Sensory Processing Disorder is a tricky, tricky thing. We have lived with it in our home now for almost eleven years. While I am by no means an expert (as evidenced almost-daily in this house), I have been around the block enough now to know that there are many things I WISH I had known--or at least been warned about--when we were just starting out on this journey. It's my hope that I can be that voice in the back of your head (or one of them) that can offer you some words that can help, or comfort, or, more likely commiserate...
1. This is NOT your fault. Really. Or, truthfully, maybe it is. No one knows. And so that means that NOWHERE did you mess up enough to knowingly make your child have these issues. Yes, I ate red dye while I was pregnant. Maybe you drank a glass of wine before you knew you were. There was always that crazy sister of your dad's that everyone talked about, right?
It doesn't matter. As they say in Kindergarten, "you get what you get and you don't throw a fit". This is the reality, and SPD is a part of it. Stop worrying about what you might have, maybe, possibly, done wrong somewhere in the recent or distant past. It's not worth it, and it will take up extra energy that you need to use convincing yourself of number two and number three.
2. You are NOT making this up. I know, I know. If your child is anything like mine, you may have three days in a row of sanity that make you doubt yourself. Did you really see what you thought you saw? Maybe you were over-reacting. Maybe it was just a bad day. After all, your child is fine for everyone else, right?
I really think that self-doubt should be a trademark for SPD parents. One of the hallmarks of SPD, after all, is the unpredictability of it all. We do have good days and bad days with our kiddos. In the past, the good days made me doubt that there was really a problem. Now, the good days just make me wish for more good days in a row.
Stop doubting yourself. Because, ...
3. You are NOT crazy. Oh, Momma, I've been there. I've been in a doctor's office with a screaming 2 year-old, trying to convince the doctor that this screaming tantrum is not like everyone else's two year-old screaming tantrum. I've been looked at like DCFS is on speed dial while I've had to restrain my four year-old at the park. I've heard those conversations between friends while they didn't know I could hear. (Or maybe that was just the happy people that live in my mind. Maybe I really AM crazy!)
No, joking aside. You are not crazy. You are a brave, strong, fierce Momma lion, and you fight for someone to listen to you and to help your child and your family. People will think you are nuts.
I promise you that you are not.
4. Some days are going to be really, really, amazingly hard. With a capital, shout-it-out-to-the-world, H. Raising my ten year-old is hands-down, the hardest thing I've ever done. She exhausts me, wears me down, makes me so weary that I can't make another decision to save my life. So much of my brain power is filled with "what if" scenarios, or ways to make transitions easier for her, or worrying about when the next shoe is going to drop.
It's so very tiring. It makes me want to quit. In fact, I have quit, many, many times.
But we still have to get up the next day. And we do, because...
5. Some days aren't. When my Firefly is on her game, she is a light. She is funny, caring, and generous. Her spirit is so big that her body can't contain it. She has so much to share and talk about and love. And it builds me back up. And sometimes we have a few of those days in a row, and it's all worth it. And the no-good, horrible, very bad days fade away.
6. Not everyone will get it. In fact, very few will. Find someone who does. Break away for dinner, or for a drink, or chocolate. Make sure you have someone who you can call and cry to when you have locked yourself into your closet and just. can't. take. it. anymore.
It will help so very much. I promise.
And if you haven't found your person yet, call me.
We can cry in our closets together. I have been there, trust me.
(And thank you ever so much, Liz and Chrissy!)
7. You will lose some friends. Mostly because of number six. When people don't get it, they tend to not want to get it. They think that you are making things up or just a bad mom (number eight). Remember, though? That kind of thinking is not true.
Some people won't understand that their last-minute changes of plans (continually) mean that you finally have to stop making plans with them in order to maintain sanity in your home.
Some people don't want to offer playdates when you can't reciprocate.
Some may think the diet you've put your children on is bizarre.
Some may think it's just too hard to be your friend.
Not everyone thinks that way, Momma. Hang onto those you find who get it, and stop worrying about the others. They have been blessed to not have to get it. Your blessings are coming in another form.
You have enough going on to have to worry about. Choose your battles, sister.
8. You will think you are a bad mom. Maybe you should have picked up on those clues earlier. Maybe you should have tried X, Y, or Z therapy before. Maybe you lost it and yelled and screamed like a toddler because you were at the end of your rope. Maybe you slapped your child. Did you say things you shouldn't have said? Did you lock yourself in your closet for that cry a little too long? Are you a bad mom?
9. You aren't. Listen to me--you are human. You are trying your very best, but sometimes you fail. It's OK. You know why? You get up and try again. You love your kiddo, even when it is impossible to like them.
You are human--you are not God. You are not perfect.
10. Your child was given to you for a reason. It may be a long, long time before you can see it, but it's there. God doesn't make mistakes. He knew you were the perfect Momma for this job, just as He knew your child was the perfect child for you. It's hard to wrap your mind around, and some days it's hard to acknowledge.
But try to hang onto that. God doesn't make mistakes. He knows what He's doing, and our job is just to trust. But won't it be just wonderful one day to be able to ask Him, "just WHAT were you thinking?!"
Are you a Momma of a kiddo with SPD? What else would you add to this list?