The F in FAS Does Not Stand For Fun

Recently I asked my readers what they wanted to hear about. A handful asked me to write about Fetal Alcohol Syndrome, what it is, and how it affects Sydney and our family.

One drink is too many.

When a woman is pregnant, any alcohol consumption has the potential to hurt her developing baby. Depending on the week, and even the day, of development and the amount of alcohol that the mother consumes, the baby may be harmed in numerous ways and to various degrees. There is a potential for brain damage, as well as physical deformities. I’ve been told the area of the brain most affected by alcohol is the frontal lobe. The frontal lobe controls impulsivity, judgment, language, the ability to plan ahead, and problem solving, among other things.

Fetal Alcohol Syndrome (FAS) is the only birth defect that is one hundred percent avoidable and completely controlled by a biological mother’s choices. FAS is not curable and the child does not outgrow the damage done. It is a lifelong disability. A child can be diagnosed by facial features and/or behaviors but many doctors will not give a diagnosis without a written statement from the birth mother saying she did consume alcohol during pregnancy. Some, however, will and because so many children with FAS are adopted and so many birthmothers are unavailable or unwilling to help, the doctors who will give a diagnosis without a birthmother’s statement are so appreciated by adoptive parents like myself.

Sydney has physical features that point to FAS. The doctors at Children’s Mercy Hospital (CMH) said Sydney’s eyes, ears, head size, and a few other abnormalities all pointed to FAS. Her extremely high pain threshold, hyperactivity, and other behaviors were indicators as well. Until we began medication for hyperactivity around age seven, Sydney was difficult to keep safe. The medication has been life changing. Sydney still has FAS but taking medication to help with the hyperactivity and her attention span has helped her to be able to learn. She is reading at grade level now! Math is the most difficult subject for Sydney at school. Math falls under problem solving, which is controlled by that frontal lobe.

Many people have asked me how Sydney’s FAS affects us the most. The hardest part for our family has been the impulse control issue. But that may be like saying the hardest part of being blind is not being able to see. Impulse control affects everything. Without impulse control a person does not think before they speak or act. As a matter of fact, if a thought comes into their head, even one that is obviously a very bad one, they may act on it. If someone says, “Don’t touch that stove” then the person with no impulse control is probably going to reach right out and touch that stove. The “don’t” in that instruction does not register but the “touch” and “stove” sure do. Without impulse control a child cannot sit still or focus on anything. Their mind is constantly wandering from one thing to the next. They cannot learn how to solve problems, and sequencing is a mystery to them. They cannot control their behaviors or learn cause and effect, and punishments will not help. It is beyond their control. They absolutely cannot help any of it.

Attention Deficit Hyperactivity Disorder (ADHD) and anxiety disorders like Obsessive Compulsive Disorder (OCD) are often comorbid with FAS. Some children with FAS also have Reactive Attachment Disorder (RAD). Because so many of these disorders have similar symptoms it is hard to know where one begins and the other ends. So many children with FAS are adopted and there are often adoption issues or past abuse or neglect too. Sydney has been diagnosed with FAS, ADHD, and an anxiety disorder.

We are actually very lucky in a lot of ways though. I have become acquainted with other parents in Facebook groups who have children with FAS and I am hearing about horrible behaviors and issues that we have not had to deal with. Things at our house could be so much worse. I hear about kids that hit, kick, spit, curse, lie, steal, threaten, and abuse. We’ve got almost none of that going on. People assume much of it is about environment and Sydney is doing so well because of parenting, but I do not think that is it. Really good parents are dealing with a lot of the kids who struggle so much more in life than Sydney does. FAS is a spectrum disorder and some kids are handicapped in ways others have not been, depending on the amount of alcohol consumed and the time of the consumption. Also, alcohol exposure in the womb affects some babies more than others. I read of a set of fraternal twins who were affected differently by their mother’s drinking. Although both were obviously exposed equally, one twin was much more handicapped in life than the other.

One of the first things I read after Sydney’s diagnosis was that children with FAS do much better in homes with reasonable expectations. I had to learn to parent Sydney much differently than I have parented my other children. In the beginning, before I understood Sydney had a disability, I made demands of her that were unrealistic. Once I understood that she was doing the best that she could do, our lives became so much better. Sydney’s doctor has told me that a good rule of thumb for kids with FAS is to divide their age in half and treat them correspondingly. Of course, they are not all the same and some of these children are functioning at a level that is equal to their peers in many aspects. On the medication for the ADHD symptoms Sydney almost appears as mature as her typically developing peers at times.

I have noticed a few of the parents I have met online seem to be setting expectations for their children that are unrealistic and punishing their children for the lack of impulse control. Holding a child with FAS to the same standard you hold his peer to is unfair and even cruel. No one would consider punishing a deaf person for the inability to hear and a child with FAS should not be punished for the brain damage they cannot help. A child without impulse control may steal and lie on a regular basis. They do not steal because they have a need and they do not lie because they even have a motive to do so. They do it because their frontal lobe is damaged and they are just acting on an impulse. They have no plan. They have no real agenda. They have no ability to think about the consequences of their actions.

Does that mean that we just give up and stop trying to teach our child with FAS? Of course not! We keep trying and sometimes after hundreds of repetitions, we see a new skill mastered or a new lesson learned. But unfortunately, sometimes, even the skills we think are mastered, disappear and we have to start over again because that is the nature of FAS. We take baby steps, set small goals, and celebrate minor victories. Also we do not set our child with FAS up for failure. If a child with FAS loves chocolate and you do not want her to eat more than one chocolate bar then do not leave a package of six chocolate bars on the kitchen counter! If a child with FAS has trouble staying in bed at night then put an alarm on her bedroom door. If a child with FAS hits her baby brother then do not leave them alone in a room together.

There was a time, for a long time, when I was resentful of Sydney’s birth mother. I blamed her and despised her for the life sentence she had given Sydney… and myself. Because truthfully, Sydney’s life long disability will be with me until the day I die as well. I do not really feel that resentment any longer. I only feel pity. I feel pity for a woman who was probably so addicted to alcohol that it controlled her. I feel pity for a woman who was probably in a horrible situation. She had two children already that she was unable to care for adequately and was about to give birth to another that she would be unable to keep. Perhaps she turned to alcohol to ease that pain. I think I probably let go of the anger and resentment toward Sydney’s birth mother about the same time I was finally able to let go of a lot of my unrealistic expectations for Sydney and truly bond with her as if I had given birth to her myself. If you have not already, now would be a good time to read the post I wrote recently called “Falling In Love With Sydney.”

Other posts you might like to read about our life with FAS: Sydney, Age Six and Teaching Sydney.

Find us on Facebook at Quirks and Chaos. Find us on the web at www.quirksandchaos.com

Tate's wisdom x 10

These are things that made me giggle this past year or so. I wrote them down and put them in a file.  I went through them today. What do you think? Funny or not?

1. Tate’s bank was full of change. I said, "Want me to take this down to the bank and get your money counted? They will give you dollar bills for the coins." He said, "No thank you. The coins are really high-strung. We don't want to scare 'em."

2. Tate saw a box marked FRAGILE and asked, "Hey, why do you have a box of Fragile?”

3. I was heading into a store with Tate and he said, “I don't see any robbers.” I asked, “What does a robber look like?” He said, “They’ll be wearing black uniforms."

4. My older son and I were discussing spy / detective type things. He said, "I know a good way to tell if someone is following you?" Tate piped up with, "You look behind you."

5. Tate got into the car after school and as usual I asked, “Did you learn anything today?” He said they had learned about Christopher Columbus. I asked, “What did you learn about him?” Tate responded, “He’s dead.”

6. My kids were trying to find a show they could agree on. My daughter said she’d like to watch The Bionic Woman. Tate said, “Anna Biotic Woman?” I said, “Antibiotic? This is bionic not biotic” and I explained what bionic meant.  Tate said, “A woman Superman? I don’t think so.”

7. I was sitting with Tate. He broke the silence with, "Hey, how 'bout we talk about Count Dracula?" I said, "Um okay, what can you tell me about Count Dracula?" Tate replied, "He's been dead since 1938.”

8. Tate’s teacher tried some word association with him. She asked what a fork and spoon had in common. He said, “They ran away together.” (I think it was actually THE DISH who ran away with the spoon!)

9. I got a perm and then picked my kids up from school. The oldest one said, "Did you change your hair?" I said, "yeah." Tate jerked his head around and asked, "What did you do with your old hair?"

10. Tate was studying Egypt in Social Studies. He told me that the Egyptians had build pyramids with their feet. It took me a while but after some back and forth discussion, I finally understood. My literal kid may have become confused when the teacher explained the height and width of the pyramids, in feet.

And a bonus: Our cat Tom was looking in the door. Tate does not like cats but they seem to adore him. Tate's brother Levi began to try to convince me to let the cat inside. Levi started with, "that cat deserves.... " then Tate cut him off with "....a ticket to the animal shelter."

Tate's little sister Sydney was being tormented at school by a boy who kept calling her “gross.” I told her to pretend the boy was invisible and not to interact with him at all. Tate was truly trying to help and piped up with, "I have an idea. Go to school tomorrow and pretend you are not gross."

Getting to know Charlotte

Last evening I attended the Newtown Kindness Awards Ceremony in Connecticut. But before I tell you about the evening, I want to rewind here for a bit: I Googled to learn who Charlotte Bacon was on December sixth, when I received an email about Tate’s nomination for the Charlotte Bacon Kindness Awards. I did not learn much about Charlotte’s life when I searched the Internet but I did see stories about her death. However, last night I got a pretty good feel for whom Charlotte really was. I now know she was funny and sweet and often involved in mischief. I know her favorite color was pink. I know she wanted to be a vet some day, she loved dogs, and had a collection of stuffed dogs. I know she was loved by many people and adored by her own dog named, Lily, whom she loved in return. All evening I kept thinking, “She sounds a lot like my Sydney.” They would have been friends had they known each other.

Although I did not know who Charlotte Bacon was, ironically, I could recall the name of the young man who took her life. How wrong is that? The reason I remembered his name is because three years ago the media covered the story for days, plastering his name and face everywhere and alleging the reason he committed the horrible act was because he had autism. Our family is affected by autism and when autism is in the media it gets my attention. How much better would it have been for the media to remain very quiet about the name of the killer and  instead be covering the kindnesses that have happened as a result of that incident? I now know there have been many. You might like to read more about Charlotte and the Newtown Kindness awards here: http://www.newtownkindness.org/who-we-are/meetcharlotte/

Charlotte’s parents would like her to be remembered for her life, not her death. To honor Charlotte’s life and to keep her memory alive they celebrate her birthday every year in an amazing way. They recognize children for their acts of kindness. Tate was nominated for a kindness award with his friends Ethan and Jordan after I wrote a thank you note to those boys and their classmates for their friendship with Tate. That thank you letter was published, and People Magazine did a story on the boys and the lunch buddy program. That article got the attention of a nice lady named Lara who nominated the boys for the award. Although thousands of children were nominated, only around forty were chosen to receive awards.

On stage

Seeing Tate standing on the stage tonight was such a proud moment for me. But, it was not only about the kindness factor. Tate has autism and before the ceremony began Tate was anxious. Tate has a lot of sensory issues and he was aggravated because I had dressed him in a shirt he did not like. He was annoyed because I had made him leave his treasured hoodie and cap at the hotel. He had just found out that his beloved watch was an hour off due to the time change, but he couldn’t decide if he wanted it on Connecticut time or Kansas time. And to top it all off, I could not tell him exactly what to expect or give him a solid timeframe for the evening’s events so he was nervous. Needless to say, Tate was stimming. Tate’s stims (stereotypic behaviors) can cause him to appear pretty odd to people who do not know him or understand autism. He grimaces and stiffens his arms and he talks about movies. For the hour leading up to the ceremony I must have heard several dozen times that the movie “Home” comes out March 27^th in theaters and Tate reviewed with me who does all the main characters’ voices. Then he would rotate something about “Big Hero Six” and its DVD release date into the mix. I had resigned myself to seeing Tate stand on stage and stim. I knew everyone would be understanding. After all, we were in an auditorium with four hundred people who were promoting kindness. But, I still reassured and coached as best I could, hoping he’d be able to pull it off.

Shortly before the ceremony, he decided it was okay to “borrow Connecticut time” for his watch. That helped. We took a walk and got a drink of water. That also helped. Then I asked one of last years winners, Ryan, a very kind young man who we’d just met, to tell Tate exactly what to expect when he went onto the stage. That helped too. And, because we sat in the audience and listened to some great music for thirty minutes before he had to take the stage, Tate was much more relaxed when it was time for him to receive his award. He appeared calm, cool, and collected, and sauntered right out onto that stage like he owned the place. No one would have suspected that ninety minutes before he had been a wreck. And that is one of the reasons I was so proud. The amount of courage it took for Tate to go out on that stage was tremendous compared to most. But then, Tate is used to doing those things that come easy to the rest of us, while fighting all kinds of battles that we cannot see. The feel of a shirt, the insecurity of leaving his cap behind, the noise level, and dealing with people whose expectations are a mystery to him, are all things that make getting through the day so much more challenging to Tate. But he just keeps stepping up, trying to please us, and do the things we ask of him. He only had a limited understanding of what the award last night was about and he would rather have been watching television at the hotel but he did what I required of him and he did it well.

Getting Ready for the ceremony

You might wonder why I thought it was important for Tate to be at the awards ceremony and accept the award on behalf of himself, Ethan and Jordan. Tate did not raise money for a great cause, he did not donate food to the homeless, or do any of the other great things many of the children there had done. Tate is making a difference in other ways. Tate is showing kids with autism and their parents that friendship is not an illusive goal but something that can really happen. Tate has friends in Ethan and Jordan and several other children at his school. It took a lot of hard work to make that happen. The lunch buddy program was one of the key ingredients in creating Tate’s friendships. That can happen in other schools too!

Jordan, Tate, and Ethan

Ethan, Jordan, and others have sacrificed a lot of time and effort to teach Tate social skills and in doing so they had learned some things from Tate as well. The truth is: Ethan and Jordan were nominated for this award and did not want to accept the nomination unless Tate was included. Lara recognized the fact that Tate was not the only benefactor in their relationship and included Tate in the nomination at his friends’ request. I wanted Tate present to accept the award and help spread the message that kids should extend kindness to everyone, including their classmates with disabilities like autism. I wanted Tate present to accept the award and help spread the message that kids with autism can learn social skills, be kind, and make friends in spite of their disability. Ethan and Jordan had worked hard, but when it comes right down to it, so had Tate. Things that come so natural to the other boys are very hard for Tate but he is doing them!

Tate's Medal

I could have let Tate decide whether or not he came to Connecticut to accept the award, and we would have stayed home. After all, it was HIS award. But if I let Tate decide, he would rarely leave the house for anything. He would not have developed the skills he needed to be a friend or have a friend! I have to constantly remove Tate from his comfort zone and his comfort zone just keeps getting bigger and bigger, despite autism's best efforts to limit Tate. If you are a parent of a young child with autism reading, please understand: Keep pushing. Keep advocating. Keep mentoring. Do NOT stop. Do NOT allow your child to choose what is best for him or her. Do not allow autism to decide what is best for your child. This is hard work but the stakes are so high! Take it from an older mom with a boy who has done (and is doing) the hard work, it pays off!

I am very thankful for Charlotte Bacon’s life and her family. I am thankful Charlotte is being remembered in this way. I’m so honored Tate was chosen to receive a kindness award, and I’m determined not to forget Charlotte. Many thanks to the Bacon family for making the world a better place. The impact they are making is extraordinary. They will probably never realize the impact they have had on my life.

This is the article that led to Tate's nomination: A Lesson In Kindness by People Magazine