My son was feeling left behind. What kids with autistic siblings want you to know.
My son has taught me that sometimes the greatest need isn’t right before our eyes. Sometimes the greatest need lies deep within the kid who seems just fine.
These kids, the amazing siblings to autistic children, are so full of understanding and grace, but that doesn’t mean there isn’t also pain.
Naturally a parent’s attention goes to the child struggling most, and just as naturally, the sibling of a disabled child will fall into place to accommodate those same needs while receiving subtle messaging over time that there may not be a lot of space for their own.
“We tend to forget that siblings go through these feelings and stages of grief,” Tara Reynolds, mom of two and a fierce autism advocate, shared with me on Monday evening.
Here’s what our boys, both siblings to autistic children, had to share.
Brothers who still need mothers
Reynolds has a son close in age to my own. Henry, 13, has a 6-year-old autistic brother, Robby. It’s just the two of them at home. Calvin, 12, is the second oldest of my four. My oldest, Lily, is autistic, diagnosed at age three. Henry and Calvin are some of the most amazing humans this world will ever know. Tara and I agree on that.
“Not a lot of children experience that type of growth at this level before age 13,” Reynolds shared, referring to how our children have had to watch their siblings struggle and make accommodations for them on their own.
“Henry never makes my husband, his brother or I feel guilty at all,” she shared. “He always is so supportive of what Robby might need in order to have a good day.”
Calvin, too, has worked hard to help his sister cope over the years. But as he’s gotten older, he’s been able to communicate that he doesn’t want to be left to figure life out when I only have space to act as a buffer between Lily and her hard day.
Calvin has taught me that sometimes the greatest need isn’t right before my eyes. Sometimes the greatest need lies deep within the kid who seems just fine.
We cannot forget them.
Hold me too
I have held my son many times the past year as he’s let out heavy cries. It’s been harder for him to keep big feelings inside post-divorce as he’s been given more tools to process hard things. As he’s processed some of the bigger things, topics like this have been easier for him to address.
We sat down this week to talk about what he may want to say about growing up alongside Lily.
“You just have to focus on her a lot,” he shared with me. “Like, if she’s stimming when I’m trying to show you something, you have to focus on that first,” Calvin said.
I asked him the biggest positive to his experience growing up with an autistic sibling, to which he said, “Well, you learn how (autistic people) feel.”
“But do you feel there needs to be more care around how you feel?” I asked him.
“Well, yeah,” he shared, “But I just hope that families like ours won’t give more care to kids like me over their autistic children because they feel their lives aren’t worth it.”
And that is just like Calvin to say.
‘I try to find the joy in the little things’
Before Henry’s autistic brother, Robby, was born, he was an only child for seven years, Reynolds shared with me.
“We did all the typical things that now seem like a lifetime ago,” she said. As Robby began to grow, he began to elope, and he has “sensory aversions to some environments,” Reynolds said. “It’s such a small thing, but when all of those missed restaurant family dinners, target runs and sleepovers add up, I feel like I’m not giving Henry everything he deserves in a childhood.”
Henry has learned, just as Calvin has, that his sibling’s needs “might come first the majority of the time.”
“And even though we try so hard for him not to feel like his aren’t as important, it can definitely feel like that to him sometimes,” Reynolds shared.
“Henry has seen his brother struggle during meltdowns or difficult situations that his body can’t control,” Reynolds said. “Processing those feelings isn’t easy on anyone, let alone a young child who has had to do this for years.”
Henry, just like Calvin, has seen some tough days, but he, just like Calvin, has seen a beautiful relationship unfold between he and his autistic sibling over the years.
Henry had a few words of his own to share for National Siblings Day.
“I try to find the joy in the little things with Rob,” he shared. “Like playing outside, jumping on the trampoline or swimming, because seeing his smile lights up my day.”
As for the hardest part, Henry longs to know his brother in a deeper way. “He knows how much it makes me happy that he’s happy. He shows me in his own way, but I wish I could talk to him,” he said.
“I just want you to pay attention to me,” Calvin told me at the end of our conversation Monday. And I think, if anything, this is what us parents need to hear.
When I weed through my day-to-day moments, I feel that I am a present mom, and he agrees, but also stresses that his pain comes from the moments when he is reaching, and I cannot choose him, because in that moment, I am acting as that buffer between Lily and her hard day.