How To Convince Others That Your Normal-Looking Child Isn’t Normal.

4 action steps you can take to build a bridge

If we had a dollar for every time someone said, “Well, he doesn’t look like he has Fetal Alcohol Spectrum Disorder,” we’d be millionaires. The truth is, our child’s disorder makes it hard to see the forest for the trees.

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I remember the first time my son stepped up to the plate the first year he played baseball. He held his bat like a pro. He not only looked like a miniature major league player, he acted and performed like one. With one swing, he sent a fastball up the middle of the diamond, straight into center field. When the center fielder bobbled the ball, my son had the wits about him to chug ahead, safely into second base. The crowd of parents, including us, went wild. One father turned to me and said, “You got yourself one heck of a ball player there!”

Fast forward to the end of the game. I stood by the second base bag, equipment bag slung over my shoulder, and waited for my son to make the choice to walk off the diamond by his own power. He scowled at me, with arms folded, not budging, just beyond the dirt of the infield. He had called me every name in the book, told me I was stupid, and shouted “Leave me alone” so loudly that the head coach walked over to see if everything was alright. I assured him it was.

“You played a good game buddy,” he said reassuringly to my son. “We just always like to switch it up and make sure everyone gets some playing time.” My son held his position. His upper lip was curled, there was snot dripping from his nose, and he glared as if he wanted to kill us both. The coach then turned to me and said, “This happens often with the boys when we first start the season. They’re disappointed when we move them from a position they love or get used to, to another one. He’ll get used to it though.” If only that were it, I thought to myself.

After weeks of my son behaving like this, and the good-hearted coach trying to reassure him unsuccessfully, I finally decided to sit down with him and explain Fetal Alcohol Spectrum Disorder. I shared that while my son looked normal, and even acted normal (most of the time), he suffered from a disorder that has caused damage to his brain, specifically the part where reason and logic exist. He looked at me cross-eyed.

“Well, he looks like a normal little boy,” he said. “I know,” I replied. “The diagnosis he has is Alcohol-Related-Neuro-developmental-Disorder which is under the umbrella of FASD.” He looked puzzled. I felt if I said, “He has autism,” or “He has Down Syndrome,” he would have nodded immediately. Unfortunately FASDs don’t have a voice like those special needs do.

Present but hard to see.

We learned a lot from that experience with the coach and many others like it- IEP meetings, church youth groups, football, you name it. We wish we could go and redo many encounters with folks who just didn’t understand how a kid that looked as normal as mine (charismatic, perfect smile, life of the party, eloquent) could not be normal. In retrospect, we’ve discovered 4 action steps that families like ours can take with coaches, teachers, neighbors, etc. to help them better understand our children…

  1. Share the facts. We can’t begin to count how many IEP meetings we’ve gone into with printed material on FASD’s. Our good friends over at NoFAS.org and NTI Upstream do an amazing job of providing material, even a great documentary, on the facts of FASDs. Take this content with you, especially if it’s your first meeting with your child’s school, coach, or youth pastor.
  2. Honest conversation. Carve out time to sit down and speak honestly about your child’s disorder. Begin by saying something like this- “I need to share the reality of {Name} disorder with you. I know it’s hard to see, but he or she deals with Fetal Alcohol Spectrum Disorder. It happened when he or she was in their birth mother’s womb. It has caused {Name the behavior}. Here is some literature that is very helpful in understanding. The way you can help us is by {Name the helpful move the coach, teacher, or youth pastor can make}.” Obviously the conversation will be more 2-sided than this, and probably longer, but these are the critical points you need to make.
  3. Expert perspectives. Share some of the leading expert perspectives on FASD. One of our favorite FASD experts is Dr. Ira Chasnoff  from NTI Upstream. He’s a leading researcher and expert in the field of FASD. You can learn more here. If you have a doctor or therapists who gets it and can be a voice for you, by all means, use their perspective when communicating with people who do not understand.
  4. Move on. There’s a point when enough’s enough! You’ve shared the facts, had the conversations, even shared blog posts and articles from doctor’s, clinicians, and writers. But the person just won’t get it. At this, you can be sure that it’s time to move on. Pull your child from the team, stop dropping them off in that Sunday School class, request a different teacher,

Loving through the abnormal.

We love our son. It was hard at first to admit that he wasn’t normal, even harder to have those conversations with him. But in-spite of this, we love him and we want what’s best for him. But the same is true for the people surrounding him. His teachers, coaches, small group leader at church, even the parents of neighborhood kids he plays with. We want the best for them too. They’re not our enemies. They are friends and we will do everything in our power to bring them onto the same page with us, even if they aren’t in the same boat as us.

Our over-arching goal is always to build bridges and find ways to partner. Unless and until we are pushed to the absolute limit with continual misunderstanding, we will make this our goal.

Question: Have you encountered misunderstanding people when it comes to FASD or any other disorder? How did you handle explaining or enlightening? Share your story with us. You can leave a comment by clicking here.

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  • Melissa Kugler

    Thank you for sharing this. In those moments when your kiddo is spouting off how do you maintain composure? Is there a consequence for the negative behavior even though there is an explanation as to why he is behaving that way? I have many friends that have kiddos with the same condition and my son, although it is not alcohol related, suffers from childhood trauma and displays some of the same behavior traits at times. We struggle as parents with when to discipline and when to just walk away?

    • Oh you are so very welcome Melissa. We know how hard that battle is. Hang in there.

      • Murray Coulter

        It can be a challenge getting a diagnosis, especially if you are looking for the wrong thing. Our older son is very bright. He saw able to read and count by the time he was four. As he got into second grade, he was beginning to struggle more. We were looking for something that would challenge him more. We were referred to a neuropsychologist who worked with FASD. We were stunned as she went over the list of symptoms, and it was, yep, yep. Do you know our child?
        I took a while to get the report completed, but led to the process of getting an IEP fairly quickly.
        As noted above, contact professionals for referrals.
        We were told if you can get to San Diego, Dr Ed Riley will do the assessment for free. We have not verified this offer. The website is http://livingwithfasd.com/edward-riley/#sthash.GOAI0pO6.dpbs

    • Allisonm

      There is a difference between misbehavior and dysregulation. When my son misbehaves, we use logical consequences to help teach him cause and effect. Our son had years of severe developmental trauma with extreme behavioral expressions of his distress. His brain did not learn how to regulate. Infants learn how to do that through having their needs met consistently and through co-regulation by primary caregivers. When my son is regulating like an infant or toddler, despite being a tween, I meet his needs and (do my best to) stay regulated myself so that he can use co-regulation to help him get regulated. There are often natural consequences to his dysregulation, like the opportunity cost of the time taken up by meltdowns or the damage to things he cares about, but I don’t pile on consequences for being dysregulated. I wouldn’t do that to a very young child, expecting to teach him a lesson, so I don’t do it to my son when he is having a hard enough time regulating in the first place.

      I don’t ever “walk away” in the sense that I continue to work on strengthening our relationship and working toward better regulation and coping skills, but I do not try to discipline (teach) when my son is in a state where he can’t benefit from it. I don’t punish him for being unable to regulate. It’s over when he regains regulation. Affirmatively meeting his needs and helping him regulate and teaching and practicing coping and social skills at times when he is able to learn them is working for us after years of being told by experts that our son was the most severely dysregulated child they had ever seen and probably couldn’t live with a family. We were well into our seventh year as a family before life stopped being an endless rolling crisis and well into our eighth year before we saw consistent ability on our son’s part to regulate and cope with everyday life. The experts said we’d never get this far, but our son is tough and determined.

      One of the hardest parts for me as a mom is staying attuned enough to my child (who so often fights me at every turn) that I can tell whether he is misbehaving or dysregulated. I started out with a traditional parenting mind frame with rewards and consequences, but, being based on a normal brain and typical childhood, that got us nowhere fast with our son. He was either asleep or raging. I learned to err on the side of assuming dysregulation. As I got to know him, I realized how hard my son was trying to cope, but that he truly was like an infant in his ability and living in a world that seemed scary and out-of-control to him. When I started understanding what it’s like to be in his skin, it got easier to know how to respond in a helpful way. Now that he is better regulated, the misbehavior is much easier to spot and handle and he is able to learn from it.

      It can be very hard to ignore the real and perceived disapproval of bystanders who have little or no understanding of our children, but I can’t endanger my ability to help my child heal and rewire his brain around all of the damaged parts as best he can by doing what I think others expect of a “good parent.”

  • Anna Lopez

    I know this is my child, I have done so much reading about it. But I have been unable to even find professional help that sees it. Where we live, there are no trauma/adoptive therapists. We do go to a general family therapist who provides basic support. But how do I go about getting a diagnosis? Do you go through your pediatrician and just ask them to refer you to a psychiatrist, how does it work? The pediatrician just thought it was ADHD. I think her therapist just thinks she’s going through normal growing pains.

    • Anna, we totally understand. For years we searched too. We finally found someone here in Central Indiana where we are from, but they are few and far between. I would encourage you to visit NoFAS.org or NTIupstream.com for resources on finding a clinician that can diagnose. And, for the record, pediatricians who diagnose FASD or ARND as ADHD are a dime a dozen. That happens all the time. Happened to us with our son a decade ago. 🙁 Hang in there.

      • Allisonm

        We’ve been through the misdiagnoses and people who thought that in a few months, we’d be looking back and laughing about our kid’s adjustment period. Our pediatrician was actually pretty helpful. She kept reporting that our children were at risk because of their histories. But she had no thought of trying to treat them herself. Most of the people who treat developmental trauma and fetal alcohol and drug related disorders are found in the public mental-health system because that system treats foster children, who are the largest population of children suffering from these issues. Sometimes the right resources are found in unlikely places or are mislabeled so that they are hard to find. Our most meaningful therapeutic help came from an EMDR/trauma therapist who had never worked with children before. She turned out to be really gifted at working with our children. I went to classes offered by the public mental-health systems, foster parent groups and anywhere else I could find them, that taught me how the system works in our area and how to get what we need from it. Each state’s system is different and local systems can differ within states. Sometimes it’s a matter of knowing how to get referrals or which “magic” words will unlock access to services that will change our family’s life. Also, no one wants crises to occur, but when they do happen, it is good to be prepared to use those sentinel events to get a higher and more appropriate level of treatment and services to help our children.

  • Allisonm

    I learned from another mother of a child like mine that in addition to being armed with facts and literature, I could encourage others to act in ways that are more helpful to my son by describing the way my son experiences the situations they are in with him. As much as it is hard to be the mom of a kid who is wrecking a classroom or melting down in public, it is harder to be the kid who is doing it. When people understand more about the inner world that is being expressed in extreme behavior, they typically want to help in meaningful ways and are much more receptive to information that enables them to be part of the solution. They become positive allies with our son and us in the battle for our son’s heart and mind.

    • Allison, this is a great perspective. Thank you for sharing!

  • califmom

    We are on this same journey. Our son is now finishing 7th grade and we are deciding where he will go for 8th grade. We are hopeful the public school will provide special ed resources for him that our private Christian school has been unable to provide. For those of you struggling with your children, I high recommend Heather Forbes’ books and webinars. They saved our sanity and provided us with a different perspective on parenting our son: http://www.beyondconsequences.com/

    • Allisonm

      We’ve benefited a lot from Heather Forbes’ materials and classes. Our son is a year behind yours and will attend school for eight hours per week in the fall–all in a special ed classroom. He wanted to go full time last year, but we had to reduce his number of days and hours per day with each successive IEP meeting until we got to the one hour, four days a week he could tolerate successfully. Our son is so much better regulated now and at his eighth IEP meeting of the year, we decided to shoot for two hours per day next year. I love Heather’s reminder that a scared child looks just like an angry child. So much insight comes along with that realization.

      • Murray Coulter

        This looks like it might be helpful. We just received our second FASD diagnosis earlier this May. Our older son has just FASD, our younger one has FASD, with an intellectual disability (bottom 1%). Most of the time we’re glad that he is verbal. 🙂 It can be a long haul getting diagnosis, and that just opens the door. Diane Malbin;s work is helpful as well.

        • Allisonm

          Thank you, Murray. I’ll have to look for Diane Malbin’s work.

          • Nica10

            I 2nd Diane Malvina and Jeff Noble also … Jeff & Diane are both on fb too.

  • Stacey

    How did you get the FASD diagnosis? My son, 8 years old and adopted in January of this year, went to a endocrinologist due to his small stature and she suspects FASD rather than his current diagnosis of ADHD. I’m just wondering the best route to getting the most accurate diagnosis.

    • Allisonm

      Our son was diagnosed through a neuropsychological evaluation conducted by a neuropsychologist (PhD.). A developmental pediatrician (MD or DO) is another professional with the specialized knowledge to evaluate and distinguish between FASD, fetal drug effects, and other disorders with similar clusters of symptoms. Our psychiatrists have deferred to the neuropsych and developmental peds for this diagnosis.

    • Nica10

      We took our children to a geneticist that specializes in FASD. There are special centers all over the US too.

    • Stacey

      Thank you!

    • Love to see the community here. So thankful for everyone of our readers!

  • Freeman

    My son , adopted through foster care, not only has FASD he also had a lead level of 30 when we got him at 18 months old. How do I find answers on how to deal with all of his behaviors??? He turned 14 in January and I am about to lose my mind.

    • Oh my goodness, I am so sorry to hear this. Have you done a google search for camps, resources, or organizations in your area?? That’s how we found lots of resources in central Indiana.

      • Freeman

        Thank You! That is a great starting place. He needs to be kept active to stay out of trouble. I found a day camp that does Mt. Bicycling, which he loves, but it is 1 1/2 hours away so that just isn’t possible. I will keep looking.

    • Allisonm

      You’ve been at this for quite awhile, and I don’t know what you have already tried. If you have not already read Karyn Purvis’s The Connected Child, it is a good place to start. Heather Forbes’ Beyond Consequences, Logic and Control is another one I have found helpful. The Explosive Child, whose author escapes me at the moment, also gave me some good insights into my children’s behavior. The other comments to this post share some other resources, too. Often trauma and attachment challenges are layered in with FASD and other abuse/neglect issues and I’ve found that the interventions that help with trauma and attachment have been helpful with the whole spectrum of challenges our family faces. Behavior communicates the conditions in my children’s inner worlds. Sometimes I feel like a cold case detective trying to figure out what the extreme behavior is trying to tell me. My son with learning and memory challenges can be really hard to figure out, though we have made a lot of progress. It can be hard to parent as our kids chronological (and hormonal!) age increasingly outpaces their emotional and cognitive ages.

      If you are not already receiving services for your son through the department of developmental disabilities or your state’s public mental-health system, you may find help and support there. The more you know about the way those systems work where you live, the more effectively you can get meaningful help from them. I wish you well and hope you are able to get some support and encouragement before you and your mind part company. 😉

      • Freeman

        Thank you. I will look into those books. We are now trying to get him signed up for wrap around services. He just started seeing a doctor at the Kennedy Krieger Institute in Baltimore. He is having him tested but of course the testing site is booked till September. We are on the cancellation list. I just keep trying to figure him out. What works today fails tomorrow.

        • Allisonm

          We’ve had wraparound for years and it has helped a lot. The wraparound model provides support for the family as well as the child. I commend the book Everything is Normal Until Proven Otherwise, written by two of the pioneers of the wraparound movement, to your reading. It is short, but gives a good picture of the wraparound mindset. It has helped me know how to get what our family has needed. True wraparound is a very creative, innovative and pragmatic approach to mental-health services. We had what the book refers to as “big friendly gorillas” in our home for a long time. They were a godsend!

          I can relate completely to your “what works today fails tomorrow” statement. To some extent, that is still true for us. But a lot of that resolved for me when I read the books I mentioned before and started to have insights that led me to frame the challenges we face differently and to ask different questions. That led me to more helpful thinking, which led in turn to more effective responses on my part. My son’s behavior is not the problem. What’s driving the behavior is the problem. I had to find ways to alleviate the things that drive the behavior. That works for today and tomorrow. I hope something I’ve shared about our journey leads you to things that help your family thrive. This is a really hard and often lonely road.

  • Lisa Hoskins

    Thank you for sharing this, I felt like you were speaking directly to me. Our 10 year old son has FASD and is dyslexic. Here we are at the end of the school year and his self esteem is in the gutter. 😞 While he has an IEP for his dyslexia no one in our school district is trained to actually help him learn to read, write, and spell. His behavior issues are always mentioned in his IEP but with no real modifications or accommodations to help him. He spent the last two days in detention, because he asked his teacher if someone could help him write a full page report. She told him no, he had to do his own writing. As he walked away he called her a “butt.”
    While we don’t condone being disrespectful, his IEP does state that he is to have alternate means for writing anything over 3 sentences. I didn’t stand up for him on this one, and now I feel so guilty for not speaking up! Actually, his teacher was a butt and just hurt his confidence that much more!
    Today at school is “field day.” It’s a whole day of outside games and competitions for the entire school. He asked me if he could just stay home. He knows from past experience he will probably get in trouble and be removed from the games.
    We have had him since birth, through foster care/adoption. We have 5 days of school left, it can’t come soon enough for me. I feel like school is breaking my child’s spirit.

    • Allisonm

      In addition to having fetal alcohol and drug effects, my son has a severe emotional disability that started developing in the womb when his mother was the victim of domestic violence. I was very frustrated by my dealings with the school in our old state, but have had much a much better result with our new school district. My approach with the new district has been to remind them that my son’s behavior is not the problem. His behavior is trying to tell us what the problem is. There is something happening that he can’t tolerate gracefully. He can’t learn in that environment, so we, as the adults in the room, have to figure out what is intolerable and change the environment to one that is tolerable and where my son can learn. If he could change himself into a normal kid, he would, but he can’t. We have to create an environment in which he can change and move forward. My son has far too much practice at falling apart in situations he can’t tolerate. He needs practice at being well-regulated, which will only happen if he spends a lot of time in situations where he can regulate successfully. Once we get there, we can add slowly to his stress level and continue only after he has mastered the new level. This has taken a lot of trial and error and creative problem solving by the school and us, working together, but we have arrived at a plan that is actually working–though it is far from a typical IEP. When there is going to be an activity or situation (substitute teachers) that will be problematic for my son, the school lets me know ahead of time and I decide whether to send him to school or keep him home, based on what I think is best for him.

      • Lisa Hoskins

        Wow Allison,
        Thank you. This sounds so familiar. We have also considered moving someplace that would be better for him. When you mentioned substitute it was like ding, ding, ding! That is a huge trigger for our son also. Even a substitute bus driver can bring it on. Anything out of his normal routine we can expect the unexpected. We still cannot drive him to school he has so much separation anxiety, we can pick him up but he will worry himself to death if we tell him we are going to take him. Glad you are getting some help.

        • Allisonm

          It was hard to come to grips with how disabled our son actually is. Once I really got it, I stopped trying get him to fit in with everyone else’s program and stepped entirely out of the box in search of what he needs. His school team, mental-health team and I sat down and drafted a plan that we thought would serve him well–without any thought about how that fit with what other students were doing. Last semester, my son got to where he could tolerate four hours of school per week. But we had no police involvement, running away or aggressive behaviors, which we had seen a great deal of before we pulled back enough to allow our son to get used to a new “normal” of being able to regulate. With six months of substantially better regulation in his immediate past, we are moving to eight hours of school per week, in hopes that he will be able to stay regulated for longer periods.

          My son learned nothing good while dysregulated, but has learned far more in four hours per week than he did going for twenty hours per week, which was what we were down to before. The quality of my son’s time at school is vastly more important than the quantity. Also, I really don’t want him to put any more time and energy into unhealthy behaviors, widening those unhealthy brain pathways even further. My son feels terrible about losing his cool and does better when he isn’t being pressed past his limits. That tells me I need to have him in situations where he can be successful until he feels confidence in his ability to cope, then add slowly so that he can expand his ability to cope without being perpetually overwhelmed and feeling like a failure.

  • Ruth

    Totally relate to all you said. We have had some teachers in complete shock and disbelief when our 13yr old daughter was diagnosed. Despite their disbelief really rallied and implemented all the supports that had been recommended by the psychologist. Our daughter is thriving this year and has had many success as a result.
    My son who is 8 has been much more severely affected and has many sensory challenges. Riding the bus has been difficult but manageable until we got an older male bus driver that resorted to yelling and more confrontational strategies to deal with our little guy. The bus driver was not teachable; he felt that kids should just behave……..we now drive him to school.
    Our long term fostering journey has certainly led us to some very unexpected situations along with feelings of huge success and of course the not so glamorous frustrations and failures. We wouldn’t be half the people we are today if it weren’t for living with children with a disability. We thank God for them both.

    • Ruth, thanks so much for your comment. We can certainly identify with what you said- our children have made us better people for sure.

  • Pingback: Your child doesn’t look like they have FASD …. | Our adoption experience()

  • Nora Matthews

    One thing that often comes up in foster care is even the social worker is unaware of a child’s diagnosis or a diagnosis hasn’t been made yet. And because of the immediate trauma of going into foster care, many times it’s hard to really get at what is going on with the child. So you can end up with an alphabet soup of possible diagnoses you’re trying to explain to others as discretely as possible all the while knowing that the child hasn’t had enough stability yet to be sure– is it Asperger’s Syndrome? PTSD? Sensory Integration DIsorder? Reactive Attachment Disorder? ADHD? Even hospitals will give a label that may eventually be changed because they see the child in a very discrete setting. It all makes the foster care experience that much more of a challenge.

  • Amy Westby

    I am learning and willing to keep learning, but I’m still quite ignorant since I don’t have fostering experience yet. Can you help me to understand? How is an FASD child’s defiance or lack of logic different or more extreme than a healthy-developed child’s defiance and lack of logic? When does the heart-issue of sinful choices need to come into the conversation? I’m sure it’s a very grey area topic, and each child is different. And I’m sure just because of an FASD diagnosis does not mean the child receives a “free card” on consequences. How do you navigate this?

  • Colleen Ncrew

    I think I could replace PTSD, Anxiety, Depression, with FASD or any other…what it looks like on the outside is not what it is inside. How often while completely exhausted from parenting, somebody comes up and my angry, mad at me because it is easier to be mad at me rather than somebody else, and says good game….and my child, refuses eye contact, keeps head down, shuffles, moving towards the car. Most people would realize, to them it wasn’t a good game and walk away, believing the parents have this one. Some…try to make a conversation…really? Did body posture not give you the cue…doesn’t want to talk about it. It happens a lot because she almost always has a good game..but the team doesn’t always win. Then when I politely try to head for the car, where they can be safe…they are left wondering. Some days I wish I could wear a shirt that says…if we win…lets talk, if we lose…lets not.

  • Twanya Davenpport

    Thank you Mike, especially for the tips about handling the, “is he normal questions.” My child has some learning challenges, and also struggles with rational thought and expectations. As he matures and as we continue to address them professionally and educationally, his challenges have become less apparent. As you have said, he looks and acts normally. To our family and close friends who knew our child during his infancy and early years, they are adamant that he is a miracle and his condition is in the past. It’s difficult to convey that he still and always will deal with this on some level — because he really is a miracle child. His progress does not match his bleak prognosis. We are grateful, but describing his present challenges takes some time and clinical understanding. Also as a parent, I want others to celebrate his strides, so I have often defaulted by responding yes…he is normal. In addition, when I have attempted to share, many individuals interject by stating that their youth or most youths struggle with similar issues. Thank you for sharing with us how to share with ot