As a special needs parent, I frequently hear phrases like, “You are so strong,” “I don’t know how you do it,” and “Only special people are sent special kids.” I feel like I’m always telling people I’m no stronger, no more capable than they are. In fact, I often feel like I’m less capable! I was not gifted with special abilities when I became a special needs parent. I am a mom, like any other mom. Struggling along with limited resources, trying to give my kids a good life — the same things most mothers are doing. I also don’t want to downplay the challenges that can come with parenting children with special needs. There are added challenges. But we are all trying to do the same things. And none of us can do it alone.
In that spirit, here is a list of things I’d like people to know about our lives as special needs parents.
1. We love our kids. We love our kids just like you love yours. We want our kids to succeed. One of the things good parents try to do is give our kids the tools to succeed in life. We want our children to be happy.
2. We celebrate milestones. Baby’s first smile, the first tooth, rolling over for the first time, and those first steps are big moments in parents’ and children’s lives.
3. Like every parent, sometimes we make mistakes. Parenting is tough. I don’t know a single parent who hasn’t done something they wish they could take back or amend.
4. We need a tribe. I fully believe that parenting is not meant to be done alone, or even just as a couple. It can feel lonely at times, and having people we can ask advice or vent our frustrations to is so important.
5. We need a break sometimes. We all love our kids. And we all sometimes need a break that doesn’t involve the bathroom.
6. We have strengths and weaknesses. I’m not a great housekeeper. I’m also not great at entertaining my kids. But I’m a decent cook, and I love exploring new ideas with my kids. I have exceptionally organized friends who don’t cook. I have friends who make the most Pinterest-worthy lunches I’ve seen. We all have that one friend whose house is always immaculate. Maybe that’s you! Everyone does something well. No one does everything perfectly.
7. Milestones can also be different when you have a child with special needs. We celebrate milestones, too, but sometimes it can take a little longer. When they are reached, it is a big deal!
8. We learn quickly we don’t have the time and energy to do all the things we used to do. They might be superseded by appointments, diet restrictions, equipment malfunctions, picking up prescriptions, ordering supplies, calling the doctor, feedings, and medical procedures.
9. It can be hard to find parents who understand what we are talking about when we’re discussing trachs and g-tubes, accessibility or lack thereof, and so forth. We often have our own language, which might require translation so we can communicate with other parents around us. Always explaining is hard, but what is harder is being on the sidelines of a group and being painfully aware no one in that group understands the lingo that describes your day-to-day life.
10. All parents experience fatigue. Many special needs parents live with it every day. We are not super human. We do not suddenly become the Energizer Bunny when our child received a life-altering diagnosis. And because it is often more challenging to find help with our child, we might have fewer opportunities to take care of ourselves.
11. We live with constant worry about our child’s health and wellbeing. We know our day, and sometimes our whole life, could be turned upside down at any time. However, when therapies are working, when progress is made, the feeling that comes with that is incredible! They joy of helping your child experience something no one was sure they would is amazing! Indescribable, really.
12. Special needs parents have a lot of the same challenges, hopes and desires as other parents. We just do what everyone else does under different circumstances. We take our kids to the doctor when they need it, though they might go to the doctor more than other kids. We feed them, though we might feed them differently. We make sure they receive a good education, even though it may mean meetings and phone calls and emails. Like all parents, we love our children. We celebrate their victories. We get worn down. We keep going anyway. We all want the same things for our kids. To people who say, “You are so strong” or “I don’t know how you do it” — you’d do it too. You’d be strong. You’d be just like us.