Sending our kids to school is almost always wonderful and terrifying, infused with countless hopes and a handful of fears. We who have gone through this journey already know just how formative a good (or bad) teacher or classmate can be, and I’d venture to guess that everyone reading this can picture at least one of each right now, even if it’s been decades. When our neurodiverse kids leave home for a new classroom, the stakes seem even higher. I worried more about sending my second grader with special needs back to school last week than I did about her kindergarten sister. Eliza has Prader-Willi Syndrome, and while there are shared characteristics across the board with people who share her diagnosis, she doesn’t fit into any one box. No one does. As her mom, I want to celebrate who she is and challenge her to grow into the fullest expression of her abilities, and I want her school to do the same. Here are five things that have helped me move closer to that goal.
1. Give a Cliffsnotes version of your child’s Individualized Education Program (IEP) to teachers and staff
Eliza’s IEP is 21 pages long, and like any legal document, it’s not particularly reader-friendly. I want and expect teachers and staff who work with her to read the real deal, but as a former teacher myself, I also appreciate just how effective a shorter document can be in making sure the most important skills, challenges, and accommodations are communicated. The real bonus is you get to share these goals, tips, and tricks the way you want them shared. Use bullet points, bold or highlight the most important parts, and let the school team know your vision for your child. Eliza’s school resource page has a colorful picture of her, a Dr. Seuss quote I love, a vision statement for our hopes for her, a list of things that work (and things that don’t), and links to resources I trust where the team get more information on her specific diagnosis. See what ours looks like here.
2. Set aside a time to check in with your kid daily
Plan a time each day when you can check in one-on-one with each of your kids, and try to make that time consistent. It doesn’t have to be at the very end of the day (which is the worst time for me…I feel like I’ve used up all my good parenting energy by 7pm), and it doesn’t have to be for very long. You can even use a visual timer and consider saying something like, “For the next five minutes, you have my undivided attention. Let’s color together, and you can tell me about your day.” Ask about who she sat with at lunch, what her high/low moments were, and if there is anything she wishes was different at school. Try repeating back what you hear her saying and follow up with “then what happened?” or “tell me more.” Knowing you will listen every single day is a gift you can give your kid, and it doesn’t have to take a lot of time.
3. Send a letter to the parents
I sent Eliza’s kindergarten teacher a letter to distribute to the class email list introducing our family and giving a very short introduction to PWS because we had just moved to the area, and I wanted her to feel like she was in a community that knew her even though we didn’t have that yet. I was amazed at how receptive the other parents were to learning more about our daughter and her diagnosis, and I heard from more than one that it was helpful in talking to their own kids about why Eliza may do things a little differently. We decided to do it again this year, even though she knew most of her peers as a returning student. Her teacher printed copies and sent them out in the Friday folder, and it gives not only a generalized picture, but it also helps parents and students understand why the class moved from candy rewards to a prize box. It’s a small step, but it’s a big one. Take a look at ours here.
4. Teach your child how to advocate for themselves and back them up
A therapist at Eliza’s old school said that she was doing everything she could to make sure that Eliza’s therapies and accommodations were unnoticed from others. I could see where this was coming from a place of compassion, but I told her that we want Eliza to acknowledge and claim her needs now in school so that she can do that later as an independent adult. Generally speaking, people with her disability don’t live independently, but we still hope that dream will become a reality, and we want her to have as much choice in her life as possible either way. Providing her with modeling, tools, and practice to advocate for herself is a huge part of achieving that. We never want her to feel ashamed or embarrassed of the way she learns or interacts, and she knows that we will have her back and foster that self-awareness every step of the way.
5. Don’t be afraid to be a squeaky wheel
I am an Enneagram Nine…an avoider of conflict and a total people pleaser, so this one is still hella hard for me. But I am learning again and again how important it is to return to the table when the plan isn’t working. It is okay to ask for a new IEP meeting (you are allowed to do that at any point in the year). It is okay to push for more time in the general ed classroom. It is okay to ask questions, to return to the legally-binding document that outlines accommodations, and to bring an advocate to especially hard meetings (or any meetings, for that matter). I love my kids’ school…I love the resource team and therapists, and I feel like my girls hit the teacher jackpot this year. But my first responsibility isn’t to be well-liked by any of them. My first responsibility is to advocate to ensure my daughter gets everything she needs on her IEP and that the school abides by that mutually-agreed upon document. I can and will be kind, but it doesn’t mean I won’t keep pushing for what I believe is right.
At the end of the day, you know your kid better than anyone, and sharing what you know with her team is not a burden, but a gift. School is an exciting place for her to spread her wings, and knowing that home is a soft place to land will give her the confidence to soar. You’ve got this.