Anything to do with “parenting” these days is big business. We all want to get it “right”! Because of this desire to be the best parent we can be, we compare, compare, compare and judge, judge, judge. Parenting is hard work and unfortunately instead of supporting one another we shame each other. Our culture is so fixated on being the “perfect parent” that we forget our goal is to develop healthy, happy children. Parents compare, parents judge, parents are often hopeless and feel helpless in knowing what to do with these crazy whirling dervishes we call kids. We forget there are no requirements or protocols for parenting. When you add a disability to the equation, you can easily feel lost, alone, and forgotten by the other parents around you because “they just don’t get it.”
When you have a “different” kid, judging can become severe. What another parent would do and what you do is usually the opposite. Parent shaming is nothing new, as we all know about it and strive to not do it. The challenge with Sensory Processing Disorder (SPD) is the general public doesn’t know what it is and if they do, they think that the only children with SPD are those on the autism spectrum.
SPD is highly prevalent in autism but it is also an independent diagnosis in itself. In fact it happens in about 5% of the population. The children with SPD that are most often misunderstood and are a challenge to typical parenting strategies. In particular, “sensory seeking” children which are in constant motion and need to feed their nervous systems of sensory input. You see, “seeking” is just that; these children crave input because their bodies feel as if they are astronauts floating in space. They look for sensory stimuli to help them feel and know where their bodies are in space.
This often includes: Jumping off objects, running into things, excessive climbing, aggressive touch, constant shoving & pushing, cravings for high sugar & fat foods, novelty visual stimuli eg. video games, talking VERY loud, lack of awareness of personal space bubbles, and the list goes on! For more information about sensory seeking go to https://www.spdstar.org/
Sensory kids do these behaviors so that they can calm down and focus! These behaviors, specifically sensory seeking ones, can look like ADHD, which is often misdiagnosed in SPD kids. Parents like to tell you “they know,” your child just needs discipline and better manners. Parent shaming focuses on how the child doesn't “fit” into the mold of societal expectations and “shame on parents for not getting them to conform.”
When other parents see my son’s behaviors, very few stop to ask, “so what’s up with him?” I would relish the ability to answer this question and educate these individuals on my smiling happy boy, who happens to have SPD. Why not ask, “he has some unique abilities, how are you managing?” I would probably cry tears of joy for being seen as a parent of a child with “unique abilities” because that is how I see them! Parents at large, as well as many professionals see these abilities as “behaviors to be controlled.” As a society we hear and are cautious about those differences in children that are seen and unseen, like transgendered kids, learning disabled kids, and medically ill children. Yet, we as a society still haven’t learned to talk about them, or to acknowledge the families they are a part of. SPD kids fall into this category because their behaviors are often deemed “out of control”, impulsive, unsafe, and illustrative of a parenting issue.
They are seen as “bad kids” that need to be controlled and dominated into appropriate submission. If you’ve interacted with a SPD child then you know that controlling and punishing said behaviors does nothing to change them. SPD is a nervous system disorder where sensory input from their environment and internal systems get received by the body and interpreted by the brain which receives, interprets, then acts upon the information. The problem with SPD is these signals are mixed up, not registered, over registered or a combination of all registrations. This traffic jam in the brain leads to a stressful daily environment and challenges the family unit and the relationships within. This stress and strain creates pain for all involved.
Much of this strain falls onto their brothers and sisters.
Through this process of raising a child with SPD, the whole family is impacted and judged. When people don’t understand something, they choose to evaluate or compare it to their perception of “normal.” And when you have an SPD kid, you start to learn to adapt to a new, challenging yet
beautiful kind of normal.
We have a trapeze in our living room for our son to spin on, for example! Watching TV includes snuggling with a child who is upside down or squished behind you. There can definitely be chaos in our home when my husband and I are trying to manage two young children that have different sensory needs. My daughter has felt left out, and verbalized “you spend more time with him then me,” when we are attending to our son’s SPD exercises, which require him and us to expend a lot of energy. Although our daughter accepts her brother unconditionally, she experiences normal sibling tension and jealousy. We all know how this can be! She has spent hours waiting in medical waiting rooms, and having sleepless parents likely missing some of her own amazing growth. In addition, I hear other children ask my daughter why her brother spins, climbs, runs into them, and yells while standing right in front of them in a weird speech pattern, causing significant pain to her. She defends him because they are best friends. It is only later when she asks the questions of "why?" Specifically, why is her brother different? Why can’t he just do normal things?
In our family, we believe in being honest with our children and explaining the beauty of her brother’s diagnosis. We inform our daughter that most people just won’t understand. Explaining the concept of being “unique” isn’t so difficult when you have such a glaring example in your face daily. She loves her brother and embraces him fully. For example, she doesn’t see his feet where his head should be (because he is upside down, seeking sensory input) while eating dinner out. Instead, she plays games and keeps him engaged, all while talking to him under the table. She encourages his spinning and climbing on the playground, while other parents are looking at her parents and whispering to one another with judgmental glares. She cheers and claps, and has a smile SO big, just watching the joy of her brother’s achievement. Furthermore, she often chooses to play with him versus other kids… because the other kids won’t play with him, as “they don’t understand him momma, I do.” The wonderful thing about children is, they don’t see difference, they don’t judge, they have open hearts, and they just want to play.
I cherish their mutual adoration for one another.
Parenting a SPD kid is hard, having one as a brother, is priceless.