I noticed something the other day. I talk a lot. I talk more now than ever before. It’s not all the time that I’m a Chatty Cathy, but when I’m with Ronan, I don’t shut up. I am still somewhat reserved other times like when it comes to first-time meet and greets with new people that I get to meet. Other times, though, I’d rather sit at the back of the group, out of sight and nestled a corner or in the back row. I can’t do that when it comes to taking care of Ronan, though. That’s when I don’t mind sticking my neck out to be seen. Nor do I mind raising my voice so that I can be heard.
I realized how much I talk when I’m with Ronan when he and I started out last week to get to an appointment. I caught myself non-stop talking while I was holding Ronan’s hand. As we walked into the therapist’s waiting room I said, “Keep going, you’re almost there, step over the toys, careful…careful. Sit down, hold on, stay with Mommy. You did it!” After we sat, I stayed close to Ronan stroking his back while we waited for his name to be called.
The video playing on the television was a tad loud, as were the other patients and their siblings who were also in the waiting room, so I leaned in and quietly spoke to Ronan, “You like this movie? It’s called ‘Cars 2.’ Remember we saw it at the theatre with Daddy. Oh, look! That part made you laugh. Hey, it’s your turn now. Stand up, let’s go. Come on, watch your step. Down the hallway, here you go! Okay, bye now, Buddy. I’ll see you in a little bit. Kiss.”
How many times have I done that—given a play-by-play of exactly who, what, where, when and why? And did I really need to narrate the entire trip into the clinic and into the therapy room? Did Ronan care that I was observing and noting all sorts of things as we went? Did he see all of it as we went by? Did he hear it? Of course, he heard it. But, I wonder, does Ronan tune me out like he seems to tune out so many other things in his environment?
Why do I think I need to state every step and every action? I guess part of it is because I’ve had to remind Ronan several times about the same thing (walk OVER the toy, not ON it; and put your cup in the sink, NOT the trash can). Maybe I talk so much because I want a little bit of feedback. Ronan has some sort of understanding of what’s going on in the world, but, since he’s still just barely pre-verbal, the only reliable feedback I get is from me as I talk to myself.
Who knows, though, maybe with all this chit chat that I do for Ronan will have him one day spontaneously respond, “Ma, cut it out. Okay? I can do it by myself now. Watch me.”
I already knew that I rolled out a constant narrative other places. These situations are different than the daily action-packed descriptions that I just realized that I do. For the other times, I’m consciously aware of what I’m saying. In fact, if I don’t speak up I feel like it’s a disservice to Ronan. Like when I take Ronan to a social outing at a busy park or to a fun gathering for my typical children. Before a genuinely curious but terribly mannered kid has a chance to rudely stare or squawk at the strange-acting child (mine) I start a dialogue with Ronan, “Hey, Buddy. Do you want to go over there? (reaching for Ronan’s hand and walking him to the jungle gym). Hold my hand. Let’s go! Steady now. We’re almost there. You’ll love to climb that.” And off I scurry with Ronan—hoping to be far away from the gawking kid who, was never told that staring at other people is rude, and closer to more activities that Ronan is able to do at his own rate with success.
Of course, it could be a wonderful learning moment for the staring child to know why Ronan looks a little bit odd and acts a whole lot different than other kids, but I have enough teaching and coaching to do for my own child.
When I do have the chance to explain to curious children and adult bystanders (because even typical adults need a quick lesson on how to politely ask, “Hey, what’s wrong with your kid?!”), I start out with the simple truth. How long I can stick around and school them on mito disease plus vaccines injury equals a kid with special needs depends on Ronan’s activity level. More often than not, he’s on the go, go, go and idle chatter isn’t an option. Not wanting to let a learning moment slip away though, I quickly direct the kind soul, who really wanted to listen to Ronan’s story, to a few of my favorite websites (staring, of course with Age of Autism….). Then I run after my own curious kid who doesn’t stay in one place for very long and shout out, “Hey, Rone! Wait for me. Let’s go to the slide. I’ll help you climb the ladder.”
Speaking for Ronan has become second nature. I’d expect nothing less from myself now. With how much advocating that I’ve had to learn and have already done for him, it’s become part of life. At the grocery store, at restaurants, in familiar situations, and in new ones, I speak for Ronan.
Medical offices are another one of those places that I have to speak up. I speak quite clearly there, too. From the phone consults to the yearly exams, to the sit-down conversations with the head doctor to discussing administrative issues with the support staff and to interactions we have with every medical personnel we meet along the way, communicating Ronan’s needs is crucial. I have to tell them exactly what I think they need to know and do in order to be a part of Ronan’s team. I listen fervently to their response and to what they hope to do for Ronan and then hope that they do the same when it’s my turn to express my thoughts.
Having good communication with Ronan’s team helps. It allows me to better prepare for an appointment or for an exam be it with an existing provider or as we get started with a new one. The appointments with new providers can be hard as can filling out new forms and paperwork. Standard medical forms, and the very specific ones for each specialty Ronan sees, come with many questions. I can’t supply all of the typical questions with 100% input from Ronan, but I do the best that I can with the observations I’ve been able to make.
It sounded sort of goofy because Ronan physically could not answer me back, but at a recent medical appointment he had with a new provider I read the intake questions to myself and said some of the answers out loud as I wrote them:
Is patient in any pain?
Hey, Buddy? Are you feeling okay today? I know your teeth might hurt because you’ve got some cavities that need attention. I saw that your leg was dragging again a bit when you woke up this morning, too. How does it feel now? I know you struggled to have a bowel movement last night. Does any of that hurt, or are you so used to it and it’s just something you accept and expect?
Is patient experiencing any headaches?
Hmmm, he can’t tell me just yet, but Ronan shows me he might be in pain when he holds his head a certain way and when he squeezes his eyes shut. Ronan, do you have headaches? I really hope you don’t because I know how painful they can be.
Is patient sleeping well?
Hmmm, define “well.” Does that mean sleep through the night? Does that include one wake up that lasts 10 minutes, or does that include five wide-awake wake ups that happen over a 4-hour period? Does sleeping well mean waking up refreshed in the morning on your own? Or does it mean I tucked him in and that I didn’t hear him cry out or play with his toys or bang the walls with his feet? Or that I didn’t have to wake him from a deep sleep and drag him out of bed so that he’s not late for school? I’ll say he sleeps okay but has some interrupted sleep sometimes. Oh, and Ronan. You woke up at 2:30 am last night and never went back to sleep. Do you think you’re going to do that tonight? (Dude, please say no. Mommy is exhausted.)
Have you noticed any changes in normal behavior?
“Normal.” Ha! Please describe normal. Do you mean changes to what is normal for Ronan, or do you mean hey, he was normal as a baby, we knew no better and did a whole bunch of things that possibly compromised his immune system and other systems, but now he’s not normal? If that’s the case, then I think I need a few extra pieces of paper (front and back) to answer that question.
Are patient’s shots up to date?
Oh, fun! These guys must be of the ‘one size fits all’ vaccination mindset. Get your shot record, and fill up every little box on it! Clearly they haven’t heard about kids like you, Ronan. Mom’s too tired to fight this one, so I’ll write, Yep, as up-to-date as necessary, thankyouverymuch.
And, finally the last one:
Does patient have any concerns?
Gee, that’s a tough one to answer. If you mean is Ronan frustrated by his developmental delays, his seizure activity, his restless and/or sleepless nights, his boring, restricted diet, his lack of verbal communication skills and that he has a desire to do typical things but is hampered by all of the above, then I’d have to say that yes, he’s a tad concerned.
I am never too far from Ronan making sure what needs to be said is said. I stick close by him because he can’t speak up for himself. He needs me to be ready to stand up, to speak up, and to be prepared to do it all over again if we run into a snag.
When I can’t be close by him, or when someone else is with Ronan, he remains always in my thoughts. After I’ve dropped him off at school or to his therapist, I hope that I’ve given him the tools he needs to get through the day or the therapy session. His needs are always on my mind and on the tip of my tongue as I look for opportunities for Ronan. His needs, and my chance to vocalize them, are always a conversation or a pen stroke away. As I record and fill out paperwork, documents, and forms to get appropriate care and services, and as I choose to write about his life, I attempt to describe what I see and what I believe are his concerns.
Ronan is the main character of the story, a story that I promised to share. It’s been told so many times already, but I won’t stop telling it. I also won’t stop narrating what Ronan and I do together either. From the moment he wakes up and is greeted by my heartfelt, “Hey, handsome! Let’s get you dressed. Come on, help me out—arms, legs, feet, up you go. Oh! A hug. Thank you! Love you too, Buddy,” to the end of the day when we collapse into his bedtime routine, “Ronan, tonight I’m praying for you. What are you praying for? (Ronan signs his special intention.) Oh, you want to pray for Daddy and for your words. Me too, Buddy. Me, too,” I speak for Ronan. For every effort, from my well-planned thoughts to each carefully worded sentence I utter on his behalf, I’d like to think that Ronan appreciates the chatterbox that I’ve become.
Cathy Jameson is a Contributing Editor for Age of Autism.