17 April 2006

Sunday Confessions on a Monday

1. I’m always late. I do my best not to be like this, but … So my Sunday confession is on a Monday.

2. I do many things in a shoddy half hearted way. I do my best not to be like this, but … So the hot cross buns this year were hot even-tempered buns. I just wanted them in the oven and out again so I could eat three in a row for lunch. Hence, no crosses. (They’re only flour and water anyway so they don’t exactly add to the taste).

3. There are still three tiny eggs that the children didn’t find during the hunt. I’m not telling them. They will be my morning tea tomorrow when they’re all safely at school.

4. Wanting to slap Son #2 when he told #3 in a fit of pique that it’s actually Mum who hides the eggs, not the Easter Bunny.

5. Not realising that listening to Watership Down in the car to school and back all last week was perhaps a trifle insensitive in the lead up to Easter. Also insensitive: giggling at the look on Son #3’s face yesterday when he was about to bite the ears off his chocolate bunny and Son #1 said in an evil whisper Yours looks just like Hazel, don't you think?

6. I finished The Curious Incident of the Dog in the Night-time this morning. You know, the one about/written by the boy with Aspergers. It touched me and made me feel really guilty for being so grateful, so very grateful that Son #1 doesn’t have Aspergers. Cos heaven knows I worry about him enough, and he grew out of all those Aspergers tendencies a couple of years ago. And my confession is that I just wasn’t a great parent to him when he was younger. From very early on we knew he was different, but you tend to be dismissed when it’s your firstborn and people assume you’re being just another ignorant first-time parent. But he never cuddled or snuggled, arched away when you touched him, and freaked out when his routine was interrupted. Then as he got older he became obsessed with things. Like, really obsessed. Not like other children whose mothers said ‘oh yes my little girl is obsessed with pink!’. No, he was OBSESSED with red. He lived, ate, breathed and totally immersed himself in red. For months. A year or so later it was space, then geology/rocks/minerals, and then, bizarrely, french horns for eight and a half months followed by violins for nineteen days. Other parents thought it was sweet and interesting, which it kind of was, but it was also spooky. Then he developed tics, which could be verbal or physical. And which made him look like a freak. And teachers/shopkeepers/strangers in elevators would take me aside and suggest I seek help. Each tic would last a few weeks before being replaced by another mind-alteringly annoying/embarrassing tic, and sometimes two tics would overlap for a few days. Plus there were odd neurotic fears and dislikes that didn’t make sense [to people who weren’t Son #1]. By this time we had had Son #2 who is quite a conventional personality and so this merely threw #1’s weird behaviour into relief. And so I did a bit of internet symptom-investigation which is always a dangerous thing (ie. at the moment I have a painful lump under my left armpit. Try Googling that and not hyperventilating at the results) and it came to pass that I discovered all sorts of things like Aspergers, Multiple Tic Syndrome, Transient Tic Syndrome, Tourettes, ADHD etc etc, many of which are linked and there is kind of a sliding scale of severity. And lo it was terribly scary and saddening but oh my giddy aunt everything fell into place and I learnt about triggers and I also stopped hating his behaviour and hating myself and thinking I had made my child this way. I also learnt that without Aspergers Syndrome and other high functioning autism the world would be without the majority of its computer programmers, engineers and astronauts. Not to mention mathematicians. Son #1 is as hopeless at maths as I am so I knew there was no chance he would become a Rain Man or anything.

But having a reason was so helpful. My rage and sadness eased. Naturopathics and homeopathics helped with the triggers and also some of the tics and symptoms. And life went on and we all learnt to live with Son #1’s "funnies".

But then something happened. He turned nine and reached a sort of crossing. The tics gradually lessened to the point where he now gets them only when he’s extremely tired or stressed (Triggers Number One and Two), the obsessions mellowed into Healthy Interests, and most miraculous of all, he became a cuddly affectionate child who is generous, thoughtful, and loving toward others. The odd behaviours segued into more socially acceptable eccentricities, and I stopped being embarrassed by him every time we were in the presence of others. And then, THEN, [and I will never stop thanking the gods above for this], he found music. Yes, it was an obsession for a long while; he lived, breathed, ate, thought music all day long. But with the discovery of music, he found himself. He learnt to interact with other people more easily through the language of music. He found an outlet for all his frustrations and difficulties. He discovered his place in the world.

And my confession(s)? Guilt for feeling so grateful that he (mostly) grew out of all those syndrome-y symptoms. Guilt for not being a better parent to him when he was at the outer edge of the ‘normal’ spectrum. Guilt for all those years of wanting him to be firmly within that ‘normal’ circle. Guilt for not finding the courage to accept him for who he was but always pushing him to be what I wanted him to be. Guilt for finding him so much easier to love these days.


sueeeus said...

Goose bumps of joy for #1's discovery of himself in music. Beautiful! You've been a great mother all along.

Miss Eagle said...

This is a beautiful heart-warming story which I'm sure will encourage and comfort other parents. I am sure you are at this space and stage through good parenting. I am also reminded of a verse in my mother's girlhood autograph book: "Everyone is queer 'cept me and thee - and sometimes I wonder about thee."

herhimnbryn said...

Here I am a stranger in blogsphere, no children of my own, but a devoted Aunt to 8 nieces and nephews..........one nephew went through your son's experiences and like him has found his place in the world.
Thankyou for such an eloquent post and for opening yr heart.
Your son must be proud to have a Mum like you.

shellyC said...

Thank you Suse for your wonderful post. So glad your Son has found music. And you a bad parent.....I most surely think NOT!!

Kim said...

Uughhh. Amazing. this is one of "those" posts that just sits in your heart for days if not weeks and months on end. Thank you.

blackbird said...

gosh -
That's huge.
And wonderful.

First children are all interesting.
I am always surprised at how detatched I can be from mine. How easy it is for me to blame myself, question myself and distance myself.
From the start they are born their own people - we can do little but filter the world for them, sometimes I think we forget that.

Kim said...

that underarm pain? Is there a lump? I used to get it every month with my period. Mine was a gland thing. Your mentioning of it reminded me of it - and that I haven't had it for ages, in fact, maybe since having Felix? Weird huh.

BabelBabe said...

Oh Suse, I am sure you were NOT a bad mother. You are way too hard on yourself, like you seem to be about many other things.
You put into words so many feelings and thoughts I have about Primo. Thank you for sharing your experiences.

Anonymous said...

Many people have told me how wonderful 'Curious incident....' is. Funny thing is, none of their children have had Asperger's Syndrome. My #1 son does. I got about halfway through it and could not read it anymore. That was about 2 years ago. I guess I will get back to it again, but right now I am dealing with the present -a wonderful 8 year old who is constantly suprising me. Sometimes I am frightened about what the future holds for him, and us.

MsCellania said...

Suse, your post gave me the strength to post our story (well, a bit of it). Thank you!
As a parent who is skirting diagnosis (son is not quite 5 and has so far defied diagnosis by All Who Diagnose, which 'they' say is a Good Thing) I live in fear and wonder of our world. "Who will show up today in his body? Will it be the good twin or the evil twin?" Most days I realize it is his reactions to me or what's in front of him, and I am more tolerant. Other days I realize that life is all about adjusting; what will become of a boy who either refuses to adjust or takes too long?
And I cling to stories of different children who have lived good lives and even made a difference in their worlds. And mostly, yes; I cling to that hope.
May God keep us kindly, Suse. And may we be kind and gentle to ourselves. We are just 2 women, trying to be good parents, who love all our children very much.

capello said...

My oldest son (who is four) has Sensory Integration Disorder (which many who have Aspergers also have). And it can be quite difficult dealing with him at times.

We've also been told that most likely he is high-funcitoning autistic, which is hard to grasp. He is so delayed in the ways he interacts with people and his control over his body, but he makes these observations which Blow Our Minds.

It's nice to hear the "other side," that as he gets older it can get easier (we're already seeing some of that).

christina said...

This was an amazing post to read--what a process. You wrote with such honesty and rawness--which almost surprised me, juxtaposed by the gorgeous easter eggs hanging serenely on on the tree below, and, what I imagine to be the endless craftiness and peace that flows out of your house :) (Chuckle. Isn't it funny how we percieve things?)

Anyway, reading this was wonderfully healing in a way--what a full circle process... and I'm so amazed by his discovery of himself through music. How wonderful!

And...you are--and were--an incredible mother, even when you didn't feel like you were. The evidence is aplenty!!

Bec of the Ladies Lounge said...

Did you see the article in the Good Weekend (I think you get that with The Age, same as our SMH?) recently about the lead singer of The Vines? Undiagnosed Aspergers until he was in his 20s - when finally someone got to the bottom of the musical genius/social disaster mixture.

A guilt, you know, is the ticket you have to show to ride the parenting train.

jorth said...

Once again, your honesty has floored me. I am positive that you are a wonderful parent who carried a very heavy cross for a long time. You should be proud of yourself!

Joke said...

As the dad of a 7 y.o. with mild-to-moderate autism, it was inetersting to read this...I was cheering for you as the narrative progressed.

The guilt thing, though, is something which (in general, also) escapes me. Not that this will do much, but don't feel guilty.

As Numbah Two Son continues to progress and get closer to "high functioning" it is easier to love him, but that doesn't mean I love him MORE. It just means less distance is needed for me to travel. No guilt required there.

As I see many of his classmates whose rates of progress are not what NTS's are, I don't feel guilty. But I feel an overwhelming need and want to pray for them; where these parents are, we just left...and we know that terrain well, it is cold and hard and unforgiving.

So, don't feel guilty. In these cases nothing good happens without good parenting. Our self-view notwisthstanding.


lisette said...

hugs to you all. i'm afraid i don't feel more than an occasional twinge of guilt for loathing my mildly asperger's brother :( but it has always been used as an excuse for any sort of outrageous behaviour.... you are not a bad mother - who among has not ever wished their children away just for ten minutes (or more!) i think i may be sister

lisette said...

hmm young 'helper' managed to delete the word "bad' from my comment - i do feel like a bad sister

Lazy cow said...

Thank you for such an honest, heartfelt post. We need to let go of the guilt as parents. Nothing that you've said has convinced me that you are a bad mother.

dani said...

this is a really amazing post. thank you for sharing all of that. it's time to stop feeling guilty. you did your best. your motivations for seeking help weren't bad. son no 1 certainly does his best and thank god he found music. but i understand how you feel that when someone doesn't fit into the norm it makes you doubt their worth. the funny thing is, the ones that fall outside the norm are by far the most interesting people of all.

doubleknot said...

Thank you for your post. My son will be twentyeight this year - when he was young little was known about autuism but I knew something was wrong so I studied everything I could lay my hands on and tried to talk to the doctors but they all told me my son was just mentally retarded. When he was a baby I held him for hours while he cried till he got used to my touch. When he was three we spent one summer in a little swimming pool in the back yard and like Helen Keller I tried to teach him the conection between the word water and water - you should have seen his face when he understood. So there was hope. Guilt - my did I have guilt. I can no longer care for my son but he is in a special place that gives him a job to work at - which he loves and people around him that understand his actions. I miss him. I have come to accept that I will never get the responses from him that 'normal' children give their parents and just love him for hisself.

carolyn said...

This gives me hope: thank you!

My float said...

I really loved reading this post.

It's interesting that the word 'guilt' comes up time and again in all the blogs I read regularly, whether or not their child has special needs. I think Bec's right - guilt is the ticket to parenting. I think we do the best we can under our individual circumstances.

Robin said...

I listened to that book on audiotape, and the guy that read it really MADE the story...he sounded as detached and distant as you would imagine a child with Asperger's would feel. #1s story made me tear up a bit, thanks for sharing it. I'm here from Michele's...you sound like a wonderful mother, and I'm sure that you are.

Anonymous said...

I hope you're not joking about the painful lump under the armpit. Please get it seen at once.