Dressing Up

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We’re headed to the high school tonight to watch their spring musical, “The Little Mermaid.” Richie walked in the door after school, and even before setting his backpack down or taking off his coat, he sought me out to talk through the evening’s agenda. Are we going out to dinner before the play?  Where? What time are we leaving? Is Gram coming along? What time will we get to the high school? What time will the play be over?

People with Autism like routine and predictability (full disclosure…so do I). I understand that since tonight’s activity is out of the ordinary, he wants to talk about our plans so he knows what to expect. The older Richie gets, the better he does with unexpected situations. In fact, he sometimes thrives with new experiences. He truly enjoys travel, he loves visiting people’s homes, and he was over the moon when my husband took him to a new town to visit an arcade filled with classic video games. But ask him to do his afternoon chores in the morning, and his incredulous protests reach frequencies only Scooter and Millie can hear.

Richie asked me a few more questions about tonight’s plans, then headed to the mud room to hang up his coat and backpack. He came back to me, looked down at the clothes he had worn to school, and asked, “Do I have to change my clothes for tonight?”

“Well, yes,” I said, “I think you should wear something nicer than a sweatshirt.”

“Ugh!” Richie answered, “Do I have to wear a tuxedo?!?”

 

 

A Bump in the Night

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My twins have been opposites their whole lives. She likes soup; he likes sandwiches. She likes hot showers; he prefers lukewarm. And even though their sleep habits are also opposite (Richie’s an early riser who falls asleep within minutes of getting into bed; Jillian’s a night owl who would read until the wee hours), they insisted on sharing a bedroom until they were ten years old.

Part of what made the room sharing so fun was the bunk beds: Jillian up top, Richie down below. And the arrangement worked for my husband and I, too, because if Jillian kept her reading light on too late, Richie would tell her to turn it off. And of course, if she didn’t, he would come tell us. The rules must be followed!

At age five, the kids’ bedtime was 8:15, but it was a pretty common occurrence for Jillian to wander back out of their bedroom after 9:00 PM. She would ask to use the bathroom, describe a scary noise she heard, or insist that she ABSOLUTELY HAD BEEN asleep, but the television/dogs barking/changing barometric pressure woke her up.

One night around 9:30, she made her second post-bedtime appearance in the living room (her first trip out had been for a drink of water). Seeing her reappear, I kept my nose in my book and gave her only about 10% of my attention; refusing to engage in conversation was my way of not rewarding her for getting out of bed.

“Mom, I really was asleep this time, but I heard kind of a bamming noise,” she said.

“Um-hmm.”

“Mom, it was kind of loud and it scared me.”

“Well, Jillian, it was probably just a car door slamming outside, or one of your books falling off the bed. Please go back to bed.” (Note how beautifully my No Talking plan is working here.)

“Well, I really was asleep but then I heard that noise and I thought I was dreaming,” she continued. “But I wasn’t dreaming; it was a real noise. Then I thought it might be a monster, but you always say there are no monsters. So I was scared but I kept trying to figure out what that noise was.”

“Ok, Jillian,” I told her in my most bored-sounding monotone, “go back to bed now.”

“Well, I counted all my animals and they were all still up in the bed with me. So it wasn’t them. Plus, they are too light to make much noise if they fall down. And it was a LOUD NOISE, Mom! And all my library books were still with me, too. So it wasn’t them.”

She paused, so I told her again, “Go back to bed, Jillian.”

“Well, then I looked down and Richie wasn’t in his bed.”

“WHAT?!? Richie fell out of bed?!?”

“Yes, that’s what I told you! He made kind of a bamming noise.”

How Not To: Start a Conversation

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“I would like to watch someone in our family fall off a tall building.”

“Excuse me?”

“I would like to watch someone in our family fall off a tall building. And then when they got really close to the ground, I would swoop in and save them.”

“Like Superman?”

“Yes, like Superman.”

Shoe Shopping

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I took Richie shoe shopping yesterday.  This is always a guilt-laden activity for me, because it’s always precipitated by me suddenly remembering, weeks or months too late, that he has feet. And that they grow. And that shoes don’t.

(Confession: I can get so caught up in the “keeping my children alive” thing that I forget they have needs beyond food, shelter, and Minecraft.)

Yesterday Richie walked through the kitchen, and it occurred to me that it had been a long time since he’d  had new sneakers. I bent over to feel the front of his shoe, to feel how much “room to grow” he still had.  But I never even touched his shoe, because as soon as I looked, I could see that the front of his shoes were deformed.  As in, the child had been wearing too-small sneakers for so long that his big toes had built some nice little condos out the front.  I straightened up and muttered the four words most appropriate for moments like this: Mother of the Year.

Part of Richie’s Autism is that he can’t feel his own body the way the rest of us do. He rarely tells us that he is hungry or thirsty; it’s like he just doesn’t recognize what these feel like. He eats regular meals – big ones – but I can only remember one time in his almost 12 years when he came to me and asked for food. Feeling cold is difficult for him, too; the school he used to attend let him go outside to recess once in 30-degree, wet weather without his coat. I happened to be in the classroom when he came inside, and although he was tremendously pale with a red nose and ears and could barely move his fingers, it never occurred to him that he was extremely cold.

Looking back at his infancy, I realize that the earliest indication of Richie’s lack of body awareness happened before he was even a year old. His twin sister, Jillian, was extremely fussy and was touching her right ear repeatedly. We made a Saturday morning emergency appointment with our pediatrician and walked in with both babies in their car seats. The doctor examined Jillian and determined that she did not have an ear infection. Seeing Richie sitting peacefully in his car seat, the doctor decided to check his ears as well (I have no idea why).  Turned out it was the quiet baby giving no indication of pain who had a raging ear infection.

You might think that the mother of a child like this would be able to keep such information in the front of her mind.  Not me. Mother of the Year.

Off to the shoe store we went. A salesgirl measured Richie’s feet and brought us a few pairs of sneakers in his size.  As she sat down to open the boxes, she casually mentioned that now that his feet were a size 4, he no longer had the option of shoes with Velcro closures.

She might as well have told us that he’d have to wear his underpants on his head. He sucked in his breath and put his hands over his ears. I stayed outwardly calm but was just as panicked on the inside.

My dear, one-in-a-million son, the one who charms me daily and touches my soul with the things he says, takes FOREVER to get his shoes on.  His shoes with the quick Velcro closures! 

Fine motor tasks are difficult for him. I’ve heard Autism advocates say that to empathize, I should try putting my shoes on while wearing oven mitts. And when I imagine doing that, it makes me want to slow down and be the most patient mother in the universe each time we leave the house. However…I am me, Type A and impatient, and we need to be at baseball practice in 20 minutes!

Richie and I both took a deep breath and resigned ourselves to lace-up sneakers. He tried on two pairs (tied by the sales girl), running around the store in each one.  He is really into The Flash right now, so each time he stopped, he would turn, flatten his hands & fingers, bend his elbows to 90-degree angles, cock one arm behind him, and then flash forward across the store. Except that his running is not exceptionally graceful.  Still, cutest Flash ever.

He chose the black sneakers, and the salesgirl took them to the counter to ring us up. I looked at Richie’s face and saw immediately that he was still thinking about the whole “no Velcro” crisis.

“Richie,” I asked, “are you worried about learning to tie your shoes?”

“Yes….it’s going to take me a long time.” He looked thoughtful for a minute, and I could see the wheels turning in his head.  I realize now that he was imagining an ideal world where they make Velcro-closure shoes in every size, so no man, woman, or child needs to feel stress. Where even his Mom could wear the Velcro shoes he loves so much.

“I know you can do it, Richie,” I said.  “You’ll practice and you’ll learn to tie your shoes.  It’s part of growing up. You’re getting bigger, they don’t make shoes with Velcro in your size, and it’s time to get sneakers with laces.”

He glanced down at my tidily-laced sneakers, then back up at my face. “Is that what happened to you?”

 

P.S. I later found some “hook and loop” (Velcro) closure shoes in Richie’s size on Zappos.com.  But I’m holding off for now.  I really do believe he can do this. And it’s time.

Richie Has a Way with Words, #201

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Yesterday we boarded a plane to fly home.  Richie was next to the window, Jillian had the middle seat, and I was on the aisle.  As we were settling in & buckling up, I heard him breathing strangely. The noises he was making were so subtle that no one around us could have possibly realized anything was wrong, but I could tell he was distressed.

“Richie,” I asked, “are you okay?”

He paused for a beat and then said very, very calmly and evenly, “Yes.  I just go crazy sometimes.”

Stimming at the Beach

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There are few sights more joyous, few things more all-encompassingly buoyant, than watching my son Richie at the beach.  This child, who works so hard everyday to “act normal” so he can fit in with his classmates, lets himself relax – and we let him relax – and the result is a display of wonder and elation like no other.

One of the things Autistic people like Richie battle daily is sensory overstimulation. When we eat out, I hear the shrieks of the baby at the next table as annoying; to Richie they are frighteningly shrill.  Fluorescent lights are, to the neurotypical (non-Autistic) person, well…lights.  But for Richie and others like him, the same lights flicker, distract, and annoy incessantly.  The list goes on and on, and I won’t pretend to know them all.

For many Autistic people, one way to cope with these overwhelming feelings and sensations is to engage in self-stimulatory behavior, or stimming.  For my Richie, this includes flapping his hands, spinning his body, contracting his muscles, and doing what our family calls “chattering:” releasing a verbal burst of words & sounds. In our everyday life, we discourage these behaviors.  If Richie wants to chatter or flap or spin, has to wait until he is at home in his room.  We have this rule because we believe it is in Richie’s best interest, both now and as an adult.  He has a lot to offer the world, but some people won’t be able to see past the flapping.  These behaviors also make him vulnerable to being mocked or bullied by classmates.  So the rule exists.  Some behaviors (like nose picking and others I’d rather not name) just belong in private.

And my hat is off to him; Richie works hard every day to keep these behaviors under control.  So if he comes home after a day of “holding it together” at school and needs to go in his room to flap and spin to decompress, more power to him.

There is something about the beach that brings out his stimming behaviors in spades.  And the difference is striking: whereas at home, the stimming seems to be a coping mechanism, at the beach, it seems to be a joy-filled celebration of all the stimulation that in other circumstances would be difficult to process: the pull of the waves, the push of the wind, the suck of the sand, the chill of the water.  He takes it all in, and his face is luminous.  His eyes twinkle.  His smile grows to bursting.  If Autism makes life harder for Richie 99% of the time, then this is the 1% to treasure.

So the rule is suspended.  Here under the big blue sky, we smile at each other and enjoy Richie enjoying himself.  He flaps, he chatters, he jumps, he paces.  On and on for hours.  And it is beautiful.

Adult Supervision Required

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We’re in Florida this week for Spring Break.  We spent yesterday on the beach, so today we’re setting up camp by the pool.  My kids love hotel pools, mostly because they are so often paired with the holy grail of relaxation for the elementary-school set: a hot tub.

My kids have both had a passion for hot tubs since an early age.  A few years ago, when my parents moved to a retirement community, Richie thought the most impressive thing about the whole place (other than the fact that there’s an elevator and a restaurant where you can get French fries any time you want) was the huge hot tub that sits right beside the indoor pool.

Twice a week, the pool hosts a family swim, and if our schedule allows AND Gram’s beyond-hectic-social-calendar-and-doctor-appointment-schedule does too, we go.  But much to Richie’s horror, the first time we walked in, he read the rules posted on the wall and learned that children under the age of 12 are not allowed in the hot tub.

Now you might ask, “What 8-year-old boy walks into a pool and reads the rules first thing?”  Only my Richie (and lots of other Autistic kids who find comfort and safety in rules and routines).  His love of rules is both endearing and maddening, depending on the day.

We hadn’t been to a family swim in over a year when one day, out of the blue, Richie said to me, “Four more months and I can get in the hot tub!”  This was such a non sequitur  that I had to ask him what he was talking about.  He reminded me of the rules at Gram’s hot tub, and the fact that he’d turn 12 in just four months.  The kid does not forget anything.

Back to today, in Florida, at the hotel pool.  We chose lounge chairs a few rows back from the pool but right beside the hot tub.  After I sunscreened both Richie and Jillian to within an inch of their lives, the kids walked towards the hot tub and I got comfortable in my chair.  I’d barely taken two breaths when Richie was back at my side, beckoning to me with his hand.  Once again, he’d read the rules.  “Come on, Mom,” he said, “I need some adult supervision.”

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Happy at last (while supervised)

The Best Kid in the Whole World

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I have two kids.  Could I pick a favorite?  You bet I could! But my answer would change from day to day, moment to moment.  Both of my kids are ridiculously fun in their own way, and each also has a unique way of making me want to hide in the bathroom with a box or two of Thin Mints.

Having one child is a gift.  Having more than one child is even giftier (see what I did there?) because that is how God shows you just how little control you have over what they do or say, over how they interpret what you tell them, over how closely they’re paying attention when you think they aren’t. I’m pretty sure that if I only had one child, I would be patting myself on the back way too often for what that child did well, and beating myself up even more often when things went sideways.

Because I have one child with Autism (Richie) and one who is neurotypical (Jillian), the differences between the two are even more pronounced.   And I find that when I have alone time with either of them, they are, in that moment, my favorite child.  Perhaps because I have such a low tolerance for chaos, I seem to be best when I’m with my kids one-on-one.  That’s when I’m best able to be in the moment with them, ignore the distractions, and appreciate them for being just who they are.

A few days ago, I picked up my daughter from school, and we had a very real and touching conversation in the van on the drive home.  When we pulled into the garage, I looked her in the eye and told her sincerely, “I think you are the best kid in the whole world.” She immediately hugged me across the center console and whispered warmly in my ear that I am the best mom in the whole world (which, of course, I am).  Best garage moment ever.

A few days afterwards, without intending to, I said the exact same thing to my son.  Jillian had already left for middle school, so Richie and I were alone eating breakfast.  We were discussing the newest villain he’d invented (a giant skeleton that throws skulls at the good guys).  When we talk about things like this, I can’t help but remember him as the 3-year-old who had no words of his own but would endlessly repeat dialogue from television shows. The 4-year-old who was so afraid of other little kids he could barely function in his preschool class.  The 5-year-old who had to be taught how to tell the difference between a man and a woman, and how to use the correct pronouns for each.  I get so overwhelmed at how hard he’s worked and the progress he’s made.  At that moment, I couldn’t help but put my arm around him, pull him to me, and tell him, “I think you are the best kid in the whole world.”

I looked at him for his reaction to my heartfelt words.  He looked me in the eye, nodded slightly, and said, “Yes.”