By  Cathy Jameson

Each night before the kids’ bedtime, we gather in Ronan’s room to say family prayers.  We go around individually with our own prayer requests.  The kids have had the same general prayer request for years:  for Ronan to be able to communicate.  Over time, that simple request has evolved.  They now have more specific intentions:  for Ronan to get his words back, for him to use his words, for him to be able to verbally communicate, and for him to have a meaningful verbal conversation with us.  Since Ronan had speech at one point in his life, we remain hopeful that it will one day return. 

Bedtime should be quiet time but it actually turns into the best time for the kids to communicate with their non-verbal brother.  Before the whole family has pig-piled into Ronan’s room to start prayers, he gets some one-on-one time with a sibling.  Sometimes it’s Fiona who joins him.  Other times it’s Willem.  Lots of times it’s his silly little sisters.  No matter who has a few quiet minutes before we gather at the end the day, I always hear one of the sibs ask Ronan to say something. 

Hey, Rone.  Can you say shapes?  Try it.  S-h-a-p-e-s…

I’ll sing the song but you say the word that’s missing. Ready?  I’m bringing home a baby bumble---

I found one of your favorite pages!  Say it with me, “And our fish said ‘No, no’…make that Cat go away...tell that Cat in the Hat you do not want to play…”

When he hears his favorite words being said, sung and signed by the siblings, Ronan’s eyes light up.  His interactions improve.  His verbal output attempts increase.  Squeals are squealed, and hope is restored. 

Using words or phrases from his favorite books, movies, or songs, instead of winding down for the day, everyone gets a little jacked up.  Despite how exhausted I am and how much I’d like their day to end so I can catch up on whatever I need to do, I never stop their activity.  Ronan feeds on the kids’ positive energy and communicates more in the ten minutes prior to bedtime than he’s done all day. 

When they finally do slow down for the day, the other kids gush all over that brother of theirs.  That isn’t the only time they show him any attention or affection, but it’s the time of the day that they give him all of their attention all at once.  My typical kids are active.  They love to play, run around, play, swing, play, do arts and crafts, and play.  It’s rare to see them quietly sitting still.  Ronan, on the other hand, is a couch potato.  He’d rather play Wii.  He’d rather watch YouTube videos.  He’d rather play a game on his iPad.  Trying to interact with him while he’s engaged in his preferred activities doesn’t work out so well.  We do curb screen time to make sure Ronan gets regular play time opportunities, but his underdeveloped social skills prevent him from wanting to join in on the playtime my other kids crave.  I know it’s hard for the siblings when Ronan ignores their requests to join them, but they don’t stop asking him to play.  The other night at the end of prayer time, though, I could tell that one of the siblings was getting a little frustrated.  The frustration was not toward Ronan but with why it’s sometimes hard for him to do things that she, the younger sister, can do so easily. 

Waiting until the other kids had skipped off to bed, Izzy crawled under the covers with Ronan.  I’m going to snuggle here with you, Ronan,” she said as she cozied up next to her brother.  Laying quietly next to Ronan under his favorite blankie, I could tell that she had something on her mind. 

“Mommy?” Izzy started. 

“Yes, sweetie?” I replied.

“Mommy, what if Ronan hadn’t ever gotten the flu shot?” Izzy asked.