What grade am I in?

Here’s a sad question I got from Jack in a text a few days ago. He asked me what grade he was in, never gave me an explanation as to why he was asking, however, I’m pretty sure someone in a chatroom asked. It got me to thinking about old times, the times when Jack went to school. How he loved the social interaction with the other children, the games, different activities, but definitely not the work-he just was not into doing schoolwork at any grade level! Of course, most of his peers thought Jack was weird, but he actually loved each one of them & spoke fondly of his classmates everyday after school & still talks about many to this day. As I’ve mentioned in other blogs, Jack started his elementary years at a small, private Christian Church. It was truly a beautiful experience for us all. We knew he was being watched so carefully & loved. After two years there, he began public school where we knew many of the teachers & staff & were only a mile away from work & our house if there was an emergency. Surprisingly, Jack never had a seizure at school! Even though I knew Jack was being hovered over by his assistant & others, each day he got out of my car to go to school, my day was filled with fear. Fear of seizures or behavior outbursts.

By the time Jack made it to fifth grade & after three personal assistants, our worse fear came true. Jack had a physical outburst in class. He was being disciplined by his assistant & rightly so, he was doing something he wasn’t supposed to do. We were always honest with those caring for Jack about his behavior. We explained to everyone that had contact with him how he can rage & how intense the rages can be. However, you really don’t know how bad something is until you experience it personally. It’s like with my blogs, I can write about Jack’s musings & the torture he puts us through, but you absolutely would not believe how bad it is until you have a firsthand experience of his wrath. His assistant was a tiny thing, never saw the attack coming. Thankfully, she wasn’t injured too badly. Lee received the dreaded phone call, he was expecting a seizure, not THE phone call. At that time, we made the joint decision to take Jack out of school & homeschool him. We always said if Jack ever fought at school, we would pull him out. We could not have something else to worry about. We could not live with ourselves if he injured another student or a staff member. In 2011 of Jack’s fifth grade year, we pulled him out of school to attempt to homeschool. Homeschool was a true struggle, he had zero interest in the work or learning. Mornings were always a beast when Jack was in school, I had to get the doctor to write a note so that his school day could start later which was 10am. At home, we tried to stick with that schedule, but he just got more defensive since I was his everything; Mama, caregiver, chef, & now teacher was added to the list & he was not having it. I had crayons & pencils thrown at me, papers crumpled & both were out of frustration. It was after several weeks of struggling every.single.day. with this child to homeschool him, that I decided it was no longer worth my safety or sanity to do this. I tried to make activities educational by sneaking in some learning. We would go to our local library a lot, play educational games on the computer, but instructional learning was/is not for him. I faced ridicule from some about this choice, but how could I put other people in danger, especially children, the staff, & then myself. I was not going to put myself in harms way unnecessarily. School is not for everyone, particularly people that have severe behavior issues like Jack.

How excited we were when Coleman graduated in May. He worked so “Berry” hard graduating with dual diplomas, one for high school & also an associates. Of course we were all smiles in the pictures, however, the smiles were slightly broken. One, we have a child that will never graduate & two, Jack never wants to participate in family activities so he wasn’t there for pictures or to celebrate the occasion. Our family pictures have gone from 5 to 4. As a parent, this creates a great ache. The ache isn’t the same as a parent that has lost a child (I’m not trying to compare it to that), it is just a constant sadness to know that family gatherings are one less & the proof is in the pictures, memories, & atmosphere.

The text from Jack that said “what grade am I in”, reminded me of the book “Are you my Mama?” This is a children’s book about a bird that hatched while his Mama went to search for food. The poor bird was unable to fly & was unsure about who is Mama was. In his search for his Mama, he asked different animals unlike him if they are his mother, & of course none of them are. It reminds me of Jack because both are such innocent questions, both are questions each should know the answer to, both are lost. Jack is lost & trying to find friends & a girlfriend online each & everyday. Unfortunately, in Jack’s search for friends, he doesn’t encounter the kindness the bird found in the wild. Jack unearths the evil of the internet. People continuously making fun of him & the sad part is, he doesn’t know that they are. These people tell him to say ugly words & he does it. They ask him for money via iTunes cards or Visa gift cards, which creates a whole other problem for us. He is always asking for us to buy him gift cards so he can give to these people. Jack doesn’t know that we know this. I discovered it by snooping. Jack is bursting at the seams to unleash in the real world. In his real world, it would involve traveling to Europe or Australia & meeting some of the “friends” he has met on chatrooms & being a singer. He thinks he could arrange this all on his own & he probably could to a certain extent. I think Jack’s life is quite paradoxical. Here we have a nearly 17 year old son that has the body of a man, but yet a mind a toddler & a teenager at the same time. We deal with multiple stages of childhood growth that most experience from birth-teenage years on a daily basis. Ultimately, we don’t know what to do with Jack. As aggravating as he is, as confining as he is & in turn, makes us, as strong as he can be, as demanding as he is, can we really let go & place him somewhere? I go back to this topic because the conversation has resurfaced between Lee & I. I know what would happen. He would be placed & then go nuts. He would refuse to take his medication & be tied to a bed because of threatening behavior. So I ask myself, how can I do that? We’ve come so far in his seizure journey to lose seizure control. He’s only having a seizure about once every 6 weeks now, which is an amazing feat for him, especially after having 100’s of seizures every single day for so long. There is no easy answer, heck, not even the slightest hint of an answer. All we know is, that this is hard. We want easier lives, we want peace of mind, we want joyful lives, but most of all, we want a happy home. As I hear the echoes of Jack’s text over & over in my mind, “what grade am I in”, I am reminded of his innocence & cling to the hope that those mean, hateful “friends” will not rob Jack of all his innocence & I pray that our future will become clearer.

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog