why she’s so tired

Another look into our lives:

I swear if I get another phone call asking me WHY is Emma so tired? And implying her schedule is off, and it’s my fault...
How many times must I remind those in education that my daughter is a hormonal teenager who deals with her autism, and sensory processing issues, anxiety, abnormal focal discharges (and sometimes actual seizures)coming from her occipital lobe (minimized by medication,) oh! and the medication causes sleepiness and makes her hungry All The Time... ****but we DEFINITELY pick her eating a lot😁😁😁 over the debilitating side effects of medications they had her on just a year ago, that caused her to lose 25 pounds (at 12 years old then,) her hair to fall out in clumps, her verbal skills were almost nonexistent, she hallucinated, she began to wander and we had to install Home Security, she regressed to 2 year old behavior, until she could not get out of bed (her brain became inflamed and swelled,) and her gait actually changed (this is why she walks “oddly “ now, and she does physical therapy in addition to occupational and speech language.) Her changed gait, and how she distributes her weight now on the insides of her feet, have caused her joint pain. ... And before all the medications, she was having literally hundreds of seizures per day, and she has much memory loss of that time.

So, PSA, our girl is a WARRIOR. We don’t make excuses for her. And we celebrate every time she progresses.
My biggest concern is not that she be an honor student- not at this time.
My fight is for her to have school days (and days in general) that don’t end in biting her nails bloody and rocking violently.

My daughter is brilliant. Her mind amazes me. But I know she will not reach her potential if she is stressed every day.

She’s going to go places. For sure. But we need to remind ourselves of how to best support her and what kind of teaching she responds well to. Not just at school, but at home too. I am ALWAYS reading up on real- life autism and epilepsy stories and doing my own research. Because I NEVER know it all. I’m always learning.

** She hasn’t felt well this week. Started out with one thing, and now it’s something else.
Sometime she can tell me a symptom or two, but I have to do detective work and figure it out!
She told me Monday night finally after being “off” all day what was actually wrong, and she was in tears. She said she “didn’t know what to do,” “ didn’t know what words to use,” and she had not been able to tell me. We have a good pediatrician who is able to help over the phone and in office as well. (Even though I did get mad at the receptionist this week 😂😂)

^^ She is fine, by the way, or will be soon. 😁💕

** We’ve got good people around us, who support us and love us, who encourage and help her learn new skills (all kinds of skills she needs!) I am so grateful.

Posts like these are my way of giving others a glimpse into our lives, and to provide awareness.
We are never asking for sympathy.
A little empathy and understanding goes a long way though. ❤️

#autism
#epilepsy #focaldischarges #sensoryprocessing #ongoingtherapy #occupationaltherapy #physicaltherapy #speechlanguagepathology #warrior #mygirl #educateoureducators