It’s Time to Talk About the Emotional Load Parents of Kids with Special Needs Carry

Uggh. Just reading the title of this article weighs me down. Yet as a mom of a child with special needs, I feel it’s a topic we don’t talk about enough – the emotional load parents carry. 

Every time I give a workshop on How to Advocate for Kids with Special Needs, parents and caregivers talk about how they’re emotionally and physically drained. They share how exhausting it is managing appointments, going for assessments or therapies, advocating at school, dealing with their child’s emotional challenges, food sensitivities or sleeping patterns. The list goes on with no break in sight. 

I get it as I’m exhausted too. 

 Why aren’t we talking about the emotional load parents of neurodiverse children are carrying? Is it because we spend so much time and energy focusing on our children? Do we see it as a sense of duty or feel guilty about complaining? Or has it been a load we’ve carried for so long we aren’t even aware of its weight anymore?  

It’s time we not only acknowledge the emotional load but also look for way to lighten it for parents. After all, by taking some weight off our backs, it gives us more energy to support our incredible kids. 

So where do we start? While the starting point may differ for some, I feel the school environment is a good place to begin. 

Limited resources

All parents of diverse learners know there are limited resources to support these kids at school. The number of educational assistants (EA), resource teachers, speech language therapists, occupational therapists and other supports are often mere fraction of the staffing that are actually needed.

As a result, most kids aren’t properly supported. 

Too often it takes a parent advocating for their child to get basic supports. In my own child’s case, I spent a month writing emails, making phone calls and having Zoom meetings to get the proper EA support in place. The daily meltdowns at school, that disrupted not only his classroom, but others along the hallway, were not enough to get help. It was only through the hours I spent advocating (and documenting his struggles) that support was finally provided.

And guess what? This advocacy work piled another huge weight onto the emotional load I was already carrying.  

No work life balance

When we’re not advocating for our kids or managing a complex schedule of medical and therapy appointments, we are trying to do our paid job.

As a result, many of the phone calls, emails and calendar juggling is done on our “free time.” You know, that time other people take to eat lunch, call a friend or read a book.  

In talking to other parents, it’s not uncommon for one parent to either cut back their work hours or leave the workforce completely to be able to drive to the appointments, respond to phone calls from school and provide emotional support to their child. 

Unfortunately, this option isn’t available to single parents. These amazing parents are left carrying an additional emotional load that sometimes can bury them.  

Load lifters

I wish I could finish this article with some concrete advice on how to ease the emotional load for parents. If only for selfish reasons. 

While I don’t have the answers, what I do have is a request.

I would love it if educators, healthcare providers, employers, family members and friends not only recognize the emotional load we are carrying as we raise kids with special needs, but also give us some space.  

Give us space to get back to you when you ask us for something (one more thing on our plate) or want us to provide input. Don’t make comments when our child is late for school (again) because our mornings are a struggle to get out the door (often with begging involved). 

Realize we do care about our child, but in the moment, we are tired, overwhelmed or ready to cry. Our lack of conversation is us trying to keep it all together. 

Don’t wait until we ask for help. It’s not going to happen. Just because we aren’t reaching out to you, doesn’t mean we wouldn’t appreciate a phone call to see how we’re doing, a meal dropped off or an offer to watch our kids for an hour (after COVID).  

Having to express our struggles, ask for help or explain our situation only adds to our emotional load. Yes, I know you can’t read minds, but if a parent is raising a child with special needs, I can promise you they could use some patience, help and support. 

And for you parents reading this, know you aren’t alone. You are doing an incredible job. It’s okay to cry, eat chips, spend the morning in your pjs and binge on Netflix when your child is asleep. 

We all have to find our own ways to get through this journey. My hope is, overtime, you get the support you need to help ease your emotional load.