Press, Squeeze & Twist

For me, spring & summer are usually uncomfortable seasons. Most enjoy the birds chirping, flowers blooming, the hot sun that leads to pools & water parks……and the day is bursting with life and the evening gives off a sweet calm breeze of delight. Rest is a go and a thumbs up has been given for a job well done. Nevertheless, a cloud eases its way over our domain with the sole purpose of dampening the indulgence & joy of it all. Initially and even sometimes now, the doors, walls & roof have become my haven, safe from the world of onlookers wondering why my son’s lips are a magnet to my arm, elbow, back & hand. Why is that lady walking throughout the grocery store, arm twisted toward the back of her all for her son to kiss her elbow? (Not kissing though.) Why is that big boy holding onto his Mom like that? (More like squeezing until red.) So how does these seasons influence such attraction? Well, it’s simple. Hot is equivalent to less clothing, especially where I live. Tank tops….sundresses…..which suggests to Callie that there’s that time again where the work of lifting up my sleeve to press his mouth against my elbow has momentarily ceased. Mom has on a sleeveless dress. No work involved. Just sensory paradise!!!!!!!!…….for him. For me, pain & soreness, like a bad massage gone worse……every hour, some insufferable than others, but somehow never skips a beat. Whether it was a sound, an activity, a routine change, something chaotic, something distracting, something overwhelming….it didn’t matter. The three amigos – press , squeeze, & twist were waiting anxiously to come on the scene. Information that is processed in a not-so-ordinary way can cause a child with autism to be distressed, confused or discomforted. Usually this response has to do with the senses – hearing, sight, touch, smell and movement too. The child may overreact or under react. The sensory overload, as it is often called, can interfere with their learning, affect their behavior and even impact communication, relationships, self-awareness and safety. I didn’t comprehend the magnitude of these urges that would overlook others, only to incline in my direction. He would touch the faces of my husband and his brothers, but nothing seem to compare to the likes of me. Maybe because I was always there. Maybe because I had patience & did not flinch at every touch. Maybe because he knew I was going to stick it out….trial & error….over & over until we figure out alternatives. Maybe because I was his safeguard against the misunderstandings of the world. Maybe. I don’t know. Maybe the arm Callie was drawn to represented more than the overt. The arm was proxy for something much bigger. He gravitated to something he couldn’t let go….and to something that had a tighter grip than his…my heart. Callie did not begin the journey here. He was extremely sensitive to loud noises. Crowds was something we refrained from. Touching of any kind was only approved if he was the giver, not the receiver. And then there was the spinning….and spinning….and spinning without any dizziness occurring. Later came overly tight hugs where I was the recipient, however, reciprocation was not welcomed nor appreciated. He made that known. I didn’t mind. Anything remotely that favored affection, I was good with. To me, it was either a boy in his own world with his on agenda OR nothing at all. I chose the boy in his own world. Meltdowns followed. Because Callie was not processing the overpowering sensations he was feeling, in addition to having the inability to express this unpleasantness, he began to cry A LOT! Like with haircuts. I just knew the world was coming to an end whenever it was time for clippers to meet Callie’s head. He cried. He screamed. He ran. I cried. I wanted to scream. I wanted to run. I spoke with his speech therapist at the time who told me that Callie probably was suffering from a sensory processing disorder. I thought, “On top of the autism? Really?” At that point, every week, every day there was an expectation for more problems to mount up. I worked very hard on dealing with his challenges, but at the end of the day, in the back of my mind, I was wondering, “What’s next?” The speech therapist recommended we see an occupational therapist. I found one of the best outside of our city. She was worth the 45 minute to an hour drive. She developed a treatment that fit Callie’s needs and further gave me sensory techniques to use at home. She not only addressed his difficulty processing information that he was receiving from his senses, but she also recognized his lack of communication skills and incorporated a plan to help him in that area as well. She had swings, large exercise balls, squishy balls, skateboard & skateboard ramp, bicycles, play dough, sand, shaving cream….you name it, she pretty much had it. She used these things in activities to improve Callie’s focus and to better handle his sensory issues in a calming manner. Of course, she worked on the fine motor skills and the self help skills too, but the sensory outbursts were my main concern….and with each visit, he was improving. He doesn’t see this therapist anymore, and I haven’t found one as good as her, but like everything else, we walk slowly, absorbing what we can, when we can…..always hoping for the best. Spring is turning into summer and Callie is on my arm. Some days are lighter than others. But, I think I’ve become immune to the constant discomfort. He’s older and a lot stronger than I am, and old techniques don’t work for where he is at this age and developmentally. I, however, have gone back to the trial & error until something pops up shouting “This is it!!!!!!!!” Yet until then, I wait. Patience is a virtue I had to adapt quickly. Great rewards have proceeded extreme times of patience. In the meantime, we’ll use one of his favorite cartoons to illustrate the ties that bind. Callie is Linus and I could definitely be Charlie Brown, his trusted friend…..but instead today, I think I’ll be the blanket, the thing, he can press, squeeze & twist without any hesitation, without any fear, all for relief, all for security, all for love.

Thanks for listening,

 

Portia

 

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