Cerebral Palsy Photo Party Day 14: Grandma says

 This  is an old  post but its   too good  not to  re share.  My  grandma  wrote something last year on my blog for CP month.  Reposting in case you missed it.

 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.

 

   Don't  forget to commet  before you leave.

Cerebral Palsy Party Day 13 : Its always tough to say goodbye

          Today's  picture   is my last  day of kindergaten.  I  look sad but it makes  sense  because  transitions are very hard for me.

             For  me  boundaries  are very hard for me.   I think this is due to being bullied a lot as  a kid.   Its  tough to  grow up disabled because   you are more likely to get bullied and  regected rom  peers.   I am a  friendly outgoing person but   making  solid friendships are  a challenge for me.   I get along great with  teachers and stuff  but for the longest time they kept telling me  that  they were not my friends   All  that changed   when  professors  befriended  me in jr college.   I am  grateful for that because so many people have enforced those boundaries   When  people are willing to  listen to me  I   feel  great because  so often I am on the sidelines as life goes by.

Cerebral Palsy Party Day 12 : My hair

     

  Yesterday  I  told you about my  feet  today let me tell you about my hair.    My  mom is African  American and my  dad is hispanic and  white.  When  It came to  hair  I inherited long hair   from my  Dad's  genes,   curly hair , from my mom.Sometimes it makes  for good pictures  like todays. 

 I  can not do my  hair and   I hate  getting it done because it is curly.  Add  to this  the fact that I have an  habit of  rubbing   my head  so it sticks up.     Shortly after leaving high school ,  I discover the power  of  hats.  Some  people might see  me  wearing a hat and think that I am a  hobo.     To that  I  have  the following to say.

Dear people who think I am a hobo 

I have something called CP which messes up my hands so I can not do my hair. When I was younger someone always did my hair in the morning, but it would stick up after rubbing my hands through my hair so it would stick up, so I  wear a hat. The hat has no correlation to my intelligence or my social class its just the fact that I have CP. Thanks and good night and the next time u see someone with a hat do not judge them because until u learn the whole story I have a disability and am doing the best  I can and no I do not want pity thanks 

Cerebral Palsy party day11:feet problems

 Yo ho  yo ho a Pirates  life for me.  Here I am  with  Princess on top  of the boat that was at a Children's Meausum .


     My  Cerebral Palsy is mild .  In fact  throughout my childhood. I  would say that my  feet gave me  little to no problem.   As I have aged,  I have noticed that  my feet are giving me problems.  My  endurance is not what it used to be.    I am  finding that   I have   to sit down more, or risk a throbbing pain in my foot.  I  have also found that I can not localize pain  very well.  For example  I  think   my feet hurt at the arch, yet  I  do not trust myself.  Happy st patricks day

Cerebral Palsy Party Day 10: Soccer time

           

     The fall after  I graduated preschool.  I  turned five and started full inclusion pre-k.   I have a September  birthday  so  my  parents  wanted me to  wait another year  before kindergaten. They  talked to many people  that recommended that I  get another year to grow and learn  before  I start formal schooling.  Even though it was  pre -k  ment a new  school,  a privite traditional school with a small class size.  

 Soccer Star 

It also ment  soccer time.  I played soccer  on the neighborhood  tradtional   U5, bunch-ball  I got a great coach  who included me right from the start.   I would later  play  with him  in U10.  He would  nominate me  for  an award the second time around  and I would win.   He also  had a  daughter who attended out church.   I  was able to build community all around me because of inclusion  It worked.  Inclusion rocks.

Cerebral Palsy Party Day 9: Preschool graduate

                   Today's pictures  come at a happy time for me.   It is  the first graduation that I remember 

  yeah  I  remember  graduating preschool.  It was a special time. My parents already made the choice that I would attend a private elementary school  which was not set up for kids with special needs which ment that none of my fellow classmates  would  have me in the same class.     I was on to bigger  things.     I had no idea  that  I was changing tracks  It was still school for me.

  Getting my diploma
 from  teacher  J.  She would continue to tutor me  at my home

 I was soo cute 

Cerebral Palsy Party Day 8 : Brining out the Marshmellows

  So todays post is going to be long but it is  going to be helpful.

 The biggest  way that  my Cerebral Palsy affects me is speech.   I understand the world  around me but   when  I try to speak the words do not come out clear. My  arch nemesis is the evil  K.

 For a longtime  I could not say the /k/ sound among other sounds.   I have a /k/ sound in my name which  would lead me to mispronounce my name. So "cookie" sounded a lot like  "tootie".

  A  great way  for others to understand  whats its like  for me to talk is to take marshmallows and  without swallowing them  try to talk.  For  preschool and kindergaten kids.    Have them  sing a song that they know like   Old McDonald had a farm while having marshmallows in there mouth.



  If they are  older you can take it a step forward.


 Steps
1 Line up outside the door.
2  one by one enter the  classroom and  given a card with a single word.
3  Sit  down  quietly  Don't  Talk
4 once  everyone has a word  hand out marshmallows  try to  have students rearrange  themselves in ABC  order with these rules.

       They  can not use hand gestures.
       they  can only say there word that is on their flashcard aka no sentences.
         They can swallow there marshmallows
  Explain that this is what  some people with CP experience everyday. The  pain the frustration the inability to communicate 

  I  did  the ABC order  activity in a linguistics  class.   The students learned a ton.  One told me that  if she  ever has students, she wants to be an elementary school  teacher,  with a  speech impairment they are going to bring out the marshmallows.

 got  images  from

 letter K
https://fbcdn-profile-a.akamaihd.net/hprofile-ak-ash3/50271_239794985914_7024254_n.jpg
 marshmallows
http://www.farmersalmanac.com/wp-content/uploads/2012/08/Marshmallows-thumb-420x240.jpg