Hindsight is twenty-twenty, right? So dropping my daughter off at the door of her fourth grade classroom with this hasty explanation was not my best moment as a parent advocate. It went a little something like this:
“Hi. This is Mary. She has ADHD. You’re going to think she isn’t medicated, trust me, she is. She also has dyslexia...and a speech impediment. She writes like she reads like she talks. It’s all garbled. You won’t understand most of it, just ask her to repeat herself, she will, she’s used to it. She hates math. She’ll get a stomach ache and ask to go to the nurse everyday right around math time (we didn’t know she had dyscalculia back then, didn’t even know it was a thing). And a motor skills processing disorder (Dyspraxia, yep, that’s a thing too). She leans forward when she runs until she face plants. It’s totally normal for her. She’s used to that too. Oh, and she only sees out of one eye.”
I shook the teacher’s hand and left.
No one should have to feel alone in this unique existence. Learning about these disorders and how to advocate for our kids shouldn’t be any harder than it has to be.
I could fill a book with everything I didn’t know back then and a sequel with what I’ve learned raising six kids, five of which have ADHD, learning disabilities, and a host of other co-occurring conditions like anxiety, depression, insomnia, and OCD. How to be an effective parent advocate is one of those things.
Connect with other parents.
The internet makes connecting easy. I belong to several Facebook groups, some specific to the area I live, where parents share resources, offer support on particularly bad days, celebrate successes on good ones, and plan play dates for their like-minded kids. People freely ask questions, seek and share advice, post links to helpful articles and websites, and discuss classroom accommodations that work for them. More importantly, they reassure one another that they aren’t alone in their struggle to raise a child with needs above and beyond the norm.
If you can’t find anything like that in your area, consider joining a larger online community or starting your own group. You might be surprised to find friends and neighbors who’ve been struggling silently. I can’t tell you the number of times I’ve posted something on social media only to be approached privately for more information or help. It’s important that we network, for our own sense of connection and for others. No one should have to feel alone in this unique existence. Learning about these disorders and how to advocate for our kids shouldn’t be any harder than it has to be.
Get to know your rights.
It’s important to know and understand the rights of your child so that you can make sure their needs are being met, but educating yourself regarding special ed law can be confusing. I answer questions all the time from parents — even parents who’ve been at it for quite some time — trying to understand the difference between a 504 and an IEP (Individualized Education Plan), modifications versus accommodations, not to mention the specifics of what’s available or might work for their individual child. Luckily, there are some great resources out there that make it a little easier. They run the gamut from the basics covered in short articles and videos by Understood.org and other websites like it, to in depth articles and books offered on Wright’s Law’s website.
Years of experience and dealings with multiple school districts, school sites, and teachers has taught me a sad truth: not all schools or teachers are created equally. Over the years I’ve dealt with horrible schools, absolutely wonderful ones, and just about everything in between. The lesson I learned was simple: you can’t and shouldn’t count on the school to look out for your child’s needs. That’s your job. They have their own interests and, more often than not, won’t be forthcoming with what services are available unless you request them.
Remember you know your child best of all.
It’s hard to describe what it feels like to sit around a table with school administrators, teachers, and service providers. It can be overwhelming and intimidating. I know, at first, I felt like their education and experience made them experts, more qualified than me to decide what needed to happen. More than once I felt outnumbered and like every parenting decision I ever made was being judged — not to mention the pressure to bow to whatever they thought was best for my child.
I remember the student study team arguing with me over homework, flat out saying I should put my then seven year old on afternoon ADHD medication so he could focus and antidepressants for anxiety so he could do his homework. It was a tipping point for me. I stood up. Not that I hadn’t lodged complaints or argued points before, but that moment was defining in my path as a parent advocate.
I realized that while this collection of people may bring a lot to the table, no one knows my child like I do. The same is true for you. Trust that. Trust your instincts. You are the expert when it comes to your child. Don’t be afraid to speak up, to stand your ground, to share what works at and what doesn’t. Your input is valuable. The more the team knows about your child, the better it will function. Ultimately, you are the parent.
Create good working relationships with the adults in your child’s life.
It’s hard. Keeping my cool with people who obviously aren’t workable or don’t get it may be one of the most difficult things I’ve ever done. People who are long on opinion and short on knowledge. And while sometimes it’s been necessary to get angry and loud, most of the time I’ve found it more important to keep my cool. The people we advocate with are often in our children’s lives for extended periods of time. Teachers, coaches, caregivers, family and friends — we have to live and work with these people for a season, a year, or forever.
No matter how infuriating, I try to take the time to listen, to hear people out — because when they are done, I expect them to do the same for me. I actively try to look at the situation from their perspective, seek solutions that work for them and for my child — because in the long run, that’s what my child needs. They need the adults in their life to work together, to be a team. I try to be understanding, patient, and when all else fails I ply them with cookies. Not kidding, I do my best to bring some kind of goodie or treat to every meeting where my child’s needs are the center of the discussion, especially 504/IEP or student study team meetings.
Let your child see you advocate for them.
Over the years each one of my kids has learned how to advocate for themselves, and I’m sure it’s because they watched me speak up for them. In person, over the phone, in official meetings, in the doorways of classrooms, in school yards, and church buildings — wherever and whenever a conversation needed to take place, it happened.
In the process of openly having those conversations my children learned how to respectfully explain their mindset to others and articulate their needs in a calm, confident way. This unintended consequence has brought me great comfort as they get older and more independent. Now I know, even if I’m not there, they can communicate their needs and work toward a solution to meet them.
But something bigger and less tangible happens when your child sees you stand up for them, when they watch you help teachers, coaches, caregivers, even disagreeable family members understand their experience. We tell our children all the time that we love them, but when they watch us advocate for them, those words — which can get lost in long days of redirection and correction — become real and hold value. They see, in a very real way, how important they are to us.
Being willing to speak openly about their struggles and disorders also normalizes their experience. We show them that there is no shame in living with learning disabilities or mental health issues, that we are not ashamed of them. That is important to their self acceptance and worth. They’ll need that as they grow up and face a world where stigma surrounding these disorders is still a very real thing.
Being a parent advocate is hard, like every other aspect of raising kids with special needs. It’s so everyday. It can be awkward and unnerving, usually at the moments I feel the most unprepared and battle weary. But, when I look into the eyes of my children I see brilliance, I see creativity and goodness and I remember it’s worth it, all of it. Every bit of it good and bad is worth it.