Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘parent

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

Trying to Be a Superhero (Guest Post by Spectrummy Daddy)

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One of the hardest things we’ve had to deal with as parents has been the separation anxiety of our kids.  Pudding had some terrible times when we would leave, and Cubby’s is much worse.  Mummy can’t even leave to go take a shower without him screaming out for her.  It’s a bit off-putting to be honest, and we always make sure that when we have date-night that the kids are asleep before we leave the house.  There is no need to subject our babysitter to that kind of torment.  (Plus, it keeps people volunteering.)  When Pudding asks for Mummy to put her to bed, I have to deal with the screams and temper tantrums that come from Cubby not getting his mummy.  He will calm down, but not before rattling the windows with his histrionics.  And when I have to put Pudding to bed, I get a lot of the same thing.

The thing is, I know how hard my wife works, and she is always there for the kids when they need her.  When Cubby falls down and hurts himself, she’s the one that picks him back up.  When Pudding needs a glass of milk, Mummy does that too.  That probably has a lot to do with it.  As Pudding says, “Daddy has to go to work.”  However, I have to admit, it’s very terrible sometimes being the one left out.  I always fancied myself as a Superhero, trying to do best for my kids, and that they would appreciate me for it, and want me to be there to comfort and hold them.  Maybe it’s because they’re still small, but I don’t see that happening yet.  It does break my heart when in the middle of the night Pudding cries out and I go only for her to say over and over again: “I want mummy.”  Or when I put Cubby to bed have him cry, “I want mummy-cuddle.”  Instead of Batman, I feel more like Aquaman.  A character that’ll do in a pinch, but not the guy you want to carry the story for long.

I shouldn’t complain.  I still get hugs and kisses from my kids, we play and rough house together, and I know they love me.  It’s just sometimes I wish they’d come to me for help and support instead of bothering their mother, who really needs a break.  I’m sure it’ll happen.  Until then I keep hoping that when Cubby and Pudding have an issue that needs solving, I’ll look to the sky and see the bat-signal waiting for me.  And you better believe I’ll get there as fast as I can.  Hopefully in the Bat-mobile.

Written by Spectrummy Mummy

January 18, 2011 at 7:22 am

Time Out

with 15 comments

Friday was one of those days. You know, you probably have them yourself.  Every time you start a job, it ends up creating more work.   Nothing gets finished.   If I’m to tell the truth, and there is little point in doing otherwise, my whole week had been like that.  Somehow all the things I didn’t manage to get around to earlier in the week turned up overdue on Friday.

I knew it would be a day of chores, and Cubby would not be pleased about that.  At least Pudding is at school all day on Friday.  To appease Cubby, I decided to take him to the Tot Time at the local community center.   It seems every mother in the vicinity had the same idea, and after 20 minutes of overload, we retreated.

I stopped off for cleaning supplies on the way home, then it was time to give Cubby a snack before nap time.  As he finished eating, Pudding’s teacher called- she’d had diarrhea and needed to be collected.  10 minutes before we arrived at the school, Cubby fell asleep.  He woke up as soon as his rambunctious and very healthy-looking sister got in the car.

Parents already know this, but to those of you who aren’t aware, I should tell you that a nap of less than an hour is worse than no nap at all.  It fills the child with a demonic energy that compels him to create chaos and destroy calm.  When you throw in Pudding, that mix is combustible.

I spent the day putting out fires, and by the end of the afternoon I was burnt out.   Any patience remaining was extinguished.

Spectrummy Daddy came home from work and took over, but my bitter mood lingered.  I was shouting at the kids, and they were feeding off my toxic energy.   As I put Pudding in yet another Time Out during dinner, I had a moment of clarity: I was the problem here!

With a dramatic flare that teenage me would have relished, I stormed upstairs with the declaration that I was on Time Out.

I sat on my bed, and after a few minutes the tension drained away.   I could see the funny side.  I contemplated giving myself one minute for every year of my life, but anything after 10 minutes would have punished my husband as much as the children.  I went back downstairs to finish my food.

I swallowed my humble pie as I offered everybody an apology for my behavior.   Really though, the next day that hits me like that, I’ll do it again.   I don’t know why Pudding hates them so much: Time Out is just what I need.

Written by Spectrummy Mummy

January 10, 2011 at 6:59 am

Man in comfy shoes disturbs mama bear

with 15 comments

Out to dinner the other night with my mother, we had a conversation where I claimed that the general public crticizes my parenting on occasion, and she refuted this, saying it was mainly in my mind.  She does make a valid point, for the most part other people have more to concern themselves with than how I raise my children.  Also, for the most part, my kids reserve their most challenging behaviors for at home, and are generally well-behaved while outdoors.  Very occasionally though, we have an almighty meltdown with gawping witnesses, and I maintain that their snide looks and hushed comments are not imaginary on my part.  Sadly, I only had to wait until the next day to be proven correct.

On Friday we went to the Magic Kingdom.  Some of you may gasp in horror at the thought of taking spectrummy children there, but it provides just the right level of stimulation for my sensory-seeking girl.  Throw in princesses galore, and no fewer than eight places where she can eat, and I declare it Pudding Heaven.  On a good day.  She started out fine, but as the day wore on, it became too much for her.  She is in a strange environment, with unfamiliar social demands, and a ruptured schedule.  Throw in constipation, and all the fronts converge.

At Disney they have a playground which I hoped might offer a little respite from potential sensory overload. It looked just like one of those soft play areas at the mall, so Pudding dutifully took her shoes off.  I made her put them back on, because the outdoor surface would have hurt her feet, and the crying began.  She ran away (my major don’t at a theme park) and began kicking at me when I tried to get near the shoes.  Daddy had no luck either, and she began screaming and spitting in protest.   By this point she was beyond words, and beyond reason.  We took her to the safety of the stroller to get calmed down.

I sat down in front of her, meeting her flying fists and kicking legs with soothing words.  It takes all I have to remain calm in such situations, but past experience dictates it is the only way to deal with these outbursts when she gets too far.  She eventually stopped, and began asking to go back to the play area again.  I whispered that she would have to wear her shoes, and she began screaming.  When Pudding was first born, the midwife at the hospital in Luxembourg told me she had never in her 32 years as a midwife heard a child scream as loud as Pudding.  She continues to get louder with age.  Perhaps she has a future as a warbler of the Mariah Carey/Celine Dion variety, but right now it is just ear-piercing shrieks.  It is unpleasant, painful even for those with sound sensitivities (sorry Cubby) and I never feel more conspicuous than at such times.

I sat on the kerb in front of her, waiting for the storm to pass.  Next to me was a girl, with her father on the other side.  He gave a sideways look, and then told his daughter that this was not how she was to behave on time out, and she would be punished for behaving like this, with another glance at me.  Now, I’m okay with you using my kid as a cautionary tale, but he wasn’t saying it to educate his daughter, he was talking deliberately loud enough to let me know what he thought of my techniques.  He was talking loud enough for others to hear several feet away.  He was challenging me, and like most animals under assault, I was primed to fight back.

Had there not been my ever-observant daughter and this man’s own child to watch, I might have unleashed my fury at the man.  But I can’t require my overwhelmed child to gather herself together, and then display the same reaction myself.  And I’m not going to criticize somebody else’s parenting in front of their child, unless that child is being threatened or hurt.

Man in the street: I’m not asking for your compassion, I’m not even asking you to stop judging, I’m just asking that you keep it to yourself when I’m in the middle of dealing with something.  Even if you think I’m dealing with it very badly.  It is my kid, my parenting, my problem.    She needs my focus, you don’t deserve it.

As it was, I concentrated on what my kid needed, and a couple of minutes later she felt better.  We had a fantastic time the rest of the day.  It probably deserves a whole other post.

You don’t have to walk in my shoes.  I’m very glad about that, you aren’t cut out for it.  The compassion, understanding and sensitivity would be beyond you.  Besides, your feet wouldn’t look as pretty as mine in sandals.

But man, you disturbed a mama bear.  Your lucky I was in cub protection mode, because if you’d got me on attack, there wouldn’t be anything left of you now.  Or your comfortable shoes that you are so fortunate to be wearing, but aren’t half as awesome as mine.

Written by Spectrummy Mummy

December 5, 2010 at 9:14 am

You know it is going to be a good day when….

with 17 comments

Earlier this week, in my usual miserable morning mood, I almost invented a very bad game, along the lines of, “you know it is going to be a bad day when…”  Like many terrible ideas though, it turns out the exact opposite is pretty good.  Tell me in the comments how you know it is going to be a good day.

I’ll start you off:

You know it is going to be a good day when….

Spectrummy Daddy brought me a perfect cup of tea as ordained in our spoken contract of marriage, even though he is exhausted from not spending the night in his own bed.  And today he did not accidentally put vanilla soy milk in it, so I could actually drink it.

Pudding walked up the stairs on the school bus with alternating feet, and then put on her seat belt all by herself.

Cubby ate all his yoghurt before calling for Elmo.  He used a spoon for some of that.

Cubby asked for a piece of Pudding’s cereal, and she gave it to him without my having to repeat the request.

Of course, there could have been some things that fell in my previous category, but today I’m going to focus on it being a good day.  I might just be right about it.

Now, in the comments, tell me all about you good day….

Written by Spectrummy Mummy

November 18, 2010 at 8:44 am