August 29, 2011

"What I'd Like the World to Know About My Son"

Could have written this myself...

What I’d like the world to know about my son
August 12, 2011 by shimmerbutterfly

Our son, let’s call him J, was diagnosed by an occupational therapist (OT) a month ago as having Sensory Processing Disorder. Although being alerted to something amiss by his crèche teacher about a year ago, it took us a while to pinpoint how to get help, what exactly to get help for, to fight with our medical aid for authorization, and to just accept that our son might have a disorder.

Seeing as this is brand new to our families, friends and others in our circle, I thought it would be good to share what my husband and I want them (and the rest of the world) to know about our son.

• SPD is a neurological disorder, which means his brain cannot properly decipher the messages his nerves are sending it. It messes with his ability to decipher messages from his sense of hearing, touch etc.
• It is NOT a mental disorder as Oprah Winfrey mistakenly portrayed it in one of her recent episodes.
• He isn’t retarded, slow or mentally challenged. In fact, he is bright as a button and advanced in quite a few spheres.
• He doesn’t have a behavioural problem. When he refuses point blank to do something, is aggressive, or has a ‘meltdown’ it is because he either cannot properly interpret sensory input or he is trying to protect himself from unknown sensory onslaught.
• When he suddenly begins screaming and runs terrified by a sudden noise, he is not ‘acting up’ or being silly. It is because he cannot stand sensation in his ears.
When he is faced with a new situation and refuses to participate or enjoy it like other children, he is not being defiant or picky. It is because he feels threatened and cannot handle all the new sensory information being thrown at him as fast as other children can.
• When he has an ‘accident’ in his pants after holding in a poo all day, it is not because he is a ‘baby’, it is because his interoceptive (internal) sense still has figure out how to tell his brain that his body needs to ‘go’.
• When he flits from one activity to another like a butterfly, is super distracted, and gets up and does his own thing, he is not ignoring instructions to settle down/participate or is deliberately being disruptive to the class.
• He is not sometimes anti-social because he is shy or because he wants to be a loner. Sometimes he needs to separate from others because they are loud, scary, unfamiliar or there are too many people for his senses to cope with.
• He is not demon possessed. You might be tempted to think so when he’s sick or when he is overwhelmed with sensory information!
• He is not being spoiled or attention-seeking when he overreacts to being hurt and takes ages to calm down. His senses have just been dealt an extra traumatizing blow.
• He is not being irrational or a cry-baby when he freaks out at a seemingly harmless situation or a creature with which he has previously had an unpleasant experience.
• He is not being ungrateful or spoiled if he refuses certain foods. He likes a limited repertoire of textures and tastes he can handle and is familiar with.
• He does things ritualistically because doing familiar things feel safe and limits the possibility of unfamiliar input.
• His condition is not imaginary and there is no quick fix. He will grow out of some of it, and a lot of occupational therapy, love, understanding and prayer will help him to cope with the rest of it.

My son goes through life chronically stressed out and on the defensive. J’s OT described him as ‘clinging to the corner of the ceiling’ – I almost cried when I heard that. Our task is now to get him down to earth and into a tricky balance between awareness and attentiveness.

So this is what my husband and I would like the world to know about our son before they judge him: He is an exceptional little boy – a gentle, sensitive, loving and compassionate soul who is often misunderstood and mishandled because of his sensory issues. He is a miracle of God (born after a difficult pregnancy), an answer to a longstanding prayer (born after 15 years of marriage) and a constant reminder that parenting a child with extra needs is certainly not for sissies!


Mei-Ling said...

A lot of what this parent has written about is stuff I can identify with, even as an adult.

I do prefer the label "introvert", however. ;)

Jenn said...

I used to babysit for a boy with the same disorder. It was one of the scariest things in the world because he would routinely do things that were dangerous (like putting a hand on a hot stove) because he didn't process them as dangerous. However, when he wasn't doing dangerous things he was the sweetest little boy that was misunderstood by a lot of people. He was also an adoptee.