There isn’t really any preparing for being a parent of a special needs child. It’s not like people advise you to read up on special needs, or prepare your hearts for it like they do for nearly everything else about being a parent. Nor does anyone grow up hoping they have a special needs child. However, it happens. Whether there is a cause for it or it is just the way your child was born, there is no changing it, for you or the child. There isn’t a user guide to raising a special needs child. But one thing I can tell you, as a mom of a special needs child, you will have to make decisions. Hard decisions where there is no clear right or wrong answer. Parenting a special needs child is hard, emotionally draining, amazing at times and you will ALWAYS question the decisions you make. Parenting special needs is mostly trial and error and investigating, guessing, researching and praying you are doing what’s best for your child. It’s emotionally draining and rarely rewarding, but YOU are the voice for your child. As a friend once told me in the middle of my own emotional break down “YOU are the only one who can speak for your child. YOU are the only person your child can always count on. And no matter what ANYONE thinks about your child throwing that fit in the grocery store, YOU know the cause of it. YOU know your child isn’t just a bad kid.”
You see for awhile I was so caught up in all the stares I would get. You know what I’m talking about. The side eyes or not so subtle head shakes and eye rolls. Those looks use to break me to my core. I KNEW my child was just in a sensory overload, but I also knew that to a stranger it looked like I couldn’t control my kid’s behavior. And you know what; to an extent they are right. Because when my child is in the middle of a sensory melt down he doesn’t hear me. He doesn’t have reason or understanding because he can’t PROCESS what is happening in his little body. That friend helped me to cope with that fact and helped me to learn to just take a deep breath and remember that I am the only one who will fight for him!
Now understanding that doesn’t make it any easier when you have to make choices for your special needs child. Today I had to do an IEP evaluation for Micah. For those not familiar it’s an individualized education plan. It gives us a plan to give to his ESE teacher(s) so they know the best ways to help him develop. I’ve known my child is different, for some time. I’ve processed and accepted that, but for some reason having it solidified through this evaluation for his education struck me deep in my heart. I left in tears. Scared, mad that we are even here, unsure of how to help him best and not knowing the best decision for him. We home school but now I’m faced with the decision if putting him in a public ESE preschool is what’s best for him. I have to face the fact that he may need more than I am capable of providing for him and his education. I am his safe place. I am the one who calms him down out of a sensory fit. I know the things that bring him back down. Now I have to decide if that’s what’s best for him, or if sending him to public school, with other children that are like him is what’s best for him. I know he won’t understand, he will be scared and frustrated and will feel lost, but is that the thing he needs to grow, or learn or develop??? I don’t have that answer. My mom gut is totally torn in two at the moment. I understand the benefits of both scenarios, but that doesn’t make the decision any easier. Because no one prepares you for having a special needs child and all the hard decisions that come with it. Every day is a new adventure or struggle. Every day is either a step in the right direction or 3 steps backwards. Some days feel like huge victories and other days I just cry. At the end of the day I am the only one who will fight for him. I am the one place he will always feel safe enough to be himself and I will always be the one having to make decisions for him and his education. I just wish there was a clear, distinct path laid out saying “GO THIS WAY!” Since that’s not the case I will try to make the best decision with the information I have and remember that most of this life is trial and error until you find what works best.