On monday for National Cerebral Palsy Awareness day.
Have a good weekend and I will see you on Green Monday.
Showing posts with label Palsy Party 2013. Show all posts
Showing posts with label Palsy Party 2013. Show all posts
Friday, March 22, 2013
Thursday, March 21, 2013
Words from AZ in honor of world Down Syndrome day
" People with Disabilities are not (great amazing talented inspiring etc ) because they have a disability no they are these things because of their strengths talents and personality"
Happy World Down Syndrome day
Happy World Down Syndrome day
Wednesday, March 20, 2013
Everyone loves Max
This blogger does not need much introduction she is big in the special needs blog community . Her name is Ellen and her son name is Max. Ellen writes at Love that Max, which is easy to do because he has a great personality, and she is blogging for me today Here is Ellen and one of her Amazing kids She also has a daughter named Sabrina who is also amazing, Max.
Do you know someone with Cerebral Palsy?
Do you know someone with Cerebral Palsy?
Oh, yes: My son, Max, who's 10. He rocks.
Have they changed you somehow?
I think parenthood generally changes you as a person. But Max has been eye-opening and life-changing in many other ways. Before I had Max, I nee knew anyone with cerebral palsy, and wasn't close to anyone who had special needs. Mostly, I pitied them. Then I had Max. He had a stroke at birth and doctors told us the worst-case scenarios about him—that he may never walk or talk, that he could have severe cognitive impairment. I was pretty devastated. But what they didn't know was that Max had supersonic determination, and that luck was on our side, too. Max command-crawled at age 2 and walked at 3. Today, he is able to articulate words and use his iPad to communicate. He rides a bike. He has a great life. Max has shown me the amazing powers of human will. He has shown me that no matter what people say, you CAN achieve.
Whats one thing you wish that everyone knew about them?
I wish people understood that children with cerebral palsy should not be pitied. No matter what their physical impairments, in many ways they are like any other kid and deserve to be treated as such.
How are they awesome?
Max is bright, funny, determined, curious, charming, perceptive and ultra-cute. Also: He has great hair.
Thanks Ellen Got stories its not too late to submit them for more information click here
Tuesday, March 19, 2013
My Favorite cousin
Yesterday we heard from my Grandma on my father's side so today we will here from my cousin (D) on my mom's side.
Do you know someone with Cerebral Palsy?
Do you know someone with Cerebral Palsy?
Well it just so happens that I do! And it just so happens to be my favorite cousin,
AZ and D Spring 2006 |
(pauses for a brief minute) I don’t want anyone getting jealous or nothing so…. all my cousins are my favorite, but she is very dear and special to me. If you have ever judged someone by them having a disability then I believe I have simple cure to your ignorance, meet her. She is a very smart, determined, and loving young lady. When we were both younger she spanked me in video games on a consistent basis and no one could touch her when it came to Harry Potter. If having a Cerebral Palsy means you can’t do as much as the next person and that you will have limitations, then someone definitely didn’t tell her that. She defined the word fun and overcoming obstacles, and I’m very proud of her. Family is an important thing, and nothing brings family together like the holidays; but to me the excitement to see your favorite cousin (yep I said it) and hang out with no limits attached to our fun meter, it is always going to be a highlight that I will remember.
Cheers
thanks D I love you
Monday, March 18, 2013
Thoughts on CP Month
This post comes from my Grandma on my dad's side. She is my Facebook buddy. Note she used my real name so I changed it to AZ but all the rest are her words,
Grandma C and AZ Summer 2011 |
I make this attempt to organize my thoughts and perceptions on electronic paper regarding my grand daughter, AZ Chapman, who has had to work hard to accomplish some things that so many of us take for granted.
When AZ was born with CP it was unexpected; it has also been a learning experience for the family as well as for her, during these years of her babyhood, then childhood, then becoming a young woman.
One thing this remarkable young lady has shown us is how perseverance in the face of difficulty can accomplish a whole lot in life. Though not confined to a wheelchair like many people with CP, AZ does have to deal with some difficulty in physical coordination. Her determination and perseverance have given her the freedom / independence of being able to walk to a small shopping center near home, to take the bus and to successfully attend college.
I know it has often been frustrating for AZ when her body resists cooperating with her mind, and I am grateful for the helpful therapy made available to her. Mind over matter is not the easiest thing in the world, especially as a battle prolonged over your entire life! The wonderful improvement in her speech shows how hard she has worked.
Awareness: being conscious or perceptive. Being conscious of the difficulties and hardships of cerebral palsy can demand a lot of focus. It could be easy to make it the whole focus of your life and develop a real pity party attitude or use it to manipulate others around you. Happily for AZ, her parents and her siblings and even Zoe ( the family dog ) remind her daily that she has her own chores and responsibilities like everyone else in the family. The empathy and compassion that AZ has grown to have for others with a handicap are shown in her work with Special Olympics and in her postings on FB.
We all have difficulties and hardships; we all have our perceptions and feelings, we all have our ups and downs in life. We are all human and have our individual things to deal with. I find it admirable that those with some of the harder problems develop such determination and perseverance and empathy for others.
Thanks Grandma I love you
Have a story its not to late for more information click here
Monday, March 11, 2013
CP and Jamie
Here is another story about someone who lives with CP. His mom Maggie- is a single mom to him and his older brother Ben . She has started a campaign to help get her son Jamie a Wheelchair van. Maggie blogs at wittier moms and that's how he rolls. Without further a do meet Jamie
Cerebral Palsy is not a disease. It is an “umbrella” term that covers various conditions that lead to equally varying disabilities. It is primarily caused by brain damage that can occur in many different ways. It is not curable, it does not get worse, but there are many therapies and treatments that can improve function in people with CP.
I could go on, explaining scientific aspects of CP, or quoting statistics, for quite a while. And that would be very informative, honestly. But what it cannot do is tell you what CP is really like, or what it is like to care for someone with CP. Because these people are not scientific facts or statistics, and they are not their diagnosis. They are our children, our friends, our family. They are individuals, all of them, with incredible lives and amazing stories, each unique and inspirational.
I will tell you about what Cerebral Palsy is in my world:
My six year old son was diagnosed with severe brain damage when he was three weeks old. He was born six weeks early and spent the first six weeks of his life in a Neonatal Intensive Care Unit (NICU). Ironically, we brought him home for the first time on his original due date. His father and I had no indication that anything was wrong after 34 weeks of a normal pregnancy. So the emergency C-section and his swift transport to the Children’s Hospital of Philadelphia (the nation’s number one children’s hospital) took us by complete surprise. This was the beginning of my initiation into the world of special needs.
The initiation is rigorous, tedious, tiring, emotionally, physically, and intellectually draining, and just plain old scary. It is truly one of a parent’s worst nightmares to see your child with wires and tubes coming from every orifice, several veins and arteries, and even his yet-unhealed belly button. Then factor in that he is heavily sedated, and sometimes in an ‘induced’ coma, and has no idea you are even there. Testing and treatments abound, and words you can’t even pronounce let alone spell soon edge their way into your daily vernacular. The internet becomes your worst enemy with all of its erroneous misinformation.
And then, the day comes when they send you home with this child and you become responsible for caring for him. You have partially completed your initiation, but you must now prove to yourself that you can do this. A daunting task when first faced with it. But for me, it only took a little longer than expected to fall into a comfortable rhythm with his care and treatments. I learned about things that I never knew were possible, let alone even existed. I picked up so much medical terminology and knowledge that people still ask me today if I am a nurse. I’m not, but I can single-handedly insert a feeding tube with a swiftness you wouldn’t believe.
Then the world of special needs throws you a curve ball. When things start going your way, that massive brain injury rears its ugly head and presents you with a new ailment. In his case, it was seizures. Catastrophic and oftentimes fatal seizures. The treatment that finally worked to get them under control: an eight week course of two daily steroid injections in the thigh. With a squeamish and mostly disinterested father, Mom had to do it herself. But it worked, and not only did it get the seizures under control and to a point where they were treatable with medication, it also gave him back his eyesight which the seizures had completely taken away. He smiled for the first time when he was 11 months old. And he hasn’t stopped smiling since. Initiation passed.
Flash forward to the present. My son is now six years old and healthy as an ox. He is severely physically and intellectually disabled, but there is not a darn thing wrong with his personality. He is a total ladies' man, and loves all that is aesthetically pleasing (namely his young pretty aides in school...they are a must or he will have no part of it). But he gives more than he expects to get. You can tell when he enters a room, not with your five senses, but with that sixth one. And once he is there, you can't help but absorb him with the others. Everything about him is contagious - his laugh, his smile, his raw, innocent delight, and his completely unadulterated and unconditional love. He is disabled, true, and in most ways his disabilities limit his daily living skills to a great degree. But until you meet him, you can have no idea the extent of his abilities. He can evoke any emotion in you in a nanosecond, before you have time to register it. Most notably, he can wrench pure joy from the hardest of hearts with one steely gaze of his cobalt blue eyes. That's a gift. Maybe even a super-power, I can't say for sure. And every time he accomplishes something I didn't think he would, my heart bursts with a pride unrivaled.
Just over the past year, he has accomplished so much I can hardly keep track. New sounds and physical activities, better communication, particularly in showing that he understands far more than we ever thought. And just this week I learned that he is definitely my book-wormy son by consistently and accurately using his first distinguishable word: READ.
We are fortunate enough to have an amazing Challenger Sports league in our hometown, which gives him the opportunity to play adaptive and inclusive soccer, baseball, and bowling. He loves it and I love to watch him play. He has stolen the heart of one of the coaches, a young college student who has a brain injury of her own, and she is constantly checking in on him while doing a semester of study in Costa Rica.
He’s become something of a local celebrity as well. Don’t believe me? Come to the store with us some day and count how many people know him who I don’t know. Children from his school run up to him at community events and interact with him as friends and it thrills him to no end.
With the exception of his brother’s, I have never felt a hug so tight and wonderful, one that reaches right into the center of my heart. When he hugged me for the first time without me prompting him, I thought I would never be able to let go. Now he is the one who doesn’t want to let go. This is how I know he feels true love.
He is more than a diagnosis, more than CP, more than special needs. He is Jaime, and he is my favorite little brown-haired boy in the world.
that was a great story it is not too late to submit a story find out more here
Friday, March 8, 2013
Thursday, March 7, 2013
Wednesday, March 6, 2013
Spread the word My Story
This is an old post that I wrote a few years ago on the R word. This was originally published on my old blog Amazing AZ. Hope you enjoy
signing the pledge 3-3-2010 |
Back in high school I spear headed a new club called Dons Disability Awareness Club. One of the events we did was a Spread the word to end the word . It was a great event and many people signed the pledge and I still have numerous wristbands lying around the house.
People might ask me why I care so much about the use of the the word retarded. I mean I do not have a intellectual disability. I have a physical disability and a speech disability but not a intellectual disability so the word is just a word to me right wrong
When I was ten years old my parents signed me up for judo at the local rec center, The class met Tuesdays and Thursdays in the gym for an hour. I signed up in February and before long my friend ,she is no longer my friend,joined shortly after lets call her B. She was deaf and had NVLD, like me, but she was in inclusive education at the local elementary school which was connected to the rec. As faith would have it her new neighbors would move in and they had kids around our age. A fifth grader, a year ahead of us, a third grader and a four year old who was the only girl in the bunch. The third grader who we will call LM happened to have Down Syndrome. I met them when LM came to join a judo class after my friends mom told her new neighbor about the class and shortly there after LM and I became friends.
A few years later LM was at our same school in middle school and the three of us always hung out together,. At the time LM was into basketball so every lunch hour LM and I would gobble down our lunches and race to the blacktop to play in pickup games on one such occasion we were playing with a other kids in my grade, so older then LM , and LM was doing the best he could. He did not have dribbling down, needed reminders of what basket to shoot at, and got too close to the defender. Most of the other kids were vary nice to him and gave him the ball and not block him and let him shoot but on one occasion a kid who was dribbling the ball and LM was trying to steal it from her she said.
"GET AWAY YOU RETARD ."
LM sat down on the side of the court and I fallowed him. I was stunned. B's mom had told me not to say that word to LM and now i knew why. LM was a charming fellow. He loved basketball and Disney movies and did judo. He was full of life but the person who called him the R word had taken all that away from him as if she had popped a balloon that was LM's spirit.
.
To this day the memory of that day is vivid and runs deep. He is the reason why I started Spread the word to end the word at my high school last year. He is the reason why Spread the word to end the word will be there this year even though I no longer attend. LM was the first person I really got to know with a intellectual disability but he was not the last. B encourage me to become a special Olympics athlete and I now know many people in my area wit intellectual disabilities. People with Intellectual disabilities are people who have different personalities. These people can be cliquish while others can be vary sweet and accept everyone. But when people use the R word they lump them all together in to a group that is beneath the speak.
Having CP which results in unclear s speech I sometimes get treated as though I have a intellectual disability due to my speech. I know the feeling and it is not a good one. i see the mindset of thinking that they are above me and it does not feel right. I am intelligent but even if i wasn't I still would want to be treated with respect:Learning is not everything everyone needs to realize that a person is a person who has feelings we all cry the same tears. We all feel sadness. It is what makes us human so think about that the next time before use the R word,
Words DO Hurt
Spread the word to end the word
Tuesday, March 5, 2013
Its Supper C and W
This is the first story that I have for CP awareness month it. It is so cool because I just met this blogger through email with their story and blog post. C and W are Ail's sons she blogs at Super Mario Twins. I love supper Mario and all nintendo games so needless to say I love the blog title.
Here is Ali's story.
These guys are soo cute used with permission |
My name is Ali and I'm the mom to twin boys, C & W. They were born in June of 2011 at 33 weeks. They spent a couple of weeks in the NICU just for growing and feeding and never had any major issues. When they were about 10 months old, we realized that C still had not met some basic milestones like sitting and rolling. After an evaluation by the infants and toddlers program and then a neurologist we found out that C has cerebral palsy. He has spastic diplegia and struggles with his gross motor skills. It's been almost a year since we've received the diagnosis and C receives lots of physical and occupational therapy. He has been making wonderful progress and can now roll, sit, crawl and even pull to stand! He's able to walk around with our help or with the assistance of a walker. He has always been our sweet and smiley little boy who is the absolute best cuddler in the whole world. A snuggle from C will truly make your day! I really admire his spirit and laid back attitude. He's really developed a sense of independence now that he can crawl all around. When we first found out about his CP, I felt very sorry for myself and sorry for C because I knew he'd have to work so hard to do simple things that come naturally to others, but now I'm just so proud of the little boy that he's becoming and all that he's been able to accomplish already. He inspires me to push myself and do hard things. We love both he and his brother so much and there's not a thing I would change about our family since being a special needs parent has made me such a better person. Thanks for giving me the opportunity to share my story with you, AZ!
Thanks Ali for sharking your story with me look forward to reading your blog
have a story about someone with CP send it to me AZChapman1991@gmail.com and it will be posted this month
Monday, March 4, 2013
"Its not El Captain"
Steve on stage he received the Kaiser ThriveAward |
Nice to see you again Mr. Wampler. |
My Mom said, " Aw what a beautiful family" as she took this photo |
But that is not the best part The best part was that I got to meet Wampler's children. That's right Wampler is father to two beautiful kids and along with his wife Elizabeth they have a beautiful family.
Meeting Wampler's son , Joe He was ten when his dad climbed El Captain |
Wampler gives me hope for a future. I want to be a mother and wife to a caring husband. I want to have my own family and Wampler gives me hope it can happend. I can become a mother and have a typical American Family.
AZ and Steve Wampler |
After the movie we were going home but then I spotted Johnny Rockets and I had to have a Strawberry milkshake before we went home. As we were driving home, my mom said that I have no excuse because anything that I do that is challenging is not EL Captain,
Great Milkshake to end a great night |
For those of you who are reading and live in the Bay Area Wampler will be screening his flim Thursday night. I highly recommend going. For more information click here
Friday, March 1, 2013
March Palsy Party
Hay guys so today is March First which means it is CP Awareness month 2013. I have so much to share with you guys over the next four weeks. For me I am kicking off CP month by going to visit my friend Steve Wampler he is showing his movie near by and tonight he will be attending should be a fun night. Tune in Monday for pics from tonight.
Here is the trailer
PS if u want to be in on the action is is not to late to submit a story for the blog see below for more details.
got image from http://www.pagecovers.com/covers/causes/cerebral_palsy_awareness.jpg
Here is the trailer
PS if u want to be in on the action is is not to late to submit a story for the blog see below for more details.
got image from http://www.pagecovers.com/covers/causes/cerebral_palsy_awareness.jpg
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