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Tuesday, October 19, 2010

Sensory Processing Disorder

If you're like me, your response is what?

The first time I heard SPD in it's full name, I had no idea what it meant. I had never heard of it before! It is a term that everyone should know. As of today, 1 in 20....that's ONE IN TWENTY children is affected by it!

It is a long explanation of what exactly it is. It is a spectrum disorder just like TS or Autism. It never affects any individual in the same way and what works for one child, may not work for another. So, if you are familiar with either of those disorders, then you know an explanation is a bit harder to give to someone. It is almost easier to explain what it is not!

It is not some twisted game a child is playing to get his or her own way. It is not a "behavioral problem". It is not an undisciplined or ill disciplined child. It is not a parent looking for an excuse as to why their child is behaving in such a way. I think that about covers all the normal reactions of those that have not heard of it or don't believe in it.

What SPD is, is a neurological issue. It is how these children's brains are wired. They have no control over it, it is just how they work. Some children are very mild and can pass through life with a few "quirks". Others are way more severe and require a lot of intensive physical, speech and most importantly occupational therapy.

Imagine if you can, having a day where no matter how dim it is outside, it feels like you've got a spotlight aimed at your eyes. That no matter the level of sound, it is like someone is talking to you through a bullhorn all day. On top of that, your clothes feel like wool on your skin, itchy and scratchy. You cannot turn down the volume, you cannot change your clothes and you cannot dim the world around you. At the end of most likely 20 minutes or so, an average adult is at their wits end!

This is how an SPD brain works. Only it encompasses a myriad of other sensory issues besides, hearing, sight and touch. It includes where their body is in the environment, how their body feels while in motion or still, how things feel in their mouth, not just taste, their sometimes extremely sensitive sense of smell. It all ties in together.

For my part in this explanation, I have 2 boys with SPD! Funny enough the complete opposite of each other's issues! DW is mostly a sensory avoider with seeking behavior and JD, my youngest, is the one who doesn't register much of anything with seeking behaviors, poor coordination and some delays.

The first time I knew something wasn't quite right with DW he was only 3 months old. I realized that unless he was being rocked, in a swing or some kind of constant motion, he would not sleep. Then when he was finally into stacking blocks, he had to always do it by color. Cars had to be lined up in a row. He would not by a year and older walk on the grass. He began to choke on mashed potatoes!! No matter how watered down they were. He could not eat if he had to touch the food. He could not be fed with metal utensils or he'd just not eat. Chicken nuggets became a no no, too many crumbs in his mouth and forget about him touching them! He was unable to actually wash his hands in water but, could take a bath just fine. Noises did not bring out the best in him, which always struck me as funny because he's been loosing his hearing little by little since birth. By 3yrs old, I knew enough was enough. He'd stopped napping completely before he hit 2, he was now LITERALLY spinning all day. Or jumping all day, or running LITERALLY from one end of the house to the other, ALL day!! If these seemingly odd things at the time, were not met with and cut off at the pass, he would loose it. Taking him out of the house was even worse, he would constantly complain about the lights in the stores and how they bothered his eyes. You had about 10 minutes tops before he would meltdown to leave. He would perseverate if we took different ways to and from the stores, a relative's house, etc. He began to have clothing issues, where tags, seams, etc where he would scream and cry that they were hurting him. The list is really endless but, needless to say that when this begins at 1yr old to me, this is not a learned behavior!!

JD, my youngest, it takes two people to change his diaper, he does not register where he is in the space around him most of the time, how his body moves. He does not register getting smacked in the head, sounds don't bother him in the least. He cannot seem to tell the difference between hot and cold. He will over stuff his mouth at every opportunity and not out of hunger. He would eat all day if I let him! So, he eats every couple of hours. He is constantly seeking input, needing to always be on the move. Again I could go on but I will spare you all the pain of going on and on.

To prove my point, that this a NOT a learned set of behaviors, my little sister used to introduce DW as "the most well behaved boy you'll ever meet"!! I am not a dictator but in the house, we have rules and discipline is a high priority. With a stepson who had ADD, there was just no other option. So, it's not like the kids have the run of the house. Especially when DW came up with TS, ADHD, OCD, etc. Discipline became the backbone to the house. That's not to say that we don't have our days and our life is perfect, far from it really. It is just show that it is not a foreign concept.

Another thing about SPD that most don't know, it is usually genetic. Though they cannot find the gene, or the marker. They cannot even see it on a brain scan but, it is noticed to run in families. For example, it does run in mine. Though back then, SPD was less well known my little sister and I had it. My little sis, could not handle the feel of jean hugging her hips, nor the feel of jello in her mouth. I would scream and physically fight with my mother at a whopping 4yrs old over my socks. The seams felt like razors across my toes. I hated the feel of the wind on my bare arms, and legs during summer but preferred to wear shorts inside, even during the winter. I could go on but, would be here all day. The point really is to show that this is not behavioral, it is not a learned behavior it is how people, these children are wired!

Lastly, the signs that people almost immediately recognize as autism are those of SPD!! It is not questioned then. When it comes with a comorbid condition like TS, ADHD, OCD, etc. Mothers and children have to fight to get the recognition that they deserve. They fight to get their children treatments, to get this recognized in some way by the insurance companies. Most of the time also battling friends, relatives, school systems and even strangers! People who maybe trying to help by offering their opinions and advice, who have never heard of it, who do not see what these kids go through daily and are going off what they know from their own limited experiences or lack of knowledge. The only thing that has shown to help children with SPD is Occupational Therapy. It can take years and a lot of DAILY intensive therapy to make progress.

For anyone that actually reads this post, we are now halfway through Sensory Processing Awareness month. I urge you to get online and research, ask a parent, talk to someone. Get informed. Do your part to pass on the information and knowledge.

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