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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.    

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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