What is Monica doing on World Down Syndrome Day?
Since we haven’t posted in a while, here are some notes about a typical day with Monica.
After making her bed, Monica donned the crazy socks to start the day – for #WDSD2019.
As on most days, but especially for Lent. Monica and I went to 8:30 mass. After mass, one of the ladies asked us to sign a get-well card for another morning mass-goer. She mentioned that the woman would be so happy that Monica had signed.
Then we went to speech therapy. Monica has continued to improve in her communications. We are so glad we didn’t quit when school ended. She goes to two different therapists as they have different styles and areas of focus. Making conversation with co-workers, writing clear texts, reading stories to nieces and nephews, and chatting on the phone are some of the topics addressed.
After speech, Monica did a few chores at home in between texting some of the family members who had already sent greetings for World Down Syndrome Day.
Several days a week, Monica goes to the Rec Center to get her Mom to do some walking. She loves to enter her membership number to get in and head for the track.
Since Monica had lunch plans for today, she washed her hair and put on the ‘21’ shirt from last year’s Buddy Walk. The Upside of Downs is the group in Cleveland that sponsors the Buddy Walk. It was held at the zoo last year and Monica had a great time. Here she is with a few friends at the 2018 Buddy Walk.
We met a new friend for lunch. Emily also works at the hospital where Monica is employed. She has been there for years, so she can show Monica the ropes. It was nice for the mothers to share a few stories about the joys and challenges of having adult daughters.
Monica loved her job at Progressive Field, and we had just about gotten all the bugs worked out when baseball season ended. We attended a few more job fairs and found a match with Aramark corporation. Aramark provides food and cleaning services to many area hospitals, schools and entertainment venues.
It took a little while for the hospital to find just the right position for Monica as everyone wanted her to be challenged, but we also wanted her to be successful. She is now settling into the routine in the dish room. She is working 5pm to 9:30pm, five day a week.
Monica has a transportation service that takes her to her job since she cannot drive and it would not be practical to take an Uber every day! Because she is employed, she is eligible for some funding for this service through the county.
Monica’s body clock had to make a big shift as she was always an early riser and went to work in the morning in her prior jobs. This was actually a big change for the whole family because Mom and Dad are ready for bed before Monica now! Monica had a job coach for the first few weeks and seemed to know the job. She learned most of the tasks quickly, but some job behaviors had to be reinforced.
Here are some photos of her at her job.
These are a few examples of behaviors we had to address:
- Even though Monica wears hearing aids, she doesn’t always hear well. If an instruction is given to her from behind, she can appear to be ignoring it when she just didn’t hear it.
- A comment that employees may help themselves to a fountain drink wasn’t clear that bottled drinks were off limits.
- Your shift ending at 9:30 doesn’t mean you can just walk out at 9:30 if there is still work to do.
- We still have challenges! It is often nuances in language that aren’t readily understood. She is inclined to say ‘yes’ to an instruction to please the person speaking even when she didn’t understand the instruction. She is not clear on terms of degree like some, or not-too-much. She will think an exception becomes the new rule.
Monica has been working at the hospital now for nearly six months. We are very proud of her. This post is a little idea of what life is like with Monica these days. She is quite clear on being an adult and wanting independence. At the same time, she shows there are areas in which she could not be truly independent and we are happy she is with us.
Monica is a thoughtful, caring, hard working person. On this World Down Syndrome Day, we are counting our blessings.