Something Beautiful or Humorous: Apples that Eli painted

Tuesday, November 23, 2010

How It Feels To Be Eli


Most of you know by now that Eli has had a neurological condition his whole life (that we just found out about 9 months ago!) called Sensory Processing Disorder. The term Sensory Processing Disorder is actually an "umbrella term" for several different sensory disorders. For example, some kids over-experience their senses (like Eli), and some kids under-experience their senses, and there are sub-types. But I'm just glad to know that the things we have struggled through with Eli for so long are not because Eli is a "bad kid." There was a neurological reason he was throwing all those fits. If you suspect that your child suffers from this disorder, get an appointment with an occupational therapist and/or click here for a symptom checklist.

Part of the relief of getting Eli's diagnosis has come from being able to empathize with what Eli goes through. I came across this on a great website & thought I would share it. (It came from a presentation that the author of the website gives to adults who work in daycare and preschool.)
Imagine if:

You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.

You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair and you fell off 3 times during this training.

Your clothes felt like they were made of fiberglass.

You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.

Every time you tried to write with your pencil, it broke because you pushed too hard.

The different smells in this room made you utterly nauseous.

The humming of the lights sounded louder than my voice.

You couldn't focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.

The lights are so bright you have to squint, then you get a pounding headache half way through the presentation.

Every time someone touches you, it feels like they are rubbing sandpaper on your skin.

You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.

People's whispers sounded like they were yelling.

The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.

You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.

You had to pull the car over 3 times on the ride here because the motion makes you sick.
I am proud of Eli for the way he is coping. The toddler years were the worst, when his symptoms were most pronounced. But the good thing about where we're at now is that he is learning to communicate his needs to us.

Any parents out there of children with sensory issues? How do you cope? What are your biggest challenges?

1 comment:

LazyLimaBean said...

Hi Nat - with FB and Twitter I don't blog so much anymore but am working to make some changes on that. Today I actually posted something and notice your last post three weeks ago. .... So pleased you are learning about Eli's condition. Am sure that has revolutionized your lives!