Our Land – “I have Sensory Processing Disorder. If I’m loud, or rude, or refuse to talk to you, please don’t take it personally.”

Hi friends!  Have you been following The Our Land Series?  It came about because you responded with sharing love to The Land of Empathy and Wonder.  Since then, I’ve had the opportunity to feature some beautiful voices and people who very much want for Our Land to become a reality. Thank you all.  I appreciate each supporter, commenter, and author who has been kind enough to contribute to this new series.

Today’s contribution is brought to you by my pal Jen over at My Skewed View (formerly Break the Parenting Mold).  You may recognize her from her awesome Twisted Mixed Tape Tuesday party where a variety of authors share music that makes them think of being better off without him, of dumping him and of not having sex with Billy Idol.  Each week, she hosts a different topic (when I can get it together, I co-host).

Jen is funny, real, and faces an extra parenting challenge – one that has to do with her son having SPD.  So…without further ado, I present her contribution.

“I have Sensory Processing Disorder. If I’m loud, or rude, or refuse to talk to you, please don’t take it personally.”

I keep a pair of scissors next to my bed, and earplugs are readily located in my epi-pen bag. Today was a hard day. It was a hard day, and I didn’t handle it as well as I could have. The days when I do handle things well seem few and far between.

My son has Sensory Processing Disorder (SPD). Lately, when explaining this to people, I keep hearing, “Oh, yeah, my son/grandson/nephew has sensory issues, too.” Let me clarify: sensory issues and Sensory Processing Disorder are NOT the same thing. SPD is an actual disorder of the Nervous System. Any child with Spectrum issues, or with ADHD – or even with a lack of sleep and sensory overload at Grandma’s house –  is bound to exhibit one or two of the qualities associated with SPD; however, they may or not have actual SPD.

My son suffers from a disorder that is a result of his nervous system’s inability to process and integrate sensory input from most of his five senses.  When he was young he couldn’t eat, so he ate pureed baby food until he was two. Anything else would make him gag and throw up.  He could only drink water with ice in it, because his mouth could not sense room temperature water and he would choke. In his first year of eating, he had to have the Heimlich three times. He could not walk on grass or sand. My bubbly, happy boy shut down in a room with more than three people whom he did not know. He could not participate in a music class, but instead wandered around the outside of the room. Restaurants, malls, family events – oh, and museums! –  were a capital-N Nightmare.

I say that many of the qualities my son possesses are a blessing and a curse. He has above average intelligence with an astounding vocabulary. He communicates very well with adults, but struggles communicating with children. He is a daredevil, to a fault. He has impeccable balance. He always has to be the loudest sound in the room.

He has what they call “regulation issues.” This means once he starts something, he cannot stop it. Whether it is getting in someone’s face, being physical with a friend, running around the room and jumping on furniture, yelling, banging on things, chasing the dog, or even sucking on the strings from his sweat pants. (Speaking of which, he can only wear sweatpants, underwear with no elastic and tags, shirts that are only 100% super soft cotton with no tags, and pajamas with no tags. Hence, the scissors next to the bed. Every once in awhile I get lazy;  I should know better.) You may say, oh my kid does that. Here’s the difference:  my son CANNOT stop. He has to be physically removed from the situation, and trust me, as he gets older, that is no small feat.

Today we went to the zoo. He can only handle the zoo in a stroller. He is 7. Without a stroller, he is completely overwhelmed by the crowds and the sheer size of the exhibits. I don’t argue, because it is not something you can argue him out of, as – if you have been following along – it is a DISORDER. I see the people staring at me, wondering why that “big kid” who looks “perfectly normal” is in a stroller. I don’t care anymore.

Today he wanted to go to the Dolphin Show. Until today, I have avoided the Dolphin Show. I know what it’s like in there: it’s going to be echo-y, it’s going to be loud, and it’s going to be crowded. I tried to talk him out of it, but he insisted. He needs to learn these things for himself now that he is 7. He needs to start developing coping skills for his SPD, even if it means learning what to avoid. And even if it means I know that we are making a tactical day-at-the-zoo error.

We looked for a seat. We had to try three different seats before he was satisfied. I noticed quite quickly that he was becoming agitated, and the show hadn’t even started. I tried to distract him by pointing out all of the cool stuff that the dolphins, who were just hanging out, were doing. I tried to feed him snacks to keep his mind off of the noise.  He could not focus:  he told me he didn’t understand why the music was so loud. I gave him the ear plugs, but he pulled them out because he didn’t like how they felt. When sensory input agitates my son, he starts to get crabby and mean. He was angry with me and with the show. In a very rude tone, he bombarded me with questions:  when will the show start? why is it so loud? why is it so crowded? won’t you ask them to make the music quieter?  It’s very hard to explain to a child that his feelings are only a result of his brain not understanding how to deal with what is going on around him.

Things only went downhill from there. Once the show started and the noise was enhanced by an amplified announcer, I should have known better.  We should have left. I can not tell you how many people were watching us –  how many people wondering why was this kid acting so mean to his mother — why he just could not enjoy the Dolphin Show. I am sure it even detracted from their enjoyment of the show. Sometimes I wish he could wear a sign that said “I have Sensory Processing Disorder. If I’m loud, or rude, or refuse to talk to you, please don’t take it personally.”

Don’t feel bad, because how could you know? Even my family forgets daily. When he is loud, when he gets in his cousin’s face, he gets yelled at. He comes to me crying because he doesn’t understand their rules; he doesn’t understand what he did wrong. It is easy for them to forget that SPD fashions his behavior. 

And even now you might forget.  But try to remember. Try and understand what it would be like if you could not function because the information coming in through your senses was getting stuck in a tape loop and hitting a brick wall when it got to your brain. Imagine you are a child and the world is scarier for you than for almost everyone else. Think of that kid in your son’s tennis class who is always yelling, why that boy in your daughter’s music class sits in the corner and won’t participate, why that kid in the park can not seem to stay out of your kid’s face. Before you label him a “bad kid” or the product of “bad parents,” think again.  Although he looks PERFECTLY normal on the outside, he’s got a complicated brain.  Things that come naturally to you – and to your child – well, he has to learn how to “force” his brain to deal with them. Rather than your judgement, this child needs your empathy and your understanding.

A child with Sensory Processing Disorder has a very high chance of developing low self-esteem.  A child who constantly hears messages of “Can’t you just stop!” and who CAN NOT stop begins to blame himself.  Sensory Processing Disorder is not the acts of a defiant or “spirited” child. Sensory Processing Disorder is an actual neurological condition. If you meet a kid who seems to fit this bill, give him your patience, extend some empathy, and step in if you must, but please be gentle with your words. Remember, he cannot help himself, and it is our job – as adults – to help, to love, and to understand.

Jen is the homeschooling mom of a very loud, pyromaniacal boy; who faces special challenges everyday. He has Sensory Processing Disorder, an A-Typical Tic Disorder, 13 food allergies, and severe environmental allergies, this however does not keep him from being the life of the party. When she is not wrangling the boy, she is writing, listening to music and trying to keep her house from falling apart.  Quite unsuccessfully.