Helpful Words of Encouragement for Parents of an Autistic Child

I have a secret I don’t often say out loud, but I’m going to name it here. I feel totally overwhelmed… so much of the time.  

As the mother of a child with autism spectrum disorder and hearing loss, my daily life can feel like a ropes course of specialists, therapists, teachers, neighbors, friends, and family. They are all integral people we depend on as we manage the many shifting variables involved in getting my 5 year old son, Sean, the best care possible. Everyone needs to be informed as we coordinate on last-minute scheduling changes, hearing aide malfunctions, care updates, and the list goes on. And all of that careful planning only works when I’m preparing Sean as thoroughly as I can for every change and transition coming his way. 

The truth is I never feel like I’ve got a handle on all of it at once. I just keep reaching for the next handhold. I just keep moving through.

Sean has been receiving private speech therapy since he was 11 months old, and now that he’s in elementary school, those sessions seem to require a lot more coordination. We know we are lucky enough to have him paired with a therapist with advanced training for speech Apraxia but the only time slot left was on Friday mornings. 

During his first year at his new school he missed nearly every one of his PE days that coincidentally, were scheduled at that same time.  It was a judgment call my husband and I had to make: focus on his speech or provide for him the exact same experiences his peers were receiving.  

Beyond making that call, there are logistics to manage.  Sean has an educational team designed with therapists, his general education teacher, case manager, deaf and hard of hearing teacher; the list goes on. They all have to be notified so his team can plan accordingly. I also have to modify my work schedule to get him there.

Not to mention, I have to figure out how to get my neurotypical daughter to school on time because, of course, Sean’s session starts at the same time as her school day. 

So I focus on the next phone call, the next conversation, the next checkbox and try not to squint too hard at the massive list of what to-do to make it all happen. 

Somehow, it all gets done.

Encouragement for ASD parents who are stressed out:

All of the extra effort can feel really isolating, especially when I sometimes can’t help but imagine what parents of neurotypical children are doing at the end of their day. Maybe they’re having a date night, talking about work projects or upcoming family trips, catching up on each other’s news from the day, none of it having anything to do with IEP’s or shuffling therapy schedules.

I get discouraged sometimes when I think about all the free space I would have if my to-do list didn’t give me so much to do.

When I get overwhelmed, I know it’s not just me. My husband is dealing with all the same factors. My daughter is also taking in the stress, and I’m watching both of them to make sure they’ve got the support they need. So much of my life can feel like a constant check-in to make sure everyone is as close to ok at the same time as possible.

I know there’s a whole community of other parents of neurodiverse children who get it. If you’re one of them, and you came here in a moment of total overwhelm, here is what I tell myself:

1. Name your overwhelm and acknowledge what you’re feeling. It will remind you that you’ve been here before and you can do this.

2. Take a deep breath. That’s it. That’s what you can do.

3. Remember another time you felt this way and how you came out on the other side of it. It’s a moment, and it will pass.

4. Call in your coping strategies, the ones you put in place for moments just like this, the affirmations, tricks and tips that help you take action to get out of the stuck feeling that panic sometimes brings.

Encouragement for when nothing goes according to plan:

I depend on my coping strategies because I know without them I would be lost. One of my favorite strategies is to see the humor. It’s always there, somewhere. 

You know those private speech therapy sessions that require me to notify my son’s entire support team and rearrange my family’s work and school schedules? The same private speech therapy sessions that I spend the week preparing Sean for by reviewing the “plan for the day” and that have come to be a touchstone for him?

Last week we got all the way to the check-in counter, went through the weekly routine of name, birthday, and Covid protocol and found out…it was canceled.

Sean fell apart. The day fell apart. All of the planning and preparation and coordination that went into getting to that counter didn’t count for anything. I had to throw my head back and laugh because what else was there to do but cry.

It helps me to remember that every moment is teachable. Every moment I’m modeling something my son might need in the future. Being able to practice mindfulness when everything goes wrong isn’t a bad lesson to learn early. It’s a skill that will serve him as well as it has me. Here are some helpful words of encouragement for when things fall apart:

1. Tomorrow is a new day, and I’ll go into it with new information I’ve learned from what didn’t go right today.

2. Even if all I learned was what didn’t work, I learned something.

3. After all the planning and preparation, what I do have control over, always, is my response.

4. Laughter, no matter the disaster, helps reorient my perspective.

Encouragement for single parents of ASD children:

Another coping strategy that has worked for me over and over again is celebration. I try to recognize every milestone. No matter how infinitesimal its movement, I celebrate it. 

When Sean carries his own backpack from school to the car, I celebrate it.

When Sean makes a transition without throwing himself to the ground, I celebrate it.

When Sean walks all the way home without climbing something and throwing himself off of it, I celebrate that, too.

And I make sure I don’t celebrate alone.

It’s important to have cheerleaders all around you, people who keep your energy up when it starts to flag, people who understand how small steps make big changes over time. I recruit neighbors, friends, family, teachers, baristas, everyone in our community to be Sean’s cheerleaders and my own. I’ve got a whole cheer team behind us to help us celebrate.

If you go to bed at night and find yourself alone with the full weight of the day, this is for you:

1. Know your cheerleaders. Share with your cheerleaders so they can celebrate with you.

2. Celebrate every small moment, every milestone, every movement, acknowledge it and memorialize it because all of those moments are moving you and your child forward.

3. If something you did went against your norm, if you did it differently this time, recognize that and celebrate it. It’s no small thing to make a change.

4. Celebrate with your child. Don’t leave them out of your happiness. Model the celebration, share the joy of it, let the goodness sink in to carry you through future hard moments when you’ll need that happy energy to help you laugh and keep going.

I didn’t pull my strategies out of thin air. My parents modeled them from my earliest memories, so I’ve been practicing my whole life. 

I grew up with a sibling with Down syndrome, and I learned from my parents how to navigate his needs as a family unit. Sometimes, a lot of times actually, it was total chaos, but we always kept going. We persevered as a family. We laughed, we cried, we celebrated, and we kept going.

**If you’re feeling overwhelmed and look for a personal approach to helping your neurodivergent child manage challenging behavior, gain more life skills, or improve their communication, I’ve got you. I would love to get to know a bit about you and your family. Schedule a Discovery Call and we’ll see if parenting coaching is a good match for you.

Letting go of comparison.

Even growing up in a special needs family and spending my entire professional career working in the field of neurodiversity, I was in shock when we received Sean’s autism diagnosis. 

We knew he wasn’t meeting his typical milestones, but it was unclear whether that was related to his hearing impairment, speech impairment, or if it was something else entirely. We were anticipating some atypical outcomes but speechless when we were given the diagnosis of Autism Spectrum Disorder. 

In some ways I was prepared. In other ways, nothing could have prepared me. The overwhelm was instant. I forgot for a minute what I was capable of. 

I try not to compare, but it isn’t easy. As I thought through Sean’s first day of school, the parallels kept coming to me. Other parents were thinking about backpacks and school supplies, and I was making sure Sean’s teacher would be properly mic’d to Sean’s hearing aids and that Sean’s seat in class was positioned in proximity so he could get access to the instruction. Other parents were filling out PTA forms, and I was double and triple checking IEP accommodations.

We met the new teacher the Friday before the first day and she told me haplessly that she’s not sure she’ll be able to get the hang of wearing the mic. 

I let the frustration swell inside me and take a breath. I reminded myself that I’ve had 5 years to process what she’s had 5 minutes with. I remind myself to be patient and give it time to work itself out. This is a learning curve, and nobody starts at the summit.

Beginnings are hard, and transitions are slippery. Sometimes it’s one step forward, two steps back to one step forward to back to square one. But it’s all movement. It’s all learning our way up the mountain.

We learn. We keep going. There is no other way forward.

It can be pretty slow going, but that’s ok. Our first Thanksgiving as a family of 4 it took a full 4 hours to leave the house. But we left the house. We made the celebration.

You’re not alone.

Ultimately when I get overwhelmed, it isn’t the to-do list that does it, that’s just logistics, and I’m good at managing them. What really overwhelms me is this underlying question…

Am I doing enough? 

Am I doing too much? 

Am I finding the balance between those two?

I’d grown up watching my parents go from specialist to specialist, advocating tirelessly for my brother, and I knew the energy it would take for us to do the same. I knew we weren’t going to have standard date nights where we caught up on the day’s news, and we weren’t going to prep for back to school by getting Sean the right lunchbox and calling it done. There was a lot I didn’t know yet, but I had a sense of the scale of the road ahead. My husband, Chris, didn’t yet, which broke my heart to see.

But that day we still took a step forward. We got a little more information. And we took the next step after that, and we’ve kept moving through ever since.

When I get overwhelmed, when I get lost in comparison, when my energy starts to drag, I find the milestone, the smallest thing I can celebrate. I reach for my cheerleaders and share it with them. 

And I share it with Sean, too, so he learns that he is never alone, that he is surrounded. 

And you’re not alone either. We’re right there with you, too.

More resources on the blog