A whole new world of hope

19 Apr

On Saturday morning I woke up full of anticipation.  Gerard, George and I were headed to York University to get the results of George’s latest assessment.  It had been a year since the previous assessment, and the results of that had left us feeling bereft and overwhelmed.  We did not need this latest assessment to tell us that George has made progress: we have seen that unfold right in front of us.  Every single new word and every moment of connection, however fleeting, has been a cause for celebration.  However, it is always nice to have these things acknowledged as part of a formal assessment, to receive confirmation that the progress we see is not just the imaginings of hopeful parents.

The psychologist who led the assessment started by talking about adaptive skills – play skills, social communication, daily living skills such as tidying up at the end of the day, going shopping, and knowing to look before crossing the road.  In this area, George has made very little progress over the last year.  He has not actually lost skills, but compared to typical children of his age, he is relatively further behind than he was a year ago.  We discussed possible reasons for this lack of progress: Gerard and I are often so exhausted and worn out by the demands of day-to-day life that sometimes we just take the path of least resistance.  On hard days it is easier to tidy up ourselves instead of going through the whole time-consuming and exhausting process of prompts and reinforcements that would be necessary to get George to do it.  But recognizing that short-term pain so often leads to long-term gain, we have to change our strategy.

As it turned out, that was the only bad-news part of the whole assessment.  We spoke about verbal skills: George’s vocabulary and use of language, whether he can read and spell, how much he understand what is said to him, his ability to follow instructions with and without additional prompting.  A year ago, George had the verbal skills of an eleven-month-old.  Now, he has the verbal skills of a 30-month-old.  He is still well behind where typical six-year-olds are, but the gains over the last year are huge.  He has made nineteen months’ worth of progress in just a year.  So while there is still a sizeable gap, the gap has narrowed.

When we started talking about non-verbal skills, the news got even better.  Non-verbal skills include things like cognitive skills, problem-solving, understanding of what numbers are for, the ability to see patterns and solve puzzles, and all that kind of good stuff.  George has, to put it simply, made a gigantic leap in this area over the last year.  A year ago, he was functioning at about a twenty-month-old level.  And now – I get goosebumps just thinking about it – he is functioning at a 51-month-old level.  That, my friends, is a gain of 31 months – more than two and a half years – over the space of just one year.  Yes, his overall functioning in this area is still about two years below where it should be.  But a year ago, it was about three and a half years behind.  Again, a narrowing of the gap.

Overall, George has moved down on the autism spectrum.  While he is clearly still on the spectrum and has a long way to go, his autism is not as severe as it was.  The therapy that he has been going to has been making an enormous difference, and with continued therapy and intervention, George can move that much closer to where he should be for his age.

I don’t have a crystal ball.  I cannot say for certain what George’s future holds.  Maybe he will never be much of a talker.  Maybe he will never be able to live completely independently.  Or maybe he will – who am I to say something like that cannot ever happen?  But there is no doubt in my mind that he is loaded with potential, and that he will be great at whatever line of work he ultimately chooses as an adult.

Whatever the future holds for George, he is my boy and I am so proud of him that I could just weep.  It is an honour to be Mom to such an amazing little boy.

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