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
Monday, December 23, 2013
Labels: Aggression , discipline , FASD , positive behavior management , problem behaviors , Special Education , special needs child 0 commentsFrustrated 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.
Thursday, December 12, 2013
Labels: Aggression , discipline , FASD , friends , positive behavior management , problem behaviors , Special Education , special needs child , teens 0 commentsParents 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.
Friday, November 22, 2013
Labels: Aggression , incentives , positive behavior management , problem behaviors , Special Education , special needs child 0 commentsRaising Ungrateful Teens
Teens are such a joy some days and others they are monsters.
Raising ungrateful teens isn't always what it looks like. Teens are wired different from anyone else. Sometimes they act like they are two years old, stomping their feet, slamming doors and just plain temper tantrum, then the next day they come in being sweet and helpful. It's such a confusing time for them as well as us parents. You never know who your dealing with. You almost want to ask them if you're dealing with the two year old or the teen. If your confused imagine how they are feeling, they are on hormone overload.
With that said, some teens are just plain ungrateful. How did that happen? They have a mentality entitlement attitude, it's just how they are wired. The hard part about all of this is while you are trying to raise well rounded children who can one day take responsibility you're fighting against society. They are never told something they have done is wrong. All they hear on TV, friends and media is how wrong parents are and how to escape responsibility. They are taught they everything should be fair and they should never be told no.
Parents are their child's first teachers so basically you participate in creating these monsters. Don't feel bad, you're just loving them and want them to have what you didn't. So why do you seem shocked when they act ungrateful? It's not just parents that indulge these kids, this Country is so focused on "being friends" and not parents they learn at an early age that they are not going to be told no, lose a sports game or failing a test.
Teens scream and yell and slam things just to get what they want and they want it now! So much of the time they know if they keep arguing with you they will wear you down and they know eventually they will get what they want. They use what works and it usually does. They know that. It takes two to fight if you take yourself out of the equation they have no one to fight with. Say what you mean and mean what you say.
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.
Wednesday, November 20, 2013
Labels: discipline , friends , hormones , tantrums , teens 0 commentsThursday, November 7, 2013
Labels: Aggression , discipline , incentives , positive behavior management , power struggles , problem behaviors , Special Education , special needs child , support , teens 0 commentsThe title of this law is a joke. It should say No Child Left Behind except for special education students.
The public law, 107-110 states that the purpose of NCLB is to ensure that all children have a fair, equal and significant opportunity to obtain a high quality education. In theory children should reach, at a minimum proficiency and challenging state academy.
Nationally there is a significant gap between the achievement test scores of children from low income families, racial differences, children with disabilities and the "normal" children.
The NCLB requires annual proficiency testing, research based reading program, highly qualified teachers, supplemental education services and public choice as well as parent involvement.
The theory is that by the time a child is in the 3rd grade they will all be able to read on grade level. All children are tested on grade level regardless of their capability. So basically if you have a child who is in the 6th grade but is reading on a second grade reading level there is no way the child is going to be able to pass a test that is on a sixth grade level. Not only are they getting state tested on their grade level but their classwork has to be given in the grade level the child is attending. This is where this law makes no sense. If a chid with a disability can only read on a 2nd grade level but tested on 6th grade level they are being set up to fail. To top it off the overall scores dictates how much Title one money they will receive.
The other part of the law states that if a Title one school fails to meet adequate yearly progress (AYP) two years in a row you can move your child to another school in the district that does meet AYP. If the school fails to meet AYP for three years the school must provide supplemental education services, provided supplemental education services including tutoring, after school programs and summer programs. These services are free to parents however the problem is when dealing with special needs children that are years behind their grade level no amount of supplemental services are going to catch them up to grade level. Not to mention special needs children are tired, overwhelmed and overstimulated by the end of the day.