Finding Your Community: The Journey of a Special Education Mom

By Sara Rivera, President and Founder of the Dysart Special Education Parent Teacher Student Association

Like any parent, we want our kids with disabilities to be able to have the best life that they can, but we often face more challenges than a typical parent does. It can be hard to admit that because I don’t want anyone to look at my life and think that I am burdened by my son’s disability. But not acknowledging those struggles would be a disservice to all that he has overcome.

One of the biggest challenges for parents in this situation is the isolation that families can feel when they have a child with a disability, and/or that is identified as qualifying for an IEP or 504 plan. It singles them out from the life they had envisioned as well as the childhood they had envisioned for their children.

There’s also an enormous learning curve. When parents first receive a diagnosis for their child:

• They need to learn how to help their child best with their day-to-day needs;

• They have to learn what their child’s diagnosis means for childhood, adolescence, and adulthood;

• They have to learn how to navigate a very complex system in public schools to get evaluations and IEPs;

• They need to learn all the jargon that goes along with IEPs and similar accommodations.

My journey started with doing a lot of online research about my son’s diagnosis and how best I could help him. I also had to find my identity as a parent to a child with a disability. Was I going to be a parent who wanted to “fix” their child and was constantly searching for a cure, or was I going to be a parent that accepted their child for exactly who they are?

When my son was first diagnosed, we lived in Montana, and there was little to no support for parents like me. I joined a few Facebook groups, but I still felt alone and isolated when learning about autism and how I could help my son thrive.

When we moved to Missouri, I was fortunate to stumble upon the charter meeting for the Columbia special education PTSA. I ended up being a part of a closeknit group of moms who really wanted to change the world by providing community, support, and advocacy assistance and to make the school system there do better for our kids than they were doing. Through that group, I learned to trust myself and my instincts, especially those that insisted my views of my child were not wrong – he is intelligent, he is worth the effort to find the way that he learns and he is deserving of inclusion in all forms. He’s such a cool kid!

When I came to Arizona, I wanted that same community and support for myself and my son, not the isolation and loneliness I’d felt in Montana. I also wanted this for the families and students in my new city. That’s why I worked to get a special education PTSA for Dysart started in July 2021.

Another challenge that parents face when their child receives a disability diagnosis is feeling like they’ve been tossed into the ocean without first knowing how to swim. In other words, feeling overwhelmed and unprepared when it comes to your child’s educational needs. You have to learn how the school system works, how it’s set up to work when it comes to IEPs and 504s, and how to prepare for and then analyze evaluations and reevaluations.

There is a deluge of information that you never thought you would need to know just to get your kids through school, and you’re at a disadvantage in that first IEP meeting because you’re still reeling from the new normal you find yourself in. For example, when my son was diagnosed with autism, I didn’t really know what that meant for us or him. A week after his diagnosis I found myself in his first IEP meeting. I was homeschooled, and then I went to a private school, so public school was a completely foreign realm to me, let alone learning about and asking for all the accommodations necessary for my son.

What helps with that is, again, a community of parents who know exactly what you’re going through. They can explain confusing jargon or concepts and provide insight into how the school’s accommodation system works. There is so much that I wished I’d known back then. Yet another challenge is learning to navigate your emotions and responses when advocating for your child. Sometimes it’s all too easy to stay in perpetual “mama bear” mode, and forgetting to start your advocacy from a view point of grace.

Don’t get me wrong, sometimes “mama bear” mode can be necessary, if you’re dealing with a school system breaking the law or refusing reasonable accommodation for your children. However, there can’t be cooperation without mutual trust. There have been times especially early on in our journey that I trusted school staff because I didn’t trust myself to know my son’s needs and that trust proved to be misplaced. But I’m glad that I still come to the table from a place of trust, including in myself, and leave “mama bear” for when it is needed and not as a default.

The issue is that schools can’t always do what’s best for my son because they have to do what’s best for the school. Whether it’s due to limited resources or short staffing. If I’d approached every encounter in mama bear mode, claws out and teeth showing, it would have been difficult for all of us to continue forward in cooperation.

There will be times when they drop the ball, or you drop the ball, and the best thing we can do is to give each other grace and recognize that we’re only ordinary humans who make mistakes. What’s important to keep in mind is that we do have the best interests in mind for our child, and, most of the time, so do the school personnel, and starting from that assumption on both sides will make the road ahead that much smoother.

There are going to be times when there are disagreements, sometimes significant disagreements, and it’s difficult to learn how to discern when you need to push harder and when you need to let it go. It’s a tough place to be in, and the discernment is something that comes with time, but it’s also enormously helpful to have a community of people that you can rely on to discuss matters with and get their neutral perspective – especially if they’ve had similar experiences.

Finally, what helps parents like me face our challenges most is when we get support from families whose kids don’t need accommodations. We feel supported when they join with us in helping our kids participate fully in school activities.

For example, if your child’s classroom has a child with disabilities, and during an event like Meet the Teacher Night the teacher apologizes to you for the noise or similar, you can respond, “You know, I really like that the classroom is really diverse and it helps my student when there’s more diversity in the classroom.”

When you do this, you let everybody around you know that you enjoy having an inclusive, diverse classroom, because it really does benefit everybody.

If you would like to join the Dysart Special Education PTSA you can find them on Facebook or their website www.dysartseptsa.org.