There’s something about being the parent of a child with special needs that I don’t think everyone fully understands, and it’s something I’ve been thinking about a lot lately.
When your child comes home from school, you can’t always ask them how their day went and get a detailed answer. You might ask if they had a good day, if they had fun, or if they were a kind friend, and get a simple “yes” or “no.” Sometimes, you’re not even sure they fully understand what you’re asking. So you’re left wondering what their day actually looked like, what they learned, what made them happy, what they struggled with, and whether they had the support they needed.
You depend on the people who spend their days with your child to help fill in those gaps.
I recently attended Kay’s parent-teacher conference, and it left me with a lot to think about. I was told that Kay is doing pretty well, which is encouraging to hear. At the same time, I continue to receive updates, sometimes weekly or even every few days, about things she is struggling with, whether educationally or behaviorally.
And I want to be clear that I’m not expecting Kay to be perfect. She’s not always the best listener. She loves to move, she can be easily distracted, and sometimes she seeks attention in ways that aren’t necessarily appropriate. I know these are things she needs help learning to navigate, and I know that supporting her can take patience, consistency, and time.
But I also know what Kay is capable of.
I see what she can do at home. Her ABA team sees what she can do, too. So when I hear about the things she isn’t doing at school, I naturally find myself wondering what might be getting in the way and what we can do to help her succeed in that environment.
I understand that Kay is still new to this school. Her teachers and support staff are still getting to know her, learning what motivates her, what works for her, and how best to support her. I recognize that this is a learning process for everyone, and I don’t expect anyone to have all the answers overnight.
But I do think there’s a difference between identifying what a child struggles with and figuring out how to help them through it.
One example is the recommendation for adaptive PE due to gross motor deficits. When I asked for clarification about what that meant for Kay specifically, some of the concerns shared with me were that other children sometimes treat her like a doll, play with her hair, or try to pick her up, and that Kay sometimes runs off toward a nearby playground instead of participating in PE.
Those are things that absolutely deserve attention. Kay needs to be safe, and she deserves to have her boundaries respected by her peers. However, I don’t feel that those examples, on their own, demonstrate a gross motor deficit.
When we go to programs at GiGi’s Playhouse, I guide her to sit with her peers, participate in activities, and listen to stories. Sometimes she needs redirection. Sometimes she needs encouragement. Sometimes I have to help her get back on track. But I still give her the opportunity to try, because I know that learning to participate, follow directions, and engage with others are skills that develop with practice and support.
That’s what I want for her at school, too.
I’m not asking for Kay to be treated as though she has no challenges. I’m asking for her challenges to be met with curiosity, patience, and a willingness to find strategies that help her participate, rather than allowing those challenges to define what she can do
And I know this isn’t always easy. Teachers have classrooms full of children, limited time, and so many different needs to balance. I don’t take that lightly, and I’m not suggesting that every difficult moment has a simple solution.
But I think this is one of the harder parts of parenting a child with special needs: advocating for your child while trying to understand a world they can’t always fully explain to you. You’re taking in reports about their struggles, trying to make sense of what those struggles mean, and constantly asking yourself whether they’re being given the right support and opportunities to grow.
You want to trust that your child is being understood, even when they can’t always speak up for themselves. You want to know that the version of your child others see is not the only version they believe exists. And you want the people supporting them to see their potential, even on the days when that potential is harder to see.
I know Kay has things to learn. I know she has behaviors to work through and skills she still needs to develop. I’m not asking anyone to ignore those things.
I’m simply asking that we look at the whole child. Not just what she struggles with, but what she can do. Not just the moments when she needs redirection, but the moments when she succeeds. Not just the behaviors that make a day more difficult, but the opportunities we can create to help her learn something new.
Because our children deserve more than a list of the things they can’t do yet. They deserve people who are willing to help them figure out how they can.
And sometimes, as parents, we’re not asking for someone to have all the answers. We’re asking them to be willing to work with us to find them.