FASD FACTS

What is Fetal Alcohol Spectrum Disorder?

It's pretty simple really. According to Birth Defects.org

"Fetal Alcohol Syndrome is a group of physical, mental, and neurobehavioral birth defects that result from the mother drinking alcohol during her pregnancy.

Children with FAS may have many but not all of the following characteristics:

Growth deficiencies: low birth weight and length with ongoing growth deficiency and/or failure to thrive
Facial abnormalities: small eye openings, eye problems, ear deformities, flat mid-face, short upturned nose, low nasal bridge, and smooth, thin upper lip
Organ abnormalities: heart and liver defects
Skeletal deformities: small head, deformed ribs, curved spine, and joint problems
Central nervous system damage: mental retardation, tremors, seizures, coordination problems, learning disabilities, and abnormal behavior such as extreme nervousness, poor socialization skills, attention deficit, and hyperactivity

The facial characteristics of FAS may be most apparent in a child who is between the ages of two and ten. Prenatal alcohol exposure does not always result in FAS. Some babies are born with Fetal Alcohol Effects (FAE) that may include some but not all of the symptoms of FAS. These babies may be normal physically and mentally but have other symptoms such as hyperactivity and behavior problems."

How do you know if your child has Fetal Alcohol Syndrome?

While some deformities of FAS may be evident through prenatal ultrasound, it is difficult to diagnose FAS during pregnancy. Severe cases of FAS can be diagnosed at birth. The diagnosis is not based on a single symptom, and mild cases may be difficult to diagnose.
Some FAS cases may be similar to other conditions that have some of the same characteristics, which can make diagnosis very difficult.

Infants with FAS often are irritable, overly sensitive to noise, behind in their development, have trouble eating and sleeping, have too little or too much muscle tone, and don’t like to be held. If a child exhibits these symptoms or the other problems mentioned above and the mother drank alcohol during her pregnancy, a trained medical professional can evaluate the child for FAS.

Doctors typically rely on these symptoms and evaluations of intelligence and language development to help make a diagnosis. When a child is diagnosed, other children of the mother should be evaluated to determine whether they also have FAS.

What causes Fetal Alcohol Syndrome?

FAS is caused by the mother drinking alcohol during her pregnancy. The alcohol passes from the mother’s bloodstream through the placenta into the blood supply of the developing baby. Alcohol in the baby’s system can kill developing brain cells, slow growth of the brain, interfere with the neural connections in the brain, and affect other organs. Often mothers who drink have poor eating habits that also affect the baby. The range and severity of damage from alcohol varies from case to case and may be the result of various factors such as the quantity of alcohol consumed, the timing during pregnancy, the pattern of alcohol use, genetics, and environmental factors. There is no known safe level of alcohol consumption during pregnancy. FAS is 100% preventable when a woman abstains completely from alcohol consumption during her pregnancy.

How can you help a child with Fetal Alcohol Syndrome? 

There is no cure for FAS. Major physical defects of FAS may be corrected by surgery. Early diagnosis is important so intervention programs can be started such as speech therapy, physical therapy, and special assistance in school.

Counseling and treatment programs can also help women struggling with alcohol abuse. Understanding FAS and having the support of professionals and other parents of children with FAS can help families cope with and manage the symptoms of FAS. Some steps parents can take to help manage behavior problems of FAS include implementing daily routines, creating and enforcing simple rules, using rewards for proper behavior, and encouraging decision-making in safe environments.

What’s in the future for a child with Fetal Alcohol Syndrome?

Many of the physical characteristics of FAS become less noticeable as the child ages. The emotional and behavioral problems, however, may increase. The symptoms of the neurological damage are usually the most serious.
Most children will have normal intelligence while others will have mental retardation. Many children have serious problems with attention, impulse control, behavior, judgment, problem-solving, abstract concepts, and memory. Some children have vision and hearing difficulties.
As children with FAS mature, they may have difficulty performing in school, keeping jobs, and maintaining healthy relationships. Therefore, early diagnosis and treatment are important to help maximize a child’s potential.

Birth Defects.Org has a good fact sheet describing fasd. They also have a downloadable pdf that you can refer to for more detailed information. That is where I got a lot of my information.

The number of children born in the US with fasd is proven to be increasing.

I feel that this is the place to once again point out that FASD is completely preventable.

The next 5 links have a wide range of depth of information on prevention of FASD:

1. SAMHSA
2. NOFAS
3. Mayo Clinic
4. National Center for Biotechnology Information
5. Wiki

I did not put together this page to discourage anyone. I am the type of person that likes to have facts as a foundation for decisions made towards a better end so just in case you are that way too here are facts for you to use as a base to help you make your decisions upon. I also wanted this in black & white for all of the "He looks normal & healthy." people who have a hard time seeing the severity of my son's disability. For all of the people who do not realize the work and intensity of the training that has gone into this child to help him fit into your world as much as he is able to fit into it. The next step is hope & hard work. I will tell you more about that in the next post.

Peace,
Fred's Mom

It's not a Meltdown, it's a Tantrum

Yesterday was not a good day. I ended up in the ER after a major hive reaction to antibiotics and Fred had to stay with Grandma. 


Now, my mother is a tiny lady who isn't much bigger than Fred and Fred treats her like she is not an adult and bullies her. 

It was major chaos here when I got home with Grandma locked in her room and Fred having a major tantrum in his room. The cats were all hiding and my little dog was cowering under the covers in my bed.

Fred had broken his bed jumping on it and thrown all of his stuff everywhere. Just imagine all the legos on this table along the cars and superhero action figures. All the books from his shelf were everywhere, it was a large mess. Fred was yelling at the top of his lungs that life isn't fair and everyone hates him that he hates his life. He was "jump-stomping" (that's jumping with both feet in one spot) and he had the whole house shaking. 

Fred's "thing" with Grandma is making her feed him non-stop and yesterday, when she gave him his snack and told him no more he got angry. One of the things we have been working on is Fred's treatment of Grandma when I am gone and how she needs to respond to it. Because first and foremost it is very rude and inappropriate for Fred to bully Grandma. He will physically push her and scream at her to do what he wants her to do. This is a behavior that has just began since April and has gotten out of hand. Secondly, bullying someone smaller than yourself is just plain wrong. I want my son to grow up respectful of women and his elders and to be nice to others weaker than himself. Grandma has been coached to give Fred snacks by the clock. (wake-9am is breakfast, 10am is snack, 12pm is lunch, 3pm is snack, 5-6pm is dinner) and when it isn't time tell him so and go on. Fred isn't used to that yet and thus began the tantrum.

 
We have been using the card that he has written the 4 important skills he needs to learn on. We keep it handy on the table where we can refer to them as needed. Here they are, in this picture, in his own handwriting.

They are:
1. Follow Instructions
2.Take "No" for an answer
3. Accept Consequences
4. Disagree Appropriately

When Fred realized I came home he came out of his room and started yelling at me how mean his Grandma is and he is starving. I looked at the clock and it was past his snack time. I asked him if he had his snack at snack time to which he replied, "Yes, but I am still hungry". I know his snack was snack sized and not meal sized, it's not supposed to be. We were about 45 minutes from dinner at this point. I asked him to look at the clock and tell me if it was one of his meal or snack times. To which he replied no. 

Then, Grandma came out and told me what transpired and that she had sent him to his room because he was out of control. Since he was still belligerent and obviously not in control of himself I asked him what his 4 things he was learning were and he spouted them off. I asked him if he was following instructions, he said no. I asked him if he was taking "no" for an answer, he said no. I asked him if he was accepting consequences, he said no. I asked him if he was disagreeing appropriately, he said no. I then told him to go back to his room. The tantrum began again and went on for the next hour as he kept coming out and I asked him his questions while I cooked dinner. He would yell and go back into his room and throw something and do a jumpstomp and I knew he was still not in control of himself.

I want you to know that I did not yell and I did not give in. I am determined that this child will grow up learning this base foundation. I read so many things about fasd kids grow up not learning base social skills and then they end up in prison because of it. I just want to give my child every chance of a great life. I thought of it this way; did you ever have a record player as a child? I did, and when a record was damaged and playing and coming to the spot where it was about to skip if you just put a little pressure on the arm and pushed on the needle a wee bit to get it to stay in the groove instead of jumping out and going it's own way you could eventually get the skip worn out and have it playing music all the time without the disturbance. I think for the fasd brain it's the same way. Keep on the same track until that track is worn in and they are playing beautiful music.

After a while it was quiet in his room and I asked him if he was in control of himself. He said Yes. I said good, now here come the consequences: Pick up all your things and put them away... and he did. We then talked about why he was sent to his room, why he couldn't come out of his room until he changed what he was doing, why he had to pick up his room all by himself. When he is calm he can be rational and make good choices but when he is angry/upset/hungry he just reacts. We talked about the difference in the things that he is allowed to do depending on his choice of behavior; play freely or sit in his room. I am hoping these tools we are implementing will help us shorten the time between reacting and purposefully acting.

After dinner he apologized to Grandma and she hugged him up. He took a shower, took his medicine and slept all night.

Here is the book the therapist recommended: A House United: Changing Children's Hearts and Behaviors by Teaching Self Government

Peace,

Fred's Mom

PS: the difference between a meltdown and a tantrum is that they can't stop a meltdown but they can stop a tantrum to talk to you before they go on with it again.

Spectrum Things to Buy

Fetal Alcohol Spectrum Disorder

Birth Defects.org

Full Definition of SPECTRUM

A mothers story in this journey:

This book was suggested by Fred's therapist;  A House United: Changing Children's Hearts and Behaviors by Teaching Self Government

Photos by Kirsten Hughes Photography

First Therapy Session

November 24th, 2015: We went to our first therapy session with a nice lady named Marie. Marie is an adoptive parent of several special needs children. We chatted a bit while Fred was outside, talking about Fetal Alcohol Spectrum Disorder. How it came about and a few of things I know about Fred's early babyhood. She asked about some of my concerns and I told her that because of Fred's lowered comprehension, impulsiveness and the fact that consequences have no impact on him I have great concerns for his future. That even with my child development foundation I was at a loss and I needed more parenting tools for my life bag.

Fred joined us and she chatted with him a bit about who she was and why were were here. She asked him if he had any issues he wanted to bring up and he said, "I am always mad at my mom because she won't give me my own way all the time." She got a good idea there about what goals we needed to work to accomplish.

The first thing she wants to work with him is anger management.

Secondly she gave me a book title to find and read. Here is the link: A House United: Changing Children's Hearts and Behaviors by Teaching Self Government

Here is the basic list of accomplishments from the book.:
1.) Follow Instructions
2.) Take "No" for an answer
3.) Accept Consequences
4.) Disagree Appropriately

Fred was given the "assignment" of writing a list of facts; things about him that were good & true, Marie led him through the first one. "I am a good person". I will write out the total list when it's finished.

One of Fred's consequences for his actions used to be to sit in a chair. We got away from that when we moved because most of the extra chairs were still in storage and it wasn't quite as convenient and I wasn't sure it had any real impact and I forgot about it and got out of the habit. Anyway, we are going back to sitting on a chair as a consequence. I will let you know how it goes.

We will see Marie every Tuesday for a while. I probably won't post every week about it exactly but I wanted to have a starting point for me to remember.

Thanks,
#fredsmom
#fasd
#preventfasd

Follow Fred on Facebook