National CP Day 2016 : Wishing Out Loud Please Do not pretend

          On this national CP Day  I  have  a request.     Do not pretend.



        I am a 24  year old college senior,  who graduates in June.   I understand  a lot of things.  I love to  read and devalued  Harry  Potter Books in my youth.   I  am very  good writer, despite   not having the best proof reading skills.   While  math is not my strong subject,  I can count change pretty well and worked at a Cash Register.

 Me Jumping rope. Notice my right arm is bent 

 Yet  it is  still apparent that I have  a disability.    My face mussels are very  tight and I can not control my  eyebrows at all .  My arms sometimes bend in different ways.   This does not cause me  pain and in fact it is only looking at photos and videos  that I realize that my arms bend in a  unique way.   I  have an  uneven gait, and  I do not always dress  the way other young adults  dress due to  sensory issues  and  always  being cold.

  The Biggest  thing that happens though is my speech.  I have a speech impairment.  My muscles in my mouth are  tight.  I do not open my mouth wide when I am talking.    I have dysarthria  that  is the result of Cerebral Palsy.    

  Please  Do not pretend that you understand me when I am speaking.


  My real name is hard to say.  Its four syllables long  with an R in  one of its syllables.  I hate my name but have no  ideas for a new name.   I  am still considering  a new name.  

 Me Eating a Banana.  That is how big  my mouth is 

     In the  meantime  if  I  come up and introduce myself to you and you're not sure what  I said, or anyone with a speech impairment  please  I   ask you to  to  asks us. to repeat what we said   We know  when you can not understand  and it sucks.  I know you think that we can not understand the difference and its an awkward situation; however,  it hurts.

 When you  pretend  to understand me.   I feel disrespected,  I  feel  like what I have to say is not important - which  makes it hard  especially since I'm nearing  the age to enter the l job market.  Please  presume  that I am making sense.  Please   be a little patient and   work with me;  ask  me to show you, or write it down.   Enlist the help of  others around you.    Let's work together  to  get my point across.  Because  what I have to say is important.

Cerebral Palsy Party An interview and a chance to work with AZ

 Hi guys   so   today I am featured on Tonia Says. Go check it out.  


 I am also looking for people to work with me.    Cerebral Palsy Party is a book that I  have  written  that explains what CP is to children ( think between the ages  of  5-10 )    There are no good books to explain what CP  is.   Its a picture book  without  pictures.   I am looking for an  artist to help bring  my book to life.

 Here is the flyer

 Please share this post to  help me find an illustrator.

 Don't forget to  Wear Green Tomorrow for  national  CP Day. 

Cerebral Palsy Party What inclusion look like

   

 Hi guys today  is  #whatinclusionlookslike twitter chat today.  2pm so I thought I'd show you /tell you.


 Inclusion is having parents read your bedtime stories  and expose you to books about different cultures  and  races.  Inclusion is   knowing that  college is  expected of you when you graduate high school

   

Inclusion  means  having access  to the playroom at the same  time as your siblings. 

Inclusion is  playing  sports on traditional recreation leagues

And playing Piano (or doing whatever  after school activities  that  you / parents want not just the things for kids with disabilities  

 Inclusion is  about going on field trips with your class because   you are just another student  

 Inclusion is about knowing your siblings friends   because  you go to school with them. 

 Its being able to play sports on the same team as your siblings 

  Its about being on the School team ( even if its just a practice team)

 Or  Being a Team Manager 

 Its about going to  your high school's Senior Prom with a date.   

Its about being   a leader and educating others about  things you care about .  I founded a Disability Awareness Club back in high school.

 Its about having  General Education Professors be friending  you to the point where they find some Green to wear on World Cerebral  Palsy  Day  then wanting to take a picture to  put on their Instragram 

 So to rap it up 

  Inclusion is 

 LOVE 
 HOPE 
 KINDNESS 
   FAMILY MEMORIES 
  

AND  CELEBRATIONS 

LOTS AND LOTS OF CELEBRATIONS   
 FOR THINGS  BOTH  BIG AND SMALL

AZ CHAPMAN IS A College Senior with Cerebral Palsy,  Non -Verbal Learning Disorder and Anxiety.  She has   been blogging  on blogspot since 2007.  She loves  sports advocating for inclusion  and   Nintendo Games. 

Recycle Post Talking and understanding are not mutually exclusive

Add caption

 I am  re posting because   I will be writing another  post related to this topic  later this week.

Talking and understanding are not mutually exclusive

                        Lets  say  a genius  who  spoke  Latin  were to come to  the United States.  Now  lets   just say  for the sake of the argument that  there was  no one else  who spoke  Latin.    Is the  genius  still a  genius.    Of  course  many  people would say   he just  needs    needs to  learn  English.       Well  what if there was  a  person  who  could not speak  at all  and  had  no device,  could he  be  a genius?
`   
It  angers  me as a person living with a speech  delay  when  I hear  someone  who has  no  speech  due to  disabilities, and do not have any  device  and  are  placed   as  limited  intellectual  ability.  It  really   angers me    because   the person does not have a  opportunity to  prove  there intelligence one way or the other.  Why am  I pissed  off  let   me  tell you  my story.

 bookgal  princess  and  az We were so cute 

          I was  born   September   1991   a month  prematurely   resulting in mild Cerebral Palsy.  As  a newborn  I could not suck  from a bottle  to well  a feeding tube was  placed  though my throat so  I could  eat.   When  my parents  took me   home  I  had a  hard  time  breast feeding and my  mom had to pump her milk out  and put it in a bottle.  My  muscles  were soo  weak that   feeding took  forever. 




 When  I was a  toddler   I had difficulty communicating. I leaned sign langue  to communicate. I  remember saying and  signing  cracker  in the kitchen.  Using  signing  I was  able to  express  my wants  and  needs  until my speech   came  along.




 With me and  my  speech  impairment  repeating  words  is   frustrating  especially when  no one  understands  me.    I  hear myself  speaking clearly, My  mind   makes  the ideas  and  the words   that come out   are   fuzzy.   I  remember  saying answers  in class being  told  I was  wrong and   someone said the  same thing  and got it right.      That means that I  got  the answer   right.   


  Now  for me  I have a voice . Its  not  the best  but its  a  voice. As  frustrated  as I must  feel  it must be  ten  times more frustrating  for  people  without a voice.  I feel for those  people  and   can not igmane  being inside  and  not having  a  way to  communicate  and   because of  not being able to communicate  getting   labeled  as  worthless.    Having the school system  write  you  off being  isolated  from your peers.  Being  talked to in a high  pitch  voice  every day when  you  are not a  kid. Then  because of  your physical limitations  being  labeled   as  being as  smart as a  toddler.  That is not  fair  nor is it  right.  I  know  all about  history   understand  Spanish and  english  have a  talent for writing   can  play chess    yet I can not  say the  L  R   K   G sound   easily.  Does  that  me   not smart  no. Now  igmane   if  i could not talk or  had a device yes  I would not be able  to   write  read and play chess  not because  I   was  not smart  but because i  had  not had  the opportunities  to  learn.     If  you are reading this and have a child  who can not communicate  my  advice  is   to  go to the ends of the  earth  for your kid, Buy the i pads   the dynvoxs help your  child  find their voice.   If your  the  parent   or  know  someone  whose  older  who can not communicate   do the same thing.  The   sooner    you  get it the better but do not give up on an older   person in fact you need to get  the information them faster to make up for loss time. In the  meantime  continue talking to   the person   as  would with   a person as  there  chronological  age. ( So     talk  to a baby  like  a baby
 All people deserve   a chance to connect with others.  It  does not  matter how smart they are everyone  wants  to connect  with  others.    Think about  it  this way   if the person  is  said  to have an intellectual disability  and you  talk to them about  stuff that  is  to hard for them  then  they it will be  to hard, but if   the child is smart  but has not fond their  voice they will  observe  it like a sponge.  Please  remember  speech  is  very  complex  and hard but   the   spoken word  is   the end result.   The  process  may still be in place.








  

He Has

He  Has  been on the earth for  22 years.
  He has  a great job.
  He gets around in our town independently.
 He   has co workers that adore him.
 He loves to play basketball and swim.
 He has  friends that are close to him that he considers part of his family.
  He  loves to see movies.
  He has his Eagle Scout.
 He has  an extra chromosome.

  Honestly   I hope you do not think  that  he is a different person.   He  has been a constant  friend in my life since  I was ten.    LM,  LM has  Down Syndrome, and he is a normal  young man.     Yes,  He does navigate the world without someone.     In fact there are times  when  me  him and his best friend, who also has DS,  have walked  downtown to grab a bagel. I do not live in the  same area  as they do so they were the ones guiding me.  LM  is amazing because he is doing things that some said  would not happen.  I am so proud of  LM. He  rocks.

     

Cerebral Palsy part eleven Playing unified

 A great video.  Click  Here to watch

Cerebral Palsy Party day ten Skiing

I love skiing  I have not been  in a while but it isn't for lack of asking.  I love  going down the mountain.   Skiing  is one of those sports that can be made adaptable for all kids.  Click here to see     adapted Skiing in action.

 Skiing in Tahoe a few years ago 

Cerebral Palsy Party day nine : Ted Talk

  Hay guys  so  I  have a final  on Wednesday so   I am sharing videos.   Today's video  is a Ted Talk by Shelly More.  I met Shelly  in a  inclusive  fb page filled  with people with different diagnosis teachers and para educators.Click here to listen.

Cerebral Palsy Party day eight Great song

So last night I saw wicked  , we had front row tickets,  it was really good and had a lot of disability  themes. I really liked it  I will blog more about it next week.

Palsy Party 2016 Day Seven :General Education Physical Education

 

     I am a big believer in  inclusive  education, I am a die hard inclusion fan for life, This will never change.


         In  Academic classes  I can pretty much keep up. I can go to class  sit down and learn. I can write papers and take tests without modifications.  I have never need modifications  throughout my school  life .  My  IEP  gave me accommodations and speech therapy.

 Art Class 2010

 When it came time for  recreational classes  art and  PE, things looked a lot different.  In high school  I took a ceramics class.  I needed a lot of  help  because of my fine motor difficulties.  I enjoyed  painting  my pieces and still have a bunch of my   work from that class.

   Now  I am a college senior. When  I went to a consular they  told me  I needed two more units of PE.  Ok  no problem.  I am a big sports fan and my CP  is very mild,  I  walk without  any adapted equipment.   I took  Yoga  last  semester  and  Judo, from a  Jujutsu perspective
  this  past quarter. My last class was last night.

Yoga 2015 

  Now  Yoga was really hard for me.  My CP  though mild is hard has affected my  balance.    I would pose and then fall. I spent a lot of time  laying down in  the pose.  My teacher was nice  but  she couldn't help me one on one because of a big class.   At the  beginning of the semester,   I was  seen as a behavior problem because  I  fell into other students.   In the end I did Yoga in the corner  using a  big gym mat.

  Now  judo this semester was much mo.  The teacher went very fast but was willing to  teach me deferent paces.   A big thing  that made a whole lot of difference was another student.  He works as a PT  aide in a hospital  and knows all about CP.   He was able to break stuff down  and allowed me to learn the moves.   He gave me balance  activities   to do.   I loved working with him.    I wouldn't have been successful without him and am truly sad that  class is over because I do not know when  we will meet up.   We were paired up for the final and  he was able to talk me through the moves.   I got a lot out of that class  because   he was there.  I think  the class would have been more frustrating  if he was not in the class.   He has made all the difference.

Cerebral Palsy Day Six. mini me

 Me as a  newborn

Cerebral Palsy Party Day Five:When we are not there you miss out

 So yesterday I  talked about my friend  KB,  KB  is my good friend from my private school;however, it is lucky that we are still friends,but more on that  later.

   These past  month , I have heard troubling news  from   three  mothers . One parent had  pulled her child out of school, another  was told despite progress ,he  had to switch schools. Another  school ,of faith mind you , rejected  her  child.

    These three children  resides in the United States. These three children are missing  out on a good education. Why?   Because these three children have Down Syndrome.

    When schools deny   students with disabilities  they undoubtedly miss out on inclusive education;however , they aren't the only ones who miss out.



 GENERAL EDUCATION TEACHERS 

Inclusion  makes Everyone happy. The women
on the left was my 9th grade PE Teacher.  Picture is from
Senior year  Winter 2010. My mother had to advocate
 for me when I was in this class freshman year;however
by senior year I was able to be  ball manager  for the
  Laddies Varsity team.  Took her three years before I was
able to show her the power of inclusion.   More on PE
later this month.    

  General Education teachers miss out on an opportunity to know and  teach a student with disabilities.
They miss out on  learning new ways  of  reaching all learners.  They miss out  on becoming better teachers  and  celebrating   those little moments that to general education students don't realize;however, when   student with  significant  disabilities  does them they  realize  Just how big  these little moments are.   They miss out on sharing there knowledge with  kids.    They miss out  of approaching  things in a new way.   They miss out on all of this because   the district , or administrator

 GENERAL EDUCATION STUDENTS

 Me and a friend from  high school playing golf  spring 2015 For more
on this Click Here 

   Students without disabilities   miss out on  knowing a person with a disability.   These guys  miss out  at knowing at a formative age that  disability is a part of diversity.   These kids miss out on learning about an unique person.  So often   Biology text books talk about Down Syndrome or  other disabilities, however,  how cool would it be if instead of learning about  this abstract concept  they learned  from  hands on experience of  talking,  playing,   dancing with  a  person with Down Syndrome.  How empowering would it be  if  working with  students with disabilities  taught them the  abilities that we do posses,  yes  we do have them.   If these kids grow up and  become adults that have  children and they  receive the news that  their baby or toddler, depending on the diagnosis, has a significant disability  perhaps  they will   not  be so fearful and chose life.  Perhaps these students become doctors  and  will be able to treat new parents and  patients with disabilities with respect.


So  about  KB.  Well  when I was kicked out two times   at school. I saw him and all my friends from the private school less  often.   He admitted to me that it was hard to hang out  because  he was busy with school.   As bad as the private school was  I am  thankful that I went because I made some lifelong friends.   But we all missed out because  I was not included.

Cerebral Palsy Party 2016 : Friendship

  Hi  guys,

 Today I am  going to talk about friends,  I have mentioned earlier but it is fine time to post an update.  A lot  of things have changed since I last blogged about this.


   You may remember that  I used to go to a school that wasn't inclusive.  It was a private university.   What you may not have known is that I made great friendships there.  One of them was a  biology student.  In fact one of the two reasons , the other being my mother, why I went back in the fall  of 2015, was to be around   this guy.   He is that awesome.  He wants to be a doctor and I think he will be the best doctor in the world, he is smart caring and does not judge .    He graduated last year, and will be applying to medical school next year.    But in the meantime he will be spending some time helping  disabled kids and endangered animals in  South America for a few  months .   He leaves  tonight.   On the  last day  before  he heads to the airport, he  spent some time with me.  So  yes   he truly is a friend.
                     I think the key to a friendships is that we are   equal.  He  helps me  if  I need help, but  I do my part to help him as well.   For example ,  he  may drive me to a restaurant, but I  pay for the  meal.   He listened  to me when  I was having difficulty at my school, and I listen to him as  he has problems.   I am so  glad that I have a friend in him.  I will miss him and eagerly await his  return in May.

http://www.informationnine.com/wp-content/uploads/2014/12/237.jpg

Cerebral Palsy Party Day Five Becoming Bullet Proof.

  So  I just finished watching an amazing documentary and film.   Bulletproof   is about a bar tender  who  is under threat by a gambler  who wants to take over the  bar to make an hotel.    Sounds like an ordinary movie   right.     It is but it isn't as the cast is comprised of people with and without disabilities.    All the main characters  have  a disability  whether its  Cerebral Palsy  Williams Syndrome or Down Syndrome.


     Since its Cerebral Palsy Awareness Month.   I am  going to talk about AJ.  AJ is man that has CP.   He is in a wheelchair and tends to be trapped  at his home a lot with his mom and sisters. AJ acted in many  plays when he was younger  so when he heard about the program,  which  shoots in  the  LA  area, he  begs and begs for a chance to go to camp ,  I tend to  do this a lot too.  The Film  Becoming Bulletproof  follows his journey to make   Bulletproof.


         I  really liked this movie.  As a disabled  advocate I have always been all for inclusion  of people with disabilities both  among disabled people, physical  and intellectual,  along with people without disabilities. This movie does both which is refreshing to see.  One of the things that  was hard to hear as a person with CP was when AJ says that he feels like he doesn't have a chance to give back. As a young person with CP  I totally understand where he is coming from.  I feel fortune that I am able to give back  but it is hard because some people are unwilling to accept the help.


 This is a great movie that comes highly recommend.

  Here are some links

 the Trailer





  The movie  Bulletproof

Bulletproof RECUT FINAL 720 MED from Zeno Mountain Farm on Vimeo.


  A link to   the organization  Zeno   Mountain  Farm 

Cerebral Palsy Party Day Three: Inventions that increase independence

   Long time readers may remember that  I used to have a baby sitter, T,  T  stayed with us from the time  I was in  Kindergarten til  I graduated from high school.

  T and AZ   at  AZ's High School Graduation  2010

 One of the things  that T did for us kids was laundry which meant after  she left I  had to do my own  washing. This  posed some challenges for me  due to find motor and forgetfulness.  When it came to soap  I could never  navigate the soap.  I would load the clothes in the washing machine  then  have someone help me pour the soap into the right compartment.



  When my family discovered pods, pictured below,  they totally allowed me to be independent in my laundry.  Pods are soap packs that you put into the main compartment with the clothes.    It makes it easy to  wash. These can be found at many stores and are not  too  expensive.  These help me  be independent.          

  You  put the thing on the right  in the wash.

 Tide  DID NOT SPONSOR  THIS POST .  THE VIEWS EXPRESSED HERE ARE MY OWN

Palsy Party Day Two : Never a good word

 Today is Spread the Word to  End the word.

 The word is Retarded.  It is not a nice word.

 In a US  History class at my private college.  Which  was not inclusive.   My professor used this  word.  My  stomach  dropped.    He said  something about  the fact that   Cotton gin  was not  invented  retarded   the  growth  of cotton.


 Now  you  may be wondering  why this upset me, it still does  because  my reaction to it  was a reason why I was not permitted  to attend  the next year.  First off  the professor  yelled at me  saying it was a fine word to use in that case. Second  the administration  defended him, including the  disability person.

   I am sorry but when is that word ever okey. Why is it that a term that is considered hurtful to  people, children and adults,  ever be okey to use.    If   a student with an intellectual disability  was in the class they may not understand that you were not talking about them.  That is why it is never a  good word to use.

  Please go sign the pledge  and eliminate this dreadful word from your vocabulary.

Palsy Party 2016

    Hello guys it  has been quite around here.  I am sorry.   I am in 13 units  which is challenging.  I am  going to  try to blog every weekday  for CP awareness.   Anything you want to hear about in particular  let me know in  Particular  let me know in the comments BE SURE TO TUNE IN  TOMORROW AND THE REST OF THIS MONTH.