Positive Outcome Parenting

Welcome to Positive Outcome Parenting. When it first becomes apparent that a child is not developing in a typical fashion, is struggling in school, or may need medication, parents are suddenly thrown into another world where finding help for their child becomes a bewildering maze of many different professionals and many  different opinions, The purpose of this site is to help you find your way through the maze so that you can do the best that you can for your child.

I am a parent with some hard earned life experience, not a doctor or lawyer, so none of the information here should be considered legal or medical advice.  There are many wonderful sites and support groups out there for any particular diagnosis, some of which I will mention. This site has a broader scope. It is mostly, but not entirely, meant for the alphabet soup kids. These are children who get a new acronym with every different professional they see. In my experience it is best not to worry too much about labels, but to make sure that children are receiving effective treatment, when it exists. Because we are looking at so many different aspects of this journey, most subjects will be treated sketchily. Entire books can and have been written about any of the subjects discussed here. I have tried to provide tools for additional research in the form of links and book recommendations. Because I live in the United States. most of the information will be about resources and education here.  Laws and services covering disabilities will differ in different countries.

Some children are sunflowers and will bloom wherever they happen to sprout up. Other children are orchids and will only thrive under the right conditions. The orchid grower needs to learn a lot more about orchids to be successful.

A new study indicates that children who have had surgery with anesthesia before the age of two are three times more likely to have learning disabilities. This risk only appears to apply to very young children who have had more than one surgery.

The article acknowledges that it is difficult to separate the effect of the condition that caused the child to need surgery, or the effects of the surgery itself, which is a traumatic event, from the effects of the anesthesia. No mention is made of whether the children received oxygen, which recent fMRI’s have shown to have a disturbing effect on the brain’s function. Also, all of the children who were in the study were all born between 1976 and 1983, and the procedures for using anesthesia and in some cases the kind of anesthetic used have changed since then.

This study does not have enough answers to draw any conclusions from, but I certainly hope that more research will be done.

http://www.huffingtonpost.com/2011/10/05/anesthesia-learning-disabilities_n_992983.html

https://www.phoenix.edu/news/feeds/spotlight-on-education/2011/07/study-half-of-texas-students-have-been-suspended-or-expelled.html

If the questions arises as to whether discipline in schools is too harsh, or whether suspension and expulsion negatively impact a child’s school career, this study makes it obvious.  Only three percent of the suspensions and expulsions were due to violations that required disciplining under state law. I don’t know Texas state law, but zero tolerance policies usually require discipline for violations that include bringing weapons or drugs to school, or committing acts of violence. Ninety-seven percent of the disciplinary actions were discretionary. They varied widely according to the school system, and disproportionally affected African American and Hispanic children. Children with disabilities were more likely to be disciplined, depending on their category of disability.  A child with a label of emotional disturbance was far more likely to be suspended or expelled- a child with an autism or mental retardation label (intellectual disability) was slightly less likely to be disciplined.

Children who had been disciplined were more likely to repeat a grade.  Half of children who had been disciplined 11 times or more did not graduate.

As parents, we need to make sure that our children are not in overly punitive school systems and disciplinary actions do not set them behind in school or create a war between the child and the school system.

The full report is here:

http://justicecenter.csg.org/resources/juveniles

A friend of mine is beginning her career as a doula. If you have need of someone to help you through the birth experience, and you live the Lee’s Summit, Missouri, area, go check out her facebook page.

http://www.facebook.com/pages/Small-Blessings-Doula-Services/210875318962237

It’s happened again. Once again a parent of an autistic child has killed their child, and turned the gun on themselves-this time successfully. I can’t pretend to understand how Dr. Margaret Jensvold could have killed her son, Ben Barnhard, and then herself. I don’t know what kind of personality problems or psychiatric issues that she might have had herself. I think she may have had the same kind of fatally skewed thinking that men who lose their jobs and kill their families have-that their families can not survive without them.

What  I do know is that she had the same kind of problems that face all of us whose children have some sort of difference that makes then not fit into the very narrow confines of normal, as defined by the school district or by society at large, whether that difference is tiny or great. I know that she was alone. The reason I know that she was alone was that the bodies were not found for several days. Her ex-husband had not showed up on schedule to pick the child up for visitation, and evidently didn’t worry enough to do anything about it when he did not make contact with them. Newspapers piled up in the driveway, and a co-worker finally contacted the police after she had not seen Dr. Jensvold for several days. The family said that they did not speak with her often. If she had anyone in her life to talk to every day, they would have been found sooner.

We know from the suicide note that she felt alone against the school system. Not only was her child bullied in school, she was bullied by the school, at least from her point of view. She wrote and spoke of the school holding meetings without her, and not allowing her to speak at meetings.

She was drowning in debt. Although she thought that the school was not meeting her son’s needs, showing people reports that his achievement tests had dropped over the years, the school felt that they were adequate and did not agree to pay for another school, which they sometimes did. She could not afford the school she wanted to send him to.

Like so many people with children on the spectrum, she had gone above and beyond to try to meet his needs. There is great stress in thinking that if only you feed your child the right foods, give them the right medication, find the right therapy, or send them to the right school, that they will flourish and somehow be like everyone else. It puts all of the onus on the parents. If they don’t somehow find the mommy magic to do the right thing, they will have ruined their child’s life forever.

People with autism, with weight problems, with learning disabilities, with poor social skills or anger control issues-they are still people first. When they are children, they are children first. Bernard was a child with a pet cat. He liked to fold origami. He enjoyed many of the pleasures of childhood. His loss leaves a hole in the world.

I just want to say-be kind to a parent under fire. Don’t judge when you see a child acting up in public. Don’t judge someone by their child’s disability or their power to fix it. Don’t let the mother and child be isolated by the child’s disability. Reach out to them. Don’t, as another family member, criticize the parent’s parenting by the results it brings. They are facing a different level of difficulty than you are. Schools, don’t put yourselves in adversarial positions with parents. The idea behind the Individuals with Disabilities Education Act is that the school is supposed to find and accommodate for those students with disabilities, not make the parents fight tooth and nail for every little thing they get for their children. And for the love of God, don’t allow bullying of children by other children.

An article written by Dr. Steve Dudley to parents on the importance of vaccination and the horrors of epidemic disease that the older generation has not forgotten.

http://www.latimes.com/health/la-he-practice-vaccines-20110808,0,440361.story

Terrafirmascapers.com is my favorite place to play on the internet. It’s a forum for fans of Farscape, my favorite science fiction show ever.

http://terrafirmascapers.com/index.php#1

In fact, they call it downright unethical. Study author Dr. Jan Willem Gorter claims that there is not enough evidence that early screening is effective, citing a 25 percent false positive rate, and saying that there are also autistic children who are not spotted by screening. Because interventions are not proven effective, they also caution against screening. This goes against the recommendations given by the CDC and the American Academy of Pediatrics.

Dr. Jan Willem Gorter cites the South Korean study that showed a mind boggling one in thirty-eight seven to twelve year old children having symptoms of autism as the reason why they did their study, implying that the South Korean study is fatally flawed. The South Korean study, while certainly an outlier and unexpected, can not be dismissed as a flawed study just because the results are unexpected. It needs to be examined on its own merits, so that it can be determined if the numbers are true and if those percentages vary from other countries. If the number of children with autistic symptoms is greater in South Korea, it would provide an important clue as to where to look to find the cause of autism. It could also be that autism is being under-diagnosed everywhere.

As you might guess, I don’t agree with the conclusions that they have come to from doing their study. First of all, it is based on a review of existing studies. Those studies appear to have been chosen to support the conclusions that the researchers had already reached before doing the study. Secondly, it’s ignoring practical issues such as the fact that an enriched environment is not harmful to any child-that screening would also detect other developmental problems, and that not screening children increases the burden on parents to find out what is going on with their child. If available screening is not accurate enough, then we need better tests. If available therapies are not efficacious enough, then we need better therapies.

http://www.cnn.com/2011/HEALTH/06/13/canada.autism.study/index.html

A Scientist’s Journey into Seeing in Three Dimensions

By Susan R. Barry

I first encountered  ‘Stereo Sue’ in an article by Oliver Sacks about her regaining her stereoscopic vision through vision therapy after lacking it her entire adult life. Fixing my Gaze is a longer, more complete account of her journey from seeing the world in two dimensions to seeing it in three dimensions. This is a journey that started from having strabismus as child. Her crossed eyes were fixed by surgery but her brain had accommodated to seeing only out of one eye at a time, since the two images could not be coordinated. As an adult, vision therapy allowed her to use both eyes together and gave her depth perception, much to her wonder and delight.

What might be the most interesting to parents is the amount of trouble this relatively small and unimportant disability caused her in life. With twenty-twenty vision, she still ended up mistakenly put in the slow class in school, and had trouble riding a bike, driving, and playing sports. Various aspects of her life that one would not normally associate with the ability to see depth were affected, and changed by her new found ability. It is a book that is a testament to how well vision therapy works, and how plastic the brain can be.

Fixing My Gaze: A Scientist’s Journey Into Seeing in Three Dimensions

There is a study that has been getting a lot of press lately. It has been touted as showing that a poor diet causes ADHD, or that diet is more important than medication in treating ADHD, as the very poorly chosen headline in the NPR article about this study states.  The problem is that the study doesn’t say those things at all, and in fact only shows that if children were given foods that are considered high IgG foods (according to blood tests given the children), or low IgG foods, it made no difference in behavior.  In other words, the children were given a low allergy diet (rice, white meat, vegetables) for a few weeks, and then foods that they were expected to be allergic to were reintroduced to some, and foods that they were expected not to react to were given to others. According to the study, most of the children’s behavior improved on the restricted elimination diet and the children whose behavior improved on the diet worsened when other foods were introduced. The conclusion that the study came to is that IgG testing was not a valid way to find out what foods might be causing the problem. This is what the study was designed to test.

In reading comments to articles about this study, I can see that a lot of people feel vindicated. They have always told us that a bad diet causes it, whether that diet is full of artificial colors and flavors, sugary foods, or milk and bread. They may not be aware that the control group of children-the children that were fed the same diet during the length of the study-were given instructions on a ‘healthy diet’. Those instructions are not included in the study, but you can be pretty sure that they aren’t instructions for a junk food diet.

Dr. Lidy M. Pelsser, who conducted the study, comes to the conclusion that a restricted elimination diet is a valuable tool to discover what is causing ADHD. This is largely based on teacher’s reports, according to interviews with Dr. Pelsser, who were flabberghasted by the change. This conclusion is unfortunately also not valid, as the only blinding used in the experiment is whether the foods that were reintroduced were low or high igG. The only way to tell whether the child’s behavior changed is to have observers using standardized criteria who are not aware of which diet group the children were in. Teacher’s and parent’s reports could not be used, since of necessity they would have to follow the diet. Lack of outside observers could also be why the children were perceived as relapsing under the re-introduction of foods,  regardless of what those foods were, llsince the children and those around them believed that the diet was working.  They did not know if the children were supposed to react to the new foods or not, so saw them as relapsing without the diet. There is nothing in this study to eliminate the placebo effect, which is as powerful on those around the children as it is the children themselves.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2810%2962227-1/fulltext

I highly recommend my friend Auna’s blog if you’re in for a little light reading about life with five (count them, five) children, all boys. It’s sometimes poignant, sometimes funny, and always entertaining.

http://flyingdiapers.blogspot.com/