Fundraising — bleh
I am being dragged kicking and screaming toward the conclusion that I have to ask my friends for money for my son. Not like the awesome-but-rather-underfunded $1,000 fundraiser I did last year. Like, $$-per-plate, silent auction, we-need-some-serious-cash fundraiser*.
I hate this idea. For several reasons. First, because the insurance company and the state programs — to whom you and I collectively pay tons of money in order to help out kids like Malachi — really ought to cover our preferred, and scientifically based, methodology. We truly believe it's better than the physical therapy they offer — and even our PTs agree — but it's a long, hard slog to get the peer-reviewed research needed to back that up. We are still fighting that fight, but while we jump through hoops, Malachi cannot go without it.
Second, it's going to be a ton of work and this is exactly what I feared my life would become — all about Malachi and his extraordinary needs. It's been two years now since I've worked and though I'm looking for jobs, I'm painfully aware of how few employers out there will realize that these years are those in which I've acquired a lot of personal growth, not to mention marketable skills. A new study out shows that mothers of children with special needs make an average of HALF what their counterparts with healthy children do. That despite the fact that special needs children have expensive needs. Judging by recent court awards, special needs children cost $3 million extra to raise, not to mention lost productivity when they become adults.
Third, I've always been very conservative with money and have managed to keep my family's head above water over the past two years with only one income and some support from parental figures. I hate that I can't "make it" on my own anymore, having depleted our savings and trimmed every expense I can think of.
But, fourth, I also feel like if I ask friends for donations, my budget is suddenly under public scrutiny. If I post on Facebook that I'm enjoying a relaxing weekend at a cabin in a resort area of the state, will I need to stipulate that the cabin is a friend's and through carpooling and food sharing, the entire weekend cost me just $30? If Matt and I manage to finally take a vacation somewhere sunny, will people think we took their money and spent it on ourselves? What about when our car finally kicks the bucket and we're forced to buy a new one? Will we ever get to have nice things again without feeling guilty or beholden?
So while I'm sorting through all these emotional issues, the fact remains that I need thousands of dollars for Malachi's medical expenses. This will probably mean a fundraiser at some point this summer and I'll need all the help I can get.
Anyone out there with advice or a willingness to take on a piece of our fundraiser is more than welcome to contact me!
* I should give a shout-out here to the kids at David Douglas High School, who have adopted Malachi as their Sparrow. Sparrow Clubs are an awesome program linking socially conscious high schoolers with needy kids in their communities. The high school is raising some unspecified amount money for him, we'll find out how much in mid-May, but we have had little to no involvement in the process. This is wonderful from the point of view of my schedule but it's also why I nearly forgot to mention them!
GAWD. Do not feel bad doing what you have to do for your child. We don't fund raise--my husband is adamantly against it--but we receive "help" from many family members.ReplyDelete
I, too, am frustrated that the things that help the most aren't covered by insurance. The things I do for Charlie are actually FAR CHEAPER than traditional therapy--if they would just let parents pick one or the other--they could save money and make their customers happy.
I know, right? I mean, I know why they do it. Obviously you wouldn't want people wasting their insurance money on snake oil treatments, but I also wish things that were legitimate had a way to get fast-tracked. ABM not only costs less than conventional treatments now but it's so much more effective meaning it will cost so much less over Malachi's lifetime! I don't understand why even conventional medicine doesn't put all its firepower into the early years instead of later when the brain connections have already failed to be made.Delete
I will help! I'm good with most things online related and I do love to plan a good party. :)ReplyDelete
I will take you up on that, Cherie!! That would be amazing!Delete
I organized a fundraiser for a family with two special needs kids and raised $7000 in just under 4 hours. We had a yard sale/bake sale. We did it in the spring when everyone was full swing into spring cleaning and more than happy to bring all of their "salvation army" bags to my house. We posted some well designed fliers all over town and got a free public service announcement on the radio. We had donations come in from all over town once people found out what was going on and the yard sale was a huge success. We got permission to use a parking lot on a busy corner and had volunteers to help price and sell. We also made sure that every single person who happened by knew that it was a fundraiser and many kind people paid more than the asking price on things. Hope everything goes well!ReplyDelete
WOW! That's a great idea! Right now we were sort of angling toward "backyard BBQ" w/ raffle. But our local twins group has a ton of experience with yard-sale type stuff, maybe I should ask them for support! Thanks for the idea!Delete
I went to David Douglas! That's the best school ever. I'm so glad the kids picked your awesome boy. I'm sorry that you have to face this decision: receive financial help for boy and never have financial privacy again or get no help and your son suffers. That's horrid. I will wait with anticipation for what you decide to do and will help in every way I can!ReplyDelete
Thanks, Traci! Maybe you can even come down for our event so we can finally meet! I feel like I know you so well already!Delete
You make some really good points about fundraising. It seems like people are so overwhelmed with all the charity requests nowadays, we don't answer our phones or read the "junk mail." But Malachi has a real need, and you need to publicize it. You say you need "thousands of dollars." How long will those dollars fit the need? Will this need be on-going? If it will be on-going, is it better to announce it now so that it doesn't look like you've "found a way to make a living" with future fundraising? Gee, maybe you don't know how long you're going to need to pursue this for Malachi? Dunno, but it seems like honesty about what you might need in future may be best declared asap.ReplyDelete
Yeah, I deleted mention from earlier versions of this post of a specific amount because I really don't know how much is needed and because there is a range. If I put out what I consider to be a "minimum" for the next year of his therapy, does that mean I will only get to offer my son the minimum? I don't want to "milk it," but I don't want to pass up opportunities either.Delete
I agree that it needs a measure of transparency. *I* know that I'm disciplined and honest enough to make sure every penny goes toward Malachi's medical expenses, but I need a way to make that clear to everyone else.
I want to help who knows maybe I can go up there for the eventReplyDelete
Nice! That would be cool! Let's talk more on Facebook about what you think you could do.Delete
It's also possible that you feel uncomfortable fundraising because it is spectacularly inappropriate. Your son is not going to die without this treatment. You've managed to pay for the ABM treatment so far. You've managed to negotiate discounts from ABM treatment providers thus far. You haven't worked in 2 years, but have indicated your are amenable to returning to the workplace.ReplyDelete
Have you considered getting a part-time job? Has your husband considered picking up some overtime? Perhaps you could move to a cheaper house or apartment and use the savings to pay for ABM treatment? When your car dies, buy a cheap used car instead of a sparkly new one? Until you have exhausted the reasonable rationale options, it is incredibly tacky to have a fundraiser.
And yes, if you do throw yourself a fundraiser, your friends/donors will totally be entitled to question why you shook them down for $$ you "desperately" needed for unapproved ABM therapy for your child... but somehow manage to come up with the cash for desperately needed "necessities" like a weekend at a fancy cabin or a trip to sunny Jamaica??
PS The peer-reviewed standard is an EXCELLENT and very reasonable one. A standard in place for a really good reason!! No one's (to date) bothered to do the straightforward legwork to publish a peer-reviewed study?? Has it occurred to you to wonder why?? Especially since it'd presumably be in the interest of the ABM providers, as becoming eligible for reimbursement by insurance would presumably be good for their bottom line. Perhaps it is because the ABM technique won't pass muster?? Or is there another, better reason why a therapy protocol that has been around for 20+ years hasn't even tried??
Well hello! You must have been talking to the critical person in my head, or at least you are channeling her.Delete
I have made ALL these arguments to myself.
What constitutes need? Who is deserving and what do they deserve? I don't have an answer to that.
And already without even actually asking for donations I'm in the position of having to defend my budget from you, someone who won't even give their name and I probably don't even know. (I'm not going to right now, but I have to say your characterizations are uninformed and way out of proportion!)
Maybe it's not worth it. Maybe we should all just stand on our own two feet and never ask for help. If this is the cards that life dealt us, and the money that we have to deal with it, then that's that.
But then I think: Gosh, what a sad world would that be to live in?
I just had to comment ANONYMOUSLY to the first comment.Delete
Are you a mother? A father? Do you have a child with special needs? How dare you use that tone to a mother who is just trying to do the best for her child as we all would. I would kill for my child to get the best care and would do anything possible to help my child and I know Shasta would too. And just for the record, I don't know Shasta or her sons but only know of her and I would be honored to help her along her fundraising journey.
If you want to take on something of this magnitude with your time, try to do some positive with it.
I completely understand why you would feel this.I've been following your blog for a bit. My husband and I run marathons and we always raise money whenever we run. We are planning our marathon schedule for the next six months. We'd love to run for your son. Contact me if you're interested. www.themommypsychologist.comReplyDelete
Wow, that anonymous comment is nasty. Try again, anon, but with your name this time and in your nice voice, k?ReplyDelete
Maybe if you're worried about the money/integrity issue you could ask a third party to manage a special bank account for you? (Believe me when I tell you I am not the right person to do this, but you must have a number geek in your crowd...) I think the bank can help you with the logistics of setting up an account that other people can deposit directly into, but only one or two people an withdraw from? Anyway, I think keeping your fundraising $$ separate from your personal finances would feel better to you and also to any cautious potential donors.
Yes, I agree about a separate account. In prep for the Kickstarter, I started a new account at my credit union but again, it's just up to people to believe and trust me. I asked them about special donation accounts but they said it's only for a short duration and it's just so that other people can deposit into it by using a name and not an account number. Since Kickstarter (via Amazon) already has a way to collect money I didn't think that was needed.Delete
And yeah. That anonymous comment was definitely a factor in why I dragged my feet on the fundraiser.
Oh, hey, I just clicked over here and only just realized this post is like 2 months old (and that's like a gajillion in blog years, right?). So, of course, you have this figured out already :)Delete