Emotionally, the past few weeks have been stressful. While God is not surprised by any of this, in spite of all my life experiences, I find myself surprised and disappointed. And of all things, I am surprised and disappointed in human behavior. Me, TheSassySouthernGal. I need a perspective check and writing usually helps me with that.
Back before spring break when many of Rachel’s friends, our friends were planning trips to Hawaii, snow skiing, the beach, South Padre Island, and New York City, Rachel sent me a text that said, “Do you have something fun planned for spring break?” I laughed and responded that we’d find some fun things to do. I also told her we had work to do. An advocate’s work is never done.
Rachel loves movies. She hadn’t been to the theater since she went to college, so she saw four movies over spring break. Fortunately for me, her daddy loves to take her to see “How to Train a Dragon 3”, “Captain Marvel”, and “Nancy Drew Mysteries.” But they humored me and we went to the Alamo Drafthouse for a special showing of one of my favorites, “Fried Green Tomatoes.”
Rachel had to see her otologic doctor for a follow-up. Four ear surgeries later, she sees him every four months. All good. She had to see the orthodontist, and we learned again how much Rachel’s’ teeth love her. She had lots of lunches and hang outs with friends. Rachel needed to be loved by friends who understood her over the break, and this momma needed for her to be loved and embraced. We worked with her on reading and a discussion assignment for one class, practiced a speech she was giving at a banquet, and worked on her outline for her next speech in her public speaking class. A lot of things typical friends do over spring break.
And she got to visit with her high school case manager, volleyball coach and friend Ms. Fitz and baby Grace. That always makes for a happy day!
That’s where typical ends. Instead of trips to the beach or snow skiing, Rachel did a little advocacy for people with Down syndrome and other disabilities. On Wednesday, we had a conference call with Senator Moran’s office. She told the staffer that she knew Senator Moran missed her and to tell him hi. Nothing like good self-esteem. She told him about being in college. Then, she told him to say thank you for introducing the ABLE Age Adjustment Act. Finally, she asked him to sponsor the Transformation to Competitive Employment Act (S.260/H.R.873). She let me and a policy expert explain what the bill would do and why it was important. Her part was telling him how she enjoyed her hostess job at the Olive Garden and would return this summer. She added that she liked to work with her friends in her community, and she liked getting paid the same as her friends. She told him that she was able to add some of her earnings to her ABLE Account and used some of it to buy a new computer for college. All made possible by legislation she helped to pass. Good stuff.
She also videotaped thank you messages to both Senator Moran and Senator Roberts for sponsoring the ABLE Age Adjustment Act, and we pushed these out on social media. Check mark. Saying thank you is important.
On her last Saturday of spring break, she had another important meeting. She met our new Representative Sharice Davids. Rachel took her a letter that told her a little about her life. She told her about the Bear POWER program at Missouri State University and working at the Olive Garden. She invited her to come eat there when she is back this summer. She told her she had some bills she hoped she would sponsor. This is the list that was in her letter:
• Empower Care Act (H.R. 1342) – Extends and improves the Money Follows the Person (MFP) Act so people can live in their homes and communities and not facilities
• Transformation to Competitive Employment Act (H.R. 873) – helps people like me have jobs where we get paid like everyone else
• ABLE Age Adjustment Act (H.R. 1814) – would move the age of onset of disability for 26 to 46 for opening ABLE Accounts
Then, she told her that she loved her life and about her friends. She told Rep. Davids that she had a lot of friends who were fans. Rep. Davids and her staff were very engaged, especially for a Saturday morning. Rep. Davids was quite attentive to Rachel and I was impressed by their conversation. Rep. Davids told her that maybe this summer she could meet her friends. She said she would like to hear their thoughts and ideas. Rachel’s face lit up. I imagine she’s thinking dancing and ice cream sundaes. Rachel remembered that Rep. Davids liked to dance so Rep. Davids, her staff and Rachel all danced to a little “Uptown Funk” while dad did a boomerang to push out on social media. Rachel and Rep. Davids Dance
Oh and I almost forgot. Her first day of spring break we went at ate breakfast at the Downtown Diner in Olathe so she could meet her new State Representative Adam Thomas.
That was Rachel’s typical spring break week.
