I Want To Live It With Her

Today was Becca’s first day back at music school. And just like that, we have entered another transition. Her music teacher from last year has moved on to bigger and better things, so this year means a new teacher, a new classroom dynamic, and another adjustment for Becca. We made it through the class with a little bit of struggle, but overall, it went well. She participated, she enjoyed herself, and by the end, I was feeling pretty good about how the morning went.

Then, after class, a parent asked me a question.

“What other programs do you have her enrolled in?”

Other programs.

I explained that, outside of her school program, which is fully sensory and tailored to her IEP, and the therapies she receives throughout the week, the only other structured program Becca is enrolled in is music school.

And the music program is amazing. It is specifically designed for children and adults with special needs, and Becca absolutely loves it. It gives her another opportunity for structured activity, interaction, music, movement, and fun outside of school.

So I thought that would be the end of the conversation. Instead, the parent looked at me and said, “Oh,”and then proceeded to tell me about all of the programs her son is enrolled in. Right after music class, she was taking him to horseback riding.

And listen, I am not against programs. I am not against activities. I am not against giving our children opportunities to discover things they enjoy and develop new skills. But I have also come to realize that there is something we don't talk about nearly enough when we talk about raising Autistic children: rest.

Not “rest” as in, Well, I guess we have nothing else scheduled today. I mean actual, intentional, protected rest.

There is a growing body of research and lived-experience literature around Autistic burnout and Autistic fatigue. Researchers have found that Autistic people can experience significant exhaustion, increased sensory sensitivity, and reduced functioning when the cumulative demands placed on them exceed their available resources. Research into burnout and recovery has also highlighted the importance of rest, reduced demands, sensory relief, solitude, and having space to recover.

And that matters to me as Becca’s mother. Because sometimes I think we have gotten so caught up in the idea of doing more that we have forgotten that children are allowed to simply exist.

Our children don't need every waking hour filled with something therapeutic. They don't need every interest turned into a lesson. They don't need every free afternoon turned into another appointment. They don't need to constantly be working toward the next milestone. And they certainly don't need to feel like they are falling behind because their parents didn't find enough programs.

There is so much pressure placed on parents of children with disabilities to keep searching: the next therapy, the next program, the next specialist, supplement, device, curriculum, treatment. The next thing that might finally be the thing that gets our child to speak, to catch up, to develop faster, to close the gap.

And I understand why parents do it. I really do. When you love your child deeply, you want to give them every opportunity. You want to make sure you aren't missing something. You want to know that you did everything you could. But somewhere along the way, our precious children can start becoming projects.

And I don't want Becca to be my project. She is my daughter. She is a whole person. She has interests and preferences and moods and favorite things and things she absolutely does not want to do. She has a personality. She has a sense of humor. She has ways of communicating with us that go far beyond spoken words. She has a life that is happening right now. Not someday when she reaches a particular milestone or learns a particular skill.

Right now.

So yes, we will absolutely enroll Becca in things that she enjoys. If she loves something, I want to find ways for her to experience more of it. That's why music school is so important to us. But we are not going to fill every available space in her calendar simply because we can. Because Becca needs downtime, too. She needs time to stim. She needs time to watch her favorite cartoons. She needs time to play. She needs time to decompress after school. She needs time when nobody is asking her to perform, respond, learn, transition, participate, communicate, or accomplish anything.

She needs to be able to just be Becca.

And honestly? So do I. Because I don't want to spend Becca's childhood simply managing her schedule. I want to live life with her. I want to take her to the arcade and watch her light up over the games. I want to take her to the playground and get to experience going to different places together. I want to laugh with her and watch her stim and hear the happy sounds she makes when she's excited.

I want to make memories that have absolutely nothing to do with whether she learned a new skill that day. Those things matter too. Maybe even more than we realize.

There is a particular kind of guilt that can creep into parenting a child with significant support needs. You can start wondering if you're doing enough. Maybe someone else's child is doing three therapies and two extracurricular activities and your child is only doing one. Maybe somebody found a program you haven't heard of. Maybe there's something you should be doing that you aren't.

And I have decided that I am not going to parent from that place. I would rather be intentional than busy. I would rather protect Becca's nervous system than protect myself from somebody else's judgment. I would rather give her an afternoon to unwind than fill it because an empty calendar makes somebody else think I'm not trying hard enough.

Because rest isn't the absence of progress; in many ways, it's part of the progress.

And yes - I know that is the unpopular opinion. But our children don't need to spend their entire childhood being worked on. They just need to be allowed to have a childhood.

Becca doesn't need me to spend every waking hour trying to find the next thing that will change her life. She needs a mother who will advocate for her, support her, give her opportunities, protect her when she needs protecting, and then sometimes put all of that aside and just live life with her.

So yes, we will continue to find things Becca loves. We will continue to support her development. We will continue to give her opportunities to learn and grow.

But we are also going to leave room for the arcade.

For cartoons.

For cuddles.

For stimming.

For laughter.

For absolutely nothing.

Because Becca is not my project. She's my daughter.