Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘parent

Where We Belong

with 18 comments

We’re running our own race here

There is nothing like going to a local community event to make you realize that we’re not your average ordinary family.  Today was Sports Day at Cubby’s school.  The 18th annual sports day for this preschool, and most families have been coming here to cheer on the kids for years now.  This was our first time.

Most of the other families have lived around here for a while, and they know each other.  A couple of faces were familiar to me from morning drop-offs, but we were definitely the outsiders.  One mother, hearing my accent, asked where we were from.  Did she mean my country of birth, my husband’s or the kids’?  I could have given her three different answers for a fairly simple question.  We don’t belong here, but you can’t tell that just by looking at us.

Nobody really noticed that Cubby wasn’t trying to win.  He was more focused on what the other kids were doing than what he was supposed to do.  And probably nobody noticed that his muscles tired a little sooner than the other kids his age.  He wasn’t first, he wasn’t last, he did what he needed to do.  He passed.

But those sitting close to us probably soon noticed the five-year-old who is the size of a nine-year-old who was constantly squirming and repeating the same phrases over and over, and twirling hair.  Indeed, when twirling her own hair and mine wasn’t enough, Pudding moved on to the long braids of the lady sitting next to us.  But she doesn’t want to twirl a stranger’s hair, so she asked her name.  “It’s an African name,” replied the lady with a smile.  “Hello African,” responded Pudding.  You can’t make this stuff up!

Pudding doesn’t really pass any more.  Her differences are too apparent, too inappropriate for her perceived age.  Even her actual age.  But if she has realized that, she hasn’t expressed it yet to me.  There is solace in that- I’d rather have my girl unaware than hurting.

This sports day required actual participation from the families too.  There was a mum’s race (I came fourth!), dad’s, grandparents, teachers, brothers, and-yes- sisters.  The groups were divided up into big sisters and little sisters.  Even if Pudding was up against kids her own age or younger, racing isn’t something she really understands.  She has no competitive streak that makes her want to be first to the finish line.  She only “runs” while holding my hand, and even a few years of OT and PT haven’t changed that gallop into a running gait.  There were many reasons for Pudding sitting this one out, but none of them mattered; because I asked if she wanted to run with the other sisters, and she said yes.

She was on her marks, she got ready, but she didn’t go at the same time as the other girls.  I encouraged her and she set off, then twirled around, then galloped on a pace or two.  The race was already won, but for us it wasn’t over.  I could hear the cheering and applause, and I heard it die down.  Pudding wasn’t even half way through.  But she kept going, and I kept cheering.  By the time her gallops took her across the finish line, the next racers were already lined up.

But it didn’t matter.  Pudding was pleased with herself.  I spun her around in victory, and we returned to Cubby and Daddy and we all cheered her on as if she’d just competed in the Olympics, and won.  And right at that moment, I thought about how all of you would be cheering too.  There is a place where we celebrate triumphs that most people don’t even recognize.  Where we don’t stop cheering until every child makes it to the finish line, in their own way, in their own time.  And that is where we belong.





Written by Spectrummy Mummy

July 21, 2012 at 6:33 pm

Working Mother

with 3 comments

I went to work today, for the first time in seven years.  I’m now a working mother, or a mother working outside of the home for the first time.  I ate lunch today with my colleagues, and only when somebody asked for a napkin did I realize that I’d taken a pile of them, to deal with the inevitable spills that I invariably deal with.  But not any more, during the weekdays at least.

And when I went to the bathroom, I did so much enjoy going alone, yet I still forgot I could use the hand dryer with no Pudding and Cubby around.

But those were the only times I noticed a big change.  I’ve arranged my hours so that I collect the children at 3.  Aside from the fact that I’m wearing make-up and nicer clothes,the kids haven’t noticed a change in routine.  As transitions go, this has been effortless.  I told you I was prepared.

In fact, working as a mother feels so far like, well, working.  It helps that I’m only working 32 hours a week, and it helps that my supervisor is family-friendly.  It helps that I’ve already put trust in other people to take care of my kids.  But I don’t feel at war, with other mothers or with myself.  In fact, my views on the “Having It All” debate are largely unchanged.

I didn’t work for the early years of child-raising because I had the privilege of staying at home.  Yes, we made sacrifices.  We couldn’t afford to visit my family for three years, and things were tight, but having a parent stay at home was an option for us, at least in the short-term.  We were fortunate to have that privilege, I have never felt like I made a sacrifice.

And now, we’re fortunate enough to be in a position when I can return to work, and it can be my choice.  That choice is a privilege many women will never know.  I don’t feel like I’m making a sacrifice.  Maybe because I’ve seen both points of view, I didn’t feel like making a choice between family and work was the right focus…but having the ability to choose really is.

I want my daughter to have these same choices that most of us take for granted.  I don’t know how Pudding will progress.  Autism is a lifelong disability, or difference, or disorder.  Call it what you will, it makes it hard to predict the future.  I can’t say if Pudding will be able to work, or if she will have a family.  Maybe she’ll want both, or neither, or just one.  I only know that we will do everything we can to make sure she has those options, just like the choice was always there for me.  And making that choice available?  That is the real privilege for this working mother.

Written by Spectrummy Mummy

July 16, 2012 at 7:51 pm

Something Blue

with 13 comments

It happened on this night.  After I was done crying, and Spectrummy Daddy had talked about ways we could make things easier on me, I went upstairs to bed.  Sitting on my bed was a small jewelry box, the kind that usually contains rings or earrings.

My first thought was that he’d had my wedding and engagement rings fixed after I’d had them cut off.  Which was odd, because my ring finger still bore a groove where the rings had become stuck.  It will actually take a few more weeks until they’re fully back to normal, though they aren’t as swollen as they were back then.

That meant it had to be a gift.  Very frequently, I’m aware that I don’t feel what I’m supposed to.  Perhaps something else I have in common with my girl.  I didn’t feel happy or grateful.  I was actually a little annoyed that he would think I could be bought from my sombre mood by a trinket.  I was also thinking of the many things we need over and above jewelry for me.  I thought about telling him to return it, we just couldn’t afford it.

For a while it sat there, unopened.  Then I let out a few more breaths, and decided not to turn a nice gesture into something that would hurt us both.  I opened the box.  Inside was a beautiful blue-violet tanzanite ring.  Now I knew we couldn’t afford it.  I tried it on the ring finger of my right hand, and it fit perfectly, like it was meant to be there.  Now there was no question of returning it- I didn’t even want to take it back off!

Spectrummy Daddy came upstairs and filled me in on the story.  While I’d been inside the jewelry shop having my rings cut off, he’d been trying to keep the children occupied outside.  Pudding had picked out this one, and Cubby concurred.  I have to say- those kids have got great taste!

It was supposed to be for my birthday and Mother’s Day, but Spectrummy Daddy told me he felt that I needed to see right then how much I meant to all of them.  I haven’t stopped wearing it since, though I remove it a few times a day for some of the grubbier tasks that come my way.

Rings, while expensive, can be replaced, or fixed, or new ones can be bought.  I’m the thing our family can’t afford to be without.  I’m just as precious to my family as they are to me, and right now I need to treat myself as something fragile and valuable.  Now I have something blue to remind me of that always.

Written by Spectrummy Mummy

April 6, 2012 at 2:17 pm

A is for Advocacy

with 13 comments

I have decided to begin an A to Z series of postings.  Because I’m the kind of person who just has to start at the beginning, here I am at the letter A.  A is for many things.  A is for Autism and Asperger’s, of course.  A is also for ADHD, another diagnosis for Pudding.  A is for anxiety, goodness knows I’ve written about that, and hardly covered how it impacts our life.  A is for auditory processing dysfunction.  I could keep going, but today I’m starting with advocacy.

Whenever power cuts and my lousy internet connection have permitted, I’ve been following the dialogue series between parent-advocates and self-advocates.  I’m glad I have, it has been illuminating, and I’m very glad TGPA provided this forum to air this most necessary discussion.   Are we as parent-advocates listening enough to what self-advocates are saying?  Can we really be doing so when organizations involving autism research and support don’t consult with adults with autism, effectively barring them from the conversation about them.  Who knows autism better?  Someone who lives with it, or someone who parents a child with the diagnosis?  Both the (ongoing) series of posts, and the many comments have left me with much food for thought.

We have to start listening to what adults on the spectrum are saying, and supporting them in their advocacy efforts, particularly when, especially when we as parents don’t like hearing what they have to say.  As was mentioned in the posts and comments, there is a difference between parental advocacy and public advocacy, and it is clear that adults on the spectrum will do a much better role at the centre of the latter.  I plan to embrace my role as supporter and ally, learning when to speak out for my child, and when to listen.

I can’t help but think of Pudding, and how she might feel as an adult if her opinions and advocacy efforts were dismissed in favour of mine.  It would be absurd, it would be wrong.  Yet this is the experience of many adults brave enough to advocate in a world that doesn’t welcome them or their opinions.  It is hard, for us as parents who have nurtured and protected our dependent children to relinquish that role as our children age.  I saw it in several families when I worked as a carer.  I’m certain that I’ll struggle with it too, as most parents do.  My job is to help Pudding become as independent as possible, even independent of me.

Pudding herself as an independent streak running through her.  If she is able to do something herself, she will do it, and refuse any assistance.  Our efforts as parents lie in encouraging and motivating her to do those things that she struggles with, many of which will be necessary for independent living.  Her current educational/therapeutic program features some intensive occupational therapy.  She makes a game effort, but sometimes the tasks are just too much for her.

One day last week I collected her from school, and her teacher informed me with a smile that Pudding had been “non-compliant” during a challenging activity.  Struggling to find the right words to tell her she needed a break, she told the teacher that she (Pudding) was naughty and needed a time out.  Her school has a calm room with a ball pit and swings, and her teacher directed her there for as long as she needed.  We’ve established goals for speech therapy to learn the phrases to say when she has had enough, and we continue in occupational therapy to find ways to help Pudding learn what helps her to regulate when her senses are overloaded.

My girl is fortunate enough to be in a place where she can assert herself, and she will be listened to and respected for it.  I only hope that I can say the same thing when she gets older.  As parents, we don’t have to wait to start listening, not when there are adults struggling to be heard right now.  It might be the greatest act of advocacy we can perform.

Written by Spectrummy Mummy

September 26, 2011 at 8:19 am

Wit and Wisdom from the Parents of Special Needs Kids

with 7 comments

Look, a book!  Forty of the best special needs bloggers have contributed to this collection of stories about parenting our amazing kids.  I’m honoured to have taken part in this collective, which will make you laugh, cry, and realize that you’re never alone.  All the stories have never been published before.  Click here to find out more.

Written by Spectrummy Mummy

September 20, 2011 at 3:06 am

Idealist and Realist

with 11 comments

When Pudding was born, she was pure and perfect.  I was determined to keep her that way.  I would only nurse her, no chemical formula for my baby.  No pacifier, my baby wouldn’t have nipple confusion.  When she was ready, I fed her the organic, mostly locally-grown vegetarian diet that I ate, cooking all her meals from scratch.  She wore cloth diapers, and I used non-toxic cleaning products.  I’d encourage her to play with handmade wooden toys, and not allow her in the presence of TV or electronics.  I’d expose her to foreign languages and museums and art galleries.  She would always be perfect.

I was the Idealist Mother.  The Green Goddess of parenthood.  I never said it out loud, but I knew in return I’d have a perfect child.  I had no problem with other people doing those things with their children, but it wasn’t good enough for mine.  It was smug, it was judgmental, it is how I was.  Nothing could go wrong, if I did everything right.

But right didn’t seem to work.

The first thing I caved on was the pacifier.  There was no nipple confusion here, she knew exactly what they were, and needed them in her mouth the entire time.  Or she’d scream.  The entire time.  I was ashamed, but the pacifier stopped it.  She needed it, and I gave it to her.

I kept nursing her, but her appetite was insatiable, and it left me drained.  I finally got over myself, and tried formula, and the instant she put the bottle to her lips, she was allergic.  How could it be?  I’d done everything right!  Well, except for fixing her genetic predisposition.  My first taste of not having control.  I didn’t like it.

And then I was on a slope.

Once I started making food around her allergies, I lost my passion for cooking.  For a while I carried on making different meals for everybody, but then came the second pregnancy with complications.  When I began to crave chicken, I gave in and ate some for the first time in 10 years.  Then I discovered how easy it was to make one meal everyone could eat- there was no going back.  With more allergies, and a picky eater in Cubby, there are days I wish I could just get a break from the preparation and cooking and get fast food.  The old me would be horrified.

Though Pudding wore cloth diapers until she was potty trained, this Green Goddess failed with the second child.  When I observed that Pudding was more attracted to noisy cause-and-effect toys, we bought more and more of them.  Going to museums became difficult, a much rarer event.

And the languages.  I stopped trying to teach her French and Spanish.  She’d picked up a few phrases, and a couple of words in Luxembourgish and German, but she always using them in the exact same context.  Eventually I realized she was doing the same thing with English.  Our friends who allowed TV had kids who had better language skills than she did.  I eased up on that too.  When I saw how technology could help my child to learn, I embraced it.

Eventually this week I came to the decision to do something I vowed I’d never do- even after Pudding was diagnosed with an autism spectrum disorder- a medication trial for her ADHD and sleep disorder.  Putting something chemical into my pure, perfect baby would have been inconceivable to me a few years ago.  It is hard to let go of the idea that I’m failing her when I don’t match up to the ideals I’ve always held.  But those ideals just haven’t been able to deal with the reality of parenting.  Just like I require my kids to be more and more flexible, I’ve had to bend too.  And I’m certain that there’ll be more bending to come with time, as those ideals get left further behind, and my care becomes more pragmatic.

Perhaps not.

One thing that Realist and Idealist Mother have in common is that she wants the best for her kids.  She just finds different ways now.  Another thing?  My babies are still perfect in my eyes.  I’ll never change that much.  The Idealist in me keeps looking for ways to make this world a better place for my kids to live in, the Realist is helping them adapt instead.  I’m hoping that the two sides keep each other in balance, and show my kids that things are never black and white.  There is always another way to look at things.

Written by Spectrummy Mummy

June 16, 2011 at 7:51 am

Living abroad with a special needs child

with 3 comments

So what I didn’t tell you when I wrote my letter to editors last week, was that it wasn’t the first time I’d tried to get magazines to address their lack of coverage of special needs issues.  From the beginning of my involvement in the exchange with Parents magazine, I started paying attention to web sites and magazines to see if they fared any better.  On the whole, they didn’t.  So every time I tried and failed to find what I was looking for, I’d contact them with my complaint, and wait for the response.

By and large, I’m still waiting.  That is the problem with being invisible, of course.  It takes a lot of us saying the same thing to get noticed.

One time I clicked from a fellow foreign service blogger’s site to Expat Arrivals, and again, I noticed there was no mention of special needs issues within the expat community.  I was unsure if I should approach them in the same way.  After all, special needs parents make up a small proportion of expats.  But then I thought about it.  In Pudding’s preschool autism class of just 6 children, one girl had been born and raised in the Middle East, and a second child (besides Pudding) is about to move overseas this summer.  A further two boys are first-generation immigrants.  These are issues affecting 5 out of 6 children in her class.  I know this area is more geographically mobile than many parts of the US, but that still makes a sizable group of children sharing similar experiences to Pudding, not to mention the many children of Foreign Service Officers who have special educational needs like our daughter.

To my surprise and delight, the editor emailed me back, and acknowledged the lack of coverage in this regard.  Then she asked for my help in providing an article about our expat experiences.  Expat life is about letting go of your expectations, and finding the enjoyment in a different way of living.  There are highs and lows, but it never gets boring.  Does that sound familiar to my fellow special needs parents?

Here is the link if you’d like to read more, and here are other posts I’ve written about my take on living the expat life.

Written by Spectrummy Mummy

June 7, 2011 at 1:15 pm

Turning Visible

with 23 comments

Dear Editors,

I don’t have a lot of time to read, but I do spend a lot of time in waiting rooms.  Too much time in waiting rooms, actually.  I see all kinds of parents like me in there.  Stay-at-home mothers and fathers, ones who go out to work, ones who work at home, parents of multiples, parents of adopted children, parents of only children, parents of lots of children, expat parents, gay parents, ones who married their childhood sweetheart, single parents, divorced and remarried parents, mixed culture and multiracial parents.  I’m a special needs mother, you see.  We’re all different.

We think differently too.  We can be a contentious group.  Sometimes we feel so passionately about something that we drown each other out.  The powerful voices which get heard are not necessarily the most accurate.  Day in, day out, we witness our children struggling, and we forget that there are other kids struggling in different ways.  We scour books, magazines, and the internet for the information we are looking for, but forget to take in another account.

So I understand, I do, that it is hard to speak to us.  I get that when you try to print information, it becomes a debate.  If you focus on one disability, it excludes others.  You choose a celebrity spokesperson for the cause, and ordinary special needs parents can’t relate, or disagree with their stance.  You find medical experts to write on the subject, and still we complain.  What does a doctor know about our lives?  The clinical analysis of the doctor and the parent’s loving description of their child are completely at odds.  And parents change too.  Perhaps what seemed to be insurmountable barriers at first later become hurdles to be leaped.

You’ll never get us to all agree about what you should be publishing, so save yourself the hassle.  Continue to ignore the issues, and save yourself the backlash.

But there is something I think we all manage to agree on: we’re invisible.  We can’t see ourselves, or our kids in the media.  It isn’t just our children who feel marginalized and excluded.  When you don’t cover special needs issues in your magazine, you send the message that we don’t matter.  It creates a barrier between parents of typically developing children and those whose children are developing differently.  If you’re the parent of a special needs child, you want other children to understand and respect those differences.

And if you’re a parent of a child who is typically developing, you want your children to understand and respect those differences.  Because now more than ever, your children will spend time with ours.  They’re in the same classrooms, playgrounds, communities, and increasingly, the same families.  We are friends and relatives, and we need to know we matter.

I urge you to dedicate a section of your magazine each week to the special needs community.  There are many different parents raising kids with all different kinds of disabilities.  Let us see them.  Hear our voices.  Present a platform that represents every parent, every reader.  If your magazine, or part of your magazine discusses parenting, it is your duty to write about all kinds of children, and all kinds of parents.

The father whose child isn’t able to sit up by herself at one year old wants to see himself when reading your magazine.  The mother who can’t manage to take a shower because her children need to be watched constantly needs to see know she isn’t on her own.  The grandparents who have never met anyone but their grandchild using a G-tube want to know there are others out there too.  The mother who doesn’t understand why her toddler can’t say mama, let her read possible reasons in your magazine so that she might discuss them with her pediatrician.

When I read your magazine, I feel ignored and invisible, but I’m lucky enough to know that I’m not alone.  You have it in your power to make all of us turn visible.  Let us see ourselves in your pages.

Yours Faithfully,

Just another special needs parent.

Written by Spectrummy Mummy

June 2, 2011 at 7:26 am

Social Smiles

with 8 comments

Pudding, 5 weeks

Yesterday I watched a friend enjoy the smiles of her infant- trying to determine if they were the first deliberate social smiles.  I remember once watching a documentary on human behavior which speculated that babies begin their “social smile” to caregivers at around 4 weeks old, because that is precisely the point at which a sleep-deprived parent needs something in return for taking care of the demands of a newborn.

Pudding met all her developmental milestones for the first two years of her life, and her first little smiles at one month were no exception.  Of course, I completely took those magical smiles for granted a the time.  I never knew how lucky we were to get them, nor how hard it might be to care for another without that basic reciprocal exchange.

We expect parenting to be about hard work and self-sacrifice at times, but the very fact that children are typically hard-wired to demonstrate emotional attachment in return indicates that we as humans find that difficult to do without reward.  So naturally, it gets harder to parent a child who is not hard-wired in this way, or desires interactions only intermittently, or whose sensory needs interfere with that normal process.  Behaviors seem more challenging, relentless even.  I wrote about my version of finding that difficult in my post on Friday.

Just like how the baby’s first smile comes in the nick of time, our community pool finally opened on Saturday.  Though we had other chores to do in the morning this weekend, we spent the afternoon at the pool.  The smile on her face told us Pudding was in heaven.  She was sated.  She got the input she needed, and peace was restored to our family.  As soon as she was in the water, she began interacting more with us, wanting to play games.  Back to being a happy family.  Not to mention that with Spectrummy Daddy home from work for three days, I got to take my shower every morning.

Of course, we are back to the normal routine today.  Pudding is back at school, we can’t go to the pool until late afternoon.  On Friday I’d emailed my friend complaining about how I had to give up another thing, and I was really running out of things to give up here.  But I was looking at it all wrong.  Though we can’t manage it all the time, saying yes to what Pudding wants makes all our lives easier.  Instead of giving up, I need to look at it as gaining something, like the new parent trading sleep for the baby’s smile.

I just have to find a way to make sure it doesn’t have to mean saying no to me all the time.  I tried taking a shower with both kids this morning, but I won’t be trying that again- Cubby felt crowded in there.  Tomorrow I’ll try the morning bath for the kids, and I’ll delay my shower.  I’m certain I’ll find a solution sooner or later.  Let’s hope that is enough to out a smile on all our faces.

Written by Spectrummy Mummy

May 31, 2011 at 8:43 am

Paper Cuts (at Hopeful Parents)

with 6 comments

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