How to Talk to Your Child With FASD About FASD

2005 Teresa Kellerman

How one explains FASD to the child depends on the extent of their disabilities, their level of understanding, their past experiences, the relationship you have with them, etc.  There is no one right way to do it.  I do have some suggestions though, of what is important, based on consultation with experts, other parents, and my own personal experience.

First of all, the earlier you start, the easier it is.  Some parents wait too long, and then they do not have the courage to discuss it with the teen, who eventually gets into serious trouble.  Start young!

What I suggest is to take advantage of the many teaching moments that happen to pop up on a daily basis - the forgetting, the impulsive action, the bad judgment, the immaturity.  Since children with FASD become frustrated with themselves and others and difficult situations, there are always opportunities to explain why they are having a hard time. 

John would say, "Oh I'm so stupid!"  I would say,  "You're not stupid, John, it's just that your brain is not working right now.  Maybe later or tomorrow your brain will work better again.  For now, let's take a break, and do something easy or fun."

When he was feeling a little better, we would talk about how he feels when his brain doesn't work, and I would explain in simple terms how the alcohol messed up his brain when he was a little baby still inside his birth mom.  I talk about his birth mom's alcoholism, her inability to control her drinking, her wish for him to be adopted by a family who could care for him.  I talk about FASD in a matter of fact way.  I talk about his birth mother without judgment.  John had no shame or embarrassment about having FAS because I did not have any shame or embarrassment about it. 

My attitude of acceptance is reflected in John's attitude of acceptance.  I was always truthful with John.  This is important in establishing a strong trust relationship.  Later John would need to trust me to help him make decisions that would keep him safe.  Trust would later help him accept the restrictions that keep him from getting into serious trouble.  Having this relationship of trust made it easier for him to come to me when others would tease or bully him.  These were just more teaching moments where I could help lift his self esteem while I help him recognize and understand his strengths and needs.

When he would get frustrated with making so many mistakes and having so many difficulties, he would say, "Why do I have to have FAS?  It's not fair."

I let him be angry about having FAS, then I explained to him that EVERYBODY has problems or disabilities of some sort, and the few that don't have any, will have eventually.  I talked to him about hidden disabilities, that other people might have that he may not be aware of.  I talk about the friends or neighbors or family members who have cancer, or diabetes, or migraines, or arthritis, and how that affects their life and we don't even notice. 

When he says he feels different from others, I let him know that he is different from non-disabled people.  But I also tell him there are thousands, of other people with FASD who experience the same frustrations, who also need extra help and guidance and supervision.  Belonging to a local support group will not only help parents cope, but can give the children a valuable chance to learn that they are not alone, and that others have similar struggles - and success.  It's not the worse thing in the world to have FASD.  

I tell him that everyone has talents too, and we talk about what natural gifts he has, and how everyone has some special talents, and how nice it is to do well in these special areas, and how good if feels to have that success.  We talk about how we can make the most of these gifts and talents.

Then we might get back to all those people with invisible disorders.  The person with cancer might have to go through chemo, not fun.  A person with diabetes has to be on a strict diet and might have to get injections every day, not fun.  A person with arthritis might be in constant pain, not fun.

At some point in his maturity, he became angry with his birth mother.  He realized that if she had not consumed alcohol when she was pregnant with him, he would not have all these problems now.  That was okay for him to be angry.  I let him talk about how he felt and we talked about his birth mother's experience and difficulties.  Since I had worked through my grief about this years ago, I was able to help him through his grief without my own anger getting in the way. 

If the birth mother is raising her child, then I suggest some counseling for the birth mother before she talks to her child, so she can work through her own guilt first.  The fear and anger and guilt experienced by birth parents and adoptive parents can become obstacles to the child's success.  I firmly believe in the importance of parents resolving all their past grief issues.

Eventually John came to terms with having FASD.  He is comfortable with who he is.  He is appreciated and valued as a human being, a son, a brother, a friend, a member of the community.  He helps to educate others about FASD.  He told me that he believes his mission in life is to help everyone learn about the dangers of drinking during pregnancy so that other children might be born free of the problems of FASD.

There have been times when John and I have been out in the community, when John has engaged in some socially unacceptable conversation or behavior, such as inappropriately flirting with a store clerk.  With a gentle cue from me, John would stop himself, then would apologize to the clerk, and explain why he has difficulty with social interactions, always warning her, "Don't drink when you are pregnant, so your child does not have to deal with all these problems like I do!."  Some people chuckle with amusement or perhaps with discomfort in the face of such self honest statements.  But everybody learns, and maybe another case of FASD is prevented.

When children get older, we can explain FASD in more detail.  There is an article that I wrote for people who need a simple explanation of FASD, called The ABCs of FASD:

Story told by Kari Fletcher (when the local news reported on the death of a baby accidentally smothered by a nursing mother who had been drinking and fell asleep on her baby):

I decided to take this opportunity to talk to my 7 year old son again about alcohol and how bad it is.  I told him that there was a mom who loved her baby very much but she had been drinking alcohol before she snuggled with her baby.  I told him that she drank the alcohol and it made her very sick and very sleepy and it made her fall asleep on top of her baby.  I told him that it wasn't like the way I sleep or the way he sleeps because the alcohol made it so she didn't wake up when her baby needed her help.  Then I told him that her baby died and she was very sad now. 

I went on to tell him again about how alcohol went into his brain before he was born and I told him how sick it would make him if he ever drank it. 

 He then said, "Can you write that down for me?"  and I asked "Write what down?"  And he said, "Write down that I can never drink alcohol so I don't forget." 

I promised him that I would keep reminding him as he grew up that he should never drink alcohol and he said, "But Mom, you and Dad will die someday.  Who will remind me after that?"  He spoke the words that haunt me each day...but I smiled and told him that my job and Daddy's job is to make sure that he has lots of helpers to take care of him if we die before he does.  He then said, "My birthmom didn't know how bad alcohol was, did she?"

What an honest and mature conversation my little guy and I had today...he makes me so darn proud.  We need to use each and every one of these opportunities to have "teachable moments" with our kids.    ~ Kari


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