What's that you say?

>> Wednesday, November 12, 2014

Recently, I have been reading posts that other special needs parents make on social media with a different feeling:


Not for them, for my Bug.

When I say Bug is nonverbal, people nod knowingly and say: that's OK he knows what we mean.

No, actually, he does not.

He can't follow simple directions, he is just now responding to his name on a regular basis, he can not pick out letters or numbers or colors. His school thinks he is, but there really is no double blind in a 50/50 option. When I ask him a question and he seemingly gives a positive response, I then REPHRASE the question creating, based on his previous response, what should be a negative. He reaffirms the positive. Or should I say, he follows the same pattern.

He has, just lately, been a little more responsive but when I read these posts that say:

"My child is in a wheelchair, tube-fed, and can not move at all but communicates his/her needs through electronic devices"

I realize how profoundly non-commutative Bug is. It makes me sad. I have no clue if he is pain, or happy (aside from a smile or a newly-found giggle), we do not know if his tummy is sick, he is not engaged in our world most days, he just spins.

Does that sound like despair? Today it is. My child, who CAN walk, and CAN eat is not present, is not *here*. He *is* though and we love him
but it still hurts my heart.

He is so lovely and so...trapped.


What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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