State: CA
Country: USA
Member since: Dec 29, 2007
Last logged in: Dec 01, 2008
I am the dad of my 4 y/o daughter Liv. She was dx in August of 07. Liv is my only child. If you stop by my page leave me a post below. God Speed to you all.
I am in my mid 30's recently divorced (unrelated to autism & pre-regression). Liv & I enjoy the outdoors as much as possible. This summer I hope to take her camping with me. BTW, I am the worst speller of all time please take a laugh at how I spell ;)
Favorite Compositions (0)
KevinLivsDad's Compositions
by KevinLivsDad on 03.26.08 - public - 197 visits
This video is really the closest ones to illustrating to some degree what is like to parent an ASD child. I used this video to communicate to my boss what it is like. He had know idea. I shared it with my friends & it really gave them a glimpse into autism. Maybe you can use the video to make a point to some people who just don't get it. http://www.autismspeaks.org/media/d_200603_EveryDay16x9_512k.wmv
Comments(11)
shannonj
Posted on Thu, 27 Mar 2008
I think that bringing awareness to autism and its challenges, and accepting our children with autism are actually two very different conversations. In my opinion, the AutismSpeaks video has the purpose of bringing light to the challenges that many families face as they raise their children with autism. Because autism is a spectrum, of course the video doesn't represent every child/every situation/every scenario. What it does is highlight the severity of autism that some children have and how it impacts the family. Awareness like this is critical for many reasons. One: autism needs funding. It is a disorder that is exploding and the need to fund research is huge. I'm not just talking about research to find a cure (which can be a sensitive subject) but research to help these children get the best education, find the best tools for assisting in communication, and recognize biomedical issues that can contribute to their symptoms etc...Two: many children with autism continue to have challenging behaviors their entire lives. If families want to keep their children at home, to raise their children themselves, then they are going to need support--and lots of it. I can speak from experience that if I didn't have in-home support staff to help with my son, I would have a very difficult time caring for him myself. He is not, and has never been, an easy, passive child. Now, at 13, he has strength and speed that can be dangerous if not thoroughly monitored. But, regardless, I want him in my home, in this family. And if sharing uncomfortable videos brings awareness to the sheer exhaustion and overwhelming responsibility of raising these children, then I support it. For those families who don't have children with the same challenges, it might be easier to talk about "acceptance". But in my reality, discussions have to be more complex than that......On the other hand, autism (with all the challenges it has brought with it) has been a blessing to me. It has taught me to love and accept in a way I never knew I was capable of......and in that way, awareness and acceptance are not mutually exclusive at all.
mommyof3gr8boys
Posted on Wed, 26 Mar 2008
LivsDad, I think it is commendable that you shared the video PLEASE dont get my comment wrong. Everyone needs to see something different to understand Autism as MercuryMom stated. However, my issue was with the statement that if you accept autism as a different way of being you dont understand autism. That is the comment I had issue with. I dont think that is true. I did not like the video personally. It was one of the first videos I watched after my sons dx and i was like OMG this is my life. It was right on, but then I thought, is this how I (me personally not the entire community) should be portraying my son? For me its a NO. I in no way shape or form meant to imply that anyone did not care for their child at all. That is absurd. It is very obvious that everyone here cares deeply for their children or they would not be here. I just think that as much attention is put on the negative aspect of autism just as much should be put on the positive. And no mater how sever your child is there is always a positive. So to Mecruy mom, i think we will just have to agree to disagree, I do however, hope that you don't think that all people who want acceptance for their children rather than a cure are deluded or don't understand enough about autism or experience hardships like those who choose to fight for a cure. And if people were rude to you then they were in the wrong too regardless of their stance on the issue!
mercurymom
Posted on Wed, 26 Mar 2008
Like you I try very hard to be careful what I say..that's why for the most part I only post short stories from my journey with my kids..and keep the rest to myself. If I was offensive in my remarks, I did not mean to be..I was simply talking about what happened in my life with the video. Several neuro-diverse groups have spoken out about the negative side of the video, two members contacted me after reading a new story I wrote about how real this is for many of us. These same people had said that I do not love or except my childern for who they are, or I would never put them in therapy or "program" them to be more normal. They were up-set and mad at Autism Speaks and called the video staged. Yes, it was filmed for hours on end, then edited to reflect what the film maker and the producers wanted to get across in a few minutes. If that is 'stage' most all films we watch are, including the evening news... For me this video was a breath of fresh air in a world where people who have not lived this, tell me that autism is "just a different way of being" as if there are no hardships in being autistic. Big difference between quirky but blending into society, and what we see on the video. Still everyone walks their own journey and every reacts in his or her own way to autism and how it effects the lives of their loved ones. Hats off to you Livsdad...I too know about fishing a child out of the water...in December in a swimming pool...a story for another day... Blessings...Cheryl :)
KevinLivsDad
Posted on Wed, 26 Mar 2008
I don't find anybody's comments offensive below. Nothing was in bad taste, malicious, or ill will intended. It is just peoples opinions, thoughts, & free expressions. I encourage that in all facets of my life, I think that is the intent of foggy rock too? However, I did find myself going over my comment three times to make sure there was nothing to hurt anybody's feelings.
KevinLivsDad
Posted on Wed, 26 Mar 2008
You know there where some of the "negatives" depicted. But, what it did depict is the hardships families go through. Including mine.. Yes the video is a large part of my families life. And, yes everyday I must be positive but everyday has exceptional challenges just like depicted in the video. A lot of people think you just have another "quirky kid" when the read the sanitized hallmark symptoms of autism in the cookie cutter descriptions of autism or if you try to explain it. What they don't know about is the sleepless nights, tantrums, wig-outs, & disfuction of a lot of our kids have. They just don't get it. This video made it click for people who just don't get it. A lot of these same people have only seen Liv in her routine or at her best behavior. They don't get it that my child has to be watched like a hawk. They don't get it that one time I turned my head & she went running into a lake with her clothes on. I had to wade into the lake to my knees with my clothes on to stop her from going deeper & the lake drop off just a few feet in front of her.
4muskateers
Posted on Wed, 26 Mar 2008
Sometimes it is hard to sit by and watch videos like this one...but for oh so many families this is how they really live...I have been blessed by knowing three beautiful children who are even harder to deal with than what was shown on this video. I have even had the pleasure of traveling to Florida with one family...Boy I really got a good glimps of autism then...see I have not met another child like Julian, and people who meet us think that autism isn't so bad. Julian is a child who never fit into the autism arena. If it weren't for his lack of speech, people would never know he was having issues with the vaccine injury and the now re-gressive autism. Sometimes as I have tried to help families with the resource group I have, I have to be very careful not to make them feel like bad parents, or uneducated parents, because they all look at Julian and want their child who is autistic to be more like him...It's hard for me too, because I have no clue how to help minimize their pain...then you have us who wish Julian was higher functioning academically...I didin't care for the video when it first came out, just because it only showed one side...but it is this side of autism that has been able to help others understand, and help fund the research. I am just waiting for someone to make a video on children like Julian who because of their personalities fall through the cracks. But this doesn't mean I will pray for one more than the other...it does not mean one family has more hardships than the other...and it does not mean that one child deserves more attention than the other...each child and family is as UNIQUE AS THEIR FINGER PRINTS and that is what makes us all be able to share, compare and accepts and become friends and supporters of each other. Yes we live with autism, but not one of can say we really understand...because your shoes do not fit me, and my shoes do not fit you...so lets be glad for people who can share their expirences and bring awareness to the forefront...and for those of us who want to join the war and fight AUTSIM...I say lets march on.
mommyof3gr8boys
Posted on Wed, 26 Mar 2008
I was not going to comment on this video because it wasnt for me. I was interested in what people were saying about it however, so i decided to read the comments. I wish I hadent. Comments like the last one are EXACTLY why i wrote the post about leaving foggy rock. I dont think its fair to bash ANYONE even if they dont agree with you. I would consider myself in the as your called it Nureo diverse group. I didnt agree with the video, YES, this is my life too. But i think you can raise awareness in other ways besides the negative all the time. Maybe you got bashed because of comments like the one you made! you said if people who think autism is just another way of being had to live this for a week they might get it. I have to live this everyday of my life, I get it!!!! i find the comment rude
mercurymom
Posted on Wed, 26 Mar 2008
I passed that out left and right when it first came out..and got bashed by many in the 'neuro-diversity' group for it's 'staged' only showing the bad. HA! for about 5 years of my life EVERYDAY was an endless run of hardship..that was reality..for me. I wish more people who think autism is just another way of being had to live this for a week..then they might get it...Thanks for posting this..I often forget new to autism people have not got all the resources I have. I needed the knock on the head :) MM
AWETISM
Posted on Wed, 26 Mar 2008
I feel like a few of the families on the video. Running after my son , the hair is real bad for us.
shannonj
Posted on Wed, 26 Mar 2008
I've seen that before, but was just as moved watching it again tonight. I could add some of my own home movies to that segment! It is a great awareness tool....Thanks for sharing it.
