Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

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Ready or Not (at Hopeful Parents)

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Hopeful Parents

This was originally published at Hopeful Parents.  You can read the post here.

I was out of sight during a game of hide-and-seek, and Cubby couldn’t find me.  Just a few months ago, this entire scenario would have been impossible.  Before we started Early Intervention, I couldn’t leave Cubby.  Ever.  I couldn’t go into another room.  He could only sleep next to me.  I couldn’t use the bathroom alone or take a shower.  His occupational therapist began introducing games of hide-and-seek for the three of us at the local playground, and slowly, slowly, he got better.  He learned to trust her, and eventually learned to trust that I would come back.

Mummy, where are you?  I miss you!

There isn’t a day that goes by when I don’t marvel at this boy’s language skills.  His ease at expressing himself and his emotions, so strikingly different from his older sister.  I let myself exhale a little.  It won’t be so hard for this one.  He can communicate, he can tell someone else what is wrong.  He doesn’t rely on me to decode every situation, every adverse sensory reaction.

He made other kids of progress too under Early Intervention.  He strengthened his muscles, both fine and gross.  He can hold a crayon correctly, he can jump from one place to another.  He learned to tolerate being touched, and ask what was making the noise.

But there were some goals we didn’t achieve before we moved.  He still struggles with waiting and turn-taking.  He is still an anxious little boy whose attention span is very short.  Most of all, though, he is still a child that can’t always play well with others.  He gets too overwhelmed.  He prefers to sit on the sidelines, observing.  For all the great strides he has made, I still worry.  Of course I worry- I’m his mother, and he will always be my baby.

As his mother I can do so much for him.  I can give him a sensory diet, to lessen his need to spin himself in circles.  I can distract him when he repeats things over and over- echoing his sister’s echolalia.  I can explain things, prepare him, help him understand this at times confusing world.  But I can only do so much.  What I can’t do is be a typically developing peer and playmate.

So today he starts preschool.  He is excited.  He is ready, but I’m not.  I’m afraid that this sensitive little soul will become overwhelmed and will withdraw just as Pudding did when she started school.  Recently we’ve spent a lot of time together, just the two of us.  Over a cup or two of rooibos tea, we’ve talked about school, and how Mummy can’t stay, and the teacher and new friends will be there to play, until I collect him before lunch.  Every day he asks to go to school.  He is ready.  I can’t hide from it, not when he is seeking something more.

So I stepped out of my hiding place.

I miss you too!

I gave him a hug, and he giggled.  Ready or not, here we come.

Written by Spectrummy Mummy

September 19, 2011 at 10:52 am

The Fix (at Hopeful Parents)

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This post was originally published at Hopeful Parents.  You can find it by clicking here.

On August 16th 2011, Pudding asked me a why question. She was wearing a Hello Kitty top, blue leggings, and Disney Princess socks. I was drinking tea, attempting to warm up after a cool day in Johannesburg proved it really is winter here after all.

As she bounced into the room and her fingers explored every surface, they found the switch of the lamp. She flicked it on and off, as she has done every day since we arrived, but this time it didn’t turn on, and for the first time ever she asked me why.

Just like that. So naturally and spontaneously that a stranger observing might take it for granted. But not me. Every detail is forever etched into my memory. The pounding of my heart and the giddy, elated feeling.

I can’t tell you the day she first smiled, sat by herself, spoke her first word, stood alone, or even took her first steps. I have the memories, but they are pinned down to weeks, not days. Though I’ve been asked countless times on countless forms documenting her development, I give vague answers. 4 weeks, 5 months, 10 months, 12 months.

Those answers satisfy the professionals, looking to pinpoint when her development went awry.  But they don’t satisfy me.

I have replayed those milestones over and over for the last two years, but I can’t get more specific. The truth is that I didn’t accord them the attention they deserved. I was the stranger observing who took them for granted.

Moments after she asked and I even managed to answer her question, I shared this milestone on Facebook. A friend commented that this would herald an exciting new phase of development- the why question being a “gateway milestone”.

I had to applaud her choice of words. No longer the stranger taking milestones for granted, I am now a developmental junkie. I’m addicted to observing the miracle of development, not just in my own children, but in every child I encounter. I can’t get enough, even when I have to be patient with a small stash. I knew that it was a year ago (and four days) since I’d written that Pudding doesn’t ask why. I knew, because I’ve been waiting for this fix ever since.

When I first held Pudding and Cubby, I remember the sudden burst of love I felt for them. Already I was taking for granted so many things: their health, their strength, even their just begun lives. Never again, for either child. I take nothing for granted, appreciating just how fortunate we are.

Likewise with development. Whether milestones are hit strongly and surely (if a little tardily) in Cubby’s case, or later and sporadically as with Pudding, I marvel at them, and the high that they bring.

At times I think of that stranger who soberly observed the milestones in her children. She never knew the intoxicating feeling that rushes through this addict as I witness the many miraculous milestones of everyday life.

After a few hours of riding this high came the inevitable comedown. Was this just appropriate echolalia? And just how long will it be until I hear the next why? I tried to shake my way out of withdrawal by focusing on how huge that milestone was.

Then yesterday at 8.47 am still wearing her nightgown she brought something to me. It was my GPS that I’d removed from the car for my husband to look at. Driving around unfamiliar streets in a new country, I’d been unnerved as it kept dropping the signal, or turning itself off inexplicably.

“Mummy, why is it not working? Is it broken, Mummy?”

Not broken, it just works in it’s own way, on it’s own time. I’m just going to have to be patient about it. But you, my sweet, you are the fix.


Written by Spectrummy Mummy

August 19, 2011 at 1:30 am

Lapped (at Hopeful Parents)

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This post was originally published here at Hopeful Parents.

July 19th.  A year to the day from when I started blogging.  My 12th Hopeful Parents post.  Two years this week from Pudding seeing a Speech Language Pathologist, and the dawning realization that autism was part of our life.

Time is on my mind lately, with just twelve days left in this country, it is impossible to think of anything else.

I should be in a frantic rush of panic and organizing, but the urgency just isn’t there.  I can’t bring myself to think of time as running out, time is just going round.  I’m constantly hit with déjà-vu, I’ve seen this before.  I’ve done this already.  We were past this point, weren’t we?

Just as we are revisiting and reinforcing the concept of time at home with Pudding, so her teacher does the same at school.  Every day we add the date to her velcro calendar, and every day talk about how many days left.  But it hasn’t sunk in with me, so I can’t believe it has for her either.  Regardless, time ismoving on.

It dawns on me that this isn’t a straight race to the finish line, I’m doing laps.  Two years have brought incredible change, and yet some things appear entirely the same as they were.  But they’re not.  We have changed, learned and grown, even as we see there is much further to go on this course than we realized.

This track is a series of bends from paper cuts and straights with sweet rewards.  There are days when I feel like we’re gaining ground, and other times where I feel like I’m just spinning my wheels.  Yet even on those tough days, I still have my two reasons to be hopeful.

And 12 posts on, a year on, two years in- that is still good enough.  I’m ready to go for another lap on a different course.  Care to come along for the ride?

Written by Spectrummy Mummy

July 19, 2011 at 5:27 am

On Father’s Day (at Hopeful Parents)

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It is the 19th of the month, and it is Father’s Day.  Join me over at Hopeful Parents to celebrate Spectrummy Daddy, and all the other fathers who deserve to be appreciated.

To the man who:

  • wastes his days off on specialist appointments for the kids.  Because he knows I struggle to do it alone.
  • has finger-nose with Pudding (don’t ask) and orca (likewise) with Cubby.  So that each kid has their own special daddy thing.
  • gives up nights out with friends and weekend sports for playgrounds and pools.  And never lets us know that he minds.
  • gets up in the night so that I can get some rest, even though he gets up at 5.30 for work.  Then brings me a cup of tea so that my day starts out well.
  • makes up new wrestling moves to give the kids the sensory input they need.  Then performs those moves on request, over and over, even at the end of a long day.
  • sees how special our kids are, and accepts them as they are.  But will do anything to help them overcome their challenges.
  • offers a cranky wife a supply of hugs, shoulder massages, and feet rubs.  And doesn’t mind when they are demanded.
  • understands and indulges his kids’ special interests.  Because he has them himself.
  • has seen every member of this family at their very worst.  And is still here, will always be here, even if he might have to live apart at some point.
  • gives us the world.  And helps us find our place in it.
  • admits that quoting movie and TV dialogue is a tad spectrummy.  But won’t stop…and has me doing it now too.
  • looks good in blue.  And pink.
  • acknowledges that ironing is man’s work.  And makes sure Pudding and Cubby see him in action.
  • lets Pudding pick who puts her to bed, and accepts that it is never him.  But keeps asking until the day she changes her mind.
  • has become adept at finding hidden allergens in food.  And a whiz at making gluten-free, egg-free, and milk-free weekend breakfasts.
  • tells us he loves us every day.  And we never doubt it.

I couldn’t imagine a better daddy for Pudding and Cubby.  Thank you for all that you do.

Thank you to all the fathers who are here for their children, no matter what.

Thank you to those daddies who can’t be with their kids today.

Thank you to the daddies who have to be oceans apart, wishing they could be there for their children.

Thank you to all the mamas who have to be both parents to their little ones.

Thank you for doing it day in, day out.  You deserve so much more than just one day to be appreciated.

Happy Father’s Day.

Written by Spectrummy Mummy

June 19, 2011 at 7:13 am

Moving On (at Hopeful Parents)

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This post was originally published here at Hopeful Parents.

We are now 75 days from moving.  A very big move.  I’m starting to think about packing, but there is much to do before then.  We have too much stuff to pack, far too many things accumulated over the last almost two years.  Much of it we no longer have a use for, but is good enough to be reused or recycled.  I’ve spent much of this month dividing up our belongings this way, and my house is messier than ever.  I crave the piece of mind that an organized house would bring, but there is never going to be enough time for that.

For now, I’m thinking about what needs to be cleared out, and what I need to keep to take with us.

When we moved in, I had a freshly diagnosed on the autism spectrum 2 year-old, and a baby.  Most of our belongings had been shipped ahead to the Panama Canal, waiting for us in a life that wasn’t meant to be.  Friends came to our rescue with with loaned baby equipment and toddler toys.  We bought things too, unable to wait for our belongings and trying to establish a home, little realizing that finances were about to get so difficult.  Everything seemed justified at the time, each new toy or piece of therapeutic equipment seemed so vital, but really, it was just stuff.  Stuff that has been outgrown, or no longer serves its purpose.

There were other things I brought into the house too.  Things that aren’t bought, but cost us dearly.  Like fear, worry, anger, and guilt.  They carry too much weight.  I’d love to throw them out.  I know nobody else has any use for them either, and I certainly don’t need to take them on to the next phase in our lives.   I’m going to at least try, and say that I’m moving on.  Perhaps it will work.

If only we could jettison that extra baggage.  We’d be able to free up space for the things we need to take with us.

The good stuff.  Things I’ve learned along the way that have proved valuable, invaluable even.  Awareness, insight, and education.  I’d love to pass these items on.  I’d like to be able to hand them over to another family like us who could make good use of them.  Gently used, but still in very good condition.  Things that should never be scrapped.

But there are many more things I also need to pack up to take with us.  I can’t live without hope.  I wouldn’t be able to make the move without being able to laugh at myself.  I wouldn’t go anywhere without the understanding that has been two years in the making, but it still unfinished.

And then the big one: support.  It might come in the form of a friend’s email telling me she understands.  It could come from my husband’s arms after a challenging day.  Almost every day I’m fortunate to get a comment from someone telling me they live it too, propping me up when times are tough, and sharing the thousand little celebrations of this journey.  It can’t fit into a packing case, but it comes with me, and I can’t express how grateful I am for it.

These are the things that life me up so I’m ready to take off.

Whether your adventure takes place in your hometown, or the other side of the globe, I hope you only live it with the things you need.  Let me know if you find a way of clearing out the unwanted things for good.  I don’t want to keep accumulating junk.

I don’t need 75 days, and I don’t need to go anywhere.  I’m ready to move on right now.

Written by Spectrummy Mummy

May 19, 2011 at 7:51 am

Sweet Reward (at Hopeful Parents)

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Hopeful Parents

This post was orginally published at  Hopeful Parents.

Pudding’s reward chart had been working wonders, but there were still some activities which required extra motivation on her part. At the end of the week, she had completed 3 out of her 5 goals. Had we overwhelmed her with too many chores?  Or was this her way of testing to see if she would get the prize anyway?  The reward chart is so new that it is impossible to tell, we’re still in beta testing mode.

We decided that she would have a reward, but not the toy she would have acquired had she carried out all of the tasks every day. Our local ice cream shop has a sorbet that is gluten, dairy, and egg-free that we pass off as ice cream to her.  We knew she’d be happy with that sweet treat, as long as it was pink and had sprinkles on it.  Ice cream always has to be pink with sprinkles.

As Cubby took his nap, I suggested she accompany her Daddy (who is in charge of religion and frozen desserts) to get ice cream. She refused. Perhaps I wasn’t clear that she would get some too, so I let her know that she would, as a reward for her tokens. She declined once again. I explained that it was pink, that there would be sprinkles. Still she declined.

Maybe it was because of her separation anxiety monster. After a long stretch without the beast, it has once again taken hold of our girl. It seems that just as it loosened its clutches on her brother to enable him to sleep through the night, the monster returned to attacking her. Now she can’t sleep without me by her side. She flinches if I reach for my coat or shoes, and requires constant reassurance that I’m not going anywhere without her.

I suggested that Daddy could stay home and she could go with me. She rejected this idea too. By now she was upset, frustrated that we couldn’t understand what she was trying to communicate. Could it be that she no longer liked ice cream? I found it hard to believe, so I checked with her. Yes! She likes ice cream and yes, she wanted to go for some! Okay. Spectrummy Daddy and I were at a loss. Finally she let us in on the source of her sorrow.

“Cubby wants to get ice cream.”

Oh.

Her brother.

She was thinking about her brother.

She was thinking about her brother!

My girl who has for so long lived in her own world, and refused to let her brother be a part of it, was upset that we weren’t including him on this treat. All the times I had tried, and failed, to get her to allow him to be part of her life.  Before he was rejected and ignored, now she wanted to share her enjoyment with him.  She was upset that he wasn’t included.  Here was my reward, and there is nothing sweeter.

We waited until he woke up, then the four of us went to get ice cream. We asked for two spoons for the strawberry sorbet, but it quickly became clear that she wasn’t prepared to let Cubby have any. A second serving was swiftly ordered for her brother, before the magic of the moment was lost.

Sharing each other’s world is enough to ask, they don’t need to share ice cream too.

Written by Spectrummy Mummy

April 19, 2011 at 7:06 am

Paper Cuts (at Hopeful Parents)

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This essay was originally posted at Hopeful Parents.


Hopeful Parents

Some say the child’s diagnosis is like a stab to the parent’s heart.  A shock, a blow that stops the heart from pumping, the world from turning, life from living.

I’m not sure it was entirely like that for me.  If it was, the wound wasn’t mortal.  Rather it was closer to the cut of a surgeon’s knife.  I anticipated the diagnosis, and knew it was necessary, prepared for it.  It was the recovery that took a long time.

I’d wanted to stop the bleeding quickly, put a Band-Aid on it, and heal.  But you can’t rush grief, it takes its own time.  I needed the stitches that came with experience.  I needed the tender care of those who had gone before me, applying balm to the wound.  First I felt numb, then I was sore, but it got better every day.

I healed up.  I dutifully worked through all the stages.  I wasn’t in Denial for long, though you could say I’d been in denial all along.  I was Angry for quite some time.  I Bargained better than the canniest of salesmen.  There was the Depression.  Short-lived, but miserable depression, anemia from the blood loss.  And then Acceptance.  Text book.  Glorious, wonderful, acceptance.  All the while I’d known that our baby was no different, no diagnosis would change my feelings.  But I’d changed, my life was changed irrevocably.  I’d formed a scar.  That needed Acceptance.

Only the thing they never tell you about grief, is that it comes around again.  Not so bad.  Not bleeding so profusely.  More like little paper cuts.

The sting reminds you of the bigger pain, as though you were ever likely to forget. I’m cut when my daughter refuses to hug her father, and only my cuddles will do.  I smarted when she spurned my parent’s attentions when they came to visit.  The nick when my younger child surpasses her development, or an overseas school refuses to include her.

Just little griefs; they sting, but they aren’t fatal.  Paper cuts.

I can dress my own wounds, and even when I can’t, they heal up on their own.  Give her time, she’ll get there.  Bandage.  She has come so far.  Ointment.  She is amazing in her own way.  Balm.  The paper that cuts me is a masterpiece still being written.  Salve.

Acceptance isn’t just getting through Grief.  It is learning that I’ll go through many griefs, and just as many acceptances.  No use in denying it.  Acknowledging that I’ll smart through every one of those paper cuts.  It is okay to be angry about it.  I can even try to bargain that one day my skin will be thicker, eventually dulled to the pain.  I can get depressed about it, but sooner or later I’ll accept that they will come as part of parenting.

Love hurts.  Sometimes a lot, more often a little.  If I can recover from a stab wound, I can get through these too.  Love heals too.

After all, nobody ever bled to death from a paper cut.

Written by Spectrummy Mummy

March 19, 2011 at 6:21 am