In Which Charlie's iPad Takes on Water
Order and Calm (for the most part)

Why Raising Our Lovely Boy Can Be Really, Really Hard

Ocean and beach boys

I am learning that one of the hardest things about raising our growing older, growing up boy, is figuring out how independent he can be---we can afford for him to be---while still keeping him safe.

Sunday at his favorite beach, Charlie jumped upon his boogie board and kicked his way out to sea.

He had been holding the board and running back and forth, just getting his feet wet, as he has been doing. Jim and I were standing right at the waves's edge with Charlie and, as it had been some while and he must have been getting chilled (it was 87 degrees inland, in the 60s at the beach), gently urging him that it was time to return to the car. Then Charlie went in and kept going.

The current quickly pulled him far out and over. Charlie stayed on his board, impervious to how cold the water was, to how he was bobbing in and out of our view, and to our calls which, as you can imagine, grew quickly frantic. We called 911.

The police came immediately and the EMT right after. By that point, Charlie had turned himself to face the shore and started swimming in. I think you can also imagine how relieved we were to see him standing, dripping wet in the foaming waves.

I ran out with a towel. Charlie stood for a minute with it around him and then, understandably overwhelmed, ran down the beach with Jim after him. They slowed down to walking and we all went back to our car where the EMT checked  Charlie who just wanted to turn on his iPad.

What had happened was Fear #1 since Charlie started to swim in the ocean; since Charlie became a better swimmer than Jim.

No more trips to the beach with the boogie board till Memorial Day, when the lifeguards return. We'll have to do a social story or the like to explain this to Charlie, though I'm sure he knows it wasn't right to have his parents yelling at him or policemen standing on the beach. Telling Charlie how cold the water was, or that he could get hypothermia, or things much worse, won't have much of an effect on him. While he may grasp something of what we tell him, it's a different matter when he's in the water, entranced by the waves and the thrill of using his boogie board.

Jim has noted, too, that Charlie is very fast on his bike. He's got a good grasp of street signs, stopping at intersections, traffic, but one can never be too careful. At school and at home, we have started to teach Charlie to carry identification with his name, our phone numbers, and his autism diagnosis.

The rest of Sunday passed very uneventfully. Charlie started talking about "school Monday" and "back to school" on the ride back from the beach. He packed his lunchboxes with juice, crackers, chips, watermelon, and a pack of sushi (he usually eats it as soon as he sees it). He went to bed early but did not sleep till 11pm, saying "school tomorrow" over and over intermixed with "no." At 10.30pm he insisted that Jim come upstairs and lie in Jim's and my bed.

With Charlie's fourteenth birthday approaching in just over two weeks, it's no surprise that he wants to be more independent and do the things that he wants to do---that's teenagerhood. But Charlie has distinct limitations, like the difficulty getting him to understand how cold the water was, or, needless to say, how dangerous swimming without a lifeguard is.  We sense that he feels the cold but his capacity for putting up with it is far greater than for most of us. Certainly his desire to swim in the ocean outweighed how cold the water felt and how rough the waves.

Just glad our boy is home safe and sleeping now, anticipating "school Monday," iPad beside him.

Comments

annette harris

Kristina,
My "mother" heart was with you as I read about Sunday's beach adventure. So relieved it turned out as it did.

Feebee's Mom

Shannon

So glad that he came back. So so so glad. How is your heart rate?

Does he respond well to social stories? Have to say, that is one thing I'm appreciating about Leo's new iPad 2 - instant social stories, e.g., about what *just* happened. (If it's not a 911 emergency, for instance).

If the sleep fairy ever came to our house, I would give one of our three wishes to your family.

Kristina Chew

Maybe we will have to consider the iPad2, so long as someone comes out with a totally waterproof case soon! (Otterbox, are you listening?)

It seems a certain kind of irony---so many efforts to teach Charlie to swim and bike and now we have to teach him to rein it in.

Charlie is on and off with social stories. Usually he just takes a look at them once or twice. But you can be sure I'm looking through my files to find one with lifeguards at the beach for a social story.

Heart rate---well, let's just say, destressing by blogging and writing, knowing that Charlie is safe and sound.

a parent

Wow... This the kind of thing that always worries me, especially now that Rufus is a big, strong 12.5 yo. Alls well that ends well, but really... wow. Treadmill, maybe?

On the social story front, we've been doing nearly instant stories with Pictello on our iPad 1. I really like it.

Saralynne Precht

So thankful that Charlie's all right. My heart was racing just reading your post...I can't imagine how you must've been feeling. Ah, parenting our special boys..it can be such a tight rope walk, no?

Kristina Chew

Thanks for the Pictello app, already looked it up!

Oh yes, parenting is a tight rope walk. Sometimes it seems it's more like walking on a thread, a very fine one.

Kristina Chew

@a parent, with Pictello, can you record your own voice?

We have been using Social Stories but it only allows a limited amount of text.

Hai Dang

I am glad that Charlie is OK.

Life Skills Teacher

So glad to hear Charlie is safe!

Almost all my students have "personal ID" goals (and everyone in my room works on it.) However, I am never completely sure they'll use it when it counts, so I always council parents to look into medic alert or similar products. There are lots of options to accommodate different "sensory styles" out there and I believe teaching students to keep them on (in the least intrusive place for that student) is a very worthwhile goal.

KWombles

I know that had to be absolutely terrifying.

It's very disconcerting after these mishaps that it seems like they don't get the significance; I hope it's that there's a lag in my son's ability to communicate that he gets it, not that he truly doesn't get the danger.

Niksmom

Kristina, I can only imagine the fear you must have felt. My heart is still racing though I know Charlie is fine. I hope the social stories help and you are able to help Charlie find and understand his limits (safety). This is one of my biggest fears with Nik, too, as he gets older/bigger and asks more and more for walks and the park and swimming.

Linda

Oh Kristina your mother blog readers are with you. 14 is a tough age regardless; follow your instincts and hold the line. I found less words to be best, "Beach Memorial Day weekend", clear, matter of fact and consistent. The temptation to go into a litany of "whys" leads the kid to thinking there is a loop-hole to be had when there is not. Charlie knows he pushed boundaries to the limits, he also craves limits being set. It is ok for him to see sad and worried parents responding to questions about going to the beach.
What a scary day.Teenagers are tough but you and Jim are tougher. Tough does not mean stern, tough is remaining consisistent, with the answer a cheery "swimming in the summer".
The rubber is meeting the road, fasten seat belt time:-)

Kristina Chew

Those are great suggestions, Linda, especially about the dangers of a 'litany of "whys"'---Charlie has been really pushing the boundaries lately, even as he's shown so much more understanding and awareness.

I think of a passage in Linda Shumaker's A Regular Guy when Matthew wants to drive, gets hold of the keys, and drive the car into their garage wall.

As we wer standing on the beach yelling at Charlie to come back, the thought of the back of my mind was, 'and here we so wanted to teach him to swim and to swim in the ocean......'

babz

glad all is ok, that certainly sounds like a very scary situation. i would definitely wait till memorial day weekend for your next trip to the beach.
on another front, have you been watching the pbs series on autism during the 7pm mcneil/lehrer news hour?? your thoughts?

farmwifetwo

Glad everyone is home safe. We've had 3, 15min, vanishing acts on the farm over the years. Like Charlie, he is "safe" (Charlie can swim easily, mine knows exactly where he is and how to get home) for the short term, but we need to fix it before they are harmed since they don't actually understand the danger.

At 9.5 we're already exibiting a lot more independance and I agree with Linda... KISS... I find a flat out "no" gets a quicker response than a "maybe later" that they don't understand, that he tries to negotiate a time that he can do it. Mark swimming on the calendar and when he's upset he can go and look for himself. Mine has a social stories/phrases book at school that he uses... I need to get a copy of it for at home. He doesn't need it as much here... but...

I'm not looking forward to the teen years :) Atleast for the moment he's still shorter than I am... although already to my chin..

S

I too share the collective sigh of relief, that Charlie and parents are OK. I can imagine few more terrifying scenarios for a parent.

But here's some questions: how did the EMTs and police respond when told about Charlie's diagnosis, and how that may complicate efforts to help him? Did you get a chance to tell them? Were they aware about how to handle him, did you get brushed off? Would they know in future to look for a Medic ID for someone like Charlie, especially in these tense times?

Please do write a full post about your experiences with emergency personnel, since you have dealt with them in the past too. Have you had to do awareness sessions with them or has someone already done that? What happens after Charlie is age 18 (I presume you will have to file for guardianship or do you automatically get it because of his diagnosis)? How do you make emergency personnel aware of that?

I hope you can write something about these issues sometime soon.....

Melanie Harper

Oh holy cow - my heart stopped when reading this, too! My boy loves all water, is big and strong and fast (100% high-tone and fast-twitch muscle), and will be taller than me by the time he is 10. So, I really really get the fear here and the underlying thoughts about "How is X skill that he learns now going to bite me in the butt later?" Anticipatory parenting - that's what we special needs parents seem to do... So glad Charlie's OK!

Kristina Chew

@farmwifetwo, am thinking I'll put something on Charlie's iPad to indicate when Memorial Day is and he can use his boogie board and go in the water.

The teen years are turning out to be quite a 'ride'!

@S, the EMT personnel and police were very courteous and seemed quite well-informed about autism. Thanks for all the questions, will follow up!

@Melanie, anticipatory parenting, yes! so often the results are not exactly what we were thinking.....

Kristina Chew

@babz, No TV here---but I've been following the transcripts for the show. I was disappointed by the first segment with the mention of vaccines and all but like the one on adults, but that probably has a lot to do with Charlie's age. What do you think?

a parent

Pictello allows you to record your own voice and add your own pictures - the problem is iPad 1 doesn't have a camera... but ... you can run it on an iPhone or iPod touch (without buying a second time) which do have cameras and then transfer it to the iPad for viewing.

Another cool thing is that you can transfer social stories between devices - if you get a copy I could show you some that I've written (don't pull fire alarms, selling a car and buying a new one, going on a hockey trip). I really like the app.

Kristina Chew

I love the idea of being able to transfer the stories! You can't do that with Stories2Learn. I don't think we're getting Charlie an iPad too though that camera feature is might appealing---not that it's that much work to take a photo on my phone and email it and then download.

I'll let you know if we get it. Any other apps that have been helpful? I've not explored them much---have checked the recommendations by Shannon---as Charlie has only been drawn to the music and photos on his iPad.

a parent

AutoVerbal and Proloquo2go get a lot of use, but more as a different way to be echolalic than to communuicate. Maps and navigating in street view is used a lot - now I get told the specific route I need to go to get places. Some of the Dr. Suess books. Brick Breaker and Bugdom 2, Doodlejump are some games he likes. YouTube is a hit, though I can't control what he watches.

LAA and Family

I'm so glad everything turned out okay! I can completely relate to having to deal with the independence issues that are arising as puberty approaches! (My son is 12)

Kristina Chew

Thank you so much! We usually go to the beach on Sundays but did not today which I was rather relieved about; guess my nerves needed a break!

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