Monday, November 24, 2008

Zachary the Vampire

Zach performed in his class opera on Thursday (Nov. 20th). It was written by the class and so funny! The ghosts, werewolves, bats, witches and vampires are trying to combine their efforts to have a scary party. The highlight of the evening (for me anyway) was when Zach noticed that the little girl next to him was "hiding" (because Zach is so tall). He very tenderly placed his hand on her back and encouraged her in front of him so that her Mommy could see her too. He did it again at the end of the play when a little boy that is disabled was stuck behind the line of kids and is not bold enough to push his way through. Zachy looked around, noticed this little guy and very sweetly helped him up to the front. It was so cute, I love this boy!! He does these things without even thinking about it, it is just his innate personality. Zach has the sweetest, most tender heart!

Thursday, November 20, 2008

Miss T

Tia is teasing Andrew when he is trying to kiss her cheek... so cute! Mother's Day 2008 What a sweet face!!!
Tia was eating carrots. When she eats anything it's a big deal, we get the camera. "Eskimo Kisses"
~Tia says Hi!~
I get a lot of inquiries from people about our little "Miss T". Tia was born at 24 weeks weighing 1 lb. 4 oz. She was in the NICU for 8 months to stabilize her before they could send her home. She did go home with her birth parents but was removed from them by the police and child protective services when they stopped taking her to her medical appointments and wouldn't let DCFS in to check on her. When the did get into the home (forcibly) they found that her birth parents were not giving her medication or feeding her properly. She was removed from the home and placed in the hospital for dehydration and failure to thrive. Tia was placed in a specialized medical foster home where she lived until we adopted her 2 years ago. At the time of her removal, her birth mom was already pregnant with Krista (Krista was born at 31 weeks, declared in "imminent danger" and placed in the same foster home as Tia when she was discharged from the hospital at 2 months old). Due to her extreme prematurity, both of Tia's retina's detached so she is completely blind. She also had a severe brain hemorrhage and has been diagnosed as "profoundly mentally retarded (meaning her IQ is less than 40, the jury is still out on that as far as we are concerned). Tia does not eat orally at all, we feed her with a tube that is inserted into her stomach, she "eats" Pediasure. Tia also has Cerebral Palsy so right now, does not walk independently. She will walk if we hold her hands but she makes us do all of the work :). The CP also affects the muscles in her face/mouth which is what makes eating rough. She doesn't have a whole lot of control over her mouth so the slobber flows freely :) The greatest thing about Tia is.... everything!!! She is the sweetest spirit ever born, she has a giggle that is so contagious that we have neighbor kids come over just to try to make Tia laugh so they can hear it. She knows each one of our voices, and can tell who is coming just by the way we walk into the room. "T" loves to listen to music and can be found frequently wearing her winter hat that holds the head phones for her MP3 player in place. We feel so honored to have been chosen to be the family for this angel girl, words cannot begin to express how much we adore her.

Tia the Turkey

Hailey and I went to Tia's Thanksgiving program at school yesterday. I dressed Tia in the famous turkey dress that my sister in law passed down to us. It was perfect because Tia played the part of the turkey! Her teacher read a story and whenever she said the word "turkey" Tia's aide held a communication switch for Tia to push that said "Gobble, Gobble, Gobble". It was so cute! Tia laughed every time she got to gobble. After the program we had a "dinner"; turkey, stuffing and everything. You gotta love a school program that includes a full thanksgiving feast at 11:30 on a Wed. :0)
We spent a couple of hours hanging out in Tia's classroom afterward. There are some very disabled kids in her class that are medically fragile. Hailey was so cute, she stood next to one little girl and talked to her and rubbed her leg, it was so sweet! You would think that a 2 year old would either be scared of the medical equipment or pull on the ventilator tube or something. Hailey spent quite a while with this little girl and got great pleasure in the fact that she would smile when Hailey talked to her, absolutely priceless. I was so engrossed in watching the interaction that I didn't think to take a picture. I did get pictures of Tia the Turkey! It was a very fun day.

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.

Halloween

OK - Truth be known... I hate Halloween! I will never understand a "holiday" in which the goal in everyone's life is to scare the snot out of people. That being said :) my kids love it (of course) and they look very cute all dressed up. (Cody Joe is the skeleton, he is with his friend Kyle)