A little bit about me

      Today is the best day ever!  No, really I mean it! Anyone who has ever met me knows that I say this all the time! The best part is that I honestly think each new day IS the best day ever and I try to share that with everyone I meet. In this blog, I hope to share my thoughts about life, love, and Down syndrome with all of you. Come on! Let's have the BEST DAY EVER!
     Let me tell you a little about myself. I am a 26-year-old self-advocate with Down syndrome. "What the heck does that mean?", you may be asking. As a self-advocate, I speak up for myself and my needs. I make life decisions for myself. While I talk with my mom about decisions I need to make, I choose where I want to live and work; I choose the people I want to spend time with and about things that affect my life like where to live, who to spend my time with, and what job I have.
     I went to school like everybody else and graduated at the age of 20 with a full high school diploma. That means I took the same classes my brother took. I repeated Pre-K because I was pretty little and needed some extra time to develop. I also repeated the fourth grade. Developmentally, I lagged behind my classmates. I was very much still a little girl and they were becoming ... well, let's just say, they needed to wear bras and I didn't! I learned in the general classroom all the way through school.  I got to go to a private school that didn't take kids with disabilities because my mom was on staff. Mom had been told that I could stay as long as I could keep up with the work without asking anything extra from my teachers. My mom and I worked really hard and I graduated with honors. 
     Life was crazy busy when I was a kid. The first three years of my life were focused on my medical and early developmental needs. I was born 8 1/2 weeks early and had something wrong with just about every part of me! That meant I had a lot of surgeries and life was focused on therapy, therapy, and more therapy.  didn't learn to talk or walk until I was three but I could communicate because my mom taught me SEE sign.  Once I got up on my feet, about the age of 4, I took 3-4 dance classes each week (in a regular studio with my peers) and art classes (love!). Eventually, we added voice lessons and math tutoring to the list. I was also doing physical, occupational, and speech therapy sessions each week.  I stopped physical therapy when I was 13, but I did speech therapy and occupational therapy until I graduated from high school. Why so much therapy? I kept going because I kept growing! I was learning new skills in therapy right up until I graduated. 
     What am I doing now? I work. I absolutely love my jobs! I work at a coffee shop 2 days  per week and I work for our local down syndrome association 2 days per week helping teach a self-advocacy course for young adults with Down syndrome. I went through the class a couple of years ago and was fortunate enough to be asked to come back as a staff member. I also get to go to different business clubs and educational conferences to talk about Down syndrome and inclusion and accessibility in the workplace. I love it when I get to do that!
      I am really proud to say that I also have my own business called Down-Right Perfect Gifts. My mom and I work together to create beautiful jewelry pieces that we sell online and at markets and shows. All of our jewelry is beautiful but I am particularly attached to my "Down-Right Perfect" line and my "Morse Code Jewelry" line. The first one honors people with Down syndrome; the second uses beads to spell out inspirational phrases or words in Morse code. When people come in my booth, the first thing they see is a table set up to teach them about Down syndrome. I also give every customer a rack card that lists facts about people with Down syndrome. My business is really important to me because it is one way I can help teach the world that people with Down syndrome are so very capable and deserve an equal place at the table.
        What is my joy share for today? Today I am so happy to share that the Eliminating Marriage Penalty in Social Security Act (EMPSA) has been introduced to Congress. This act will eliminate the financial penalty that people with disabilities face when they marry. Right now, if two disabled people marry, they lose some of their Supplemental Security Income because the SSI dollars of one spouse count as income against the other spouse. SSI is necessary for people with disabilities because it helps provide some of the financial security that is needed to live independently. People with Down syndrome fall in love just like everyone else in this world. They deserve the freedom to marry without taking a financial penalty.
     Why is this important to me? It's important because I want to get married someday. I want to be able to spend the rest of my life with the man I love. As things stand today, I cannot do that. Even though I work, I cannot fully support myself without my SSI benefits. My prayer is that this bill will pass and become law. If you feel so led, please consider making some phone calls to your senators and representatives and ask for their support for this bill!  I would love to be able to wear that white dress someday!
     It is time for me to go to bed. Thank you so much for spending a little bit of your day with me. I hope it was the BEST DAY EVER! 

Blessings,
Hannah