Cerebral Palsy is THE MOST common disabilities in children.
1 in 500 will be diagnosed.
Of those diagnosed:
70-80% have spastic muscles. Which means they are stiff and tight.
1 in 3 are unable to walk
1 in 4 are unable to talk
3 out of 4 are in pain all the time
1 in 4 have epilepsy
1 in 4 have a behavior disorder
1 in 2 have some developmental disorder
1 in 10 have a severe visual impairment
1 in 4 have bladder control problems
1 in 5 have a sleep disorder
Tyler has Cerebral Palsy. It effects his walking and talking. He has epilepsy. He has anxiety and other behavior disorders that we are working on this year. He is developmentally delayed and has severe visual impairment. He has no control over his bowels or bladder and has a sleep disorder not limited to periodic limb movement disorder and the inability to turn off his brain enough that he seizes more 45 percent of the night.
There is not one “normal” aspect of his life.
There is no cure.
Showing posts with label behaviors. Show all posts
Showing posts with label behaviors. Show all posts
Thursday, October 3, 2013
Tuesday, April 9, 2013
The Fun Part
While we were in Utah it wasn’t all meant to be doom and gloom and sadness and surgeries. Our whole plan was to do the surgery and happily play the REST of the week with every person that we could pack into our lives that loves us and we love them.
Wednesday was the day that I was planning on going to UVU and U of U to get my transcripts and get them sent to ASU. You see, I am going back to school. I have about a year before my bachelors is complete and I am aiming towards the Physician Assistant schools here in Arizona. I have passed all the classes needs, my GPA doesn’t suck and I need to do 2 classes and take the GRE as I apply around. So that is our “goal.” Well, that didn’t work out to get to the schools. Do to some poor management of time I ended up doing nothing that day until my mom and dad got up to the city.
Us at Grandpa Browns. Ipads were the BEST invention in my entire lifetime. THANK YOU STEVE JOBS!
We pulled into my sisters house and I just started crying. I had had a very emotional 2 days and between Tyler’s surgery and the accident back in Arizona I was a mess. Just low, low. My dad had been invited to a basketball game with my brother and his two cute M and M’s. We were hoping that his wife would come down with the other 2 boys, but they didn’t. So, we all packed up into 2 cars and went to Chuck A Rama Buffett. ( and eatting at a buffet ensured I could eat my feelings:) )That way I didn’t have to worry about finding food for my kids, neither did anyone and my kids are insanely picky and loud and crazy. So why not let them go someplace that had room enough and people enough to make sure no one died!
We had the BEST time. I LOVE my sisters. Holy crap are they insane people. We are like every other family and we have sister fights and we are mean and terrible sometimes. But at the end of the day, we have all three come to realize that we are sisters. We only have each other. And my mom was there.. laughing harder than she has in a long time. My kids LOVE her!
On top of my awesome sisters, Tyler was the lively hood of the party. He has a wonderful song about Becky. He will sing it if you ask him. Her name is Becky from Sir Mix A Lots “I like big butts song” and that song is his favorite to start singing in public. He has so many things he says that just makes everyone giggle.
Every time someone would ask him to stop, he would say “ Hammer time” or “Stop collaborate and listen.” Just making the rest of us bust up longer.
After dinner we dropped off my sisters kids and we went to Nicky’s house. We were lucky to catch a glimpse of M and M before they were dashed away to Logan. We sure miss them, when we are all together. Little Max is my best friend. I love that kid. His little sparkle in his eyes really just melt me. And I REALLY miss my Brother a lot. He is such a smart and loving guy. He has helped me so much and been a great inspiration for wanting to go back to school and excel. He is a great guy.
It was getting late, and so my sweet dudes were ready to go to sleep. Nothing horribly exciting, just emotional. But I was exhausted and needed a good nights sleep.
Wednesday was the day that I was planning on going to UVU and U of U to get my transcripts and get them sent to ASU. You see, I am going back to school. I have about a year before my bachelors is complete and I am aiming towards the Physician Assistant schools here in Arizona. I have passed all the classes needs, my GPA doesn’t suck and I need to do 2 classes and take the GRE as I apply around. So that is our “goal.” Well, that didn’t work out to get to the schools. Do to some poor management of time I ended up doing nothing that day until my mom and dad got up to the city.
Us at Grandpa Browns. Ipads were the BEST invention in my entire lifetime. THANK YOU STEVE JOBS!
We pulled into my sisters house and I just started crying. I had had a very emotional 2 days and between Tyler’s surgery and the accident back in Arizona I was a mess. Just low, low. My dad had been invited to a basketball game with my brother and his two cute M and M’s. We were hoping that his wife would come down with the other 2 boys, but they didn’t. So, we all packed up into 2 cars and went to Chuck A Rama Buffett. ( and eatting at a buffet ensured I could eat my feelings:) )That way I didn’t have to worry about finding food for my kids, neither did anyone and my kids are insanely picky and loud and crazy. So why not let them go someplace that had room enough and people enough to make sure no one died!
We had the BEST time. I LOVE my sisters. Holy crap are they insane people. We are like every other family and we have sister fights and we are mean and terrible sometimes. But at the end of the day, we have all three come to realize that we are sisters. We only have each other. And my mom was there.. laughing harder than she has in a long time. My kids LOVE her!
On top of my awesome sisters, Tyler was the lively hood of the party. He has a wonderful song about Becky. He will sing it if you ask him. Her name is Becky from Sir Mix A Lots “I like big butts song” and that song is his favorite to start singing in public. He has so many things he says that just makes everyone giggle.
Every time someone would ask him to stop, he would say “ Hammer time” or “Stop collaborate and listen.” Just making the rest of us bust up longer.
After dinner we dropped off my sisters kids and we went to Nicky’s house. We were lucky to catch a glimpse of M and M before they were dashed away to Logan. We sure miss them, when we are all together. Little Max is my best friend. I love that kid. His little sparkle in his eyes really just melt me. And I REALLY miss my Brother a lot. He is such a smart and loving guy. He has helped me so much and been a great inspiration for wanting to go back to school and excel. He is a great guy.
It was getting late, and so my sweet dudes were ready to go to sleep. Nothing horribly exciting, just emotional. But I was exhausted and needed a good nights sleep.
Thursday, February 16, 2012
A snippet of our behaviors
When baby Grays was just a few weeks old we went back to therapy, full swing, all three. We started with Ben in July. Tyler loved going and really liked the location and actually would participate. We have been going regularly until December when Ty got sick. We took almost the month off and started back right after we had Phenol.
At that time is when we were in full swing of our mean horrible behavior that has had us all in a bad mood. This is what our days have been filled with. Before this Ty never even cried at therapy. This behavior was happening ALL day, all day at school and in the car when we would travel somewhere. It has been VERY hard.
Ben, his therapist, is truly an amazing therapist and I am so glad we have him. He has worked very hard on getting Tyler stretched, moving and working hard. Again, this is NOT normal Tyler behavior. He is always so hard working and willing to do anything, but not since his seizure.
The last 2 weeks he has been somewhat back to normal. His behavior has been so much better at school. He has less anxiety and he is and has been able to calm himself back down. He has also been willing to participate in school AND in therapy.
One of the things we have been working on, even during time of crisis, has been his hips and his hip placement to help his gait. It was being worked on in the first video and also in the second. Same pressure, same movement but a TOTALLY different child. In fact, the second video we have a therapist we had never seen before, yet his attitude is all Tyler. None of this crazy mean one from the months before.
In this video they are changing the pressure on his hips so that his gait is altered. He is also walking on an adult treadmill for the first time in his entire life. Our awesome team of therapist ( Ben and Bryan) are talking seriously about ordering a set of theratogs for Tyler. They are pricey and of course insurance doesn't cover, so we have to think long and hard about spending the money. Not to mention figuring out where to take that money from. It would help his gait, his bones and possibly save his hips. But the best part, by FAR is how well he is doing. We had not ONE drop of tears. We were "winning a race" and playing basketball and being a very hard working and happy kid.
On the ride home, not a tear when baby Grayson started to cry. Not a tear at the cookie store and not a tear when we went to see Dad as the coach. Not a tear when we got home and not a tear for bed time. It is almost like he went to bed one day as one kid and woke up as another. We have started to ween him from his keppra and that is almost complete. One more week before we are totally keppra free but the good behavior started even before that. ( Making me wonder if it REALLY is the keppra) But none the less, it has helped lift my spirits. It makes the days less tiring. It makes me so excited to have Ty back and that we can go back to how things were. Enjoying the day and time that we get to spend.... together... as a team.
At that time is when we were in full swing of our mean horrible behavior that has had us all in a bad mood. This is what our days have been filled with. Before this Ty never even cried at therapy. This behavior was happening ALL day, all day at school and in the car when we would travel somewhere. It has been VERY hard.
Ben, his therapist, is truly an amazing therapist and I am so glad we have him. He has worked very hard on getting Tyler stretched, moving and working hard. Again, this is NOT normal Tyler behavior. He is always so hard working and willing to do anything, but not since his seizure.
The last 2 weeks he has been somewhat back to normal. His behavior has been so much better at school. He has less anxiety and he is and has been able to calm himself back down. He has also been willing to participate in school AND in therapy.
One of the things we have been working on, even during time of crisis, has been his hips and his hip placement to help his gait. It was being worked on in the first video and also in the second. Same pressure, same movement but a TOTALLY different child. In fact, the second video we have a therapist we had never seen before, yet his attitude is all Tyler. None of this crazy mean one from the months before.
In this video they are changing the pressure on his hips so that his gait is altered. He is also walking on an adult treadmill for the first time in his entire life. Our awesome team of therapist ( Ben and Bryan) are talking seriously about ordering a set of theratogs for Tyler. They are pricey and of course insurance doesn't cover, so we have to think long and hard about spending the money. Not to mention figuring out where to take that money from. It would help his gait, his bones and possibly save his hips. But the best part, by FAR is how well he is doing. We had not ONE drop of tears. We were "winning a race" and playing basketball and being a very hard working and happy kid.
On the ride home, not a tear when baby Grayson started to cry. Not a tear at the cookie store and not a tear when we went to see Dad as the coach. Not a tear when we got home and not a tear for bed time. It is almost like he went to bed one day as one kid and woke up as another. We have started to ween him from his keppra and that is almost complete. One more week before we are totally keppra free but the good behavior started even before that. ( Making me wonder if it REALLY is the keppra) But none the less, it has helped lift my spirits. It makes the days less tiring. It makes me so excited to have Ty back and that we can go back to how things were. Enjoying the day and time that we get to spend.... together... as a team.
Tuesday, August 16, 2011
School time, Bullies and Just Mean
When I was growing up school was always anticipated and we would get so excited for it to start. We spent the summer working to get our school clothes so we could buy what we wanted and we went shopping for new stuff. As we got older we got to go to the mall. I always thought that was the coolest thing. To know I got all my stuff from the mall. I still remember the dark blue guess jeans I HAD to have and I spent way to much money to have them.
Even when I went back to school some things never changed. I was never really popular ( I KNOW... SHUT THE FRONT DOOR!!) I had friends and I had some really great friends. I loved my high school group of friends and I adored my best friend Stephanie. ( who is due to have another sweet boy SOON!)
There were some kids that were teased HORRIBLY. Most of them had things "wrong" with them. One that I remember was teased to the point of cruel was John. I am pretty sure John passed away after high school. No one really knows for sure. But some mean stuff was done.
Last night I was watching the bachelor pad and the challenge was plain out CRUEL. They were throwing eggs at the people who they thought were the ugliest. It kind of made my skin crawl.
Add that to the man that decapitate his sons head and left it outside for the mom to find so she would " feel stupid" it really got my tears flowing. The little boy was mutilated. He also had cerebral palsy and his dad was "tired" of taking care of him.
I do not know what the future holds for us. But I am sending my sweet baby off to school. He is not " normal" by outside standards. He is "normal" for us. But he struggles. He has childish games he likes to play. He doesn't pretend play with others. He doesn't understand guns and war and Indians. Or start wars and start troopers. But he wants to belong. He wants to have friends. He wants to have other people be around him because he is him.
I guess I am asking if you are sending your kids off to school, teach them that there is different and that different isn't bad. That they have great things about them. To find the good and not the bad.
Subscribe to:
Posts (Atom)