Another hopefully ever after post…because writing about these moments helps me get through some of the other stuff the world’s thrown at me. xo, Cat
When my non-verbal son needs me, he usually signs or types his requests. Ronan sometimes attempts speech with those requests but is unable to formulate words that the rest of us can understand. I encourage vocal output from him always hoping to hear a word or two. Now that the siblings home on summer vacation, they encourage that as well.
It’s a lot louder in the house with Ronan’s siblings home. Before they started their summer vacation, it was really quiet around here. That quiet has been replaced with other things. There’s constant playing. There’s constant wondering when the next meal will be served (even though the kids just ate). And there’s constant talking. The siblings talk. Boy, can they talk. A lot!
I am beyond grateful that my typical siblings do not struggle with speech issues like Ronan does, but ohmyword, the question asking they’ve done this summer is at an all-time high. With all the questions that I was asked one afternoon in particular last week, many that I had already answered in detail, I kinda sorta lost my cool. As a result, I instituted something that I’d warned the kids about when they’d reached a tipping point on another long, questions filled day: if you have something to ask Mommy, you need to write it down. I told them that if the question had been already been asked and answered, the kids should keep in mind that there was no guarantee that their written question would be answered.
The kids mulled over my request.
They were not amused.
But I got what I was looking for, which was a moment of silence.
Until I read some of their questions.
Fiona cannot wait for Ronan to catch up with her. Since that has yet happened, she, like me, wishes we could go back in time and do things differently. She remembers his typical baby days when things were easier. She also wants him to experience the independence she will have when she grows up and goes out into the real world. Like me, she’d go back in time and do things a little bit differently.
Willem, always the johnny jokester, wants to build, build, build. He also wants to make lots of money. Thanks in part for how much he does not enjoy doing household chores, he’s trying to figure out how to make millions the easy way. Since he’s got tons of ideas to help better every-day living tasks, including for kids with disabilities, I’m always encouraging him to write those ideas down and to also make models of them. Maybe his ideas, like the robot pants he tried to make, or the idea to make an Eating-Talking cookie to help non-verbal children regain their speech, will get the attention of someone who’ll be able to make the actual product. Whenever Ronan’s little brother makes his first million, I’m sure he’ll save a few dollars for himself but will put the majority of his profits back toward helping others.
Izzy also looks forward to helping people, especially people like Ronan. She knows it can be as simple as sharing a kind word, offering an extra pair of hands, or being ready to give a hug that can put a smile on someone’s face. She’s most in tune with Ronan when he’s having a tough day…and from the looks of it, she knows when I am, too.
Ronan’s youngest sister is still very attached to Mommy and Daddy (which I love!) and thinks she’ll make her mark closer to home. She’d rather stay with us when she grows up and has told me that she’ll continue to be Mommy’s helper after the big kids move out. If Ronan stays as delayed as he is now, I’ll happily take her help. She knows that Ronan could need a lot more assistance when he’s an adult. She asks questions about that – about Ronan, about his development, about his lack of development, and about his voice – one that she hardly ever hears but knows existed at one time. I’d love for her to hear that sweet voice of his. I’d love for all of us to hear it again actually.
I don’t always want to answer each of the questions my kids ask me, especially the ones they’ve already asked me (like, When’s dinner?) especially when I’ve already told them the answer (For the third time, we’ll eat at 6pm!). But when it comes to the questions they have about Ronan, I’ll always encourage them to ask what they need to ask.
After seeing the ones that they had for me the other day, I promised the kids that I’d do a better job of not letting their constant barrage of queries overwhelm me. I don’t ever want them to stop asking me to help them. I don’t ever want something so foolish as too many questions to be the source of my children’s discouragement.
I tell parents who seek me out for advice that no question is dumb. If they have questions, especially about vaccines injury or ones about autism and how to prevent it, they need to ask their questions until they are satisfied with the answer. That should go for my kids’ as well, no matter how many of questions they have and no matter how silly some of them may be.
Cathy Jameson is a Contributing Editor for Age of Autism.