Archive for August, 2011

This is a follow-up to my blog called Test after test soon leads to torture.  Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described some of the other experiences we had while trying to identify a diagnosis.  This included blood tests, MRI’s, EMT, medications, etc.  

As I mentioned in an earlier post, over the years my son has had  seven or eight long-term video EEGs at two different Children’s Hospitals and at the Cleveland Clinic.  The procedures for  the test were pretty consistent from all of the clinics and included putting on the electrodes, capturing the brain activity via the EEG, being video taped during the test, trying a few different strategies to trigger seizures, and eventually waiting for the results.

The long-term EEGs were torturous.  My son was only 3 1/2 years old when this all started.  He screamed when they marked his head for placement of the electrodes.  He panicked when they brought out the brown glue bottle for adhering the leads to his head.  Then as the test was being conducted and as the days went by he lost patience and did not want to remain on the bed in sight of the video camera.  Cleveland Clinic had a set up where he could momentarily unplug from the EEG and take some time to walk around, which was a big help for getting through the test.  They even had a McDonald’s on site which was a big treat for my son.

During the test my son would complain about the gauze that was wrapped around his head which was used to keep his hands off of the electrodes and as extra support for the electrodes themselves.  He said it was making him hot.  Then after a day or two, he would begin picking and scratching at the electrodes.  He was especially sensitive to the ones that were placed behind his ears or on his forehead.  Picking at the electrodes would sometimes reduce their connectivity and the technicians would re-glue and place the electrodes back on.  Besides itching there were times my son complained they hurt.  When we were done with the test and when we took the electrodes off, his forehead had sores where each lead was glued.

The other big obstacle to overcome, especially in our earlier days, was resting with lights on at all times.  Eventually the technology solved this, but in the beginning the lights in the room had to be on so that the video would clearly capture all of the activity.  It was a struggle to get my son to sleep with the lights on.  After having a couple of long-term EEG’s, I learned that the best way of dealing with this was to lay beside him in the bed which comforted him and then he would fall asleep.  I no longer cared if I was on the videos.   The hospital itself was not concerned with the lack of sleep because sleep deprivation sometimes triggers seizures.  Such was not the case for us.  Besides getting my son to sleep, I, as the parent, got no rest.  A long-term video EEG meant that I would get little or no sleep for four or five days.   It was a struggle, but you endured it.  You had to.  It was a sacrifice that may help your child.  In more recent years there is no longer a need to have the lights on because they use video cameras that work in the dark.  What a relief that was.

As a parent you want to relieve your child from any agony that they may be experiencing.  But as a mom desperate for a diagnosis, I prayed that he would have a seizure.  The frustrating part for us was that during many of these EEG tests we were not having the same experiences with the seizures that we were having at home.  At home my son was having numerous seizures every day.  They always began within twenty minutes of waking in the morning.  It was consistent.  It was so consistent that I had a video camera in place aimed at his favorite sitting place and I was able to tape his seizures.

Over time, we learned that his seizures were triggered by lights, more specifically changes in lights.  Seizures happened as we drove to daycare with bright sunshine.  Or seizures always happened in the grocery store in the fish / seafood section.  My theory for this was that this area of the store always had fluorescent bulbs that were placed lower than the other lighting in the store.  The same happened at restaurants when we sat at a table that had a low hanging light for the table.  He would have seizures when we would come out of a theater after watching a movie.  He also had problems in the winter on those bright sunshine days and the snow has that sparkly effect.  Seizures also happened from car lights when driving at night.  Emergency vehicle lights also trigger a seizure.

So my theory in the hospital during the EEG was that there was not enough change in lighting to trigger the seizure, especially when they had the lights on 24 hours per day.  Flashing a light, such as a strobe, in his face did not do the job.  I eventually convinced the neurologist and the EEG technicians that they needed to let me control the environment, particular the lighting. It wasn’t easy convincing them of this because it was not “normal protocol” for the test.  Each time there was a shift change I had to convince them to let me control the environment.  Finally I had the neurologist put the instructions in my son’s file so that I could refer them.

I knew I had to assimilate the environment to be like it was at home.  The most consistent time when he had seizures was within 20 minutes of waking up in the morning.  He needed to sleep in a dark room and wake to daylight in the morning.  We finally captured the seizure activity within twenty minutes after waking.  My theory was correct.

It was a big relief to have captured the seizures on EEG.  We learned that he was having seizures in the frontal left lobe of the brain.   It was sad to say that I was happy that we had some evidence that we could point at.  It wasn’t good news, but it was information that we didn’t have before, which would bring us much closer to reducing or eliminating the seizures.  This happiness was short-lived because knowing the location of the seizures did not necessarily point the neurologist to what medication to use.   Since medications were not working at first we tried one more thing, a VNS.

In the near future I will share our experiences with the Vagal Nerve Stimulator and its impact on my son’s epilepsy. Watch for the post on Twitter, or come back to check this blog.

To Be Continued . . .

Dennise Goldberg, of Special Education Advice (@SpecialEdAdvice), has provided  a list of 50 Special Education Twitter Feeds that she is suggesting for people to follow.  The list includes Parents, Educators, Advocates, Attorneys, Therapists and National Organizations.  Tweets from these advocates can keep you up to date on the world of Special Education.
To view this list go to:  50 Essential Special Education Twitter Feeds  specialeducationadvisor.com/50-essential-s…

Suprisingly, I have been included on this list, known on twitters as @WI_Snowflakes.  My experience with the topic of special education is a bi-product of my life with my son who has a number of chronic health problems and has learning disabilities.  On twitter I share any new methods or tools that can help children with learning disabilties.  I also occasionaly share some of our personal experience dealing with specific topics such as IEP’s, Dyslexia, Dysgraphia, etc., and working with the US school system.
You can follow me on twitter at @WI_Snowflakes.  Or you can visit my blogs:
Snowflakes, which is a blog mainly describing our personal experiences, https://snowflakesofwinter.wordpress.com/
News that should matter, which is a blog providing links and exerts of research news on topics such as special education, epilepsy, diabetes, Tourette Syndrome, Sensory Processing Integration, and Anxiety, http://foundnewsthatmatters.wordpress.com/

Mind Flurries, which is a blog with my personal poetry that expresses some of my feelings as we make our way through life,  http://mindflurries.wordpress.com/

 

A special thanks to Denisse.  I am honored to be included in this list.

This is a follow-up to my post called Our Experience With the Short-Term EEG for Diagnosis of Epilepsy.   Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described my son’s short-term video EEGs and some of the frustrations we faced.  I also discussed the requirement for perseverance and to trust your instincts.

As I have said, there was a lot of debate about what these events were that my son was having.  My son’s videos of his events were looked at from doctors all over the country.  They were also reviewed at a symposium for practitioners who specialized in movements disorders.  The reviews ended inconclusive.

We had seven or eight long-term  video EEGs at two different Children’s Hospitals and at the Cleveland Clinic.  You may wonder, why so many.  Well my son’s epilepsy was not typical and it appeared there were multiple kinds of seizures going on.  The majority of his seizures started with facial oriented seizures.  They included odd eye blinks, head jerks and eventually body jerks.  One of the neurologists referred to this string of seizures as the Jacksonian spread.  Jacksonian seizures are movements that start in one muscle group and spread systematically to adjacent groups, reflecting the march of epileptic activity through the motor cortex.  In my son’s case the seizure would affect the muscles by his eyes, the side of his mouth and onward.

As a part of the diagnosis process they ran numerous blood tests.  They were trying to see if there was some genetic issue or other neurological disorder.  Eventually it took all my strength to hold my son down so that they could take the blood tests.  As he sat on my lap, I wrapped my legs around his legs and then held his arms as the technician took his blood.  He hated it.  I hated it.  To this day he is terrified to give blood tests.  There was a time in the hospital when they were taking some blood and something went wrong and all of a sudden blood was squirting everywhere.  It totally freaked him out.  It was an accident but, who could blame him from being frightened.

One of the blood tests that they took was checking for metals in his system.  They did this blood test many different times and each time the results came back with the observation that there were unidentified “inclusions” in his blood cells.  I was a little frustrated because something was not right but the doctors did not know what the inclusions were.  In the end they kept taking the test and switching labs until they got the results they wanted.  To this day I don’t know if this was evidence of something that was going on with my son.

During this search for a diagnosis, my son also saw a couple of different ophthalmologists.  When my son has a seizure that affects his eyes and face he complains that it hurts, which is why they sent us to ophthalmologists.   All of the tests with the ophthalmologist did not turn up anything that explained the seizures or the pain.  They did diagnose him with a severe astigmatism.  So he wore glasses from age 3 1/2 until he was 7.  At age 7 the ophthalmologist said my son’s eyesight was near normal and he did not need to wear glasses anymore.  I really don’t understand how you can go from a “severe” astigmatism  to normal within three to four years.  Later still when he was ten, an ophthalmologist discovered something unusual at the back of one of his eyes.  In the end they concluded that it was scar tissue.  Still, I don’t know if this has anything to do with what was going on with my son’s eyes.

We had done so many tests that I could not bear take my son to the doctors.  One of the tests that they did to test for neuromuscular diseases was an intramuscular Electromyography (EMG).  An EMG is a is a technique for evaluating and recording the electrical activity produced by skeletal muscles.  It evaluates the potential generated by muscle cells when these cells are electrically or neurologically activated. To perform intramuscular EMG, a needle electrode or a needle containing two fine-wire electrodes is inserted through the skin into the muscle tissue.  The needle was long, really long.  Like three inches long.  With no anesthesia or pain reliever they inserted this needle into the calve of my son’s leg.  He screamed in pain when they did it.  The technician encouraged him to hang in there and told him it would be over soon.  I held onto him tightly because I didn’t want him to go through this again.

It was torture.  It broke my heart to see him go through this pain and hysteria.  It was clear he didn’t understand why they were hurting him, and he begged me to help him.  He was only four at the time.  The memory of this is vivid in my mind.  It took everything I could to not break down and cry.  In fact, I did cry.  I knew that I had to remain strong for him and if I started crying in front of him it would only make things worse for him.  I really don’t know how this happened, but when I cried the tears only came from one eye, the eye that was away from him that he could not see.  In the end we got through the test which turned out to be normal.

At one time we thought perhaps the seizures were evidence of high or low blood glucose.  My son’s seizures started every single morning within twenty minutes after waking up.  There was a theory that this may be an indication of his blood glucose being off.  So, for five days we woke up and before we ate I took him to our pediatrician and they would test his blood glucose.  I didn’t have the heart to do it myself.  In the end it turned out to be normal.  Oddly, down the road my son’s blood glucose was going to be an important event in our lives.

Over three years my son had three MRI’s.  For the first MRI, they gave him a rectal medication that knocked him out.  Once again I had to hold him down.  The doctor and nurse assured me that he would not remember the administration of the drug or the MRI.  In the end they were wrong.  A short time after these tests, I took my son to a psychologist because he was beginning to show signs of being traumatized.

A traumatic event involves a single experience, or an enduring or repeating event or events, that completely overwhelm the individual’s ability to cope or integrate the ideas and emotions involved with that experience. The sense of being overwhelmed can be delayed by weeks, years or even decades, as the person struggles to cope with the immediate circumstances. (Wikipedia)

At the time I had no idea what a huge effect all of these tests had on my son.  Initially, he exhibited wild, careless behavior.  It got to the point I had to constantly hold his hand because he would bolt off, unaware of any danger around him.  On several occasions I caught him just in time when he was headed toward a busy roadway.  He started showing fits of anger.  Anything could set him off.  There were times he was deeply sad.  You could see it in his face and his eyes.  He also had a real hard time falling asleep and had numerous nightmares when he finally did sleep.

The psychologist, in a playful environment, worked with my son to re-enact what was upsetting him.  He investigated what my son thought of  doctors.  On our third visit this doctor had created a crude replica of the electrodes of an EEG.  Then he asked my son to show him what the doctors had done to him by using a doll.  I was shocked about the details that my son remembered.  At one point he poked the doll on the bottom.  It was clear to me that he remembered them giving him the rectal Valium.  The doctors were wrong.  He remembered everything they did to him.  To him he was being tortured.  He didn’t understand what they were doing to him and why.  He had no understanding about his epilepsy.  He didn’t even have the language skills to talk about what was happening to him.  In years to come, I started to see the impact of this trauma.

Prior to my son’s first seizure I was very sensitive about using drugs.  I had taken the position that drugs could do harm, especially since there are few long-term tests for medications.  Upon the arrival of epilepsy, I had to let down my guard.  I could not fix my son, no matter what I did.  I needed to trust the doctors, even though it was hard.  It wasn’t easy.  It still isn’t easy.  But I was desperate to find out what was wrong with my son, and then hopefully find a cure.

The neurologists were running test after test as a means of eliminating things from the possible diagnosis.  My son was a guinea pig enduring test after test.  At one point we decided to try medication that is used for tics.  They put my son on  clonidine, which is a medication usually used to control blood pressure, but can also be used to control tics disorders.  After trying it for several months we also tried liquid Valium (diazepam), which also did not give him any relief from the eye movements.

Over time the neurologist prescribed many types of antiepileptic medications.  In four years my son had been on:  Clonidine, Valium, Tegretol, Depakote, Lamictal, Keppra, Topomax, and Clorazepate.  Some of the side affects of these drugs include (Drugs.com):

  • Clonidine:  Constipation; dizziness; drowsiness; dry mouth; headache; nausea; tiredness; trouble sleeping.
  • Valium:  Drowsiness; incoordination; muscle weakness; tiredness.
  •  Tegretol:  GI upset, weight gain, blurred vision, low blood counts, low blood sodium (hyponatremia). Carbamazepine causes a rash rate of a few percent, sometimes even the dangerous rash called Stevens-Johnson syndrome
  • Depakote:  weight gain, tremor, hair loss, GI upset, blood count decreases, hepatic or pancreatic injury, bone weakness over time (osteoporosis)
  • Lamictal:  dizziness, double vision, headaches, coordination problems, blurred vision,  nausea, vomiting
  • Keppra:   dizziness, fatigue, insomnia, but the more troublesome problem can be irritability and mood changes
  • Topomax:   thinking and memory problems, renal stone,  glaucoma (increased eye pressure) and weight loss
  • Clorazepate:  Blurred vision; clumsiness; confusion; dizziness; drowsiness; dry mouth; headache; lightheadedness; nervousness; stomach upset; unsteadiness; unusual weakness.

The routines for going on a new medication and coming off a medication is exasperating.  Each drug requires that you slowly bring up the dosage over time.  In fact one of the drugs had a rash side effect which could lead to death if administered too fast.  At the time many of these drugs had not been tested for children, nor were approved for children.  In addition, most of these drugs did not have a liquid form.  We then had to cut and crush the tablets and put them into something that you could get your child to eat.  One time I asked the pharmacist what he would recommend that I use to mix the drug with, and he would not recommend anything, because the drug was not meant for kids.  So I was on my own, and we used strawberry pancake syrup.  Later on yogurt worked really well.

So for every drug change it meant weeks to slowly decrease his current medication and then slowly increase the dosage for the new medication.  It was tedious.  In the end, most of it did not work.  At one point one of the neurologists thought maybe the seizures were being precipitated by the medications themselves.  So we took my son off all medications for about nine months.  No change.  The seizures did not decrease, nor did they increase.

For over three years my son had every test the neurologist could think of.  We were no closer to a diagnosis than we were the first day he had a seizure.  More than $200,000  in medical bills and we still did not have any answers, and my son was still having seizures.

To Be Continued . . .

Something needs to change. The federal government budget issues impact state government budget issues, which impacts the programs used by the citizens of this country.  In the end we all pay the price for the deficit.  The trend has been:

  1. The federal cuts funding support for a particular program that it couldn’t commit to in its budget without raising federal taxes or cutting some other program.
  2. The  state then needs to pick up the added expense,
  3. but the state can’t afford it without cutting some other program or raising state taxes.
  4. In the end the program loses out.

It doesn’t matter to me which part of the government is having problems funding the program because I end up paying for it either in federal taxation, state taxation or in the experience of a diminishing program.

Education Cuts

This very sequence of events is happening with education today.  In my school district the board of education had to cut $2.163 million out of the budget for the next two years.  Now that may not sound like a lot of money, but our town is small – really small.  We wouldn’t even be considered a suburb of a suburb.  I think the population is about 12,000 people.

Out of this $2.163 million, $500,000 went toward personnel cuts.  This amounted to 8 certified positions, which includes teachers and a counselor, and 36 non-certified position.  The non-certified positions included  media assistants, special education assistants, English as a second language assistants, transportation specialist, custodians, campus monitor, in-school suspension assistant, math assistants and reading assistants.  Let’s take a moment and categorize these cuts:

Infrastructure

  • transportation specialist
  • custodians
  • campus monitor

Support for students having difficulties or learning disabilities or are struggling to get an education

  • special education assistants
  • English as a second language assistants
  • in-school suspension assistant
  • math assistants
  • reading assistants
  • Counselor

Additional education impacts

  • media assistants
  • Teachers

Who is taking the biggest hit here?  Children that are having difficulties in school.  This is infuriating to me because my family is personally affected.  These cuts not only affect the education that a child is receiving, but it is also affecting the teachers (that still have their jobs) ability to teach.  They now have to continue educating with out these critical services.  This now impacts all children.  This gives the teacher less time for each child because she/he can only do so much as one individual. Either the coverage of educational topics or quality of education is diminished.

The children with special needs will be hindered in advancing in education or even worse are just passed on and become the next grade’s problem.  Eventually the student graduates from school and has not learned the basics of reading, math, and language.  Guess what happens to that person when they have to join the rest of us in adult society.  Can they stand on their own?  Will they be able to get a job?  Will they get a job that will pay them enough to actually pay for housing, food, and medical health care?  What is the first thing they will have cut because they can’t afford it?  It is the health care.  Unfortunately many of these individuals have health issues and will not be able to maintain their health because they can’t afford it.  This all becomes a spiral fall to disaster.

On a personal basis my son will be losing access to a reading assistant.  He is already three years behind his peers.  He will also lose his math assistant, which he is also already 3 1/2 years behind his peers.  He will lose help when he is having a medical emergency and needs to have assistance.  Instead his teachers will have to provide all of this.  It is impossible and my son loses. It is not his fault that he has medical problems which have caused learning disabilities and other debilitating circumstances.  It is this “extra” help that is moving his education forward.  Now what do I do? My son deserves an education.  How does he get it? Yes, the federal government did not raise my taxes.  Yes, the state government did not raise my taxes.  Yes, the school board cut the programs that my child needs and in the end he does not get an education.  In my opinion the federal government, and the state government have let me and my son down.  It is not right.  They are more interested in getting re-elected, which is why they don’t want to raise taxes, than in doing what is right.  How about looking for wasted money?  We know it exits.  Why sacrifice my son for a bridge to nowhere?

There are other examples of how budget cuts are affecting our communities.  Our state closed down a visitor center along a major interstate road which coincidentally is located in the middle of the town I live in.  Unfortunately, their method of closing it down was to cover the sign with black tar paper, block the entrance and exit roads, take down the flags, and leave the site in disrepair.  Weeds and grass are overtaking the area.  The building is not being maintained.  So now the Welcome To….. Visitor Center is a big eye sore in my town.  It is kind of hard to encourage people to move to this area or to bring new commerce into a community which has a visitor center that makes the place basically look like a slum.  The government will not allow banks to leave their real estate property in disrepair.  Why is the government allowed to do this?

There is also a small state park in our state located near my home town that the state decided to shut down.  (There is probably more than one.) This park was not a camping park.  Instead it was a picnic and swimming area.  In fact it was a highly used park which often did not have room in the parking lot. I am not happy that they closed it down, but what bothers me even more is how they closed it.  This included taking out the outdoor toilets, discontinuing to have a part-time attendant to sell and monitor the state park stickers, and they ripped out the black-topped roadway and parking lot. Why?  We tax payers not only lost a recreation site, but also had to pay the state to tear up a road that didn’t need to be tore up.  People would have continued using this park without the state maintaining it.  The roadway was not causing them any more money.  What a waste.  It probably cost more money to tear up that road than it did to maintain the park.

I apologize for the griping but this whole process for budget short-falls is not working.  Whether you tax me to pay for a program or I end up paying for the loss of the program it doesn’t matter.  In the end I pay.  If it doesn’t come out of my right pocket then it comes out of my left pocket.  When will government officials wake up and see this?  Why is re-election more important than doing what is right for the citizens of this country.  More importantly when are the people going to get out-raged and use their voting power to set a different trend?

I would also bet that if they were really doing their job and truly managing their expenditures there wouldn’t need to be any tax increases.  That’s their job.  If you take the time to look at some of the legislature that is passed you would be shocked how much money is wasted on pet projects that have no value for the people of this country.  I say, set term limits.  No more this life time career, where the individual gets embedded in the corruption of the system.  No more government officials out of touch with the people they represent.  This may sound crazy, but I think it would solve a lot of issues.  Unfortunately this will never happen because the people who have to change the law are the people abusing their position.  The people of this country need to demand a change.

 “Attention is the key to prevention”

“Don’t take candy from strangers”

“Stranger Danger”

All of us have heard these warnings.  We learned them from school and from our parents.  The problem with these warnings is to a child what is a stranger.  I asked my son, in his early elementary years, how does he tell if someone is a stranger.  He told me it was someone he did not know and he wore ragged clothes and was dirty.  I was a little surprised and explained that a stranger could really be anyone and has nothing to do with their cleanliness or their clothes.  We then went through a couple of examples of who is stranger and who is not a stranger.

Unfortunately, children are at risk of abduction and sexual victimization, and most of the individuals who perpetrate these crimes are not perceived as strangers by their victims.  The National Center for Missing and Exploited Children (NCMEC) has reviewed research findings and its own collected information for the purpose of evaluating long-standing child-protection messages.  It is their intent to provide  a basis for creating more effective messages for children.

It is obvious that young children don’t have the skills to evaluate whether someone is a stranger or not.  Dr. David Warden, psychologist  at the University of Strathclyde, said “No matter how intelligent the child, he or she does not see the world through skeptical adult eyes . . . Children live very much in the present. They can’t foresee someone’s actions or judge their intentions, certainly not at primary school age. They have a very weak understanding of motives, they simply take someone at face value. The concept of stranger danger is difficult, because it clashes with the social constraints on children to be polite to adults. Research suggests that children don’t really know what a stranger is. They feel that once someone tells his name, he ceases to be a stranger.”

On the HBO special “How to Raise a Street Smart Child” the following descriptions of strangers were provided by children.

  • “A stranger sometimes wears a hat . . . sometimes a black or brown jacket and is a guy with a beard . . . some hair and a moustache and some glasses.”
  • “I think a stranger is like . . . a punk rocker that drinks beer all day and sits around in a vacant lot.”
  • “A stranger looks mean and ugly . . . a creep.”
  •  “Big . . . bigger than you, bigger than most people.”

Children also take cues from the adults around them.  If the parents is talking or interacting with someone, they must not be a stranger.  Or, the neighbor near their home is not a stranger, because the child “knows” him.

Who are safe strangers?
Safe strangers are people children can ask for help when they need it. Police officers and firefighters are two examples of very recognizable safe strangers. Teachers, principals, and librarians are adults children can trust too, and they are easy to recognize when they’re at work. But make sure that you emphasize that whenever possible, children should go to a public place to ask for help.

You can help your children recognize safe strangers by pointing them out when you’re out in your town. Also show your children places they can go if they need help, such as local stores and restaurants and the homes of family friends in your neighborhood.

Who are the offenders?
A research study was conducted at a treatment facility for individuals that had sexually assaulted a children (Groth et al, 1978).  The study found that 29 percent of the offenders were strangers to their child victims.  71 percent of the offenders knew the child.  And 14 percent of the offenders were related to the victim.

Dr. Gene Abel of Emory University in Atlanta examined a group of sex offenders and concluded that the typical sexual offender against children is male, begins molesting by age 15, engages in a variety of deviant behavior, and “molests an average of 117 youngsters, most of whom do not report the offense.”  Based on research offenders seek jobs or circumstances that gives them access to children.

The victimization of children has been stressed in our media today.  Nancy Grace of HLN has made a career of talking about abducted children or victimized children.  Based on research most parents and children fear being kidnapped.  In a 1997 survey conducted by the Princeton Survey Research Associates Poll, the top worry of parents is the fear that their child might be kidnaped or become the victim of violent crime. In the same survey, parents’ fear that their child might become a victim of sexual abuse ranked fourth, just behind serious accident or illness (Kantrowitz, 1997).

Armed with a more accurate picture of those who victimize children, we can provide more effective information to families to help parents keep their children safe.  The challenge is to create awareness of the risk faced by children and to avoid incomplete or inaccurate messages.  For generations, our fundamental messages to children have contained three basic premises:

“Don’t take candy from strangers.” As indicated above, in at least two of three cases, the offender is not a stranger in the mind of the child. Usually, the victim and offender know each other, at least casually. Child molesters often seek legitimate access to children and then victimize them through a process similar to seduction. This reality does not make the message wrong, only grossly inadequate in providing protection for children, who need more comprehensive information about the dangers they are far more likely to face.

“Don’t be a tattletale.” One of the most stigmatizing names that a child can be called is tattletale. From their earliest moments, we consciously and subconsciously encourage children not to communicate. Thousands of children are hidden victims, and the key to prevention and detection is communication. Children must be taught that if something is happening in their lives that they do not feel right about or that makes them feel uncomfortable, they must tell somebody they trust.

“You’re just a kid. Be respectful to adults; they know what they’re doing.” With this final message, we face a delicate challenge. All parents want their children to be polite and respectful to adults. Our message is not that we want children to be disrespectful, but that we must empower them to realize that they have the right to say no to those who would abuse their authority as adults. As educational consultant Stephanie Meeghan aptly expresses during many of the training sessions for teachers that she has held since 1988, “We must make children aware that their safety is more important than good manners.”

I researched various websites for useful information and contact information on this topic.  The following is a compilation of  that information.  Every parent should be aware of these services and contacts.

Child safety tips:

  • Check out babysitters, suspicious people in the neighborhood and anyone you hire to work in your home. Many states list convicted sexual predators on special Web sites. You can obtain information at the FBI’s Web site or by calling your local FBI office. Get references of people you want to hire and be sure to check them out.
  • Never leave garage door openers or spare house keys “hidden” in spots where they might easily be found.
  • Tell your children that if someone stops next to them in a car, tell them to run away toward the rear of the car since backing up fast is difficult.
  • If youngsters are on a bike, hold it between them and the abductors car. If they are pulled into a car, they should jump into the backseat as soon as possible and try to escape through the window.
  • Develop code words for anyone you trust to pick up your children and teach your little ones the code. Tell them not to ride or go with anyone who doesn’t know the code.
  • Know the places your children play, learn about their friends and friends’ families – especially before they go to people’s homes to play.
  • Show children safe places in your neighborhood to run to if they feel threatened – the home of a trusted friend, the local police station or firehouse.
  • Tell children to trust their instincts. “If they think something’s wrong with someone they meet, they should run away.”
  • Warn children not to fall for common lures such as: needing help finding a lost puppy. Some molesters tell youngsters they are cute and want to take their picture, or that they have a toy or candy for them. When children hear these approaches from a stranger, they should run fast to a safe place.
  • If kids get lost while shopping they should go to the nearest security guard or cashier. DO NOT ASK A SHOPPER THEY DON’T KNOW AND DO NOT GO INTO THE PARKING LOT TO SEARCH FOR YOU.
  • Children can make a potential abductor panic and flee by screaming at the top of their lungs, “He’s kidnapping me!!!!!,”  or “Fire” will quickly bring attention to the attempted abduction.
  • Tell children to walk on sidewalks, as far away from the curb as possible against the flow of traffic so they can see who’s approaching. That will make it more difficult for them to be surprised by a driver and quickly snatched.
  • Never let your little children use a public restroom by themselves.
  • Warn older children never to hitchhike.
  • Avoid putting your children’s names on their garments and possessions. When children hear their names called, they let their guard down, thinking it’s someone they know.
  • For identification purposes, take a lock of your child’s hair for DNA.

McGruff safety rules for children:

  • Say no and go tell a trusted adult if someone tries to touch you where it makes you uncomfortable.
  • Always ask for your parents’ permission before you go anywhere.
  • Always tell your parents where you will be playing.
  • Say no if a stranger asks you to go with him or take a ride.
  • Say no if a stranger asks you to help find something.
  • Say no if a stranger asks you to go into his house.
  • Always walk and play outside with a friend.
  • Never take shortcuts or play in lonely places.
  • If someone bothers you, tell a trusted adult.
  • Never hitchhike!
  • Don’t give information over the phone to anyone you don’t know.

Any parent’s worst nightmare is having their child taken away from them. The media are continually flooded with headlines of missing and exploited children. Although these crimes are real, families and children do not have to live in fear but we should be attentive and prepared. A families best weapon against such a tragedy is with communication and proper preparation to respond to dangerous conditions. By following our Five Steps to Prevent Child Abduction you can empower yourself and your child with knowledge, tools and awareness.

1. Educate Children
One of the biggest ways you can prevent your child from being abducted is by simply teaching them the basics. For younger children that includes their full name, home address, phone numbers, and basic rules (never talk to strangers, never leave the side of an adult, etc.).

You should teach your children these basic rules:

    • Always tell your parents where you will be.
    • Never get into vehicles without your parent’s permission.
    • Don’t take shortcuts or go to places where you will be alone.
    • If you get separated from your parents, find a store or police officer to help you. Don’t go looking!
    • The child should always tell you if someone makes them uncomfortable or scared.

Going over these rules and making sure your child knows their basic information can be a great deterrent from an abduction.

2. Be Involved in Activities
If you’re able, you should try to involve yourself in some of your child’s activities. Simple things like offering to coach, chaperoning a field trip or eating lunch with your child can both give you a better insight into their life and help increase your child’s trust in you. Use this list of parent/child activities for ideas to spend more time with your child. When you’re around them try to learn more about their habits, friends, and events.

3. Know and Keep Detailed Records
This is single most important step in the event that an abduction occurs. 75% of all child abductions happen by a family member or acquaintance so it is important to have accurate details about the people who your child comes in contact with. Also the first few hours are the most important in recovering you child. Use a service like InstantAmber to keep a record of your child’s details. Using a service like InstantAmber allows you to archive important information regarding your child — including their habits and relationships — so in that time of need it will be instantly available to state and federal law enforcement.

4. Prepare Child for the “What If”
In the event that something does happen to your child, he/she needs to be prepared. Teach them a few rules to maximize their chances of escape or getting help by teaching them to:

    • Scream “FIRE”. People are de-synthesized to hearing “Help”.
    • Try to escape and run if they are in danger.
    • Be persistent on looking for a way to contact someone.

Try not to instill fear into your child, just help them understand that they have a choice of action and are never helpless.

5. Listen to your Child
Finally, just listening to your child could be a wonderful deterrent to future problems. Ask them often about their fears and take them seriously. Children need to trust you and never feel embarrassed with anything they share.

By using these 5 Steps to Prevent Child Abduction you can prepare you family for the worst through education and having a plan of action.

Keep these other tips in mind, too:

  • Make sure younger kids know their names, address, phone number including area code, and who to call in case of an emergency. Review how to use 911 or a local emergency number. Discuss what to do if they get lost in a public place or store — most places have emergency procedures for handling lost kids. Remind them that they should never go to the parking lot to look for you. Instruct kids to ask a cashier for help or stand near the registers or front of the building away from the doors.
  • Point out the homes of friends around the neighborhood where your kids can go in case of trouble.
  • Be sure your kids know whose cars they may ride in and whose they may not. Teach them to move away from any car that pulls up beside them and is driven by a stranger, even if that person looks lost or confused. Develop code words for caregivers other than mom or dad, and remind your kids never to tell anyone the code word. Teach them not to ride with anyone they don’t know or with anyone who doesn’t know the code word.
  • If your kids are old enough to stay home alone, make sure they keep the door locked and never tell anyone who knocks or calls they are home alone.

Locate Predators in Your Area

  • Federal Bureau of Investigation
  • National/State sex offender registry, linking you to each state’s registry website.
  • Family Watch Dog
    Quick and easy identification of registered sex offenders in any neighborhood, including map views, offender photos and conviction information.

Amber Alerts
U.S. Office of Justice Programs
Get information about Amber Alerts and find out about current Amber Alerts nationwide.
Phone: (202) 307-0703
AmberAlert.com
A convenient portal to Amber Alert information on a state-by-state basis.

Missing Children
National Center for Missing & Exploited Children
Research missing children or report a sighting of a missing child.
Phone: (800) 843-5678

Find the Children
A registry of missing children. Also the coordinating agency for the Child Abduction Task Force.
Phone: (888) 477-6721

Get Help & Report Abuse
US Department of Health & Human Services
Report abuse or get your questions answered.
Phone: (800) 422-4453

Child Welfare Information Gateway
Search by state to find out what local agency you should call to report child abuse, including sexual abuse.
Phone: (800) 394-3366

American Academy of Child & Adolescent Psychiatry
Find out what to say or do if you discover that a child has been sexually abused.
Phone: (202) 966-7300

The CyberTipline
Report suspected child exploitation, including child pornography on the Internet.

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Sources:

Anne Arundel County, MD:  Citizen Information Center, Tips for prevent child abductions.

Keeping Children Safe:  Rhetoric and Reality. by Ernest E. Allen

Preventing Abductions, Kids Health from Neours

5 Steps to Prevent Child Abduction, Instant Amber, October 2008

McGruff Safe Kids Identification Kit.

Stranger Danger Quiz