Tuesday, April 29, 2014

Negative Nellie

I'm in a negative Nellie kind of mood! (If you are not an autism family, please read to the end to see my I am "thankful" part).
I hate that every other childhood disease is covered by insurance, but none of them are at the numbers of autism and 1 in 68 children, age 12 and older.
I am tired that my life revolves around timers. I hate that every 8 hours I have to give Austin medicine and supplements to keep him maintaining. I hate that families like mine have to fight for everything we need to be covered by health insurance, Regional Center, and the school district. I hate that what is covered still costs me over $400 a month out of pocket for just compounded medicines (medicines made with out food allergens) and supplements, not including allergy friendly foods that cost double if not triple what the rest of you pay. (Example you buy pretzels and can buy on sale for $2.00 a pound, I pay $6 for 1/2 pound)
I HATE THAT 18 MONTHS AGO, OUR LOCAL CHILDREN'S HOSPITAL COULD NOT DEAL WITH MY KIDS HEALTH ISSUES FOR 6 WEEKS and that every time the word autism comes up, TRY TO SAY THAT IS JUST PART OF AUTISM. (I AM CALLING BULL SHIT ON THIS ONE)
I hate that the school personnel has to be in that close of contact with my non verbal child that they have to call me on every little thing. THAT NEVER HAPPENS WITH A GENERAL ED KID!!
I hate what autism has cost my older children and their quality of life. I hate 10 years of explaining that "no we can't afford that" because of autism.
I hate having to explaining to my older son, why he should ask if he qualifies for the family medical leave act because I will need help next week at a dentist appointment for Austin. I hope we can get the baby tooth pulled with our further stressing Austin's system with having to be put him under to pull a baby tooth that has not fallen out and is blocking an adult tooth. I hate that when Austin has a normal fever of 99.5, the health tech feels the need to call me.
I hate that I have a $193.44 lab bill for me that I will have to file an appeal for, because every moment I take away for my health means I am not learning or helping another family.
I LOVE that there were parents before me that came out and spoke up to help families like mine.(Please tag any that I miss).
I am happy we have a quality of life to "MAINTAIN: and are not back 10 years ago with no sleep, not potty trained and so many other things that would freak the general public out.
I have such an easier life because of parents who decided they would not keep quiet, who decided helping other families like mine was more important then the cost to their own families!
I am asking again if you do not live my life if you could consider giving at least $5 to help families like mine, change is happening, health is happening, but it does not happen with out you and your donation. We are $260 from competing our goal. ‪#‎HelpUsBeTheChange‬.
Can't help financially? Post our link and tell how our family has directly helped your family and ask your friends and family to help us meet our goal.