Spectrummy Mummy

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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

short-sighted (at Hopeful Parents)

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This post was originally published here for Hopeful Parents.


Hopeful Parents

We’d prepared for our visit to the optometrist in every way I could imagine.  I took her to the office the day before the appointment.  We met all the staff, apart from the eye doctor himself, who was out of the office.  I’d looked for a photo of him on the web site, but there was none.  Instead, my social story had to feature a cartoon optician.

We got to the office early.  Too early.  The toys provided in the waiting area barely captured Pudding’s interest for a few minutes.  Then she skipped around the room, touching everything.  Even when her curious, sensory-seeking fingers weren’t trying to touch every single pair of glasses, she constantly ran the risk of falling into the displays.  I was already out of patience when the appointment time came and went without our being called.

Finally a very elderly man walked in.  Spectrummy Daddy and I managed to contain both kids in a corner.  Waiting while our kids caused mayhem would be even more unbearable with a disapproving observer.  The receptionist helped him off with his jacket, then replaced it with a white coat.  He was the doctor?  Oh no.  He was old enough to be Pudding’s great-grandfather.  How was someone so ancient ever going to be able to deal with the boundless energy of my hyperactive child.  I cast a horrified glance at my husband as we were summoned.

The calm and patient mother Pudding needs me to be was gone.  In her stead was my irritable alter ego.  I hissed commands at her.  Stop moving.  Don’t touch.  Be quiet.  The trinity of things that she can’t control.  Everything I did made it worse, which made me more angry.  All that preparation was for nothing.

We got her into the “princess throne” for long enough for him to determine that she has a slight astigmatism in both eyes.  Then she’d had enough of cooperating.  Every word I spoke agitated her, but the optometrist remained silent, and calm.  Had I really judged this man?  Don’t I get mad about people doing that to my girl?  I’d decided that he would be cranky and intolerant before he even began.  But just look: that described me, not him.  I added shame to my negative whirl of emotions.

As I stood there wondering what my next move should be, the optometrist moved a spinning light-up toy over and around my body.  Pudding was entranced.

He told me to watch her as she tracked the toy with her eyes in a smooth motion, her head perfectly still.

“She’s amazing.  She has to make so much of an effort to see, but she follows it better than most people that come here.  I’d like to work with her, she’s really great.”

He asked me how I felt about trying vision therapy with her.  Honestly, I’d found that afternoon so trying that I was filled with dread at having to return on a regular basis.  But that was due to me, Pudding was fine until I’d lost my composure.  I’d looked at this man, but I hadn’t really seen him.  Yet here was my girl at her worst, and he could still see the best of her.  We need him on our team.

He tested me too.  I’m short-sighted, but getting less so as time goes on.  I couldn’t agree more with that assessment.

Written by Spectrummy Mummy

February 19, 2011 at 6:13 am

Mother Wars (at Hopeful Parents)

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


Hopeful Parents

There has been a lot of controversy over here in the US lately over a recent Wall Street Journal article which lauds Chinese mothers over their Western counterparts.  You can read it here, if you haven’t already done so.  The author presents her case that the Chinese raise such stereotypically successful kids, due to the strict upbringing enforced by Chinese mothers.  It has caused an outrage over here in the US, but I wasn’t outraged, I was bemused.  Why?  Because I’m neither a Chinese nor a Western mother.  I’m a Special Needs mother, both alike and different to our cultural stereotype counterparts.

Some of us became Special Needs mothers before their children were born.  They learned while their child was still in utero that their child would have a disability.  For others, they didn’t know until birth that their child was different.  And still others, like myself, had a child whose differences became evident as their development took on a different track.  Some chose to adopt a child with a disability.  Others struggle with coming to terms with the unsuspected turn of events that impacts every member of their family.  Some of us have incredibly supportive partners, others are going it alone.  We stay at home, or we we go out to work, our hearts always with our children.  It doesn’t matter how different we are: we are the same, we Special Needs mothers.

And just as we are the same, we understand something that the Chinese mother who feels superior, and the Western mother who is outraged does not always realize.  Our children are different.  There is no one-size-fits-all strategy to raising our kids, even the ones with the same diagnoses are unique, and our approach to them needs to be just as flexible.  I’ve often heard the complaint that there is no manual for raising a special needs child.  I’m glad there isn’t, it would be useless!  A strategy that works one day achieves nothing the next.  We are pragmatic and flexible.  We do what it takes for our kids to be happy, that thinking doesn’t fit in well with any parenting ideology.  If you think that makes us pushovers, you should see us when our children are mistreated.

At times we have to push our children.  We take our children to hospitals and therapists when the look in their eyes makes us want to quit.  We can be as relentless as the Chinese mother in pushing our children towards our goals.  But our goals are different.  They might be to move our child into an inclusive classroom, or to be toilet-trained, or to bear their own weight for a few seconds, or put on their own clothes, or learn alternative ways to communicate, or recognize colors, or write their own name.  You give us a meaningful goal, and we’ll work harder than any other Mother to achieve it.  And our pride in our children and their determination will exceed what we ever imagined it could be.

At times we are forgiving of our children.  The behavior that would shock anybody else often gets us labeled as permissive.  When we go to restaurants, it isn’t just Chinese mothers who question our methods.  I am the mother who would reward her child for every bite of dinner with a cracker.  The sleepovers, and school plays, and playdates are celebrated as a success, not obstacles in the path to it.  Success is very different for Special Needs mothers.  It is the grace and courage we see every day in our children trying to fit into a world that wasn’t made for them.

We might not get to watch our children become piano or violin virtuosos, but we get to see the magic and wonder of childhood up close and in slow motion.  We get to be awed and humbled by the ordinary, every day.  Western parents tend to give up. When it comes to our children, we will never give up, because they never do.  They would give up anything for their children, says Amy Chua.  So would we, even our dreams of what their future would be.  We give up our fantasy of motherhood.  Our reward is that our kids are themselves, not some projected image of what we want them to be.

We’re irrevocably changed by our children.  We crusade to make the world more accepting.  All decent parents want to do what’s best for their children. We definitely agree on that one.  You won’t find me saying that Special Needs mothers are superior to any other.  Our strength comes from reaching out, instead of tearing each other down.  Though we can be divided, there are places like Hopeful Parents where we can gather to support one another.  That is why we don’t care if at times we are considered too strict, or too permissive, too demanding or too coddling.  We do our best by our kids.  As wonderfully, beautifully different as the mothers who raise them.  

 

Written by Spectrummy Mummy

January 19, 2011 at 7:11 am

Oh Christmas Tree, Oh Christmas Tree (at Hopeful Parents)

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This post was originally published at Hopeful parents.  You can find the link here.


Hopeful Parents

For Pudding’s first Christmas, I began a new tradition of collecting Christmas ornaments from the various places we visited.  Over the first couple of years of her life, we picked them up from Belgium, Luxembourg, Germany, and France.  I particularly like the handmade wooden ones from that part of the world, and we enjoyed traveling to the Christmas markets in search of new ones.

Like many other families, following Pudding’s ASD diagnosis, our lives were forever changed.  Instead of moving on to another country, we decided to remain in the US for a tour to learn all we could about the various therapies and supports she needs.  Now there is no budget for travel.  The only place we have been as a family in the last year and a half is to Florida to visit family.   I thought my ornament collection would dwindle to a halt, but I was wrong.

This year Pudding helped me to decorate the tree.  As placed each one on the tree, I told her the story of each one.  What I didn’t realize until then, was that I’d unwittingly started a second collection of ornaments.  I unwrapped a Bambi ornament, the nickname we’d given her before she was born.  Next came a “Where the Wild Things” ornament we’d bought back when she insisted upon hearing that story every night before bed.  Then last year, we’d got her a Sleeping Beauty ornament when that became her special interest.  One day over the summer at a craft fair I even found an ornament with Bashful.  All the special interests my girl has ever had our hanging proudly from our tree.  This year I’m going to have to find an ornament with Sesame Street’s Ernie for Pudding, and a train for her brother.

It occurred to me then that our Christmas tree is still telling our story, it is just a different journey now.  This weekend we had a party, and as an activity I helped the children make Christmas tree ornaments.  Even a year ago Pudding wouldn’t have had the fine motor skills or patience for such a task, but with a lot of help, she made her own ornament.  I’m going to hang it proudly on our Christmas Tree.

That ornament tells the best story of all.

 

Written by Spectrummy Mummy

December 19, 2010 at 8:04 am

You’re my baby (Hopeful Parents)

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This post was originally published at Hopeful Parents, you can find the link  here.

Hopeful Parents

 

Four years ago this week, I was 38 weeks pregnant. I didn’t know you then. I didn’t love you then. I was two weeks away from meeting you for the first time. I willed myself to have maternal instincts, but they just weren’t there. I took care of you, by taking care of my body that was housing you, but I was just a caretaker. I wasn’t your mother then, I was somebody else.

I wonder if I’d been able to see the future what I would have thought. If I didn’t feel ready for motherhood, how on earth could I have been ready for special needs parenting? What would my intact heart have thought about the thousand times it would break?

Would I have looked at you, my sweet, amazing, resilient, determined child and known how proud I would be of you?  Would I have been surprised that there are people all over the world who love and root for you every day, cheering at your small but significant successes, some without having ever met you?  I’m not the only one to take delight in your your extraordinary everyday achievements.  Back then, I didn’t know any of this.

How would I have felt knowing that I was giving life to such an incredible soul?  One who giggles at jokes the rest of us don’t hear, but are so captivated by that joyful sound that we join in, wishing one day we would understand.  One who sees things differently.  One who is so much more.  One who sometimes feels with such intensity that she has to shut herself off, and withdraw even from those who love her best.  I didn’t know then the ache of not being able to reach you, or comfort you.

As I was packing my bag for the delivery room, I didn’t know how hard this world might sometimes be for you to live in. I didn’t know how strange and scary it might seem. If I did, I might not have been wishing that you vacate that cozy refuge. If I’d known that some people might misunderstand your unique ways, I might have been content to shelter and protect you as long as I could.

I didn’t feel any of that, I felt nothing but a fear of what a more than 9lb fetus would do to my body. Me. It is a good thing I put myself first then. I didn’t know that once I met you I’d never be able to do it again.

That nothing that I felt exploded into everything when I first saw you. When I held you in my arms and you looked up at me, the switch was flipped, and I became who I am now- your mother. I’m still awed by the intensity of your gaze, when I’m fortunate enough to receive it. My heart was flooded with those elusive maternal instincts, so I said the only thing I could manage. It wasn’t profound, it betrays all the love I have felt for you then and since: “You’re my baby.” And four years later, you still are.  But now you’re a sweet girl who dazzles everyone who meets her, and one day you’ll be an incredible woman, and I look forward to meeting you all over again.

Written by Spectrummy Mummy

November 19, 2010 at 6:10 am

Posted in Hopeful Parents

S.M.I.L.E. (at Hopeful Parents)

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Hopeful Parents

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

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.”
Thich Nhat Hanh

 

The Saturday Morning Integrated Leisure Experience is an amazing facilitated playgroup for children aged 3-5 with and without disabilities run by the YMCA for our local county therapeutic recreation services.  They get to do exercise, listen to stories, sing, and art projects.  As Pudding is in an autism-specific classroom all week, this is the only supported time she spends with typically developing children.  As an added bonus, the volunteers are excellent, therefore the rest of the family gets 3 hours of respite.  Time to do those chores that are so much more difficult to do with Pudding around.  Time to spend on Cubby.  You want more?  Okay- every other week they go swimming, with one-on-one volunteers, and learn the basics of water safety.  Are you sold yet?  I am.  They had me at respite.

When we first took Pudding earlier this year though, she wasn’t sold.  She walked in fine, but squeezed my hand harder.  One of the volunteers distracted her with puzzles as I spoke with the leader.  I hadn’t even finished when she was back, climbing up on me as though I were a tree.  I explained how I was going to leave, and she would stay and play, and have fun.  She cried, clinging harder.  I left anyway, leaving her in the hands of the two volunteers it took to calm her down.  I felt that stab of jealousy towards the other parents who could just simply goodbye to their smiling children.  She ran at me when it was time to collect her.  It had taken half an hour for her to calm down and settle in, the volunteers informed me- nothing they couldn’t handle.  (Yes, they’re that good!).

She really didn’t want to go again after that, and would whine through the entire car journey, but she was lured by the promise of swimming.  For the next 5 weeks she continued to go, clinging less each time, but still requiring 10 minutes to calm down.  10 minutes of Pudding crying and screaming and upsetting the other children.  I’ve lived through many of these episodes, 10 minutes can be everlasting.  Then in March the session was over and was not to be continued until October.

Before we knew it, October was here, and Saturday marked the return of S.M.I.L.E.  I didn’t tell Pudding about it.  When she found her old Dora suitcase she would carry her swimming things in, she mentioned taking it to S.M.I.L.E., but I didn’t say anything.  Pudding has been making advances lately, we’re going through a good spell.  I didn’t want to break that spell.  With all the ups and downs that the last month has brought, she has weathered them well, and I didn’t want to take her back to that girl who would sob as I left her each week.  I know that isn’t the bravest approach to take, but it is hard to be brave when you’ve been holding your breath for a long time.

So on Saturday morning, Spectrummy Daddy asked her if she wanted to go, and she said “yes”.  She sang all the way there, then skipped into the building.  She ran into the room when it was time, and started an activity by herself, with a MALE volunteer!  She said goodbye and hugged us, but turned quickly back to drawing.  She wasn’t even distracted by another girl who was flinging herself on the floor in a meltdown like the ghost of Pudding Past.  Was that really just 6 months ago?  I arrived early to collect her and peeped through the glass on the door to see her cantering around the room with some other kids, a huge grin on her face.  She looked up and saw me before I could hide, but she just stopped, beamed at me, then carried on.  When the door opened 5 minutes later, she was happy, but not eager to leave.  She collected her artwork, and said goodbye to the room, and left them with her radiant smile.

I don’t know if this spell is going to last.  I wish I knew what wizardry was making it happen.  It could be the result of her teacher’s efforts, or getting used to being around more kids, or her dietary changes, or the therapies, or just natural development as she gets older.  I don’t know why we go through a huge leap forward at some times, and just as big a move backwards at others.  I don’t get it, I don’t understand it.  It is a mystery.  So movements can be both baffling and bittersweet.  This merry-go-round might just spin us soon in a direction we won’t want to take.  Until then, I’ll smile and enjoy the ride, holding these moments close for sustenance when needed, hoping that won’t be for a while.

Written by Spectrummy Mummy

October 19, 2010 at 7:11 am

Good Enough (at Hopeful Parents)

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This post was originally published at Hopeful Parents.  You can follow this link to get to my post.

 

In the same discussion that the neurologist confirmed: “your daughter meets the criteria for Asperger’s Syndrome”, he also told us that we were “good enough” parents, and we couldn’t have done anything to have changed this. I bristled at the term “good enough”, even as he explained that an eminent child psychiatrist, Donald Winnicott, had coined the term to describe the ideal parent. This ideal parent, according to Winnicott, is good enough, not perfect. The good enough mother initially creates the illusion of perfection, meeting all the infant’s needs, then slowly enables the child to transition towards independence, shattering the myth of perfection.

Instead of being pleased that my parenting was deemed “good enough”, I took this to mean that I could do better. I wanted to be the perfect mother to my extra-special child, I felt that she deserved nothing less. And so I spent the months that followed investigating every therapeutic intervention, every new discovery, reading every book about autism that I could find. I’d spend hours on the floor with Pudding, trying to emulate her speech and occupational therapists as best I could. It wasn’t good enough. I’d set myself a standard of perfection that was miles away from reality. Instead of enjoying my time playing with Pudding, I’d get frustrated that progress wasn’t coming fast enough. It stopped being fun for both of us.

Pudding loves art, but has significant fine motor delays. Frequently she’ll try to draw something, and when it doesn’t match the image in her mind’s eye, she gets angry and scribbles it out. Her desire for perfectionism gets in the way, and consequently limits her progress. She is a chatterbox at home, but virtually mute in company. I often wonder if she is so silent around other people because she so fears making a mistake. I want her to know that any attempt is good enough.
Lately I’ve realized that some lessons need to be demonstrated, behaviors need to be modeled. I’m far from the perfect mother, and trying to be puts too much pressure on all of us. I need to really shatter that illusion of perfection, and show Pudding that I make mistakes, I’m not always successful, but I keep trying. The less I’ve focused on developmental goals when we play together, the more fun we have, the better the connection between us, the more she thrives. We don’t achieve everything we set out to, sometimes we achieve nothing at all. But we enjoy being together, and that is good enough.

I’ve enjoyed reading the moving and inspirational posts at Hopeful Parents for a year now. As I write my first one, I’m still having to remind myself that it doesn’t have to be perfect!

 

Written by Spectrummy Mummy

August 19, 2010 at 6:52 am

Posted in Hopeful Parents