The Glory Has Departed
Norma Boeckler, Artist in Residence
Bethany Lutheran Church.
Tuesday, April 24, 2012
Dual Post: Autism Awareness Day – Necessary Roughness:
The better half made some comments on Facebook today that I thought needed some syndication. After her comments, I added some of my own.
Today is World Autism Awareness Day as well as Light it Up Blue for Autism Speaks Day. The entire month of April is Autism Awareness month. This all sounds great, right? As the day has gone on, I have grown more angry, frustrated, and sad – the most I have been since April of 2006. Awareness and advocacy are great words, but as CDC released new numbers just days ago, it seems there is NOTHING behind these words. As I sat at advocacy training last week with other parents and professionals, the level of desperation that exuded from these parents and professionals was unbelievable. The fact that ALL of our Ohio legislators were then invited to a cocktail party and approximately 4 or 5 of them even bothered to show up shows a height of APATHY that is extraordinary. The fact that there is no help, no funding, no services, no insurance, and we can’t get more than 4-5 of our legislators to come for free drinks and snacks for 30 minutes to listen to our stories, should tell us all something.
I listen to other autism moms who have had to sue the state in order to get the services they need for their children, the mom in a neighboring school district whose 3.5-year-old’s IEP has just been taken away so the district won’t have to pay for the autism scholarship, the older mom whose 25-year-old is living in a group home and now isn’t sure that the group homes are going to be funded appropriately in Ohio and she can’t DIE because she doesn’t know what will happen to her child. I watch my child take handfuls of pills in the morning and evening and when we go to the doctor, the question is, “What are we missing?” I feel her head press against mine in church and her push my hand over her ear so tightly that it causes pain to my hand and know that she is feeling physical pain from the music and knowing there is nothing I can do to help her. I speak out for her as well as other special needs children and I watch myself get “unfriended” on facebook as these special kids might bother your typical kid from learning.
So instead of just being AWARE, we NEED to take the next step. I don’t know yet what it is, but we have to come up with something more. Something for the 1 in 88 across the nation, the 1 in 32 boys in Utah, the 1 of 2 at the house.
Not that anything needs to be added to the better half’s remarks, but I would like to add that there have been successes here at the house just from watching one kid when she’s healthy or sick, when she’s having a terrible day or a great day at school, etc., that there have been successes in our kid’s IEP (Mom’s a good fighter), that the other day she asked me if I was OK and offered to rub my back when it popped heinously…and if this family can have some level of success just by reacting, how much success can the right company with the right study have?
Surely there has to be people smarter than we are who with the right salary, motivation, etc., can put the two-and-twos together to break the mysteries that are the Autism Spectrum Disorder wide open, if one mom’s vigilance can put a significant dent in a child’s autism.
Think how much money could be made by a company whose customers are no longer forking money out for supplements, occupational therapists, speech therapists, tutors, special education teachers, guardians, homes, etc., etc., etc., and buying their beneficial treatment that works with a demonstrable pathology. The people that find the cure(s) will put Apple and Pfizer to shame, and they would have the undying gratitude of millions. Do it for the money. Do it for the gratitude. Do it because finding answers is what we human beings do. But do it. Please.
'via Blog this'
rlschultz has left a new comment on your post "Dual Post: Autism Awareness Day – Necessary Roughn...":
Thank you for posting this. Our youngest son is Autistic. Our family has been neck deep in this for the past 12 years. I have seen a lot of carpetbaggers come and go, thinking that they can make a quick buck off of the hardship that they families must endure. I call Autism "The Great Equalizer". One benefit that I have received from this is sharp discernment. When I speak to someone about dealing with Autism, I can tell within 30 seconds if they get it or not. Their body language tells it all. My wife and I found this out when we tried to get our son to be enrolled part time at our congregation's Lutheran Elementary School. Only one member of the Board of Education actually listened to us. The rest were empty suits who were fidgeting and glassy eyed during our meetings. My wife now home schools our son because that was the only alternative left. Quite frankly, I think that Autism Awareness Month is a big waste of time. Politicians will only look to the next election. The quality of special education varies between school districts. Some parents just give up because the effort is so overwhelming. Every day can be a challenge and you are always on your toes.
GJ - People may think the Bruce Church comment below is out of place. It is one way he sends me material, but it fits perfectly here. The Church Shrinkers always boast about how much they love Jesus, but they are hot air merchants who diminish what is done for others.
It used to be that a congregation felt they had a special purpose for children and adults who were outside the norms. No longer. They want CPAs and lawyers with two perfect children and a double income. Church Shrinkers always have dollar signs in their eyes.
In congregational work I have had agencies bring people to my church, because of the attitude in the parish. I also have had the privilege of having disabled students in my classes at the college level. One young man took computer science from me, although he was blind, without legs, and left with one arm - from a shooting. His cousin was wheeling him into the crowded classroom, bumping his stumps on every desk-chair. I said, "Don't worry. He's already disabled." He laughed with me. We taught the class to lighten up.
He showed me his video of parachuting from a plane, something I would hesitate to do.
Congregations will open the door to many new experiences if they display the first fruit of the Spirit - love. If they are lacking, it may be the result of no faith.
8. For the nature of faith is that it expects all good from God, and relies only on God. For from this faith man knows God, how he is good and gracious, that by reason of such knowledge his heart becomes so tender and merciful, that he wishes cheerfully to do to every one, as he experiences God has done to him. Therefore he breaks forth with love and serves his neighbor out of his whole heart, with his body and life, with his means and honor, with his soul and spirit, and makes him partaker of all he has, just like God did to him. Therefore he does not look after the healthy, the high, the strong, the rich, the noble, the holy persons, who do not need his care; but he looks after the sick, the weak, the poor, the despised, the sinful people, to whom he can be of benefit, and among whom he can exercise his tender heart, and do to them as God has done to him.
Luther, First Sunday after Trinity