Saturday, May 21, 2011

Life goes On

Well, I feel like I've dropped the ball.  But really...not really.

We got word this week, officially, that our son is intellectually disabled.  We've certainly known since before he was two that there were points of concern.  His gross motor skills were delayed as was his speech.  This can happen.  Friends of ours have a son with a similar combination of delays who went on to be very accomplished.

It would seem that will not be the case with our son.  At 7 he is still working at the level of a 4-year-old.

So now my quest for health, which is far from complete, will branch out into a quest to assist our son in becoming everything he can be.

It is interesting how this worked out.  If we'd received this information last year, I would have been unable to process it fully, or at least as quickly.  I would have been less able to do anything about it.  I remember sitting in on our son's IPRC (Identification, Placement and Review Committee) meeting last year, having brought in some help, feeling like I could barely follow what was happening.  I was so foggy.  I am not sure I could actually sign the legal document that is the IPRC report.  So I took it home and reviewed it.

As it is, our son's diagnosis has come at the end of a year of hard work on my part, trying to get my brain functional again.  It also comes at a point where I am rather disenchanted with 'systems'...medical, educational...but mostly medical, because of what I've learned is or isn't happening and how much suffering and loss of productivity is resulting from this.

It would seem that the upcoming year will be another year of hard work and discovery.  We are blessed to have in our circle of friends and family several people with expertise in areas of education and/or working with the disabled.  Alread the ideas and opinions are flowing thick and fast.  This is good.  I know how the 'rabbit trails' can work.  You start with an idea to investigate and as you do, other ideas surface until you forge a path that seems to make sense.

I am not coming to this totally unprepared.  I have been reminded that our son's condition is not an illness in need of a cure.  It is a lifelong conditon that must be worked around, accomodated and lived to the fullest.  Only time will show us just what that will mean for our son.

Already, it has been suggested that we investigate Gardner's work on multiple intelligences.  I believe this is valid.  Our son's testing did not show any particular strengths or weaknesses, but did she test his musicality?  This is one thing in which our son seems very strong.  He also has a 'thing' for colours and identifies them more easily than he identifies common objects, it seems to me. 

I want to check a couple of medical possibilities.  Thyroid, of course.  I am very sensitive to this, having discovered what I have about my own health.  In the process I have also learned just how devastating and mulifaceted in its effects a thyroid malfunction can be.  Two areas strongly affected are speech and intellect.  I also want to try again to get a proper hearing test.  We have tried before, but our son was not cooperative.

So, my little buddy will be training us as advocates.  I've been learning to be an advocate for a while now, for myself.  I guess now it's time to try this for someone else.

For our son, advocacy may be of a particular importance as our son is not a 'behavioural'.  He is a nice kid, reasonably polite with no particular attentions span trouble.  He will be easy to pass over when it comes time to allot classroom assistance.  But he will not learn without that assistance. 

2 comments:

  1. Hi -

    Sorry to read this. Are you giving the little guy iodine?

    Know about the link between DD & iodine? The Yahoo group? (iodine@yahoogroups.com)

    Wishing you and son *vibrant* health! :o)

    Rachel in Seattle

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  2. HI Rachel

    Yes, our son is receiving iodine. It has made a big difference in my health (I can sure feel it when I take a day 'off'!) and I am certain that it is making a difference for our son.

    He's been on iodine for about 8 months. People have remarked on how much he's grown. Judging by clothing sizes, he's narrowing the gap between himself and his age peers. His teacher last year had made a comment that he always had a runny nose.

    Not any more. And when he does get a sniffle, it doesn't last long.

    He will be 8 years old in the new year. A couple of weeks ago, in the midst of a bear hug with his much elder brother, he whispered to his brother "I am in immense pain". A few days later he asked if I could "spare some chips".

    I'd say his verbal skills are doing well, too?

    I actually have a blog for iodine...

    drinkiodine.blogspot.com

    Thanks for stopping by!

    ReplyDelete