Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘hope

Shining a Light (at Hopeful Parents)

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This post was originally published at Hopeful Parents.  You can read it there by clicking below:


Hopeful Parents

I’ve been volunteering for Autism South Africa since I visited their offices a few months ago.  Unfortunately, the financial difficulties the organization was experiencing then have become even more pronounced.  There is no government support.  Donations are dwindling.  Existing sources of revenue are drying up.

There is the great dilemma- should you continue to push for awareness in a country where autism is under-diagnosed and misunderstood, knowing that it is already impossible to provide adequate assistance?

The one thing they desperately need- more money- I’m unable to bring.  I couldn’t help but feel helpless.

And yet that morning…

  • In walked a student from the local university looking for further information about autism spectrum disorders.
  • An educator is travelling around the country providing workshops for parents, therapists and teachers.
  • A therapist stopped by and asked to be added to the mailing list for more information about autism workshops.
  • The mother of a newly diagnosed child was able to walk in and collect information about autism in her own language, and given direction about the next steps.
  • Another concerned parent could call in and schedule an appointment for a full assessment free of charge.

The staff continue to work on ways to help everyone affected by autism in South Africa has access to the support and services they need, regardless of the current situation.

Following a phone call in which a father asked, “Is there any hope?” following the recent diagnosis of his child, the member of staff who took the call turned to me and said he wasn’t sure how to respond to that question.  He asked me how I would have replied.

There is always hope.

When there is nothing left to give, hope is the one thing you can give.  We hopeful parents know that.  A cause is never hopeless as long as there are people trying to find it.  I don’t feel helpless any more.  I described my first visit to the office as a flood, but now I know better.  It is a lighthouse.  In these dark times, Autism South Africa is still shining a light.  Now all that remains is to make that beacon brighter.

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Written by Spectrummy Mummy

January 19, 2012 at 2:15 pm

H is for Hope

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Lord save us all from a hope tree that has lost the faculty of putting out blossoms.”

– Mark Twain

I was torn between writing about Hope and Hyperactivity for my H post, but hope won.  Hope always wins.  It beats despair and despondency.  It makes us rethink yesterday, enjoy today, and look forward to tomorrow.

I wasn’t always a hopeful person though.  In fact, the fast majority of my life I was a pessimist.  I don’t know if this is unusual, but I became optimistic and hopeful as a person only after the diagnosis.  A defining moment in my own experience as an autism mother was the day I felt hope return, and once it did, I held on tight and decided I wouldn’t let it go again.  If this was to be our journey, hope was going to be our fuel.

Yet you can’t make hope.  You can’t will yourself to feel hopeful.  At the times you most need it, it is the most elusive.  So what do you do then?

You find a hope tree that is in blossom.  If you’re in the depths of winter, find someone in spring.  It may be your partner, or a relative, or a stranger from the interwebs radiating joy in today and belief in tomorrow.  It may be a young child who doesn’t even know what hope is, but who lives as an eternal spring, with all the bounce included.  Find it, and feast your eyes, inhale the scent, feel the sturdiness of the trunk.

It isn’t a hope based on goals and milestones.  I don’t look ahead to a “cure” or “recovery”- if I did, I think I’d still feel the chill of winter, with my hope always out of reach.  But I can’t live so close to my own hope tree without smelling the fragrance of the blossom, and feeling the sun beating down on us.

Hope really is like blossom, it buds and it flourishes.  No sooner are you enjoying another’s bloom, than you feel it germinating yourself.  Then all you need to do is put out your blossoms for everybody else to see.  I’d love to picture our own forest in bloom.  Every one of us experiencing the magical new beginning of the season.

That is what Hope does for me.  It chases away the drab, and lets me see life in glorious technicolour, like the incredible blossoms of the Jacaranda trees here in South Africa.  Almost dazzling in their brightness, yet real enough to touch.

But if you really don’t feel it growing inside of you, try this quote instead.  You may find that you’re already halfway there.

“Scared and sacred are spelled with the same letters. Awful proceeds from the same root word as awesome. Terrify and terrific. Every negative experience holds the seed of transformation.”

– Alan Cohen

This post is part of my A-Z series.  You can read the rest here.

Written by Spectrummy Mummy

November 28, 2011 at 2:30 pm

The Package

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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

Birthday Boy

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Today is Cubby’s 2nd Birthday.

We can have small conversations, he and I.  Something I never take for granted.  Something I was never sure would happen, even before we saw signs of autism in Pudding.  A couple of weeks ago, it was a balmy 70F and we were at the park, having such a conversation.  I told him that we were having a birthday party soon for him, like we’d had for Daddy.  He remembered birthday cake.  He told me he wanted a train cake.  I told him I’d do it.  He told me he wanted the bouncy castle.   Why not?  Balloons.  No problem.  He told me he wanted pretzels, taquitos, guacamole, fruit and candy.  I agreed.  Your day, your way, little dude.

Then he kept talking about his party, day in, day out.  He’d have two candles on his cake.  His friends S, A & K would be there.  He never wavered in his selections.  He had the vision for his party, I just had to deliver it.  He was just so excited.  The kid who spend too much time in waiting rooms.  Whose needs are sometimes crowded out by his sister’s demands.  The one who has to go with the flow, because the flow almost always has to go whichever direction Pudding determines.  I was going to make it happen.

Of course, he got a cold last week, and of course, he passed it on to me.  But I was still determined to make the party happen just the way he wanted.  Thankfully his grandparents came to help out.  Then, and this is where I began to shake my fist at the sky, it snowed!  Not much, but enough to thwart outdoor activities.  But I had promised my boy that bouncy castle, so we brought it inside.  I’d promised my boy all those foods, and I found or made egg, milk, and wheat free versions of them all.  He had the best birthday of his short life.  All his friends came, and were thrilled to bounce, and feast on Cubby’s favourite things.  He got the most amazing presents from our very generous friends.  Our house is now stuffed with cars, trucks, trains and superhero toys.  He didn’t want the party to end.  He fought going to sleep for as long as he possibly could, trying not to let the day end.

Through all of this, his sister did wonderfully.  There was a slight confusion about who gets to open presents, but she managed to back off before it got ugly.  With being ill, I hadn’t had chance to make her a social story, which makes the fact that she held it together so well even more impressive.  For once all the attention was on him, and she did nothing to interfere with that.  I’m calling that her gift to him.  It was the day of his dreams, he deserves no less.

The very strange thing, is that this was all supposed to be very different.  When I was pregnant with Cubby, his ultrasounds revealed abnormalities.  We prepared ourselves that he would be our special needs child, little knowing that we already had one in Pudding.  Two years ago in Luxembourg, our little guy came into our world.  We expected the worst, and hoped for the best, something that I don’t seem to have stopped doing ever since.  Yesterday was another one of those days tipped towards hope.  Thinking about the rush of love I felt when I finally held my little fighter, I can’t help but expect there will be many more just like it.

Happy Birthday, my sweet boy, you exceed my expectations every day.

Needless to say, the train cake isn't sugar-free!

Cubby, Pudding and friends on the indoor bouncy castle.

Written by Spectrummy Mummy

March 28, 2011 at 7:27 am

Posted in Sibling

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