About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Tuesday, February 9, 2016

Grieving - Awake or asleep?

It's 11:00pm here and I can't even begin to clear my mind enough to go to sleep. Not only am I thinking about all my mom duties for tomorrow, when to get to mass for Ash Wednesday, how much my toe is throbbing because I dropped my KitchenAid mixer bowl on it today, how much I would love to sneak into the pantry and eat a Twinkie we have in there for valentine's treats, the amazing conversation I had with an IEP advocate today, but what is keeping me awake has to be that I'm replaying the conversation with the principal over and over in my mind.
I had requested a meeting with the principal at Jayen's school, to talk about the possibility of retention for him. This year has really been such a bust for him. Not only have the days been incredibly short due to budget cuts, but he has had a teacher that stopped showing up, a substitute that was less than desirable, the teacher resigning, then finally getting a teacher that is more than just a warm body. He's only has class for two hours and 45 minutes. Of that time he is also receiving occupational therapy, speech therapy, and physical therapy as well as his special education services. There has been no time in the day for him to actually be part of the Kindergarten classroom and activities. I'm not sure what the best placement is for him next year, but I really wanted the principal to hear my side of the situation. Why I feel my son would benefit from another year in Kindergarten. But what I left feeling was that his mind was made up long before I ever started talking. He asked me what my pros and cons were and I honestly shared. I spoke of the one con I had and the hundreds of pros, but he continuously took my one con and repeated it over and over again. He didn't care about any of the things that have happened this year. He spoke of how he sees Jayen's future. He reasoned that he only retains students if he can see that a year would bring them back up to speed, that after one more year of Kindergarten Jayen still wouldn't have all the necessary Kindergarten skills to move on to first grade.
I'm so taken back by this and can't sleep because those thoughts are running a marathon through my head. How can anyone say where Jayen will be in a year? This is the first school year he has been seizure free for this long. He is making tremendous progress! And with the right support, AND WITH THE RIGHT SUPPORT I feel he could catch up. I know Jayen will struggle for everything. I know it will be harder for him to learn than his neuro-typical friends. But who gets to say where he will be?
The thoughts keeping me awake are not only who gets to make that decision, but if I am being naïve about where he will be in a year, five years, fifteen years from now. What does Jayen's future hold for him? What kind of life will he live? There is always a grieving process after receiving a devastating diagnosis for your child, but I think I am still grieving. I wonder when I will stop grieving. I wonder when I will wake up from this nightmare. Maybe I'm not having trouble sleeping, maybe I'm having troubles waking up.

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