I must admit, I’ve been pretty emotional about today’s post. It is a difficult one to write. I know I write about a lot of “tough” topics that might be considered taboo or unpopular with the mainstream population. Especially, when it comes to me personally being transparent about my opinions or feelings on stuff. However today, this post is about my daughter’s sensory processing disorder (SPD). The post is difficult because I know people will not understand the disorder and develop their own harsh opinions about us, and unfortunately my daughter. As a mother, there is nothing more than I want to do than to protect her. It is also hard to come to terms with the fact she is considered “special needs”. That is a tough phrase to hear your child, who appears so “normal”, described as. What is harder, is when people do not understand the disorder and feel it is an excuse for bad behavior.
SPD is an umbrella term, much like the term Autism Spectrum, used to describe a number of neurological disorders. It is also called Sensory Integration Dysfunction, SI Dysfunction, and Dysfunction in Sensory Integration (DSI). The basic definition according to the book, Out Of Sync Child, of SPD is the inability to use information received through the senses in order to function smoothly in daily life. There are 3 categories and 5 subtypes of SPD. This means each child displays SPD differently. Our daughter’s form is so mild, that she was almost not diagnosed by a general children’s therapist. Only because the therapist had previously worked with other SPD kids, she was alerted to a few aversions our daughter displayed. She recommended an Occupational Therapist (OT) to evaluate her for a confirmed diagnosis. That is how we confirmed her SPD. Things that I thought were just her personality quirks or normal toddler phases, were actual signs of SPD. Such as picky eating, clumsiness, tantrums in loud/chaotic environments, independent play, endless energy, and sensitive hearing. The symptoms became even more pronounced when she began pre-school and they chose to discipline her for every misdoing, although other kids were behaving poorly too. Our OT tried offering suggestions and techniques to help our daughter during her meltdowns or how to prevent the meltdowns, yet the school decided to mold our daughter into a “normal” child definition. It backfired big time, and now we are reaping the repercussions. We’ve used this summer to re-direct those learned bad habits and help her re-process the behavior she learned. Unfortunately, that has been harder to do than we thought. We never had an issue with her hitting other children at the playground, suddenly she was hitting and shoving everyone. I never had issues doing arts and crafts with her. We used to color all the time. Now, she becomes easily frustrated at trying to hold the crayon, scissors, and squeezing the glue. She will shout, throw things, push the stuff off the table, and cry. Social situations really confuse her. She can be impulsive and have little focus. Before school, we could give her a toy or book, and had zero problems with her sitting in a lobby with us. All of these areas need more therapy. We take her to OT every other week, put her in gymnastics to improve gross motor skills, and I do a lot of work with her. I do a lot of role playing, tasks that require her to focus or sit still, obstacle courses that make her follow directions, work with her on waiting, and fine motor skill tasks. I know to help her accomplish these tasks, she needs to have active play to expend her energy before she can sit still to focus. With all of that, we still have good and bad days. Some days, she cannot process what her senses are telling her and she reacts in a meltdown. It isn’t just a “I’m not getting my way, spank my rear and I behave” tantrum either. I’m talking about an irrational, uncontrollable emotional meltdown. Sometimes, I have no idea what set her off. I try to extract the trigger, but she doesn’t even know how to tell me. It is because she doesn’t understand what her senses are telling her. How do you punish a child that doesn’t understand why she reacted the way she did. You can’t; because when you do, she gets worse. All I can do is show her how to control those big emotions of uncertainty. When she is like this, it requires a little more patience to deal with her. Sometimes, she just needs a nap, alone time, or extra cuddles to help her feel secure. We are blessed that SPD is the only neurological disorder she has and that it is so mild. Academically, she is off the charts. She always impresses teachers and adults with how much she knows and understands.
Which leads me to my next emotional hump. Not everyone will understand her disorder or care to take the time too. The pre-school didn’t. Hopefully, this new one will. Just yesterday, her gymnastics coach told me she has one more chance to “behave” in class or she will be kicked out. Yesterday was her first day in a class without me. The summer camp coaches worked with her and knew they needed to keep a closer eye on her, but overall gave nothing but praises for her trying so hard. My daughter loves gymnastics. Now, this coach could take it away from her. I tried explaining to the coach that my daughter had SPD and just needs a little more direction and time to process her requirements. The coach simply told me she needed to attend the younger class then, which requires my participation. I obviously cannot participate in gymnastics while pregnant or once the baby is here. The coach’s attitude was a slap in my face. It really hurt me, because I know how much it will hurt my kid to know she cannot go back for reasons she cannot control. If my child was more visibly special needs, would the coach be so quick to be harsh? I doubt it. That’s why this post hurts me so much. Will she be denied and faced with this type of scrutiny her whole life? How can I help her process this emotion, once she notices this type of treatment? I guess this is where I have to navigate this new pathway as a mother. I am trying, but it is overwhelming to process.