My oldest (now almost 14) had a really tough time last year.  I believe the onset of puberty set him back for almost 8 months.  We had lots of aggression and some"private behaviors" in public places.  Like Charlie, he surpassed me in height.  Fortunately, he has since calmed back down and made a giant leap forward. 
A book that has helped me understand his perspective is "Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism.  What makes it different is that the book is co-written by Deborah Lipsky, an autistic adult who has lived through these problems.  It is a slim book packed with useful information.  I bought multiple copies and shared them.  At school, one of the EAs made a worksheet to share with the whole school based on the techniques.
In the meantime, thank you for sharing your life with Charlie with us.  I am also grateful for Dora's column; I have learned so much.  Love and peace from Minnesota!

Well one thing we all have in common is we are on a journey that has giant leaps and set backs. Sometimes we get stretch by too many big challenges happening all at once. Sometimes there is moments of peace-an ordinary day.

As far as the future goes I have found the above to be true. And yet after raising two generations (brother/son) I will get a handle on one of the pieces and pretty soon another pieces until the complex will become more manageable pieces. Obviously the woman who wrote Wendy's book recommendation, Managing Meltdowns: Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism. eventually figured things out but there will always be new challenges. Our kids have a hard time handling the "new" and the new creates challenges they/we have to learn how to handle.

However when I started the journey with my brother I knew nothing as an 8 year old  about mental retardation and my son's autism was like starting over again. I did learn to live in the moment (today) not the future or the past because if there is joy in today I don't want to miss it. I want to reach out for happiness every opportunity I get. While my aging mom takes care of my brother any moment my life could change. My last child left home last week and it is the first time since I was 8 to enjoy my life. So make some plans for your child's future but also focus a little on yourself. It will make everyone in your family(including your child) happier if you are happier too. 

@Wendy. It sounds like a wonderful book on meltdowns. I think it is wonderful that you give out copies to improve the quality of life of others. New ideas for difficult problems.

@Kristina. These books would have been great to have for any parent starting out. Helpful to know what the big picture is that parents are dealing with and how to manage the different parts of the puzzle.
The First Year: Autism Spectrum Disorders. It's organized into days, weeks, and months, to be a "walk-through" guide about "everything you need to learn and do" by a "parent-expert," First Signs founder Nancy D. Wiseman, Each chapters is divided into "learning" and "living" sections, with the intent of giving a parent both "how-to's" and information, and also "actions to take and perspectives on the journey"

The start of the autism journey is similar in ways I think to entering  the autism adulthood journey. At first there seems to be this complex situation to deal with and then over time we get a handle on what we have to do. I use to get comfort from knowing that other parents have raised adult autistic children.

I like this article by Ann Dachel about the Chicago Tribune articles:  http://www.ageofautism.com/2009/05/on-media-the-chicago-tribune-fails-children-with-autism.html

I agree with you, Kristina, that "We need make our choices with a mixture of savviness, and extreme caution, remembering everything we've learned, and getting on living as we can."  It's so hard to know these days what will benefit your child.  For every treatment, we must evaluate the cost, risks, possible benefit, whether we have confidence in the provider, what we have learned about the treatment from various sources.  But many people with autism are benefiting from a variety of "alternative" treatments. 

As with any medical specialty, providers are human and some are more competent and ethical than others.  I don't know anything about Dr. Eisenstein, but I do know that some alternative practitioners are helping our children, with great care and intelligence.

If mainstream medicine would pay more attention to these treatments instead of just casually dismissing them as ineffective, and any improvements as coincidental, we could have a better understanding of why some treatments work better for one child than for another.  Yes, I know about the placebo effect, but there are very concrete examples of dramatic changes in some children after a change in diet, vitamin B-12 shots, and/or chelation.

I truly hope that things will go better for Charlie, Kristina.  Careful of too much sushi as most fish these days contains mercury.  Very best wishes to you and your family.

Something harmless, safe, cheap, and available without prescription:  Epsom salt baths are reported by many parents to have a calming effect on their kids w. autism.  Just add between a half and a whole cup of epsom salt to the bath water and soak for 15 to 30 minutes.  http://www.ageofautism.com/2009/05/tales-from-the-crib-sulfur-the-missing-piece-of-nerve-conduction.html

Good luck and best wishes to Charlie, you and your husband.

You have probably used all calming techniques by now but just in case one thing we have always done is get Conor to count from 1 to 100 by ones, twos, tens etc. Then doing some simple math if 2 + 3",  11 +4 + etc.

Last night Conor was agitated and we had difficulty calming him  until I notice that our digital cable TV guide was on and indicating that "Jeopardy" was about to come on.  I switched to the appropriate channe.  Conor immediately, and I mean immediately sat down on the Couch with me, leaning against my shoulder and watched the entire episode without flinching.  The final musical them of the show used to get him so excited he would leave the room.  Not the show with its music and Q & A sessions calm and intrigue him.

My typos were many in that last comment.  Final sentence should say noW the show with its music ...

I wish I could get Matthew to take a shower, he is kind of scared and thinking I need to get a hose first and start from there.

I have the first years book too and wish there was one for the middle school years, so many of us are at this stage now.

I have no more meltdowns (Baker) and Freedome from Meltdowns (Thompson) and will be looking for Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism that was mentioned by Wendy.

"The way in which a family functions, is influenced by the parent's perception of their child's difficulties". When parenting an autistic child we are on a long journey of the unknown. Caring for our children involves successes and mistakes. We try our best. To properly care for a child there needs to be a working relationship between the parts:  Autistic child, family, and government. Absence of one part puts too much stress on the other parts and our (autistic/normal child/spouse) quality of life. Where would we all be if their was no educational system or the teacher who knows how to handle our child at school on the Long Road? We can't do it alone and every parent does the best they can to love and take care of their child. It is important to hear the message that parents care and do their best to love their child for everyone needs support when times are tough at home. Otherwise how could we continue on the journey?  Parents need to be supported for the benefit of their child.

"@Kristina. Thanks. I think there are vulnerable people out there. I think you and Dora and people on this blog have kept us informed. I think most people were resistant to the subjects of restraints and placement in the classroom. For me it was a hard topic because of past experiences. I had a hard time going there. Now the problem is so epidemic that the government is trying to pass laws. So I think you and Dora have made changes in autism. Your blogs increased my awareness of the number of children hurt/dead and the need for more laws. There are people who believe in Dr. Eisenstein. I agree that he is a doctor with a 'troubling' past and controversial treatment. So I thank you for helping us become more aware. Kindness regards.

 I know I have made mistakes raising a complex child without an operation manual. So blogs, internet and information helps us on the journey. The internet is such a powerful tool. We can check out Autism topics such as  people, treatments and parents comments. Each person/family situation is uniquely challenging. Each child has different medical needs (genetics/unique medical history) and different autistic characteristics and different degrees of behavioral/ psychological and educational challenges that have to be addressed. The internet with autistic research sites has helped to make people less vulnerable and more empowered. Since each child has unique needs some of us have more on our plate than others. I can't know what it is like for Charlie and the rest of your family. You have pieces of my journey which is a different journey from everyone else.

A child has an important need to be loved and accepted by their family because that will be the child longest relationship in life. The Research below will show that another important piece of the autism puzzle besides our children is the relationship of that child to her/his family. Consideration of the Child, Family and Government services(laws, education etc.) and supports(assisted living etc.) is needed. Each part has a relationship and its importance in terms of being balance so as to give our children quality of life. This is evident when 1. government doesn't provide sufficient adult autistic housing and employment. Parents and their children are affected by the absence of government assistance. 2. Autistic children/adults have taught us how they are affected when denied a voice. This situation creates imbalance in the parents/government meeting needs in appropriate ways through laws and resource allocation. Our efforts and our children's lives are diminished without their voices.

Finally,the last puzzle piece is our autistic children depend on their 3. parents to advocate and meet their needs. "There is research evidence that family stress can contribute to unfavorable prognosis. Family stress associated with limited financial resources, lack of appropriate services, and insufficient support systems are examples of family system risk factors that can contribute to poor prognosis (of the autistic child)."

It is important to look at basic parental duty. There are parts of this duty that are difficult to do with a disable child. As parents we struggle to find a way.

The basic parental duty that a person has to fulfill is to provide the child or children with social development and security. It is the duty of the parents to see that their child or children are emotionally, intellectually and physically secure in the society. At the same time it is the duty of the parents to make an individual fit to face the world when left on his own".  http://www.whatisparenting.com/  from LivePerson A World of Experts counseling. We all struggle to try to meet our parental duties when caring for an autistic child.

"Coping with stressful situations that are beyond one's control is one of the greatest challenges of life. With no scope of reducing or eliminating the sources of stress, such situations require strategies where one changes the self to fit the situation. Understanding the ways of family coping is very important, as these are central to cognitive models of stress and coping often applied to families of children with disabilities (27)". Each family will try to find ways to help their children and this should be encouraged. Trying to find help in dealing with meltdowns or challenging behavior or getting speech or occupational therapy etc. are parent attempts to help their child and do their duty as parents.

I think it is important to look at the involvement of parents in the care of their autistic child/children. The parent's ability to accept the child difficulties influences the way the family functions. Involving the parents by providing information and making them an integral part of the program enhances the child's skills and the parent feelings of competency in dealing with the child. If the parents took an optimistic and caring view, the sibling (family) was more likely to do the same.

All you have to do is look at the blog written about Noah Greenfield from Time Magazine May 6, 2002. From Twyla.
A N.Y. Times article about Karl's father's books about Noah http://www.nytimes.com/1987/02/15/books/doing-battle-with-life.html?pagewanted=1
"I accepted the fact that Noah and his problems could fill a battleship of parental duty and obligation, leaving my mother and father too spent to worry about the more banal problems of their normal son. But at some point in my early teens, in the confusing years of adolescence, I stopped having friends over. Noah's condition dictated what we ate and when we slept and to a great degree how we lived."... "Eventually, the responsibility for Noah will fall solely upon me. I imagine I may have to move my own family back to California to visit him every weekend, so that those caring for him will know that despite Noah's temper tantrums and violent outbursts, he is loved; he is a brother and part of a family".

As the research shows below "parents have to be involved in their child's care to enhance the skills of their child and to reinforce belief in their own competencies"." One research finding of particular importance is that pre-intervention parental stress levels may be one of the strongest predictors of the success of early intervention programmes". "Environmental risk factors such as lack of services and negative attitudes can also have an adverse influence on the prognosis of the child with autism". "The way in which a family functions, is influenced by the parent's perception of child's difficulties".

Every person has their own unique medical problems- some have genetic and family histories which give them unique medical/psychological/behavioral profiles. We are not all over weight, diabetic, or schizophrenic or having meltdowns etc. Some children only have autism and good health. Others have additional medical issues etc. and autism. Some families have been taught by their parents to use alternative forms of treatment such as traditional chinese medicine , homeopathic remedies, etc. So each family might have different things to deal with in different ways and some families have to deal with more issues than others.

How do families deal with the challenges of an autistic child? "In fact, research has shown that autism can create greater parental anxiety and tension than parents of non-disabled children (2); than parents of children with other physical or learning disabilities (3); or parents with children with other developmental disabilities (4)".

"Furthermore, the more the negative characteristics a child has, the more socially isolated the family will be (6),and more the feelings of stigmatisation that they will experience. Gray (3)found that almost all parents with children with autism have felt stigmatised in public situations."

"Adjustments to the reality of child's condition, housing and finance are some of the other factors that influence parental stress. In the cases of families with aggressive or violent children, the parents experienced high levels of stress and had few resources in terms of treatment or residential placement to deal with their situation (7)".

"(11). Environmental risk factors such as lack of services and negative attitudes can also have an adverse influence on the prognosis of the child with autism. One research finding of particular importance is that pre-intervention parental stress levels may be one of the strongest predictors of the success of early intervention programmes"

"Involving the parents at this level, by providing more information and making them an integrated part of the child's education programme not only enhances the child's skills but is also instrumental in reinforcing belief in their own competencies (14)".

The way in which a family functions, is influenced by the parent's perception of child's difficulties. Dunn (30), studied children's close relationships and suggested that a family's response to this type of stress influenced the siblings' perception of the situation. If parents react positively to their child with special need, then the sibling relationship tends to be more positive. If the parents took an optimistic and caring view, then the sibling was more likely to do the same. Thus the parent's ability to accept their child's difficulties influence the ways in which a family functions".

Source of  these research studies:
Research on Families:
Asia Pacific Disability Rehabilitation Journal
62 Vol. 16 No. 2 2005
J.C. No. 123. D:\Jayaprakash\A P D R J\APDRJ_Vol.16-2.pmd
PSYCHOSOCIAL SUPPORT FOR FAMILIES OF
CHILDREN WITH AUTISM
Ashum Gupta* Nidhi Singhal**
www.aifo.it/english/resources/online/apdrj/apdrj205/autism.pdf

In conclusion I feel the importance of Parents in autism needs more emphasis. I think it is important to look at the importance of  involvement of parents in the care of their autistic child/children. Autistic, parents and government are interrelated to each other. The absence of one will put stress on the others. Each is important. The parent's ability to accept the child difficulties influences the way the family functions. Involving the parents by providing information and making them an integral part of the program enhances the child's skills and the parent feelings of competency in dealing with the child.

 Parents try to fulfill their parental duties to their children in their own way. If the parents took an optimistic and caring view, the sibling (family) was more likely to do the same. We need to be supportive of parent efforts so that our autistic children can be loved and accepted which contributes to a favorable prognosis and quality of their life.