Thursday, June 7, 2012

A big heap of trauma piled on top of a brain injury

Warning...this is a long, rambling post - mainly for me. Pumpkin's situation is driving me nuts. I'm going to word vomit for my own therapy here. Maybe when I get to the end of the post I will have made a point. Maybe not. But I'm trying to deal with the craziness that is foster parenting doubled up with the bizarreness that is Pumpkin.

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Pumpkin is the strangest special needs child ever.

I had never parented a special needs child before Pumpkin. I'm not an authority. But I've sure tried to become a lot more educated since Pumpkin entered my life almost a year and a half ago.

It also helps that my brother is a doctor and my mother has a degree in special education. I've come to the two of them with more questions than I can count! They have been valuable resources. I don't think I could have made it this far without their help.

So, I'll say it again... Pumpkin is the strangest special needs child ever.

She can put together 24 piece puzzles without any effort at all. In fact, I'm convinced she could do puzzles bigger than that but she has a difficult time with the little cardboard pieces. (I've stuck to all wooden puzzles so they don't get ruined.) Pumpkin can even dump out several puzzles and sort out the pieces and get things all back where they belong.

But it took me several weeks to teach her what "roll over" means when I'm giving her a bath so I can get her bottom clean.

Pumpkin knows every letter of the alphabet. She can pick them out even when they aren't in order.

But she can't answer what she wants for breakfast unless I'm holding her choices out in front of her to touch.

Pumpkin can sing entire songs.

But she can't tell me if her foot hurts or if she's feeling sick.

There are so many things Pumpkin can do. And oh so many things that she can't.

The only diagnosis that Pumpkin has (that really matters) is traumatic brain injury at birth. She had meningitis.

She's got other diagnosis that may or may not be related to the meningitis (long, weird medical ones that I'm not going to look up right now because I can barely say them - let alone spell them). She's also got epilepsy. She may or may not have fetal alcohol syndrome. And she has many, many, many autistic tendencies.

But she doesn't fit any of the molds!

Many autistic children will self stimulate by doing repetitive motions or making repetitive sounds. Pumpkin does this. She hums quite loudly. She shakes her hands in front of her face.

However, she'll stop if I tell her to. --- Not always for a long time. --- But for the past few days, when the humming gets super loud and I tell her to, "knock it off," the humming will subside for quite a long time.

It's my understanding that most autistic kids are not able to control their stimming behaviors.

I'm not going to go on forever with tons of examples. To put it simply, if you can think of something that is normal for a special needs child – Pumpkin will break that mold. She's severely mentally retarded. And I do mean severely. Yet she has a list of splinter skills that is quite long. It's maddening really. I have to remind myself over and over that the thing "I saw her do" was a splinter skill. It doesn't mean that she can do something else similar in nature. (Shoot - it doesn't even mean she's going to do it again ever.)

Pumpkin's language deficit is the most difficult thing for me to handle. By and large (like I've said dozens of times) Pumpkin is not capable of meaningful speech. Most all of her language is echolalia. She repeats things she hears other people say. Sometimes she'll get it right...like when she says, "good morning" first thing in the morning. But other times she's way off...like when she says, "good morning," at 7:28PM.

Pumpkin can repeat entire scenes from Sponge Bob episodes. She actually seems to understand some Disney shows and Dora the Explorer. TV is something Pumpkin loves. (I think TV was her entire life before coming in to Care.) Her repertoire used to be quite extensive. They loved her at school. In the self-contained special needs classroom, she was a star! She had few negative behaviors and she'd repeat everything the teacher said. They thought she was terrific. 

But now, Pumpkin's echolalia is even disappearing. She's barely talking at all. Phrases she's repeated since I met her have become this strange mumble in the cadence of the phrase – but not actual words anymore.

When I say, "lay down"...Pumpkin will moan/mumble/hum (whatever you want to call it) a series of sounds that you can tell are "lay down" but they aren't actually words. If I ask a question the tone in her mumble will go up at the end. She's copying me. But she's refusing to say words.

The only words left in her vocabulary (at least when she's around me anyway) are the words that get her what she wants. And since Pumpkin wants very, very little that she's willing (or able) to communicate, she's not saying much.

She knows I won't let her get down from the table when she's done eating until she says, "all done". It took MONTHS to teach her this with more repetition than you can imagine. I used hand over hand sign language. I praised her like crazy and danced with her all over the kitchen when she used her words. I made a big, big deal out of it when she got it right. And when she refused to do the signs, or when she refused to say the words – she sat at the table. There were times when she sat at the table for nearly an hour because she wouldn't say anything. I'd give her the verbal prompt. I'd tell her to repeat after me. And she'd turn her head away. So she sat there.

So, for right now, Pumpkin will still say, "all done," when she's finished eating. It takes a verbal or physical prompt. But she'll do it.

However, all other communication seems to have disappeared completely.

Is this because of her brain injury? She's been out of speech therapy for almost a month now. Was therapy really helping that much before? (I personally can't say that I saw a tremendous difference between when she came in to care never having been in speech therapy – and what she was like many months later.)

Or is this trauma? Pumpkin has been seeing a lot of her mom lately. She's had two weekend visits. And now that I've worked things out so her mom can be in the waiting room during therapy, Pumpkin has at least seen her mom three additional days this week. (Pumpkin desperately needs PT, OT & ST!!! I was glad to finally have a system in place so that she could go again and I wouldn't have to give up so many hours of my life sitting in a waiting room with four other small children multiple times a week.)

I called My Genius Mother earlier this week and told her to tell me to put on my big girl panties if that's what I need to hear. But the mumbling back at me instead of using words was even more annoying that the echolalia!! It was like fingernails on a chalkboard!!!!!

My mom validated me. She agreed that it would drive her nuts too. She recommended that I put my hand on Pumpkin's mouth when she was mumbling back at me and tell her no. Then tell Pumpkin to "use her words".

Yippee!! My mom told me to do exactly what I was already doing.

So, I did need to put on my big girl panties and just keep it up.

After day three of seeing her mom in a row, Pumpkin has upped the ante even higher. She won't make eye contact with me at all. Granted, eye contact is not something Pumpkin can do on her best of days very well. It was a skill she was working on is speech therapy. But today – she took it further than just turning her head away from me. If I look at Pumpkin and try to talk to her, Pumpkin will close her eyes. She is rejecting me with every ounce of her being.

But, in true Pumpkin fashion where nothing makes sense...she'll let me pick her up and hold her. She'll let me sing to her and rock her... but if I try to look at her face, she'll close her eyes and turn her head.

No words. Only mumbles. No eye contact whatsoever! Ginormous rejection.

This poor little girl is so very, very sad. She wants her mommy. She'll say, "mommy" and move with great anticipation if I tell her that's who we're going to see. But by and large, she's horribly depressed and doesn't understand anything that's happening to her. She hates me with every fiber of her being. She wants nothing to do with me or anything I have to give to her. And I can't explain any of it to her because she's not capable of comprehending.

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This is where I throw a pity party for myself. Again I say - it's not like she's crying all the time or throwing fits. I'm sure most people think I'm a putz for getting frustrated about the mumbling. But she drives me nuts. I have to do almost every single thing for her and yet she rejects me with everything she can. I have to change her diaper. I have to brush her teeth. I have to pick out all her food. I have to choose her clothes. I have to get her dressed. I have to... I have to... I have to...

Man - that's some pity party I'm throwing.

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I know it's the trauma now more than anything. But it doesn't make it easier for me. I wish it did. None of the parenting books address this issue. Not even Christine's awesome therapeutic parenting video deals with this.

Because nothing can change it. The amount of time it will take for Pumpkin to show any amount of healing is probably more time than I've got. And who knows if she's capable of healing. This is so much more than RAD, or ODD, or PTSD. She could have all of those too on top of the traumatic brain injury. Who knows?! And because The System keeps throwing her back to her mom, Pumpkin remains confused.

And being playful doesn't help. Being a good listener doesn't help. Validating her feelings doesn't help. Because Pumpkin doesn't understand.

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I guess I have to wrap it up with the fact that I do indeed just need to put on my big girl panties. I'm not going to give my 30 day notice yet. Pumpkin is in the process of getting a brand new CPS worker. (And by brand new I do mean brand spanking new. The child just finished her CPS training. She's brand, brand, brand new.) I can't leave Pumpkin in the hands of someone that knows nothing yet. I'd also like to make sure that Pumpkin gets her new leg braces. We're scheduled to see the specialist for an evaluation on June 18. They're talking about some new funky kind of a leg brace that will help keep her from turning her leg in as she walks. I want see her through the process.

And people are starting to listen to me just a bit. The GAL used my exact words to the judge at our last court hearing. And I think it's because I got the lawyers involved with the pinching/scratching over the weekend that there was a special hearing in court today.

I just don't feel like I can abandon Pumpkin now. Even though she hates me. Even though she drives me nuts.

So I'm going to find me some super industrial big girl panties and see what happens tomorrow. TGIF!!

2 comments:

MamaFoster said...

i blame the weekend visits. instead of the usual fits or acting out kids show, Pumpkin is doing her own brain injury version of that.

i wish that:

1. if you child goes home to you and is put back in care in less that a year you automatically lost your rights as a parent

2. they would speed this up and put her in a permanent home

Foster Mom - R said...

Pour yourself a big girl glass of "juice" too! Hugs!

Just a thought but maybe she's rejecting you before you can reject her. Maybe she is testing you like many RAD kids do.