Fetal Alcohol Syndrome~FASD
Fetal Alcohol Syndrome Disorder, (FASD) is not a mental health diagnosis or a medical diagnosis but is an umbrella term used to describe a range of syndromes and disorders that can occur in a child whose mother consumed alcohol during pregnancy. The effects and symptoms vary in severity. Many children share the common effects which include emotional, physical and learning difficulties. The common physical characteristics that can be associated with FASD are facial deformities, growth deficits, heart, liver, kidney defects, vision and hearing problems as well as permanent brain damage. FASD is the only 100% preventable cause of mental retardation and birth defects in the United States and FASD is 100% untreatable. It is estimated that FASD affects 40,000 infants each year. This is more than Spinal Bifida, Down Syndrome and Muscular Dystrophy combined.

What Does Alcohol Do?
Alcohol damages the parts of the brain that gives us memory, self control, coordinator and judgment. Children with FASD often have difficulties with learning, attention, memory, central nervous system, and problem solving skills that may have lifelong implications. FASD is a permanent condition and affects every aspect of the child's life and the life of their family.

Emotional Toll FASD Takes on A Family:
The emotional toll on families cannot be underestimated. For birth parents, acknowledging that their child's mental retardation, birth defects, and/or neurodevelopment disorders are a result of maternal prenatal alcohol consumption is very difficult to face. For adoptive or foster parents, discovering that their child suffers from FASD after years of trying to understand his cognitive and behavioral problems results in feelings of frustration and isolation.

My Then Baby is Now 14 and Everyday of His Life He challenges You Could Never Think Possible.
As an adoptive mom I can tell you raising a child with FASD is the hardest but the most rewarding thing I have ever done. Andrew is now 13 years old and is in the seventh grade. He is sweet, generous, loving and very naïve. He also has exhibited many of the symptoms associated with FASD since the day we brought him home at 1 week old. He cried all the time! Until he was 3 years old and on medication he never slept for more than 30 minutes at a time, day or night. To say life seemed impossible is actually an understatement. He required constant attention and if I let him out of my sight in another room for one minute he would destroy it. If I was not right beside him when he had a bowel movement in his diaper he would take it off and smear feces all over the walls, carpets and bed. We had to put a lock on our refrigerator because he would climb out of his crib in the middle of the night and dump everything out of the refrigerator smearing it in the carpet, walls, and beds. For years we knew that there were serious problems, but no one could help us. All of the professionals said that his behaviors were out of their expertise. We went from Doctor to Doctor, counselor to counselor and searched everywhere for answers for him and our family. By the age of three, he was thrown out of every daycare in our area, went through at least 30 babysitters, and could not stay in the nursery at Church. He was very violent toward everyone; however most of his rages were taken out on me. He would bite me, hit me and throw things at me. He would put holes in the wall, windows, threw rocks at us, as well as the cars and was basically never happy. When he started school a whole new nightmare started. The fourth day of school he had thrown toys, supplies and destroyed the classroom than ran out of the room causing the teacher to have to leave other students to chase my 4 year old. He was moved to an emotionally disabled class where they had experience with other children like him.

So Many Words With So Many Diagnosis:
By the time he was 5 he had so many diagnoses I lost count, but none of them actually explained the severity of his behaviors. We had tried 21 different medications and tried at least 4 different kinds of therapy. We started researching the internet and found a few sites about FASD and found that there were several places in the USA that specialized in FASD. Andrew and I packed up, leaving my husband and other two children at home and went in search of a diagnosis. We went to Baltimore, MD and saw a FASD specialist that finally gave him an accurate diagnosis of Fetal Alcohol Syndrome. While we finally had a diagnosis nobody seemed able to help us get his behavior under control and his behavior was getting worse. At that time, he was on 7 medications however none were effective. We went back on the internet searching and learning about FASD and found a "severe" behavior clinic, The Marcus Institute, in Atlanta GA. They observed his behaviors and they immediately asked if we would be open to coming to Atlanta to live for a couple of months so he could attend the clinic. It was their observation that his behaviors were something that would not ever get better without extreme intervention. At this point we had no choice; he was getting bigger, stronger and more destructive everyday. After fighting insurance complications, Andrew and I went to Atlanta where he underwent treatment, testing and training for eight weeks.

Severe Behavior Clinic:
After two months of hard work the severe behavior clinic was able to decrease his problem behaviors by 96.6% from when we first started the program. The skills we learned are skills we are still using to keep his behavior under control. While we still have bad days, we also now have good days. He is able to stay at school all day now, with the help of a shadow and he is able to play baseball and football with other kids his age and he is happy.

What is Being Done to Communicate With Andrew?
Andrew, as well as most FASD children will never be what others feel is "normal" and that is okay with us because he is now a happy little boy. He is learning to read, and is slowly learning social skills. We had to adjust our expectations as well as learn to think "outside of the box" when we are dealing with him and his problems. We are living a fairly normal life, whatever that is. We are not healed in the traditional sense but we are functioning and making progress. He is now off of 5 of the 7 medications and has really grown physically and emotionally.

FASD Is The Only 100% Birth Defect That You Can Avoid:
Most children with FASD have many issues to face their entire lives. FASD behaviors are treatable but not a curable condition that can be fixed with therapy or medication. There are some children who benefit from certain types of medication, but the medications only address some of the symptoms. Permanent brain damage cannot be fixed or medicated. Creative behavior management works well most of the time. Children with FASD have processing problems and cannot understand cause, effect, or consequences. One of the most important things I have learned from my son is to keep an open mind, a sense of humor, and my faith in God.
Contact me at: mrsrevjohnson@charter.net
Fetal Alcohol Syndrome

Frustrated Parents:

I get so many calls asking what they need to do with their special needs child, at school.  They are constantly telling me that the schools won’t do what they need to and their child’s not getting any appropriate services.  Here is what I have found when working with my special needs son.

 

Educating Staff:

Be well informed of your child’s condition, learn the special education laws and note taking.  Be sure to document everything that is said.  You never know what you’re going to have to recall later on and it’s better to have it written then your memory. Here are some tips on becoming an effective advocate for your child.

1. The first and most important thing you need to do is keep open communication with teachers and other school staff.

2. I can’t stress to you how important it is to learn special education laws.  In almost every state there is a parent’s advocacy program.  Many times they do free workshops as well as offer other local resources.  Go the workshops!  You won’t believe what you will learn.  I have been going to the same workshops for 14 years now and each time I learn something new.  There are a few websites that can help with teaching you to advocate for your child.  The one that sticks out as the most helpful is www.wrightslaw.com as well as PACER’s website. The Wrights have several books out and they are each great to help you along the way.

3. TAKE NOTES, I know I mentioned it earlier but that’s your best defense in getting what your child needs.  When someone who works with your child calls or makes home visits be sure to first document that was said and done.  If you talked to the teacher for any reason document it.  I like e-mail because you actually have proof of your child’s progress.

4. Don’t be afraid to take the meetings.  Be sure to let the school know before so if they want to tape it they will have adequate notice.  Most of the time they are very cooperative and accommodating. 

I can’t stress enough that if you keep up with who said what you will remain focused.  Document all e-mails, phone calls, personal visits to the school and notes sent home from teacher.

Have you found anything better? Please share:

Hope you have found something in this article useful.  You will have to do the ground work because most of the time even teachers who are certified in Special Education.  They have to give the experts, “parents” all information they are using to make recommendations for the child.

Dealing with your special needs child's in the public school system.

Remain calm and positive.  Nothing ever come from losing your temper.  Most of the time the school is trying to help not hinder but I have found they many times have no idea what the laws are.  Even though they aren’t allowed to say they can’t provide the services because of the low funding but money does many times.  They are prohibited to use money as a reason a child isn’t getting the services the child needs.  Let’s be realistic money drives our education system and it’s not fair for the ones who have special needs.

Dealing with Your Teens Crazy Behaviors

Parents tend to change the way they parent as the teen gets older. They want to be their child's best friend and that just doesn't work. Just because they are young adults should not stop you from parenting, in fact it should go into overdrive.

Teens seem to expect to have everything their friends have and they have no true sense of what things cost.

So many parents find themselves in this situation. They are well meaning and loving parents. It seems that if the parents had a hard time growing up that the parents would want what was best and being their friend isn't what is best. So much of the time teens are overindulge, therefore the monster have learned what works. 

You can change some of these behaviors.

1. Stop the power struggle.
2. Stop rewarding them for inappropriate behaviors.
3. When you say no you mean no. You can't change your mind.
4. Stay calm and refuse to argue with them.
5. Your child has some great qualities. Praise them and reward them for appropriate behaviors.
6. Don't try to buy their love, it doesn't work.
Your job has changed from when they were little. Now your job is to raise loving, responsible adults. Don't bail them out of everything they get themselves into. Your not helping them. Let them try to figure out their own problems, then if they need help guide them to the right answer don't do it for them.

Just remember this to will pass. You thought the terrible two's were hard. You haven't seen anything yet. Get control now.

How Do Pre-school Teachers Manage Aggressive Behaviors

Before talking about how to manage aggressive behaviors let's talk about what behaviors are.

Behavior is one way a child can communicate with others.  All behavior, good and bad is how preschoolers communicate and let others know what they need.  When the child begins to demonstrate problem behaviors you need to be very proactive and address the problems before the behaviors get out of control.

One of the hardest things to do is figure out why your child is having problem behaviors.  The behaviors are a symptom not the answer.  Caregivers have to play detective in order to find out what is causing the aggression but most of the time they don't even know what the problems are, all they know is something is wrong in their world. 

 

So what do preschool teachers do to manage these behaviors?

1.        The first thing you can do is be sure the child is on a schedule.  Not only to make things easier for you but also to manage anxiety he is feeling.  Schedules provides the child the security of knowing what is going to happen each day at the same time.  He is not going to like it because he is used to being the boss in the house.

2.       When you start trying to get him under control his behaviors are going to drastically increase.  He is going to pitch fits, refuse to stay in his bed, throw things, scream and cry.   If he gets out of his bed silently put him back in his bed.  You don't need to explain it to him.  He knows he isn't to sleep in the parent's bed anymore.

3.       While you're working on the bedtime routine his behaviors are going to sky rocket.  He is going to hit, bite, kick and scream.  By the behavior getting worse proves that you are taking control back.  He isn't going to like it but if you don't get him under control before he gets bigger things aren't going to go well for him.

4.       As was mentioned earlier there is a reason for his aggressive behaviors.  You are going to need to be one step ahead of him at all times.  Have a plan ready so when you are in the middle of a battle you already know what steps you're going to take because you're going to want to throw your hands up and let him just do what he wants.  It becomes very overwhelming when you are in the middle of battle.

5.       Use time-out.  I know that it doesn't look like it's going to work but if you will follow the steps you will see a difference.  Here is an example: Your child hits someone on the playground.  Teacher goes over to him where he had just thrown sand into one of the little girl's eyes.  Hopefully as part of your plan you have scouted out a place for time-out.  When you get to him you simply tell him "there is no hitting" take him to the time-out chair and sit him down.  You say nothing else.  When he trips to get up and run you catch him and tell him, "There is no running from me." Take him back to the chair.  This may take a hundred times but be consistent and don't give into him.  When his time out is over give him a hug and make him tell the other child he is sorry.

So what do you think his motivation is?  He wanted it his way and you started making rules. The normal tactics you have used in the past aren't working so it makes him feel insecure.  What he doesn't know is you're going to keep this up.  This will work for home and school; you just have to train the staff.

Keep in mind that this is going to be an ongoing way of disciplining him.  Most likely he is going to start off with problem behaviors and when you do time out again he is going to increase the problem behavior.  Teachers and parents need to be prepared that he is going to pitch one giant fit when he realizes everyone is working together and he has to follow the rules.  Behaviors aren't going to change overnight but if you will keep doing as I am teaching you it will work.  It may take a month or two to see the full impact of changing those problem behaviors. Not to mention as he grows things are going to change and you are going to have to figure out once again what the problems are.

Could this be your child? Leave comments and questions.  I will be updating pretty often so keep checking back!  

Getting Support For Your Child and You

 Getting support for your child and yourself

As I promised yesterday, this article is a follow-up from to give you hope and ideas dealing with children who have behavior problems.  Behavior modification strategies you can do.

As I said yesterday there are ways to deal with these behaviors ways to deal with these behaviors but you have to address the aggressive behaviors the same way every time.  No threats or promises just say what you mean and mean what you say.

First and foremost, you need to understand your child's aggression and problem behaviors.  There is always a way to deal with inappropriate behaviors.  Communication is probably the most important and most difficult task you will face.  Many times the aggression and poor behavior comes from frustration. It would be so much easier if they could just tell us what is wrong.  Most of the time they just can’t tell us what is going on.

Keep a log that you can refer back to when his aggressive behaviors begin.  In this log you need to document several things.

1.      Time of day when these behaviors will appear.

2.     What was going on just before the problems started?

3.     Did you do time-out and if so what had to be done and what was the outcome?

4.     How was the problem behavior addressed?

Just remember there is always a reason for these behaviors.  It will help you stay calm during the meltdowns and you can look back and see if there is any sort of pattern in regards to behavior. 

I have a huge list of strategies that work, not just for a little while these can be used at every stage of his life.

Most special needs children need the support of an adult to help them get through the different stages.

The most important step is to be consistent.  There is no better way to change the targeted behavior except to address each problem as it comes.  You treat all inappropriate behaviors the same.  They can’t determine when one thing is worse than another.  The bottom line is regardless of what the child does its still inappropriate.  They get frustrated when they can’t get their point across.

Now the good news, you can change the behaviors. You just need to stop what you’re doing because my guess is that you have been trying to deal with this on your own.  At this point it’s going to be very important that your child gets the services they are entitled such as counseling, support group and anything else to help the child be successful.

1.      Encourage them to use his words rather than pitch a fit. Teach appropriate behaviors.  You need to replace the problem behaviors with a behavior that is appropriate.
 

3.     Your response is very important when you are dealing with the problem. You need to do it without any emotion.  If he bites or any type of physical aggression you would say something like “There is no biting mommy.” And take him to timeout.  I know you’re thinking “There is no way he can bite me and I not say anything.”  Yes you can do the same.  It takes practice but you can do it.” Emotional responses are 1-not helpful and 2 he isn’t getting attention from you.
 

4.     The whole time a meltdown is going on your need to limit conversation.  There is no talking to him while he is in time-out no matter what he says.  Mine would always say he had to go to the bathroom.  I still wouldn’t answer or acknowledge what he says because it’s a tactic to get out of timeout.

5.     All behaviors have consequences.  Good and bad.  Some are natural and some are to change the behavior problems.
 

6.     If there any pattern to the behaviors? 

7.     You know your child.  If you notice he is struggling with something and getting frustrated you can hopefully stop the situation and redirect him.

8.     Model appropriate behaviors.  They need you to provide the support and to take over because as much as he wants to calm down he needs that authority figure to take the control and help him calm down.

Providing Immediate Consequences

1.      The “punishment meets the crime” isn’t how you deal with the problems of special needs kids.  The consequence care always the same regardless of what he did wrong.

2.     You need to have a plan.  Don’t make decisions during the meltdowns.

3.     Time out seems like a joke but it does work if you are always consistent.

4.     Time-out is a time that he needs in order to calm down.  Be consistent.  They get very confused when things change.  If throwing a toy got him time-out yesterday but when he did the same thing today nothing happened to him.  That can be very confusing.

5.     Children want to please their parents as well as anyone in an authority position.

6.     Because of his special needs he struggles to self-regulate.  He lacks the skills to control the behavior. 

7.     There are times that he keeps moving forward.  But there are times no matter what you do that its not working.  The reason for this is because it’s always worked for him in the past so he just keeps raising the bar in hopes that you will give in.

What you can do to head off a meltdown

1.      Catch him being good.  He needs all the positive reinforcement he can get.

2.     Use social stories to reinforce good choices and good behavior.

3.     Give lots of verbal praise when he complies with a task without fighting about doing it.

4.     Again, model behavior.  They are watching every move you make.

5.     Focus on the behaviors you want from him by praising him when he does something right or makes a good choice.

6.     Set up a reward system that focuses on rewards for appropriate behaviors.

7.     Immediate stop all positive reinforcement when he makes a bad decision.

8.     When all has settled down that is when you will teach appropriate behaviors.

a.     Speak with him about what happened.

b.    Reward him for his participation and appropriate behavior.

c.     Talk to him about other options he may have had. Acknowledge his frustration.  “I know you’re angry but I like how you handled that.”

If you start using positive reinforcement the use of punishment will drastically decrease.

Please share your stories in the comment section.  Are you dealing with the same types of problem behavior?   Give other parents some hope and ideas.  Each child is different so different things work for different children.