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Supporting My Daughter With Down Syndrome as She Pursues Her Goals

On Tuesday, my daughter Rachel who has Down syndrome started a new chapter in her life: Project SEARCH. She has spent the last two years as part of the Missouri State University Bear POWER Program, a five-semester post-secondary program for students with intellectual disabilities. Two immediate questions: 1) What happened to her final year of college? 2) What is Project SEARCH?

About midway through her first semester of last year, my readers and friends started asking “What will Rachel do when she is finished?” My response was that I didn’t know because we just had to get through one thing at a time, and I could not think about that yet. Then, COVID hit. I picked up Rachel on March 13 for spring break. We learned fairly early that it would be an extended spring break. So, me being me, I encouraged Rachel to go ahead and apply for Project SEARCH. She agreed this was a good plan. This was our back-up plan. I thought this would surely be over by June in time to go to New York City for her birthday.

I was very wrong.

On-campus college was canceled. We retrieved her personal items from the dorm and started her online experience. I think everyone deserves some grace for the end of the Spring Semester 2020. However, it was also truly clear that this is not a good fit for Rachel. Rachel did fine. Her Bear Ambassadors worked hard to try to support her in her classes, and they pushed through.

But it costs a lot of money for her to attend this program, which was more expensive than regular tuition. We do not feel like the benefit of online classes from our basement or a dorm room is worth it. Rachel needs the socialization and the independent living experience. While we want Rachel to have a college experience, the biggest reason she is in college is to make her more employable. For a hands-on learner who thrives on socialization and people, the school and program just could not deliver.

Over the summer, we waited for information on the fall semester. Rachel took her cue from social media. She told me, “President Smart (Missouri State University President) is very smart. He says we are Bears. We are strong. We are going back. So, it’s OK for me to go back.” Still, we did not have enough information to determine if that was best for Rachel.

In the middle of July more information became available. Rachel was full speed ahead from the start, but Jonathan and I were not so sure. We had concerns about the dorm and her suitemates who we did not know. They could be the most conscientious college students on the planet. They could just as easily be COVID party attendees, and we had no way to know. Her classes had already been changed to half in person and half by Zoom. Then, her advanced public speaking class was changed to completely online. Her internship might be in person, but it might be online. That was no one’s fault. It is just part of the new normal.

Then, Johnson County Project SEARCH emailed that she had been selected as one of the fall participants. Project Search was actually started at Cincinnati Children’s Hospital in 1996, three years before Rachel was born. When Rachel was only an infant, I found an article about the original Project SEARCH program in a ladies magazine. I was so impressed with the idea. I have kept up with the program, and I am a huge fan. It has grown to serve individuals with disabilities internationally. Project SEARCH U.S. has an employment rate of about 75% for all programs meaning that approximately 75% of all those who complete the program have competitive, integrated employment for at least 16 hours per week.

Johnson County Project SEARCH is an adult model that started in 2014. In 2018, they had a 100% success rate in employment for the interns. Some Project SEARCH programs are school-based. Each program has a host job site. Participants are called interns and spend nine months at a host business site completing three unpaid internship rotations designed to teach marketable, transferable work skills. Rachel was invited to be part of the program at the Embassy Suites job site. Her area of emphasis at college is Hospitality.

So now she had a dilemma: Back to college or the Project SEARCH program, and she only had about seven days to decide. Clearly, we had concerns for her safety and health. Rachel doesn’t like to tell people she is sick. While she does pretty well at home and understands that she needs to wear her mask and does a great job with that, at college she has more trouble juggling anything extra. She also had pneumonia when she was 13 and spent 11 days in the hospital. The last five days of her hospital stay, she was fever free but could not get her O2 stats up.

While we could have just told her she couldn’t go back, we knew that if she could come to that decision on her own it would be better. She also has a boyfriend at college who did go back to the program, so we add that to the pro or con list — depending on one’s perspective. We also reminded Rachel that while she is an adult, we are paying for this experience, so we do get to have input.

We talked with Rachel’s primary care doctor and her ear surgeon. We talked with her IDD (Kansas Intellectual and Developmental Disability Waiver) Case Manager. We had a call with the Bear POWER leadership. We learned that with her physician’s letter, she would qualify for a medical leave for one year. Her physicians said they thought it would be safer for her to stay home for the year. Her case manager also expressed concern for her safety and the ability to have appropriate supports in the college setting.

Rachel processed all of this in her central way of dealing with stressful situations: self-talk. We knew she was very stressed about the decision. We tried not to pressure her too much and reminded her that others were also taking a year off. This was a hard concept for her to understand, especially since many of her friends were returning and all of the University’s social media was promoting the “we are Bears, we are strong, we are safe” campaign. She went to lunch with her two besties and tried to process with them.

Then, the night before we really needed to have a decision on Project SEARCH, she said we should do a pros and cons list. We often do this in our decision-making process. When we did this, it was clear that the pros of staying home and doing Project SEARCH outweighed returning to college this year. Though she was sad, she said she should stay home. She sent an email to Project SEARCH accepting her spot and sent an email to Bear POWER requesting information on a medical leave.

It’s been about five weeks since she made that decision. Of course, she was especially sad when her friends started returning to college and really sad when her boyfriend returned. She had a few emotional days. But, as I told Rachel, she is resilient and always finds the positive. We discussed how this was an example of her being a responsible adult and making a good decision. In her words, “It is what I need to do to be an independent woman.”

For this year, she will be a part of Project SEARCH. I dropped her off at the Embassy Suites Tuesday morning. She had a huge smile on her face and was very excited.

We were a little early so we listened to her favorite Christian song, “One Thing Remains” and sang at the top of our lungs before she went in — “Your love never fails, it never gives up, it never runs out on me.” Rachel definitely embraces that philosophy and while there may be bumps on the journey, it will all work out.

Every year on Rachel’s first day of school or work, it is my custom to write Rachel a note. Some would say a book. Along with a Rice Krispy treat, I stuck a note in her lunch bag that she packed the night before that said: “Rachel, Mom and Dad are so proud of you. We are proud of your positive attitude and making responsible choices. You are resilient. You are a hard worker. Project SEARCH is lucky to have you. We can’t wait to watch you SOAR! Love, Mom and Dad.”

COVID can’t stop this girl. She will soar. I have no doubt.

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