Sunday, August 26, 2007

The Deadline...

I remember, in a somewhat haze of the stupor of my early 20's, waxing eloquently with my friends about where we would be on January, 1 the new millennium. How OLD we would be, what we would be doing (and how we would all meet at the same local park on that night no matter what GAACK!).

I had another date that I looked 'forward' to recently, not with the same whimsical idealism, but with pressure and loathing: August 27, 2007, the day that Liv would turn 5. During our 'indoctrination' phase of the autism disorder three years ago, we had this idea of a ticking clock; this clock ticking off the time when she reached five years old and her brain would solidify. The time when it would no longer be possible to change who she was; that whatever point she was at with speech, socialization and attention would be how she WAS for the rest of her life.

This was one of the first things I remember when researching autism 'recovery', that whatever we were doing MUST be done early. God help those who wait. If you didn't start until 3 or 4 or God forbid 5, you'd be fighting with 2 strikes already against you. You better get your therapy going and you better cram it all in before 5, because the timer's ticking.

It was the finishing line, too. Where all the hard sprinting we had done for three years would show us that we had accomplished our goal. That Liv would be speaking, that the isolatory behavior would be gone, the social issues would be a thing of the past. We had this vision of a few months of really hard work with early intervention, then we would be richly rewarded for 'putting our heads down' and putting in the hours early in life. Then we would walk off and go back to a 'normal' life. Liv would be free of autism and we would be back to our neurotypical world.

I can't exactly pinpoint when and if it has stopped becoming a race. Our hope for a quick change back to speaking was definitely one of the first indications that this was going from a sprint to become a marathon. The more we read the more we realized that this 'cure' was a mirage, that there were many different types and degrees of autism and that Liv was not one of those that you would snap your fingers and she would talk, would stop stimming, would become 'normal' again.

We had visions of biomedical interventions being the panacea that would relieve us of the burden of having a lifelong struggle with autism. That magic pill turned out to be non-existent as well. Research has lead us to the conclusion that there are no easy answers as to causes OR cures. So everything we do now has turned from 'curing' her autism, to helping her deal with any discomforts and issues she may have.

By the time Grace was diagnosed some 18 months later, we were neck deep in autism already. We also had the child that we were 'prepared' when Liv was diagnosed; a child with less issues, more progress and better outcomes and expectations. But it was too late, we had changed already. We knew what to do, we did it, we had different expectations; I guess we hoped for the best but expected the worst.

But we still feel we have that pressure there to a certain point, but we have learned to ignore the clock somewhat. But that drive to do everything possible for her and not miss a beat is always driving us batty. Linda will try her best to manipulate the schedule to get every possible therapy into the day. She also devotes her 'free' time to researching and implementing various nutritional and suppliment regimens. All this within the confines of keeping our daughters happy and not overwhelmed. At some point, she/we will have to say when: emotionally, financially and physically. There is simply only so many hours in the day; so many dollars in the bank and so much tears and sweat that can be shed. We've run out of hours, we've run out of money, we've run out of expectations for miracles.

The reality is that autism will be with us for the rest of our lives. I've discovered that doesn't necessarily mean the end of our world or their world. There IS life after 5, and it can be as wonderful as we can make it. There will be challenges, and we certainly haven't given up on Liv or Grace, we have just adjusted our high expectations to something different. I'll not share them because I imagine that 3+ years from now they will change again. I just know that Liv has a long way to go; but she has strong legs to make the journey, she has a strong will and a strong mind to get her there. Grace, fugetaboutit, she's shown us the bridge between the two worlds, she'll be fine...

We're all in this for the long haul, the deadline is passing as I write this. I am a better person for it. Liv, well Liv is and will be who she is, I can only help her become...

Oh, Yea, Happy 5th Birthday Liv! Love, Daddy


Mom26children said...

Hi Bill,
How lucky you are to have your children and especially how lucky your children are to have you.

gettingthere said...

Happy belated birthday, Liv. There is indeed life after 5.

mcewen said...

I can't pin point when that moment happened either. Like you say, after the first diagnoses we were pretty much buried and knew that the next Rx was on the way.
It may not be more peaceful around here, but there's lots of peace of mind.
BEst wishes