Q - When did you first know you were livin' with an ism?
A - Since I was three.
Q - How did you know?
A. Well, you see, things just didn't seem right. My meltdowns would last longer than most 3-year-olds. Remember they were like 5 hours.
Q - Yes, I remember. What do you remember feeling about yourself then?
A - I felt sad and a little bit embarrassed.
Q - Were meltdowns the only thing that didn't seem quite right?
A - I totally remember tearing things up, especially in my room. Because my body wouldn't hold it all in and I had to do something. Other kids would spill things and not get upset, but I would always have a big tantrum if that happened to me.
Q - Why would spilling something cause you to have a tantrum?
A - It was really wet, cold, and smelly (because juices smell) and it didn't dry quickly so I just started crying because I didn't know what to do.
Q - Why couldn't you stop crying quickly?
A - My brain kept screaming, "IT'S COLD, IT'S SMELLY, IT'S GOING TO SEEP INTO YOUR SKIN." I couldn't hear the part of my brain that tells me "This is fine. This is no big deal." I couldn't hear that then.
Q - Were you ever afraid of things?
A - I was scared of the dark because I imagined things. And I also have a thing called silent migraines that sometimes scared me. I didn't know what they were then. They are these little dots you see that squiggle like worms and come at you.
Q - Are you afraid those now?
A - No, not really. I've gotten used to them because I know they are caused by my allergies.
A - Water really frightened me too. I would not put my head in water.
Q - Why were you afraid of water?
A - Because I was afraid it would get in my eyes or that I would sink.
A - I was also afraid of bees. In fact all types of bugs, especially worms. I was even afraid of my books. I thought the pictures would come out at me.
Q- What other things bothered you at three?
A - Loud noises made me feel trapped, alone and tired. Textures, like jeans and turtle necks would make me feel hot, sweaty and not able to hold in my emotions. Toys that moved frightened me because I thought they would jump out at me.
Q - So textures, fears, meltdowns all bothered you as early as age three. Did you think everyone felt this way about those things?
A - No, I knew everyone else did not feel this way about these things. I felt embarrassed, left out and like everyone was angry at me.
Q - What did you feel good about yourself at age three?
A - That I told the truth. I LOVED to do art. I like that I can remember things that most people forget about at age three. I could remember mom's shopping list or directions just by hearing them. I liked to watch the news only (the morning news shows). I didn't like cartoons. I called Sesame Street - "Stress-A-Me Street" cause that's how it made me feel. I didn't like Veggie Tales either.
Q - That was also the time when you memorized the entire movie of The Sound of Music. What did you like about that movie?
A - They sang. There were lots and lots of children. There were no cartoons. And there was a fun person that came to live with them.
Q - At age three, what do you remember about your faith?
A - I had a dog named Gigi who died back then and I would say that Gigi died on the cross like Jesus because I thought everyone who died - died on the cross.
Q - Did you understand what Jesus' death on a cross meant at age three?
A - Not the whole picture, just little glimpses.
Q - Did any of that help you when you were feeling alone, embarrassed, or trapped by your feelings?
A - Sometimes. My brain can't think right now because my hypoglycemia is in control right now.
We need to end our interview for now to eat because hypoglycemia makes Ellie's brain sometimes refuse to cooperate if she doesn't eat on time - and it's time.
Hope this is helpful.
A - Since I was three.
Q - How did you know?
A. Well, you see, things just didn't seem right. My meltdowns would last longer than most 3-year-olds. Remember they were like 5 hours.
Q - Yes, I remember. What do you remember feeling about yourself then?
A - I felt sad and a little bit embarrassed.
Q - Were meltdowns the only thing that didn't seem quite right?
A - I totally remember tearing things up, especially in my room. Because my body wouldn't hold it all in and I had to do something. Other kids would spill things and not get upset, but I would always have a big tantrum if that happened to me.
Q - Why would spilling something cause you to have a tantrum?
A - It was really wet, cold, and smelly (because juices smell) and it didn't dry quickly so I just started crying because I didn't know what to do.
Q - Why couldn't you stop crying quickly?
A - My brain kept screaming, "IT'S COLD, IT'S SMELLY, IT'S GOING TO SEEP INTO YOUR SKIN." I couldn't hear the part of my brain that tells me "This is fine. This is no big deal." I couldn't hear that then.
Q - Were you ever afraid of things?
A - I was scared of the dark because I imagined things. And I also have a thing called silent migraines that sometimes scared me. I didn't know what they were then. They are these little dots you see that squiggle like worms and come at you.
Q - Are you afraid those now?
A - No, not really. I've gotten used to them because I know they are caused by my allergies.
A - Water really frightened me too. I would not put my head in water.
Q - Why were you afraid of water?
A - Because I was afraid it would get in my eyes or that I would sink.
A - I was also afraid of bees. In fact all types of bugs, especially worms. I was even afraid of my books. I thought the pictures would come out at me.
Q- What other things bothered you at three?
A - Loud noises made me feel trapped, alone and tired. Textures, like jeans and turtle necks would make me feel hot, sweaty and not able to hold in my emotions. Toys that moved frightened me because I thought they would jump out at me.
Q - So textures, fears, meltdowns all bothered you as early as age three. Did you think everyone felt this way about those things?
A - No, I knew everyone else did not feel this way about these things. I felt embarrassed, left out and like everyone was angry at me.
Q - What did you feel good about yourself at age three?
A - That I told the truth. I LOVED to do art. I like that I can remember things that most people forget about at age three. I could remember mom's shopping list or directions just by hearing them. I liked to watch the news only (the morning news shows). I didn't like cartoons. I called Sesame Street - "Stress-A-Me Street" cause that's how it made me feel. I didn't like Veggie Tales either.
Q - That was also the time when you memorized the entire movie of The Sound of Music. What did you like about that movie?
A - They sang. There were lots and lots of children. There were no cartoons. And there was a fun person that came to live with them.
Q - At age three, what do you remember about your faith?
A - I had a dog named Gigi who died back then and I would say that Gigi died on the cross like Jesus because I thought everyone who died - died on the cross.
Q - Did you understand what Jesus' death on a cross meant at age three?
A - Not the whole picture, just little glimpses.
Q - Did any of that help you when you were feeling alone, embarrassed, or trapped by your feelings?
A - Sometimes. My brain can't think right now because my hypoglycemia is in control right now.
We need to end our interview for now to eat because hypoglycemia makes Ellie's brain sometimes refuse to cooperate if she doesn't eat on time - and it's time.
Hope this is helpful.
Beautiful!! Love you, Ellie-girl. Isms and all!
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