Be quiet. Sit down. What are you doing? Stop. I said no! Don’t be rude. Stop doing that! Sit still! Put it down. That’s enough! No! Don’t bang that. You’ll break it. Put it down. Now! Stop. Immediately! Why are you doing this? Stop! I’m losing my temper! What did you just say? Do you want me to take that away? I said no! Don’t hit! That hurt. Stop it! No you cannot do that. Did you just try to bite me? What are you doing! That’s rude. You’re not allowed to say that. I said no! You can’t do that. That’s enough! Put it down or I will take it away. Stop! It’s going to break! Why did you do that! Ow. You’re out of control! Just get out of here. Leave it alone. I said go upstairs. Leave, now. I said no! Stop hitting! Stop spitting. That’s rude! Don’t do that! I said be quiet! No!
Some scenario like this has played itself out in our house many times a week for the last few years. It used to be worse. Recently it is better. We are not alone. These scenes happen everywhere. All parents will recognize the ineffective pattern. We all do it. But parents of kids with Fetal Alcohol Spectrum Disorders will look at this differently because once kids with FASD are on this spiral, it can lead to a full-on, literally out-of-control meltdown of epic proportions. As the kids get older things get more dangerous and more difficult. Our 11-year old son can already overpower me. These moments are overwhelming, intimidating and extremely hard as a parent to rise above, especially when the other side of that conversation is a tirade of words that might curl a sailor’s toes, back-talking that would make our grandmothers hyperventilate, and physical aggression that can often be aimed just where it hurts, as my husband knows well.
Even before our son’s diagnosis at the age of 10, I frequently said to my husband that I was worried that our son heard too many negatives from us every day – hundreds of mini-corrections and subtle and not so subtle reminders to him that what he was doing/thinking/wanting/attempting/ saying was not right, not okay, not good enough. I was aware, and am still aware, that his experience of us as parents is much, much different than that of our eldest (non-FASD) son – who we could jolly along into good behavior with a look or the occasional warning and very infrequent time out.
All those “no’s” build up over time. They have to hurt a kid’s self-esteem. All those times when a kid looks up and sees only frustration, anger, impatience, disbelief, and fear on the face of his or her parents – all of those times have to sink deep into a kid’s soul. If that is how the person who loves me most sees me, I must be pretty bad. They don’t look like that at my brother. He can’t explain it and he can’t understand it. But I know our youngest feels this. I will bet every kid with FASD has seen that look one someone’s face, probably more times than any of us will admit. That makes my heart ache for these kids. They did nothing wrong. They simply survived in a womb where alcohol crossed the placenta and did the damage that made them unable to handle this moment, this today, this situation. And those kids who are told they are wrong or put down thousands of time a week grow up to be adults that are too often marginalized and misunderstood and still put down.
An extended family member in the US who is a policeman shared a video that shows how few seconds the police have to decide whether or not to shoot when someone they stop reaches for an unidentified object. It deeply disturbed me, as they learned later that the person who was killed in seconds by the 9-10 rounds fired by two police officers was schizophrenic and bipolar and the item in his pocket was a spray attachment for a hose. The way that man stood there, frozen, staring blankly at them as they shouted for him to get down – I have seen that look in my son’s eyes. I recognized that slow motion as he started to take the thing from his pocket, maybe to show them it wasn’t a gun, or maybe he was locked in some fantasy world and not understanding the danger. But the blankness – it made me fear again for my son and reminded me how urgent it is for us as parents to teach our kids when they are small how to start to recognize their need for help, how important it is for us to give them words to say and permission to say them.
But the reality is, it’s hard enough to get a diagnosis, let alone to get help and guidance on how to parent a kid with FASD. None of us wants to yell and to scold. But we know our kids need to function in this world and we know this behavior will not cut it. There are dangers out there for them if they don’t behave in certain ways. And we simply are at our wit’s end.
So, though I am no expert, and we don’t have anything close to a perfect parenting style, in case it might help someone out there, here are a few specific ideas we have learned from people and websites and other parents that have helped us in recent weeks to de-escalate a potentially tense situation. There are many more strategies out there (see here and here for additional resources). These are just a few ideas that are easy to implement.
- React as if your kid is half their age. The first point is to remember kids with FASD are functioning at an emotional and/or developmental age that can be about half of their chronological age. So, looking again at our 11-year old who is currently on all fours on the floor pretending very loudly to be a cat, we remember it can be kind of funny for a five- or six-year old kid to do that. And maybe his insistence on wanting that extra chocolate bunny ear for breakfast isn’t so out of line for a five-year old. We hear that by the time kids with FASD hit their mid-20s this can start to even out. So the way I look at it, we have a critical window of time to deal with, we have to somehow ride out the hormonal wave and the huge unpredictability of the next 14 or 15 years. We need to nurture his self-esteem so that he will withstand the offers to find other ways to feed his insecurities via drugs or alcohol. We need to help him understand himself, and lay the groundwork so one day he can be aware of the kind of support he needs, so he can ask for help when he needs it (or even before he needs it).
- No no-s. Don’t say don’t. Susan Fleisher, the founder of NOFAS UK, told us she eliminated the words “no” and “don’t” from her vocabulary when she was raising her daughter. Finally – a suggestion that is practical, helpful, and relatively easy to implement. And guess what – it works! We have been learning how to use different words – you would not necessarily hear that above conversation in our house any more. Thanks for showing me that chocolate bunny ear. That looks yummy doesn’t it? Is there something else you can eat now that is healthier? Can I help you? You can have that, later…
- Be aware of the brain. We have also taken to heart Diane Malbin’s insights about understanding behavior as a symptom of underlying brain issues. We have learned to be conscious of our son’s need to have more time to process instructions, especially when he is in a loop or fixated on something. We quietly repeat the same instruction, rather than coming out with a full string of additional comments and threats as in the initial scenario. We back away, we give space. We use affirming words. We don’t take this as an insult to our authority or an affront to parental control. We understand that to parent this child means we have to use different strategies, different words. Our older son, family members and friends know this. Adapting our strategies and meeting his needs makes us good parents, not failures, no matter what someone might think if they see us “ignoring” the fact our child just called us extremely rude names.
- Meds? It’s also true that medications can sometimes be a part of the equation when thinking about how the FASD brain works – in both good and bad ways, as we have learned. Our son takes ADHD medications, a dilemma we have written about elsewhere. We are able to speak openly and honestly with his pediatrician about our concerns. We check in with her frequently about this, as things can change. Medication helps our son to focus in ways that he simply cannot at this point when he is not on the medication. But some of the medications fueled some of the worst aggressive behaviors, especially when “rebound effects” were making him incapable of controlling himself when the medication was not in his system. He was literally upside down and in our face. I suspect a lot of people having trouble with their kids might benefit from a new discussion with the doctor about the potential benefits and drawbacks of medication if none are being used or the possible side effects of medications that are being used (and these change over time). Diet and exercise also affect the brain in many ways. Our son was climbing the walls after squirreling away packs of Monster Munch. I knew it had to be related. Reading the fine print, we found MSG as one of the ingredients, we have long tried to avoid MSG for this very reason.
- Positive phrases. Now when he starts to unravel, we try positive phrases. We try to get to some “yes-es”. (And avoid ‘no-s’ as suggested above). We try to re-direct. Instead of the initial conversation above, we now say: I see you are upset. You’re upset, I see that. Are you upset? Can I help you? I want to help you. Can we put this down? Let me help you put that down. Can I give you a foot rub? Would that be nice?
- Create a calm zone. We have made his bottom bunk into a calm zone – with curtains around it. He has music there, and a calming “glow pillow” and a heavy fuzzy blanket. (Any corner of the house could be a calm space, even under a table with a blanket over it or a pup tent.) He is encouraged to go there whenever he is feeling the need. It’s not a punishment. He can go there even if that means he walks away from us when we are trying to get him to do something. It’s a safe zone for him. And when he is there it gives us time to cool off. If he doesn’t go there, sometimes we just literally leave the room for a few minutes to give him a chance to self-regulate, or just sit nearby, silent.
- Give them the words. We adapted an idea from the book Liz Kulp wrote as teenager with FASD. We have an agreed ritual, to help our son get used to asking for help in those moments. We agreed in some calm moments that we would do this game. He is supposed to say “Mummy, I need help.” I say, “I will help you. I love you.” He says, “I love me too.” I say, “You’re a good kid.” He says, “I’m a good kid.” Now, in reality I often have to put my hands firmly on his shoulders, maybe when he is on the floor getting ready to kick me, and say “Do you need help? What do we say?” And I have to ask him repeatedly, using those words. But there has never been one time when that did not work eventually. I encourage you to read Liz Kulp’s books. It was an awesome moment when I showed him some of the handwritten blurbs in the book. See? She is just like you, she knows what you are going through. She wants to help other kids. Isn’t that great?
- Love them. Shower them with your love. Start every day with a cuddle, end every day with a kiss. Tell them you will always be there (and mean it). Tell them you will move the earth for them if you could. Tell them you know they are different, and you love them anyway. Tell them things will get easier. Let them know they can come to you always – tomorrow and tomorrow and the next day and the day after that. Tell them you will help them with their problems, even if they are really big ones. Tell them they will never be alone. Even when you walk them back to the shop they just stole candy from, you will be there. You will help them. Laugh at their jokes, get on the floor and act like a younger kid too. Scratch their back, rub their feet, make bubbles and find anything else that can make them smile. Every day, find some joy. Be their joy. Guide them toward tomorrow. Remember, as one great Facebook post said, “Because of you, there is a human being walking on this earth who doesn’t have to ask for love—it is just given; it is given. Think of the significance of that for a moment.” I love that quote. Don’t we all just sit a little taller as we read that? Why? Because it’s true.
I hate sounding preachy. I am not trying to be. I feel humble and overwhelmed sometimes by the enormity of challenges people with FASD and their families are facing. I know it’s hard. I know in our house we are not having the most difficult experience that FASD can pose. But it’s not exactly easy here. I choose to be positive because the alternative is impossible to imagine. Our son needs us to be stronger than we ever thought we could be. We try. We all try. He tries hardest of all. I think we all have to stop and recognize every day how hard our kids do try to break through those communication barriers, to wrap their brains around things the way society wants them to.
But I will be damned if our son gets shot some day on some street because he didn’t know how to ask for help, didn’t see his way out of a corner, didn’t trust the authority figures around him. I feel urgently that we have to teach him those words now that will help him out of a bad spot. Today, now, in our own home – we have to let him know it’s ok to ask for help – always. What if that guy I saw in the video knew to yell, “I need help!” “Please, slow down so I can think!” “Please give me time to think.” Would he be alive today?
Our son has to learn it’s ok to admit he has a hidden disability, that it is nothing to be ashamed of – that he can say the words, that we can say the words. He can tell people he is struggling, that he has FASD, that he has a brain injury. We have to teach him to trust that people will help him. In my mind, giving him space at home to come to terms with all that he is, that’s possibly the best way to ensure he will have a chance out there. And as parents and carers, yes, it means some days we just have to suck it up, breathe deep, let the words roll off our backs, and look into our child’s eyes with unchanging love even as the world seems to be crashing down.
The Power of Words – PDF for downloading and printing