John says Jett was autistic

[bookgirl]

How sad for this child that his NUTBALL parents denied him medication that would nearly alleviate the HELL of a seizure every week. I guess holding onto two soup cans and reciting childhood events over and over until the "pain meter" doesn't register is better than medication that can eliminate torturous seizures and save his life.

I would walk on hot coals to save my kids and these guys do nothing, watch their kid suffer and die.

They DID NOT deny him seizure medication, they treated the medical condition but did not acknowledge the autism. Big difference. Jett's medical history was released at the time of his death. He was on Depokote to help, but even on medication he continued to have seizures.

 

[tinatark]

It wasn't that they denied Jett was autistic during his lifetime, it was that they said his condition was Kawasaki - I can remember newspaper articles and interviews of Kelly Preston blaming household chemicals for it... not that it was any of our business, but if they wanted to share his "condition" they should have been truthful.

There are several celebs with "sick" children - Prince's baby was very ill and died, and I believe one of Sylvestor Stallone's older children has a condition - not disclosed publicly, and that's their choice.

 

[EMom]

Sylvester Stallone and his first wife, Sasha, had two sons. The youngest, Seargeoh (Yes....that's right, not "Sergio.") has autism. They were pretty open about it and Sasha became an activist for the cause. This was back in the very early 80s. (He's about 20 now.) If you said "autistic" back then, people thought you were mispronouncing "artistic." No joke. The Stallones were instrumental, IMHO, in making the public aware of autism.

 

[Mouse House Mama]

Sylvester Stallone and his first wife, Sasha, had two sons. The youngest, Seargeoh (Yes....that's right, not "Sergio.") has autism. They were pretty open about it and Sasha became an activist for the cause. This was back in the very early 80s. (He's about 20 now.) If you said "autistic" back then, people thought you were mispronouncing "artistic." No joke. The Stallones were instrumental, IMHO, in making the public aware of autism.

Yes but that doesn't mean that every celebrity has to be a face for a cause. Not everyone wants to parade their kids for the world. People bash Jenny McCarthy for talking about what worked for her child. Sure it won't work for every Autistic child because no 2 cases are alike. They simply don't know enough about it at this time in history. So she went public and tried to help by doing what she believed and what worked for her child and people still have a problem. I personally would never discuss my children's anything publicly. Our private lives are simply nobody's business. YMMV.

 

[EMom]

Yes but that doesn't mean that every celebrity has to be a face for a cause. Not everyone wants to parade their kids for the world. People bash Jenny McCarthy for talking about what worked for her child. Sure it won't work for every Autistic child because no 2 cases are alike. They simply don't know enough about it at this time in history. So she went public and tried to help by doing what she believed and what worked for her child and people still have a problem. I personally would never discuss my children's anything publicly. Our private lives are simply nobody's business. YMMV.

I agree. I was pointing out that the Stallones had been very public, not private, about their child's struggles with autism. I don't think anyone owes it to the world to make their child a poster child for some cause.

It's off the subject, yet related to our adoption. We dealt with infertility for years. In that time, we were in a support group and held a leadership position there. Our group sponsored national conferences and I spoke at some. I was on TV, etc. I did what I could to bring public awareness, etc. DH and I joked that we were the poster children for infertility. When we decided to adopt, I just wanted to be a mother.

I'd seen what a relative had gone through when they adopted an Asian child. He was obviously adopted, as he was Asian and they were not. Aside from the sometimes rude remarks, even the most well-meaning individuals constantly stopped to ask her questions. "Where did he come from? Was he really an orphan? Did you get to pick him out? Does he know his real parents? How much did it cost to get him?" He might as well have had "ADOPTED BABY" written on his forehead.

After dealing with infertility for so many years, I didn't want to "educate" people any more unless I felt the urge. I didn't want to go to the grocery store and be stopped five times to give details of what I considered to be a private matter. I didn't want my child subject to the questions and (yes) stares and comments of strangers. I'm the sort of person who does NOT handle that well and could not let it roll off my back. We decided that adopting a Caucasian child was best. We weren't going to hide the adoption, but I didn't want it to be the FIRST thing people noticed about my daughter, the way it was about my relative's child. I wanted them to get to know her for herself first, not her as "the adopted child from ______."

It was as simple as wanting to be able to go to the store, park, mall, etc. and just enjoy our time together instead of being asked Jerry Springer-like questions. Because that's what our society had devolved into. Too many people think they have the right to ask ANYTHING and that they deserve an answer. I didn't want my child to be the poster child for adoption. As you get older, it's no fun to have people ask nosey questions about your adoption as if you were an object.

So I completely understand the desire for privacy.

 

[Mouse House Mama]

Emom I can completely understand. People these days say anything to you and don't give it a second thought. We have 4 children and I am now pregnant with our 5th. I can't even begin to tell you the questions that strangers ask me. People don't seem to have any filter. Whatever pops into their head pops out of their mouth. It really is amazing.

 

[DisneyMom81]

Not to sound weird, or go off topic, but I don't know why in the world anyone would want to be famous in the first place. I can remember when my first DD was little (it even happens now everywhere we go) and people would always stop us to tell us how beautiful she was, yada yada yada. Of course, I KNOW my child is the best (LOL), but after a while, it truely got annoying. It was everywhere we went, anything she did. I can't imagine how annoying it is if your famous! And on top of it, having a sick child, and trying to take care of that child in privacy. I feel bad for them.

 

[ez]

I am very open about my sons autism...and when dealing with schools and attending all the iep meeting etc, you kinda start feeling as though your life is an open book. There is one place where I have not been so forthcoming...and that is at the beauty salon. I have had the same hairdresser for over 20 years, and I know she knows something is up with my son but I am always evasive when I am there. That is my one litle bit of pampering I get a couple times a year, and I don't want to talk about autism, therapies, ieps or prognosis. A little off topic but just made me think.....

 

[EMom]

I got a very small taste of "being famous" for a few days and it was unnerving. It only gave me the teeeeeeniest glimpse into what life is like for people who are instantly recognized, but it was enough to give me empathy.

When we adopted DD, we had to stop in Moscow for a few days to get her medical exam and US visa. The actual appointments didn't take long, but there was a fair amount of wait time in between, so we went shopping and sightseeing. There were probably 150 other US families in Moscow over that same time period. We knew how to spot each other.

Without going into detail, there was something about DD that made her stick out like a sore thumb among the adoptees. If someone descibed her to another American couple, that couple could spot our family on the streets of Moscow a mile away. And they did. All they had to be told was, "The father looks like X, the mother looks like Y and the baby looks like Z," and we might as well have had a neon sign blinking above our heads.

Because of the unique circumstances of our adoption, other adopting families wanted to quiz us about all sorts of matters. So there we were, in a city of several million people, walking around and being stopped by perfect strangers who seemed to know EXACTLY who we were and what our story was, while we hadn't a clue who they were. It's very unsettling to be strolling around incredibly crowded streets, minding your own business, and have a family (or two) make a beeline for you only to ask, "You're that family from Texas, aren't you? We've heard all about you." It's even more unsettling to have it happen repeatedly. At first, we thought, "Have we met them somewhere? At the airport maybe?" Then we'd ask and after being told that they had recognized us mainly from the description of our DD, we realized that this is how famous people must feel. THEY walk around doing some ordinary activity, failing to "recognize" the people around them because they do not KNOW them. But those people DO recognize the famous person and sometimes walk right up and start chatting, asking questions or taking pictures.

To put it simply, our anonymity was GONE. We couldn't walk around unrecognized. It was spooky. I was so thankful to get that visa and get out of Moscow, where so many people "knew" us. I had no problem with Moscow, but I didn't like so many people knowing who we were when we hadn't a clue about them.

 

[KirstenB]

I respect the Travolta's right to privacy. But I have huge admiration for Dan Marino, Doug Flutie, Jenny McCarthy, Holly Robinson Peete, and Toni Braxton, all of whom have been huge advocates for autism awareness. Our youngest dd has autism, and I try my best to be open about her condition, and help others through fundraisers, etc.

It is such a misunderstood condition, and I remember how completely isolated I felt when she was first diagnosed. After a few months of praying and crying myself to sleep every night, I decided to try to help others in the same boat to not feel so alone.

Regardless, Jett's death was very tragic, and his family obviously adored him.

 

[shortbun]

I've not read most of this thread but just remember that Lincoln said 'believe none of what you read and only half of what you see.' John Travolta and Kelly Preston seem to be great, loving parents and I can not imagine the pain they have endured.