Advocating in a Broken System: The Burnout Faced by Parents of Kids with Disabilities

As a parent of children with disabilities, I have been feeling burnt out this year trying to advocate for my children and what they deserve. Advocating is exhausting. Last year I did a podcast with Rachel Thexton from Rachel Thexton Connects (you can listen here), and we started talking about how advocating for our kids is not only necessary, but completely exhausting, and how we don't talk about the toll that it takes on parents and relationships.

At This World's Ours Centre, I have the privilege of talking with parents about their children, their school experiences, their relationships, and how they are navigating all these aspects. This year I have seen more and more parents talk about the burnout they are facing trying to navigate a system that wasn't built for their kids. The reality is, I am feeling that same level of burnout in my own family, trying to navigate both the public and private school systems, maintain healthy relationships, and run a business.

This year, we pulled our own child out of private school as it was no longer meeting their needs and, honestly, starting to cause harm. We have been trying to move them into the public system, which in the past, hasn't worked well for them. We are in a new district and willing to take the risk, but it still comes with meetings, paperwork, and trying to ensure supports are in place before they arrive in September.

I feel that having been in the education system for a number of years has given me a slight advantage in navigating it, but I am still struggling. Some years are better than others. You get an amazing teacher or principal, and everything will go well for a year. But if this isn't the case, you can spend the entire school year dealing with a dysregulated child whose needs aren't being met. This was the first time in 11 years navigating the school system that I finally said I was done. I lost my will to fight with them anymore and decided for my own sanity and the well being of my child to just call it quits. My husband and I haven't even had time to determine what our alternate plan is for the remainder of the year, as finding time to chat about it hasn't fit into our schedule yet.

I am tired. I'm tired of fighting for my kids to have basic experiences as other kids their age at school. I'm tired of having to fight for my child just to be in the classroom, or to go on the field trip. There have been times where my child has been asked to stay home, as there wasn't enough support at school for them as there was a staffing shortage. While other parents check their child's report cards, I am still fighting to have my child in the classroom, let alone participating in academic activities at their level.

I am hearing more and more parents talk about homeschooling or looking into distributed learning as a solution to the public school system. They are working to create a program that will best fit their child and their learning needs, piecing together therapists and centers that can support them. The private school system offers some alternatives, but between finding one that matches your child's diagnosis and provides the right level of support, and being able to afford the school, it can also be a challenge to fit into this system.

As I say all of this, I want to highlight some of the positive things I have come across. I went for a meeting a few weeks ago at my daughter's elementary school. They had asked me to consult as a parent on a new playground that they are putting in. I initially went in thinking that I would have to bring up the benefits of creating accessible spaces and how it would benefit all kids. I was so worried that they would build a playground and add one or two accessible elements on the periphery of it. To my delight, the team started the meeting by saying they wanted the playground to be accessible in all areas and wanted suggestions on a variety of equipment that could meet multiple sensory needs. I left that meeting feeling so positive about how everyone came together and designed a space to meet our most vulnerable members, knowing that when we design for that in mind, we create spaces that benefit everyone.

The positive encounters give me hope that we are moving in the right direction. I wish these were the normal experiences that parents were having and that the negative ones were rare, but that isn't what I am seeing happening. Parents seem exhausted, and prioritizing self care is so necessary right now. I outline some of my self care strategies in two of my blog posts: Self Care: How can parents of neurodiverse kids take care of themselves? and My Journey in Making My Self-Care a Priority.

Tips for Supporting Positive Relationships when Advocating

I want to leave you with some tips that I have gathered over the years to support a positive relationship with schools.

• Take your time answering and drafting emails. Have a partner or a friend read through them to ensure the tone and the message is what you are trying to convey. I now have a strategy that I use for all emails when I know I am upset and need to advocate for my child. I start by writing everything I want to say - all of it. I don't edit it; I just get everything out that I wish I could say. Once I have done that, I often take a break and come back to it a bit later. I then edit it and keep only the pertinent details. I ensure it is respectful but direct. Clear communication is kind. I then get a friend, co-worker, or my partner to read through and ensure that it has everything I need and take out anything that isn't necessary.

  
  

• Take notes and keep records of who is completing what task. This will help later on if you need to follow up. You are also able to have an advocate attend meetings with you for support. It can be helpful, as they can also take notes so you can give your full attention in the meeting. Meeting with an advocate prior to any school meetings will also help you define what goals you want to discuss and ensure you have a clear agenda for the upcoming meeting. (Check out Navigating Neurodivergence if you are needing support)

  
  

• Build a strong home team and invite them to the school meetings. I try my best to ensure my home team (this can be your SLP, OT, Physio, Counselor, Behavior Consultant, etc) is invited to school meetings, especially IEP meetings. They are a good support to have in these meetings and may have suggestions or recommendations that can transfer from home to school or vice versa. I also ensure that they have consent to talk to the school team so that they can share ideas throughout the school year and ensure we are all aligned on our goals.

  
  

• Know who to go for when you need help. There is a chain of who you should reach out to when you are advocating for your child. It is typically recommended that you start with the teacher and school team first. This can be the Resource Teacher and/or the Classroom Teacher. If you can't resolve the issue, then the Principal in the next person you connect with. If you still need assistance, it is helpful to know who to contact at Learning Services, if your child is in public school. There is typically a District Principal for Inclusive Education that would be your contact. This information can be found online or you are always able to ask the school for who to connect with.

  
  

• Show gratitude. There are people who work with our children that go above and beyond, and it is important to show that we appreciate them. Whether it's a card or gift for the holidays, bringing goodies to an IEP meeting, or sending a quick thank-you email to a teacher, it goes a long way when we show how much we appreciate the people who spend their days with our kids. I like to think that it also buys me a little bit of grace and understanding when I have to approach them with a concern or issue.

  
  

• Be present and involved when possible. A few years ago, I noticed that school events and activities were not accessible for my child. I decided to join the PAC in an effort to bring awareness to being more inclusive and ensuring the money and supports were also being put towards sensory spaces and activities that would benefit all students. We were able to build a sensory room in my daughter's school, and I have noticed a huge shift when the PAC plans activities; they are asking if the event is inclusive and how they can ensure access to everyone.

Navigating systems that weren't built for our kids is an extremely challenging and overwhelming process. I have seen parents dedicate their lives to advocating and supporting their kids, and I have seen parents completely overwhelmed and complacent, tired of the fight. There is no judgement; this is incredibly hard work. I just want you to know that I see you, I have shared in similar struggles, and I hope that you have a village you can lean on for support.

I hope that some of this resonates with you, and if you ever need someone to connect with, I love speaking with parents about this journey. You can find me at This World's Ours Centre in Vancouver.

Take care,

Koryn