Feeling Guilty Over Causing My Child’s Disability

Recently, I was reading this review of Toni Braxton’s new memoir, and the reviewer appeared shocked that Ms. Braxton attributed her son’s autism to God’s payback for a prior abortion.

I don’t want to get into a discussion about God, and whether He would cause a child to suffer over a parent’s alleged mistake, but as the parent of a child with many special needs, I blame myself all the time.

I’m intelligent, and educated, and I have done much research and reading on the subject of mental illness. I have spoken to experts. I “know” that the fight I had with her father didn’t cause my daughter’s disability. I “know” that the single cup of tea I had when I was pregnant, didn’t cause it. I “know” that although I wasn’t as good at giving time-outs for bad behavior, an occasional lack of discipline didn’t cause it.

And yet….I can’t help but wonder if there wasn’t something that I did, or that I didn’t do, that made my child suffer. I “know” it is ridiculous, but it is also human nature for parents to blame themselves, despite being blameless.

So, I may not agree with Toni Braxton, but I understand where she is coming from.

There is a Special Place in Hell

Four employees of a Long Island group home have been fired and charged with endangerment for pitting two disabled individuals against each other, according to Newsday and News 12 Long Island.

Cellphone video of the fight shows the four workers laughing.

I think there is a special place in hell for those who are cruel to the helpless — to children, or animals, or, in this case, the developmentally disabled. No doubt that is where these “aides” are headed. They won’t get any sympathy from me.

Sandy Hook and Mental Illness: No Easy Answers

The intense grief we feel for the victims and families of the Sandy Hook Elementary School shootings, has ignited, or re-ignited, two of our great national debates: the obvious one about gun control, and a less obvious one about the nature and treatment of mental illness.

(Photo credit: DON EMMERT /AFP/Getty Images)

As yet we do not know the exact nature of the illness affecting Adam Lanza, the perpetrator of this horrible crime. We do not know what efforts were made at evaluation or treatment. Nevertheless, the debate is on.

In our 24-hour-news-cycle world, even backlashes have backlashes. One of the first to enter the fray was Liza Long, with this essay entitled I am Adam Lanza’ mother detailing her struggles with her mentally ill 13-year-old son. If you are, as I am, the mother of a special needs child, it is impossible to read Long’s story without emotion.

And the backlash to Long’s story confirmed some of our worst fears, with a distinct air of “blame the mommy” about it.

Parents of special needs children are understandably worried that the school shooting will exacerbate the fear and suspicion already directed at children with autism or other mental illnesses.

This, even though medical experts discount any connection between autism and planned violence.

For some of us, it is an abstract debate over national mental health policy. For others, including myself, it’s much more personal.

Refrigerator Mothers or Aging Fathers?

 

Back in the 1950′s, scientists were certain that autism and schizophrenia were caused by mothers who were emotionally frigid.  Scientists coined the phrase “refrigerator mothers” to describe how the lack of warmth  by mothers affected their children.  There were even movies made about this symptom:  a PBS Point of View, the trailer which is found above.

Scientist now accept that autism is the result of genetics.  A study released by Nature highlights the link between paternal age and autism.

As the New York Times reported in August, as men age, they are more likely to father a child who develops autism or schizophrenia.

The study finds support for the argument that the surging rates of autism are partly caused by the increased average age of fathers.  It has long been known that having a baby when a woman is older increases the rate at which a child is born with Downs’ Syndrome.  Surprisingly, no correlation  has been found between the age a woman gives birth and higher rates of autism and schizophrenia.

Clearly, more research is needed.

More Research Needed for Teen Autism Treatments

Most of the research in autism treatment and prevention is aimed at young children. Early intervention is best and most helpful, but as the autism population ages, so must treatment solutions be aimed at older children and young adults.

As the Huffington Post points out, a new government report confirms that there is little scientific evidence that any of the treatments or interventions used in older children or young adults have any efficacy.

The lead author found there was a “dramatic lack of evidence for any kind of interventions.”  In my reading, however, the study did not say the interventions did not work, only that there was no evidence.

More research needs to be done.  We need to know if the interventions currently being used to help young adults enter the work force are effective, and if not, how we can help those young adults become productive members of society.

A Kardashian I’m Proud to Watch

At the risk of losing the respect of many of my readers, I have to admit I’m a closet reality show junkie.

And not just any reality show.  Last night I was watching “Khloe and Lamar,” when I stopped paying my usual half attention and took notice of the story line.  Rob, , the lone Kardashian brother, was cleaning a phone seven times.  And then he was shutting off a light switch 7 times.   And as his stress progressed, we watched him driving around the block several times, certain he had struck an animal.  Classic OCD symptoms.  So far in his life, it hasn’t stopped him from functioning normally, but he could not stop thinking about the animal he had not hit.

As the mother of a child with OCD, I can attest to just how disabling this disorder can become.

Kudos to Rob Kardashian for being willing to expose his bout with this disorder on national TV (even if I am the only person who will admit to watching)

Self -Determination Through the Eyes of a Client

I recently had the pleasure, on my radio show Special Needs Long Island, to meet Mandy Shenkman, an individual with developmental disabilities who works with The Center for Family Support, an organization that, in part, helps people with developmental disabilities work within self-determination.

According to the Self Advocacy Association of New York State (SAANYS) (another recent radio show guest),“Self-Determination (SD) is an idea that came from people with developmental disabilities and their families who wanted more control over their supports and services. While SD can be achieved in many ways, one important way is through a new option offered by OMRDD called the Self-Determination Pilot Project.”

Mandy Shenkman, a self-determination client of The Center for Family Support, had this to say:

I’ve been with CFS for 11 years.  Linda and Mary are my wonderful support team; they believe in me.  11 years ago Linda was the only MSC who believed that self-determination was real.  She went through the struggle of getting me approved. Now, more and more people feel that self-determination is for them. Linda and I were the pioneers. Mary knows that self-determination provides me with choices on how to live and work in the community. Having choices gives me freedom and control.  When I was unhappy with one of my life coaches, Mary helped me fire her. I don’t think I could have done that without her support.

I am so proud to be a Grassroots Presenter in the New York State Self-Advocacy Association. I talk about my life at conferences, training programs, colleges and on the radio. Linda and Mary are my agents.

Mary works with me each month to complete the paperwork for Self-Determination. Linda makes sure I am living a full and active life.

I’ve been working 2 or 3 days a week since 1998. I wanted to add another day to my work week.  My supported work agency refused to help. Linda and Mary respected my request. Their efforts to find me another job were successful.  I love all my jobs.

Mary and Linda are my teammates, my partners, my Circle of Support and my friends. I am lucky to have them.

Will New Autism Definition Affect Your Child’s Services?

Although the American Psychiatric Association has been working on its revision of the DSM (the Diagnostic and Statistical Manual of Mental Disorders) for several years, a new study by world-renowned expert on childhood mental disorders, Dr. Fred Volkmar, has brought the concerns expressed by the autism community back to the forefront of discussion.

At issue are proposed changes to the definition of autism.  According to the New York Times, many experts expect that the criteria for a diagnosis of autism will be narrower, but it is an open question as to how sharply.

Dr. Volkmar, the director of the Child Study Center at the Yale School of Medicine, believes the definition is going to narrow the diagnosis  so much that it will adversely impact many high-functioning autistic persons.  This in turn, may very well affect the ability of many highly functioning autistic people to get the services needed in schools and other settings.

Differing Viewpoints

According to many news source, including Long Island’s own Newsday, the panel of experts charged with revising the guidelines strongly disagree with Dr. Volkmar’s analysis. Additionally, two other field trials, one at Baystate Medical Center in Springfield, Mass., and one at Stanford University in California, also found that the new definition won’t greatly change the volume of autism diagnoses.

The Washington Post interviewed Geraldine Dawson, chief science officer of Autism Speaks, a national advocacy organization.  While you can read the full interview here, she recommends waiting until the full DSM changes are released, and even then, she advises that we will be unable to see how these changes will affect those seeking diagnosis until it has been in effect for a while.

I believe this is the best approach.  As Dawson states, the DSM needs amending.  There are far too many distinctions among different autism types, with very little difference in treatments.  All will now fall under the umbrella of autism spectrum disorders.