This conversation started when Fiona, my 14-year old daughter, and I were driving home from grocery shopping on Friday afternoon. We continued to add to the conversation after we got home. I wanted to share it for today’s Sunday post. It’s dedicated to Ronan. He turns 13 tomorrow. Happy birthday, Ronan! May you continue to bring us hope, happiness, and joy.
Mom, can you believe Ronan’s birthday is on Monday?
I know. I really can’t believe it.
He’s going to be a teenager! I should tell him about things that will happen when he’s a teen.
What kind of things?
Like what to watch out for when he’s out of middle school. Like which people he should hang out with. Like which people he should not hang out with. I’d tell him about what’s trending and which things to follow.
You know that Ronan doesn’t understand a lot of that and that he’s not interested in the things you are. Your teenage years could be very different than what his might look like.
Yeah. I know. But I envision him getting better.
I do, too, honey. I always hope that he will get better.
When he’s better, Ronan will be able to do a lot more than he does now. I need to make sure he doesn’t get in trouble with his friends for talking too loudly during class. He needs to make sure to follow the rules. He’ll have to get used to new stuff like being able to adapt to changes in his environment and routine. I need to help him wear the “cool” clothes, too. He’ll need to get a new phone like an iPhone, not to play on like he does on our old phones but to use it to call or text people.
Well, Ronan can’t talk yet, so I guess you have faith that he someday will and that he’ll need a phone to tell people what’s on his mind.
Fiona, do you ever envision Ronan being able to do other typical teenage things?
Like what, Mom?
Like…being interested in girls, maybe? Or try out for sports?
Oh, yes! I would make Ronan to show me a picture of who he likes. I’d ask him to tell me about the girl. I would let him know which girls I think are nice and also warn him who not to hang out with.
As for sports, I want him to try to do soccer or baseball or bowling. If it’s soccer, I could help him since I’ve played it before. If it’s baseball, I’d ask my friend, Josh, to help. Josh played baseball before, and he knows Ronan pretty well. And I totally trust him with my brother. Ronan also loves bowling on the Wii. We should take him to the bowling alley more often. I know that he’d love that!
You know Ronan took notice of the bra and undies department at the store last week. I was shocked when I saw him do that. But then secretly, I was all kind of excited. It make me think that maybe parts of Ronan are typically developing.
It is kind of weird because…it’s Ronan. We’re not used to him being typical. We haven’t experienced what it will be like for him to like girls, or go through puberty, or mature… I’m excited for him to reach that stage. It tells me that he’s “growing up” despite his lack of abilities in other areas.
Ronan still does lack in other areas. That fact slows him down, not just physically but cognitively and developmentally. What are your thoughts or concerns about Ronan staying developmentally delayed as a teenager? Does that worry you at all?
Yes, it does. Ronan can do a lot of things like play, read, write, count, use sign language, and tell us when he needs something. But he can’t talk. He can’t speak for himself. He can’t go outside by himself or defend himself. He depends us, his family, for almost everything. As a teenager, I want Ronan to be able to laugh and talk with friends like I get to. He’s not a typical teenager yet, but I am going to help him enjoy his teenage years.
Do you think it will be easy to do that?
Yes. He’ll have fun with his family, his friends. He’ll have fun when he’s including in other people’s groups. I’ll make sure that happens because I want him to experience stuff just like I get to.
You have a lot of hope, and you remind me of me. Let me know if I can help make any of that happen.
Ronan gets to blow out his candles on Monday. What do you think he may wish for?
I think he’d wish to be normal…I mean…so that he can talk, and walk better, and play with toys again, and be able to write better and to read books closer to his age (not the Baby Einstein stuff).
If you could also make a wish when Ronan blows out his birthday candles, what would your wish be?
So that Ronan could be more typical and so that he could talk. I desperately want to hear him speak. I cannot wait to hear what might come out of his mouth.
If given the chance, Fiona would wish away the daily struggles that Ronan faces, and I wouldn’t stop her. As he enters his teenage years, Ronan remains mostly silent. Because of how severely affected Ronan is, his sibling have had to speak up for his needs at one time or another. All of them, Fiona especially, knows how important it is to advocate for the voiceless. It hasn’t been the easiest role for her, but she has taken it on with grace, with love, and with an immeasurable amount of hope. You’d think that hope would diminish over time, but it hasn’t. Ronan’s siblings feel a force that is different than the one that I as the parent experience. It is different, and I cannot wait to find out where it will lead them.
Cathy Jameson is a Contributing Editor for Age of Autism.
Fiona Jameson is a freshman in high school. She has shared sibling perspective articles with Age of Autism and with The Autism File Magazine. Fiona loves to play volleyball. She hopes to be a photographer, interior designer, baker, professional volleyball player, and a Mom when she grows up.