Happy Easter

What would you say to a new parent in honor of national CP Day

 CP did not prevent me from being a cute baby

   So today is the  day to  go green to honor those  like me who live  with CP.   To celebrate  I  have asked  some people on Facebook.  what advice they would give to a new parent  who just received  a CP  diagnoses.   Here is what they  said. 

  First I asked in a CP group on facebook

 "That no matter what she needs to remember that regardless of the"Label" her child  is still her child the same as yesterday and nothing will change that , and though therapy etc is important, so is being a kid - remember to still have plan old FUN!"

  Fall 1999  swinging away

"Cp does not give you limits, live life to its fullest "

 




"Your child has cp, they are not cp. it is simply a part of who they are,its does no define them"





 "Expect your child to be able to do everything(albit on an extend timeline) until she clearly shows that she just isn't  physically capable  if doing it. If you want other to treat your child like they're any " normal kid then you a s the parent need to treat her that way"


 "For me.. I wish someone had told me to work on his communication. That milestones will be there just different ones. Its Ok to cry and it's ok to ask for help. treating them normal is so important.. [my son]is not able to walk.. but I always put him on the floor to play.. he would roll around.. sometimes whacking his head on the roll cause he didn't have the control at

  cousins  may 2012

 first.. but he didn't cry so I didn't make a fuss. because I treated him like any other kid.. he know is a pro at rolling.. he even log rolled, pushed him self from his room into the back yard to get to his puppy.. he's a normal kid.. with a few hiccups he's working out."

"Remember Dr's are practicing for a reason. I personally will not get a surgery without talking to people who have experienced it before. I was told, "If it sounds too good to be true, look into it, it might just be."


" You still have the same child you had before the diagnosis..."

I  then asket my mom  and she said 

"I would tell them to be thankful for their child and prepared for the amazement of the power of unconditional love. Your child will teach you many life lessons and demonstrate the strength and resolve of the human spirit. With  AZ, I learn every day just how amazing she is!"

 

I also asked other people with  CP  ( cause  we are the experts  right ) 

"it's not the end of the world, and your child is whole and perfect just the way they are:)" 

 piano concert spring 1998

"just to love the child as much as you would without the cp, and the biggest thing is even though it's important to listen to doctors, don't let the doctors tell you the future of the child. help the child reach it's full potential no matter what that may be."

  My thoughts 

  Aloha  Spring 2000

  Assume that    your child can understand.   Know that  raising your child  will have its ups and downs.  your kid will bring  you moments of laughter and moments of joy and  that they are not  broken  and  do not  need to  be fixed.   Also know that your not alone millons of other families are dealing with CP  as well.

WEAR GREEN

  On monday for National Cerebral Palsy Awareness day. 



  Have a good weekend  and I will see you  on  Green  Monday.   

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

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?   

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 

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?

 

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 

 

No Comments

  Hay  guys   If  you read my post can  you leave a comment it gets lonely with no comments

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 

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 

Back in the day

       

    Please comment before you leave do u have a favorite post from the week. Talk to me

True Inculsion

Great video

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

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 

"Its not El Captain"

Steve on stage  he received  the  Kaiser ThriveAward  

  So last  Friday I went to see   Wampler's Ascent.  Its about Steve Wampler's climb   of El Captain in Yosemite  CA.

 Nice to see you again Mr. Wampler. 

 Wampler is not your average mountain climber  he has  CP and uses a wheelchair to get around. In order to climb the mountain he  was sitting in a chair and had to do pull ups. He was  pulling to raise money for   a summer camp that he help restart  after it got closed down.  He had attend that camp  as a kid and it was  the turning point in his life where  he realized  that he  can do anything.  He went on to UC Berkley.  It was very exciting to watch.  My mom and I  went to see the movie  My  mom  usually  fall asleep during movies and i thought  that  she would  have  fallen asleep during this one as well, she did not sleep well  Thursday night but she did not; however, she  did not That how exciting it was.

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 

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