Sunday, September 11, 2011

"I hope Kyle can get back to where he was 9 months ago..."


Sometimes they say autism is like two steps forward and one step back...  With Kyle it's usually two steps forward, three steps back, repeat, repeat, repeat.

This dawned on me today as we started the fall weekend activities. Today he had his special needs swim lesson. Now last year we had a real nice routine going.  Kyle was doing great at his swimming, was starting to listen to his instructor and kick his feet...but MOST IMPORTANTLY was having alot of fun!!  And after the swim lesson and the shower and change (which he was enjoying) we'd go into the little cafeteria and he would sit and happily eat his lunch while watching Sesame videos on my iPhone. He would eat GREAT there and we would literally make a day of this one activity.

Well Kyle's behaviors have been a nightmare this summer and I said in yesterday's post we were deciding which fall weekend activities to even bother with.

Well we chose the swim lessons at the Y even though in the past few months he HATES going in the pool (EVEN THOUGH HE'S AN EXCELLENT SWIMMER!)

So I take him today solo and he did pretty ok in the pool and with his lunch...thats not the point of this note.  It's that the whole day leading up to the swim lesson and the cafeteria lunch I kept thinking "I hope Kyle can get back to where he was 9 months ago..." and then I realize that I feel that way alot.

While lots of ASD kids make progress and we hear lots of people say it gets easier as they get older we don't feel that way. For us it's gotten worse each year and we always find ourselves saying or thinking "if only Kyle could get back to where he was when he was ___ years old. It doesn't matter how old.  It's just that literally every year we can say that.

And we're not looking back and longing for the days when he knew his abcs, colors, shapes, etc (see this post for the story of Kyles regression). We're just longing for the days when we would sit still and eat an entire meal (sometimes with a fork!) and had a bigger variety of foods that he liked or drink water out of a water bottle without spilling it, or took joy out of swimming, car rides, playgrounds, walking around the block, school, etc.

Just a little progress that lasts and doesn't disappear would go a long way for this mom & dad and would recharge our batteries for the long haul ahead.

"I hope Kyle can get back to where he was 9 months ago..."

That's all I got. Over and out...  :-)

1 comment:

  1. Hi Autism Daddy, I know where you are coming from. My son is only four but it seems that progress in one area means regression elsewhere. Its just so tiring at times. Today a tiny small thing happened when after two and a half years of eating very little amount wise of food and only eating chips (fry's) , pasta, bread, cereal, he ate a banana. So small but I was actually holding my breath watching him eat it. Will he ever eat another piece of fruit? I will probably wait another couple of years. My point is the progress in any from is hard to come by so losing it bloody sucks.

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