I noticed something the other day. I talk a lot. I talk more now than 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 when it comes to first-time meet and greets with new friends and with people I get to meet. The inner geek in me will want to sit at the back of the group, out of sight nestled a corner or the back row. But, when it comes to taking care of Ronan I don’t mind sticking my neck out to be seen. Nor do I mind raising my voice to 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!” I stayed close to Ronan stroking his back as he sat in my lap 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 also in the waiting room. I 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?
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 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). Maybe I talk so much because I want a little bit of feedback that shows me Ronan has some sort of understanding of what’s going on in the world. But, since Ronan is still just barely pre-verbal, the only reliable feedback I get is from me talking to myself.
Who knows though; maybe with all this chit chat 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 in other situations. These are different than the daily action-packed descriptions I just realized I do. For these other events 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 with my typical children’s friends. Before a genuinely curious, but terribly mannered kid has a chance to rudely stare or squawk at the strange-acting kid (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.” 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 to be closer to more activities 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 he, but I have enough teaching and coaching to do for 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 I’m on the go, go, go and idle chatter isn’t an option with these folks. 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….) and run after my own curious kid who doesn’t stay in one place very long as I 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 because of how much advocating I’ve had to learn how to do for him. Medical offices are one of those places that I have to speak up quite clearly for Ronan. From the phone consults to the yearly exams, occasional procedures, and more, how I communicate to the head doctor on down through all their support staff as well as with every medical personnel we meet along the way 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 what they hope to do for Ronan and again express my thoughts. Once that communication is open and respected Ronan’s needs are a bit easier to obtain.
Preparing for an appointment or an exam, be it with a new provider or updating an existing one with current information can be hard. Documenting every noticeable change as well as the subtle ones Ronan expresses takes keen observation. Making sure I note and also articulate my suspicions or concerns is important. Standard medical forms and the very specific ones for each specialty Ronan sees come with many questions. Even though I feel I can’t supply some of the typical questions with 100% input from Ronan I do the best 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 for a new provider I read the intake questions to myself and said 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. 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 that 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 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 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, I didn’t hear him cry out or play with his toys or bang the walls with his feet and then had to drag him out of bed so 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 among 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, I’d have to say 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 because he can’t speak up for himself. He needs me be ready to stand up, speak up and then be prepared to do it all over again if we run into a snag. Ronan remains always in my thoughts when I can’t be close by. After I drop him off at school or therapy I’m hoping that I’ve given him the tools to overcome a struggle so that he can accomplish a new skill that will reported back to me. His needs are on the tip of my tongue as I look for an opportunity to find someone new or something useful as a supplement to the work Ronan must do to survive in this world. His concerns and my chance to aide him are a pen stroke away as I record and fill out documents for providers to treat many of his special needs. As I choose to write about his life, Ronan is the main character of the story I tell and promise to retell over and over again. I made that promise to him years ago.
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.” 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 I’ve become.
Cathy Jameson is a Contributing Editor for Age of Autism.