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
Sunday, May 8, 2016
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.
Tuesday, March 22, 2016
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?
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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.
Monday, March 21, 2016
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.
Friday, March 18, 2016
Cerebral Palsy Party Sorry for the lack activity
I have been busy with finals. Happily that is over and I am on
Tune in next week for
new posts. Have a great weekend.
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