Lawmakers Look into Federal Response to Rising Rates of Autism | C-SPAN
Hi there ! You may think you know me as the 47 % of Americans who rely on the government to sustain my life. Who uses food stamps and medicaid on a daily basis. Some may even judge me as while I use such services , I drive a Toyota Prius and have a I phone You see from outside sources It looks like I am playing the system . But I am here to set the record straight! I know these people that you think I am . I watched as a mom bragged to me that she didn't have a job and that food stamps covered her Kerig coffee cups and that she didn't want to make an appointment until after noon cause they don't get up until then. However I am not that girl. I am in no way a saint, but I worked hard , graduated at the top of my class , chose a career and up until 8 months ago made a humble but sustainable living at a job I truly loved! But at the end of the week you worked 50 hours and after paying for your special needs sons medical bills and childcare for which is only used 4 hours a day but you have to pay for full day and you have absolutely nothing to show for your paycheck it can become very daunting You see while solely running the whole business end of a dental practice and having my phone beside me making sure my son received all his medicines , ate the correct diet, got taken to the bathroom every 30 min, got to his 2 therapies on time , called insurances companies , made endless doctors appointments there was no sanity , no Jenny and most of all no paycheck . I couldn't handle it anymore ! So I quit my job that I loved to care for my son which is even more of a full time job than running the practice. I already purchased my car and my husband works at sprint and got a deal on my phone so that's where that comes from . So please stop and think before you get offended at me . Walk in my shoes for a day ! I Listened to the governments hearing on the epidemic of autism. 1 in 88 kids are now diagnosed with ASD disorders. My son is 1 in 88! Treatments that are not a cure but can help ease the symptoms that Ethan faces daily cost $64000 a year ! Our insurance covers $34000 a year . This is the cost for only one of Ethan's therapies and my salary for a year . My now stay at home mom career which is a silly term considering I am never at home is a 24 hour job. Ethan participates in 2-3 therapies a day I drive 80 miles a day to get him to and from his therapies, I change up to 7 dirty pants a day , up until this week cooked a gfcf diet for him , I keep running records of his therapies to turn into state agencies and insurance companies and on top of that am making regular appointments for the whole family. I can now see why I have been so very stressed and run down. As my job in the dental field , I can see fruits of my labor. As our practice grew and patients came in and out happy ,I received praise for my job from my boss, I received a paycheck in all these ways I was rewarded and felt valued. Well what if in your job you worked 24/7, you didn't receive a paycheck and you put your heart and soul into making your job grow and prosper and you were actually losing money, your boss never thanked you and you saw your efforts failing daily. That is how I feel . Lets say your job was to potty train a child and it was a year later and you are still changing 7 poopy pants a day would you feel valued ? If you paid all this money and time and efforts for your child and after a 3 years your child can't say your name , melts down at the drop of a hat , can't be left alone for a second .I think it is harder now that my 3 year old can do so many things her brother can't . It was one thing when she was a baby and Ethan was ahead of her , but when she can sing songs, and feed herself and tell me her needs and wants and make friends and use the bathroom independently it can be easy to give myself a pitty party. My job as Ethan's mom no doubt has meaning and purpose but can sometimes be extremely overwhelming. We did not asked to be a 1 in 88 parent. We don't know the cause of this condition or how to fix it . We are a family who does there best with the gifts God gives us . We love help when it comes our way but don't expect or rely on it. My husband works and goes to school full time to give our family the hope of a better future. Number one reason to go to school and get a college education.... you never know if you will be a parent of a child with ASD. No one owes us anything not even the government but if there are services which can help families in need I will consider myself lucky to receive them and be blessed by the programs as long as they are offered. But please don't assume we live high off the hog as Medicaid while they covered Ethan's speech and Ot and his dental surgery doesn't cover his behavior therapy which is the $64000 said earlier, and since Ethan is now deemed disabled we no longer qualify for food stamps so we can chose between food for the family or Ethan's therapy bills. Yes these therapies are expensive but you can't put a price tag on your son starting to communicate using a picture system, or looking you in the eye , or peeing on the toilet the first time . Government doesn't owe us anything, and as much as I would love to think so , God doesn't owe me anything either. So in this life I hope that as a human race we can find the source of this awful disease and help our precious kids to live to a great potential , I hope we can learn to love each other and care for each other cause if earth was heaven we wouldn't need God . God has set the bar on how to love one another and help us through our lives cause each of us have our own autism our own hurt . So please think before you judge lest you be judged and let us pray that God shows truth and light on the autism community whether it be through us individually or through our government.
