Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Attention deficit hyperactivity disorder

Letting Kids Be Kids

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You’ll have to forgive my mood in this post.  I have a particularly nasty chest infection.  It hurts when I move, laugh, talk, or- you know- breathe.  Pudding is also home ill with tonsillitis.  She complained about her head hurting at the weekend, and took an extraordinary (for her) five hour nap on Sunday, but since we visited the doctors and got her medicine, she seems back to herself.

With one exception.

Because she had a fever, we didn’t give her her usual medication for ADHD.  Sometimes Pudding is doing so well, I forget what a vital component medication has been for her.  Then we take a break, and I remember.

I remember Pudding before she was five, with a body and brain that seemed to be in overdrive.  And now, even though she is ill, it is just the same.  Her body can’t get the rest she needs to recover.  Her brain is seeking stimulation that she just can’t handle at the moment.  She needs to rest, and that is the one thing she can’t do.

I never wanted to put Pudding on medication.  I looked in vain for another way.  We tried a few ADHD treatments where we felt the side effects were worse than the results, and then made a last-ditch attempt before giving up.  Her particular chemistry found the right match, and the hyperactivity reduced considerably.  It isn’t perfect, she still struggles greatly with attention, but her engine isn’t in overdrive any more, and slowing down just a little has helped her in every possible way.

Honestly, I don’t know if the child who couldn’t sit for even 20 seconds would have been welcomed into a mainstream class.  I’m not sure if the child who skipped through books so quickly that every single one we owned was torn from its bindings would have ever slowed down enough to learn to read, or write.  I know that she finds it easier to get through her various therapies now.  I know that she is able to learn now.  And play.  And swim.  And do all the other things that kids can do.

She may have made this progress anyway, but seeing her these last couple of days makes me think it would have been slower, and harder.  The faster her wheels spin, the deeper she sinks into a rut.

I’m not saying that medication is for every child- far from it.  Stimulants were terrible for Pudding, and a spectrum child seems far more likely to have atypical side effects.  I still want to be the idealist mother who could find another way.  But I know we made the right choice for our kid.  I know that she is happier, feels better, when she can calm herself.

So what really ticks me off, is when I read yet another unscientific article about how ADHD (and sometimes ASD) is a construct of our times.  Sometimes people actually send me these articles, wanting to help, I suppose, but doing quite the opposite.  I can think of a dozen other ways to help other than telling me I’m doing it wrong.  Sometimes I read, sometimes I just delete.  They always read the same.  Parents and doctors don’t let kids be kids, and if we just let our children play outside, or kept them off candy/ computers/ TV, or gave them the right diet/ vitamin/ parental attention they would be fine.  Let kids be kids, and don’t turn them into zombies!

When the truth is- I just want to let my kid to be a kid, that is all I’ve ever wanted.  This is one of many ways I help her to do just that.  I wouldn’t even care about how exhausting her condition is for me, if it wasn’t even worse for her.  There is no magic pill, but if there is something that helps her, perhaps even reduces the risk of harm coming to her, I’m going to keep on doing it.

And if there is anyone who thinks Pudding’s ADHD or her autism aren’t for real….well, they’re more than welcome to come here and get a dose of reality.  Because much as it hurts at the moment to chase around a child who can’t keep herself out of harm, it hurts a whole lot more to be judged for doing it as well as I can.

Written by Spectrummy Mummy

May 21, 2013 at 12:39 pm

American Girl and Boy

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“I have survived the American Girl store experience. I am bloodied but unbowed.”

My husband’s Facebook status yesterday evening.

American Girl

After a month of earning tokens, Pudding finally got to bring her Kelly doll home.  As one last treat, we’d arranged her to have dinner at the American Girl Bistro.  We’d used a velcro calendar system to count down the days, and by the time it came around, Pudding was buzzing with excitement (and with her very own little cocktail of autism and ADHD).

I told the kids that the day had finally arrived and we were going to go to American Girl.  Cubby immediately announced that he wanted to go to American BOY!

Now once upon a time, back when I was an Idealist, I’d have been horrified at such entrenched gender stereotypes as my children were displaying.  I would buy books and blocks for Pudding, steer her away from Barbies and other dolls.  But every time we went for a play date, she would gravitate towards dolls.  From the first day she could state her preference, she announced pink was her favourite colour.  She would wear dresses only.  She loved princesses.  She was a girlie girl, despite my best efforts.  Like many things, I soon learned that I couldn’t steer this child- I was along for the ride.

American Boy

Her apparent femininity was sometimes at odds with her personality.  She was always hyperactive, and she loved running and climbing.  She loved chaotic environments, and being with other kids.  She was also the toughest kid I ever met.  She would fall a lot, but rarely cry.  I didn’t know at the time that this hypo-sensitivity was a symptom of her autism.  I was just bemused by this tomboy-meets-princess.

And then along came Cubby.  I assumed that growing up in such a girlie environment, he’d play with the dolls and princesses too.   But very early on he expressed an interest in firetrucks and trains.  And unlike his tough cookie sister, Cubby overreacted to most sensory input.  He seemed delicate and fragile; preferring peace and quiet, he shied away from other kids.  Thanks to early intervention, he is far less defensive these days, but most days he is still the polar opposite of his big sister.

Nothing teaches you about gender stereotypes like actually spending time with young children.  By the time we learned how difficult it could be to engage them, we were happy to use any and all interests to play with them both.  I let them choose what those interests are.  I let them choose who they are, even if that doesn’t quite match with all those good notions of parenting I had before I was actually a parent.

Armed with a train set for Cubby, we reached American Girl with a prancing Pudding.  She galloped around the store with her new doll, smothering her in hugs and kisses.  The wait for the table was excruciating.  She was excited by the doll having its own special chair and cup and saucer.  She was excited by all the pink.  She was excited by all the girls and dolls.  Naturally, she was too excited to actually eat.  She hummed with pleasure.

When the server made an announcement for us to sing Happy Birthday to another girl there, Pudding wanted to join them for cake, and we had to explain that we can’t sit with people we don’t know.  To her credit, she returned to her seat.  We ate as quickly as we could in the face of imminent sensory overload.  Though she was dazzled by her surroundings, she made every effort to follow the rules for dining out.  We were bloodied, but unbowed.

To the average observer, they looked like just another American Girl and Boy, but forgive me for thinking they are so much more (they’re English too!).

Written by Spectrummy Mummy

July 28, 2011 at 8:04 am

Win

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Yesterday I won.  It was just a book, an autism-related book at that.

No.

I’m not going to qualify it like that.

Yesterday I won.

I got something for free with hardly any effort on my part.  I didn’t win something, but lose in another area.  I didn’t win something, but discover that the prize came at a cost.  I had an unqualified win.  I needed it.

It feels like lately has been a series of Pyrrhic victories.  Progress in some areas and more difficulty in others.  Getting special education services for Cubby, but failing to get the occupational and physical therapy services he has been receiving.  Or the speech therapy services he is beginning to require.  Finding that her autism symptoms are lessening slightly, but gaining an additional three diagnoses.  Improving Pudding’s ADHD symptoms, but with worsening sleep issues.  Finally getting to try and add wheat back into the kids’ diets, but now a peanut allergy so severe we need an Epi-pen at all times.  Learning that I don’t have tuberculosis as suspected, but asthma bad enough to require medication for the first time in 13 years.


Overall we’re doing okay.  It feels like three steps forward and only two steps back, but it is taking all my effort these days.  I’m not my best self, and I’m hoping that what I have is good enough.  Familiar territory for me.  I’m a good enough soldier to keep battling on, taking victories where I can, and accepting strategic defeats.  I’ll even surrender some areas.  This is just life in the trenches at times.

But yesterday I won.  It doesn’t matter what.  It feels good.  I’m even starting to understand where Charlie Sheen was coming from.

I needed it.

Here’s to more wins for all of us.

Written by Spectrummy Mummy

June 30, 2011 at 8:58 am

Buy one…

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Last week we returned to the hospital for the results and recommendations following Pudding’s reevaluation.  As you may recall, I was worried leading up to the appointments, but managed to reevaluate my own perspective for the actual testing.  Spectrummy Daddy was going to stay at home with the kids, but at the last minute decided we were all going.  I think he thought I as perhaps less calm than I appeared, but I reassured him.  She already has been diagnosed with an ASD, a lifelong condition, nothing is going to change that.

Actually, we do know that some individuals who meet the criteria for an autism spectrum disorder in early childhood no longer do so in subsequent evaluations.  It seems like early intervention can be incredibly effective for some children.  Other children receiving the same services, however, do not make the same improvements, and we don’t know why that is.  We know that therapy is essential for all children, but we can never tell how much progress will be made.

Pudding is in an intensive ABA/VB based preschool autism class.  She also receives private speech and occupational therapies, and we work on developing her skills at home.  We’ve seen her make progress in many respects since her diagnosis.  And yet, we’ve seen new difficulties emerge at the same time.  I knew we weren’t going to be one of the families to be told that their child no longer has autism.  At the same time, I’ve come to terms with Pudding’s differences, indeed, they are part of what makes her so special.  My job is to ensure that she has the best program for her that we can provide, which begins with accepting the diagnosis, and adopting the advice that we had come to hear.  We do the best we can with what we have.  So now let’s see what we have.

The psychologist began by confirming what we suspected: she does indeed still meet the criteria for ASD, and Asperger’s Syndrome is still the best fit for her (until the DSM-V gets rid of that diagnosis).  Her overall language scores were higher than average (pragmatic language of course being the exception).  The rest of her learning profile was very erratic, and in some instances, she performed comparatively worse than she had in 2009.  However, at the same time, she did better at the tests measuring ASD.  She is still an aspie, but less so than she used to be.  Right.

There was more.

She now meets the criteria for ADHD, and the doctor feels that her problems in this area go above and beyond the attention problems associated with Aspergers.  It is possible to have Asperger Syndrome and not have ADHD, but that is not the case for Pudding.  Okay.

There was more.

She also acquired a diagnosis for Developmental Coordination Disorder (also known as dyspraxia).  Her fine and gross motor delays going beyond what would be expected with an ASD.  Well, if you’re sure.

There was more.

One last diagnosis of a Sleep Disorder.  We’re done, right?  Right.

Well, she has to be monitored for non-verbal learning disorder, as she is skating close to the edge of picking up that diagnosis too as she gets older.  I’m only surprised we didn’t gain an anxiety diagnosis there too while they were handing them out so freely!  Buy one, get three free.  The deal of the day, if shopping for diagnoses.

The doctor strongly felt that each of these issues are profoundly affecting her ability to learn and benefit from the therapies and services she receives.  So we need to look at each diagnosis separately to see how it impacts her and what the best overall treatment will be.  We have a lot of recommendations for her program, so now my job is to put the program together for South Africa.  That is the very definition of easier said than done!

She left us with the wise words that just like the first time we met, and Pudding was still our girl- not the diagnosis- so she remains today.  Even if we’ve added a few more diagnoses to the mix.

That is my girl: always a little more than we’d bargained for.

Written by Spectrummy Mummy

May 12, 2011 at 7:18 am