It’s not that I’m prolific, it’s that I can’t sleep. So it’s 2am, my throat is sore, my right nostril is out of commission completely and both are burning with dryness thanks to Sudafed. My ears are popping. I’m miserable.
Tammy and Grace will be here in about nine hours. I hope I’m feeling better so we can take a walk through the canals to the beach. I love walking the canals. Normally I’m too lazy to envy other people, but when we walk the canals I can’t help but fantasize about what it would be like to win the lottery and buy one of those houses.
Of course then my worst-case-scenario alter-ego kicks in and I start picturing tsunamis and giant tidal waves like in that terrible movie, The Day After Tomorrow. I wonder if there is a specific psychological disorder of phobias brought on by overexposure to disaster movies.
I don’t like tall buildings…thanks to the Towering Inferno
I don’t fly…afraid of crashing into a mountain (Sweet Dreams), or into the ocean (Airport ’77).
Blimps…no thank you, I’ve see Hindenburg
Trains & Bridges…earthquake scene from Superman the Movie
Boats — now here’s an interesting exception, though I’ve seen all the Titanics, Poseidon Adventure, Lusitania, etc… I am not afraid of big boats. I think it’s because of the buffets. Apparently I will risk death for a shrimp buffet.
But I digress…
So I’ve been thinking a lot about high school today. I got the idea to go on MySpace and Facebook and look up classmates. I’m not sure why exactly, maybe the Sudafed again. By the end of the day I had created profiles for myself on both networks though I’m unsure whether I’ll keep them. I found the person I was really looking for so I don’t know if I really want to find anyone else. No, the truth is that I’m not sure that I want to be found.
I don’t like who I was in high school and have spent the last 17 years putting that person as far behind me as possible. I know that this will come as a tremendous shock to you, my 11 readers, that I was a royal pain-in-the-you-know-what in high school. I was a religious zealot with a capital ‘Z’. Headstrong, obnoxious, loudmouthed, outspoken, know-it-all…ugh.
Now I admit that I’m not exactly a shrinking violet these days, but I’d like to think that I am a bit more restrained in my behavior. I hope that I’ve learned to use my powers for good and not for evil. I can stick up for myself if I need to, but the new J would really rather avoid confrontation. Old J thrived on it.
Since I can’t take a walk along the Venice Beach canals without speculating on a possible escape route in case a tsunami hits, it should come as no surprise that I have a hard time staying in the present as far as Hope is concerned.
We know that down the road we’ll have to deal with IEP’s and other special services for Hope. The range of cognitive abilities for persons with PWS ranges from “average” to “far below.” There is some debate as to whether the cognitive disabilities are due to the syndrome or to the fact that many infants are neglected–innocently–by parents because they tend to be so unresponsive, that caregivers don’t interact and stimulate them like they would a more typical baby. But either way, that is likely a path we are going to have to travel. One of the things we’ve read on the discussion boards at the PWS USA website is that many parents have difficulty getting their kids recognized as special ed because at the time they enter the education system they are not manifesting gross deficiencies.
Hope is already getting early intervention services, at four months old, to help us help her to develop as normally as possible. If we do things right, and if the severity of her cognitive disability is not great, then by the time she transitions over to the school district she may not technically “qualify” for special education services. We will find ourselves in the very common predicament of PWS families, trying to convince the school district that the reason our child is not manifesting deficiencies is precisely because she has been receiving special services.
And then every year it will be the same thing, IEP, behavior plans, all the things I should have paid better attention to when I took that class for my teaching credential. We’ll have binders full of documentation to prove the deficiencies of our daughter. We’ll have to be trained to be advocates for Hope, learn the law, our rights, her rights. We’ll have to be doggedly persistent, never taking “no” for an answer.
I can do all of these things. I can do them well.
I don’t want to.
I’m not comfortable yet with the idea of me as “special needs mom” — again with the movies– the crazy parents in Lorenzo’s Oil, Judith Light in every Lifetime movie. I am ferociously in love with my daughter, with both of my daughters. When I think of Hope’s future, the advocate-mother she’ll need…it just seems like a job the old Jen is better suited for. But I don’t want to go back.
Try as I might, I just cannot live in the moment long enough to forget about the future. I don’t have the willpower to resist every prediction that crosses my mind. I like who I was when Hope was born and for the first five days of her life. I wasn’t perfect, but I was decent. Now I find myself one very resistant, very nervous, lump of clay — with a cold.