Got Warned by Police for Child Endangerment

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Rather, it was my wife who got warned by the police for child endangerment but it should have been me. But it doesn't matter as complacent mistakes made by me in split seconds could have costed my daughter her life. As some of you know, I have a 11 year old daughter who is autistic.. A week ago, while we were going out for dinner. She suddenly shook off her nanny at the front door and ran off down a flight of stairs. As I was carrying a lot of stuff, I let my wife and nanny ran after her. Stupidly, I did not tell my wife that she was running the wrong flight of stairs. My wife told me to meet them downstairs in the car.

About 10 minutes later, I received a frantic call from my wife that our daughter was missing. She had alerted the staff at our residential development who then mounted a search. I found our nanny and found it very difficult to understand her as she was Indonesian and spoke little Chinese or English. Anyway, she told me that our daughter ran into the large car park on the first floor. We searched large car park and podium and also the stairways from the top 48th floor downwards. Our apartment was on the 8th floor and all the time, I was quite confident that we would find her. It is very late when I started to panic when I realized that there was a real possibility that she might have left the residential compound.

It was then that I received a call from the police. They had picked her up from a highway many minutes earlier following a report by a coach driver. They brought her to our apartment and asked my wife to examine her to make sure she was unharmed. At the same time, they issued a warning to my wife saying that she would be charged the next time a similar incident occurred.

However, our ordeal was not to end. The very next week, she sneaked into the kitchen while we were not looking and swallowed half a bottle of paracetamol. We took her to the hospital straight away and she was put under observation for 6 hours. The resident doctor calculated that she had swallowed half the toxic dosage for paracetamol.

Right now, our concern is that we have completely lost control of the situation and that we could no longer look after her safely. We are looking at the possibility of putting her into a boarding school for children with special needs but that is a big decision. I was in charge of safety of the laboratory that housed the biggest collection of SARS viruses in the world. I knew everything about safety management, assessment and contingency planning and obviously I failed miserably at home.

Obviously we have a child with special needs with increased risks. But I would urge all those with young children or pets to be extra vigilant. You should assess the risks at home and also your procedure when you go out. If they do get lost, you should have a clear idea in your mind what to do. One thing we did not have were name labels on her clothes that could have identified her easily. Another thing we are going to look into is the possibility of tracking her through GPS but this is easier said than done here.
  • Profile picture of the author seasoned
    Originally Posted by oneonesip View Post

    is this in US government?
    Derek probably did better than some would BUT, as I recall, he is in china.

    Steve
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  • Profile picture of the author seasoned
    Derek,

    Yeah, you should make sure you have a tag with the name and address. OUTSIDE the clothes for TWO reasons....

    1. So it is more noticable.
    2. Because it may otherwise irritate her, and she may remove it.

    I'm glad to hear she is "ok". Can she talk at all? If so, maybe she could learn enough to at least help get her back home.

    Steve
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  • Profile picture of the author Rick B
    I have a neighbor and friend who adopted an autistic child. They should get a free pass into heaven for that! It's a every single minute of the day job keeping an eye on the kid. I certainly sympathize with you. It's a job raising such a child and even a very attentive parent could easily lose control from time-to-time. I can't even imagine the psychological challenge of deciding whether it's better to keep your daughter at home and have to be the absolutely PERFECT parent or to place her somewhere designed for total safety.

    Best wishes to you and I hope everything turns out for the best!
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    • Profile picture of the author Kay King
      Derek -

      You didn't fail - you were human and you can only do so much. What is important now is to assess where the child will be safest.

      It's a difficult decision but you are committed to family and I'm sure you'll make the right choice. Trust yourself.
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  • Profile picture of the author HeySal
    I'm sorry to hear this, Derek. Nobody can control someone else 24/7 without putting them behind bars. It's a shame that people are victimized for trying their hardest instead of helped out with the work cut out for them. I hope you find a solution that works for the whole family.
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    Sal
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  • Profile picture of the author thunderbird
    Otherwise, how is your daughter doing, Derek -- is she making progress?
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  • Profile picture of the author derekwong28
    Thanks for your best wishes. Definitely, I think her bright red clothes helped on that day. It was after seven in the evening.

    She can talk but only when she wants something. You cannot communicate with her in any way. There was no way she could have told the police who she was and where she lived. Her intellectual abilities have actually dropped quite badly in the past few years. She was originally assessed as mildly impaired but is now medially impaired. But the really bad problems are behavioral in nature.

    This has probably got something to do with the onset of menstruation and also the fact she has grown so much that she has become more and more difficult to handle. She has lots of behavioral problems among which are

    1. Tantrums – many of which are unexplained and seem to be made worse by drugs.
    2. Attacking behavior – she enjoys attacking us and others suddenly with scratches, kicks and pulling of hair. My wife has got scars all over her face and hands as a result. The policeman who picked her up got a lot of bleeding scars on his hands.
    3. Throwing things – this mainly concerns dining bowls and plates with food. In fact, we have to restrain her and feed her every time we go out to a restaurant.
    4. Uncontrolled urination ?incontinence – we are not sure whether this is done on purpose or not. We have had days when she has urinated more than 10 times in places other than the toilet.

    Following a recent assessment, we were given a recommendation that she be placed in a special school with 5 day a week boarding. The reason was that the school would have more experience in dealing with and correcting behavioral problems. However, we are a but skeptical about that given that everything recommended to us by experts did not seem to help her. However, that was before these two life-threatening incidences happened.

    So the immediate question for us is whether we have to send her to a boarding school straight away or whether we can afford to wait another year or two and decide then.
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    • Profile picture of the author Kay King
      A friend in Florida faced a similar problem. Her sons aggression increased sharply as he reached puberty.

      They were reluctant to place him in a care facility. His parents tried every doctor and every diet or med or natural remedy recommended and hoped for miracles. What finally got to them was a doctor who told them their son wasn't "sick" - he was autistic.

      It reached a point by age 13 where he was out of control and the attacks on his parents became dangerous as he was getting bigger and stronger all the time. He also "escaped" several times which put him iat risk.

      After placement in a special school he stopped getting worse and the level of aggression decreased. The doctor told them this happened because the school setting is predictable and scheduled which takes some of the anxiety away for an autistic child.

      It's a hard road for parents and for their children. You know your child as well as you will be able to know her - trust your instincts.

      kay
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  • Profile picture of the author Sheryl Polomka
    Oh gosh, you are not endangering your daughter, and I certainly would not say you have failed. Being a parent is the hardest job in the world and a parent of a child with special needs even harder.

    You are doing your best, so first and foremost you should know that you are a good parent and all your decisions are based on what is best for your child.

    Children run away, even children without special needs can run away. And even children without special needs can get into medication, when my son was younger he drank waterbed conditioner and spent the day in hospital. These things to happen, none of us are perfect and it is very difficult to watch someone 24/7.

    I would hate to make the decision of boarding school, but I can certainly see the benefits, including that it will give you and your wife some respite too. But it is a hard decision and unfortunately we can't give you the answer. Is it something that you can try for a while, and bring her home if you aren't happy with it?
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  • Profile picture of the author HeySal
    Derek - get her to a naturopath and find out if any of her problems are nutritional. Deficiencies of Vit D3 worsen conditions such as hers - other things, too. Find out what they have to offer and try them out. You don't have anything to lose and much to gain if the condition is deteriorating due to a deficiency of some sort. I'd also say put her on a strictly organic diet, but I'm not sure if your food over there is laced with chemicals like ours is here or not. You'd know more about that one.

    Good luck to you.
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    • Profile picture of the author pcalvert
      Originally Posted by HeySal View Post

      Deficiencies of Vit D3 worsen conditions such as hers - other things, too.
      Derek,

      I strongly recommend exploring the possibility that vitamin D supplementation may be helpful for your daughter.

      See:
      Autism [and Vitamin D] - Patient friendly summary
      Update on autism and vitamin D

      Phil
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  • Profile picture of the author Sue McDonald
    I saw yesterday they are now giving autistic children an intense special learning course and the success rate is between 60-70%. The course lasts for 2 years. I also think that diet is very important with these children. You certainly have not failed as parents.
    Keep up the good work.
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  • Profile picture of the author Patrician
    Wow Derek. Sorry to hear that things have progressed for the worse.

    I think you should consider your other child, your wife and yourself. You all deserve to have a life and in fact the way your autistic daughter is always the center of attention could well have deep ramifications for the other child.

    In a way it is a blessing now that you are forced to take an objective look at the situation and BELIEVE that a school would be better for your daughter as well. She needs and deserves professional care. You are doing the best you can but it is not working anymore.

    Sure they will never love her like you do, but she will still have the love of her family and be able to be with them - maybe even real 'quality time' on weekends.

    I have been forced to make a decision like this with my son - who is not disabled but who was very stubborn and refused to allow me to control him (when he reached puberty) - (by hindsight 'normal' brat things - and kid 'trouble' - but I just couldn't handle it). I was being mean to him in retaliation and using verbal abuse just like my mother did to me. I felt I was abusing him.

    I had no choice but to have him made a ward of the court and have the state declare him 'beyond parental control' so that they would help me - and they did, to the tune of $3000 a month for a group home where he was for a couple years - STELLAR!

    ...and he went on to put himself through college and graduated (thanks to having a (professional) 'dad' and being brothers with 4 other kids from 'troubled homes') ... And most of all because I didn't have to be the policeman. I am just his friend.

    It was the best decision I ever made for him. But one he will never forgive me for no matter how many times I explain to him the reason people have parents. Even though when he was 19 I said - see Sean can you imagine being responsible for another human being @ your age? Well that's how old I was and alone with him by 21. But no capiche - I am heartless...

    Anyway I think you should remove the guilt from your mind - kids don't come with instructions - you are doing the very best you can. The very best you can do right now is to get professional help. Why wait for something to happen again? It might not turn out ok.

    in my humble opinion...
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  • Profile picture of the author seasoned
    Some autistics that can speak SWEAR by Omega 3! They ALSO may swear by a gluten free diet. MANY autistic problems like you state are apparently created by ALERGIES. That is one reason why so many have alergies and PROBABLY why a lot of nerds are depicted as having alergies. AS can make one act similar to a nerd, and is a type of autism.

    Patrician makes a good point about puberty, but....

    I came up with a theory that in part explains things....

    2yo --- When neurons are apparently first pruned. Some claim autism starts here. I say that this is when CDD rears its ugly head! Childhood disintegrative disorder - Wikipedia, the free encyclopedia NOT autism, but SEEMS like it.

    6yo --- Apparently when social problems start showing up. Autistics might start to get frustrated.

    8yo --- Apparently the SECOND time the neurons are pruned, and also could be the start of puberty. Autistics might feel MORE frustration.

    13yo --- Apparently ANOTHER time things get pruned, and around the age of adolescence. AGAIN, autistics might get more frustration.

    ALSO adolescence might be HYPER sensitive to touch, pressure, lights, and sounds. They may notice things YOU don't.

    So a problem around 6-8 could be social or puberty, who knows? Of course, if she can't talk, it makes detecting the problems more difficult.

    Steve
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  • Profile picture of the author derekwong28
    I have seen our psychologist and he also recommended that she be placed in a boarding school as soon as possible. The big problem for us is that there are very few choices available. The only school that has an immediate place available looked rather run down to us. Moreover, its headmaster was forced to resign recently after he was exposed as having been convicted of child molesting a couple of decades back. The alternative is to wait for a place at another school but that will take 1-2 years.

    In the meantime, we will admit her to hospital after the Chinese New Year. This would be for observation and will allow doctors to adjust any drug treatment more accurately. There are also occupational therapists, clinical psychologists and psychiatric nurses who made be able to help.

    We have tried Chinese medicine, mercury detox, and many other types of treatment without any tangible effect. Quite often, she would improve for a while but then relapse with a vengeance. The bit problem is that she can't tell us what exactly she feels. The thing about treatment of autism is that if you don't see marked improvement before 5 years of age, the chances are that you won't get much later on. I do not know of any autistic children who were in the same class as our daughter who had been cured. I do not know of any either who has deteriorated as badly as our daughter.

    Thanks Pat for letting me know about your son. The difference with us is that once our daughter is institutionalized, she is unlikely to be able to get out again. But right now, it is looking that we will have to commit here sooner or later.

    Derek
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    • Profile picture of the author thunderbird
      Originally Posted by derekwong28 View Post

      I have seen our psychologist and he also recommended that she be placed in a boarding school as soon as possible. The big problem for us is that there are very few choices available. The only school that has an immediate place available looked rather run down to us. Moreover, its headmaster was forced to resign recently after he was exposed as having been convicted of child molesting a couple of decades back. The alternative is to wait for a place at another school but that will take 1-2 years.

      In the meantime, we will admit her to hospital after the Chinese New Year. This would be for observation and will allow doctors to adjust any drug treatment more accurately. There are also occupational therapists, clinical psychologists and psychiatric nurses who made be able to help.

      We have tried Chinese medicine, mercury detox, and many other types of treatment without any tangible effect. Quite often, she would improve for a while but then relapse with a vengeance. The bit problem is that she can't tell us what exactly she feels. The thing about treatment of autism is that if you don't see marked improvement before 5 years of age, the chances are that you won't get much later on. I do not know of any autistic children who were in the same class as our daughter who had been cured. I do not know of any either who has deteriorated as badly as our daughter.

      Thanks Pat for letting me know about your son. The difference with us is that once our daughter is institutionalized, she is unlikely to be able to get out again. But right now, it is looking that we will have to commit here sooner or later.

      Derek
      You wrote, "Quite often, she would improve for a while but then relapse with a vengeance." Why would she improve for a while? I've heard of that kind of thing happening with some kinds of ailments. Treatment alleviates problems, then problems come back, sometimes worse than before.

      I can't imagine the stress and anguish you're experiencing over what's happening to your daughter, but hope for the best for all of you.
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    • Profile picture of the author seasoned
      Originally Posted by derekwong28 View Post

      The thing about treatment of autism is that if you don't see marked improvement before 5 years of age, the chances are that you won't get much later on.
      Who knows?


      Steve
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      • Profile picture of the author Patrician
        Originally Posted by seasoned View Post

        This story was really inspiring. It could be valuable to someone trying to unravel the puzzle with no clue. To hear it 'out of the mouth of babes' - and one who is possibly living in the same state as others like her.

        she has determined it is "sensory overload' - now that makes sense.

        she realizes 'they are trying to get away from it' - that makes sense.

        now how to reverse it = give them a way to communicate

        this may be exactly the CRUX of what their families WANT them to do...

        (and this will be a first that what the kid WANTS the parents WANT)

        type if you can see this.

        the machine age keeps getting better!!!

        holy technology!
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  • Profile picture of the author Patrician
    Derek - I have to admit this is scary. "The difference with us is that once our daughter is institutionalized, she is unlikely to be able to get out again."

    Now that would stop me in my tracks unless she became violent toward herself or others. In other words, no choice in the matter.

    There has to be something in between! What if she improved and the improvement was measurable and sustained? They would hold her prisoner?

    My sister adopted a boy from USSR who seemed very normal as a 2 year old - very cute - maybe just a bit behind in development - but who wouldn't be, staying in a crib for 2 years with little socialization or affection.

    After going through lengthy process to get him to the US, it wasn't long before it become apparent that he has profound brain damage because his birth mother was a heroin addict while pregnant.

    ... and at 5 they discovered he had blocked hearing which they had repaired, but too late to stop the bad speech impediment. So nothing psychological or mystical like autism may or may not be - He has physiological brain damage.

    He has been very violent and cost her and her husband thousands and thousands of dollars for special schools (which he is always thrown out of eventually). At this point he is 16 with the mentality of an 8-10 year old.

    He seems just fine and seems normal and then all of a sudden he will attack one of them with a fork at dinner, etc. (and now he is very tall - but so is her husband thank God).

    It is like some kind of a lesion that compels (misfires) in his brain to do this as an uncontrollable impulse. But she would sooner go to worse hell than ever put him in an institution. I think this would be the case even if he actually injured them - somebody else - she may have no choice someday.

    She has only been able to keep this up because they have teams of 'helpers' that come to her home to stay and work with him for days at a time (home school). They actually bought the house next door to theirs so that they have a place for the counselors to live when they come to spend time with Ricky.

    What about something like that? Or even "group homes" for disabled children there in Hong Kong? With group homes, at least here, both parents are licensed family counselors and they have no other job outside the home - their job is the kids and being full time 'parents'.

    How about hiring a trained nurse to be her companion 24/7 or even just 8 hours per day so that she can be watched all the time?

    I hope you will find a way - man, I sure don't envy the position you are in. I will pray for you.
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  • Profile picture of the author HKSEO Jonbones
    Sounds like it's time to hire a new nanny. You pay her to do a job that she did not do.
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  • Profile picture of the author waterotter
    Derek, does your daughter have an iPad? If you do a Google search for "iPad helps children with autism" or "how does the iPad help children with autism", there are many reports and success stories of autistic children whom have greatly benefited using an iPad.

    For severely autistic people, communication is often impossible, leaving them unable to convey what they want or need. But as Lesley Stahl reports, touch-screen apps designed for tablet computers like the iPad are now giving autistic people new ways to express themselves, some for the first time. Teachers and parents are hailing the technology as a breakthrough, one that can reveal the true depth of knowledge and emotion trapped behind a wall of silence.
    Source: Apps for Autism: Communicating on the iPad


    Program, iPad help 3-year-old to communicate and share

    iPad App helps autistic children communicate better - Finding the words


    Dr. Rhonda McEwen, an assistant professor at the University of Toronto, designed the project and is also a parent of a child with autism.
    Source: Making a Difference: The Ipad project

    Best of luck to you and your family.
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  • Profile picture of the author seasoned
    Patrician,

    It IS amazing, I actually had forum communications with two people that were MUTE. One seems like an idiot if you watch her, like the one in that video I put there, but she writes well, claims she has a genius IQ, and is obviously no idiot. She WAS diagnosed as LFA/MR, and NOW is diagnosed as HFA.

    Another is a lab assistant that apparently does really well in the university. She can't talk though. She writes well, has a great memory, and is one that can do things like the rainman character. Again, no idiot. She was diagnosed HFA.

    I found a number that claim no special jobs or real special abilities, but ALSO use a device to communicate.

    That's not to say that all autistics are limited like that, as I met, or at least communicated with, many that aren't.

    Steve
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  • Profile picture of the author thunderbird
    Derek, I know you're a medical doctor and the parent of an autistic child, and have tried different kinds of treatments for your daughter. Just in case it might be useful to you, here is someone in China you could consider consulting:

    Name: Marc Goh (Wu Zhiwei)
    Academic Degrees/Certifications: BSc
    Clinic: Chongqing Naturesway Biotechnology
    Address: Jianxin Bei Lu Er Zhi Lu No.5
    City: Chongqing
    State: Chongqing
    Zip: 400020
    Country: China
    Phone: 861-331-022-2023
    Email: gohmarc.s at gmail.com
    WebSite:
    Summary: Research and application of Orthomolecular Medicine and Nutrition Biology. We specialize in providing nutritional advice and therapies for children with chronic conditions such as ADD, ADHD, learning disability and adjustment disorder.
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  • Profile picture of the author seasoned
    Any decent doctor should know, and be able to readily admit, that they don't even know everything about their specialty, let alone everything about people. Besides, if they did, they could just cure the person.

    Heck, I am a programmer. I will admit right now that NOBODY, including me, knows every computing language, platform, etc.... And that would certainly be more likely than knowing everything about people. I eish I DID know everything. I don't even know if that could be possible for a person, but I suspect it couldn't be.

    Steve
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  • Profile picture of the author Joni D
    I too have an autistic daughter, she is now 24. When she was young her behavior was extreme but greatly improved when she was tested for gluten and dairy or lactose intolerance. Her diet is very clean now, we stay away from all chemicals like meat with sulfites which includes all deli meat, hotdogs and prepackaged meals. Yellow and red food dye affects the brain, we just stay away from dyes. I was told to even stay away from yellow and red foods, but nearly impossible so we don't do that.
    Gluten from wheat can be detected in the urine, so at least test her for gluten. We do occasional Soy milk when needed for recipes but soy is not that good either. Nuts and peanut butter not recommended. It is also common for candida overgrowth to take over the gut. A good book is by Jenny McCarthy Louder than Words, and Healing and preventing Autism A Complete Guide. A woman who did extensive research and helped her son by taking action as her books describe. You may want to research the autism diet, as 85% of Autistic kids have sensitivities and or allergies. Regular MD usually are not trained in anything but medications so if you want to go the natural route maybe find some forums specifically for type of health professional to find. We do chiropractors, kinesiology Dr and a pure diet. Work with her on a computer, she may be able to communicate that way. I feel for ya, been there and still doing it. Take one idea at a time and work it.
    We also got a beeper system so anytime a door opened to go outside it rang to alert us. You may want to get a harness with a leash if she bolts, it sounds cruel but it may be necessary to keep her safe for now. Just some ideas, you can think over, not intended to offend you or anyone. We also prayed over our daughter and kept telling her how smart she was etc. be careful what you say, she is smarter then you make think. Good Luck and keep trying things, stay active and you will see major improvments. Our daughter is totally different at 24 from 4 (couldn't speak, was taught sign lang. and now she never stops talking) Miracles do happen, chase after them.
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  • Profile picture of the author bizgrower
    Welcome to Temple Grandin's Official Autism Website - PhD in animal sciences who has autism

    Dead Doctors Don't Lie - The Original 1994 Tape By Nobel Prize Nominee Dr. Joel Wallach - YouTube - Dr. Joel Wallach - Dead Dr's. Don't lie
    You could continue research into the vitamin and mineral deficiency aspects and the gluten and grain free (my guesstimate) aspects of the impact on autism.
    http://firstpost.com/topic/event/nob...-67248-23.html

    I've not been through anything remotely close, but I empathize. And support Joni D's
    suggesting of extra security measures if it will keep her out of harms way.

    Dan
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  • Profile picture of the author seasoned
    Yeah, I was in a store one time, and watched a kid reading ingredients on some snacks. He obviously wanted SOMETHING, but he went to his mother, who was in the line I was in that was a few yards away, and she would say he was alergic to this or that, and she hated gluten. Some Doctors often say it is foolish, but too many that know from experience that there is a difference, like Joni said. So it is worth a try. and you would be amazed at some things that are OK.

    In the US, the outback restaurant chain has soething I LOVE, and it is gluten free, "The chocolate thunder". A nice brownie sundae. It is on their gluten free menu. Many restaurants here actually have a special gluten free menu, but you have to ask for it. I don't have any allergies that I know of, but wanted to test out a gluten free diet. I felt better and even lost weight. Many things with gluten are fattening. YEAH, I had brownies, ice cream, whipped cream, etc... And STILL lost weight! Of course, I ALSO like their chicken on the barbie, ALSO gluten free.

    Steve
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  • Profile picture of the author derekwong28
    Thanks for your continuing messages of support. Joni, it is great to hear that your daughter is doing well. I hope that she can communicate with you normally. This is what we really want with our daughter but we are nowhere near there yet.

    The real problem with assessing different forms of treatment is that there is a lot of other things going on and possible confounding factors at the same time. Normal people have good and bad days naturally and so do autistic people. We have been taking Omega 3, Vit D and other supplements for years but obviously, we cannot take whether they help or not. Another factor to consider is that she is growing up all the time and there are hormonal changes associated with the onset of puberty and menstruation. In fact, a few other autistic girls at her school went haywire.

    The situation with the Nanny is not as simple as it seems. It is an employee's market right now and we would be at the bottom of the pile in terms of desirability. The last thing we want is a "revolving doors" situation with nannies. They have to be recruited from overseas from Indonesia or the Philippines and the procedure is quite complicated. Having a trained nurse would be prohibitively expensive, especially for long periods.

    We are definitely looking into the possibility that she may be allergic to certain foodstuffs which in turn causes irritability. But right now, our priority must be to modify her aggressive behavior with regards to attacking other people and throwing things. We are convinced that she is doing it because it provides her some thrills.

    I went back to my old workplace the other day and heard a rather tactless comment that was along the following lines "you should pack he off to a boarding house straightaway so that you can come back and do part time work with us". That really got me into bad mood for the rest of the day.


    Derek
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  • Profile picture of the author waterotter
    But right now, our priority must be to modify her aggressive behavior with regards to attacking other people and throwing things. We are convinced that she is doing it because it provides her some thrills.
    Derek, I really don't believe your daughter is lashing out for fun. I believe it's do to her inability to communicate to others what she wants or doesn't want.

    Anyone who couldn't communicate their basic wants and needs etc. would probably do the same thing out of frustration.

    Best of luck to you.

    ETA: I don't know much about this app, but it does support chinese language: Autism Speech NEW RELEASE !!!!

    ETA: Some great additional info here: http://greenbubbledeveloper.blogspot.ca/

    There are probably many more apps. I would seek out a recommendation from someone already using this approach.


    Jody
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  • Profile picture of the author seasoned
    Derek,

    I can't PRETEND to know fully what your daughter is going through. I have had a taste of things that leads me to have my OWN ideas of possibilities. I have listened to, or spoken with autistics that CLAIM to understand. I say CLAIM because they come up with different ideas. Ideas are(MY words shading their meaning a BIT):

    1. Sensitivity issues to almost anything. This one is VERY common, and likely a reason! Some song may have a sound YOU can't even hear that may hurt HER, for example. A tag in a shirt may hurt her.
    2. Various issues that are actually RELIEVED by the action, even cutting and bashing ones head. AGAIN, somewhat common. I can't understand it, but too many say this to be ignored.
    3. Frustration. May not be logical, but still understandable.
    4. To keep in touch with reality. I have heard THIS one from some with AS. Who knows though.

    Steve
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  • Profile picture of the author Kate Luella
    Hi Derek!
    My daughter is also autistic, rarely says a word, but like your daughter, would never be able to say her name or address. My girl is younger tho, and I had heard that the period can be tough for females!
    Having read thru this thread carefully, I see so many wonderful ideas and suggestions, but as u don't know you personally, I will keep my comments brief for now.
    1. I def think u should go full on with gluten free diet for 6mths, then reassess whether to keep or let go, I mean 100pc not just cutting out bread.
    2. Get an iPad, my girl is 5 and she is an expert on it.
    3. I would start the "out of home" idea for weekends if possible, but if not able to, I,d be ok with weekly. I think at this time you call it "respite".
    4. You need plain rigid routines, breaks in patterns like dinner outings is where kids have many problems.
    5. If changing nanny could help, maybe pursue that, but Changing the nanny itself may be detrimental.

    I know how quick kids can escape you, don't judge u or her on that one-off event, overall it just seems she is high maintenance and u have low support. I call all autistic kids "opportunists" not "naughty"!

    Sexual assault now comes in around 80pc for autistic girls, mainly because of the special needs boys around them, so if u can avoid a home, you should. But, is this a perfect world? No. So u need to use your smarts when finding a home. I loved the idea of renting your own 2nd home and getting a few special needs kids together (female only would be perfect) and sharing the cost of staff, but that is a big financial commitment. But it's a great long term solution.

    I think u should look closer at short term respite options (like weekends) available to give u and family a break, but work on gluten free casin free diets, get her onto iPad (with help at first) to talk and play, and seek more advice from people as to long term solutions.

    I don't ever intend to put my child in a home, but I bet u never intended that either. So if a 13 I'm in your position, I,d def seek out weekend respite, and I,ve noticed that my daughter treats me differently to others carers (eg. She is very "rough" with me but not her nanny, and it doesn't wear her nanny down because she goes home at the end of the day), these are the kinds of things only parents of special needs children know and understand.

    I don't envy u right now, but sooner or later u were going to have to deal with her long term care, so just remeber this is her life, she does not dream and fantcise like we do about getting married and how to earn a lot of money, for her life is a challenge with good days and bad days and ultimately she just wants to do what she wants to at any given moment to make her feel better with no real rational reason, ergo, try to get where she is happy, loved and nurtured, which is also good for u and the family, not just her.

    Kate
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  • Profile picture of the author seasoned
    My step mother has a kid that is MR. HE lives at a shared home. I'm not REALLY sure about his condition though. He apparently is one of those ones with simple labor to bring in a little money and help pay for the place.

    Steve
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  • Profile picture of the author bizgrower
    Derek,

    True multi-variate testing/cluster statistics with food reactions, hormones, vitamin deficiencies...

    But, Dr. Wallach does note that sometimes Autism shows about the same time as children move from more natural foods to processed foods and sugars - like pop tarts and cereals with sugar. So, sugar seems to be a major factor - potentially.

    ------------

    About the idea of starting your own group home, here in Colorado USA, the state does (or did) pay the operators quite a bit per month ($2000 or $3000) per special needs child. A co-worker of mine did that. They did not work with autistic children, other needs. He held an outside job and his wife was a social worker, maybe had an MSW degree.

    It was not easy to set up and they had to go through a lot of approvals. I have no idea if something like that is available in your country.

    Dan
    Signature

    "If you think you're the smartest person in the room, then you're probably in the wrong room."

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    • Profile picture of the author derekwong28
      Just a quick update. We visited another school with boarding facilities today and are very happy with it. It offers 4 nights board a week, has a high staff to student ratio and is situated in a very pleasant location. We will apply her to go to day school there first and wait until boarding is available. This is expected to take more than a year. That school does rely on the use of iPADs a lot for teaching so we will get her one as soon as she stops throwing things around.

      Over the weekend, she kicked a baby in the pram as we were leaving an elevator. Luckily, the kick was not that hard and the baby was hit in the shoulder rather than the head. The consensus is that she is seeking some sort of attention and also testing your bottom line. This type of disruptive behavior is best dealt with at a boarding school because rules are much more firmly enforced than at home.

      Our problems is compounded by her younger sister who is diagnosed to have Asberger's. She is a little terror on her own is also being seen by a psychiatrist and psychologist. The sisters get on very badly as there is a lot of jealousy involved. Like her elder sister, she does badly at school and was referred for further assessment. But the big difference she scored 147 in a recent IQ test as opposed to 45 for her elder sister. We would rather that their scores are more even but that is life.

      Derek
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      • Profile picture of the author seasoned
        Originally Posted by derekwong28 View Post

        Our problems is compounded by her younger sister who is diagnosed to have Asberger's. She is a little terror on her own is also being seen by a psychiatrist and psychologist. The sisters get on very badly as there is a lot of jealousy involved. Like her elder sister, she does badly at school and was referred for further assessment. But the big difference she scored 147 in a recent IQ test as opposed to 45 for her elder sister. We would rather that their scores are more even but that is life.

        Derek
        Maybe the younger sister can help you to figure out what is wrong with the younger! They may have similar sensitivities and things that keep the younger behaved and comfortable might help the elder. The DIFFERENCE is that SHE may know before you do, and could gude yo, since she CAN talk. SERIOUSLY! Don't treat her as some self serving brat, as some may.

        Steve
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      • Profile picture of the author Kay King
        Excellent news. I'm sure you are aware there are many successful people with Aspergers. It can be managed but that is another reason to find a place for your older daughter. I'd expect the younger daughter has to fight for attention because of her older sister's problems...right? Alone, she might not be such a "terror" but she lives in her sister's shadow and it's chaotic.

        Sounds like a good school - glad you found it. I hope the boarding option is available soon as that would take some of the pressure off your family.
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      • Profile picture of the author thunderbird
        Originally Posted by derekwong28 View Post

        <snip>But the big difference she scored 147 in a recent IQ test<snip>
        Derek
        That is very high. In contrast, Nobel Prize winning physicist Richard Feyman scored 125 in an IQ test (but obviously, his discoveries and what was involved in making them would be out of the intellectual reach of people with IQ scores supposedly much higher than that). I suspect your younger daughter needs to be mentally engaged in things, and her school is apparently falling short in that regard. If not properly engaged, smart dogs or parrots also climb the walls and drive their caretakers bonkers.
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        • Profile picture of the author seasoned
          Originally Posted by thunderbird View Post

          That is very high. In contrast, Nobel Prize winning physicist Richard Feyman scored 125 in an IQ test (but obviously, his discoveries and what was involved in making them would be out of the intellectual reach of people with IQ scores supposedly much higher than that). I suspect your younger daughter needs to be mentally engaged in things, and her school is apparently falling short in that regard. If not properly engaged, smart dogs or parrots also climb the walls and drive their caretakers bonkers.
          Many people with AS have IQs 1SD or more over normal. 125 Is ALMOST 2SD. Of course, with AS, they have sensitivities, a different attitude, and lack of social skills. They more I hear, the more I think that such problems are the reason for the nerd stereotypes. They may be like those on the big bang theory. Of course, THAT is a comedy, so they try to stress everything.

          But HEY, what about this college student with aspergers that wrote an opinion at CNN about prejudices against AS:

          Leave autism out of mass shootings - CNN.com

          As for the school, it is NOT just what, but HOW! In the US they FINALLY realized this, to some degree, for people like autistics. I guess the squeaky wheel.... In the US, it is often called an IEP

          Individualized Education Program - Wikipedia, the free encyclopedia

          steve
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  • Profile picture of the author waterotter
    Derek, you may want to consider getting a protective case for your daughter's iPad. This site has some rugged cases: iPad 2, iPad 1, iPhone 4 Cases, iPod Touch 4G Cases | Gumdrop Cases

    That's great news about the school! Please keep us updated when time permits.
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    • Profile picture of the author seasoned
      Originally Posted by waterotter View Post

      Derek, you may want to consider getting a protective case for your daughter's iPad. This site has some rugged cases: iPad 2, iPad 1, iPhone 4 Cases, iPod Touch 4G Cases | Gumdrop Cases

      That's great news about the school! Please keep us updated when time permits.
      If you can somehow acclimate her to the idea that it can be used to communicate. HECK, even play games, she will likely be more likely to care for it.

      Steve
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  • Profile picture of the author HeySal
    I hope things work out well for you and your kids, Derek. Not being a parent, I can only imagine what this all is doing to you and your wife. Stay strong and godspeed to you.
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    Sal
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  • Profile picture of the author Kate Luella
    Derek have a think about getting an iPad now. My daughter is only 4, but she understands not to drop or throw the iPad, because she loves it. She now knows how to navigate around the iPad, select APPS, play games, use it to request things, and remember she is a 4yo non-verbal autistic girl! So she's pretty amazing to us, and generally she's not aggressive, so I understand your concern. TBH we had the same concern when the Occ Therapist suggested we give her the iPad to start to get familiar with last year, very hesitant. It's a $1K iPad (top of range at the time). But she was mesmorised by it from day one. We had to get her 5yo Aspie brother one because they kept fighting over the other one. If it breaks, it breaks. But give her a chance. You never know, it might be the tool she's been looking for to communicate with better!

    Kate
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