Tuesday.  There was no filling out the forms though.  Every time my attention was elsewhere, a pair of supervillains intent on destroying the house, my patience, each other, the world took over.  Eventually when peace was restored with bedtime, I opened up the envelope again, and got to work.  I don’t remember what answers I gave the first time around, but I suspect many things remain the same.

But there are so many things those forms don’t measure.  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 I’d have hoped for the last time.  I just need to remember that for today.  I’ve been trying since the early hours of the morning.  I have the same worry and guilt as ever, but now mixed with pride and hope.  The heady cocktail of a Spectrummy Mummy doing the best I can, with everything I have.  Just like any other day.

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Written by Spectrummy Mummy

April 21, 2011 at 5:38 am

17 Responses

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  1. You are stronger than you know. We are all here cheering you on xxx

    Fi -From the Madhouse-

    April 21, 2011 at 5:46 am

  2. You are not alone…… small consolation, but very true!

    joeysmommy

    April 21, 2011 at 7:56 am

  3. Sometimes when I am feeling that the task of being who I have to be everyday is larger than who I really am, I go outside of myself and pretend to be spiritual (though I am desperately not) by repeating to myself those words so many have showered upon me, and that most days irk me to be honest. “God gives you only what you can handle.” For some strange reason, it’s sometimes just enough to keep me going.

    Aimee Velazquez

    April 21, 2011 at 8:09 am

    • Hah, yes, those words have been delivered to me at the wrong times too. We keep on keeping on though. 🙂

      Spectrummy Mummy

      April 21, 2011 at 4:27 pm

  4. My 8 year old was just diagnosed in November 2010. I share a lot of your feelings.

    GB's Mom

    April 21, 2011 at 8:43 am

    • Oh GB’s Mom, ((hugs)). I know how tough the first few months. You’re in good company here, and you’re never, ever alone.

      Spectrummy Mummy

      April 21, 2011 at 4:28 pm

  5. Progress is progress, no matter what the shape or size. And the guilt, put that in a package in your dresser drawer–you are an incredible mom doing an incredible job.

    Lizbeth

    April 21, 2011 at 3:41 pm

  6. you have absolutely no need for guilt without your tenacity and determination to fight for your daughter that initial diagnosis might not have been made for a very very long time and you have already placed her so far ahead of where she might have been and where others less fortunate remain. Your children are very lucky to have such wonderful parents 🙂

    s

    April 21, 2011 at 5:49 pm

  7. I hate those damn forms with a passion that takes my breath away. I have a whole packet I need to fill out for my daughter, but after years of filling them out for my son, who is on the spectrum, I just cannot face it today.

    Patty

    April 21, 2011 at 10:22 pm

  8. The forms make me completely crazy. When you reduce your kid to black and white words on paper they look so dreadful. I always get really depressed after filling out the forms. Hugs to you, my friend.

    Varda (SquashedMom)

    April 21, 2011 at 10:51 pm

  9. […] from the opening, I’m in a much more upbeat mood.  Having got my fears off my chest in yesterday’s post, I proceeded through the appointment with stoic calm.  I tend to handle stressful situations […]

  10. You are doing fantastic. This stuff can drag anyone down – you just don’t want to let it keep you down.

    It’s been a while since I had another bunch of forms to fill out. I wonder how many hours I’ve spent over the years trying to make our lives fit into blanks and boxes and quantifying our achievements. In the next couple weeks I get to start a new brand called “transition paperwork” -referring to transitioning out of high school and into the adult world. Fifteen years in and I’m still finding new areas in which to feel completely clueless and unprepared. The benefit of all those years is being able to look back on all that we’ve faced already and knowing we can face whatever is to come. You’re building that foundation now, and you’re doing a wonderful job.

    Diane

    April 23, 2011 at 3:59 pm

  11. The forms are just pieces of paper. They do not represent Pudding. This part represents Pudding “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.” Do you see how awesome those words are? Those are the real measures. (I hate standardized NT world measures of forms) Our children will grow and flourish more than we can see now – they are still so very, very young. They will be beautiful grown ups one day and you and I will look back on these forms and laugh at how they did not measure what is inside. ((Hugs))

    solodialogue

    April 24, 2011 at 2:51 pm

  12. […] the results and recommendations following Pudding’s reevaluation.  As you may recall, I was worried leading up to the appointments, but managed to reevaluate my own perspective for the actual […]


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