Sunday, March 25, 2012


Purple Day is tomorrow. Epilepsy awareness. Jacob was weaned from his anti-seizure medication about four months ago and has been seizure-free for over a year. Thank you God. Thank you Dr. Brown. Thank you Jay-juh.

I barely remember Jacob before the age of six months. If everything is as it should be, perhaps I was not meant to remember. My un-awareness of epilepsy would not have served me well. My war chest needed to be filled with research and specialists, not squishy, fuzzy thoughts.

Wednesday, March 21, 2012

Say What?

I have been reading the guest posts at Team Aidan ( from the series Faces of Epilepsy. I used to think that epilepsy meant grand mal seizures. My first experience with epilepsy was 10 years ago when I was a much younger teacher and one of my students walked over to me to ask a question and then slumped down to the floor shaking. I had the school call 911, moved the chairs and desks out of the way, and cradled my student's head until the paramedics arrived. I actually saw him a few weeks ago at Best Buy.

When I saw Jacob's first seizure, I looked up "tics" and "convulsions" in my What to Expect book. I had no clue. I was confused when I learned that Jacob had Infantile Spasms AND epilepsy. Clueless. Ignorant.

Please visit Team Aidan for some awareness, education, and inspiration.

Monday, March 19, 2012


"Bruh-Bruh... tae... seat... beht... off". (Brother take seat belt off.)

"I... wan... ehwmo... jew... pea". (I want Elmo juice please.)

"Nigh-nigh. Dar... ow... side. Sun... go... nigh-nigh. Puh... jym... on". (Night-night. Dark outside. Sun go night-night. Put jammys on.)

"Pay... ow... side... get... home". (Play outside get home.)

Jacob's word combinations are growing.

His body is stronger. He is running. He is lifting both arms up in the air, at the same time, straight up to the sky.

He is following directions and redirection.

He is becoming Matthew's playmate, his friend.

Wednesday, March 14, 2012

Fend Be No No

I was in the Principal's office. Not at my school. At preschool. And not for Matthew. I had a feeling. Jacob has been misbehaving. He has been telling the teacher "No! No! NO!" and has been disruptive during circle time. The first meeting about Jacob where I did not cry. Matthew and Jacob have virtually reversed roles over the past few months. My naughty boy is more angelic and my angel... at home, at school, and even at Special Olympics - he has been throwing the "stick" that he is supposed to be running with during the relay.

Naughty is a choice and Jacob is making choices independently. He is using his ability to reason to decide how he chooses to behave, the same ability that will allow us to redirect his behavior. He is developing... normally.

He is tattling on his friends. "Fend be no no". He says he wants " buhd poop" for dinner. He calls everybody "baad boy" when he gets in trouble.

Jacob's special education teacher at his other school is going to observe him next Monday and discuss some strategies with his teacher. I believe in freedom and independence. I also believe in conformity. I want Jacob to be able to adapt to any environment and to understand "the rules" of interaction.