learning to live and love from a new perspective

Archive for June, 2014

Swim Suit Girl

Today we spent the day at the beach. It was perfect weather– sunny and warm, but with a refreshing breeze off the lake. We spent all afternoon jumping in the waves, building in the sand, and walking along the shore. Both of my kids had ear to ear grins when we played both classic games (“Mother May I?”) and new favorites (“Zombie Alligators”) in the waist-high water. As I sat in my beach chair underneath a wide, floral umbrella, I sighed with summer contentment.

Our beach-side crew included the following players: me, David, G, S, two grandparents, plus a number of older cousins who came and went throughout the afternoon. Plenty of company for everyone.

And yet.

The family that settled down next to us had a little girl in a pink polka-dot swim suit. The girl was small, but lively and full of non-stop energy. And every time she flitted past (chasing a butterfly, crashing through the waves, dragging a stick in the sand), G’s eyes followed her with a longing gaze.

After about an hour of this, I decided to take action.

Me: G, did you see a girl on the beach?

G: Yes, she’s right there.

Me: Would you like to talk to her?

G (gazing longingly): Yes.

Me: Should we go ask her a question?

G (still gazing, not moving): Yes.

Me: What do you think we should ask her?

G (cautious, but warming up to the idea): We could ask, “What’s your name?”

Me: That’s a great idea! What else could we ask her?

G: We could say, “How old are you?” and “Do you like swimming?”

Me: That sounds like a great conversation! I love your questions! Are you ready to try?

 

Over the course of this exchange, G has moved from cautious to excited. He had the desire to interact with little polka dot swimsuit girl, but no plan. Now he realizes that he has all the tools he needs. He is jumping and flapping his hands with anticipation. We walk over to where his soon-to-be-friend is digging a hole in the sand. We plunk ourselves down across from her.

 

Me: Hello! Is it okay if we join you?

Swim Suit Girl: Okay.

G (he’s looking at the sand, and not at her, and the words come out in one big stream, but he has a smile on his face that’s one of pure, cool confidence): What’s your name?

SSG: Alice.

G (smiling and flapping): Oh, your name is Alice. How old are you?

SSG: I’m six.

G (even more smiles. This is going better than expected): Oh, you’re six. That’s like me. I’m six years old too. Do you like to swim?

SSG: Yes.

As this conversation takes place, I am transported back in time. I remember when G was three years old. He was so unhappy around other kids. He would stand back and make sure there was a wide space between himself and the kids around him. He displayed no interest in joining in when other kids were playing and laughing. And then, when he was four, and he began to develop the desire to socialize, but didn’t have the language or pragmatic skills to do so. I remember the first time he came home from his social skills group and showed me the prized “conversation chain”– a short chain of different colored construction paper loops. Each color represented a different child in the group. G’s color that day was orange. When you participate in the conversation by making a comment or asking a question, your color gets added to the chain. G got to bring home the conversation chain because he had contributed the most comments/questions to the conversation. He proudly pointed to all of his orange loops.

Over two years of direct instruction, the “conversation chains” got longer. G’s contributions became more frequent and lengthier. He was developing the skills to participate in a conversation– in a familiar setting with lots of support and guidance.

Back to the present. The conversation has taken root, and there is a genuine back-and-forth taking place between G and Swim Suit Girl (who we now know is a six-year-old, kindergarten graduate named Alice).

I remove myself from their conversation, and go introduce myself to Alice’s mom. I let everyone know I’ll be returning to my beach chair, keeping an eye on things from under my floral umbrella. G and Alice barely look up from the sand-cake they are baking together.

To anyone watching, the interaction between G and Alice appears to be a typical exchange between two typical kids.

But I know better.

I know the hours and hours of speech therapy, social skills instruction, and behavioral therapy that have produced these skills. I know the hours and hours that have gone into developing goals, collecting data, and modifying instruction. And through every IEP meeting, play therapy session, and behavioral consult, I’ve had a vision. I could envision my child seeking out a playmate, starting a conversation, and joining in cooperative play with a new friend.

I sit in my beach chair, in the shade of my floral umbrella. I sigh as my vision become reality right in front of me.

 

 

 

 

 

 

 

 

Two Stories in One

PART ONE

We have a new system in our house where the kids earn “stars” for good behavior. When they remember to clear their plates from the table, use good manners, display patience or cooperation, they are rewarded with a star on their star chart. Each star is worth twenty-five cents. When they’ve accumulated a bunch of stars, they “cash in”. I cross the stars off the chart, and pay them quarters to put in their savings banks.

                                                 All this to say… we’ve been going through a lot of quarters in our house lately. The most recent Imagebatch of quarters isa shiny new roll, straight from the bank, featuring pictures of American landmarks. Since geography is an obsession for G, he’s beenfascinated by this particular group of coins. The other day, he was sitting at the table, sorting through his latest group of quarters. All of a sudden, he calls out, “I know this one! It’s from my Atlas!” He stood up with such force, he almost knocked over his chair. He ran to the living room, all the while repeating, “I know this one! I know this one!”Image

Moments later, he returned to the table, hauling the enormous, 250-oversized-page Atlas we have on loan from the library. He dropped the book on the table with a massive thud, and began thumbing through the pages, all the while squeaking excitedly, “I know this one!”

From where I sat across the room, the image on the quarter looked like New Jersey. G has been able to identify all fifty states by shape for well over a year (and all the countries in the world for over six months), so I wasn’t paying close attention. However, what happened next took my breath away.

ImageAfter flipping pages furiously for a few minutes, G stopped on a map of the Pacific Islands. He pointed at a tiny inset of the island of Guam. “I know this one!” he shouted. I came a little closer. Sure enough, the image on the quarter matched the image on the page. How did he do that?!? He hadn’t used the index or any knowledge of geography to find the map. He was relying on visual information only. Clearly, he had memorized every image in the entire Atlas, and was able to track down the picture of Guam when he encountered the image in another context. It was absolutely astonishing. As the enormity of this newfound discovery sunk it, I felt chills up and down my body.

 

PART TWO

Several hours later, we’re sitting at dinner. David has just come home, and I’m bursting to tell him about our son and his phenomenal brain. I launch into the story with great enthusiasm. G gets caught up in the telling, and leaves the table to retrieve the Atlas, so he can show dad the picture of Guam. He’s still chanting, “I know this one! I know this one!” as he proudly stabs the little image of Guam.

David is as awestruck as I was, and it feels great to share the excitement with someone who cares as much as me.

“Isn’t that AMAZING?” I crow. “That book is 250 pages long! He must have a photographic memory!”

Throughout the whole exchange, S had been sitting silently and observing. But that was the last straw. She burst into tears and fled into the living room, hurling herself on the couch in a ball of frustration and fury.

I felt like I was on a seesaw. At one moment, elated by the discovery of a truly unique gift of one child… only to come crashing down when confronted by the completely justified anger of the other.

I followed S into the living room, where she was now sitting with her arms crossed tightly. Her expression was furious, and she fixed me with a fuming glare. “You always make such a big deal about G!” she spat the words at me. “You never say stuff like that about me.”

Her accusation hit me full force. She was right. All throughout her childhood, S has met milestones effortlessly. She’s had big accomplishments (learning to ride a bike, performing in a gymnastics show, getting 100% on a spelling test, etc.)… but they’ve been the kind of accomplishments I know are coming. I’m proud of her, and I’m not stingy with praise. G has his share of everyday accomplishments as well, and I express my pride in generous compliments.

But S’s accusations were accurate. In the midst of the everyday accomplishments, G occasionally has these moments that knock my socks off. Sometimes, he’s been struggling so hard to do something and he finally does it and I just melt in the joy of FINALLY seeing him take that next step. Other times, he does something totally unexpected (like memorize an entire Atlas), and I just can’t contain my amazement because it’s something I’ve never seen any kid ever do.

But either way, it’s not fair to S. S is a completely amazing, totally unique, perceptive, smart, enthusiastic and talented girl. My job is to make sure she knows that.

I can do better.

 

 

 

Take Me Out to the Ballgame Two

So, you remember that post I wrote a couple of weeks ago about G playing T-Ball? You know how I talked about how I was camped out cheering from my spot near third base? What I said was mostly true. I did spend most of the game cheering from the sidelines.

But in the final inning of that game, the coach moved G from the outfield to first base. Woah… first base!! On the one hand, it was exciting to think that G was going to see some action. On the other hand, there is A LOT of action at first base.   Every single time the ball is hit, chances are that it’s going to find it’s way to first base.   I did the math. At the very beginning of the game, G was only paying attention to the batter about fifteen percent of the time. Now, ninety minutes later, G was only paying attention to the game about two percent of the time. Drawing figures in the dirt, twirling in circles, and chewing on his glove were far more interesting to G than watching the batter to see where he hits the ball.

So, I left the sidelines and went to hover near first base. I stayed there, about three feet away from G, for the entire inning. “Look at the batter, G!”, “Keep your eye on the ball, G!” and “If Jacob catches it, he’s going to throw it to you, G!”

Why was I standing there? On the surface, G’s behavior wasn’t too far outside the norm. Lots of kids were drawing in the dirt or spacing out. I didn’t see anyone else twirling or chewing their gloves… but I’m sure the other kids’ parents were aware of their kids’ idiosyncratic behavior that didn’t catch my eye.

But to me, even though G was doing really well in T-Ball, and his behavior and participation seemed to be meeting the coach’s expectations… I just couldn’t trust it. The G in my mind’s eye is the one who entered into physical therapy at nine months old because he didn’t seem to be learning to roll over, crawl, or sit up on his own. Walking, running, and climbing stairs were all skills that were mastered long after his peers had accomplished these milestones, and only through the repeated, guided instruction of a therapist. How could he possibly be learning to throw a ball, hit a pitch, and run the bases on his own?

At school, G receives support from an instructional aide. His teacher documents the tools and strategies used to break down information for G and help him focus. How could he possibly be picking up the subtleties of baseball on his own?

And yet, clearly, he’s doing it.

The day after my most-instrusive-sports-mom-ever performance, I decided I needed to reach out to G’s coach.

Here’s my message:

Hi Coach C,

I know we’re only mid-season…  but I really wanted to thank you for everything you are doing for the team!  It’s been a great experience for G to be part of the team.  You’ve been so attentive and enthusiastic… he just loves coming to T-Ball.

I’m sure you’ve noticed that G has trouble sustaining attention and breaking down multi-step directions.  He has autism, plus a speech/language delay.  You’ve been so great at breaking things down for him, and I want you to know I really appreciate your attentiveness.  I hope it wasn’t too intrusive that I was hovering at first base yesterday.  Please let me know if you’d prefer for me to stay in the cheering section 🙂

Again, thanks for making this such a positive experience!

Sincerely,

A  

I agonized over the wording. I fretted over whether sending the email was the right thing to do. I regretted not giving Coach C the information about G’s diagnosis earlier. And then I received his response. The end of the message was a compassionate and understanding suggestion that I leave the coaching to the coaches. But the part that made me cry is this:

Thank you for sharing about G’s personal challenges.   Not to dismiss in any way the reality of those hurdles, I want you to know that I see him as a very smart, fun loving kid with natural athletic ability who like most kids, is often excited but sometimes uncertain for a variety of reasons.  I’ve seen him throw the ball well, and i’ve seen him not try at all.  Did you see last night when he intuitively threw the ball at a base runner to get him out?  It was sharp, decisive, and done with accuracy.  Totally brilliant!  Just not allowed in baseball, Haha!  

What lucky star was shining down on us when the team assignments were made? I must have read that response about two dozen times.

Receiving Coach C’s message confirmed for me the source of my dilemma around disclosing G’s diagnosis. Yes, there are times when having the information (G has autism, he has a speech delay, he does best when information is broken down for him, etc.) can make or break a new situation. Telling a new teacher, or coach, or instructor about what has or hasn’t helped G in the past can often be crucial information.

But in this case, I think sharing that information with Coach C would have been undermining. G has never played T-Ball before. He’s never played ANY sport before. I had to go against every instinct I had just to sign him up for the team. If I had contacted the coach prior to the game and laid out all my worries on the table, it would have ruined it. My view of G and his abilities would have held him back.

I can’t begin to express how grateful I am to have someone with Coach C’s disposition and attitude coaching my son. Someone who has the ability to look beyond G’s misinterpretation of the rules, and see the athletic potential behind it.   Someone who can see G’s inconsistent effort and wants to figure out how to motivate him. Someone who enjoys my son as he is.  Someone who can teach me to see my son in a new way.  Someone who can allow me to let go of the image of all the things G couldn’t do in the past, and think about all the things he can do now.

Last night was the first game since this email exchange. For the entire game, I sat happily on my blanket. I felt comfortable that G was in good hands. I felt comfortable that I had communicated enough and that my role was to watch the game and cheer the players. I’m sure I’ll have many opportunities in the future to struggle with this dilemma– can G do this activity? What supports will he need? How much should I disclose and when? But for now… I will be grateful for this coach, this team, this moment.

Go, team!!

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