Happy World Cerebral Palsy Day everyone. Here is the video I have been working on. It is so fun to be able to make this because it shows us that we are not alone. This video is the first upgrade because the pictures now have backgrounds. I worked very hard on this and hope you enjoy the upgrade.
Wednesday, October 5, 2016
Tuesday, October 4, 2016
People like me on TV : What I could relate too in Speechless episode two
So today I will be talking about Speechless episode two. Today I want to talk about the adults in one's life .
On this episode of Speechless. JJ says that he wants to have an aide that his mother doesn't agree with. In the first episode, Mimi and Kenneth get into a fight at the school when Kenneth uses the word cripple, but at a carnival JJ and Kenneth team up to save JJ's younger brother from the bullies.
When your a kid with disabilities you tend to have many adults in your life. For me I had OT, PT,ST an aide along with the typical adults in a kid's life. For me the problem was compounded when I was diagnosis with Non Verbal Learning disorder , which makes social skills nearly impossible to learn. For me I get along better with adults. As a teenager, I had favorite teachers like my Freshman Spanish teacher, and my Senior English teacher along with my golf coach.
As a college student I made friends with many of my professors at my community college. In fact they are the ones that made me consider that place a second home. The key about those people is that they are not connected to my parents. I love my parents a lot but sometimes I need space away from my parents to talk and interact with adults.
JJ obviously needs that space as well which is why he insisted that he needs Kenneth as his aide. I can not wait to watch their relationship grow as the show progresses.
Speaking about friends that are adults here is a picture of me and my friend sporting our green for World Cerebral Palsy Day last year. Tomorrow is World CP Day so do not forget to stop on by the blog for the world CP montage.
Here is a preview.
Monday, October 3, 2016
People like me on TV
Hay guys. I am sure that most of you know about the new ABC show called Speechless. Its a American sitcom about a family of five. The mother, played by Mimi Driver, is a fierce advocate for her son JJ because he has a Cerebral Palsy. JJ is played by Micah Flower who himself has Cerebral Palsy. This almost never happens. There have been two episodes so far and while I have a milder form of Cerebral Palsy there are still things that I can relate to. I am going to be blogging about them every Thursday but since I am down two episodes I am going to use today and tomorrow to blog about it.
Zack Anner has talked about how mothers that have disabled children fight for their kids, so I am going to say that my mom has always been my best advocate too. She fought for me to have a college education.
The thing I want to talk about is how people talk down to the disabled. This happens twice in the episode. Once where their in a parking lot and people are mocking him and the other time is when JJ enters class.
This has become a big issue for me recently. I was hoping once I graduated from college that I would not have to face this. I was just recently at a disability conference where people taught that I did not know how to read. This is extremely frustrating to me and makes me angry. What able bodied people can do about it is assume that a disabled person understands what is going on. For me I am trying to work on a way to handle this.
Zack Anner has talked about how mothers that have disabled children fight for their kids, so I am going to say that my mom has always been my best advocate too. She fought for me to have a college education.
The thing I want to talk about is how people talk down to the disabled. This happens twice in the episode. Once where their in a parking lot and people are mocking him and the other time is when JJ enters class.
This has become a big issue for me recently. I was hoping once I graduated from college that I would not have to face this. I was just recently at a disability conference where people taught that I did not know how to read. This is extremely frustrating to me and makes me angry. What able bodied people can do about it is assume that a disabled person understands what is going on. For me I am trying to work on a way to handle this.
Sunday, October 2, 2016
Saturday, October 1, 2016
Welcome
HI guys so its October and that means its time for the 31 for 21. I am participating
this year in a effort to get back into blogging. I have some good ideas for you guys. So please stick around. I am going to try and write Monday though Friday and have either pictures or videos on the weekend. Here is today's picture.
As you can tell from the picture of me and my dad, I do not have DS. I have lots of friends with DS and am working to help brining services for individuals with DS to my area. More on that later this month. I have Cerebral Palsy , World CP Day is coming up October 5th so make sure you come back to see the World CP montage .
Grab This Button
this year in a effort to get back into blogging. I have some good ideas for you guys. So please stick around. I am going to try and write Monday though Friday and have either pictures or videos on the weekend. Here is today's picture.
As you can tell from the picture of me and my dad, I do not have DS. I have lots of friends with DS and am working to help brining services for individuals with DS to my area. More on that later this month. I have Cerebral Palsy , World CP Day is coming up October 5th so make sure you come back to see the World CP montage .
Grab This Button
Tuesday, September 6, 2016
25 Life Lessons that I have learned due to my disability
So today is my 25 birthday. I have been on this earth 25 years! For me 25 seems so old. I mean I remember being a 21 year old and still feeling like a teenager and people in their mid 20s being so old but now the jokes on me because I am 25, a quarter century old.
Over the past 24 years I have learned a thing or two about disabilities. I have had 8,640 days of living with disability. As a result, I have had a unique experience being on this earth. It is different than my parents or any of my siblings. There have been lots of hard days but not all days have been difficult. In fact, there have been many life lessons that I have gained by having a disability.
Here isa my count down list of 25.
25 There will be hard days.
There will be hard days for everyone life is hard at times. Sometimes it will be a hard day due to having a disability and some hard days happen because life is just plan hard.
24 Hard Days do not last forever.
Sometimes in the mist of a bout of very strong OCD I have hard weeks or months. As hard as theres things might seem day after day, there will be a day where it becomes better again.
23 Laughter makes everything better
On those hard days its important to have laughter. A little joke and smile might be all you need to make you feel better. Laughter has been crucial for me because it gives me a small break from my fears and troubles.
22 Never take anything for granted
I know some people out there, I know because unfortunately I have had to deal with them, think that humans beings are naturally able to walk talk and do a verity of things independently and take those things for granted. I do not because I know a lot of people who can not always do these things and they are not broken people.
21 Disabilities are not something to be sorry about
One of the things I hate a lot is when people apologize after I have told them that I have CP. Those people I have found are the nice people who just do not know what to say. There is nothing to be sorry about. I have a good life.
20. Kids are curious about disabilities, so it is important not to dismiss their curiosity.
Both growing up and now as an adult, kids are curious about why I speak differently. I know that it is important to be honest with kids and give them the vocabulary and knowledge to embrace people with disabilities. I am not going to be publishing a book on Cerebral Palsy this year but I am hoping it will be at a later date.
19. Being in the right environment is critical for success.
I have experienced this from jr. high 'til today . When I am in the right environment, I am able to do well and when I am not it is hard for me to meet expectations. It is key that more environments try to accommodate those with disabilities like my Jr College and CSEB did.
18. Words matter.
Despite what the saying, "sticks and stones" says, words can and do hurt. It is important to be respectful to each other. You can do this by ending the R word and listening to minority communities about what words or phrases mean to them.
17. Friendships are critical.
Friendships are important. I did not have a lot of good friends growing up, so I treasure the friendships that I have now. I am friends with my old professors, service providers, and some peers. These relationships are important because they allow me to have experiences outside of my family.
16. Inspiration is not necessarily a good thing.
Being disabled and having disabled friends online has allowed me to understand that Inspo Porn is not always the best way to represent people with disabilities in the media. ( For more click here
15 Ableism is real.
While we learn about a lot of other stuff in school and college we rarely learn about Ableism. I have experienced ableism and it is not fun. It does exist and as a young adult I now have a responsibility to speak against it and make other people aware of its existence.
14. Disabled people have made contributions.
Something else that you do not learn about in school is the story of the disability rights movement. Helen Keller was not the only disabled individual who made a difference to American History. There have be others. These stories need telling. I learned about the 504 protests that happened in SF in the seventies and the Capital crawl to help push through the ADA.
13. Media is slowly changing.
There has never been a better time to be a person with a disability. Shows like Born This Way, Switched at Birth, and Speechless and the modeling industry advocacy organization, Changing The Face of Beauty are showing the world that being disabled is ok. They are doing this by allowing real disabled actors to be portrayed in these roles. This is very exciting.
12. Being Brave is a crucial.
12. Being Brave is a crucial.
Sometimes it is hard to be brave but it is important. When I decided this summer to go back to Speech Therapy at 24 I was being brave and I am seeing the results.
11. Be Assertive
You have to speak up if things are not going right. Back in middle school, I was told to ignore bullies now I know that was wrong information. You have to speak up, not only for yourself but for others coming behind you.
10 People you meet online are not always creepy.
I have met the best people online who are connected to disability. We are truly a global community and are using our voices and life stories to help each other. I am hoping to attend the NDSC conference next June to meet more of these awesome people.
9. No one has a crystal ball.
Though out my life well meaning people have tried to paint a future for me. They said I couldn't go to college or live on my own. This past year I graduated college with a GPA above 3.0. This has proved to me that I make my own future just like my sisters and cousins.
8. Do not assume.
I think humans tend to assume a lot of things about people. I have done this too and feel bad. I know that having an open mind when meeting new people is important.
7. Great expectations.
My parents taught me this one. They never seemed to be bogged down by what professionals said to them. They expect me to be my best. They pushed me to go to college and have advocated for me to have the best life I possibly can. Sometimes when I start listening to nay sayers they are the firsts ones to say no, that I can achieve success in life.
6 Two wheel bikes are overrated
While I can successfully ride a two wheeler on flat lands. I much rather zip around on a three wheel bike. Although it has been broken for a few years. I love that bike a lot.
5. Celebrate the little things
When I am able to do something new. I tense up and get so excited, it is the best feeling because I know how hard I had to work to get there.
4. Community matters.
I have found community in therapy centers, Special Olympics and online. I love making the World CP Montage and mentoring kids with developmental disabilities. The disability community is my tribe. I love being a part of this great community.
3. Hugs are not used enough.
Being involved in the disability community has taught me that hugs are great. It is the best thing that people can do. It feels great and is so easy. I love giving hugs!
2. Sometimes you have to be creative.
This could be called different ways to do things. Recently I have used a nickname for myself and it has worked well.
Inclusion in life is so important. I know I am biased, but I think the best job in the world is advocating for inclusion of people with disabilities!
Thursday, August 4, 2016
Thursday, July 7, 2016
If by chance then do not judge
So, I am in speech therapy again and am working hard and sometimes , ok a lot of the time, I drool. Once while saying the /th/ sound I accidentally sprayed my speech therapist . I got so embarrassed and rushed to apologize . She wasn't mad and said that I couldn't help it.
This week in America two black men were shot by the police. This is not new, but this is the first time I am talking about it. Black lives , not all lives in particular because black lives have been tossed away without public regard for all of America's history mater. They matter because they are people who are a part of families. They matter because the person killed by the police is someone's son, brother, lover, friend. They matter.
One of the reasons that it seems silly to me to judge someone based on a characteristic , such as race, gender, sexual oreantation, religion or ability. Is that these are characteristics that the person themselves has no control over. The individual person does not chose these characteristics yet in America we tend to punish certain groups for a characteristic that they themselves did not have control over. Just like disability, my mixed race identity has contributed to the person that I am. I am a disabled women of color. I knew about slavery before it was taught to us. My mom has stories of the Jim Crow south as do my grandparents. It shapes me into a more conscious person. It is not something I chose, but it has shaped me into the person that I am today.
To judge someone because they are different for whatever reason is wrong. Because it is all by chance. Random Chance. The bad thing is that some people think they are better because of chance. There is one race the human race. We are better together.
Remember the Golden Rule: Treat Others The Same Way You Want to be Treated
My deepest condolences to those that have loss a person to police violence
This week in America two black men were shot by the police. This is not new, but this is the first time I am talking about it. Black lives , not all lives in particular because black lives have been tossed away without public regard for all of America's history mater. They matter because they are people who are a part of families. They matter because the person killed by the police is someone's son, brother, lover, friend. They matter.
One of the reasons that it seems silly to me to judge someone based on a characteristic , such as race, gender, sexual oreantation, religion or ability. Is that these are characteristics that the person themselves has no control over. The individual person does not chose these characteristics yet in America we tend to punish certain groups for a characteristic that they themselves did not have control over. Just like disability, my mixed race identity has contributed to the person that I am. I am a disabled women of color. I knew about slavery before it was taught to us. My mom has stories of the Jim Crow south as do my grandparents. It shapes me into a more conscious person. It is not something I chose, but it has shaped me into the person that I am today.
To judge someone because they are different for whatever reason is wrong. Because it is all by chance. Random Chance. The bad thing is that some people think they are better because of chance. There is one race the human race. We are better together.
Remember the Golden Rule: Treat Others The Same Way You Want to be Treated
My deepest condolences to those that have loss a person to police violence
Thursday, June 23, 2016
Friday, June 10, 2016
Last Final
Just finished my last final of college undergrad. 17 months ago I was told that I could not complete a degree in Liberal Studies at NDNU. Eight years ago I was told that I could not go to college to do behavior problems and I really should work in a back room. But yet tomorrow I will get my BA. Impossible is nothing. Never underestimate anyone. Have high hopes and use inclusion to get there.
6/10/16
6/10/16
Friday, June 3, 2016
Wednesday, June 1, 2016
Legacy
Once upon a time there was a young women who went to a grad fair. Seeing all the graduation ceremonies they left because there were things for other graduations , Black Grad, Asian Grad but no graduations for those with disabilities. Being a disabled advocate she went to the disability program and mentioned it to the staff. The staff liked it so they put it on. Today was that day. It was a fun day. This will be an annual celebration at the school. This is pretty good legacy to leave behind.
For those of you that are worried that this means this graduate will not be included in the traditional ceremony, Don' t worry she will walk across the stage in ten days.
Thursday, May 26, 2016
Happy b day Book girl
Book girl is amazing. She always is looking out for me. She is awesome. Happy b day Book girl Love you lots.
AZ
AZ
Sunday, May 8, 2016
Happy Mothers Day 2016
Hi guys sorry I have been absent. OCD has not been kind to me these past few months and I am graduating and generally really busy. But I wanted to blog for Mothers day.
My mother is the best mom I could ever ask for. She is strong beautiful and wise. There have been many times where I wanted to quit college. After an horrible college experience I did not want to go back to school. My mother was there and was firm in her stance. I would finish college no matter what. I am now graduating with my BA in June.
Whenever I am in one of my ocd meltdowns there is only one person that I want to talk to it is my mom. My mom may not be trained in mental health. She does her best and helps talk me through things. I know its not easy to deal with - for both of us- but she does it well.
For all mothers of disabled kids, and fathers too. Thanks for loving us, helping us,. Thanks for holding us, talking to us, playing and planing. Motherhood is not an easy job for any parent but you do it and we love you for it. For any mother of a disabled kid who thinks that they are not doing enough for their kid. Let me assure you that you are doing the best you can.
And for my mother.
Thanks for everything that you have done for Princess Bookgirl and me. Love you always.
AZ
My mother is the best mom I could ever ask for. She is strong beautiful and wise. There have been many times where I wanted to quit college. After an horrible college experience I did not want to go back to school. My mother was there and was firm in her stance. I would finish college no matter what. I am now graduating with my BA in June.
Whenever I am in one of my ocd meltdowns there is only one person that I want to talk to it is my mom. My mom may not be trained in mental health. She does her best and helps talk me through things. I know its not easy to deal with - for both of us- but she does it well.
For all mothers of disabled kids, and fathers too. Thanks for loving us, helping us,. Thanks for holding us, talking to us, playing and planing. Motherhood is not an easy job for any parent but you do it and we love you for it. For any mother of a disabled kid who thinks that they are not doing enough for their kid. Let me assure you that you are doing the best you can.
And for my mother.
Thanks for everything that you have done for Princess Bookgirl and me. Love you always.
AZ
Friday, March 25, 2016
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 |
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.
Thursday, March 24, 2016
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.
Wednesday, March 23, 2016
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.
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