Loss and Love (#429)
When I first started blogging at My Son Has Autism, the earlier incarnation of this blog, I wrote that “Finding out your child has autism is like the end of a love affair and the start of a new, lifelong, really beautiful relationship.” As Charlie gets older and older, the feelings of shock—of “this autism business can’t be about my child, about us,” on realizing that, yes, my son has autism—have faded to the point of being history. I no longer think of Charlie’s being autistic in terms of loss—of “hopes and dreams” of a life lost—and I relish every day of our different-than-expected life with Charlie, our autistic son who we love more with every day that passes.
It has been a slow and gradual learning process for me. I prefer not to speak of Charlie’s “deficits” or “impairments” (in his speech, for instance), but of “skills that he does not have yet or is working on” and of skills that he does have, like his swimming and bike-riding. I shrug off any disappointment that Charlie is not hanging out with the other 9-year-olds and striking surfer dude poses as I read a book in my beach chair; I am amazed at being able to meet a great-hearted girl like Kristina and to remember her swimming with Charlie at high tide last Friday.
These—-and Charlie’s big smile when he caught a tall wave this afternoon—are the wages of autism, “the gift that–more than any arts and crafts picture frames or snowmen or potted plants a teacher and an aide prompted him to make–Charlie gives us on his own, gold smeltered from flesh, sweat, blood, spit, and tears (our own mixed in)” (as I wrote back in February).
And these two weeks at the ocean, at the beach house, are, I think, the one gift that Jim and I can give to Charlie that means the most to him. Toys and digital things and books—the usual presents given to a nine-year-old boy on his birthday—are fine, but there is nowhere that Charlie feels more at home, nothing that he loves more, than the ocean.
“He’s an elemental kid,” Jim remarked as the three of us stood on the beach today. It was early evening and we had gotten to the ocean just as the lifeguards were packing up to leave at 5pm; Charlie had been engrossed in completing a 150-piece puzzle of the “scrambled states.” “Puzzle piece,” he had said, smiling sweetly, and looking at the boxes of puzzles on the coffee table. “Dinosaurs? Lego police? Horses?” I asked. “Diss one,” Charlie had said and pulled out the scrambled states puzzle (last done, with my help, on Sunday). Charlie did the entire puzzle on his own and then put it quickly away as we said, “Let’s go swim in the ocean.”
Just as he finished putting away the box, Charlie screamed and started to cry. He screeched loudly as Jim and I walked with him to the ocean (“I’d like to be wearing my ‘I love someone with autism’ shirt,” Jim said as we walked onto the sand with our loud child; the shirt was in the washing machine.) We all went into the waves and Charlie started swimming, still crying and occasionally saying “no Gramma Granpa! no school tomorrow!” I explained to a man who asked me “he’s not happy?” that “he’s autistic” and that (as I thought) it had just hit home to Charlie that our vacation was almost over.
Jim stayed out in the ocean swimming with Charlie; I got the boogie boards and swam out far with the two of them, and so was treated to flashes of a smile from Charlie when he caught a brief ride on a big wave. By the time we made our way back to the beach house, the only wet on Charlie’s face was from salt water. Jim and Charlie swam out far enough to see a very large fish; crabs pinched our toes and we brushed up against jellyfish and seaweed again and again: The ocean is full of life and of wildlife and the swimming pool is going to seem like a chlorinated bathtub by comparison.
No wonder Charlie cried so hard and loud this afternoon, knowing that he has soon to leave what he loves the most. I anticipate some heartbreak, and heartbreaking cries, words, or vocalizations, or all, this weekend.
Charlie himself knows a lot about loss and love.
We Go With Him by kristina chew 
I will keep my fingers crossed and say a prayer that the transition home goes well. We ALL hate coming home from vacations. My husband and I were literally planning our next escape in October to the north Superior shore (and I even booked our lodge today too) before we drove home from vacation. To think how difficult these transitions are for us, I can’t imagine the ache in Charlie’s heart to leave his place. May you be blessed with gentle waves on the way home and not crashing waves my friend!
I echo all Laura had to say above.
I have really enjoyed reading about Charlie’s wonderful times at the ocean.
I was tempted to say things like, save lots of pictures for Charlie to look at or find a fabulous way to redirect Charlie once you get home and then I thought…why shouldn’t Charlie be allowed to feel sad and process this ending?
This is something he loves so much and will miss. I do hope the transition isn’t too hard on you and Jim.
This is the second summer that I’ve (virtually) accompanied your family to the beach, and the second summer that Charlie’s joy has give me a rush as well. I have to admit that as you pack the car and say farewell for another year I’ll be feeling the let-down too. Hugs to Charlie. And I hope you are going to frame that photograph of him wrapped in a towel. It is glorious (and would make an awfully nice Christmas card…)
That was just beautiful, Kristina. As always, your words resonate with such meaning for me.
Wouldn’t you like to see Henry and Charlie working on some puzzles together?!
Good luck with this ending. Today with Henry I felt sorrow for his sorrow at having to go to school. But as he gets older I am also starting to take a tougher attitude- everyone has to go to school/everyone’s vacation has to end: it’s important to learn how to deal with those sad facts.
Thanks, friends, for the forityfing words! Charlie has already had a few “no Grandpa” ‘s—–I do think he has to learn to process and handle these emotions hopefully we can help him navigate any bumps.
That first picture of him says it all. That smile is beautiful! I can say from my own experience of growing up with the jersey shore in my blood, I know what Charlie is feeling. I believe I have two boys here that share the same feelings of the ocean and the whole beach experience too. It really is a great gift you have given your son and I know what he has given you in return is more than words can say. Good luck with the transition home. Wave to me when you pass my exit.
I will wave!
It’s been a real treat to have so many “virtual” guests on this trip—I found that, if I sat in a particular part of the beach house we have been renting, with my laptop pointed in a particular direction, I could get onto the internet. So I have been able (as you can read) to post daily, and to stay up to date with so many friends all over.
Kristina,
It’s always nice to read your blog and gives me that encouragement to carry on. Isn’t it great to sometimes reflect on the past? It just simply reminds us of the beautiful things in our sons that we have taken for granted.
Kristina, I’ve tagged you, if you fancy sharing about your favourite books. I know I’d be interested in knowing.