Ella's World

Ella is different. We know that. Something isn’t “normal.” We are in limbo- waiting for an official diagnosis. The speech pathologists strongly encouraged us to get Ella evaluated. I took her to the doctor to get a referral so we could get an appointment at the Kirch Developmental Services Center at Strong.

There is a six-month waiting period to see someone there.

It isn’t autism. Anyone who has spent any amount of time with her can tell that. She is far too social. She makes eye contact. She gives hugs. She loves to be held. She doesn’t fall anywhere on the “spectrum.”

The pediatrician didn’t spend much time with us at our last appointment. He promised to call in the referral, listened to her heart and lungs and looked at her ears and up her nose- and sent us on our merry way.

I feel so rushed in doctor’s offices. Yesterday was my yearly OB appointment. The doctor was in and out so fast, I felt mildly offended. (And a little icky.) The rush makes me feel flustered- unable to organize my thoughts to ask the questions I have been meaning to ask. And then I’m left with the thought, “Well- I’ll write it down and ask next year.” Good grief- send me a kit and I’ll swab my own cervix next time.

My dentist’s office called the other day to change my Friday appointment to another day of the week. Why? The office would no longer be open on Fridays. I’m saving my pennies to get my teeth fixed and he’s taking off Fridays. (Our pediatric dentist is not open on Fridays, either. And during the summer, they are only open half-days Monday through Thursday.)

Doctors roll their eyes when patients self-diagnose. But honestly, when we’re brushed aside, treated efficiently but sometimes not thoroughly, when the doctors don’t take the time to talk to us, what are we left with?

I think I’ve diagnosed Ella. I think she has Receptive Language Disorder. All of the symptoms fit perfectly:

• May not speak at all, or may have a limited vocabulary for their age

• Has difficulty understanding simple directions or are unable to name objects

• Shows problems with socialization

• Inability to follow directions but show comprehension with routine, repetitive directions

• Echolalia (repeating back words or phrases either immediately or at a later time.)

• Inappropriate responses to "wh" questions

• Difficulty responding appropriately to: yes/no questions, either/or questions, who/what/where questions, when/why/how questions

• Repeats back a question first and then responds to them

• High activity level and not attending to spoken language

• Jargon (e.g. unintelligible speech)

• Uses "memorized" phrases and sentences

• They may have a problem with words or sentences, both understanding and speaking them

• Learning problems and academic difficulties

It’s been compared to aphasia after a stroke.

The problem is in the brain- possibly damage caused by a head injury, a seizure, or malnutrition.

Daniel was born at 7 lbs. Ella- 3 ½ lbs.

What happened? What went wrong? Was it my fault? I’m racking my brain, trying to think of a reason. If there’s a reason, maybe I can understand better. Maybe I can help. Because, although she can receive therapy to help her cope with her communication problems, there’s no fixing this. If this is what’s the matter with her, she will have communication difficulties her whole life.
I will be told not to get worked up. Wait until you receive an official diagnosis.

Can’t do that.

Ella has speech therapy three times a week. My schedule revolves around her therapy and I don’t even know if it’s helping because they don’t have an official diagnosis to work with. It’s very frustrating. I can now relate to those parenting magazine articles that encourage parents to be their child’s health advocate.

Ella, I’m advocating for you.

I’m going to do my best to make this better.

I love you so much.