Saturday, April 24, 2010

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.


rachel said...

Hey girl! Hang in there. It nothing you did! One you get a diagnosis, go from there! Let me know if I can be of any help. Although I work mainly with children on the autism spectrum, we work with children that have other delays as well. All of her "symptoms" are things that I have dealt with. Don't worry just look forward. You didn't do anything wrong. And yes, doctors definitely do not take enough time with patients. So many pediatricians do not recognize the delays in children. Autism communities are trying to get pediatricians to recognize these symptoms. Hang in there! If you need to chat I'm here!! :) PS...I don't know if it will say my last name it's Rachel Castelletti

hokgardner said...

I walked out of a doctor's office yesterday because I was upset at a lack of communication and poor treatment. Amazingly, I got a call from the doctor herself to talk about what happened.

We all have to be our strongest advocates. Good for you for being such a strong one for Ella. She's very lucky.

Anonymous said...

After reading the symptoms I now think I have that too!

Holly said...

Thank you Rachel. And Heather.

Anonymous: are you thinking about how you act when you are drunk? Cuz that doesn't count.

Janet said...

My dearest Holly...God created Ella just the way she is for her good and His glory. That said - it is so hard when our children aren't "perfect". We don't want them to have difficulties in life. Ella is precious. Ella is wonderful! You will do what you need to do to help her when you find out what that is. God knew that you were the best mommy for her and that John was the best daddy for her and that Caleb, Ben and Daniel were the best brothers for her. Continue to love, enjoy and teach her. Be her advocate. Do your best to Research and follow through with what you find out. But not blame yourself. Trust in the Lord and do not lean on your own understanding. His burden is light. Rest in Him. He can handle your questions and doubts. Give it over to Him and then walk in the way He leads you. In the meantime....I'm here for you and you have many friends and family that love you and will be there for you too!
Much love to you my dear friend!

Claudia Jabieski said...

Don't be dismayed. You are a wonderful mommy.... Sometimes these things happen. My Dara is on the autism spectrum, and even though she is a little different, she is a joy every day. God has a plan in this. Praying for you... If you want, you can call Dr. Ruth Goldberg. She is a child psychologist that specializes in autism spectrum disorder as well as other disabilities--she's VERY good. Ella may not have autism spectrum disorder, but at least Dr. Goldberg can head you in the right direction- and probably within a week or two. You can use me as a reference if you like.
With Prayers,

Marinka said...

Here's what I know.

Although it's impossible not to, asking things like "is it my fault" will never, ever help you. Or Ella. Or anyone. No amount of self-flagellating for wrongs real or imagined will change anything.

You are advocating for your daughter and it shows. I am a huge, huge believer in speech therapy. My daughter had it for three years (her symptoms were similar to Ella's). She's 11 now and you'd never know that she had a speech issue.

best of luck to you. I know it's not easy. But you're doing a really, really great job.

Anonymous said...

Oh it counts!

Traci Michele said...

Can I just say.... that I loved this post. I love it all. I agree wholeheartedly....

1) Doctors rush to fast
2) We are forced to self-diagnose
3) Ella is precious and adorable
4) And this comment made my night!:

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.

I laughed out loud. A couple times. Riley asked what I was laughing at. I just said Mommy's friend said something funny.... thank you for making my night!

Holly said...

Thank you so much for al of the encouraging comments! It's good to remember that there are others who have been through similar situations (and much worse, of course.) I appreciate the prayers, really appreciate insight and advice, and I am just so thankful for my friends:)

Anonymous said...

I don't know you but think your blog is pretty cool. A friend posted this on FB just this morning and I thought it might help... It's Beth Moore's take on the OPPOSITE of Philipians 4:6-7 from the Bible: "Do not be calm about anything, but in everything, by dwelling on it constantly, with thoughts like 'And this is the thanks I get', present your aggrevations to everyone you know but Him. And the acid in your stomach will cause you an ulcer and the doctor bills will cause you a heart attack, and you will lose your mind." Praying you get through this and find resolution quickly!

Kim Werth said...

You are so amazing! I will pray for you and Ella.

Julia said...

I'm a little late posting on this, but wanted to let you know I am keeping Ella in prayer.