Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘evaluation

My New Mantra

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Today is my 200th post, which I think allows me to call myself a prolific blogger, because I like using big words.

As you might gather 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 pretty well, I’m not a bad person to have around in a crisis, or even after a crisis.  But there is probably nobody worse to be around before a seismic event.  Leading up to that point, I blow things out of proportion, I worry about the worst case scenario, I am doom and gloom.  So a simple appointment at the hospital causes momentary panic, and then I deal.  It may not be the best strategy for dealing with life’s twists and turns, but there you go.  Having called into question my ability to deal with Pudding’s needs, I was calm, rational and prepared by the time we got there.

Pudding woke up with a cold.  I’m not going to use that as an excuse for the results of her testing because:

  1. We did not accompany her for the testing, and  won’t find out for a few weeks how she performed, she could have done really well for all I know.
  2. There is always something.  If not a cold, then a bad night, or she was out-of-sync, or something would mean she wasn’t on top form.  Top form days are awesome, but they are rare.  Let us use this day as our baseline, however it turns out.
  3. The testing is not carried out to send me into a vortex of despair, much as I may have thought that in the wee hours of the morning.  It is to determine which interventions will be the most useful to her at this stage.  The vortex of despair is just an added bonus, for those who like to see me lose my composure.  I must admit, it is quite funny.
  4. It is the best we can do with what we have.  Really, I should have come to that reason first and stuck there.  I might just end my next 200 posts with that sentence.

As we were not, in any way, questioning the validity of her ASD diagnosis, we got to skip a lot of repeat testing, and just concentrate on her current performance.  Her part was over very quickly.  In fact, the psychologist commented on just how difficult it is to keep up with her, so quickly did she move through the tasks.  Yes, you don’t have to tell me that!

We’ll get all the results when we return in May, but as much as they mattered to me when I couldn’t bring myself to complete the forms, I honestly am not concerned now.  At the beginning of the meeting, the psychologist asked why we were there, and instantly I felt relieved.  Oh yes, the panic was for a reason.  I’d almost forgotten we were there for something!

I asked for their expert advice on preparing Pudding for the move to South Africa.  I told them that we’d found a great preschool program that I’m happy with, but asked what else we need to put in place to best facilitate her development.  We answered many questions about her strengths and weaknesses, and the good and bad parts about the services she is currently receiving.  I’m confident that they now have a pretty good idea about our girl and where she is now, and will help us to help her reach her full potential.

I’m optimistic about the move, and assured that we’ll be able to prepare her as best we can.  We do the best we can with what we have.  Today what we have looks like a whole lot more than yesterday.  We have 102 days to get it right, and every day I’m going to repeat my new mantra.  You can join in too.

Written by Spectrummy Mummy

April 22, 2011 at 7:00 am

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.

Written by Spectrummy Mummy

April 21, 2011 at 5:38 am