Charity is for the giver.

I wonder how many people, like myself do not (did not) understand this concept. It's similar to the Christmas saying, "it's better to give than receive". With the exception of going to Sunday school when I was very little cannot say I'm a deeply Christian person. I'd say I'm more agnostic. I really WANT to believe that there is some Divine reason behind all this chaos and human suffering (and that's just my world and not Darfur). So I've got to say personally, when someone would say to me, "it's better to give than receive". I thought they meant giving would make you feel good. You giving of yourself, your resources, your time, would give you an endorphin rush. You felt good for doing good.

Well after my wedding post I began to think of something I learned about two years ago. I don't think that is the true idea behind the concept. Two years ago I had spent some time back in the work force. Dear Hubby had been laid off, and his line of work was scant. To make ends meet I immediately began to look for a job. I found one in my last line of work before I became Autism Mommy 101.

Like I've said before, I'm not deeply Christian but to make ends meet I had to work with a VERY Christian, Very right wing Republican type. I'm talking the kind of Republican who listens to Rush Limbaugh online....DAILY, shudder!

I don't exactly have a ton of time to refine my political views, what with being  super Autism Mommy, but I'd say I lean towards devil worshiping pagan in those types of peoples eyes. I have two kids out of wedlock, do not attend church and believe everyone should have the right to health care, craaazzy tree hugger!

So as you can imagine my manager and got into lots of heated discussions. Believe it or not, I quit and wasn't fired, lol. I would be lying to say that some of the ranting republicans didn't having some interesting points and I'm willing to hear the other side even if I do not always agree with them. I have great respect for the manager in question and though he had many interesting and intelligent ideas. I actually came to like Dave Ramsey.

The funny thing is I can't even remember the topic of discussion that brought up this particular thought from his end. He said to me "charity is for the giver, because that means you are fortunate enough to be able to give". I'd honestly never thought of it in this way until he brought it up.


As far as a family with Autism goes, I think in many ways, we live a very charmed life. Our son on the spectrum talks, has many interests, is potty trained. He has a wonderful chance at living a very full life and with that we are blessed (yep, I said it, even though I'm agnostic). We've been able to secure many grants. Many to pay for his private education and bio-medical therapies. We have wonderful insurance coverage that is currently covering his Applied Behavior Analysis and other medical needs. We still do struggle with everyday bills, lots of Autism related expense's that I cannot begin to factor in but we've always managed to keep a roof over our children's heads.

Our family is extremely lucky that I can pull a sentence or two together. In the very beginning, when our son was first diagnosed, I was filled with raw rage and endless optimism. This potent combination of emotions seemed to pull in the grants and I always thought, "how lucky we are". May be it is the wisdom that comes from being a few years in but I'm sick of asking for help, for NEEDING it! I can no longer (with out being false) convey that cauldron of emotions. I finally understand the meaning of "charity is for the giver".

For our family that would ideally come in a positive long term outcome for both of our children. One not supporting the other, no strain on the "NT" child,  no group homes for the one on the spectrum. I'd love to give one dollar to the store clerk at Publix for premature babies but how can I do that when I struggle to pay the light bill or I'm busy worrying about placement of my adult child into a group home?

 

I think that's another thing that drives me crazy about the wedding. Part of me wants some celebrity to whisk us off and pay for this big grand wedding because we've worked so hard for our child with Autism. So feel free to forward this to Oprah or Jenny McCarthy, or both. Dang it if I don't feel ashamed about that desire. I hate using DS's Autism as a crutch. A part of me thinks we've worked so hard, shouldn't we get something back, something from a larger community that has helped to cause part of DS's Autism. The other part of me, knows that won't happen, part of it because I won't plea for it. I cannot put on a false face of Autism happiness and gratitude of "awareness" even for the wedding of my dreams. The best case scenario would be for us to be able to pay for everything ourselves. To never worry about pitting the cost of our wedding against whatever Autism may cost us, this year and in the years to come.

  

I'm sick of being Autism poor and I want to get married dammit!

Forgive another pop culture reference but I'm a stay at home Autism mommy. My links with the world often start with the prefix www.

So recently the "Five Year Engagement" has come to theaters. I know you are thinking, how this could possibly relate to Autism. I will explain my line of thinking that I've got to "spew". Hubby and I have been engaged for over five years. We've been thinking about getting married for about seven (since before I got pregnant with our first). Our older DS is six years old and has Autism. Do you see the correlation? No, well, we are broke because of Autism. It is not often I stop to tally the cost of what Autism has taken from us; it's just TOO freaking depressing! When it comes to weddings I can't help it, it's rubbed in face on a regular occasion that my children's father and I are not married.

I saw a contest on facebook relating to the aforementioned movie that asked contestants to send in ten "save the dates".

http://offbeatbride.com/2012/04/five-year-engagement-movie

These are the little pre-invites (usually fridge magnets) that people send out months before the actual date of the wedding so that guests can make appropriate preparations for travel and to take time off. Well here is the thing about that; we've never sent any out. I would've liked to enter but I couldn't even bring myself to lie, it's just too sad. We've never sent any because we both knew we had no real chance of getting married (at least in the way we would like too).

Between organic SCD (specific Carbohydrate Diet) cooking for over four years, Tons of trips for Chelation and IVIG, supplements and bio-medical tests, special Autism school tuition and driving to and fro from the school and various therapy appointments, buying a car that can handle all this travel, having the necessity of only one parent working to deal with everything that Autism entails, etc, etc, etc. All these details seem incalculable but what they add up to is that we are BROKE.

Each year we would say, "next year, with our tax return". Over that last four years since DS was diagnosed we've had two years where we got less than half of what we expected to get and two years it got spent on what else, Autism "stuff". It's pretty frustrating uphill battle, but I wouldn't change it. I know we did the right thing for our kid but it would be nice to get something for ourselves. I would like to stop being sneered at by the upper middle class for being the "baby momma".

So this year we sort of did it. After all we've made it through (way more that most married couples could stand). We thought we deserved a proper wedding. We booked a location (which we meticulously researched) and I reserved a dress (which I love). We even put down deposits on both. I personally designed our "save the dates" and invitations. I came up with a color pallet, theme and decided how we want to register (for a few kitchen/household things that we need, activities for the honey moon and some money to go to charity). I drooled over http://offbeatbride.com/ and dreamt of yellow shoes and black eyed Susan’s.

 I want you to understand to, this is no fifty thousand dollar gala either. We live in south Fl., it is pretty expensive to get married here and we are looking to spend less than ten thousand dollars, which is very conservative. We stayed in budget, a small miracle by wedding standards.

Now the tax money is gone (another year where we got less than half) and we can't even afford the "save the dates" off of www.zazzle.com, joy. Well Jason Segel (whom I normally love) screw you. I suppose it will all work out. I've been trying to invoke "The secret" for years, thoughts are things you know. We are rich beyond measure. We just can't write checks to pay for this long awaited dang wedding.  

If I had 10,000,000 what would I do for my kid with Autism

I was watching Fast Five the other night (yes, I'm ashamed but Hubby is a car guy so don't judge me). The premise is that they pull off this big heist and each member of team  would get ten million dollars. Very realistic, I know, because anyone in this economy has ten million dollars, yeah. So of course being a bio-medical Autism mommy where does my brain go? I can tell you it has nothing to do with the latest Luis Vuitton purse or shoes (or insert designer bullshit here)! My first thought is that I would purchase a hyperbaric oxygen chamber for treatment of my son. I'm pretty sure that this is not what most people think, but oh well.  Honestly while watching  Fast Five should any woman be thinking about Autism while looking at Paul Walker, Tyresse and the rock?

What would be the next step after that? I could feel my brain reeling. I realized at this point, I don't know. I can say for sure that we've done many, many, many bio-medical interventions with plenty of success. We have a WONDERFUL DAN (defeat autism now) doctor. The problem is we've done everything I've read about: chelation, IVIG, list's of supplements, very strict SCD (Specific Carbohydrate diet) for almost four years. In all fairness we did just start ABA one year ago, which is the best thing next to chocolate but I still have to wonder what could be the next step? We've been so blessed to be able to get great care but I do wonder what is the amount of money that it takes to REALLY recover a child with Autism. Especially when the child is older than say two? My son is doing awesome compared to where we started when he was two and a half. He had one word then, "jew" which was short for juice (not antisemitic slang) and getting that request was like pulling teeth. He is six now and almost seven and we still struggle with different things but sort of the same things, Autism things.

I remember when we first started this journey one of the books I read was "Starving children with starving brains" by Jaquelyn McCandless. She states in the book that she didn't recover her granddaughter. At the time I thought that was nuts. I believed EVERY child with regressive Autism could be recovered especially by someone who had written a book on the subject.

http://www.amazon.com/Children-Starving-Brains-Treatment-Spectrum/dp/1883647177

At this point I've begun to question that belief. Please don't misunderstand, I don't want advice on what to do. I know there are steps will take to continue my son's journey to recovery. Like I previously stated we have wonderful and capable DAN docs. I've read every book in the library and read every thread online regarding bio-medical treatment. I personally believe bio-medical treatment should be a valid form of treatment for every child on the spectrum (along with many other illnesses) of course that treatment being tailored to the child various needs. I'm very well informed on that front. I'm just wondering, even if this world accepted those ideas as treatment for kids on the Autism Spectrum and everyone had the kind of funding the Fast Five heist could provide, would it be enough?

I hate to start my blog off on this cynical foot but this is MY blog and I want a place to practice radical honesty with the topic closest to my heart, Autism.