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. 

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