Maxim Impact

If you're not able to adopt a child yourself, here's one way you can help. My friend Stephanie Nance is doing a fundraiser to get Maxim home! They are so very close, and yet they are several  thousand dollars short.

Lots of people say, "If you can't afford to adopt how will you afford to raise the child once they're home?" Let me ask you this: How of often do YOU have to come up with a $20,000+ piece of change for your children? Not very often unless they're going off to college or something. It is one thing to be able to afford the day to day living expenses and medical care for a child, but covering the up front  costs of international adoption is very difficult.

There are many of us who've adopted kids with Down syndrome and other special needs who understand how crucial it is to get these kids into families; kids who would otherwise be rotting until their deaths. I've completed two international adoptions. I have friends who have completed that or several more. We all "get" that it doesn't just happen. We didn't just decide one day to adopt then run to our overflowing bank accounts and withdraw the necessary funds. I personally don't know many people who have $20-$30,000 laying around just waiting to be spent!

That is why there are fundraisers like this one, where you can help someone like the Nance family get a child home who has been sitting and waiting far too long! 

Changes and stuff

I know that some of you are thinking I'm going to write about "those" kinds of changes, but I'm not. In fact, "changes" is probably the wrong word. If the title bar had more space I'd probably say something along the lines of "We're doing a bunch of stuff around here and it feels like we're making all kinds of changes and spending lots of money to do them" But no...there isn't that kind of room in the title box.

Last summer Angela was able to get a new waiver that allows us to do some things, and get some things that will not only benefit Angela, but also allow Dean and I to learn some better skills when it comes to dealing with the behavioral issues. Half of her waiver went into effect in July, but the other half had to wait until we had some other testing and documentation done, and it just went into effect April 1st. Then it had to sit on my desk for a couple of weeks (ok, almost 4) while I figured out the budget. Ummm...those who know me also know that "numbers" and "budgets" are against my religion. With everything done, submitted, and approved by the Gods at the county and state level, we're finally able to do some things we've really been wanting to do!

The first priority was getting the back yard fenced. Angela is learning new skills every day, and her favorite one is called "Spying on the neighbors". (Now that spring is here, and the trees are getting their leaves this will be more difficult to do.) Now, Angela isn't the little old lady across the street who peeks out her curtains every time you make a move. No, Angela is the little girl at the top of the hill, standing in the picture window, watching all the neighbors garage doors. You see, an open garage door means the neighbors are HOME, which...in her mind...means they're available to play! Oh, and she doesn't want them to play at our house, because our house is boring. She wants to play at THEIR house. She also wants to see what food and drinks they have in their fridge, and what shows are on their TV. I think I've sufficiently warned all the neighbors, but that doesn't stop Angela from just taking off to go visiting! As always she saves her adventures for when I'm in the shower or otherwise indisposed, which gives her a several minute head start, and me a heart attack when I discover she's gone!

On Thursday the "fence guys" will be here to set the posts for the fence, then they'll come back on Monday or Tuesday to put the actual fence up. Let me just say I CAN NOT WAIT! The basement door will open directly into the fenced area. Angela will be able to go in and out at her will, while the front door will either remain locked, or I'm putting one of those beeper thingies on it so when it opens it'll sound an alarm. Angela doesn't like noises like that so I think she'll leave the door alone. I'm still working on Dean about filling in that *^$# pond though. I don't think he understands the anxiety and stress it causes me in the summertime. When Angela isn't looking like she's going to fall in it, she's throwing all the dog toys, doll strollers, or what landscaping rocks she can lift into the water. The bigger the "Sploosh!" the better, right? UGH! Just the thought of that pond raises my blood pressure. A good thing though, if Angela DID fall in, thanks to all the swimming lessons she had she won't drown. Might hit her head on a rock or 5 THEN get knocked out, but if it were just the water to worry about there wouldn't be an issue.

The next thing on my list is Angela's physical activity for the summer. She's very quickly gaining weight and this is just not ok with me. Half of her stamina issues are because of the rapid weight gain, some of which can't be helped because it's caused by her meds. But, sitting in front of the T.V. all summer won't help either! She'll be swimming 3 mornings per week, and we have a Y membership so she can do stuff there as well, but I don't always want to be inside. So I was on a quest to find her a bike that she can ride. There are several options of adaptive bikes available, but they're extremely expensive (we're talking several THOUSAND dollars!) Also, leave it to my kid, but she has managed to tip over all the adaptive bikes she's ridden. Although I spent several years planning to have Angela do a "Loose Those Training Wheels" bike camp, the reality is, given her weakened left side, she will likely never have the balance needed to ride a two wheeled bike. Then there is the whole issue of TIA's. We know A) she needs a low center of gravity to prevent tippage B) it needs to be VERY easy to pedal, or we might as well not get the darned thing C) She needs support for her back, as her stroke has made her left side weak and it collapses when she's tired. C) it must be three wheeled.

Tonight we were supposed to have track practice, but it was too cold and damp for me to be standing around in the wind (it was a lovely 45 degrees...blech!) so Angela and I headed to Carz Bike Shop which was recommended to me by my friend Kathy. Thanks to the internet, I was pretty sure what we were going to get before we even went to the shop. There are only two distributors of this particular bike, and while Cars Bike Shop isn't exactly close, it's closer than the other one in Rochester!

Anyway, we tried out the bike, a Sun Cycle EZ3, which is a recumbent trike, and it's perfect! They are going to make some minor changes to it for her (and me!), like adding a hand brake for me in the back so I have some control. Toe clips to keep those pesky feet on the pedals. Also, because it's a recumbent, the chain runs along the frame of the bike, right at Angela's inner thigh level, so they're going to make a chain guard for it. They will also change the hand brake levers that aren't waaaaay to big for Angela's tiny hands. Not that I expect her to USE them. LOL

As we were messing around in the parking lot, I began to wonder what the the world Angela has been doing in Adaptive PE in school. I know she's been riding an adaptive bike, but clearly not very much,(and no, I don't expect her to be doing this every day, I just want to be a fly on the wall to see how she does it!) as she's still at the developmental stage where they do nothing but watch their front tire go round! But this bike was light enough for me to EASILY push with one had and walk along side her so she could just practice steering and not worry about pedaling. Within about 1/2 hr she was doing a much better job of looking ahead if I gave her a target to look at.

While there are pictures on the net of the bike, I'm not going to post any until we have it, which will be sometime next week. Angela is VERY excited to get her new bike!

Next up on the agenda? Registration for Camp!

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.