Life in a family of nine neurodiverse individuals: How we do it, why we do what we do, helping you do it too. "What lies behind us and what lies before us are small matters, compared to what lies within us." - Oliver Wendall Holmes
Thursday, June 24, 2010
Money Talks - Mine Says, "Goodbye!"
We all know the economy sucks right now. What some people may not understand is how very, very much that sucks for parents of special needs kids. Cutbacks in programs, downsizing at workplaces, government trying to NOT live in its means, us required to, equipment price hikes, repair price hikes, and less coverage due to the aforementioned cutbacks in programs... let's face it, it hurts!
This is not going to be political, but it is going to be a bit of a rant. Well, maybe a little political because I believe our government is going the wrong direction to stop the crisis. See, if I write more checks, it doesn't reduce my debt. Maybe I'm thick, but I don't "get" how that works for government any differently than for me!
Son 3 has been attending summer camp since he was only 6, starting with Courage Daycamps that the school paid for as ESY (Extended School Year) since they had no summer program themselves. Well, the daycamp in our area was shut down due to lack of staff and extent of disabilities participating. The physical disabilities just required more attention than the limited staff could supply, so this area was shut down. Understandable, but suck-ish.
The first year of no daycamp, we invented, "Camp Hotvedt", in which Mom was director and counselor. We fished, cleaned fish, had campfires, tie-dyed t-shirts, made sand candles, window reflectors, went to the beach, built a solar oven from a pizza box (message if you want directions), and spent time enjoying the great outdoors. It was great. All the kids and I loved it, and we still do it every summer.
However, the 2nd year of no daycamp, we realized that son3 needed more time with his AAC device, and we enrolled him in AAC Camp at Camp Courage. He had a blast!! Ok, it cost $260, but it was well worth it (even though we kinda ate a lot of Ramen Noodles while he was gone). A very worthwhile experience, and much needed. Acceptance, pride in accomplishment, and a dvd of the camp play put on entirely with the kids' AAC's.
Last summer, the campership covered everything, except application fee and gas to get him there. Again, it was tight, but we made it. Son 1 was going to college, and so there were several trips to Nebraska, as well. All in all, again, very worthwhile. We love Camp Courage, we love Doane College.
This year, the campership covers $840 of the fee, but leaves me $360 to pay out of pocket. I don't have it. I'm trying to make arrangements, but honestly, with son1 having been home for over a year with no job, it's killing me. We are going down. I've been looking for a job, but they aren't there for the hours I'm available. My dear hubby won't have me working when he's home, as we need to keep our relationship together, too, and we both are so involved with the kids and their issues and treatments, we barely get an hour awake together in the evening. I'm also limited by the four-day schoolweek here. I need to be here for the kids, well, one of us does, and let's face it, his earning potential is higher than mine at the moment.
It's driving me nuts. Juggling the bills, paying out damn near $350/wk for groceries...everything costs more, which means every cent of disposable income we used to have is now invested in the every day items we need. I haven't even bought light bulbs in over a month, because it would have to come out of the grocery money that is barely sufficient as is. Add to that Minnesota's requirement that kids over the age of 16 be listed on your insurance whether they have permits or not, and OUCH!! Sometimes, you just feel like giving up, surrendering the battle, and letting the creditors come.
I'm sure camp will give us either time or a bigger campership. But I know they're having a hard time, because donations are down because the economy sucks!!! Every time I read a poll asking what the biggest problem facing the nation is, I want to scream. Because the biggest problem facing ME, is the economy, stupid. I also have to find a way to pay for repairs to the AAC which needs it's hard drive re-imaged...adjustments to the wheelchair...various therapies, and other things for the kids. College fees, assistive technology, and then school clothes. May God have mercy.
Postscripted update: Camp is, indeed, giving us the full scholarship. So that's one worry down. Now to find gas & food on the road money...
I'm a mother of seven, ages 22 to 6. They all have special needs of one variety or another, hence my interest in parent advocacy.
Despite special needs, every child has their own needs, and all children have some things in common. You will find here rants, raves, excitement, tears... things all parents go through. You will also find acronyms that special needs parents know, as do the professionals that work with our children. My hope and my goal is to provide experience, strength, and hope, as well to learn from comments and receive your experience strength and hope.
I don't have all the answers, but between us, we can find them!