Wednesday, October 8, 2008

Autism Speaks, Jenny McCarthy, and others, thank you, now let's create a movement towards acceptance...

Having autism in the lime light has raised more money for ASD research and grants along with informing the public of early intervention and detection, however I am not sure the latest news segments about how to cure your child of autism, supports families in the long-run. We all are — "Warrior Families" plugging along trying to provide for our children while parenting them to reach their potential. When faced with autism, parents are given a diagnosis with no cause, cure, or prognosis even though we know through research that intensive, early intervention can often lead to a more inclusive life, we can sometimes get dragged down a path of trying to "cure" our children.

Curing our children with ASD only means we are taking a piece or pieces away from who they are. And what do we expect to replace the characteristics with, a fusion of "popular" people traits? Of course as parents we should help our children grow into adults that can enjoy a meaningful life, but I would never think of curing my four year olds's tantrums, I would work towards making him self-regulate himself. At the same time I think a child who has tantrums will someday be able to speak his or her mind, so I cherish the fact that my child screams when a toy is snatched from him.

However, I do believe we need to emphasize making children with ASD well, whether they suffer from gut issues or seizures, the care children receive should be complete and thorough. Often because an individual with ASD has limited communication or lack of connection to what hurts inside his/her body, doctors misdiagnose or a diagnosis is never made.

I have sat in dozens of doctor offices posing the same question over and over, "how can Tristan develop if he cries all night and has severe abdominal pain?" For the past four years I have been searching for the answer to improve my child's health, not to cure his autism.

Everyone has choices to make when faced with autism and since the research has not caught-up to the rate of autism we, as parents, often are left to blaze ahead without much direction. At the same time I believe as "Warrior Parents" we need to look at all avenues and not focus all our energy on curing our children with autism, instead take small steps towards a productive, meaningful life for our children and our families.


Anonymous said...

I hope this blog doesn't cause confusion between what we want for our children and saying we don't accept them as they are. The majority of parents I've spoken with do not wish to change their child just to change their child nor do they wish to cure them, we love our children's ways and most are looking for a way to help them now so they are able to live independently as adults, when their parents are no longer here or are no longer able to care for them. Who will take care of my son? Who will show him the love and patience we show him on a daily basis? who will understand what his likes and dislikes are? What will his life look like behind the walls of an institution? I think if anyone is looking for a cure, that would be why, so that their children will lead a better life in adulthood. Looking at my 9 year old son now, it would seem apparent that he will never be able to live independently and that is a very sad realization then add to that the types of residential facilities available today, some states have none at all. We do need to work hard by looking at every aspect of our children and help them to help themselves so that they can live better lives as adults...we all do that everyday, but why do we have to stop there? What is that is not successful for our child? Let's say for example that our child was not born with autism, rather it was an environmental or other event or trigger that caused some type of brain damage and/or affected the neurological system, then there might very well be a cure - not for autism - but for whatever damage has occured. I truly believe in my heart that a lot of these children, the 1 in 150, have a disorder that mimics that of autism but is not autism at all. Doctors don't know what else to call it - or if they do, they certainly couldn't call it "mercury poisoning", they can't call it an "environmental poisoning" -as there would be worldwide panic. In closing, we 100% accept our child and wouldn't trade him for all the money in the world, but as a parent, if there is anything else we can do to make his life better, then let's keep pushing for it - I don't care what it's called really, I just want to know he will be "okay" and "safe" and "loved" when we're gone. Tell me again, why should we stop?


Anonymous said...

I don't like Jenny mcCarthy, nor do I need to be 'labeled' by her as a 'warrior mom'.
I cannot cure my son, nor are we ever sure HER son was actually Autistic. There is debate about that.
I am a mom, and do my best for my son.
I don't know what caused my son to be like this. I don't know for sure vaccines did it. He has no gut issues, but certainly is indeed Autistic.
He doesn't live gluten free, casein free, dairy free, pizza free, etc, etc....
I know I walk the same path as someone who has a child who lives that way, who goes to DAN drs, etc, etc....
We should create a movement toward acceptance- this I agree with- BUT,- it's alot of the people - the Jenny mcCarthy worshippers that make this road a difficult one to walk together.