Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for August 2010

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!

 

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Written by Spectrummy Mummy

August 19, 2010 at 6:52 am

Posted in Hopeful Parents

Too late

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We were at a 4th birthday party on Sunday, and we had a great time.  It was a big party, with lots of guests, and had to be moved indoors at the last minute due to inclement weather.  So, too many people and no place to escape.   Usually a recipe for disaster for my girl, but for the most part she behaved very well.  It wasn’t the time to force social interaction with strangers, so I didn’t.  And there were so many kids there that I don’t think anyone but me noticed she only played by herself, and she perseverated on putting a figure in the fire truck.  And I tried very hard not to notice, because I wanted time off too.

It was nice, so what if she wasn’t fully engaged?  She interacted with anyone who tried to get her attention, and I tried not to care that the other kids didn’t try.  After all, they all knew each other from day care, she was the stranger.  She is happy playing by herself, and I’m grateful for this.  For the fact that she hasn’t yet noticed she gets left out, that she is always the odd one out.  We could sit back and chat with friends.  There was so little drama that we stayed a while, perhaps too long.

We knew it was time to go when Bashful was mentioned.  As previously mentioned, he is our ten minute warning to get out of a situation that has become unbearable for Pudding.  So here is what you don’t do when you realize your spectrummy child has had enough.  You don’t, at that point, try to get her to wish happy birthday to the boy she has ignored all afternoon, because you hadn’t facilitated a conversation between the pair.  You see at that point, she is beyond social pleasantries, and is entirely unconcerned with how he might feel.  It is far too late.  And you know, if you’d done it earlier, she’d have happily complied.  She loves her little friend A, and would only want to please him, especially on his birthday.

So when we tried this, and she repeatedly refused, we had to stop trying.  Pushing her would have only led to a meltdown, and the end result would not have changed.  It is a reminder, that no matter how comfortable the situation, there is no time off, no shirking on the duties.  To do so leaves a little boy feeling that his friend was mean to him on his birthday, when she’d been so excited to see him.  And when friends are a scarce commodity, we can’t afford to lose them.  Those social conventions, so unnatural for my girl, are even more essential.  She has to learn to do them, and we have to teach her.

Today, two days after the party, Pudding was singing Happy Birthday to A.  Until she can navigate the social world without our assistance, there is no time off for us.   First we have to make it happen, and then we can relax.

If left to do it by herself, it will be too late.

Written by Spectrummy Mummy

August 18, 2010 at 5:05 am

Cubbyhole

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Now, some of you may have noticed that there is another little person in my life who doesn’t get as much of a mention as his big sister. There is a Cubby-sized hole in this blog. It isn’t right. He deserves his own write-up.

I’ve been putting off talking about him, because I don’t exactly know what to say. Every time I write a post on WordPress, there is a place for me to ‘tag’ my posts and this puts them in a category. I don’t know how I’d tag my boy, and I don’t know what category I’d put him in. I used to think Aspergers was a binary thing, you have it or you don’t, but Cubby is pint-sized proof that this isn’t the case.

When Pudding was diagnosed, Cubby was only five months old. At the time I was angry with myself (and the world) that I’d missed things in Pudding that were suddenly so obvious. I was determined not to miss anything second time around. But Cubby, like his big sister, hit all the developmental milestones. Just like her, he was born liking fans and lights, and tactile sensory-seeking. Just like her, he developed separation anxiety at a very early age, and seemed over-attached to me. And just like her, when I mentioned these things to the doctors, they told me this was normal.

Even Dr. P, Pudding’s excellent, perceptive, developmental pediatrician has yet to see the signs in him, but referred us to a sibling study to monitor his development.

We’ve had two sessions of the sibling study at the Kennedy Kreiger Institute. Each one is a grueling seven hour assessment, and both times we’ve had to split the session over two visits. The first evaluation found him to be developmentally on target, but with joint attention problems. Joint attention is where a caregiver shows something to the child, and he or she acknowledges this and responds accordingly. Joint attention deficits are considered to be the first indicator of autism. Cubby had some joint attention, but hadn’t mastered it. We went to work on this, and by the time his second evaluation had taken place, he had age appropriate joint attention.

We aren’t allowed to breathe a sigh of relief though, because this time around they found problems with his social communication, something that had been one of his strengths at the first visit. At age 16 months he knows and uses many words, he is developmentally ahead, even putting words together, but there is something about his use of words that is slightly off, or atypical, to use the word which frequently describes our children.  I’m working on his pragmatic skills, and teaching him some basic sign language, which enables both sides of the brain to be engaged in communication.  Perhaps we can get him back on track with this too.  Or maybe there will inevitably be another sign emerge, and then another.

Only time will tell.

For the moment, he makes great eye contact, shares his interests and imitates in play. Our local Early Intervention services will only provide therapy if he has a significant developmental delay, or has a formal diagnosis. Saying that I think he could be spectrummy just isn’t going to do it!

The A-word isn’t so scary the second time around, but that doesn’t stop me worrying about my baby boy. This time we know what challenges may be ahead, and how hard it is going to be to meet them, with our increasingly limited resources.

In January we’ve got our appointments for his assessments, perhaps by then things will be more evident. Until then, he just doesn’t fit into a cubbyhole, he can’t be categorized. He just is who he is, and we love him for it.

Stepping into the limelight

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Thursday was Pudding’s last day of preschool for the summer, and Graduation Day for two of her classmates.  At 3, Pudding has another two years of preschool before she will start Kindergarten, though we’ll probably move next year.  She’ll be back in the same classroom in less than a month.  So really, this was a day about the other children who were leaving the class.  Little ones who had worked so hard, come so far, and deserved their moment to shine.  Not, I repeat, not a day about Pudding.

The graduating children of both Pudding’s class and the other PAC in her school were seated at the front with their teachers, wearing mortar boards they’d made in class.  They all looked so adorable.  The teacher read a story, and the kids performed a couple of songs.  While all this was happening, Cubby, Pudding and the other children were playing in a corner of the room.  I was seated a few feet away, ready to grab Cubby should he try to leave the classroom. Not that he had much interest in doing so, for here were cars and trucks galore to play with, and he was in his element.  Still, you never know…

You never know that it will be your quick-as-a-flash girl who will decide to bolt to the front “stage” and sing along to ‘Twinkle, Twinkle, Little Star’!  She doesn’t even particularly like the song, nor have I ever seen her perform the actions to it, but it seems I have a natural-born performer when there is a captive audience.  She had no business being up there at all, this newcomer, stealing the thunder from her friends.  Of course, everyone found it funny, it is hard to take offense at a spectrummy 3 year-old.  All eyes were on her, and she lapped it up!  She had her little moment in the limelight, then was quickly grabbed by Ms. S, so the parents of the graduates could film their kids.

When we first got Pudding’s diagnosis, I devoured everything I could read about Asperger’s Syndrome.  As many children aren’t diagnosed so early in life, there isn’t much information about very young children with Asperger’s.  As there are 4 boys diagnosed for every 1 girl, there is even less information about young girls.  I found some though.  I learned that these girls tend to be extremely shy, and will hide on the edge of a crowd, desperate not to to attract attention.  They tend to be smart and love reading.  Their interests are usually the same as their typically developing peers, such as loving horses, fairies, princesses, they just are a bit more intense about it.  So: shy, bookish, horse-loving…it sounded just like me as a child, but not like Pudding (apart from the princesses bit, of course).

Perhaps Pudding will change as she gets older, but for right now, she is more attention-seeking than shy.  Sure, she gets anxious in conversation with unfamiliar people, but that is because their language is so hard for her to process and respond accordingly.  But she is not shy.  The 3 year-old me would never have got up on front of a room full of people, but she shined!  Even now, I’m uncomfortable in a room of strangers, I hate public-speaking.  Where I was calm and quiet as a child, she is loud and dramatic. She is intense.

I had a funny feeling as I watched her that it won’t be the last time I see that kid on stage.  She loved stepping into the limelight, I have a feeling she won’t want to step back out.

Written by Spectrummy Mummy

August 16, 2010 at 12:10 am

School’s Out

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Pudding had her last day of the summer session of preschool yesterday.  Two of her classmates graduated up to Kindergarten.  There was a ceremony and a party, and as always with us there is a story.  That story will have to wait though, as I’m back in the trenches full time with my hyperactive pair.  So, no new post today.  That one can wait until Monday.

I’m aware that since Pudding’s diagnosis, many of you have questions that you haven’t broached for fear of upsetting us.  Today I’d like you to ask those questions in the comments.  Obviously I’m no expert on Asperger’s, but I do consider myself the world’s expert on Pudding, so I’ll try to answer where I can.  Feel free to remain anonymous if you prefer.  If the answer requires a longer explanation, I’ll turn it into a post.

I’ve also added a rating system to my posts.  I’d appreciate it if you could go back to your favourite ones and let me know.  I’m interested in what you like to read about.

Okay, back to Pudding and Cubby.  I have a l-o-n-g day ahead of me!

Written by Spectrummy Mummy

August 13, 2010 at 7:31 am

Why?

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Pudding doesn’t ask ‘why?’ yet.  Nor does she appropriately answer when asked why.  For instance an exchange could be:

Pudding: I want a paintbrush.

Me: Why do you want a paintbrush?

Pudding: Yes, give me a paintbrush.

Me: Because you want to….

Pudding: Yes.  May I have paintbrush, please?

She is nothing if not polite, but no real answers here.  So many frustrations could be eased if we could just nail this concept.  She knows that she wants to paint, she knows that she needs a paintbrush to do so.  It is all almost there, just one tiny piece left out.  Another reason, I guess, why the symbol for autism is a puzzle piece.

The “wh” questions are generally difficult for kids with autism spectrum disorders.  Pronouns too, which I understand, because they are slippery little suckers that change around all the time depending on who is speaking.  Does ‘I’ mean me or you?  She gets around it by always using names, which is a smart solution for that issue, but won’t help with “wh” questions.  She actually uses “who?”, “what?”, and “where?” all the time, but “when?” and “why?” are just proving more problematic.  I think “when?” is because she has a murky concept of time.  When she doesn’t want to do something, she’ll frequently tell us she wants to do it “later, on Monday”, even if it is a Monday, for example.  We have included “wh” questions on her IEP, but “why?” doesn’t get included as many typically developing children don’t use it at this stage either, she is not considered delayed.

When we reach this point of being able to reason with her, so she can tell us why she needs something so badly, and I can explain why she can’t have something, it will make life so much easier.  We’ll be able to figure each other out, the start of understanding somebody else’s perspective, the seeds that one day might sprout into a Theory of Mind (which is a whole other post, trust me.  Or just google it if you’re curious).

Of course, “why?” will come one day.  When it does I’ll have to be ready with the answers.  I can do “why can’t I have a cookie?” and even try my hand at “why is the sky blue?”.  Sooner or later though, we’ll get the really tough ones: “why am I different?”, “why do I have Asperger’s?”, “why won’t they play with me?”.  I’m not even close to being able to answer, or at least give a satisfactory answer.  In the case of the last one, I’m not even ready to hear that being asked, but I know one day it will.

The other day I found this site which provides free resources for teaching these tricky concepts, and I made a book of why.  With lots of repetition, we’ll get there.  In a year she has come such a long way, I have no doubt we can do this too.

I may not have all the answers worked out, but I do have a response for when she asks me a “why” I can’t answer: go ask daddy.  Sometimes parenting and spectrummy parenting are the exact same thing, don’t ask me why!

Written by Spectrummy Mummy

August 12, 2010 at 6:55 am

A day in the life.

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Wake up, 4.45.  No Pudding, don’t be awake.  Go back to sleep, please go back to sleep.  I’m too tired. She comes into our room, gets into bed.  The day has begun. Don’t be snappy, rouse yourself, wake up! Daddy goes to work.  Cubby wakes up.  I take a shower.  Are they playing?  It is too quiet, what are they doing? They are playing together.  I get dressed, go downstairs taking the kids with me.  Today Pudding starts her trial back on rice.  I make Cream of Rice cereal.  She must be so excited, she has had the same couple of things for breakfast over and over these last few months. She doesn’t like it.  I add blueberries, vanilla, more honey.  She eats most of it.  Cubby loves it.  Get the kids washed and dressed.  Bus comes, Pudding leaves for school.

Clean up after breakfast.  Load dishwasher.  Play time with Cubby, but first must do laundry.  So much laundry, when did I last do it?  Two days ago, three?  Why is there always so much?  Oh no, no detergent! Grab Cubby and go to the store.  Outside is hot, and humid already.  85F reads the car’s temperature gauge.  I’m going to get bitten by mosquitoes. I should have put repellent on.  They love my exotic English blood and my suck-me skin. Do shopping, get detergent, time to check-out.  Cubby is missing a shoe.  He does this every time. 20 minutes later find shoe  Yes, it was under the trolley the whole time, why do you make me say it? We leave.  Temp up to 87F.  Good, we’ll be home in time for him to take a proper nap in his bed. Cubby falls asleep in the car, wakes up when we return home.

Make lunch for us both and eat.  No time to clean up.  Drive 25 minutes to school for Pudding.  91F.  Head straight to speech therapy session, driving another 25 minutes through ritziest neighbourhoods.  I want to live in a mansion like this.  I want to be stinking rich.  What do they do, these people, to get so rich? Arrive 20 minutes early.  Wait in car with a/c on.  Temperature gauge now reads 95F.  Cubby is asleep.  Try to entertain Pudding, but she just asks to get out the entire time.  Can’t get out without waking him up.  He needs his sleep, never gets a proper nap, my fault.  Oh, hello Guilt, my old friend, how are you?  Why must she keep asking to get out after I said no?  She doesn’t understand, so I have to be Understanding.  Be Patient.

Time to go in.  Leave her there and return to car.  Cubby wakes up.  It is hot, temperature gauge up to 97F.  Drive to get a drink.  Cubby enjoys being free of the car seat.  After 10 minutes, time to collect her.  He screams at being out back in the car, now 97F.  Guilt, Guilt, Guilt. Pudding has had a good session, lots of talking, great social interaction. Thank goodness, it makes this drive in the heat worth it.  She tries so hard, it must be hard after a morning at school.  Must be Empathetic, remember to be Patient. Get back in the car, 98F.

Driving on highway, Pudding speaks: “I want to go potty”.  Still 15 minutes from home, she can’t hold it.  Cubby whining.  Come off highway, drive to a strip mall.  “I want to go potty.  I want to go potty.” Over and over.  I know, I get it, I’m trying!  Why are there so few parking spaces?  This is America, everybody drives everywhere, make more parking spaces! Find parking space.  Enter fast food restaurant, head to bathroom.  There is a queue, 3 women in front of us.  There is a hand dryer.  The low-frequency sound drives Pudding insane.  Cubby is squirming to get down.

Pudding: I want to go potty, I want a hug.  Want mummy to hug.

Me: I know honey, I’m sorry- we have to wait, these ladies are in front of us.  Please, for the love of God, women, let us go in front of you.

Nobody lets us go in front.  Someone comes out, washes their hands, uses hand dryer.  Pudding squeals, women turn and look disapprovingly.

Me: I know sweetheart, that sound really hurts your ears, I know, I’m sorry. 

Can one of you please have a little empathy?  I know she looks like she is older than she is, like she should be able to hold it.  I know you don’t get that a hand dryer and flickering florescent lights drive her crazy.  You don’t have to get it, you don’t have to live it, just let us go ahead of you and my screaming kids will be out of your way.

We wait our turn.  The next two ladies use the hand dryer too.  A plague on both your houses.  No, be Understanding.  They can’t tell just by looking at her, I should be brave and tell them she has autism.  Yeah, well, I would if  I wasn’t trying to control a wailing girl, and a toddler hell-bent on touching every filthy surface in here.  Today isn’t about raising awareness, it is about just getting through an ordinary day.

We leave.  A big, black SUV is stalking our parking space.  I shake my head at the driver, he doesn’t move.  There is no way we’ll be out of here quickly dude, just move on. Put Cubby in first, he screams.    I don’t want to put you in either baby, I know.  Just lets get home, please. Black SUV still waiting.  Look at the Autism Awareness magnet.  Look at the exhausted mother with the two little kids, look and be Patient, and Understanding, I implore you. I try to soothe Cubby, while keeping a grip on Pudding’s hand lest she runs off.  Black SUV beeps his horn, Pudding screams and falls to the ground.  She was already on the brink, but the too loud noise from the too close car sends her over.  She is shaking, her heart pounding.  I want to hit you.  I want to hurt you like you just hurt my baby.  I want to smash the windows on your car.  I want to scream and swear, and I can’t make a sound apart from to comfort her, anything else would just make it worse. Cubby is crying, Pudding is crying.  I pull her into the front seat and rock her.  I’m going to sit here as long as it takes, this car isn’t going anywhere.  Black SUV rolls down his window to yell ‘Bitch’ at me before driving off.  Pudding calms down.  I put her in the car and we drive home.  Temperature gauge hits 100F.  I’m done.

I can’t change Pudding.  She has a neurological difference that can’t be altered.  I wouldn’t change her if I could, I’d just make this world easier on her.  I need other people to change instead.  I need the women in the bathroom to change, I need the man in the black SUV to change.  I need them to be Patient and Understanding and Empathetic.  I don’t need you to feel Guilt, I’ve got that covered. You’re here, you’re doing your bit.  But can you just tell those people for me?  Because I’m done, for today.

Written by Spectrummy Mummy

August 11, 2010 at 1:00 am