Blogging about life and raising our five kids with Down syndrome.

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

Monday, November 12, 2007

Creative Income

Some people need to find "creative financing" in order to make big purchases...like a mortgage. I, on the other hand, needed to find "creative income" in order to survive.

When Angela's dad and I separated, I was working full-time as a sign language interpreter in the educational system. I had 3 kids with me, and while things were tight, they were manageable. Then two years later the boys decided to move to their dads, and Angela and I decided to move to Eagan and start our new together with Dean. We moved September 1st. On September 6th Angela and I were on a bike ride with her new "kanga bike". She was loving this, and laughing hysterically when suddenly the ground came rushing at us and we landed in tangled mess. Angela landed with her belly making a loud "SLAP" noise on the pavement. I picked her up, brushed her off, and saw she only had some minor scrapes on her palms but was otherwise ok.

Later that night as I was helping her get her PJ's on I noticed her old Nissen scar was bulging. It was just a tiny bulge, but I knew from Angela's history with wounds that this seemingly small thing could snowball right before my eyes. The next morning I brought her into her surgeon who said, "Really, I think it's ok. Yes, there's a tiny hernia there, but I'm not touching it unless it becomes infected or something, and that's pretty unlikely."

"You do realize this is Angela you're talking about. The child who is world renown medical rule-breaker?" I asked. He laughed. I said, "See you in 2 weeks. I know we'll be back here around that time."

Days later the "small hernia" was fire red and she was burning up. She was admitted to the hospital for the first of many stays. Finally Anagela went into the hospital the first week of November, and stayed until the end of February. During that time she had 3 major surgeries and had an open surgical wound about 6 inches long on her belly. It was not a good year! I would sleep at the hospital in Angela's room, then in the morning use the parent showers to get ready for work. The commute to Chaska wasn't too bad since I was going the opposite way from the rest of the world. After work I'd stop home, grab a new change of clothes for the next day, then head back to the hospital.

Angela got very sick. She had an old surgical scar that deteriorated, requiring numerous surgeries, and a winter of IV antibiotics in the hospital. It was really tough to work during that time. My position wasn't one that was easily filled by a sub, even on the rare occasions one was available.

There came a day, sometime around the beginning of January, when I realized I just couldn't DO this anymore. Her dad had only been to the hospital once to give me a break. He stayed overnight, but spent the next day complaining how he didn't get any sleep there. (Gee..really? You mean it's hot like a Hilton?) There were a few times Angela was able to come home, but within a couple of days she'd be back into the hospital via the ER needed to go back on IV antibiotics. With my sick days long gone, my employer was getting impatient, I was exhausted and desperate to find some type of solution. Finally I called the MN state dept. of human services. "Surely there is some type if funding....somewhere...that allows a parent to be a paid caregiver?"

Whatdaya know!? You bet there was! A rarely access funding source called a Consumer Support Grant. It took a month to figure out the particulars and get the REAMS of paperwork filled out. Finally on February 15th I went on Family Medical Leave, and became a stay at home mom, able to spend my whole day at the hospital helping Angela get better so she could come home.

The end of the month Angela DID come home, but it would be a long time before she could go back to school. She still had a large open wound that required frequent dressing changes. Well, that and the fact she was just plain exhausted. Instead she received Homebound Services (where a teacher comes to the home) which she wasn't exactly thrilled with. Finally the last 6 weeks of the school year she was able to go back 1/2 days. Now she was in a new school with kids she had never yet, but she thrived on it.

That was 3 years ago. Angela is still not able to attend school full-time. Medically she's much better, but physically she is easily drained, and by 1:30 is asleep in a beanbag chair. So she comes home, (but never sleeps of course). Angela was recently placed on a TBI (Traumatic Brain Injury) waiver that still allows me to be a paid caregiver, but with a wage we can actually live on.

Over the years I've learned a lot about funding sources in Minnesota, and I can tell you as long as Angela is under age 21, we'll not be leaving the state! There are just too many funding sources available here that you can't find anywhere else in the nation. You can't just GET them, as they each have their own qualification requirements, but if your child qualifies they can be the difference between having a roof over your head!

If you're in Minnesota and looking for "creative income" sources, you might want to take a look here and see if your child or your family qualifies for any of these programs.

2 comments:

Tom said...

Wow, that's quite a story! Thanks so much for the lead on resources; we are just starting to feel the pinch, but know there is a lot more to come.

Really appreciate it.

Alyssa said...

Right on sister!!! I wouldn't leave MN either!!