HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Raising Special Needs Children: Reducing Parental Stress

Question

My wife and I feel like the world's worst parents. Our 12-year-old Aspergers daughter pushes us to the breaking point daily. We try to manage her behaviors appropriately, but we often end up yelling. We know her behaviors are not her fault. But in the heat of the moment, our best intentions are overwhelmed by 12 years of frustration. We have talked to a psychologist for family counseling, but just got a lot of sympathy. We love our daughter and want to do a better job.

Answer

The first thing you have to realize is that you are not the world's worst parents. The fact that you are seeking help is evidence of this. Over time, relationships develop patterns, and sometimes these can be self-defeating. Yelling is the result of your frustrations with a situation that seems to have no solution at the time. I remember how angry I was when my Aspergers grandson (high functioning) was 9-years-old. I had a hard time accepting his Aspergers-related behavior. I walked around with a chip on my shoulder – always ready to correct him by yelling at him.

In terms of behavior, you and your wife can learn some straight forward behavioral techniques that will help. You need strategic guidance – not just sympathy. I appreciate your courage in being honest about how you feel. Anger, one of the most intense and least understood human emotions, is probably the scariest and most socially unacceptable emotion to own up to. It often arises with the thought, "Why me? Why did I do to deserve this?" It is normal for moms and dads of Aspergers children to get frustrated and direct anger at their Aspie, themselves, each other, the doctor, mercury, the local school district, etc. Many parents in your situation also feel guilty (e.g., “It’s probably my fault that my child has Aspergers”).

As with most negative patterns of behavior, it is likely that you promise yourself on a daily basis that this time you will not yell, but at this point your relationship with your daughter ends up in the same place because nobody can figure a way out of the trap. Things may need to be set up differently in your home to help you optimize your relationship with your little girl. Your daughter may be reacting to things that many of us would not realize or understand. She may not understand or be able to let you know what it is. The bottom line is this: you may simply lack some of the skills necessary for raising an Aspergers youngster, and that is not surprising given the level of complications that these kids often bring.

Some of the behaviors of Aspergers kids can push any one of us to our breaking point. It is important to remember though, as you stated yourself, that your daughter is not purposely pushing you to your breaking point, just as you are not purposely "breaking."

So what can be done?

First, be sure to watch out for a faulty belief system (i.e., negative self-talk) that contributes to parental stress (which results in much anger, frustration, and yelling). For example:
  • Giving 100% every day is what every parent is expected to do.
  • I refuse to let anyone else care for - or influence - my ‘special needs’ child.
  • I should always deny my own needs for rest and recreation in order to help my child.
  • I should do everything for my child and not require her to take on responsibilities she can’t handle.
  • I should feel guilty if I need a break or want some attention for myself.
  • I should spend every possible moment with my child.
  • I will be seen by society as a good and honorable person because of the effort I put into being a good mother/father.
  • My child should “like” me.
  • My child should appreciate everything I do for her.
  • One role in my life (i.e., the role of parent) can satisfy all my needs and can support all my dreams.
  • Other people must see me as a good parent, able to handle everything.
  • The success or failure of my child depends entirely on me.

Any of these beliefs (or ones similar to them) will directly translate into anger and frustration. Here are some ways to counteract a faulty belief system:
  • Be able to live in the presence of imperfection.
  • Boost your own self-confidence.
  • Develop a support system by sharing honestly your feelings of frustration, anger, and concern.
  • Develop the positive belief that you can control destiny.
  • Be selfish (in a healthy way).
  • Free yourself from needing outside approval.
  • Learn to catch yourself when you say negative statements to yourself and challenge them.
  • Learn to tolerate change (because kids with Aspergers and High-Functioning Autism change a lot over time).
  • Practice positive thinking by daily affirmations; repeat positive messages to yourself over and over.
  • View love, affection, and approval from your child as a bonus – not a “need.”
  • See the positive side of stress.
  • Understand anger and use it constructively; control anger by controlling wishes.

Other things that contribute to parental stress:
  • Coping with difficult Aspergers-related behaviors
  • Dealing with the school about your child's placement or program
  • Educating neighbors and relatives about your child's issues
  • Financial pressures
  • Getting your child in the right school
  • Home-schooling your child
  • Helping her with homework
  • Helping siblings understand the problems associated with Aspergers
  • Working with your “not-too-involved” spouse on child management
  • Dealing with unexpected meltdowns (especially in public)

How to cope with parental stress associated with raising an Aspergers child:

1. Analyze problems thoroughly:
  • Describe the problem with a specific statement.
  • State how it could be worse and how it could be better.
  • Determine what is keeping it from getting better.
  • Propose solutions for the things over which you have control.
  • Plan action.

2. Use time management:
  • List priorities – both short and long term.
  • Do a time use audit.
  • Compare time use with priority of goals.

3. Develop assertiveness:
  • Know your limits, and be realistic about what you can accomplish. Say no to unreasonable demands.
  • Learn about your child's problems and needs so that you can be an active participant in meetings with school personnel and can offer suggestions to coaches, neighbors, and relatives.

4. Address physiological stressors:
  • Recognize that children with special needs require exceptional amounts of energy. In order to replenish energy, parents need to be sure they get sufficient rest, eat well balanced meals, and exercise vigorously.
  • Learn meditation or relaxation techniques to use when they feel stressed, anxious, or fatigued.

5. Use other stress-reducing strategies:
  • Find a place of retreat (e.g., the bathroom or the car), and go there for cooling off when the tension is very great.
  • Follow your physician's advice.
  • Hire out or trade off chores that are time consuming and distasteful. Sometimes it is well worth paying someone else to do those chores so that you have more time and energy to devote to yourself and your family.
  • Make recreation and relaxation a priority, so that you have some time off during the week. Studies have shown that psychologically healthy families have “less-than-perfect” housekeeping.
  • Team up with a spouse or friend for time off.
  • Use relaxation tapes or exercises to calm down after a hectic day.

It may help you to think about what other feelings you may have besides the frustration and the anger (e.g., fear, sorrow, worry). What would be there if the anger disappeared? Moms and dads like you are trying to make sense out of what has happened (e.g., "If we are good parents, then how come we can’t get our child to behave appropriately – even if she has this ‘disorder’?"). Moms and dads of Aspergers children need to allow themselves to experience anger, to cry, and to scream. It is all part of the grief process. Indeed Aspergers can be tough to live with, but trying to deny or minimize how hard it is to have an Aspergers youngster only prolongs the suffering you are describing.

Anger is a reflection of the hurt and fear. Gaining perspective, along with time and compassion, can help curb the associated frustrations. It is probably worth another try to connect with a mental health professional who can guide you through this. If nothing else, your Aspergers daughter will teach you to be patient with what you can’t change.

My Aspergers Child: Preventing Meltdowns and Tantrums


COMMENTS:

•    Anonymous said… ABA Therapy has been a life changer & life saver for our family.
•    Anonymous said… All these so called therapists cost money its easier said than done ,my son and daughter in law have a massive problem with their son no help here in nz its shocking they love him as i do but at times who knows what triggers him off but he also brings them to breaking point. The temper is unleashed and its shocking so I feel sorry for you as our country is so far behind the times its not funny.
•    Anonymous said… Excellent tips for the guilt ridden parent. Thank you!
•    Anonymous said… For therapy, seek out a Cognitive Behavior therapist who has worked with Aspie teens.
•    Anonymous said… I can so relate to this. Our daughter is 9. She is not yet diagnosed but I am convinced she has aspergers. It's tearing our family apart. And the reality is that not even good, conscious parents can deal with this alone as a team. It really takes other people, professionals community and family. So far we have had zero help or support. professionals have not made the diagnosis hence we are not getting appropriate professional support, family writes her off as a brat and blames our parenting for her meltdowns and rigid thinking. Community rejects her and does the same as family. I guess if nothing else, take heart that you as a couple are at least both on the same page and fighting for her. I often feel like I am fighting for her alone as my partner frequently forgets her challenges and adopts the same attitude as everyone else. His responses to her frequently exascerbates her issues. As patient as I force myself to be majority of the time I get to the point of yelling as well as breaking down to tears. But they are our children and we have to keep going and fighting for them no matter what. There is no other choice. I have to remind myself daily that difference is not deficit and that her wiring is beneficial in so many ways to our rigidly conformist society. Someday she will find her niche and thrive. I have to believe our girls came here to change this world. It needs a change.
•    Anonymous said… I do not engaged with my son in a meltdown. I will say to him I understand. (I do too) He has 2 rules keep his hands and mouth to himself. I stay matter of fact. He goes to his room to calm down. When he is calm we talk about what happened and why. write down the rules make a plan. If he gets verbal to me He looses computer for the day. I really think it is a lack of not knowing the right way to communicate. He is 16 now and much better. No more 4 hour meltdowns. It does get better. Hang in there.
•    Anonymous said… I feel you... Going through the same thing with my ASD Miss 7 frown emoticon
•    Anonymous said… If you haven't addressed diet...I highly recommend...removing dyes and gluten and minimizing sugars were game changers...helped reduce frustration and what we call "tunnel vision". We also do ABA...it gives him practice on appropriate skills and makes him more aware of his own being. We also incorporate essential oils and it has drastically changed his moods...less meltdowns and anxiety!! Good luck! Jr High age is some of the most difficulty years for an aspie kid is what we hear over and over! Try your best to create your own rules where you disengage by using breathing technique or counting or whatever...so you aren't wasting negative energy and increasing your own stress! I have a phrase I say over and over in my head when I find myself overwhelmed or engaging in useless behaviors like yelling "relax and be productive...relax and be productive " I repeat till I feel calm and generally that gives my son time as well...and I tell him...I need a minute because I love you and my only goal is to help!
•    Anonymous said… I've found more help on fb sites than any doctor. Start with one issue to work on at a time so it's not overwhelming. And keep asking fb sites questions. We are the ones dealing with it and can instantly give ideas. Our 12 yr daughter has been taken out of school and placed into a Montessori type school that has only 25 kids K-8th grade. That helped a ton. After a year when she ages out I don't know what we'll do, probably homeschool and get her in small group clubs/activities . Also, a chiropractor has helped us greatly, as well as a sensory specialist
We also use quality probiotics, vit D, omegas, and no dairy . Reducing stress for all of us has been our priority
•    Anonymous said… My 15 year old son was just diagnosed this past February with aspergers so needless to say we missed out on all the early interventions. Now we are dealing with an out of control teen with melt downs. He is now in an inpatient facility awaiting for a residential treatment program to be approved. Does anyone know of any good facilities on Pennsylvania.
•    Anonymous said… My son is 14 and just recently got diagnosed. I choose my battles wisely. I just got him to do dishes. He wont do them all but he will do one sink full. I build from there.
•    Anonymous said… Our daughter was diagnosed at 12. One thing we have found that works well, on the advice of her therapy team, is to give very concrete answers when she asks for something. Not knowing if or when she'd get something she was asking for would crank up her anxiety. For example, she'd ask when she'd get to go xyz. I'd tell her, we'll see. Her behavior would deteriorate and she'd get cranky. Now I tell her, at 4PM or no earlier than 4PM, I will have a definite answer then. Somehow that calms her down. If she continues to ask, our code word is "badgering". She understands, based on conversations we have when she's in a relaxed mood, that if she badgers, she won't get what she wants at all.
•    Anonymous said… Read the posts on this page and ask a ton of questions. My son was not diagnosed until he was 11. I researched where I could take him for testing and diagnoses. It was a true life saver. I had an older daughter who put me through hell, but then I had a son I was losing and had to learn how to be HIS parent. I stopped listening to others about what I should be doing and started asking others on here how they handled it. It completely changed our lives. The normal parenting rules do not work for these kids. But once you start working together these are the biggest blessings ever. My son is easy now.
•    Anonymous said… we need this today. Read some of the comments. We are not alone.

Post your comment below...

29 comments:

Anonymous said...

I understand 100%. My 9yr old is like this and doing bad at school cause of his outbursts. Sympathy is also all we get and the "we understand' from everyone but were still frustrated.

Anonymous said...

Tough job, I am the same with my 13 year old son. It's very difficult. They take a lot of love and patience. Keep the faith, and lean on that. Take all the help you can get do not go it alone.

Anonymous said...

I feel the same with my 10 year old son, its hard, sometimes I forget and my patience isnt there.

Anonymous said...

My husband and I have 4 children. Our OLDEST (the 9 year old) has Aspergers and is by far the WORST behaved of the 4. He is constantly causing stress and problems with the other kids and my husband and I find that we are very often besides ourselves. It doesn't really help to know that there are other parents "like us" out there because it doesn't eleviate the day to day stress. We need a vacation but when we say we need a vacation the ideal situation would be days away from one or all of our kids. Life is challenging enough with 4 kids and then you add a high needs child to the mix and things gets crazy!! Praying for all the parents with Aspergers kids!!

Anonymous said...

With my 18 yr old asperger twins.....meltdowns happen at least every 4 hrs......I have gotten better in the last few yrs at not "immediately" screaming....but it almost always ends up in a verbal confrontation and tempers are lost .....when you pick your battles letting some things slide...then you're accused of not disciplining......if you discipline every time something happens ...all you ever do is fight........people who "understand" tell me they dont know how I do it....but they also dont volunteer to help either......and friends?.....those disappear the moment they see their first meltdown.....the only comfort comes when the child is in "good" mode and its all worth it.......I cant listen to the "well meaning" people who tell me that we'd all be better of if I placed the boys in inpatient care........no matter what ....they're My boys......

Anonymous said...

Thank you for this article!!!!! I can't wait to read it! I have a 12 y old boy who has a mild case but r loving house has turned into a living hell :( I've tried everything. Nobody understands unless they r living it. I love him and will continue to support him. I am always educating myself on this and am open to help @ anytime. I can't wait to read the info! Good luck :)

Anonymous said...

I feel your pain . I go thought the same thing on a daily basis with my 14 Yr old daughter . My problem is I am losing my patience and always end up yelling and obviously that just makes it worse . If anyone has any advise i would like to know it too !

Anonymous said...

God I thought i was the only parent who felt like this...

My aspie pushes me daily and I try calming soothing words and mommy time outs but he knows the buttons to push n I usually end up yelling. It's not his fault and the guilt stays with me longer then the yelling stays with him. But I'm glad to know others experience this issue... Not just me. How do we correctly handle this?

Anonymous said...

My wife and I have learned that having a time out location for our son is best. We make him put his head on his knees and sit quietly. This has helped to correct most of his behaviors. He has to tell us why he is in timeout, and he has to apologize sincerely. It is also important that parents work as a team. When one parent is nearing breaking point the other has to take the child away from situation so other parent can regroup. It is important to let the child know that their choices are what gets them in trouble, and that if they make better choices then they can play etc. we have found that many of thesr outbursts are attention seeking as opposed to actually distress. We understand your situation, and you will find what works for your family.

Anonymous said...

You are not alone...Would love to know how to handle better...

Anonymous said...

It will get better as they get older. My son is nearly 16 and while other issues develop being a teen (as they have with my non aspie teen :) some of the school difficulties level off. I think the toughest times were elementary to junior high. High school is a bit better. It's not easy raising any child let alone and aspie. Sometimes humor helps, it's pulled me through a lot of embarrassing or frustrating episodes. As our son got older he's been able to explain how he felt during certain incidents from earlier years, it really puts things into perspective. It takes them time to learn to express themselves, but one day your child will be able to explain some of the reasons she acted out. Hang in there, and find time for yourselves as a couple too!

Anonymous said...

I feel the same way with my 8yr old. But the frustration is even worse for me in trying to maintain control because I also have aspergers.

Anonymous said...

I can relate to almost everything that's been said. My daughters 14 & every day is a constant battle. I find leaving her on her own eventually calms her down, her behaviour causes huge issues for all the family. My biggest concern is now she's older how will she cope in the 'real' world?!

Anonymous said...

can relate we are working on not gettign so worked up... in some ways we just stop and say hold on i need to figure out what your saying.. makes them clamer feeling like its us not them... in truth it is we just dont understand the why or the what at times. there are still time when we just have had enough its time for us to have a time out..

Anonymous said...

Ease up on the guilt. Sometimes a curse or a shout at aspie is not the end of the world. Pik the battles. U r doing ur best. Enjoy the gd days. Let less important stuff like housework slide & concentrate on the family. Xx we hav all been there.

Anonymous said...

I HAVE THE SAME PROBLEM WITH MY 12 YEAR OLD SON! CHILDREN ARE A FORGIVING SOULS AND I JUST START A NEW EVERYDAY AND ASK FOR FORGIVENESS

Anonymous said...

I have a High functioning autistic son. With his outbursts I sit him on a chair in the corner of my dining room. But on the wall he faces are pictures of his family being happy. And visual aids that say I don't it when mum is angry. A picture of rainbows. Because that is what he likes. And photos of his pets. So he has time to calm down while
Looking at positive things, but knowing that mum is angry too.

Anonymous said...

we are in the same place with our 9yr old. last year we actually did respite care with a children's crisis center for a day because we had gotten to a breaking point and every adult in his life was at a lost, especially me. It was the best thing I ever did even though no one in my family understood it. He was someplace fun and had people there to help him and very few other kids so everything was 1on1. When I picked him up we both were happier. we haven't been back to in a situation like that again but the daily struggles are enough to test you. I like Nicole's idea, I'll have to try that one.

Anonymous said...

First let me say I am so happy that I have found a place to ask questions, vent, and bounce ideas off of. My son is going to be 15 in February. This was his first year in highschool. The district sent him to a least restrictive enviornment in a regular highschool. After daily beatings and bullying that the school would not do anything about.. I took him out of school and am now home schooling him. He now blames me because he has no social life and I took that away from him. He would rather get beat everyday and have teenage "friends" then be safe and no social contact with children his age. Not sure how to handle this but I know I have to keep him safe and his idea of "friends" is not realistic.

Anonymous said...

Thank you so much for this great webite! It is very informative.

Anonymous said...

Love the quiet peaceful area in the dining room. We redirect our son & reassure him it is ok to be upset, but not to yell & scream. We change rooms to distract him. We tag team as a family & give each other emotional breaks.

Anonymous said...

My son has aspergers and have yelled at him, it can't be helped, it does not make you a bad parent as you are trying to deal with your daughter and not leaving her to do what she wants x x

Anonymous said...

I can agree when they start yelling & getting down right nasty. It is hard to remain cool. Yet I have learned that if I yell back it makes the situation worse. My son gets so much worse then. I find it best to let him get it out & over with. Then once he is calm we talk about a better way to get the point across without getting nasty. Slowly we are working on behavior modification. It has been 5 months now, he is 8 yrs old. I can say for the most not all the time but there is a positive change. We all can make small changes for the better. It takes time.

Anonymous said...

My daughter is almost 18, and finally this past Fall, we discovered that she has Aspergers. I can't tell you how many times we've found ourselves in the situations described above and have felt that we were so alone in our situation. While knowing others are in the same boat doesn't take away the pain, it does offer a lifeline to others who understand.

Anonymous said...

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Anonymous said...

I know it's not easy but yelling does'nt help Aspie kids-leave the room,don't sweat the small stuff and give lot's of positive reinforcements.Good luck.x
15 hours ago · Like

Anonymous said...

Dear Mark,
I have been gratefully receiving your email newletters. Thank you for generously sharing your knowledge.
I have a 13 yr old son with mild learning disabilities , A 12 yr old son with an ASD, ADHD, ODD diagnosis, a 10 yr old son with an
aspergers, ADD, ODD diagnosis, and and 8 yr old son who will require some intervention in the near future...
I felt i should share with u a comment from my 13 yr old..
After a very stressfull week, mstr 13 ran away. Several stress filled hours later he was safely returned home.. when asked what was bothering
him he said "mum, to me, the word 'special' mean something extra good! So when you talk about my brothers having special needs, it makes
me feel like I'm not as "extra good" as them. So it makes me feel like I'm not as important as them!".
This broke my heart to hear. After much consideration and discussion with a friend in exactly the same situation, we have decided that the word special needs to
be removed from our houses - in relation to childrens needs.
We now have children with 'Different needs'. This has been approved by master 13 and he is now happy to know that he is just as extra good as everyone else.
Maybe this could be the topic of discussion for the many other families in our boat.

Anonymous said...

Im reading this in tears, i myself feel so broken and cant cope with my 2 aspergers boy. i live in a city with no family around and what seem superficial friends. My husband is overseas working and my boys near 4 and near 7,fight, trash the house, mess in one room after the other, never listen help or do as they are told. AND IM SO SICK OF THE SOUND OF MY OWN VOICE. on a road trip we had to cut short due to master 7 pooing himself several times a day and going through 4 rolls of looroall a day, i finally snapped and said i regreted being their mum and wished i had never had children. Master 4 i wanted to leave on someones doorstep and he keeps asking me now to hurry up and leave him on someones doorstep. These are things you should never say to your children....
one is lethargic, floppy, not much energy to do anything and the other is hyper racing round making noises all the time LOUDLY, is cruel to the animals,wrecks the house and hates his brother, has night terrors and never sleeps a full nite......
im broken and angry and sad and dont know what to do, i cant cope with them at the moment or my house or my own care, i feel ill and my hair is falling out......Every night i want an early night but to get a break and time to myself i stay up too late, then the fighting and humming all starts again far tooooo early in the morning. Its relentless, never ending....and i feel i dont desearve to be a mum, i shout and there hands go straight on their ears, or they run away...at the moment things are bad. Im waiting to cope of things to be better.....even my mum and dad cant cope I have never had a night without my children....sorry to be so negative but today I dont see a brightside...maybe tomorrow will be better!!from mum trying to cope

CoolAsKittens said...

Anyone looked into Parent Management Training? I hear the methods used in it are helpful to teach parents of kids with behavioral problems how to deal with them, if used properly. I've read up a bit that it's been used with a lot of success for kids with oppositional defiant disorders, autism and such, just wondering if anyone's heard of this or tried it?

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually. Thus, the best treatment for Aspergers children and teens is, without a doubt, “social skills training.”

Click here to read the full article…

How to Prevent Meltdowns in Aspergers Children

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's child is totally out-of-control. When it ends, both you and the Asperger’s child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

Parenting Defiant Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

Click here to read the full article…

Older Teens and Young Adult Children With Aspergers Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

Click here to read the full article…

Online Parent Coaching for Parents of Asperger's Children

If you’re the parent of a child with Aspergers or High-Functioning Autism, you know it can be a struggle from time to time. Your child may be experiencing: obsessive routines; problems coping in social situations; intense tantrums and meltdowns; over-sensitivity to sounds, tastes, smells and sights; preoccupation with one subject of interest; and being overwhelmed by even the smallest of changes. The hardest part is you feel like you’ll never actually get to know your child and how he/she views the world.

Click here to read the full article...

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