Thursday, July 30, 2009

E F P T O Z.....




As most of you know, we made the decision about this time last year, to take Josh and Jameson our of their ESL school in order to homeschool them. Josh has done really well. He is catching up with math. His reading has improved tremendously.

Jameson has continued to struggle.

In the beginning, we were able to justify some educational problems (and rightly so...) with adjustment, previous malnutrition, English as a second language learning, etc, etc, etc.

We researched a lot of issues with dyslexia and learning disabilities. I was convinced she has some ADD or something. It is so difficult to assess for learning disabilities when she's only known English for what? 18 months? I would be completely dyslexic and every other kind of lexic if I were learning Amharic.

In discussing this with a friend, I was put in contact with Intensive Reading Interventions. Jameson was evaluated earlier this summer by the wonderful and awesome Ms. Angelique. And while we are still working on an official educational plan, she did recommend right away that we get Jameson's eyes checked by a developmental vision specialist. She also found that Jameson has significant auditory processing issues. Once again, the English as a second language issue makes this a little fuzzy. Jameson had significant problems processing what she heard. She could hear it, but not repeat it back, not give a broad idea of what she had heard etc. Her brain is having problems processing what she's hearing.

We were referred to the Vision Enhancement Clinic. Here is where things get a little confusing. I know right? I'm already confused. Initially the wonderful Dr. Pierce found that she was significantly near sided. Like as in 20/100. Even though she had 20/20 vision at a regular vision screen 10 months ago.

She had significant problems with accomodation. Accomodation is the ability of the eye to change its focus from distant to near objects (and vice versa). This process is achieved by the lens changing its shape. Accommodation is the adjustment of the optics of the eye to keep an object in focus on the retina as its distance from the eye varies.

She had significant problems with spasms in her eye muscles. She had significant problems with eye teaming and eye tracking. They did a lot of tests and dilated her eyes. The purpose of dilating her eyes was to check for some diseases that affect the retina endemic to Africa. Once he dilated her eyes, he rechecked her visual acuity. Now he found her to be far sighted. A completely different prescription than previously thought. He said he had only seen this a handful of times. His only explanation of this is that her muscles in her eyes are so weak and spasming so frequently that she is going from being far sighted to near sighted frequently.

We are supposed to go back next week to get her eyes rechecked once again. I really appreciate the fact that Dr. Pierce is intrigued by her case. He's going to do some research as well as figure out what it actually going on with her. He mentioned STREFF syndrome. I don't know if this is an official diagnosis, but it sure sounds like what's going on with her.

Here's the definition of STREFF Syndrome - "This functional vision loss is also known as Non-Malingering Syndrome. Signs include reduced visual acuity in both eyes at distance and near. The visual acuity at near is more reduced than the distance acuity. The syndrome is associated with a visual or emotional stress occurring in the child's life. It is more prominent in girls (ages 7-13) than boys. Treatment includes a low plus lens and/or vision therapy."

We know these things:

  • Jameson is getting glasses.

  • She will be having vision therapy once a week for up to a year.

  • She will be required to do visual exercises at home.

I feel a mixture of emotions over this news.

I knew there was something not quite right. I knew that she should have been progressing much quicker than she has been.

In one breath, I feel relief that we are going to get to the bottom of it. We are going to make it so much easier for her to see, hear, and learn. We are finally getting answers.

In the next breath, I feel so much guilt for so many things. So much guilt for being frustrated with her all these months when she had problems with her schoolwork. So much guilt for not getting all of this testing done before. Although I don't know that she would have had the English skills needed to get the testing done.

Dr. Pierce asked where she was going to school. When I told him we were homeschooling, he replied that his next suggestion was going to be to pull her out and homeschool her. He said that would make a big difference because she will be able to go at her own pace. I was so grateful that we made that decision last year instead of facing that now. I really would be kicking myself if that were the case.

I also feel so blessed that she is here. I can't imagine living with these problems in Ethiopia. There would have been no specialist, no therapy, and probably no glasses.

We are just at the beginning of this journey, but we are full of anticipation and joy of the changes it's going to make for Jameson.

4 comments:

Sandee said...

All things DO happen at the right time! Awesome Momma, getting her what she needs. Throw the guilt away!

Laurel said...

My eldest bio. son "passed" all the vision screening for years, but couldn't learn to read. We finally heard about a pediatric opthamologist who did vision therapy. Guess what? He learned to read so quickly, after getting his glasses (at about age 11).

Yes ... I know that mommy guilt. I'd been homeschooling him for years, and had no idea that it was his eyesight that was causing his inability to read.

Praying that this is the ANSWER for many of her difficulties.

mama of 13

Dominick M Maino, OD, MEd, FAAO, FCOVD-A said...

For more information on optometric vision therapy go to http://www.covd.org. For more information on children's vision research go to http://www.mainosmemos.blogspot.com and search "pediatrics", "child", etc.

Donna said...

We have one with auditory processing issues too! Though even now, 3 1/2 years post adoption from an "English" speaking country, her therapist says it would still be hard to confirm with testing.

I must say that after 1 year of therapy it is amazing. I can understand my daughter, not everyone can. And she is starting to interact with other kids and not be afraid of rejection because of her speech.

We have vision processing issues too, but have choosen to jump in one pool at a time with her.

praying you find the right path-
Donna