Pride of purpose

Stephen will be 12 soon – in 13 days to be exact – and that will mean that we’ve known he has autism for almost a decade.  Most years I’ve done a post to commemorate his birthday, and maybe I’ll still do that, but I felt inspired to get some thoughts out today.

Autism is still a horrible, frightening, frustrating disease, disorder, whatever.  There are times when it breaks my heart and makes me feel hopeless…but not nearly as frequently as in the past.  And, honestly, part of the reason is that I’m finally on a good medication that keeps me from having total freakouts on a daily basis…but there is another element.  Stephen tries harder every day to learn useful words.  I’ve also found him on more than one occasion lately doing his own Google searches – holding a video in one sweet, soft, babyish hand while he diligently types the name of the video with the other one.  He used to always come and get one of us to do it for him.

So even with a child this affected, time brings improvements…glacially slowly, perhaps, but the overall trend is positive.

Something else has been creeping into my consciousness recently.  A perspective change of sorts…having a child so very dependent upon you for every need can (and does) often feel like an overwhelming burden.  It’s a hard life, nearly devoid of spontaneity and spur of the moment events…but what I’ve realized is that there is a graceful dignity that can imbue nearly every aspect of this life.  We are Stephen’s caretakers.  We take care of a soul who, without a caring network of family and teachers and friends, would be utterly lost.  There is a sense of pride in keeping him neat and clean and as well-fed as possible.  There is a peaceful feeling that comes with knowing that his hair smells of shampoo, that his clothes are clean, soft, and comfortable, that his socks are straight on his feet so the seams won’t press against his toes…  He can’t tell us when small things are uncomfortable or irritating…and I’ve found honor and purpose in caring for my son…in making him smile, in hearing his laughter when his daddy blows bubbles while Stephen’s in the tub, in seeing his big brother engage him and tickle him till he laughs that precious laugh, in seeing his obvious delight when one of us understands what he’s saying.

We could do our “duty” and make sure he is appropriately fed, clothed, and sheltered.  But there IS joy to be found in trying to understand him – to decipher the problems, to try to find solutions, and yes, to honor this little human person, to give as much scope as possible to a life limited by a cruel disorder.  I have always known that his soul shines, his innocence untarnished…to find deeper truths in this life of ours is a blessing that I embrace thankfully.