Something To Ponder, Reason for Hope

I had seen commercials on television a while back indicating that some 1 in 166 children are diagnosed with autism, while a CDC report issued earlier that year indicated the figure was actually closer to 1 in 150 children.

Startling, really.

Autism has touched me personally in only a small way and is one of those subjects I admit to having a painful lack of knowledge. Outside of a cousin I have met perhaps twice in my life (lives in California), an ex-boyfriend's brother with mild autism, and a stepdaughter (also several states away) who also suffers severe developmental delay and mental retardation (the reason attaining diagnosis was difficult, her symptoms being attributed to the other conditions), I have little experience with it and, unfortunately, a topic only briefly touched on in psychology and even pathophysiology courses in college.

I had no clue that some individuals diagnosed with this unfortunate disorder have recovered from it. I had learned there were structural differences in the brain, so now I am left wondering what led to this recovery and - prayerfully - if those structural anomalies have also been reversed. If not, is there a chance the autism could re-develop? Per the article, scan images are still being analyzed.

In any case, I will be highly interested in seeing the outcome of this new research. How amazing it would be to be able to offer these people a "second chance" and/or reduce the incidence of children being diagnosed!

Raising Awareness: Shriners Hospitals for Children

I recently received and read a newsletter for the Shriners Hospitals for Children, and I was amazed at the strength and courage demonstrated by the child patients' stories portrayed and overwhelmed at the depth of compassion and generosity of child donors' stories.

The Shriners Hospitals for Children are located across the United States, with facilities in Canada, and they help children no matter what their parents' financial status. Treatment is provided for children needing orthopedic care and burn treatment, spinal cord injuries and burn care. Investing in the future of our greatest natural resource - children - The Shriners enshrine an ideal we should all strive toward.

You can visit their website for more information, from applying for treatment to making a donation.

Raising Awareness: Hands-Only CPR

In the event that an adult suddenly collapses in front of you, American Heart Association advises that Hands-Only CPR be administered, even if you have no formal CPR training. This involves chest compressions only, without mouth-to-mouth resuscitation, and can greatly increase the victim's chances of surviving a cardiac arrest.

About 94 percent of sudden cardiac arrest victims die before reaching a hospital, the group said. Up to 80 percent of sudden cardiac arrests occur at home, it added. Brain death begins four to six minutes after a person suffers sudden cardiac arrest if no CPR or defibrillation is given.

Raising Awareness: Autism

I've recently seen commercials on television stating that a child's chances of developing autism are about 1 in 166; according to CDC report earlier this year, that figure has risen to about 1 in 150 children.

What is autism? There are several disorders which fall under the umbrella of autism spectrum disorders, including classical autism, Asperger syndrome, Rhett syndrome, and others. These are usually determined by the behaviors the child exhibits in conjunction with a number of tests to rule out other causes and can be mild to severe. These children generally have limited social functioning and language skills, but we all need to remember that this does not necessarily mean they are cognitively impaired. A few common indicators of autism, which should be discussed with the child's pediatrician during the various stages of a child's development, include:

• Indifference to or refusal to accept physical contact (i.e., cuddling).
  
• Failure to respond to name and/or poorly developed receptive/expressive language skills.
  
• Intent concentration on a single object while ignoring other surroundings.
• Self-injurious behavior (head-banging, picking) or repetitive motions (rocking, spinning).

Early diagnosis and treatment is key to assuring these children have the best chances for a more normal future. There is no cure for autism, but we need to do everything in our power to give them that chance. Family history plays an important role in diagnosing autism. Other possible causes of some autism-type behaviors need to be ruled out, such as hearing impairment or chromosomal abnormalities. The most important part of treatment for an autistic child, once a diagnosis is ascertained, is refusing to give up on them. These are frequently normally cognitive individuals trapped inside a mind that will not allow them to express themselves in a way that others can understand.

Raising Awareness: Deaf or deaf?

What is the difference between deaf and Deaf? Is there really a distinction? Why, YES, there is!

I could not explain it any better myself than does the Wiki article on Deaf Culture, but in a nutshell, "Deaf" is a means of identifying oneself with the Deaf Culture, regardless of your hearing ability, and "deaf" refers to the medical delineation of hearing loss.

There are many terms floating around in our society, used mostly because of lack of knowledge, that are highly offensive to many Deaf individuals:

• Deaf and dumb (or deaf/mute): "Dumb" means an inability to speak, i.e., mute. Most Deaf are indeed able to speak, and many do so very well.
• Hearing impaired: Impairment refers to disability and has negative connotations. While hearing people consider deafness a disability, it is ONLY a disability because we as hearing individuals force it to be so. We fail to learn to communicate with Deaf individuals (but we will take a French or Spanish or German class in school), we refuse to give them jobs because we will need to ensure they have accommodations for their differences, etc. The only thing that makes Deaf people different in most cases is their means of communication; they are not freaks. After all, would you consider a visitor from a foreign country who speaks no English to be impaired or disabled just because of a language barrier?
• Deaf = mentally retarded: I ranted about this elsewhere, but all Deaf people are not cognitively impaired, nor are all cognitively impaired people deaf, so one does not equal the other. It is a stereotype that we need to toss out the window.
• Deaf = hard of hearing: Deafness in and of itself generally refers to a range of hearing loss that is severe to profound and may (but more likely may not) be "corrected" with the use of hearing aids. Hard of hearing individuals, on the other hand, generally have a range of hearing loss that is mild to moderate and CAN supplement their residual hearing with hearing aids.

There are other misconceptions regarding Deaf individuals and how to interact with them when their world touches ours, especially in health care. Many health care providers are unaware of their responsibility to ensure they effectively communicate with Deaf patients, preferably via a certified sign language interpreter. Many believe they can get away with "writing notes." This is a faulty assumption in that many hearing individuals fail to realize that ASL (the primary language of most Deaf) is NOT equivalent to English and that the average Deaf person reads at approximately a 4th grade level. Therefore, one cannot expect to effectively communicate an INFORMED CONSENT to someone who is not operating on the same communication level, if they refuse to use a sign language interpreter and ensure that the other party is truly understanding and giving consent to what they understood the information to mean.

The same goes for lip reading. While some Deaf can do this, many cannot. This is a skill that takes years to master and even then can lead to misinterpretations of what was said because of how the speaker moves his/her mouth, whether or not they have a beard and/or mustache, etc.

A great article explaining some of the common misconceptions regarding Deaf can be found at Where do we go from Hear? I particularly like the title, "Deaf People Are Contagious."

Raising Awareness: Syringomyelia

Syringomyelia is a condition in which a cyst forms within the spinal cord, usually associated with a Chiari malformation, sometimes associated with trauma, sometimes occurring for no apparent reason at all (idiopathic). It is a normally progressive degenerative disorder causing pain and/or weakness in the extremities, headaches, sexual dysfunction, or loss of bowel or bladder control among other symptoms.

This is considered a "rare" condition, and doctors in general seem rather uneducated about it, its causes, effects, and course.

If you or someone you love suffers from this debilitating condition and you need more information, please visit the American Syringomyelia Alliance Project. If you have questions and want answers or just need a shoulder to lean on, there are numerous fine people you can connect with on the message boards.

Please help us find a cure.

Raising Awareness: Child Protective Services

I have seen numerous stories in the news lately about children routinely abused and even murdered by their "parents" or other caregivers, and in many of these cases CPS has been involved in these family's lives. Oftentimes the children have been removed on prior occasions, only to be returned to the abusive situation and later murdered. In many forums, people who are justifiably angry point a finger at CPS and the court system for allowing it to happen.

There is a reason for this, and in many cases the CPS worker's hands - and the judge's - are tied. They have no choice, based on laws at state and federal levels: Laws that push for family "reunification" and laws that push for termination of parental rights - all with the intent of getting children out of the foster care system as expeditiously as possible.

Do social workers create the laws they are bound to follow? NO.
Do judges create the laws they are bound to enforce? NO.
Who creates these laws? THE LEGISLATURE.
Who can change the law to protect children from being abused, neglected, sexually assaulted, tortured, maimed, and murdered? THE LEGISLATURE.

It is painfully obvious that "the system" does not work and screaming for change, but pointing fingers does nothing to help. Change must start at the top, with the men and women we elect to represent us. They have an amazing opportunity to save the life of a child, ordering closer monitoring of "at-risk" children, preventing return to abusive situations, ensuring conditions of return are met, and providing a punishment appropriate to the crime that will not leave the rest of us scratching our heads and wondering WHY? Contact your legislators, tell them this is unacceptable, demand to be heard and demand change.

Man pleads guilty to attempted rape of 1-day-old daughter

Two-year-old beat to death, prior removal from home

Woman kills 2 children, hides bodies under apartment, prior termination of rights to 2 children

This is a small sampling (what is caught and reported upon) of crimes against another human being - one who has lost their rights to LIFE, LIBERTY, AND PURSUIT OF HAPPINESS.

Think about this single statistic and its immense gravity (and it is already more than 5 years old): "Recent studies show that while the statistics on most other forms of violent crime are dramatically decreasing, reports of child abuse and neglect have risen since 1993. In fact, it is now believed that every day, three children are killed as a result of abuse or neglect in this country.- Prevent Child Abuse America, 2001." For more statistics, please see YELLO DYNO.

We cannot allow this to continue. Please do not disengage from what is happening all around us, but be proactive and let your legislators know that they need to take action.

Raising awareness: Deafness

There are many types and causes of deafness. It may be hereditary (genetic), congenital, or acquired; prelingual (before learning spoken language) or postlingual (after). It can be caused by viruses or other infections, medications, genetic defects, or as part of the aging process. Sometimes it is idiopathic, meaning it happens for no reason at all (that can be determined).

I am a Hearing woman married to a Deaf man, and between us we have Hearing, Hard of Hearing, and Deaf children. Ours is a special world, filled with an amazing array of sights and sounds, thoughts and feelings, playfulness and pain. Interactions with the world outside our comfortable circle often leave the impression that few have adequate or accurate knowledge regarding this physical trait, frequently subjected to varying degrees of misinformation. After all, it IS a hearing world and deafness is different, something to be feared, avoided, or corrected; many of us, having had a full range of special senses throughout our lives, have a difficult time imagining living in a world of silence and what may be missed or lost (hearing your child's first spoken words, first cries, first giggles).

A number of times while in public with my children, we have been approached by kindly (usually elderly) strangers telling my son how cute he is and how beautiful his curls are, asking him how old he is, or just chattering away at him as one normally would do with an adorable toddler. He does not respond, and a quizzical look comes over the stranger's face. He just stares, a look of confusion shot in my direction. I tell my son what has been said and he flashes a 1000-watt smile, and that stranger almost always backs away a step or two. "He is Deaf," I explain; 99 times out of 100, I hear in response "I'm so sorry. Can't they fix that?"

My son is Deaf, not "broken." He does not need to be "fixed." He is capable of communicating his needs and wants, albeit in a language many people do not know. My son "speaks" American Sign Language (ASL). How he handles his communication with the outside world will vary with time, life-altering decisions reserved for when he is old enough to express his own intents and desires (i.e., cochlear implant, lip-reading, speaking, signing, etc.) and he will be exposed to and allowed to explore all of his options, in order to make an informed decision.

Another common myth I have encountered is that "deaf = retarded." Not all Deaf are mentally handicapped and not all MH are deaf; therefore, they do not equate. Most Deaf have normally functioning minds and bodies, the only difference between "them" and "us" being that they do not hear and use a different language to communicate. They go to school, drive, and even use a telephone - all the things hearing people do; they attend and participate in theater, concerts, and motorcycle rallies; they become teachers, lawyers, and doctors, and one was even a famous composer; they have families and lead "normal" lives.

Not all Deaf can read lips or converse in spoken English, but not all Deaf are mute. Hearing aids and cochlear implants are not a "cure" for deafness. Many Deaf do not consider this trait a "disability," rather a "difference." For many, being Deaf is part of their identity, with an entire Deaf "culture" (community), and it is sometimes difficult for a hearing person to gain acceptance into that circle.

Significant barriers stand between "Hearies" and "Deafies," when there is a lack of knowledge of and about ASL, further separating them from the hearing world in both communication and acceptance; this occurs on both sides. I often hear "I always wanted to learn to sign," yet when an offer is extended to teach it (for free), 500 excuses are returned as to why that offer cannot be accepted. I find this not only frustrating but irritating. IF YOU DO NOT MEAN IT, DO NOT SAY IT.

My goal is to raise awareness in the hearing community, to bring down barriers separating our worlds so they will feel more comfortable in ours and, in turn, more willingly accept us into theirs.

ASL is a graceful language with its own grammar and syntax, its own structure and form, and an amazing experience to see and to participate in a conversation with ASL. It is a visual symphony, melodies in motion, and after having seen and felt it, your whole body sings its rhythms.

For a glossary of terms related to deafness, please see MedicineNet.com.