the highest degree one can earn

Some of you may have noticed that I have "tagged" (such a cool street term) a new blog called Autism Vox:

I am enjoying it not just because it throws up thought provoking observations on autism; but because it is written by a Mother of a child with autism, Kristina Chew; who is also a PhD.

Ahh, so she must have the "cure" right?

NO! She doesn't and she is fair dinkum about it too.

She just struggles through all the normal things that we do. Like clipping toenails, eating from a plate, crossing the road, and all the incredible challenges those simple issues raise. And she does it with nothing more than her love and good judgement, and common sense.

The fact that she has the letters after her name give her good press recognition and she is often asked to comment in the national media in the U.S.A. when an issue specific to autism arises.

But she does it as a parent. In a way that we can all relate to. She does not set herself above the feelings and fears of all parents; but because she has the qualifications they have to listen to her.

And I find it all so reassuring.

You know that constant nagging feeling that you are not doing enough?
A bit like during exams when it seems that everyone else is studying more than you and talking about it. When you feel you should do more but simply do not have the energy. I'll cram tomorrow, now where is the couch, the remote, ahhhh.......

That is how it feels to be an autism parent. We all know that the condition is treatable and manageable. Some people think it is curable.

So as a parent you always feel a bit inadequate.
I should be doing the diet, I should be doing the deep pressure exercises. I should have visual schedules in every room. I should have a therapy room. I should be doing sound therapy, vitamin therapy, Bio meds. Swimming with Fungie the Dolphin.

Or even worse:
I Should Not have worked during pregnancy, I Should Not have gotten them Immunised, I Should Not have had that One Small Glass of Riesling at 36 weeks, or taken a panadol. Or eaten my own weight in Doughnuts. I Should have had my fillings removed. Coulda, Woulda Shoulda.

That is why I like Autism Vox; because it references a lot of the quack cures (and "causes") and refutes them. Factually, with evidence. And a P.h.D.

So us muddled and befuddled non P.h.D's can feel reassured and a bit more confident of our own ability.

Until another swot of a parent comes along who says they "cured" their child with X and you feel all inadequate again.

But then I just click back on Kristina and let the smooth waves of the highest degree possible combined with "this worked, this didn't, I messed this bit up", Acceptance level parenting and she sets me straight.

Which makes me think of an event earlier this week.
Mr Hammie and I were called in for an "exit interview" with the kid's previous service provider as they were handing over to the outreach team that supports the ABA school.

We actually dressed up for the meeting and then sat at the round table basking in the golden glow of how well Boo and Bratty are doing since they moved to full time managed ABA.

And how wonderful our quality of life is now we can just be parents again.
That there was no more home schooling, no more being the bad guy of behaviour management. NO more whingeing and bitching and being angry all the time.

Every aspect of our kids development was now being accurately assessed and managed with functional goals. We now have such hope for the future, we can consider a life outside of our kids needs; and maybe look at our own personal development.

Everybody at the table was happy for us. Curious as to how things were working but happy and let's face it; they had two less kids on their completely over booked client list to worry about. So they were happy for themselves too.

But one of the senior therapists just didn't get it. She kept trying to bring the conversation round to a new visual maths program we could try at home with Boo and Bratty. We were supposed to be finished and Mr Hammie was out the door,
(off to an important appointment: Lunch with Me!)
I had my fabulous Ralph Trench on, my gorgeous (second hand) Juicy handbag on my shoulder and was picking up my Miffy umbrella, and this gal was still drawing number boxes.

So I sat down and spelt it out: "No, I am not interested in Teaching At Home Anymore". But I promised to mention it to ABA school Director with a view to Boo's curriculum, next year.
Ah but this would be good for Bratty too, she insisted.

Our priority for Bratty at age 8; is all about improving communication, reducing anxiety and frustration, and stopping the screaming tantrums that made our next door neighbors put their house up for sale. (and tell us why!)

So I had to give it to her. "What is the function of Bratty learning to count and add numbers; when....(after 6 years in your service).... she cannot even say her own name?"

And with that we were free to go for noodles.

Now, don't think I was being a bitch. I drew a functional diagram in every parent report form I had filled out for the last 2 years. It is just that my opinion didn't rate.

Senior Psychologists in the Autism Services are often called upon to "explain autism" to Teaching Unions and colleges, Med' students and national schools. Because they have the appropriate qualifications.

But I am just a mum.



Sister Wolf said…
Kristina will always write back to you, too!

I wish I were magic and I could persuade you to not blame yourself or any behavior for the fact that the kids are wired this way. I believe absolutely that it is genetic.

Your kids are young, and you still don't know what their particular gifts may be. But I think this will emerge.

Neurotypical kids are overrated.
ATenorio said…
Good for you! I cant tell you how many meetings I have sat through where some blowhard makes inappropriate, unhelpful, or just plain stupid suggestions for someone's child. I wish more parents would speak freely as you did!

I would say Boo and Bratty are lucky to have you!
Lisamaree said…
Pearl, Blowhard is my new nickname for this senior clinical psychologist. And I didnt write it in the blog but she is the one addressing the College of Surgeons and Teaching unions. Gasp.

Sis, I agree with you, but I always have my days. And I can see how gifted my kids are in their own way. Boo can type like the clappers and memorise a lot of stuff (ref: Boo's Blog) and I had the best morning with Bratty.
(Brag coming) I have been playing with MS paint on her laptop, drawing outlines of bloated teletubbies and getting her to request eyes, mouth etc and the shape of the antenna. She can do the color fills and it was a nice little game to play together. She really loves those tubbies.

Today she copied her brother, leading me over to the press to get out markers and A4 paper. "Drawing with Mummy" Boo calls it.
Then Bratty sat me down at the table and said "Po!" I drew the outlines and started prompting her to get the next marker to do the tele tummy, the eyes And then it happened...
She picked up the marker herself and drew two little eyes and a mouth. I am tearing up now thinking about how it felt to look at that little crooked line mouth. Then the ears came, the tummy, a scooter for Po, and a flower. All in the style I use on Mspaint, but this time on a peice of paper.

And she was soooo pleased with herself!

Good days.

Thanks again for your understanding Sis!
Elizabeth said…
My mother drank, smoked, and did other assorted things when she had all of us (bro, sis, me) in the womb in the '60s. She passed on some tidbits, but we all came out in one piece. I'm amazed about that, considering what she had to deal with.

I doubt any parent feels entirely good about every single factor involved in how s/he handled the pregnancy, infancy, toddlerhood, childhood, adolescence, puberty, teenage-hood, etc. in their child's/children's lives.

How can they?

Nobody's perfect.

If you do the things that you believe are important, if you live by your own set of values, then you can live with yourself, your actions, and let go of the results. There's so much you can't control. And that's okay. One thing you can control: Your children will grow up in a loving, engaged, nurturing home.

So many parents check out, are not emotionally available, and live in the dark.

You are not that.
Gracie:) said…
Coulda, Woulda, Shouda, sounds like a eurovision entry ;)

Oddly enough im having a What if,If only day, or at least I was till I read this.

I need to cop on and set myself some realistic goals and go read Autism Vox.

Hows that Book coming along? eh!eh!

Lisamaree said…
enc. thankyou. Your raw honesty is so appreciated. I try to stay in the light but I was raised to blame myself and it pulls at me.
Mammy, I promise I didnt study either!. It doesn't usually help that it is a spectrum and we all started at different points; but when you feel insecure you have to remind yourself THEIR KID IS DIFFERENT!
And you are fab. check out enc and Sis and Super Kawaii too.
Nick McGivney said…
Chutzpah and cojones. A little Yiddish, a little Spanish. I think you've got your own balance fairly right, and you know what we say around here about the begrudgers.
Lisamaree said…
Chutzpah and Cojones? Isnt that a Tapas bar in the jewish quarter of Malaga?
Te said…
Hello, I'm glad you commented on my blog because it has lead me to yours.

I'm nowhere near qualified to offer advice or insights such as the mother of an autistic child could. I have worked with severly autistic children and adults in the UK, there I met a close friend who has also worked for a school in England for autistic children which aims to help the kids reach the highest possible level of independence. Her finacee has done austism research for Oxford and now for a uni in Sydney. I guess the point I'm trying to get to is that in the last few years I have learnt alot about autism, to which I was previously very ignorant, and I am happy your blog exists to educate and make insights. phew, that was an epic.
Style On Track said…
Wow this is VERY fascinating, I have an uncle with autism so I am very eager to start reading this blog, thank you for sharing all this wonderful information :)
Lisamaree said…
Hiya Te and Track; Welcome.
I am beginning to think that autism is the new black, soon everyone will know someone. I hope that is because of correct diagnosis and that is saves famiiies a lot of weirdness and worries. Track, would be fascinated to hear more about your Uncle; do you see him much?
And Te, I love that you came to London and did something so useful! I came to London in 1987 and was just a Nanny/barmaid/dental nurse, all such aussie cliches! I did pick up Mr Hammie while I was pouring pints.....