Wednesday, November 18, 2015

Epiphany

It's funny how with just a little bit of information and seeing something from a different perspective, one can suddenly see with clarity things that were previously an enigma.

There have been very specific things that Sissy does that I've known were "off" and off enough that I'd even mentioned them to several professionals, such as the psychologist doing the IEP last year and her pediatrician. Some things that she did annoyed me to no end - constantly, and others have just become a way of life.

Some examples:

She's always last. Whether it's to come get her plate of food in the kitchen or try something new, or whatever - she's always last.

When she finally does get to the head of the line, she invariably hesitates and often even steps back, and needs a cue, usually something exasperating out of my mouth, directed at her, to get her moving again.

She never leads, has any ideas, directs play between her sisters in any way, is always in Jie Jie's shadow, following her around like a puppy dog.

Last Labor Day we went to Morro Bay. There is a huge rock in the bay. It's grey, but covered in white. Why? Seagulls and other birds live on it. It's a protected sanctuary. None of my girls could guess why the rock was white, even when given clues like, "Some animals live on the rock. Flying animals." And, they could simply look and see the birds. However, Sissy's guess was that deer live on the rock. Never mind that a deer could never even climb the rock, much less find any food there. Why did she say deer? I knew immediately. Whenever we are in the car in certain areas, I always tell the girls to look for deer, especially when we are in Yosemite. The only experience she could remember of being in the car and anything to do with an animal was that we sometimes see deer and she can only draw on what experiences she remembers.

Well, there's a reason.

It's now glaringly apparent after only 3 sessions of speech therapy, that Sissy cannot do the following beyond a toddler or preschool level:

1) look at a picture or real life scene and understand what is happening in it, much less describe what is happening

2) make inferences, to read between the lines figuratively and make predictions. Here are a few examples:

Let’s go swimming to cool off!
What season is it?
a. Summer
b. Winter

I'm hungry! What am I going to do? (She really did get this one wrong!)
a. drink something
b. eat something

A picture of a girl pointing to the sky, the caption reads, "There's something flying in the sky. It's not a bird or a bicycle."

Well, we all know that bicycles cannot fly. Birds do, but it's not a bird. What can it be? How about an airplane, butterfly, other insect, bat or balloon?

3) put herself in the place of another person, which goes beyond the lack of empathy kids raised in orphanages experience

4) cannot imagine - at all, which is why she and my other girls still don't grasp that movies are not real and that roles are played by actors who aren't related to each other, are sometimes older or younger than the characters they portray, etc...

She also rarely hears me call her name the first or second time I say it. By the third time, I'm yelling her name. Then she is angry at me for yelling at her and doesn't know why yelled.

Many of her symptoms match autism, but too many match other things as well.

So, what we have so far is severe developmental language delay, executive functioning disorder.

Because of this, Sissy is functionally illiterate, meaning: "Purely illiterate persons cannot read or write in any capacity, for all practical purposes. In contrast, functionally illiterate persons can read and possibly write simple sentences with a limited vocabulary, but cannot read or write well enough to deal with the everyday requirements of life in their own society.” Sissy is, of course, also functionally illiterate in her native Chinese dialects. I'm sure there's going to be more.

I've requested testing and, unfortunately, I'm having to fight for it. Go figure! The common belief is that the connections in the brain are still forming and that new neural pathways can still be laid down. Work with stroke victims and others who have suffer traumatic brain injuries proves this.

All of this explains why she appears to be able to learn and gets many questions in workbooks correct, but she can't apply any knowledge or any of her experiences to real life. None at all. It's like things never happened. Therefore, she's not able to make any developmental progress.

Sitting there watching the speech therapists work with her is excruciating. She can't do ANY of the exercises they give her so they then must give her assistance to make her feel like she was successful so she doesn't feel badly. I see the looks on their faces and glances the two therapists exchange between themselves and with me. I think their current goal is assessment and that once they find the level she's at, they can put together a treatment plan. They've admitted that Sissy is a completely unusual and difficult case and something they've never seen before. I hope they will admit if Sissy is beyond their scope of help so we can get the kind of treatment we really need.

1 comment:

Penny said...

K, check this out: www.integratedlistening.com . It really does help build new brain connections, and you could take the training yourself (they allow "moms in the trenches" to do it, which was why I did) and do it in your home - with your other kids too if you wanted.