I’ll never forget the feeling of being lost in this new SPD world with no support. It swallowed me whole, everyday, all day. It affected my marriage. It affected every aspect of my life. We had determined that something was wrong with our son Jackson. We had known something was “different” since the day he was born. We told everyone including our parents, his doctor and nurses. We were always met with, “he’ll grow out of it” or told that we were over exaggerating his issues because the child I was living with was not the child they saw in public.

My husband and I were living with some form of the Tasmanian Devil. When Jackson was younger, it would take two of us to get him dressed in the morning and there were many mornings we could have used a third and fourth person had I been able to find them. The worst was being the one to physically pin him down to his bed and listen to him scream and writhe with his small body under our hands just to get a shirt or pair of pants on him.  Simply going to the store for milk became a task that was just best left until one of us could stay home with him. If we managed to get him dressed, getting in the car seat was another hurdle that often resulted in him finding a way out partway down the road and having a panic attack on the floor of the backseat.

I was met with discerning stares, rude comments and finger pointing when he was struggling in public. I have been stopped in the parking lot of a major retail store in the winter and criticized by a stranger that my child didn’t have a coat on (what this individual didn’t realize was that I was in my eager-to-teach mode that day and took a few minutes to enlighten her on SPD). Still, it was draining to have to defend our parenting skills to everyone. Did anyone else see how hard we were fighting for him? I was so tired of hearing that we just weren’t disciplining him enough.  As parents, we not only have the task of convincing professionals that something is wrong in order to get help, but we also have to endure judgment from others including our own family and the general public.

Up until we came to STAR Institute for treatment, we would often try to make him muster through events, family dinners, etc., in order to not cause a scene. I can’t tell you how many times I told Jackson, “You’ll be fine. Just a few more seconds.” when I knew it was going to be another thirty minutes.  At STAR Institute Treatment Center we learned that we needed to change our actions. There is a quote I love that says, “My child isn’t giving me a hard time, he is having a hard time.” I realized that we were Jackson’s sole voice. Embarrassment had to be set aside. The rude looks from other people in the store? I had to learn to ignore them. 

The number one thing I make sure to tell parents new to SPD is that you, as an SPD parent, are your child’s voice, brain, comfort and cheerleader. No one else will fight for your child like you will. You know your child best. Don’t be intimidated by anyone, including professionals that try to convince you of things that you know in your gut aren’t the best fit for your child.  Even when you are at your lowest as a parent (and in the SPD world these days can come more often than one would like), your child sees you as the saving grace. Simply saying, “I don’t know how to help you right now but I’m here and I see this is really hard for you. I’m not leaving you.” goes so many miles.

It’s not easy to always keep your emotions in check and stand firm in what you know is best for your child, especially when it’s family or a professional questioning you.  I know firsthand, it’s exhausting.  I had to reach a point where I invited them on our SPD train ride but I had to be ok to let those go that didn’t want to come along. I learned that they had to take their own set of tracks. Thankfully, I was glad to see that the majority of them made it to the same destination as we did eventually.

I want you to know that as a parent of an SPD child, you are amazing. Even on your worst days, you are amazing.  You are allowed pity parties…many of them. What you are not allowed to do as a parent, is stay in that pity place. You have to rise up for your child and be the voice. By watching you, your child will learn to advocate for him or herself.

If you are a spouse, grandparent, daycare provider or care provider, you have to surround us parents. You have to support us. We need to be validated more than you can understand or know and it means so much coming from those close to us.

What I can promise you are two things. One is that with or without support, you are capable. You are strong. You were gifted this child for a reason. I joke that I often feel like I was supposed to be a superhero but no one gave me the fancy cape. Look behind you and see how far you’ve come on your journey, even if it’s just that you finally figured out what SPD is.  You are about to form an amazing network on this journey. You will find people that believe in you and will provide the wind to allow you to soar in your new superhero cape. Oh, and I promise a third thing…it’s an amazing flight! 

If you are looking for treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish.  Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.