Sunday, August 25, 2013

Our youngest child is wonderful.  He is nine, but is not 'normal' for his age.

He is just about to finish grade two.  He has an Individual Education Plan (IEP) which means some or all of his work is modified so he can do it.

We have four other children, all adults now.  They're a smart, talented bunch and are now making their ways into the adult stream of things.  Our little man will be charting a different path, it seems.

It is a hard thing to know when to push and went to leave things alone with him.  In some ways he seems non-exceptional.  He's known for a long time that we don't always understand what he's saying.  He has for years been able to compensate for our lack of initial understanding.  He has figured out many ways to get us to understand him.

Interestingly, now that he's in school and getting lots of help, we have more episodes of frustration on his part.  I can't say whether it's because he is being trained away from his natural methods of compensation, or if it's because he's trying things that are more complex and just hasn't got all the bugs worked out.

I think every parent has some anxieties about the futures of their children.  Having a child with a handicap multiplies and intensifies the anxieties.  Will communication difficulties prevent him from telling us things we should know?  Will his friendly nature lead him into unfriendly situations?  But really...don't other "normal" kids have these issues too?

Almost a year ago, our "stick-handler" (who is actually known as a coordinator of services) told us that we needed to start thinking about how Aaron will be cared for when he's an adult.  My first thought was that I just wanted him to get into grade two!  But of course the stick-handler is correct.  With other children, it is assumed that at some point they will be on their own.  With our youngest, we cannot assume that he will be able to reach this level.  Will he live with a sibling?  A group home?  Might he be able to live alone?

There was another mother, a very long time ago now, who had a very unusual Son.  I wonder if I might call on her for some advice?  She has some powerful connections!

Our son has a fascination with Bible stories.  It is because of his interest that I now know the Old Testament as well as I do (albeit in very simple language!).  I am actually beginning to know the chronology of the Hebrew Scriptures.  And I am seeing it with the simplicity of a child.  The Old Testament has more than its share of adventures and destruction in it, which suits our little man just fine.  He is definitely a "crash 'em up" sort of kid.  I only hope that he sees Scripture as more than make-believe.  On some level I am sure that he does.

Our little fellow has already received his First Communion.  He was with, or even a little ahead, of his age peers.  I was nervous about all this.  As a catechist who tries hard to follow Church teaching at all time, I did not want things made easier for our son just because of his handicap.  Although I was fairly certain he understood (as well as anyone CAN understand) the Eucharist, I was worried about his First Reconciliation, which I was not willing to allow him to skip.  I shouldn't have worried about our son's speech impairment.  Our priest, who did not have English as his first language, took the unusual step of asking me to come to our son's "translate" if need be.  That was the only time we needed to do this.

Now, since our son received his First Communion, it seemed like his behaviour deteriorated to the point where I was ready to have him stop receiving.  A priest counselled me otherwise.  As long as Our Lord is in fact being consumed (and we make sure that He is!) that God can apparently account for the foibles of little boys.  In a way this is comforting to me, as it makes our son normal for just a bit!  So we just watch.

Days are busy and fly by so fast.  So often I wonder if I've prayed enough.  It is not just our disabled son who needs prayer, but all of our children.  Frequently.  Constantly.

But no guilt, right?  I smile as I write that.  No one ever prays enough for anyone, I'm sure.

Our disabled children are a gift.  We need to understand that.  We need to humble ourselves, relax ourselves enough to receive, even if we do not always feel, the gift.  Just as parents are to help their children reach sanctity, so do our children help us.

Talking with other Catholic parents of variously intellectually disabled children it is so wonderful to see the effect an unusual child has on the family.  Parents who are accustomed to communicating with bright children are suddenly stumped.  This child CANNOT understand in the the way our other children understand.  It is a whole different game plan.  The parents cannot rely on the pat responses to situation.  If a standard-issue child needs something repeated 47 times to allow them to learn, a disabled child may need to have the same thing repeated 147 times...or it just might be beyond them.  And we must learn patience.  If we cannot master patience in ourselves, we must be humble enough to ask for help.

Children are all precious.  Children outside the usual are even more precious because of their vulnerability. They are the hot-house orchids among the roses.  God, give us what we need to tend them well.