Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, October 16, 2018

Down Syndrome Awareness Month: Update on the adult child

It is a sad fact that I can't follow through with anything. It is amazing to me (and to Dean!) that we
have completed any adoptions because they each require a ton of paperwork and a process that must be followed in a timely manner. I guess, for a time, God had me focused more than I'm able to right now. I still intend to do the breast cancer photos, and have actually spoken with a photographer about doing a specific photo shoot. Now to carve out some time!

In the meantime, it is also Down syndrome awareness month. We have had SO much going on here lately, I thought I'd give you a little update on Angela and all that she's been up to.

A year ago Angela entered a career exploration program with a local agency called Lifeworks. They had a pilot program going called "Small Group" at different locations throughout the metro area. Angela was in a group that was based out of the St. Paul skyway system. The very first day was difficult, though probably more for me and her staff than for her. It started with Metro Mobility dropping her off way too early, so there was no staff to meet her. But when she entered at a building she saw a huge escalator that she remembered from the one visit we made months before. She went up the escalator and found the coffee shop where we had met during that visit. She remembered I told her the job coach's number was in her phone, so Angela called her. All was good, and the job coach met her right away. The next day Angela got very lost, as in 6 blocks away (but still within the skyway system.) She found herself in the Federal Courthouse, found a security guard and told him she was lost. She was quickly reunited with her group. Of course, it was the first time they had lost anyone. Leave it to my kid. UGH!  Within a couple months of starting the program Angela was navigating her way around the whole skyway system independently, and was now acting as the leader when new coworkers started the program. This is something that is difficult for most adults! She was even able to exit the skyway, then take a city bus to a specific location, and sometimes took a couple co-workers with her. She did this successfully, and without knowing she was being shadowed by an employee who was not known to her. ;-)

In July it was time for Angela to find a job but we needed to get her through a major surgery first so opted to wait until the end of September to start interviewing.  She went on a couple of interviews but I didn't really think they were jobs that would actually pan out for her. Then her job coach took her to an interview at McDonalds. I was a little disappointed because I didn't want Angela working in the fast food industry. She is a bit food obsessed and I could just imagine her packing on the pounds! The interview went very well, and the store manager really liked Angela and her enthusiasm! She offered Angela 25 hours a week to start. I was very surprised. A lot of adults in our Down syndrome community are only given a couple of hours every day, some only a couple of hours per week. For many that is all they're able to work and stay on task. I wondered if this was really a good match for Angela, and maybe the bar was set a bit too high? I convinced everyone that 20 hrs a week to start would be better. She is paid minimum wage of $10.25/hr, and after 6 weeks will get a raise, then again at 6 months. This is pretty good for her first job, and on par with what others are getting paid for their first job.

Angela started her job with a job coach going along for the entire shift. The job coach showed Angela each task on her list. After the first day it was evident Angela could handle additional responsibilities, so they added to her list. They only needed to show her a new task once, sometimes twice, and Angela was able to complete them without assistance or reminders. Everyone has been saying how fantastic she's doing and all I can think is, "This is the same person who won't put her laundry away without lots of nagging from me!" At the end of every shift Angela is given $7 in McDonalds credit to buy a meal. The first day she came home with a lot of food. She and I came to an agreement that on Monday I will text her what she can order for the week, so now she's getting lower calorie items. She seems happy with this agreement, and it fits well with her desire to know everything ahead of time, at all times. HA!

Friday last week was the first day she was on her own, without a job coach. Dean and I couldn't resist, so we had lunch at McDonalds.  Angela was working in back when we arrived, but while we were eating she came out front.  That stinker completely ignored! She acted like she didn't see us! When she went in back we heard her announce, "My mom and dad are here!" When she came back out front, she continued to ignore us. LOL The good thing is she stayed on task, doing her job. She collects the trays, washes them, and gets them ready to be used again by putting the paper placemat thingy on, then stacking them behind the counter. She cleans all the tables and the condiment area, makes sure the beverage area is stocked with cups, lids and straws, and that all flat surfaces are cleaned off, straightens all the chairs and tables, empties the trash bins and places new bags, carrying the full bags out to the dumpster. Whenever someone comes in the door Angela greets them like royalty, with a sweep of her arm and, "Welcome to McDonalds Sir/Madam!" She says hello to the little kids, stooping to their level,  and elderly customers as well. Yesterday when I picked her up I asked the manager how things are going. She replied, "Oh my gosh! She makes our customers so happy! She even got a tip today! Everyone adores her." (Who gets a tip at McDonalds???)  The manager told Angela, "When you're done there you can go ahead and clock out." but Angela kept working another 30 minutes because she was enjoying her job.

I cannot begin to tell you how proud I am of Angela. The past year she has matured SO much, it is hard to believe she is the same person. Now she can work on that apartment she's been wanting. She's been on a waiting list for a roommate, and we hope it happens soon so she can fledge from the nest, just like all her older siblings did!

Monday, October 01, 2018

Breast Cancer Awareness 2018

It's been four and a half years since I was diagnosed with breast cancer. It seems like forever ago, and yet it seems like yesterday, all at the same time. Life is good!!! I am approaching the 5 year mark - a very important milestone in the life of a breast cancer patient! At 5 years, I can get life insurance!!! Well, that and statistically one's risk of recurrence decreases significantly.

So far I am still NED = No Evidence of Disease. You see, with breast cancer, there is no such thing as "cancer free", because it takes only ONCE undetectable cell to cross the lymph system, to spread through your body. Instead we are labeled "NED", because there is no detectable cancer found. Last spring I was all freaked out and convinced I had developed lymphoma as a result of chemo. My Oncologist ordered a PET scan, and all was well. That scan made me feel SO much better, knowing there was nothing hiding anywhere. At least nothing any scan could pick up.

So here I am.

I want to go back a bit, and share some things about cancer that I never did before. I don't know if the average person understands how devastating breast cancer can be. This year, after much thought and prayer, I have finally decided to share pictures. Not just pictures of my smiling self, but pictures of the effects of surgery. Yes, I'm going to show you pictures of my breasts, both my old and my new. I don't even remember my old breasts anymore. I don't remember how they felt in my hands or on my body. My new ones don't feel like real breasts. I can feel the implants inside them, and they cause me a few (minor) problems here and there, which I like to make jokes about.

If you are here for the first time, THIS LINK will take you to the post I wrote about the day I was diagnosed. So far in my 51 years, that was the darkest day of my life.