New Things on a Thursday

We're still on vacation, so after dropping Daddy off at the bus stop this morning, we ran some errands before heading up to Nana and Apu's house for some furniture rearrangement. Whew! After that, we hung out at home. I proposed going out to a park and encountered meltdown. Belay that outing.

So we took it easy some more, calmed down, and had lunch. I actually got most of the decorations down and the dangerously dessicated tree out of the house. It's the earliest I've ever taken down Christmas and I realized that I didn't get out a third of my things in the first place because things were so stressful and sad. It was kind of a blank feeling, like "well, that was pretty much a wash-out this year." We all did all make it through -- that's the main thing.

We worked on our thank you cards from Christmas and then took advantage of the warm afternoon and went swimming. While James and his sister had a blast, I worked the kinks out of my knees and blissed out in the outdoor jacuzzi while keeping an eye on the kids. James was excited to see one of his teachers from school and talked to her whenever he got near her.

Then it was time for out of the pool. James started crying, he was so cold once he the chilly afternoon air hit him. Luckily I changed him in less than a minute. It took longer to calm him down though. And lately, when he gets upset, he cries and starts shouting things like "You SHUSH!" and "And I said NO!!!" and "You go away now, Mommy!"

I don't get mad at him, but I do let him know that last one is really rude and he needs to say sorry. Then I get him to talk about what's bothering him (like this afternoon -- "Sounds like you're pretty cold, is that right?") and show him there's a solution that will make things a bit better ("Let's get on our dry clothes and go home. We can visit the helicopters on our way. Won't that be fun?")

Unfortunately, our gym's only family bathroom and shower are outdoors, which is really inconvenient in winter.  I strategized the bathing scenarios on the way home. Myself first, and then a bath for James while I dried my hair. Then wash James' hair (cringing as I think about this, but it's necessary) and dry him off while my daughter cut up potatoes for baked fries for dinner. Then clean up tree needles and get ready for dinner while daughter showers. Have James watch a video while I help her rinse, apply conditioner, and comb out/blow dry her long hair. All that took over an hour, but we all enjoyed our dinners with clean (dry) hair in our jammies. Thank the heavens that James has stopped screaming and crying if I turn on the hair dryer.

I cringe just thinking about washing James' hair. because it requires nerves of steel. He howls, screams,  cries, and thrashes so. Plus his cries of "No, Mommy, NOOOOOOOOOO!" make me feel like I am scarring him for life. Usually it takes him a LONG time to calm down after ... or he passes out into an early bedtime.

This time, however, he was merely unhappy. No crying. I hardly breathed through the whole operation. Another new thing - he talked out the steps in advance; we agreed on how many scoops of water we'd use to wet and then rinse his hair, as well as how long we'd do the actual shampooing.

Part of me want to light a candle, or something, in hopes that the water torture of bathing is behind us. Both my children hated having their heads get wet like. They howled and cried and screamed like possessed monkeys. After struggling for years with my daughter, I was sapped for dealing with James when he started rebelling. My husband does not help bathe the children, so I put off kid bathing and hair washing for ridiculously long periods of time. This past month I've finally nerved myself to do more often, and I think it's now becoming part of The Routine.

Last new thing: James, sitting on the sofa, reading "Where the Wild Things Are" to himself. He can memorize books like this, but I watched him and he was prompting himself by reading the words. What a warm glow that was! He also likes this book now because he identifies with Max. I think he needs some Wild Things in his room ...

Strong Love

Having James as my child has been an adventure. Our kids teach us new things and make us rediscover or see our world differently.

I've learned many lessons from both my kids - patience I never suspected I had, unconditional love I hoped I had, and how to be strong and not live in fear.

Especially so with James, who is autistic. Like many spectrum kids, he displays a complete disregard for personal awareness/safety that requires almost constant vigilance and nerves of steel. I can't tell you how many times I've seen (in my mind) his playful, laughing face looking backwards at me as he dashes out in front of a moving car and wham! seeing his light go out, and no more James. It's literally one of my worst nightmares, because we've had close calls. Every time we exit the car in a parking lot I have to remind him to wait by the car until we can walk together.

When he was younger, James would leave the house and go wandering off. Sometimes he'd stay in the yard, sometimes he'd wander down the sidewalk. I remember waking up one night and finding him standing in the darkened house right by the front door, tall and able enough to open the locks and wander outside. I've pretty much been sleeping on the sofa ever since that night.

Both my kids hated like poison to have water on their heads and having their hair washed. They freaked out in a pool or large body of water. They panicked if  anyone splashed water their way and did not like the unsteady buoyancy while in water. It's really difficult to describe the mental fortitude required to deal with these reactions to basic self care activities.

I was able to start my daughter's water safety early with Mommy and Me swim lessons. Her sensory sensitivity has not been as extreme as James'.  Still, it took over 3 years of swim lessons before she would put her head underwater.

James has been even more of a challenge to get used to water. Showers literally terrify him and he considers washing his hair as a form of water torture. I made it a point to take both kids into the pool with me during the summer. Countless afternoons we'd sit on the steps and I'd coax the down one more step, try a little splashing, and take them out into deeper water and get them used to floating with my hands supporting them. It's been a huge uphill climb and I come from a very swim-happy family. I am lucky to have had the opportunities to be persistent with water safety preparedness.

We live near a big river and like to visit the ocean, so I wanted to get them confident and learn how to be safe around water. I know that kids are attracted to water and wanted to help keep them safe. I did not know, when I started all my pool excursions, how dangerous an attraction water, wandering, and autism can be.

Sadly, I am learning (CDC report, in PDF format). Over the past week, I have read of 2 autistic children wandering off and being found later, drowned in water.

In particular, my heart goes out to a local family, the Lynches, who lost their daughter a little over a week ago. Seeing her pictures broke my heart a little. She was so obviously loved, and her quirky smile so beautiful and so like my son James'. 

   

It just kills me a little to realize she's gone so suddenly. Because that could so easily have been James. Because these special kiddos make a light in the world; they can be so difficult to manage and also so horribly missed when gone.

I know how strong my love has become for James and all his uniqueness, so I understand a little what the families are grieving and how much they have lost. This post in in support of the family of Mikaela Lynch.

If you would like to read more, please visit the FaceBook page An Outpouring of Love for the Mikaela Lynch Family, and show your support.

Anxiety Ante

We're dealing with something new with James on this trip: anxiety ante. There has been more repetitive verbal stimming, trying to sit on his head, and throat clearing than usual - all of which are his typical anxiety coping habits.

I am discovering the next level up of anxiety-triggered behaviours for James seems to be: accidents. He's slipped down the stairs, bumped his head, burned his finger, and scraped his ankle, each of which set off a bout of crying and fixation over the pain, and loud, repeated demands to "rip it out/off!"

While all this raises my blood pressure, I do know that, once over the initial shock, James is quite capable of tolerating a lot of things. So I try to listen what he says, administer something soothing, and hold him and tell him that yes, he got an owie and it will hurt for a while, but then he will feel better. Usually I add "And be more careful" as a chaser. What the heck - makes me feel better.

The first aid kit and ibuprofen have been well used on this trip. And good golly, I think I can beat Superman in the "nerves of steel" department, because we're all still alive and relatively happy. And in one piece, because that is important.

Just this morning, James threw me a new one. Throwing open the door to the porch, where I'd been enjoying a morning view of ocean and quiet, he announced, crying, "I have a buuuuuuuuuump! We need to take my red tooth OUT! NOW!!" Fifteen minutes, a damp paper towel, ibuprofen, and a cold yogurt squeeze up paper, and I was pretty sure the source of the misery was being away from home and (for the record) a small bump on his tongue. We had a small interlude of quiet with the iPad ...

Seconds before the ill-fated bathroom break.

And then he needed to use the bathroom.

I could hear the the drama that ensued below after water somehow mysteriously got on his pajama top. Between the wailings, I prompted him to just change his clothes and come back up here. This is why I pack extra jammies and underpants. As I type this, he's now wearing his tractor jammies, sitting in a chair and getting the piggies in Angry Birds, like nothing ever happened.

And now, more coffee, and perhaps ten more quiet minutes on that porch.