Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘regression

Honeymoon

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Though it pains me to write it, the honeymoon is over.

Yesterday Pudding had her first day of evaluation at an early intervention/ school for children with autism.  To say she didn’t want to go is putting it mildly.  Her big eyes filled up with tears as she begged to stay at home with me.  It was hard to ignore, particularly as I’ve seen such growth in her by staying home with me.  Like a new bride, I was focusing only on the good, and turning a blind eye to anything that interfered with what I wanted to see.  I’d been awake since 4 am, dreading the end of our sheltered time away from the outside world.

When it came time to drop her off, she was clinging to me, alternately screaming and pleading to go home with me.  I felt a weight in my chest as I struggled not to cry myself.  In the short term, the easiest thing would have been to carry her out of there like I was Richard Gere in “An Officer and a Gentleman.”  But life is not like Hollywood, and a child with autism needs therapies.  I can’t give her everything she needs, though I wish every day that I could.  Nope, this isn’t the movies, although Pudding would have looked very cute in the sailor hat.

I collected her, and she rushed to get her backpack and then led me away impatiently as I tried to get a feel from the therapists about how her day had gone.  At home, she was a bundle of anxiety and hyperactivity.  We saw a return of old behaviours that I felt were left behind- mouthing inedible objects, picking at her skin, and climbing on the furniture.  Although I caught her in the act with the latter, right before dinner time she climbed again, and a nasty fall left a gash and bump on her forehead.

Once upon a time Pudding was quite oblivious to pain, and she still recovers well from little bumps and scratches, but this one was bad.  She was crying in pain, her little heart was racing and everything was just too much.  I cleaned her up and dressed the wound.  After a few cuddles, she was ready to venture downstairs for dinner (with the understanding that there would be a cupcake for dessert).

No sooner had we made it downstairs, than she started screaming and ran upstairs.  When she finally managed to speak, we learned that her distress was brought about by the arrival of a new vacuum cleaner for the house.  I was incredulous.  We’ve dealt with her fear of hoovers.  I’ve been able to vaccuum with her in the same room for a long time.  This was still new in the packaging- it had never been switched on.  We were hurtling down a backwards slope.

I hid the offending item, and after much reassurance that it was gone from the house and would never be used in her presence, she eventually came back downstairs and we got through dinner.  I’d felt sick all day, physically upset at the change in Pudding.  My sunny little girl once again plagued by anxiety.  I didn’t want to go back to real life, but it was already over.  There is more work to be done, and the gown and veil would just get in the way.

Then this morning she woke up….fine.  After a brief attempt to let me know she wasn’t going to school today, she nonetheless got ready, and helped pack her lunch bag.  She said nothing on the journey there, but when we arrived she went straight to her cubbyhole, left her backpack, and went to join her class.  No fuss, no drama, no tears.  There was even the tiniest smile as she began her day.

The honeymoon might be over, but that doesn’t mean there can’t be a happy marriage, even with ups and downs.  We’ll enjoy the good, and support one another through the bad, and when this tour is over, we’ll be stronger and closer than ever.  You never know, sooner or later we might even get a second honeymoon.

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Written by Spectrummy Mummy

August 25, 2011 at 4:11 am

Bend, but don’t break

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I’ve been writing recently about little bits of progress here and there that Pudding has been making.  I’m not entirely sure why this is happening, just natural development, or because of different therapies and accommodations we’re trying.  For instance, with Pudding’s allergies, she is by default eating a gluten-free, casein-free diet, which may (or may not) be helpful for those with autism spectrum disorders.  We finally found speech and occupational therapists who accept our health insurance, so she is back to having regular sessions.  She just completed her third round of a home-based program to help with her auditory processing.  Finally, she has been out of school, and spending more time playing with her brother and I.

At the same time, though, we have seen some regression in certain areas.  Relative to her diagnosis, Pudding has generally been quite flexible, but that has changed recently.  We even abandoned visual schedules (helpful for most ASD children) because she just didn’t seem to require a set routine, and was okay about not knowing what was coming next.  It seems though, without intending too, we’d established a couple of routines.  And once those routines were established, Pudding didn’t want to let go of them.  At the mall, we’d go window-shopping, visit the play area, then go get something to eat.  On Friday night when we we headed straight to the restaurant instead, we ended up dining with a very miserable Pudding.  We went to the play area afterwards, and equilibrium was restored, but getting through the meal was much tougher than usual.

Also this weekend when she rode the carousel at her favourite playground, she didn’t get to ride the horse she specifically wanted, and sobbed the whole way round.

Somehow, she has determined that I’m the only person allowed to put her to bed, and mandates every night that Daddy will put Cubby to bed so that this remains the case.  She also has to wear a princess nightgown, and a full-blown meltdown will ensue if she can’t find one.  We go along with it, because bedtimes are a battle, and we’re weary of the fight.  The happier she is upon getting into bed, the sooner she’ll go to sleep.

None of these instances are especially bad.  In fact, some of you are probably reading this and wondering what I’m making a fuss about, that we have it so easy  by comparison.  We do, of course.  Yet once we had a little girl who just would get excited about things happening in the moment.  I miss that.  She loved flying, so she was excited to go on a plane.  She loved children, so she was happy to be around them.  Increasingly I’m seeing more conditions being set, and order established to how events should occur.  She is losing her flexibility.  This scares me, not only because social interactions demand a certain amount of give and take, but also because we will be moving next year.  Moving to a different country is going to require that she bends a great deal without breaking.  We have to move, but now I’m concerned that she isn’t going to be resilient enough.

Developmentally, a lot can happen in a year.  I know that two years ago I’d never have believed you if you’d said she had autism, or that she would be rigid or inflexible.  There never seemed a child better suited to the Foreign Service lifestyle than Pudding, who loved the excitement of new places.  Now I’m less certain.  I don’t yet know where we’ll be living this time next year, but we might have a way to go before we get there.

Written by Spectrummy Mummy

August 30, 2010 at 7:21 am

Steps

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When your child is typically developing, you see progress in steps.  Your little one moves incrementally forward, passing the developmental milestones.  And while there might be a couple of steps backwards at stressful times, and jumps forward at others, usually you can count on a steady pace in the right direction.

For spectrummy kids, this isn’t usually the case.  When we think of autism, we think of the monster that is Regression.  Regression doesn’t push your child down a step or two.  Regression clings on to your little one and pulls so hard that somehow you are 18 or 19 steps backwards.  As a parent you can only watch in horror.  You can’t fight this monster.  And all the hard work your baby has put in, so, so much harder for her than others, is gone.  You think about what a waste of time and effort all those occupational therapy and speech therapy sessions were.  You hate that life has to be so much harder for her.

Then there is Progress.  She is a visitor who never overstays her welcome.  A sprite you try to capture, who flies away before you can grab hold.  But somehow that sprite has left a magical gift.  And it is never a step forward, but a leap.  And you can’t fathom how that leap happened, but you don’t think about it too much.  You just delight, and tell everyone.  Everyone.  That was your kid who attracted the attention of the waiter (okay, manager, but who can tell the difference?) and requested another drink.  And you don’t care that her friend did that two years ago.  It is our Progress, don’t take it away from us.  She has to visit someone else, but she’ll be back.  We’ll be waiting, ready to move forward again.

When you see your friends, they’ll ask a deceptively simple question about how you are doing, and you always answer “fine”.  You have no idea how to put this into words.  There are highs and lows that other people never experience.  We are running our own race.  It is chaotic and challenging, exhilarating and exhausting.  We just put one foot in front of the other, because we know no other way to make those steps.

Written by Spectrummy Mummy

July 24, 2010 at 7:35 am