Sensory Processing Disorder: SPD, For Us

Sensory processing seems so simple; you hear, see, taste, feel and smell. These things aren’t, generally, overwhelming. Interacting with your environment doesn’t feel hostile or blank, it just is how it is. You don’t put yourself in danger seeing more input or have anxiety attacks over noise and food. Before my daughter struggled with sensory processing disorder, I had no idea how important this was.

When Skylar was 18 months, she wasn’t walking and she wasn’t talking or eating well, either. I told myself that only eating pureed food, her lack of muscle development and her daily tantrums were normal. After getting a professional opinion, we realized she needed help. At one point she was seeing 6 therapists a month. Sensory processing disorder took over our lives. Because of how unfamiliar I was with SPD I felt like I was at the mercy of therapy; yet, at the same time, left alone to wing it. I wish I had had someone to give me the information from the parents’ side of things, to say, “Here, I’ve learned this during my journey with SPD”.

Here are the most notable things I’ve learned during our SPD journey, so far:

1. The difference between avoiding behaviors and seeking behaviors are just that. Your avoider only wants to be touched by certain people or certain foods (or no food at all) because everything is too much for them. A seeking child may be the wild child. They have awareness of danger and just want input. My daughter is an avoider.
2. Having an avoider has turned meals into war. So long, perfect family dinners. Hello, everyone else’s ideas of what works for the “picky eater”. She will eat when she is hungry, right? She doesn’t. Food textures are the enemy and it is all a guessing game when it comes to what she will eat or how she will eat it. Sometimes she eats without a fight. Other nights she deconstructs everything and has no table manners.
3. My child’s avoidance of social interaction drives me nuts. I feel so defensive when she ignores a question or turns down hugs from people she’s deemed unworthy of affection, for that particular day. She isn’t being snotty. For whatever reason, she just can’t make herself. And that is ok, but I really have to remind myself of that.
4. The clothing wars are not worth it. I just buy her things she likes (she didn’t wear jeans for a very long time) and hope for the best. When we don’t have plans, she has a free pick day, and I generally dress her for school.
5. Therapy is SO helpful, eventually. Some days therapy felt like hell. She didn’t want to participate or they really pushed her. She cried, I cried. I felt like progress was never coming and then all of a sudden she would advance. As we are getting ready for kindergarten in the fall, the prioress has finally caught her up to her peers. It was worth years of extra work to have her ease into traditional schooling.
6. Potty training took forever. She wouldn’t sit, she definitely didn’t want anything to do with the tried and true methods, including turning down candy. One day she just decided she was and that was it. She decided. Even though she would use a potty at home, she was still accident-free.
7. Home is the safe place. Being an avoider, Skylar rarely had issues outside of the house. She was more likely to shut down when overwhelmed than to have a tantrum. At home, the meltdowns were insane. As her speech improvement gave her the ability to communicate, the tantrums are less severe and she knows how to get what she needs more effectively.
8. Schedules are so important. Meals, baths, activities, and bedtime are all kept pretty consistent. She likes to know what is happening and what to expect next. It helps her prepare and have less anxiety. She really thrives when she’s in-the-know.
9. For us, with age, it has gotten easier. As she understands more about the world around her, she tries more activities. Since she has been in school for 3 years, she opens up more easily. She gets braver with her meal choices. She is such a bright girl and I love seeing her blossom. For every obstacle she has had, her success has been amazing.
10. I notice things differently. I would never have prepared ahead for loud places or meals for a child before SPD. I wouldn’t have seen a busy room and made a mental plan. I wouldn’t be creative with meal time.

It isn’t an easy journey, but she’s worth it. I just love her fiercely, hope for the best, and wing it. Hoping to continue helping her progress while keeping her world less scary.

Are you an SPD parent? What do you wish you knew at the beginning of your journey? What advice would you give someone just beginning the journey?