ROBUST discussion

That sounds just right, Daniel. A good book is made by being passionate about a subject and therefore having something to say about it.

Andre Jute wrote: "That sounds just right, Daniel. A good book is made by being passionate about a subject and therefore having something to say about it."

That's so true, Andre. The last 15 years, every day has been educational in raising my youngest daughter.

What got me to consider the book in the first place actually happened in a Wal-Mart last year, when I started my Valinthia series. It was a bad day for my daughter, and I was waiting outside the restrooms while my wife tried to calm her down, as the mob of people quickly overstimulated her. It was time to go home, needed to get her to a point so we could get her to the car amid the waves of people. Some woman heard her while standing in a nearby line, and she told her friend, "If that was my kid, I would be beating her ass if she acted that way."

I wanted to tell her so badly that 99.9% of autistic kids can't connect the punishment to their transgression, even if reprimanded a split second later. That to get the error understood takes an example of calm explaining. Life moves on.

The second level of realization was that woman didn't know the difference between a normal child who's hollering to be bad, and the wail of a terrified autistic soul. I know the tone, inflection and sound like the back of my hand. I can recognize it in other children with the same affliction in a heartbeat, even if I don't know them. So the motivation to help educate the public is there as well, bro. Goodness, I know something like that is long overdue, considering the fact as to how rarely we go out as a family as it is.

Yes, Daniel, that could be a very valuable book. I like that it would be written from an insider's view, not a professional one.

You might consider writing a second book just for children...

Write the book as a set of hints to help the general public understand and not to expose themselves as uncaring and politically incorrect. It's a form of blackmail but it works better than resentment and anger, however justified the latter may be.

Very good advice. Keep it as positive as you can. Perhaps an autobiography of bringing up a child with autism and the struggles of being in public. People are often fascinated with that kind of book...

I watch very little TV, but this year the only program I am likely to watch on a weekly basis is Parenthood.

It is very 'real' in general, and specifically I love the character of Max, a boy with autism. Not sure how 'real' the portrayal is, but I feel his parents' pain when he acts up...

I have a male relative who has triplets, one of whom has autism. His wife, a school teacher who left teaching when the babies were born, worked closely with all the kids helping them get along especially helping the one with autism get along with the others, with her parents, and life in general. She really devoted herself to the kids, but so did my relative. Then one day, poof, she just took off. She had seemed so together, so competent, but then there was a breaking point and she just couldn't do it anymore. My relative now handles everything (except when at work; he has a nanny living in). After his wife left, I told him I was sorry about what she had done. He said -- and I'll always remember this -- that "...it's okay because she left me with the three most precious gifts anyone has ever given me." He's a spectacular father.

Patricia, I so hear you on that. Last time I checked, back in 2008, so my data is old... that 80% of marriages don't survive an autistic child. Before I start that book, I'm going to re-up my old data to more current stats. I'm sure they're near the same range if not worse.

Andre hit the nail on the head. Most certainly there will be a list of expectations. Pointers that are well defined and explained on a level everyone can understand.

The difficulty is getting regular folks to accept it as an 'us' condition, and not a 'them' condition. Autisim isn't a one victim ailment. It also affects parents, that's a given. But it also affects siblings, neighbors and even law enforcement. Very few people know that they can call their local law enforcement and schedule a meeting with the local patrol officers. They bring their child to make introductions. No fingerprints necessary, it't not just for the child's benefit.

Now why would this be important? Imagine a neighbor a few houses down driving by, and they see your autistic child rocking back and forth on a porch while shaking a small piece of rope. To the family, it's their child decompressing from too much input. To the neighbor who might not know the family well, it's a call to 911 because the 'kid' is suffering from a dose of illegal drugs, or abuse, or worse.

Now imagine the police officer who arrives at the door. They can 'know' your child's issues and there is no abuse of any kind, and the officer can politely visit and 'educate' the neightbor to prevent repeat calls... or it could go the other route if the officer doesn't know anything about the family. Mom and dad can be hauled off in cuffs, the child traumatized, and the parents have to fight tooth and nail to get their kid back from Social Services, traumatized for years to come.

Such things have happened, and even worse. If you ever read a headline somewhere saying, "Police arrest mother who walked their child on a leash", I can bet you any amount of money the leash was a 'body harness' to keep their autistic child from running into the flow of traffic, doctor ordered and fit to the child so there is no danger to the momentary restraint of how far the child gets from the parents. And the so-called leash is nowhere near the neck, but centered between the shoulder blades. Just a civilian who spotted them across the street felt it would be wise to be safe rather than sorry and call social services and the police....

If I can possibly prevent one nightmare from happening to a loving, caring family, then I'll consider the book a success.

Maybe those harnesses should include a medical tag like bracelets for diabetics.

I can believe those statistics, Daniel, it must take an awful toll on the family. Just reading your posts here I can see how valuable a book such as you are planning would be. Good luck with it.

My heart goes out to your relative, Patricia. I cannot even imagine how he copes with triplets let alone that one is a child with autism. Very admirable.

My heart also goes out the mother. What a terrible thing it must be for her to live with such a decision.

The social services in the UK are notorious for their failures, and for their overreactions. On one Scottish island they took 45 children into care because, they claimed, the parents had formed a witchcraft coven to abuse the children. Even the most sympathetic psychologists were shaking their heads in disbelief at the stupidity and arrogance of these people, and explaining to them over and over again that of course children will tell them anything they want to hear because they first planted these ideas in the heads of the children. It took the parents years to get their children back, and the hysteric in charge of the operation was never punished but allowed to resign quietly. Of course the children, for whose supposed safety the entire operation was mounted, were damaged for life.

I don't see why 'leashes' are an issue. My sister's two sons were impossible to take to stores because they would dart around, hide and act out.

It would have been MUCH easier to handle them on a leash.

When we brought our baby daughter home from Korea, we took her straight to the doctor to document the fact that she had 'mongolian blue spots' on her back that looked as if we'd beaten her with a stick - perfect stripes. We also got the visiting social worker to take special note of it. Only months before, adoptive parents had been visited by social services because someone had seen their child at the pool with similar 'bruises'. I suppose we should be glad the public cares, but so many children who really are abused seem to slip by without being noticed. Why is that?

I used a leash on my son until he was three or four. I'd always thought I never would, until the day I watched in horror as he (2) ran out of the shopping centre and straight into the carpark. He was too fast for me. Fortunately the car that had to stop was only going slowly.

Daniel, I feel for you and your family. These kids are so misunderstood. Your daughter is blessed to have such supportive parents.

I am mostly a lurker here, but I have to react on this matter.

Daniel and others, thank you for sharing!

My son is diagnosed within the autism spectrum. He doesn't suffer from classic autism, can understand and extend feelings to a good degree, and talks, but mainly functional language (I am hungry, dad please get up, can I watch tv etc.). He goes to a special education school here in Amsterdam, and doing fairly well.

But the whole thing is hard on my wife and myself, and while he is improving in certain areas, some of his problems seem to grow together with his height, weight and physical strength. When he is tuned in to the rest of the world, everything is more or less fine. But when he is in his bubble or short-circuits, it is difficult.

We were a few days in Paris this summer. Walking down the street and something triggered him, and he just ran onto the road before my wife could grab. I managed to go after him and scoop him up before the oncoming traffic, but it was scary. The thing is; those things can go well 95% of the time, and then shit like this happens. I try to keep some perspective, and tell myself that any kid can lose focus and run onto a road, but some days it is hard to convince myself.

Also, his problems have changed our lives drastically. He needs structure and routine, and we try to avoid situations where an overload of stimuli will put him in beserk-mode. That means very little opportunity to do something spontaneously, no cafes or restaurants and a decline in social activities. He won't accept a baby-sitter, so going out together is a problem. Most of the time, I don't mind, since between him and a demanding job, I don't have much energy left. Sometimes, though, it feels claustrophobic. And it is a strain on the relationship.

My main problem with the whole autism-issue is that there is no clear path. For each child the symptoms and problems are different, and they react differently to all kinds of therapy/treatment. Also with Roy, I often think I can predict his behaviour/reaction to certain matters, only to be surprised. Sometimes unpleasantly, sometimes very pleasantly. But the absence of a clear framework of reference points is hard.

And when I see that he wants to make contact with other children, but just stands there and doesn't know what to do, I'm on the verge of tears.

To clarify, I love my son and we have many happy moments together, both as father-son and also as a family. I am sure the problems we face are in many aspects not as different from parents with 'normal' children. But it is still difficult, and that is something which took time for me to acknowledge to myself and others.

Dave, what you describe feels very close to what the triplet in my family experiences. Some moments are wonderful; others quite worrisome. She, too, will run off -- toward danger.

When I was in high school, there were three guys who liked to hang out at my house. They were the three smartest fellows in our school were usually together. However, when they were at my house, one of them would always go off to a distant corner of the very large room and sit by himself, and it was difficult to tell if he was even listening to the conversation the rest of us were having. I've made contact with him in recent years (we have dinner once a year when he's in the area for the holidays). He told me that he learned he had autism. He lives alone with no TV, no newspapers, no radio, no distractions. His work? He does research for NASA. He has found a way to make life work for him. His mother wasn't so lucky. She killed herself when he was a small child and his father was nowhere to be found. He says he made it through childhood with the help of many women who knew his situation and stepped in to help him: teachers, neighbors, and the moms of other kids he knew. He lived with his bewildered grandparents. As an adult he seems to be quite content, certainly successful, and at ease in social situations that demand little from him.

Thanks for sharing your stories, all. I am sure there are websites where you can discuss such things, but putting it out there into the mainstream is very valuable.

Dave, my heart goes out to you and your family.

My grand-niece just had her 10th birthday. She really is a sweet girl and I'm not sure where she fits on the spectrum, probably about where Roy is. Her mother says as her birthday approached, she looked at her daughter one day and it hit her: This kid is cute now and people are pretty amenable to her, but how will they react when she becomes a teenager and her hormones hit? What will I be dealing with when she gets to be 20? 30? Daunting stuff. She lives on the other side of the country and my bro visited them for the birthday celebrations. He has no idea what approach to take with her (and worries about it), but said she came to seem to like him and would every now and again dart out and sit beside him or show him something she had done. Such small things are big for the family.

Patricia, that is a heartening story about your friend. Quite amazing.

A compendium of stories such as you three have shared might go a long way toward people understanding the disease.

As so often happens, I just got notice from Windwalker for a book called, What is Autism

http://amzn.to/OPcXKv

Take care of the You, your children are indeed blessed to have such caring parents.

Patricia wrote: "Dave, what you describe feels very close to what the triplet in my family experiences. Some moments are wonderful; others quite worrisome. She, too, will run off -- toward danger...."

Thank you, Patricia.

I wish Roy would be a NASA-type savant. He is really bad at some things, but very good at others. Sometimes I think it is just a matter of finding the exact right comfort zone and matter of interest for him to blossom. Those are the moments which give a parent strength and hope going forward.

Kudos to your relative, by the way. If my wife would leave me, I don't know how well I would cope. And I certainly wouldn't be so gracious about it.

Sharon wrote: "Thanks for sharing your stories, all. I am sure there are websites where you can discuss such things, but putting it out there into the mainstream is very valuable. ..."

Thanks, Sharon.

Actually, I have been avoiding such websites. I think they would just make me nervous and let me feel guilty about all the things we haven't tried yet.

We have taken a conscious approach to not go crazy and try every thing that is out there and drag him from one therapy to the next. Roy is dealing with a lot as it is. He also needs his time to rest, to just be a boy and do the things he likes. We believe a relaxed and caring, happy environment is also very important. But sometimes we second-guess ourselves, although I'm sure most parents have that once in a while.

I am honestly trying to live from day to day, week to week. If I think about what our situation may be in ten, twenty years from now, I'll likely go crazy... :-)

Thank you all for listening to my ramblings. I guess I had to vent a bit.

Dave wrote: "...We have taken a conscious approach to not go crazy and try every thing that is out there and drag him from one therapy to the next. Roy is dealing with a lot as it is. He also needs his time to rest, to just be a boy and do the things he likes. We believe a relaxed and caring, happy environment is also very important. But sometimes we second-guess ourselves, although I'm sure most parents have that once in a while.

I am honestly trying to live from day to day, week to week. If I think about what our situation may be in ten, twenty years from now, I'll likely go crazy... :-)..."

Vent away anytime... I'm sure that is not something you get to do very often.

It sounds as if you are taking a thoughtful approach to the situation. I know little about it, but it seems just right to me. I wish you well in finding a great fit for him...