From Fear to Growth: Five lessons I learned during my son’s first school year that every special needs mom should hear.

I remember last August I came home from Sam’s meet the teacher and just bawled my eyes out. I was so overwhelmed with everything that was changing and nothing felt safe. We were leaving the bubble we had been in for the last four years, and I was absolutely terrified. Everything felt heavy and impossible and I had a meltdown so big it rivaled what my toddlers used to do! I know you might know that feeling, where no one could say the right thing, there were so many fears creeping in and the only thing that felt right was bawling about it. Sometimes we just need those types of cries though. Sometimes, we need to be blubbering in our own snot and just let it all out. Turns out I found out pretty quickly how magical his new world was. His Life Skills teacher was going above and beyond any expectations we had and his aides in her class were literal angels sent from heaven. Sam ended up having the best year he's ever had in school! He learned more than we ever expected, and he won over the entire school with his elbow bumps and high fives! But while it was an amazing year of growth there were also some things I learned along the way. This past year taught me so much, not just about Sam, but about myself as a person and as his mom. As always he continues to change me, push me, and inspire me daily. Here are five lessons I’m carrying with me into his first grade year:

1. Kids are more resilient than we give them credit for. I know this about Sam- we have known this since he was born. He has always needed more time. But with this big of a transition I was really worried about it. I spent MONTHS worrying how he’d handle the new environment, new faces, and new expectations. How would his tiny self manage to walk those long hallways all day long? How would he handle his new therapy schedule and school?  Would he ever eat in the cafeteria, etc… And yes, there were tears (his and mine), but there was also courage. Watching him grow this year was such a gift. Watching the friendships form between him and other kids and watching him just handle it just reminded me yet again, that when given the chance, he always proves himself! I know not every new thing is met with such ease, but I also know that he deserves every chance possible, and I just need to give him space, time and grace to GROW! Looking back, maybe the fear wasn't so much about him, but more about how would the world react to him? I know the anxiety that comes with change and unknowns are unavoidable, especially when it's such a big transition, but give your child (and yourself) space and grace to learn and grow!
   

2. Advocacy is a marathon, not a sprint. The first IEP meeting felt like a marathon, maybe because it was. I learned that showing up consistently, asking questions, and keeping communication open really does make a huge difference! Does it feel like a full-time job? Yes, it does. But also something we just have to be willing to take on. I also learned that while I should expect his service providers (for music, speech and OT) to keep in contact with me, the reality is, I needed to stay on top of them too and request the data and make sure that things are being done in fidelity of his IEP. Don’t ever feel like you are stepping on toes asking for your kids data and progress notes for those services. You deserve to be in the know. This year, I’m using a communication tracker so I can stay organized and on top of things without drowning in emails. This will be especially helpful when is annual IEP meeting comes around and I can advocate to continue those same services by showing how much they impacted his overall growth! You can download the template I am using here.
   

   

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3. Small victories matter. Whether it was getting to go to his inclusion class without an aide, eating all his lunch in the cafeteria or riding the bus like a big boy, these moments might look tiny from the outside, but they were huge for us! Small wins matter! I am going to keep this sentiment as we potty train him this fall (for real this time!). I know I said we would do it over summer, but the lack of routine and structure just didn’t work for Sam, so ready or not it is happening soon! And the plus side to waiting a few more months is I really think he is more aware and interested now that he was before. These little wins are the building blocks of big progress, so celebrate those small wins- and not just theirs, your wins too!
   

4. I have to let go… a little. There were moments I wanted to hover, to make sure everything went perfectly. I have a bad case of being a helicopter mom with him but I cannot help it!! Stepping back and trusting his teachers and aides gave him room to grow — and boy did he GROW this last year and in turn it gave me space to breathe. It gave me permission to take up space in my own life and actually start a hobby- like tennis, more on that another time though! The older Sam gets (and believe it or not he will be 8 in January) I have really evolved in how I handle things with him. This is a marathon, not a sprint and there is no reason to always be in a rush to do things. There are seasons where it makes sense to double down on a goal and other seasons where you are just coasting and enjoying the journey. Give yourself permission to take up space, to do things you want to do, start a new hobby, or start that book club. Whatever it is. Take up space in your own life. Yes, special needs parenting is all consuming and theres a never ending to-do list and something will always seem more important but you deserve it. Theres no reward or merit badge for doing the most. Letting go a little doesn’t mean you’re failing—it might just mean you’re giving yourself something in return.
   

5. I have to be willing to put myself out there. The loss of the Rise community was hard on me mentally. Sam was born shortly before covid and I found my community within my little squares of IG. I couldn’t leave the house, was stuck at home and those moms in that "virtual" world became my people. It made me feel less alone. It was what I needed for the season we were in. And when we started at Rise, a lot of that online community became real life friends and it was amazing. Rise was this special bubble where there were no explanations needed! It was like being able to let out that deep breath I had been holding onto. But the truth is, it's not reality. When our time there ended, I realized I was losing our community and while I do keep in touch with a lot of the families, I needed to invest in our neighbors and in our school community. These are the people I needed rooting for us. These are the people that needed to understand Sam and support our family. I learned that if I wanted his peers to know him, if I want the teachers to include him- I have to do my part too and get in the mix. I need to volunteer. I need to show up. I need to talk about his differences and explain things about him. I need to step out of my introverted shell and make those connections and introductions. I need to be the mom that talks about the differences and shows others how to interact and engage with Sam. I can't just assume the world should know, because they didn’t! Volunteering, sharing, starting conversations—it made a HUGE difference. I learned that people wanted to support us, but they needed me to take the first step. And once I did, I realized we weren’t as alone as I feared.
   

So here’s the truth I wish I could tell that version of me who came home crying last August: yes, there will be hard days. The grief is always there in some capacity. Yes, the unknowns feel terrifying. But there will also be moments that make your heart swell with pride and joy. Hold on to those. They’re the ones that will carry you through. And mama—don’t forget—you’re learning and growing right alongside your child. If you’re a special needs mom, share your back-to-school story—I know another mama needs to hear it. Rooting for you, Sara Special Needs Parenting Special Needs Mom Disability Parenting IEP Journey IEP Parent Advocacy Matters Parent Advocate Inclusion Matters Parenting Journey Back To School Mom Life School Days Parenting Wins