What I Wish I Knew: A Parent’s Lessons Learned About Raising a Child With a Learning Disability

Last month, my daughter graduated from elementary school. It’s an incredible milestone—one we celebrated with so much pride and gratitude. But as I watched her walk across that stage, I couldn’t help but reflect on how different her elementary experience could have been if I’d known then what I know now about special education and advocating for a child with a learning disability.

If you’re a parent just starting this journey, I hope these lessons help you feel less alone and more prepared. Here are five things I wish I knew before my daughter, who has dyslexia, started school.

1. Trust Your Instincts—You Don’t Need Permission to Ask for Help

When my daughter was four, I noticed things about her learning that didn’t feel right, but every time I asked her teachers, they told me not to worry. I wish I’d trusted my instincts sooner instead of waiting until first grade to ask for testing. If you have concerns, you don’t need a teacher’s permission—you can request an evaluation yourself. In Massachusetts, you can email your child’s principal or the district’s special education office to request an evaluation in writing. The school must send you a consent form within five school days. Once you sign, they have 30 school days to complete the testing and must hold a Team meeting within 45 school days to review the results and decide if your child is eligible for services. Request an evaluation—it doesn’t hurt to check. Even if the results show your child doesn’t qualify for special education services, they may still be eligible for other supports and interventions through general education. Trust your gut—no one knows your child better than you do.

2. Monitor Services Closely—Don’t Assume They’re Always Happening

One thing I wish I had done sooner was track whether my daughter was actually getting the services listed in her IEP. For example, she was supposed to receive reading instruction four days a week for 45 minutes. But during one stretch between December and February, she missed many days of services. For weeks, I hesitated to reach out because I didn’t want to be seen as a “problem parent.” When I finally requested a record of her pull-out services, I learned she’d missed 20 sessions in just 10 weeks. Missing these services set her back, and I still carry guilt for not speaking up sooner. If I could do it over, I’d keep a calendar on the fridge with her service schedule and ask her every day if she got her services. If she missed more than two sessions in a month, I’d check in right away.

3. If Services Are Missed, Your Child May Be Entitled to Compensatory Services—But You Have to Ask

This  lesson I learned late. If your child’s special education services aren’t delivered as outlined in their IEP, they may be entitled to compensatory services to make up for lost time. But the school won’t automatically offer this—you have to request it, ideally in writing. The IEP team will meet to decide what’s appropriate. I wish I’d known this sooner because I could have been requesting these services all through her elementary school experience. For me it also would have acted as an incentive to track her service in the first place.

4. Know Your “Stay Put” Rights—You Can Say “No” to Unwanted Changes

At one point, the school tried to remove services from my daughter’s IEP that I knew she still needed. I leaned then that I had the right to reject those changes. In Massachusetts, parents have what’s called “stay put” rights. If the school tries to change or remove services and you disagree, you can reject the proposed IEP—either in whole or in part—and clearly state your intention to maintain the current placement and services. Provide this in writing. This means the last agreed-upon IEP stays in place while you work through the disagreement. Knowing this helped me protect my daughter’s services during times when the school wanted to scale them back.

5. You’re Not Alone—Find Your People

This might be the most important lesson of all. For a long time, I thought I had to figure this out on my own. I didn’t know there were people who had walked this road before me—parents who could answer my questions, share sample letters, tell me what to expect at meetings, or just listen when I needed to vent.

Today, I know better. There are so many places to turn for help. In Massachusetts alone, we have the Federation for Children with Special Needs, the Chris Walsh Center for Educators and Families at Framingham State University, and Decoding Dyslexia Massachusetts. Many towns have their own Special Education Parent Advisory Councils (SEPACs)—volunteer groups of parents who meet regularly to support each other and advocate for better services in their districts.

If you’re feeling alone, please don’t stay silent. Reach out to your local SEPAC. Join a Facebook group. Call a parent training center. Talk to another parent at drop-off who you know has an IEP kid too. These communities can help you find your voice and remind you that your child—and your family—deserve to be heard.

Looking Back and Looking Ahead

If I could do my daughter’s elementary years over again, I would trust my instincts sooner. I’d watch the calendar like a hawk, speak up the moment services were missed, and ask for compensatory support when my child didn't recieve her services. I’d inform the IEP Team that I will use “stay put” if they continue to recommend the elimination of her much-needed services — showing them that I know exactly what my rights are. And I’d lean harder on other parents who’ve walked this road before me.

But even though I didn’t know all of this then, I did my best — and so did my daughter. She worked so hard for that moment on stage. Despite all the hurdles, she made it, and she made me so proud.