So the people from Make a Wish are coming out tomorrow to talk about Evan's wish. I have thought a lot about what I should ask for. I want it to be something Evan will truly enjoy but also something that the whole family might benefit from as well. So I am going to ask to go to DisneyWorld. The main reason that we want to go here is because I think we would be staying at the Give Kids the World Village. I looked this place up online and they have horseback riding two days a week, a train, an ice cream shop, and an accessible playground. I mean Evan loves horses and trains so he would be in heaven just in this place. Plus how cool is it too have an accessible playground. They 196 suites for families to stay in. I know that Evan would also enjoy Disney as well, he recognizes the disney characters on TV and sometimes at the store. He does like to ride amusement park rides as well. Not roller coasters but the kiddy type rides and he even rode the haunted house ride at the fair with Gabriel and Cynthia last year. So I know we can get the disability pass for Evan and I might even get it for myself because of my bad hip. I know I will be in so much pain from just all of the walking we will be doing, standing in line will be pretty hard on me as well. I know when we were at Disneyland and my sister was prego they said we could only use it for rides that she was able to go on. So that means that we can get in on the kiddie rides but not any of the roller coasters so I could use my pass for the roller coasters and that way we would not have to be dishonest at all. I would not be anyway.
I think it would be so awesome for us to be able to get away from it all and not have too worry about money or saying no to the kids if they want to buy something. I think Gabriel and Evan are at perfect ages to enjoy Disney and Cynthia will enjoy it as well. I also have family in Florida so maybe we will be able to meet up with them at some point. That would be cool. I am already thinking of the scrapbooking possibilities.
We are the Justinich Family- Rudy, Stacy, Cynthia, Gabriel and Evan. We talk about everyday life including the joys and heartaches of raising a child with special needs. We hope you enjoy our blog and learn something as well.
Saturday, June 20, 2009
Sprit
Evan's favorite movie is Spirit Stallion of the Cimarron. I had bought this for Gabriel I think before Evan was born and then it was in a box after we moved. Our neighbor really liked this movie so I pulled it out for him to watch. Evan was maybe 2 1/2-3 years old. I just remember him loving this movie, he would watch it pretty much from start to finish over and over if I let him.
I love the story behind this movie. Spirit is a horse in the old west and he is telling his story through a horses eyes. Basically, this horse keeps getting captured or having to run for his life from the army colonel who is trying to break him. He meets up with an indian boy and his horse Rain, spends time in their village and then is going to take Rain to his homeland when the village is attacked by the army. Rain is injured and Spirit is captured again and taken on a train to where the railroad is being built.
Spirit realizes that the railroad is heading to his homeland so he goes to great lengths to stop the railroad progress, he is running away and gets caught in a fire and the indian boy saves him. They run from the army once again and jump over a huge canyon, finally the colonel admits defeat and lets them go. Spirit is finally free and so is his indian boy. So they reunite with Rain and the horses say their goodbyes to Little Tree. Little Tree says "goodbye Spirit who could not be broken"
This reminds me of Evan. He has such an unbreakable spirit. He has been poked and prodded so many times and yet he is not scared of the DR. or anything. He has been in multiple therapies since he was 10 months old and he is still having therapies to this day. He is just such an awesome kid. In the movie the horses do not talk to each other but they communicate in their own way. You can tell so much in their facial expression and their eyes. This is how Evan communicates. He uses gestures, signing and pointing. But his eyes and face tell so much as well.
I love the story behind this movie. Spirit is a horse in the old west and he is telling his story through a horses eyes. Basically, this horse keeps getting captured or having to run for his life from the army colonel who is trying to break him. He meets up with an indian boy and his horse Rain, spends time in their village and then is going to take Rain to his homeland when the village is attacked by the army. Rain is injured and Spirit is captured again and taken on a train to where the railroad is being built.
Spirit realizes that the railroad is heading to his homeland so he goes to great lengths to stop the railroad progress, he is running away and gets caught in a fire and the indian boy saves him. They run from the army once again and jump over a huge canyon, finally the colonel admits defeat and lets them go. Spirit is finally free and so is his indian boy. So they reunite with Rain and the horses say their goodbyes to Little Tree. Little Tree says "goodbye Spirit who could not be broken"
This reminds me of Evan. He has such an unbreakable spirit. He has been poked and prodded so many times and yet he is not scared of the DR. or anything. He has been in multiple therapies since he was 10 months old and he is still having therapies to this day. He is just such an awesome kid. In the movie the horses do not talk to each other but they communicate in their own way. You can tell so much in their facial expression and their eyes. This is how Evan communicates. He uses gestures, signing and pointing. But his eyes and face tell so much as well.
It is amazing to see a special needs child who cannot communicate with words, because they cannot talk or see or hear, it is sometimes assumed that they are not smart or aware of their surroundings. Being a mom of a non-verbal special needs child I feel that I have the advantage to see that these kids also have great spirits and do know what is going on, you just have to stop and pay attention to their signals.
Thursday, June 4, 2009
Preschool has come to an end
Evan's First Day of Preschool at Elitha Donner October 29, 2007
Look at him sitting in the 5pt harness on the bus, he fit in that all last year and for a little bit this year and now he does not even fit and has to have the velcro vest instead.
Here is Evan on the first day of preschool 9-4-08 and the last day of preschool 6-4-08, I think he has grown a ton
In 10 weeks I will be sending my baby off to Kindergarten.
New Backpack-Full of Surpises
Wednesday, June 3, 2009
Preschool Graduation
Today was Evan's Preaschool Graduation, he was such a stinker. He was supposed to be sitting in circle with the other kids but he had to sit with either me, daddy or Grandma Barbara. 
Here is Evan getting an Oustanding Attendance Award, not perfect attendance but I guess he was there more than some of the other kids.
We were trying to get him to hold hit certificate up to show so we could take a pic but he was too excited.
Here he is admiring his certificate.
Despite Evan not wanting to sit with his friends or participate in the songs, he did go up by himself and collect his graduation certificate. He is shaking hands with the principal here.
His special ed teacher Ms. Jan is helping him on the stage.
Standing on the stage and showing his diploma off.
Now he gets to take turns shaking hands with other staff members
We are so proud of all the gains that Evan has made this year and all that he has learned. This was a great place for him to be. I think he will enjoy Kindergarten just as much. I hope the staff and support is as great as it was at this Headstart preschool.
We were trying to get him to hold hit certificate up to show so we could take a pic but he was too excited.
Here he is admiring his certificate.
Standing on the stage and showing his diploma off.
He was so proud of himself
Now he gets to take turns shaking hands with other staff members
We are so proud of all the gains that Evan has made this year and all that he has learned. This was a great place for him to be. I think he will enjoy Kindergarten just as much. I hope the staff and support is as great as it was at this Headstart preschool.
Kittens
Finally, here are some pics of our new little kittens. There are 5 of them. They are so cute.
Here is the Mamma(mittens) being a good mom and nursing her kittens. They are so funny because they will just get in there and move each other out of the way and even fight a little to get to their preferred nursing spot. The kittens are now 1 week old. I will try to update pics every friday, to document how they grow.
Here is the Mamma(mittens) being a good mom and nursing her kittens. They are so funny because they will just get in there and move each other out of the way and even fight a little to get to their preferred nursing spot. The kittens are now 1 week old. I will try to update pics every friday, to document how they grow.
Monday, June 1, 2009
Accentuate the Positive
Friday was Evan's IEP and so of course I got the reports from all of his therapists and teacher. Getting reports is not always the greatest thing because it is usually just a reminder of all the stuff your child is not able to do, or how far behind they are compared to their peers. These reports would always serve to put me in a down mood, and wallow in how much I hate Evan's disability. For some reason these reports were written differently and I did not feel bad about reading them. So here are all the good things that are in Evan's reports.
Speech:
Evan has a placemant with three single phrase switches with pictures on them. Following natural cues(Let me know if you need help) Evan can independently select the appropriate messages ( I can do it myself or I need help please)
Pre-Academic/Cognitive
Evan identifies his first name in print from a field of five. He can match and sort by color and shape. He identifies the colors red, blue, yellow, green, pink, purple, orange, brown and black.
Self- Help
Evan is having moderate succes with a scheduled toileting program. He even remains dry fro the 1 1/2 hours between toileting.
Social Integration
Evan enjoys school. He enters the classroom with a wave and greeting for the adults and his peers. He will share toys and materials and wait his turn in structured and unstructured activities.
School Behavior
Evan wants to participate in all classroom activities with his typically developing peers. He watches them closely and tries to imitate what they do. He is not easily discouraged and has demonstrated good problem solving skills for making his own accomadations for his motor limitations.
Physical Therapy
Evan has made progress in all his treatment goals. He can now ambulate 10-20 steps sideways and backwards. He can ambulate the length of the balance beam or raised curb at times with only his shirt held.
OT
Evan can hold a cup in the crook of his left arm and pour into the cup with his right hand.
Feeding
He has stabilized in his feeding goals and has actually been discharged from feeding, which is a good thing in some ways and not in others. Evan still does not chew well and still has to have all of his food chopped really small and all of his liquids thickened. He has basically hit a plateau with feeding. But he is able to eat safely as long as things are cut up for him.
Psychology Report
Evan scored in the low average for his non verbal skills, which is good. He score lower for verbal skills for obvious reasons.
Evan is still significantly delayed in his fine motor, gross motor, speech, communication, cognitive and feeding skills. But he is making progress. He is such an awesome kid and such a miracle because his brain says he should not be doing anything that he is doing.
The one thing that is a constant in all of Evan's reports is the fact that he has behaviour problems. He is uncooperative for his therapists and teachers. While they have all noted improvement, it is still enough of an issue for it to be mentioned in each report. We are all at a loss of what to do with him during his behaviors where he flops on the floor or chooses to go another direction etc. I usually just ignore him. Or when we are out in the community he is in his wheelchair so then it is not as much of a problem. At school they have the advantage of his peers so they can tell him that he should not act a certain way because none of his friends are acting that way. This sometimes works. He has had to have time out a few times though. This is just something that worries me about the future. I just don't want Evan to have severe behavior issues. But for right now I am just going to be happy for all that he is doing and the gains that he has made. I am still nervous for kindergarten but I feel like he has a good team workign for him.
Speech:
Evan has a placemant with three single phrase switches with pictures on them. Following natural cues(Let me know if you need help) Evan can independently select the appropriate messages ( I can do it myself or I need help please)
Pre-Academic/Cognitive
Evan identifies his first name in print from a field of five. He can match and sort by color and shape. He identifies the colors red, blue, yellow, green, pink, purple, orange, brown and black.
Self- Help
Evan is having moderate succes with a scheduled toileting program. He even remains dry fro the 1 1/2 hours between toileting.
Social Integration
Evan enjoys school. He enters the classroom with a wave and greeting for the adults and his peers. He will share toys and materials and wait his turn in structured and unstructured activities.
School Behavior
Evan wants to participate in all classroom activities with his typically developing peers. He watches them closely and tries to imitate what they do. He is not easily discouraged and has demonstrated good problem solving skills for making his own accomadations for his motor limitations.
Physical Therapy
Evan has made progress in all his treatment goals. He can now ambulate 10-20 steps sideways and backwards. He can ambulate the length of the balance beam or raised curb at times with only his shirt held.
OT
Evan can hold a cup in the crook of his left arm and pour into the cup with his right hand.
Feeding
He has stabilized in his feeding goals and has actually been discharged from feeding, which is a good thing in some ways and not in others. Evan still does not chew well and still has to have all of his food chopped really small and all of his liquids thickened. He has basically hit a plateau with feeding. But he is able to eat safely as long as things are cut up for him.
Psychology Report
Evan scored in the low average for his non verbal skills, which is good. He score lower for verbal skills for obvious reasons.
Evan is still significantly delayed in his fine motor, gross motor, speech, communication, cognitive and feeding skills. But he is making progress. He is such an awesome kid and such a miracle because his brain says he should not be doing anything that he is doing.
The one thing that is a constant in all of Evan's reports is the fact that he has behaviour problems. He is uncooperative for his therapists and teachers. While they have all noted improvement, it is still enough of an issue for it to be mentioned in each report. We are all at a loss of what to do with him during his behaviors where he flops on the floor or chooses to go another direction etc. I usually just ignore him. Or when we are out in the community he is in his wheelchair so then it is not as much of a problem. At school they have the advantage of his peers so they can tell him that he should not act a certain way because none of his friends are acting that way. This sometimes works. He has had to have time out a few times though. This is just something that worries me about the future. I just don't want Evan to have severe behavior issues. But for right now I am just going to be happy for all that he is doing and the gains that he has made. I am still nervous for kindergarten but I feel like he has a good team workign for him.
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