Sunday, November 2, 2008

"Krista Bean"

What to say about Miss Bean... Let me start by saying that Krista's disabilities are fairly similar to Tia's, the difference is that Krista is able to walk and talk. Her "developmental age" is apprx. 24 mo. old. Her neuro. testing, so far, has indicated that it is doubtful that Krista will ever live on her own, We are hoping that she will reach a developmental age/maturity of 13-15 years old. Krista will always live in a group home or structured setting. As things look now, we won't be able to keep Krista in our home because children with this type of deficit don't function well in a "family setting" (because of the constant emotions and changes). However, they thrive in structured settings that are more "institutional". People comment (almost daily)... "really? but she is so cute!" or "are you sure? I haven't ever seen anything "wrong" with her." Please trust us when we say that we did NOT make this up. We have spent hours praying, crying, begging and bargaining, nothing will change the fact that she is disabled, and we have to do what is best for Krista. It won't necessarily be what we (or others) think should happen. Krista doesn't have the capability to bond and form attachments. Not because she chooses not too, because she can't. It may be more helpful to hear "I'm sorry, that must be hard for your family, how are you holding up?" We are a little unclear why people think that we are "making this up" and why they are so comfortable expressing their opposing opinion directly to us. We do have 5 other (fairly high maintenence) kids that have not gone into full-time care, this is not something that we make a habit of. (yet,..ha ha).
Here is the "short list" of Krista's issues that we face daily... Severe eating "issues", she eats blankets, clothes, stuffed animals, drywall, paint, carpet and anything that she finds while compulsively scouring the floor, garbage cans or the ground outside.
She will eat until she vomits, chews and swallows the vomit then asks for more food. If we have food that she especially liked, she will make herself vomit so that she can "enjoy it again". She will drink from the sink until her abdomen is so bloated and distended that she can hardly walk, then beg, scream and cry that she wants a drink. She does not ever feel full or satisfied.
She picks at and eats her skin, chews on her arms and fingers until they are raw and bloody.
She will put her fingers in her bum until she gets enough poop out to "play with", eat, smear on walls, furniture and toys.
The friendliness, (so often pointed out to us), is exactly the same for every person Krista meets. She will climb into a strangers lap, hug and kiss them, will wander off or go with anyone. Has no comprehension that she "belongs" somewhere or with someone. Caregivers are interchangeable, Krista doesn't "bond" in the traditional sense. If we took her to a strangers house and told her she lived there, she would go and never look back.
We have dealt with her trying to push Hailey down the stairs (numerous times), encouraging Hailey to put her fingers into an exposed electrical socket and grabbing my ankle to try to trip me down the stairs. I have caught her beating Tia over the head with a toy while "singing" Tia's name. Krista cannot be left alone EVER, she has accused us of hurting or touching her bottom, punching her, slapping her, biting her, as well as reporting to Cody that "mommy hurt Tia" when he was looking at a heat rash on her back. We have to document, with written log and photos, every injury and accusation. If she gets a small injury, she will rub or scratch it until it leaves a big mark, then tell people that "mommy, daddy, teacher did it". (I have been accused of injuries that happened when I wasn't even there). Luckily, we have a whole team of psychiatric professionals that are aware of this and "on call" if Child Protective Services ever shows up.
The reason behind her behavior, which I know makes her sound a little like a sociopath:), is that Krista's brain does not recognize limits or boundaries. If a thought pops into her head she will immediately speak, yell or act,
Life with Krista is a bit "tricky", she does not recognize, remember or acknowledge consequences. She constantly seeks sensory stimulation, she cries/screams/tantrums/rages from the time she gets up until she goes to bed. The reason the behavior is not as obvious when others are around is the fact that her brain is so quickly and easily distracted that new people or surroundings keep her mind occupied by having to process new "input". When she is at home and things are familiar, she has to keep her brain "stimulated" by screaming/jumping/running/chewing, hurting herself or others, etc...
If this behavior were "purposeful" then we could use behavior modification to deal with it accordingly, but it is totally subconscious and "normal" to her. No thought goes into it at all, she does not assess a situation to see how she can manipulate it, her entire thought process is very short and impulsive. She does not remember things or "transfer learning" (if she learns something at home, she has to re-learn it at school). Everything that we know about being parents is wrong when dealing with Krista. Her behavior gets worse the more attention that she receives, positive or negative, we can't give her lots of hugs and kisses or play with her the same way that we do the other kids. The more "therapeutic" the interaction, the longer we can keep her at home. Our goal from this point is to keep her here at home as long as we possibly can. I hope that this helps clarify things... I wish it cleared things up for us :)
The positive side is... Krista is, in fact, friendly, cute, sweet, funny and her memory issues mean that everyday is a "fresh start" :)
These deficits are the direct result of choices made by Krista's birth mother, it is heart breaking to watch this child struggle daily because of someone else's choices... I guess, that's probably how Heavenly Father feels about all of us.

5 comments:

Anonymous said...

Bless you! I had no idea this was going on. Because of a friend who works with special needs, we are very aware of such "children" (they never really grow up.)
What a blessing the atonement is, she is the innocent victim of her mother's choices. I applaud you for doing what is best for her and your family no matter how agonizing it is. I love you!
If I ever get strong enough, you're at the top of the list for a good long visit! Thank you for being my friend!

marciemo said...

Wow, Julie. That must be really difficult for you and your family. I feel a special love for Krista (Tia as well) from when I was in nursery with her. I know you'll make the right decisions for Krista and the rest of your family. Hang in there!

Danielle Thompson said...

It takes a special person to deal with the things you do. . .and stay sane! You do a wonderful job with your kids and I really feel for you and issues you are facing. I really don't think I could do what you do--you are amazing! We'll keep Krista and you in our prayers. Love ya!

Becca said...

Oh Julie, I didn't realize it was this hard...you hide it well;) You guys are incredible people and you do soooo much! You are doing a great job, and I know you'll be strengthed as you guys face these challenging times. Just make whatever decision you feel is best for Krista and your family and everything will be ok! You guys will be in our prayers! Take a deep breath, you can do this!!!

Paul n Lea Larsen said...

Hi Julie. This is remarkable. You have done so well with your children. Is there a "name" for this condition? I hope you will give us updates from time to time. It would be interesting to see if she changes at all with age. It sound like from what you say there won't be any growth at all. Is that what you are seeing still? Love ya, Dad