On being forged into a warrior mom
If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!
This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.
Some days the HOPEISM in that simply takes my breath away.
March 23, 2011
The Fundraising Blues...
We did organize a special event here and there, and still answered as many e-mails and phone calls as we could. We still share information and attempt to keep our website current...
But as inspirations are supposed to do, they inspire you.
Recently being given "The Jefferson Award for Public Service" for our autism work in our area and our network for Texas -- has indeed been the inspiration needed to continue on in what we do, and to see if perhaps we could do it even better.
We are planning our meetings that will resume in September, we have worked out with Desperate for Respite, for that organization to provide childcare so parents can attend, --- but all that and more requires funding.
Our "Show me the Money" Scholarship Fund has been drained for a couple years now, and oh how I would love to resurrect that committee of community folks to resume awarding funds for parents who need ABA training, parents who need Advocates to attend ARD's with them, students with autism who need to go to social skills camp, - or even for the first time ever, - camp!
And that has me banging my head on my desk while singing the fundraising-idea blues!
I could have my staff research and write grants in attempts to apply for and be awarded money... But no, that won't work. We don't have staff and all our time is spent in trying to keep up with helping parents who need help now and not an answering machine because those organizations who do have staff and money with which to make more money with, are too busy off making that more money!
I could organize a "walk" for Houston, where I brainwash everyone I know to form teams to raise money to cure autism, when it's really mostly for me to send to New York to pay for enormous salaries and offices and travel expenses; and only maybe if anything, return 10% of that back to helping the people, the community, the state where it was raised from.
But no, nope, - can't do that one. Wouldn't do that one! It's already being done by someone else!
Let's see what else I could do...
I could organize an event and bring in an inspirational speaker, charge money to parents of children with autism and disabilities so they could be inspired, because if there ever was a group needing to attend an inspirational event to be inspired, it would be therm, --- to cover the cost of that, and then hope they were so inspired they will give me even more of the money they don't have in the first place because they are parents of children with autism and disabilities and all their spare money goes toward that!
That was one of the better ideas I've had recently. And I knew who I wanted. Marcus Luttrell. My typical son Matt loves him. Marcus is his hero. Marcus Luttrell is the lone survivor of a Navy Seal team mission. He wrote the bestselling book "Lone Survivor" and speaks all across the nation. He's even featured in the video "The Shape I'm In". An awesome inspirational song and video, you really must watch it.
He would have been a great fit. The stress autism parents experience, has been linked to the stress of combat soldiers in war. So who better to speak to warrior parents than a true veteran of war!?
But, when I finally got in touch with his talent agency, I found he was booked for a solid year already!
The guy asked me what I was wanting Marcus for, and when I explained, he said he was also the talent agency for the family the movie "Blind Side" was made about. And that they were available!
Great! Until he told me how much. While choking between the laughter, I thanked him but said on our budget the best I could do was just rent the movie "Blind Side" and sell popcorn for $5 a bucket as a fundraiser! Assuming that is, that there would be people out there who haven't already seen the movie.
So yeah, I'm not getting very far on the whole fundraising thing beyond just saying, "Folks, we need your donations to do what we do...."
Somehow it shouldn't be so hard for a community to understand that...
It definitely shouldn't be that hard for National Autism Organizations to understand that.
That it's not so much about throwing all our money toward the big picture of a cure for tomorrow, that we forget that in the meantime there are people in the little picture who need funding and help to simply survive today.
The Jefferson Award was all about just that. It was about community. It was about helping someone today. About one person doing what they can. About bringing everyone together to pitch in where they can and how they can. And if they don't have time, how they can still be a part of it by giving their money. As little, or as much, as they can. I've had two checks come in this month... They both exemplified just that. One from a company that could give $1000.00. Another from a parent who could only give $35.00. Both made an equal impact on what we do.
Then there's the issue of there being so many organizations that do good, how do you get past competing with them?
That was the basis of making our chapter known as the Houston Autism Disability Network. We are not just one thing, one entity. Even though we are. But rather we are the representation of a community. Of many people and organizations coming together for a common purpose. I would love for our scholarship fund to represent that as well! Funding from all organizations, for the sole purpose of helping the people we all represent.
With our scholarship fund, we have helped other organizations that directly help parents that we are not equipped to help. We gave scholarship funds to Liberty Path for them to use in marriage counseling for parents of children who have autism as one example.
Another example is partnering with organizations like Desperate for Respite. They are willing to provide childcare for our autism/disability meetings -- but again, they need funding to do that as well!
It frustrates me to no end to know that come October, "the" walk event, thousands upon thousands (as compared to the hundreds we are lucky enough to get) of dollars will be raised --- enough money to run each of our local organizations for five years no doubt -- and not any of it will go to directly serving the very people who walked for it. Donated toward it. The very community it was raised from. Heck, the very state it was raised from.
And that's what's got me singing the fundraising blues in wondering when that boomerang is ever going to come back around to the person autism fundraising is supposed to be about.... the person with autism who is here right here, right now, in this state, in this town, in this community. And their family who needs help right here right now.