one small bite of the cookie

First published January 2008
Updated to include the thought - Bratty is TEN next week!!!

Two good friends have asked me the same question recently;

"What are you going to do with Bratty, when she grows up?

This is because Bratty is the more severe of my two children and at the moment, the more challenging. But it was also because these friends both have girls, who are growing up.

Girls, because of their biology, approach puberty sooner and in a more obvious way. So as a mother of a girl, you have to take on another level of self care and self management. Something new to cope with.

Boys are a bit easier! Okay, they get a bit tackle happy but that happens with typical boys too, and I have to say, from the age of about 3 months (when they can find it) until, at the last check; 45 years (and counting) that doesn't change.
All that changes is where and when they decide to play pocket billiards, a simple case of "choose your environment." Or in my brother-in-law's words; "there are some things that is okay to do alone in your room; but not in front of other people".

But for girls there is a very obvious change in body shape quite early, followed by the other signs of puberty and then a monthly visitor.
Sorry guys if this offends you but when a little girl becomes a woman, it is very obvious.

My reaction the first time I heard a special needs assistant in the change rooms at the swimming pool, loudly directing a female pupil to attend to herself during her period was: "Ahhhh!!!!" and then I went and had a cry in the car.
I decided then and there that my daughter who was 4 or 5 at the time, was going to be "cured" of autism by the time she reached puberty. And I could hand over a bumper pack of surfies* with an expression of distaste (as my mother had done) and then forget about it.
(*surfies are large cheap sanitary towels, so named because of their resemblance to, in comfort and appearance; surfboards)

Fast forward 3 years and as Bratty is approaching her first communion, some of my friend's girls have reached 6th class, confirmation and are awaiting the arrival of their first period.
Again I actually put my hands over my ears and said, "lalala la!" when asked how I was going to manage this change with The Brat.
And I still feel that way.
Sorry, but this is not going to be an informative piece about dealing with puberty in adolescents with autism. I have not been there yet and have nothing practical to offer.

And I have no intention of researching the subject at this point, either.

Nope, this is about taking one small bite of the cookie at a time.
In other words, only facing up to and preparing for each issue, as and when it arrives.

There is a popular allegory about having a child with special needs called
"Welcome to Holland".
It is very nice to read when you first get your diagnosis as it is comforting and explanatory at the same time.
You know you are having a baby, you get your baby books and you talk to your maternal friends and family and you begin to plan and envisage yourself as a mother.

The comparison is planning a trip to Italy.

Then when you do give birth and the child turns out to have special needs, the comparison is that the pilot has landed the plane and announced "Welcome to Holland", enjoy your stay.

So, instead of Pasta and Chianti, Da Vinci, Michelangelo, The Leaning Tower of Pisa, Versace, Gucci, Prada and Armani,
You have Edam and Gouda, Heineken, Van Gogh, Windmills and - Clogs.

So you read up on Van Gogh, get to like Heineken and Edam and Gouda. You find out about Amsterdam, coffee shops and the rest of it. It isn't so bad.

The analogy breaks down with autism when you realise that the plane actually lands in Italy and you are there for a while, enjoying the spaghetti and gondolas, sometimes wandering past a windmill and ignoring it until someone hits you in the face with a block of Edam and says "Hey! Welcome to Holland" (everyone speaks English in Holland)
"Oh shit you say, is that where I am? Well feck this I am going back to my hotel until I know a bit more about this!"

You emerge weeks later, eyes blotchy with tears, armed with a guide book and start trying to make sense of the place.

But nobody tells you that you are actually going to have to live in Holland. Forever.

Now I have a theory on why diagnosis often seems to affect Dads more than Mums, at least to begin with.
Mums when they are pregnant can feel a little person growing gradually inside them. They are conscious of the presence of hormones that make them feel sick for the first few months, they are protective of the growing foetus by not drinking too much, and avoiding smokey environments and crowds where their bump might get well, bumped. And they pay dearly when they eat the wrong things and get reflux or constipation or a night of dancing legs and head butts.

Dads for some reason do not experience the anticipation of having a baby.
What they seem to be imagining is someone to play football with, to applaud at their graduation or to walk up the aisle.
Dads have an expectation of the person the baby is going to be. While Mums see a baby to be nurtured and enjoyed at whatever stage they are at.
For my own part when I had Boo, my first born; I remember being totally focused on whatever stage he was at. When I was waiting in a Doctor's waiting room for a six week check I remember thinking that every newborn was absolutely gorgeous, but none more than Boo (he was objectively speaking: exquisite.) And looking at older, fatter babies and toddlers and thinking: Ugh!
Then when Boo was 6 months and filling up like a German sausage, I took him for his jabs and he was so fat he could not feel them!. Well then I thought all the older babies were cute, but those newborns; yew! They looked too vulnerable and tiny to be attractive.
As a mother I was totally prejudiced to love my own child and the stage he was at. (but even strangers stopped us in shops to tell me how beautiful he was) and that is how nature intends it.

So, that is how I view my own kid's development today. If, as many Dads do; I was to stand back and take a big picture look at the whole thing. Well I think I would just crawl back into bed with a bottle of whiskey and never come out.
But if I just allow myself the small, short term view of the picture I can do it.

If you were to set out in front of me one of those Super Duper American Coffee House "Home made" Cookies to eat in one go. I couldn't do it.
But if you offer me one little bite at a time, I can munch away and work out how to deal with it, swallow and THEN move on to the next bit.

Autism?, okay I can deal with that. Both kids have autism? Okayyy, yep, I can get on with that. Attention Deficit? Okay that makes sense now; how can I get on with dealing with that? Right, will do.
but don't go and throw the whole platter down in front of me straight away.

And the truth is that I might not have to deal with it at all. The situation may just resolve itself before it reaches me. Or I may have developed the skills to cope with it in the meantime and it will be water off a ducks back when it happens.

I can cope with Windmills and clogs and coffee shops. I have learned to like Van Gogh. I really like the way the scourge of Dutch colonialism has resulted in a multi-cultural society in Holland, and the resulting range of EXCELLENT cheap ethnic restaurants. I have learned to navigate the place and no longer get lost as often. I can even help others with directions on the best way to get around.

I am coping. Today.
Just don't tell me I am going to have to live in Holland. Forever.
Sure there are aspects of our lives that will always be a bit dutch. But I live in hope that eventually me AND my kids will be able to go off and maybe visit Italy, or Spain, or The Americas or Asia, and enjoy it whenever we want to.

And when I am gone, they can do it alone. Choosing to come and go from Holland as they please, on their own terms without needing a guide.

And that is all any parent can want.

For Charlie, with love.


Anonymous said…
I know you dont have all the answers and never will but you are a huge inspiration.
Its like you are answering my questions and worries and alot of the time living my family life.
As i watched my ds the other night it was like his ASD hit me like a truck for the first time and I sobbed. As you say, you expect them to wake up one morning and your home, (or in Italy)
But it hit me with a wack.
Only thanks to my family and the knowledge that il do whatever it takes to give him the best life possible kept me going.
You probably have no idea how many smiles you've put on peoples faces and your children are lucky to have such a wonderful mother. I only hope I can be as admirable as you.
Lisamaree said…
Thankyou anonymous. As a mum at home writing the blog has been a way of self counselling and trying to make sense of what life has offered up. So it means a great deal to hear feedback such as yours.
Many thanks and good luck on your journey.
Don't forget to give yourself time to grieve, Its Okay.
Anonymous said…

Hammie, speaking as someone coming from the Down Syndrome side of things, I really liked your piece - the mother/father side of things was really well observed from my experience. You described pretty well the first six months of DS's life in my house, with me getting through from day to day (and sometimes from hour to hour in the first few weeks), knowing that if I looked too far down the road that is Kevin's life I would crack up, while I think poor DP had no option in his head but to see it all mapped out on front of him and thereby fell apart - focussing all his attention on DS's 1 and 2 during the day, incapable of looking at DS3 with anything other than pity and collapsing in depressed silence at night (and yes, the whiskey bottle made a semi regular appearance for a while!). But it got better. I can look further down the road now than I could before and DP can treat his youngest son the same way he treats the other two. Basically I learned to look ahead a bit without getting too scared and DP learned to take each day as it comes a little bit more.
Anonymous said…
Hammie great piece. Nobody unless they're God can deal with the whole plate when its put in front of them. There are so many angles to deal with in the life of a child with autism, the assessments, schools, blah, blah blah, that's before we even deal with our own feelings which in my case used to change by the hour never mind by the day. Finally, (and its been a while coming) I have learned to live in "the now". I try to keep on top of things and keep well informed but there was a time at the beginning when I was so overwhelmed by it all I was like a headless chicken running in all different direction but actually achieving nothing. Things change all the time. Of course it is natural to think of what the future will hold with a certain amount of fear but I really try to think many positive things are ahead as well. I like to think how much my ds has achieved, when I think of the nightmare of teeth brushing that one day resolved itself. there were so many other issues that caused me many a sleepless night that are no longer present. Oh im not fooling myself, my boy will always be a bit Dutch and sometimes even from a country that I know nothing about, but I can learn, he can teach me. And like, clogs and Ruud Gullitt who I was a little bit in love with during the World cup 1990, there's a lot to be said for Holland. x
Anonymous said…

Gee, thanks Hammie made me cry again!!! Well written and SO true. The nights where I break down and sob are the nights I think oh god what will he do when Im dead, will he cope? How will he get on when he goes to mainstream in Sept? Will he be bullied? Its like a really twisted version of the song - Que Sera, Sera !!!
But like, you say when I think of the here and now I am not half as demented with grief and worry and disappointment and angst and anger and...... no Im not really that bad anymore its been nearly two years since diagnosis but I did really go through all of these feelings. Im sort of at acceptance street now and it does feel a whole lot better. Saying that, acceptance doesnt mean I accept everything has to be crap or that he cant have a really happy full life - it just means I have accepted he is a wee bit limited and needs us a bit more than his little sis does (in some ways), but more so Ive accepted Im extremely lucky to have this funny, loving, conniving little ray of sunshine in our lives.

Thanks for the post/ blog its so great to know that there are other mothers feeling the same!

Anonymous said…
Love that piece, hammie! It's spot on as usual. Keep it up - I know I'm not the only one who looks forward to your new musings. It really is one step at a time, rejoicing in each new achievement and often tearing our hair out when we have "autistic days". I used to be one of those people who run ahead to worry about things that may or may not happen, but i've learnt theat no-one benefits from that, least of all ds. Suddenly I find myself with a gangly, skinny 6 yr old and I wonder where my little baby has gone, but if you'd told me that we'd have such a happy, calm (most of the time) non-aggressive, sleeping through the night child, I would never have believed you. The biggest lesson I've learnt is that everything changes - maybe not as quickly as we'd like, but it changes nonetheless.
Anonymous said…
Hey Hammie & all,

Excellent piece as usual. I have to say I am a "stuff the whole cookie in your mouth" sort a gal, ie a worrier. I look at both my kids (one ASD one non ASD but as high maintenance!) and can't help wondering about their futures. What sort of schooling will they have? What path will they take for careers/ partners etc? Will my little man ever have a partner? Am I doing the best I can for them etc? (and the list could go on.)

I guess I try to listen & learn along the way and have to agree (with Taz who said this I think), that changes inevitably happen. I caught myself looking at the 2 of them tonight - actually dancing together in the kitchen (a first.) I couldn't believe it.

Keep the faith.
Anonymous said…
Hi Hammie,
I really really liked that piece you wrote. I liked the way you adapted the Italy/Holland analogy to autism. It's so spot on! Also, it's so true - if you were to keep thinking of what's up ahead, you would crack up. And it's the days when I try to think about the future that tend to be my worst days. I don't really have any new tips to give on how to cope with all the challenges we have to face, as I'm still only starting off and learning ways to cope. All I can say is that reading articles such as these and checking into RC every now and then are things that help to keep me focussed on the here and now. I guess my other survival tactic is to rejoice in all my little boy's minor achievements (the things my older child did without me even noticing it at the time ). Anyhow, good on you for writing such a good article. Laurie
Anonymous said…
you write from the heart and make such sense.
we were talking at work the other day, one of the girls has an ASD boy in 5th class and she was talking about the pre-puberty signs she sees in her ds and how she was going to handle it. i am going to refer her to your blog and especially your "cookie" post as i think it will really help her.
Miss Piggy said…
thanks for cheering me up, I am trying to deal with the same situation at the moment but was feeling rather disheartened until I read your piece.