This was my son.

Dr. Bruce Perry, a Child psychiatrist featured on the Oprah show states that neglect is the absence of necessary stimulation in order to build a certain part of the brain. In order for children to learn, to stimulate areas of their brain they NEED stimulation. Without stimulation they will learn to stimulate them themselves or retract into themselves. Your brain will form differently.

Dr. Federici calls this Institutional Autism in Institutionalized children. But, what about biological children?

Dr. Perry calls this total global neglect.

But, can you make a child autistic by neglecting them so thoroughly because they never, ever come into contact with humans? That they are so globally neglected that they retreat so thoroughly into themselves that they can’t get out.

Can neglect cause mental retardation?

Absolutely.

Danielle, one of Florida’s most shocking cases of neglect was not only malnourished but also so severely neglected that when she was admitted to the hospital for a physical her appearance wasn’t what shocked Dr. Rodriguez most. The most profound effect of her neglect was how she reacted to human beings. “She wouldn’t make eye contact. She frequently pushed us away, kicked us away,” Dr. Rodriguez says. “[She] would snarl at us, frankly. She behaved like an injured animal. We realized the safest place would be one of the caged cribs.”

If there is little or no stimulation, if there is no human contact, if there is nothing there what else is there? Little development. Danielle, at the age of 9 years old, was determined to be 2 months old developmentally. AJ, at his adoption (26 months), was determined to be between 12 and 18 months, depending upon the skill.

Parents are powerful. If you look at this picture (and I am linking to this picture because it is SO extremely important to see) you will see the difference between a normal three year old child and an institutionalized/neglected three year old child. Perry indicates in his interview that the neglect specifically affects sleep, anxiety, and mood regulation, all of which AJ has problems.

So, in our case, is it an issue more with neglect and institutionalism than with medical issues? I am hoping so because I know that children have an opportunity to rebuild some of those synopsis (some) with care.

Yes, back to that nature vs. nurture. Which one wins?

Post from: Blisstree

Oprah, on Neglect

The problem with the study is that the children examined were only from a high socioeconomic group and these children (as reported) tend to do better developmentally than children from a lower economic group.

Additionally, the adverse effects of light drinking is subtle, unlike the effects of heavy drinking.

Post from: Blisstree

Alcohol Study has Wrong Message

• Sensory and social deprivation can result in the autistic-like behaviors.
• These behaviors may diminish after the child is removed from the initial deprived environment.
• A substantial minority of children will continue to exhibit these difficult behavior patterns for many years.

Risk Factors:
• Heredity and neurological make-up of the adopted child.
• Lack of postnatal care and negative conditions of development before institutionalization.
• Age when placed in an institution and the length of institutionalization.
• Conditions in institution/country of adoption.

Basically, children learn to be autistic because of their experience in the orphanage…stimulating themselves to pass the time or to entertain themselves. In our case, we believe AJ was swaddled for a decent amount of the two years he was there. He was chronically ill will bronchial infections due to an undiagnosed milk intolerance and an oat and banana allergy (the two main foods in his diet there ). Thus, if he was ill he would have either been swaddled and placed on his back in his crib or left to sleep in the playpen off to the side.

Now, if you were 1-2 years old with nothing to do, no toys to play with…what would you do????

AJ learned to play with toys inappropriately (line up and spin all toys because what else can toys do?), poke his eyes, spin in circles, stare out windows, throw monster tantrums at ANY change in movement (if you were in the same place ALL day, would you like to be moved?), stare at lights to keep from sleeping, attentive to every sound (in his crib he could not make eye contact but could hear everything)…I could go on but those are the MAJOR items.

Now, those things have diminished, as have most of his sensory issues. As Federici and Rutter state, most children will recover from Institutional Autism given the right home life. Thank goodness he has been given that.

One thing that we are specifically working on is making sure that AJ has the right resources to improve, not just the “positive dynamic in the child’s development of appropriate behaviors in the family.” If he truly does have organic autism we need to make sure to have him tested on a regular basis. Now that AJ has been home two years and has made some language improvements we need to start chronically his improvements. If he does not make any improvements (or falls behind) we should be looking at organic autism, not just institutional autism.

Post from: Blisstree

Institutional Autism

But, we can work to avoid the holiday meltdowns as much as we can. Ultimately, the meltdowns will come…we all know that but we can certainly try to avoid them.

Meltdowns happen for our children when they cannot communicate to us, their routines are disrupted, their sensory functions are out of whack (think twinkling Christmas lights), and there is all together too much. We, as parents, are the ones in charge of keeping them safe and we are the ones in charge of keeping them in control of their own emotions and functions. Just how do we do that?

1. Keep a scheduled routine.
When we lived in Michigan and traveled home for these holidays we still put him to bed at 7 despite the holiday festivities. If we didn’t we knew the consequences would be disastrous for the next day. We had meals at the same time (we requested this of our parents) One set of parents was very accommodating to this request and the other was not. So, we fed AJ early and allowed him to play during dinner. This upset the parent but because we knew what was best for him (and we knew he physically had to eat at a certain time) we followed our own rules.

If you are not traveling sticking to a routine is still just as important, especially if a newly adopted child is used to having structure like school. Even though AJ has been home 2.5 years we still stick to routine and structure because he needs it. We enroll him in a special needs camp to keep him active or we structure his day with low-grade activity to keep him busy. An unstructured day leads to chaos.

Using a visual schedule like PECS is great. If traveling take along a travel PECS system. Social Stories also work great. Stores like the Therapy Shoppe have pre-made Social Stories for you.

2. Keep stimulation to a minimum.
To a newly adopted (or autistic) child stimulation is the root of all evil. Our first Christmas with AJ was spent at my parents house in Illinois because Grandpa Pickel was ill and we did not want to expose him to anything but we still wanted to travel to see him. My father was constantly turning on all the Christmas lights in the house and my mother got out every single Christmas decoration she could find (after we specifically told them not to). We had learned just after we put our Christmas tree up that AJ could not handle the lights because he would self stimulate by putting his face into the tree and staring at the lights for hours. We did not put any other Christmas decorations out either because we knew he would have trouble with them.

Lights, sounds, people all contribute to stimulation. Limit all of these things as much as possible and insist that others help you with this. If they can’t, then you must take it upon yourself to do it. We ended up clearing my parent’s living room, our bedroom there, and the kitchen of much of the decorations so AJ could not stim or get into things. It helped but we had to constantly explain to my parents about who he was. They are now getting used to it.

3. Teach calming techniques.
Try using relaxation techniques such as counting to 10, reciting the ABC’s or colors, massage, yoga, deep pressure, deep breathes.

4. Manage Transitions. The Oregon State Department of Education has an excellent transition plan; Notify, invite, engage, plan, and implement. For children this can be done in any situation. If leaving an event: notify your child that you will be leaving, invite them to leave with you, engage them in the join in the plan by implementing it…

5. Stay calm yourselves and get enough sleep. Lack of sleep can agitate everyone, including children. Make sure to keep nap schedules (if they still nap) and try to work some in yourselves.

Post from: Blisstree

Avoiding Holiday Meltdowns

or

What do you think the food will be like in the country you are going to travel to?

Do you think that your child will like the food you have in your refrigerator? I know that we tried to keep AJ’s food the same but he took delight in some of the new foods. We fed him yogurt and bananas, baby rice cereal (he did not like our oatmeal), animal crackers, and graham crackers, etc. We tried to get him to eat meat and some cheeses but we found out that he was very lactose intolerant. He loved the Gerber crackers and fruit puffs because they had just enough sweetness in them that they were like candy for him.

Post from: Blisstree

Question: Food

However, where does ARND fit in? What happens to kids who are throroughly affected but their birth mother only drank 1-2 drinks a day?

• Science is not always right.
• Alcohol is always capable of causing fetal effects.
• FAS always involves brain damage, impaired growth, and head and face abnomalities.
• NO amount of alcohol has been proven safe.

So, in my opinion and because FAS is 100% preventable, take the better safe than sorry approach. Don’t drink.

Post from: Blisstree

How Much Can A Pregnant Woman Drink?

Alcohol damages parts of the brain that give us memory, self-control, coordination, and judgment (thus, cause/effect and consequences). Most children with FAS have problems with learning, attention spans, behavior, and fine motor skills because of this.

Post from: Blisstree

How Does Alcohol Affect the Brain?

 National Organization on Fetal Alcohol Syndrome:

“No safe time. No safe amount. No safe alcohol. Period.”

Centers for Disease Control and Prevention:

“Public health concern over the use of alcohol during pregnancy was first signaled in 1981 by the release of a public health advisory from the Office of the Surgeon General warning women who were pregnant or planning to become pregnant to abstain from alcohol use because of the potential risks to the fetus. Since that time the U.S. Department of Health and Human Services issued additional advisories in 1990 and 1995 reiterating that women who are pregnant or planning to become pregnant should not drink alcohol.”

“In fact, it’s best to stop drinking before you try to become pregnant.

More from the March of Dimes: “No level of alcohol use during pregnancy has been proven safe. The March of Dimes recommends that a pregnant woman does not drink any alcohol – including beer, wine, wine coolers and hard liquor – throughout her pregnancy and while nursing.

“Drinking while pregnant can cause fetal alcohol syndrome,

United States Institute of Medicine (1996):

“Universal prevention intervention strives to ensure that all members of society understand that drinking alcohol can have hazardous consequences, particularly during pregnancy. The universal prevention message for FAS is a conservative one that encourages abstinence prior to conception and throughout pregnancy as the safest alternative.”

Vanderbilt University School of Medicine: “Laboratory studies suggest that a single drinking binge by a pregnant woman can damage for life the brain of her unborn child.”

“Drinking in late pregnancy is really unsafe for the brain… One glass of wine at dinner is unlikely to cause the damage, but we cannot say that any added intake would be safe… The most prudent policy would be to have no alcohol during pregnancy.”

American Academy of Pediatrics (1993): “Fetal alcohol syndrome is one of the most common identifiable causes of mental retardation, with a worldwide incidence estimated to be 1.9 per 1000 livebirths. However, when children with less severe manifestations of the syndrome (FAE) are included, the estimated incidence may be as great as 1 in 300 livebirths. Evidence indicates, however, that physicians may not consistently inquire about alcohol use during pregnancy or recognize the full spectrum of the effects of prenatal exposure.”

“There is no established ’safe dose’ of alcohol for pregnant women.”

American Academy of Pediatrics (1998):

“FAS is the leading cause of mental retardation in newborns.”

“There is no safe level of alcohol consumption during pregnancy.”

“Even one drink risks the health of an unborn baby.”

“Pregnant? Don’t Drink. Period.”

Post from: Blisstree

How Much Can I Drink if I am Pregnant?

The day was chosen on the 9th  so that women would remember that nine months of pregnancy is the most important nine months of their lives to abstain from alcohol.

In honor of this day please look back over this year at all the posts on FAS. Please take your time reading and learn!

•  Classroom Strategies on FAS
• Mom Fills Bottle with Wine 
• How to Get Your Child an Aide 
• Child With Fetal Alcohol Syndrome Dies 
• Is There a Cure for Fetal Alcohol Syndrome?
• Misinterpretations of Fetal Alcohol Children
• Summer Struggles III: Living with a Child With Fetal Alcohol Syndrome
• I Broke Down and Cried: A Series on FASD
• Doctor Says Pregnant Women Can Drink?
• Fetal Alcohol Syndrome DSM Survey
• FAS, Acting Before Thinking
• Pregnant, Drunk but not arrested?
• Pregnant Mama in Bar Scuffle
• Jailed for Pregnant Drug and Alcohol Use: Is it Right?
• The Best Fetal Alcohol Spectrum Disorder Resources
• Fetal Alcohol and Autism, is there a Link?
• Is There a Cure for Fetal Alcohol Syndrome?
• What is Fetal Alcohol Syndrome?
• What are the Symptoms of Fetal Alcohol Syndrome?

Post from: Blisstree

Fetal Alcohol Spectrum Awareness Day!

I also thought that some of you would love some information for your children’s teachers…I know that finding information on FAS is difficult. Please print out some of these great resources to help your kids.

Classroom Strategies

• Meet with parents, the student and professionals in the community to determine individual needs of the student.
• Develop an Individual Education Plan (IEP) specific to the student’s needs.
• Prepare the student for all changes in routine and/or environment.
• Carefully organize daily situations.
• Teach the student the habit of moving from one step to the next.
• The student will have a lot of trouble with organizational skills, regardless of their apparent intelligence and/or age.
• Use verbal cues, clear visual demonstrations and physical cues.
• The student will have problems with abstract thinking and concepts. Avoid abstract ideas where possible. When abstract ideas are necessary, use visual cues as an aid.
• An increase in unusual or difficult behaviors probably indicates an increase in stress, sometimes a feeling of loss of control in a specific situation. Try saying, “Do you have something to tell me?” The individual may need to go to a “safe place” and/or “safe person.”
• Don’t take misbehavior personally.
• Most children with Asperger’s Disorder use and interpret speech quite literally. Until you know the word processing capabilities of the student from personal experience, avoid: “cute” names such as Pal, Buddy, Wise Guy, etc.; idioms (”save your breath,” “jump the gun,” “second thoughts,” etc.); double meanings; sarcasm; and teasing.
• Be as concrete as possible. Avoid using vague questions like, “Why did you do that?”
• Avoid essay-type questions. They rarely know when they have said enough or if they are properly addressing the core of the question.
• If the student doesn’t seem to be learning the task or concept, break it down into smaller steps or present it in more than one way – visually, verbally and physically.
• Avoid verbal overload. Be clear. Remember that although they don’t have a hearing problem, and they may be paying total attention to what you are saying, they may have difficulty understanding what you feel is important in what you are telling them.
• Behavior management works, but if incorrectly used, or used without keeping the student’s level of ability in mind, it can feed robot-like behavior or be ineffective. Use with creativity.
• Consistent treatment and expectations from everyone is vital.
• Be aware that auditory and visual input can be extremes of too much or too little, depending on the individual.
• Do not rely on the student to relay messages to home about school events, assignments, school rules, etc., unless you are certain that the student is capable of relaying the message. A phone call home works best until this skill can be developed.
• Involve the parents in the work and techniques used at school. The child will function better in a structure common to home and school.
• If the student uses repetitive verbal arguments, and /or repetitive verbal questions, try requesting that s/he write down the question or argumentative statement. Then write down your reply. Or try writing their repetitive argument and/or statement yourself, and then ask the student to write down a logical reply. If your student does not read or write, try role playing the question and/or argument with you taking the child’s part and the student answering you in a way they think would be logical.

Post from: Blisstree

Classroom strategies for FAS