Friday, October 5, 2012
Bob and I enjoyed a much needed vacation in Costa Rica. A week away for "Couple Time"
Another Beautiful waterfall in the Rain Forest
White Faced Monkey getting a drink
Did you ever wonder where Cashews come from?
The beach at our Resort
Thousands of Gators!
Our dear friends we met from Hutchinson, KS enjoying a "Spa" treatment with us
Thursday, April 5, 2012
I can hardly believe that my little 1 lb babies are now 5 years old. Kinnick and Carver turned 5 on March 29th. We celebrated on Sunday, April 1st.
Since cake hasn't gone well the past 4 years, I thought I would get an Ice Cream cake this year. Kinnick and Carver have been eating Ice Cream and bananas as a snack for quite a while, now. So, I thought that they would surely eat their cake this year. Well, Kinnick was mad at something. She wouldn't even look at her cake and refused to sit by it. Carver tried a few bites, but it was so cold, he wasn't real interested. I suppose if I would have put it in the microwave for a few seconds and mashed some bananas in it, then maybe they would have eaten it. I still have a piece left, so maybe I'll give that a whirl.
Kinnick was excited to get her own Ipod touch. She LOVES music and drives everyone crazy begging to listen to Itunes on their Iphones.
New books are always a hit. We gave her a book about a dinosaur that cleans up his room. I'm hoping she takes a hint.
And of course, she got a new BLUE sweater. She wanted a blue sweater for school pictures, but we couldn't find one small enough for her.
Carver got some cool gifts. He got a soccer beeper ball. He's already learned how to turn it on.
Carver did a great job helping unwrap his gifts.
We got Carver an Incrediblock, so he can work on sitting. This will give him something to play with while he works on sitting. He seems to really enjoy it and the new bumblebee ball.
Carver is outgrowing his baby swing, so he got a new swing with a higher back to help support his head. I can't wait to hang it and take him out to swing.
And, one final picture of Kinnick giving her big brother, Hayden a hug. So precious!
Wednesday, April 4, 2012
Kinnick started Pre-School on Monday! Finally! She was so excited. She talked about it for 2 weeks.
Kinnick's O&M rode with Kinnick to school on Monday. She wanted to show Kinnick how to get to/from the bus with her mobility device. The goal is to help Kinnick be as independent as possible. She does amazingly well!
Getting a little nervous. Kinnick refused to have her picture taken.
Kinnick was so excited to get off the bus and tell everyone what a fabulous day she had at school. Kinnick has a Nurse that rides to/from school with her and another Nurse that stays with her in the classroom.
Once Kinnick gets off the bus, the Nurse gives Kinnick her mobility device and off she goes!
Kinnick is loving school and can't wait to go back the next day. She talks about all of her new friends and all of the fun things they do at school. She has a lot of "social skills" to learn. She doesn't see, so she tries to see with her hands. Not everybody likes to be touched. She has to learn to follow directions, and do things with the other kids. Sitting in circle time means sitting in a circle. Kinnick just sits in front of her new friends. It will just take time to learn how things are done. Vision plays such a big role in learning every day.
Wednesday, February 22, 2012
I had the opportunity to observe Carver in his classroom at school after spending 4 hrs in IEP meetings :o). The things I got to see were just amazing. We are very fortunate to have a team that truly cares about Carver, and who are doing everything possible to help Carver meet and exceed his goals.
Carver is "included" with the rest of the class as much as possible when it makes "sense". In the picture above, Carver is being included in circle time while also spending time in his stander. He is positioned as straight up as possible in his stander. This helps with weight bearing and head control. The class is enjoying music during circle time. Carver participates by rubbing 2 sticks together to make sound while other kids sing or listen to the music. This is an activity that Carver can participate in because it makes "sense". Let me explain what makes "sense". Carver is working on understanding what he hears. It is very difficult for him to hear in a noisy environment. If he can't hear, then he can't learn, right? So, during circle time, the music is playing, and he is participating in the noise by rubbing sticks together. There are other times when it just doesn't make "sense" for Carver to participate with the group. For example, story time. The classroom is very loud - children crying, screaming, talking, etc. Very typical of a special needs pre-school. In these cases, Carver is pulled aside to have story time. This way, he can hear what is being read to him, and participate.
Since Carver is working on understanding what he hears, anytime he is asked to participate in an activity, they present the activity or object in a partial box (see above picture). He is told what they are going to be doing, and in this case, he is asked to get his book. He was told that they were going to read a book. Carver grabs the book from the box when he is asked to get his book. You can see Carver grabbing his book in the above picture. No help is needed. This was amazing to watch. He showed off this ability numerous times during my visit with verbal cues only.
Carver has a very routine based schedule. His schedule is different M-F, but he does the same thing every Monday, and every Tuesday, etc. This helps with anticipation. It also helps him to connect to these tasks or things. A Deaf/Blind person has a very hard time connecting to things. Therefore, it can take multiple times of doing the same things before they connect. In the picture above, Carver is presented with a tub of water for water play. The water is always in the same tub. So, when he is told that they are going to have water play, and he sees the tub coming, he knows what to expect. He loves water play. He has to wear a hat/cap to keep water off his Cochlear Implant processors.
Carver gets to decide when he is finished with something. When he is finished with something, he pushes the item away from himself. All finished requests are accepted by the Therapist. This helps to teach Carver that he can make choices.
When Carver is finished with water play, he is asked to remove his hat. With a verbal cue only (no assistance), Carver removes his hat. Clearly he hears the request and understands the request. So exciting!! This again requires a quiet location, so Carver is able to hear exactly what the therapist is saying.
Carver's Therapists are working really hard on independent sitting. In the above picture, Carver is pushing himself up from the floor. While laying on the floor, the Therapist crosses Carver's legs (Indian style), then he uses his left arm/hand to push himself up ino a sitting position. The Therapist helps by holding his hips. The goal is for Carver to push himself into a sitting position with no help from the Therapist.
The above picture shows Carver after he pushed himself up into a sitting position.
Carver is also working on sitting without support for longer periods of time. In the above picture, the Therapists are having Carver push a ball back-n-forth between himself and the therapist. They tell him to push the ball to the Therapist, and he does. The Therapist tells him when she is pushing the ball back. The ball beeps, so he hears the ball coming. They do this for more than one reason. The first reason is to work on independent sitting. The second reason is to work on motor skills and listening skills. The third reason is to work on anticipation. Always working on something and they have a great way of making it fun.
These are just a few things that I observed over an hour. He spends 2 1/2 hours at school per day.
Guess who is nearly potty trained?!?! Kinnick hasn't had an accident all week - including at bedtime. She is wearing panties all day. We have been putting a pull-up on at night, but she is waking up dry. I told her that if she could wake up dry 14 days in a row, then she can wear panties to bed. So far, so good!
This is the pocket the school created for Carver's Valentines. They always cater to Carver's differences. Every piece on the pocket has a different texture, so he can feel (see) his Valentine pocket. They completed it with his name in Braille (on the pink heart). We have the best teachers, therapists, and 1:1. I almost feel guilty.
Wednesday, January 18, 2012
We've been working on self feeding forever. Here is a video of Kinnick taking some bites on her own. She's not eating a whole meal or anything, but this is definitely a start!
Here are a couple of pictures where Kinnick is licking a lollipop!
Saturday, January 14, 2012
This is just amazing. In a few short months of work, Carver's new PT has taught him to army crawl! I'm sure she had help from the other therapists and of course Carver's fabulous 1:1. I'm so thrilled with this achievement. We've wanted Carver to crawl for a very long time. Now, he's army crawling. I'm sure this is just the beginning.
Carver, we are so proud of you!!
Friday, January 13, 2012
So perfectly written by Candace Barnes - A Cerebral Palsy Mom
Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next. We become educated in the legal, medical, and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it, eat it, sleep it, we also dream it. Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled, humiliated, felt guilty, made ashamed, brought to the point of begging at times, made angry, made determined, driven to the point of desperation, all for the sake of our children. We have sat in hospitals for days, weeks, months praying that our child makes it one more day, praying that our child lives long enough to know how much we love them, stood the onslaught of surgeries that could be life threatening, procedures that could make the situation worse, been through treatments that would make a grown man cringe, all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things. We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made, every piece of equipment, every new medication, every strange idea on the hope that it might work. We have dealt with quacks, conmen, inexperienced people, uncaring individuals, rudeness, and cruelty toward our children. We have lost everything, sold everything, traded everything in the pursuit of help for our children. We have given up friendships, family, relationships, and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed. We have learned to be realistic people. We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts, angst, miseries, hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors, more surgeries, more treatments and procedures with a smile on their face. We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have, we see their abilities as well as their limitations when they go through the procedures, treatments, surgeries, and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage, determination and – most of – the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives. So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies, more complicated messes, and deal with more situations than you can imagine. We have been bent, sometimes broken, medicated, treated, depressed, angry, sad, and most of all a little fearful of the future. We have slayed more dragons, conquered more worlds, invented more items, discovered more truths, and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors, therapists, surgeons, nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses, other children, housework, jobs, friends, family, society, and our own health because we have been busy in the pursuit of a better life for our children. So do not think that we are incompetent – instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves. So listen to us when we speak because we know what we are talking about. Don’t talk down to us, respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive, we earned it the hardest way possible, and we carry that badge of honor with us in every single thing we do, every word we speak, and every action we take.