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Bethany Hang Out

Catholic contemplative life and devotion

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autism

The Rocky Road to Dublin : hanging out with Sean

Sean and I are in the car eating cherry slushies with spoons. He is in the back seat and I am sitting sideways in the front so I can see him.  “Are you happy?” I ask him. He smiles very big, and says, “YES!” “Me too,” I say. “I’m pretty happy too.” 

When I pick him up at the end of his day there are a variety of things he might say as he is handed into the car by his teacher. One of my favorites is, “Hello boys and girls.” That one cracks me up. He is a funny kid. 

For a 13 year old he is pretty quiet most of the time. He has several voices though. Most often he speaks either in a bright staccato reminiscent of a character in an old cartoon, or in a soft, quiet voice he usually uses when he has more to say. When he speaks low I think it is because he is a little nervous about saying more so he talks really fast. “I’dliketolistentorockyroadtodublinplease.” This he says many times each day because The Rocky Road to Dublin is his favorite song. (He especially likes the version by the High Kings). Gaelic music is his jam. It’s all we listen to when we are together. It’s a good thing I like Irish music too. 

He doesn’t particularly like me playing with his toys- which is a bummer because he has a lot of fun toys. His parents make sure he has exactly the right things that are fun and also good for him- lots of learning and sensory toys. He likes me to be with him when he plays but not for me to touch anything. Sometimes I sneak a piece of that cool slime putty but I give it back as soon as he notices. Eventually he lets me play too.  I’m also a fan of his extensive rubber ducky collection. He spends a lot of time with those guys. Which means I do too of course. It’s a regular rubber ducky party sometimes. 

Don’t be fooled by the wide, dreamy blue eyed gaze, the sweet, soft face and fuzzy head of this boy, all of which give him a hazy angelic look as if he is in another world.  He can seem that he is thinking of something else or as if he isn’t aware of his surroundings. However, Sean is taking in everything. 

His mom is a singer and she has been working on a new song lately. She is singing it in the kitchen and she pauses while she looks for something. In the pause Sean supplies the next phrase. She sings the next one. He sings the next one after that. He knows the whole song! We’re impressed. He has certainly been listening when his mom was practicing. 

Sean is pretty calm and quiet most of the time- until he isn’t. His feelings are apparently pretty intense at times. To those of us on the outside the intensity appears sudden. He makes a heart rending announcement. “Oh no! Oh no! SAD! SAD!” We tell him we are sorry he is sad and ask him to take a deep breath. He is very good about this. He always does it when we ask him to and it always helps.  I have loved seeing how understanding and compassionate his parents are when this happens. They are very good at encouraging, guiding and bringing out the best out in him. 

Once he and I were at a playground and a little boy asked, “Why can’t he talk?” I said that he can, he just doesn’t most of the time. Then the boy asked, “Why do you follow him around like that?” Sean took off running right then. I  said , “Because he does that!” And I took off  after him. I found him hiding behind a column looking upset. “Are you upset?” “Yes.” “Is it because of what that little boy asked?” “Yes.” “Sean there is nothing wrong with you at all. You’re perfect just the way you are, OK?” “OK.” 

On the way home I played him “The Rocky Road to Dublin,” as many times as he wanted. 

Sean is  loving and affectionate. He can be very cuddly especially when he is in the mood which is usually later in the day when he’s tired. He likes to get in his dad’s lap or in his arm chair with him, hug him and rub cheeks with him. They’re very adorable. 

He likes to lay in my lap or embrace me and say, “Friends!” Which I love. He likes to stand in the kitchen with his mom touching foreheads and talking with her. 

Sean seems really secure and to know he is valued.  He  seems to understand his special place in his family. He is lucky to have his grandparents nearby.  He loves them and asks about them all the time. He has a lot of support. Families like this are great to see and an honor to work with. 

Sean laughs a lot. Sometimes it’s the kind of laugh that makes him go running through the house like a madman, as if he can’t contain his joy and enthusiasm. Whatever is going on in his mind, it’s hilarious to him.

He has his little jokes with us. He might say, in his idiosyncratic sing- song, “seventy has five letters.” I say, “ nuh uh!” His mom says “how many is it really?” After a while he admits it has seven letters. Which he knows very well. He is quite amused by this. As for me I had to count the letters on my fingers to make sure. 

Sometimes we are playing quietly or watching something and he says,” tickle me.” He may or may not laugh when I do but I have told him if I am going to go to the trouble I expect laughter.  He obliges dramatically with satisfying shrieks. 

Another common request from Sean is “high five.” Or he may say “H-5!” Sometimes he does want to high five. Other times what he really wants is to hold hands. So we do. 

“Repeat after me,” I say, and he does, a word at a time. “I. AM. A. CUTIE PIE!” 

Sometimes I ask, “Who’s a cutie pie?” He says, “SEAN!” “That’s right.” And he really is. 

Sometimes he sits in the hammock and I sit in the swing and we listen to Irish music and are content. These are some of the nicest moments in my day- he and I swinging, listening to music and smiling at each other. 

We are playing with a bunch of rubbery letters of the alphabet and Sean suddenly disappears. I’m surprised. I look down at the counter and he has spelled out a message in colorful plastic: BYE. 

The amazing Zane

Photo by abdul7amid alfadhly on Pexels.com

I tend to think of Zane in shades of color. The moods and thoughts that cross his face are less flickers of change than slight alterations in tint during most of the day. And then there will come a burst of laughter and squeals of hilarity as well as a series of short jumps from him- maybe from a joyful memory or some private joke. Or maybe he thought of something he looks forward to. Whatever it is he isn’t going to tell me; not because he is a teenager and I am an annoying adult he mostly gives the side eye to, but because Zane does not speak in words. Occasionally he becomes suddenly sad and will even weep and seek the affection he usually spurns but I can’t know why usually. All of these triggers of joy and sadness tend to be internal and inaccessible to me. I do know that if a book we are reading has a particularly heart wrenching passage it makes him wilt in sorrow and then he walks away and doesn’t want to read that book anymore. His feelings can be quite deep and all encompassing though I can lose sight of that in the comparative serenity his facial expression displays most of the time.

Zane can linger a long time looking intently at something that seems uninteresting to those of us who are more “neurotypical.” I imagine he sees patterns or details we don’t see. His favorite place to be is outside in the backyard in his “spot.” Zane feels best in nature. So most of our time together is outdoors. He hardly ever cares what kind of weather it is either. He just wants to be in it. Its not as if he isn’t paying attention to the weather although I think sometimes he isn’t. Nor do I think it is simply low body awareness. Maybe nature is his friend. Maybe he wants to take part in life that way as often as he can. It took me along time to realize that the melodic squeals he makes are an imitation of a backyard bird call we often hear. He amazes me all the time.

He has a little trouble with his gait but he still loves to lope along on long walks and he can really walk fast, especially if I play Cat Stevens on my phone. That is our walking music usually. Sometimes he stops to examine the leaves of a Dwarf Yaupon or a Crepe Myrtle along the way. Nature is his buddy and he’s checking in.

Another way he takes part in life is through love in his family. Zane’s parents and his two older brothers talk to him respectfully and care for him in a matter-of-fact way. Something he loves and is always very happy about is when everybody is home. He loves having his family around him. He loves them all and his occasional outbursts of affection with them are touching. He is loved and supported at home. He goes wherever he wants to go and eats what he wants to when he wants to. His hands don’t work very well so he needs help with this though he is able to feed himself. He likes to gently take my wrist and set my hand on the food he wants me to make for him.

Zane has a sense of humor. His Dad was late to dinner one day and his mom was joking with Zane, “Well it was nice knowing Daddy. We’ll miss him but that’s how it goes. Guess he can move in with Billy.” Zane screeched with laughter. When his dad was finally at the door, Zane put his fingers in his ears in preparation.

He can answer yes no questions. We put our hands out and show which hand is yes and which hand is no. “Do you want Zaxby’s for dinner? Yes or no.” When it comes to Zaxby’s he will always slap the yes hand. Usually he will add “Ah” which for him communicates yes as well, perhaps for emphasis.

Something Zane loves to do is shake the bundle of colorful ribbons he always carries, look at it and put his mouth on it. This activity is called “stimming” and he enjoys it very much. Now and then we go to his ribbon closet and cut new ribbon of the color he is in the mood for.

His other great love is his stuffed friend, “Donkey.” Apparently that guy is hilarious. Sometimes they joke and party late into the night and Zane’s parents can’t sleep.

Zane enjoys music and it seems to be a great comfort to him. He likes opera and classical and country. He does not like Nina Hagen. His greatest love is The Wiggles.

His mother gave me a stack of books to read when I first started working with Zane to help me understand him. Some of them had some great ideas for communication and learning. I used to try these ideas out back then. Yes he can spell words on a letter board. But he wouldn’t for me. He would just throw it. He would choose the right answer when I tried a certain technique with him. His cooperation was grudging and I noticed he seemed to hate it when I said, “good job.” It was as if he were saying, “Lady I’ve been at school all day. This is not the relationship I want to have with you.”

One of the books his mother gave me when I was hired was called The Reason I Jump by Naoki Higashida. Naoki is a nonverbal and autistic teen just as Zane is. He wrote his book using some of the techniques I had read about using a special computer set up for his letter board style of spelling out words. The young man writes about what it is like in his interior world and why he does the things he does, and what he wishes people would understand about him. It was beautiful; mind and heart opening to read. It occurred to me that since we had been reading aloud Zane would possibly identify with it. So we began reading it. The result was electric.

He listened intently and wouldn’t let me stop reading it. He would bring his head closer to me to listen more intently. We read it all day and during my entire shift the next day. At times he would uncharacteristically grab my shoulders or hands and stare at me with full eye contact with extreme excitement. His parents came out to see him and talk about it. We were all almost crying. It was as if Zane were exclaiming, “This is me! Please listen this is me!”

It was quite a moment, and one I know I will always remember.

When Zane is tired he puts his head on my shoulder and becomes unusually affectionate, even hugging me.

“Zane are we good friends?” I ask. He says, “Ah!” and he lets me hug him.

*Author’s note: I obtained permission from Zane’s parents to publish this piece.

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