The last 10 months have seemed like a sprint at the end of a marathon. You are already exhausted from your extended run but somehow you dig deep so the guy next to you doesn't beat you to the finish line. It has been a long three years of questioning and doctors and suggestions that didn't work and now that we have answers, we feel like we are sprinting to make up for lost time before we potentially lose support in Kindergarten. As we gulp our water and run like our hair is on fire, we have discovered a few truths about sensory processing disorder. I felt like this was a great place to share them.
Truth # 1:
Kids with sensory processing disorder can be very verbal. My daughter scored 40 points above the average child in her age bracket on the verbal tests but is just learning how to communicate things like hunger and bathroom needs. She needs prompting to make eye contact and say hello to peers and adults. She talks constantly (every moment of her waking day) at home but is just beginning to speak in school and new situations. She is much more comfortable when her brother is with her. So having a huge vocabulary or being able to talk the ear off of someone when she is in a comfortable situation is one of her strengths that we are utilizing on this sensory processing journey.
Truth # 2
Many kids with sensory processing disorder are very anxious beings. My daughter does not like to try anything new until she watches someone she trusts do it first. She does not dive head long into a ball pit or run up to new children to play with them. She stands quietly and observes. If I try to push her, she will freak out. But if she does it on her own terms, she will quietly tip toe into a new situation. There are many things she is anxious about including getting her hands dirty, going to the bathroom, new clothes, capris, 3/4 length sleeves and foods that are squishy. The list goes on and on but for the sake of time, I will move on.
Truth # 3
Kids with sensory processing disorder can be very quiet. When she was diagnosed, we were told SPD kids fall usually into two categories- fight or flight. My daughter is a flight risk. So when faced with a sensory problem, she is much more apt to melt into the background and disappear than she is to pitch a fit. Especially in public. Especially when she does not have someone with her who she feels completely comfortable with. She saves her meltdowns for home. If you drove past our house some mornings when it is time to get her dressed (see anxiety over wearing capris), you might get a different view of our world.
Sensory Processing Disorder can make some children extremely compassionate and caring people. It also makes some kids completely unaware of other people's needs because the internal distraction is just too much. There is just not one version of a child with sensory needs. Even in the same family the sensory needs might be different. Just as with non SPD kids, every child with SPD is different.
Truth # 5
It takes children with Sensory Processing Disorder longer to bounce back from being sick. If you think about your own personal experience with illness, you will find that it takes a few days to get back on your feet after a stomach bug. Now, imagine your whole body is a raw nerve and any slight change is upsetting. Throw a stomach bug on top of that and you can picture the damage it does. We are two weeks out from a stomach bug and finally beginning to return to our normal. It is a very long journey and we are lucky we are normally healthy. Post sickness aftershock is worse than the original bug.
In my opinion, this is the most important one. Sensory Processing Disorder is something my daughter will have her whole life. Her internal wiring will not magically realign itself to be like child without this disability. The work we are doing now will help her to feel better in her own body and help her manage herself in a loud and unpredictable world. As she grows, her needs will change and we will need to make adjustments. We will teach her new coping skills and give her the support she needs to thrive. At some point, most people will forget that this is something she even has. That is our goal. But, in all honesty, she will always be a child with this disorder and it will shape who she is in amazing and challenging ways.