Thursday, April 18, 2019

Is Ignorance Bliss? Part II

I was looking at my old school report cards, I.E.P.s

(Indiviualized Education Plans - meeting had every year which I barely remember as I'm sure I tuned them out most of the time as it was my mom talking with the teachers about me and requiring me to agree with whatever they were already doing over and over with little understanding of it all. I did understand some of it at the time, but much of it like the reasons given for me to recive services and why went over my head)

and some medical records from when I was very young (birth, 11 mos, 6 yrs, 7 yrs).

My Kindergarten teacher (one of my favorite teachers as a kid) wrote a letter to someone either at the school or related to my stuff back then (I had almost a year of Language and Speech Therapy before Kindergarden). In the letter my Kindergarten teacher expressed how amazing she thought 6 year old me was and wanted me tested to see if I was a genius (we didn't know back then that I was Autistic). She did comment on my having what was repeatedly called an "Audio-Visual" problem where in my hearing was normal(they tested for that) but I had trouble with following directions as if I didn't hear them or didn't remember they past having heard them. Another term that shows up through the records is "Short-Term Memory" impairment(actual word meant the same but started with 'd' - not delay or disability or disorder).

I only came to understand this fact of my life in my mid-late 20's and until looking at these papers I did not have a name for it or know it was a short-term memory problem.

I was told by my doctor(who was formerly one of my pediaritions) that I had Spastic Diplegia in my legs - I was in my late teens - early 20's then and had no memory of hearing that term or diagnosis before. In the records from when I was tested at age 6 the same diagnosis is discribed and clarified to as a form of Cerebral Palsy.


Wednesday, April 17, 2019

Is Ignorance Bliss? Part I

I was born November 1984 in California, USA. I was due early March but due to my mom getting an infection (due to my twin not forming right after the zygot stage and causing the infection). I was born st 29 weeks gestation (the doctors had thought I was 27 weeks along before I was born but they were wrong).

Being 29 weeks was better than 27 weeks survival-wise by mid-80's medical knowledge(still better now but medicine is also better now).

I was on a ventilator for a long time and got HepB tainted blood via a blood transfusion (It is believed I had HepB for a short time and recovered. The records are less clear on if I got it or if it was a false positive.)

At birth I weight 1 lb. 14 oz. and was 12 inches long.

I was in and out of the hospital a lot as a baby and toddler. Being premature my body was not fully developed when I was born. Everything was formed and somewhat functional but not at the level of a fullterm newborn.

From the start it was known that I had bad eyesight. How bad would be more fully known as I grew older and randomly felt like telling my family(several issues didn't come up very early as I assumed my vision was normal or that the issue was already known about).

As a premmie baby it was expected that I would be behind my peers developmentally and it was assumed that I'd eventually catch up to them.

At 1 year of age (partly due to being hospitalized at 11 months old for pneumonia) I was not able yet to sit up unsupported as other babies of that age can. I lesrned to walk at 19 months old after I was able to ditch my oxygen tube needed had since birth. I still had weak lungs and would need to use a nebulizer and inhalers for my Asthma until well into elementary school age. Stopped the nebulizer by end of elementary and stopped needing an inhaler at school by High School. (After having Pnemonia as an adult in March 2011 I once again have a nebulizer and occasionally use it instead of my Alburterol inhaler in the evenings during bad Asthma flare ups - when the weather changes every Spring and Fall my Asthma gets bad).

Asthma was the only health problem I had to my knowledge as a child. I knew I was born premature and I had Asthma, that was my identity as a child from a young age. I would introduce myself to other children with "I'm (name). I have Asthma. These scars (largest lays across where the bend of my right elbow bends inward and others are between elbow and wrist) from when I was born prematurely as a baby. I have scars around both of my ankles from when the doctors did cut-downs on my legs when I was a baby."

I only knew they were from cut-downs as that is what I was told when I asked my mom one day what they were from. My mom seemed suprised that I did not know. She did not explain what cut-downs were for or anything so 7 year old unknowingly Autistic me assumed my feet had been cut off and reattached for some unknown reason as an infant for a short time until I shared this logical to me notion with my mom and she tokd me that was wrong. We did not know I was o  the Spectrum then, we wouldn't know until 2010 and it wouldn't be confirmed by a doctor until Dec. 31st 2011.