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Monday, March 05, 2007

Early days 3

After the boys had been diagnosed with autism, together with their respective speech delays, I looked forward to the commencement of ‘therapy’ in it’s many and various forms. I went along armed with a notebook and pen, to sit in on the sessions so that I could learn what they were doing and how, so that I could reinforce everything at home. I was also secretly hoping that I would find all their magic tricks. I would learn what I was doing wrong. I would learn whatever it was that I should be doing and I would learn to do it better. I would do it better than anyone else, for longer than anyone else and I would make it work.

Although I had read everything I could lay my hands on but I had the distinct feeling that I was missing something, although I couldn’t quite put my finger on what it was.

From the time of their being diagnosed to the start of therapy I had coped well, or what I considered to be ‘well’ under the circumstances. I knew that the boys were autistic because I had done something wrong, although I wasn’t quite sure what that was either. I had determined, if not to ‘make amends,’ at least to adopt a positive stance to our change of circumstances. I had told the people who needed to be told. We ‘regrouped’ at home and intensified our learning. I put what I learned into practice in an amateur manner, confident that soon, experts would intervene to put us on the right track.

Therapy commenced, an intensive programme for both the boys, individually. I watched and waited. There are few things as frustrating for a parent as having to watch [and pay] for 50 minutes of speech therapy where your child refuses to utter a syllable. I waited to see what would happen, what was the magic key to force him to speak? Sometimes I could do it at home, sometimes I couldn’t but the difference between the two, were beyond me, a mystery. The experts would know. They would teach me, I would learn.

After a few of these sessions where the therapist debriefs the parent on conclusion, I asked what we should be doing at home. I was advised that homework would be very helpful. For that week we should perhaps go to the park. As he climbed up the ladder I should chant ‘up, up, up’ and ‘down, down, down’ on the other side. Additionally, a Nursery Rhyme [I forget which one now] would be of great benefit.

It was one of the few times that I burst into tears in front of a professional. The shock was profound, I was bereft. That was it? Did she think I had kept my son in a cardboard box under the stairs for the previous three and a half years? There were no magic tricks.

I turned away from my son so that he would not see me weep and attempted to compose myself, straighten my limp upper lip. If I’m honest, I don’t really know what I was expecting from the experts? I was so sure that I was missing something, that there was something else I should be doing or should stop doing, as if everybody else in the world ‘knew’ but that it was a secret that I was not party too.

I’d like to tell you that he ran to my arms for a hug, to wipe away my tears and said “I love you mum,” something uplifting, funny or tender but I can’t tell a blatant lie.

I only had to wait another four years for him to say those words.


Club 166 said...

The secret is "There is no secret".

It's trying every day, doing the best you can, not seeing immediate results, and getting up and doing it all over again.

And hoping the whole house of cards doesn't fall apart in the meantime.

redheadmomma said...

I really liked this post. I'm sorry it took four long arduous years to hear the words you wanted so much - I am so glad that they finally came. I feel so much for the moms that never, ever hear those words.

AshleyLeo said...

Wow. what a moment in time. Thanks for sharing.

Anonymous said...

You are doing your best and there are those (us) that wish you the best in all those decisions that you have to make, all the tough times ahead. Thanks for this post; a great way for us to see the inside of you.

LAA and Family said...

Wow, what a revelation that must have been! It is natural to think of teaching autistic children within the same paradigm that we would teach other children. I'm continually reminded that every lesson has to be approached creatively, slowly, and patiently.

Sarah said...

How you talked about feeling like there was a “secret” that the professionals know, I feel that way a lot. We do the Occupational Therapy and Speech Therapy, and sometimes I feel like I am losing my mind and I think there has got to be SOME way that we can all learn to deal with eachother better. I think I am only beginning to get to know my son in some ways, and then I get myself mired in mommy guilt. Ah well. You made me feel good in some ways though, as even if we aren’t seeing a lot of progress now, maybe in a longer set of time we will have the progress we all hope for.

mjsuperfan said...

Much of this post sounds very familiar to me.

When I first started my research, all I read was "Early Intervention is vitally important.". So there you are, with the clock ticking, scrambling around for what to do!

We are still at the "up, up, up", "down, down, down" stage. I love reading about all the talking your boys do because it keeps me hopeful.

lisamoon said...

and from the classroom teacher perspective: just yesterday, i was working with one of my pre-schoolers who has autism doing the 'up up up, down down down' to his retort of 'this this this, this this this.' that's the word he uses for many things.

i was glad when we went 'on a walk' and he repeated something that sounded like 'stop' when i said 'stop.'

even us professionals don't have the secrets. my students are mysteries to me, too! and i am delightlyfully surprised and excited when language comes bubbling out of their mouths.

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