How to stay sane and survive Fetal Alcohol Spectrum Disorder!!!

Caregiving for people with Fetal Alcohol can straight up piss you off – even with all your knowledge about the disability, it’s still hard to sometimes keep your cool. As a caregiver, I think the hardest part and the one that used to push me over the edge, were the INSULTS and bad language they used when they were in a bad mood – especially when it was directed at me. Even though they may not understand the meanings of the words they say, they still say them. It hurts your feelings and makes you super mad. How can it not? You’re only human. Having said that, sometimes keeping your cool, while they are having a verbal meltdown or they are unable to cope with their day, can mean the difference between a good day or a very bad day. Here are some strategies that I have learned and shared with other folk’s I am coaching that has brought success.

Think Like a Pro Athlete
I went to a basketball game and was lucky enough to have some great seats near the court. As I watched these massive human beings (who made me feel like a hobbit) play the game, I couldn’t help but notice the amount and intensity of insults these players were getting, not only from the fans but from the other players as well. I couldn’t believe how they could just stand there and take all that verbal abuse and not FREAK OUT!!!!
I began to look into it further and found that most pro athletes are able to just shut out the noise and focus on their job. I know what you’re thinking – ‘Jeff that’s fine…they are pro athletes and I am just a caregiver. They have a game to focus on’. Well, if that’s where you’re going with this, you’re mistaken. You have a job to focus on as well. When you’re in the middle of a meltdown you have to figure out what caused the meltdown and how do you fix the problem so the meltdown does not continue or escalate. From what we know about kids with Fetal Alcohol is that meltdowns occur when these kids are overwhelmed. Take for example what’s happening to me right now as I write this. My guy(one of the young men I work with) is calling me every name in the book and telling me how he is going to take me out, etc, etc. Now, I have two options: 1. I can freak out and fire verbal remarks back, which would just turn this day to pure chaos OR 2. While my guy is blowing off steam with his colorful language I can try and figure out why he is so upset. In this case, he wanted to take a break from cleaning his room and go out. Which of course I have no problem with, knowing his level of functioning. As we are about to leave he puts sandals on – really? I tell him that wearing sandals is not a good idea because it’s SNOWING outside. Well, this was not the answer he was looking for. You can see his whole face change in a second (my guy kinda reminds me of an Adam Sandler Character who can change from being super nice to a crazy rage in seconds). Here is what the issue was: his emotional cup was full from trying to clean his room AND the other day he mentioned that his shoes stink (which is true, he never wears socks so it can get a little cheesy). So, I let my guy calm down and when he was ready I explained to him that we are going to get some shoe deodorizer so his shoes won’t smell anymore and I took him out for ice cream. The point is if I wasn’t able to focus when he started to get upset I couldn’t think about a proper intervention for this particular situation. So, like the pro athletes, this is ‘our game’ as caregivers. It’s important to try your best to NOT take things personally. I know – easier said that done, but YOU CAN DO IT.

FOCUS ON THIS PICTURE

I am sure most of you have seen this picture already, it’s a very popular image used in trainings and seminars. I have had this picture in my wallet as a reminder of what I was dealing with when I would feel the vain in my head start to throb. The key is to get a moment by yourself and take a look at the picture. Seriously. It helps keep me in check, it brings me back to realize just how damaged people with FASD really are and maybe what I am asking my guy to do is a little beyond his ability at that moment. Or if I start to get annoyed from hearing the same story over and over again I take a look, it has helped me keep my cool in certain situations, over and over again.

Look, no matter what people tell you, caregiving for someone with Fetal Alcohol Spectrum Disorder can be one of the toughest jobs in the world; it can also be one of the most rewarding. I am not saying that they always make you want to drive your car off a bridge – these are just some helpful tips that may help you when you are feeling like you are heading towards the bridge. A lot of people are not prepared or had no idea what they where signing up for when they started living, caring or working with someone with FASD. Without these tools, kids with FASD go through multiple placements such as moving from aunts to uncles to grandma’s back to aunts, foster families – you get the idea. If we can fine tune the way we deal with them and understand that when they are having a meltdown it is due to their inability to understand what’s being asked of them, we have a better chance of making sure they are safe and successful. The quicker we abstain from our anger – the quicker they will abstain from theirs.

Call to Action:
I want you to leave a comment and tell me and the other caregivers what you do when you are angry and feel overwhelmed. What has helped you keep your cool? I know you guys have some fantastic strategies that will help other caregivers!!!

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16 comments

  1. You’re members of the Sandals and Hygiene Clubs too, huh? 😉

    You’re dead on with the “maintain a professional stance” response to meltdowns. Awesome post. If our kids sense that we might be out of control based on our response to their “behaviour” (communication), they have no one to depend on to help them feel safe when they’ve lost their own sense of boundaries/feeling ok in that moment, which escalates their own insecurities. It’s definitely been a journey learning how to deal over the years!

    At our house, we also take a break from whatever situation is causing angst. Presently, little dude takes all of his breaks outside doing something physical (inside=destructive, not doing something physical outside=escalation outside) and I take the time to employ whatever self-care I need, whether that’s texting a friend to say “tell me something funny” or a quick vent with an attempt to employ humour, taking the pause to focus on the trees out my window, having tea, running up and down the stairs, art, music, etc. For me, it’s not about anger while he’s speaking disrespectfully, it’s about how my body feels when he is in the “not sure what’s going to happen next” mode. Dude has been learning management tools “by rote” for a number of years, and that it’s not ok to be inappropriate even though you’re feeling angry/ frustrated/pissed off/etc. In the past week, we are now experiencing about a one-minute cool-down/turn-around. That rocks. Once cool-down is achieved, we move on to address the issue that brought on the meltdown mode in the first place.

  2. This is good timing as I had this problem last weekend, and sadly, the meltdowns in my home tend to be the ones that I have. I lose my cool more than he does. It happens after the multiple “little things” which I handle and take care of one-by-one, but I eventually wear down and then comes that last straw, which is usually something else minor.

    As an adult, he’s finally learned a lot better self-control, even more that he realizes. He used to be violent, and would hurt people but in over 10 years of knowing him, he hasn’t lost control of himself so much that he he’s hurt anyone. I think his self control is so good now because he finally comprehends the damage he’s capable of, so he is able to keep a tight reign on it, where he couldn’t before.

    My “losing it” comes mainly, I think, from being too isolated and not having my own “circle of support”. The best I get is from the online community and it is helping. I do best when I can remember that he doesn’t do these things purposely and that he’s trying his best. Other than that, my best coping mechanism is to walk away for a “time out” and come back when I’ve calmed down.

  3. absolute meltdown of child/young adult—-my response humor, humor, humor—
    child/young adult space tell ready to talk — my space, keep the humor deep breath if necessary— child/young adult approaches to talk begins to talk blames me, melt down— space space— my response calm with humor as I ride the rollercoaster of her rage and uusally misperception— child/young adult try sitting and talking again (repeat cycle if necessary)—-Work out and resolve situation again–Together hugs and kiss reminders of always loving her but not liking behavior— talk with other parents raising FASD keep humor, laugh enjoy a cup of coffee Knowing at sometime again I will strap myself in for another ride of a lifetime laugh…………

  4. Hi Jeff –
    Loved the article… as usual. Everything you say makes sense and I find myself nodding at almost everything you are saying, but I still find implementing the strategies difficult or coming up with and thinking about new strategies sometimes leaves me feeling stuck. I mean, I know why the girls I work with act the way they do but sometimes I have a hard time being a detective and really finding out what is wrong. So, my question for you is, how can I figure out what is really up with the girls? How can I be a better detective?
    Any suggestions would be helpful.
    Thanks so much for everything.
    Keep this info coming – what a great support!
    Cheers,
    Martee

  5. I find it helpful (I know in the heat of the moment it is difficult) to remember that anger/agression almost always is brought about by other emotions. Be that fear, uncertainty, or just misconception. If you can figure out what that emotion is then you can usually defuse enough to distract………..When all is said and done you must find humor!

  6. I try to step out of my “parent hat” and put on my “detective hat” because it helps me step out of an emotionally charged situation and try to problem solve what is the underlying issue. Then, I can help address the frustration that the child is inappropriately expressing. It helps to de-personalize the attack and get to the real problem underneath.

  7. Totally needed to hear this today. Yesterday I fell in to the trap of taking other people’s opinions & forgetting what I have learned to be the reality. Most days I can keep my frustration level at bay, but when other people are around & hear her words… makes it harder to take, feel like I need to do something about it, make it stop… just gets worse if I do. Lesson learned. Again.

  8. I find that humor helps. We laugh A LOT!!! I usually send my 9 year old to his room to cool down and I just laugh. I don’t take it personally, I really never have. I remember the funny things he does….like call me Bob. Where that came from who knows, or the funny faces he makes. Now the tantrums are few and far between and when they start we usually end up laughing at each other. Yes, I get mad, but whats the point really? The madder I get, the worse he gets. I don’t care what people think, they don’t walk in my shoes and I have told many people to stay out of it or mind your own business. I don’t care, they don’t come home with me, but my little guy does. I have to worry about his feelings, not theirs. We have our days, and he just has to stay in his room or out of my way until we both can handle it. But, we RARELY get out of control anymore. We used to have them constantly, but now that I have let it go, so does he!!!! Good luck!

  9. April (June 13, 2012),
    Your words are exactly what I needed to hear today. Just as my son was spinning the cat around on the floor by it’s tail. I sent him to his room so that I can calm down. Not caring about what other people think is so very important. I truly hope that someday we can reach the point where we rarley get out of control. Thanks for you insight.

  10. Hi Jeff
    I am the adopted daughter who is eighteen and going on twelve, but she is a great person and thinks she knows everything. She is fasd severe and we have known from the time she was born and we met her a 3 days old that ssh was fasd.She was a foster child with us until she was five and the our older children told us to adopt her and they would help and they have. the older brother is 48 and the older sister who id also adopted is 43 so we do get a lot of help from them. My husband and I are both 72 yrs. old and I think our life would be so boring with out her. We have no grandchildren so she gets all the attention.
    I am from Kingston and am a member of the FASD action group and I used to help run a Learning and sharing group at community living until the lady I helped facilitate with became ill and we had to stop the group, but we are still trying to find a way to start it again.
    I read your article and everything you said is absolutly true but is very hard for peoplr to understand how these people think and work. I also find that when my daughter is haveing a melt down or using bad language at me I just walk away and ignore her and she soon comes around and most time will say she is sorry. But I have had a lot of practice at this, and at one time she would just run away and we would have to have the police and dogs to find her.
    Thanks for all your compassion for these people.

  11. I got some helpful info this week from an adult who has FASD. She was telling me that the conflict/escalation is a real rush for the victims of FASD. Even if you are frustrated and crying, their entire world is about control and this shows they have control and are happy inside. It sounds mean but when they can wind you up, the feel a little rush of euphoria. She told my daughter to tell me her “switch is broken” and then she recommended sending her to room to count fast to 100 and then count very slowly to 100. She said that the second round of counting will end at around 15 and the situation can be diffused. We have been working with this strategy and for now, it’s working:)

  12. I have been the custodial stepmother of a child with FASDs for nearly 2 yrs now. I am the one that noticed there was something wrong, I am the one who has all the training, I am the one who stood up in court and explained why my stepson was better off with my husband and me (while 38 wks pregnant) than his biological mother, I am his caregiver. I am his mother. Knowing everything that I know, having gone through all the training that I have, there are times I just send him to his room and tell him to just stay there until mommy isn’t mad anymore. Just recently, my 6 yr old step son punched my 15 mo old son in the stomach causing him to fall over and hit his head on the hardwood floor and my toddler then proceeded to lose consciousness within 20 min. He did this because he wanted my toddler’s toy and my toddler wouldn’t hand it over. I couldn’t look at my stepson. I sent him to his room and called my husband to come home from work after I called 911. I have come to realize when there is nothing left for a caregiver to do to stay calm, the best thing to do it is just chill out. Send them to their room, a safe play area, whatever it takes to know that 1) They are safe and 2) You can take a timeout for yourself. All the knowledge and training in the world cannot prepare you for something like FASDs. All the patience, experience, knowledge, and training in the world cannot prepare you for a child with FASDs, ODD, and PTSD.

  13. Would like to find out, how can I reach my 36 who has FAS, she’s married with 3 children, 19,10,8,. Situation is she hates me, I’m her Mother she started acting different when we moved to another state. First we were still communicating, then she started acting strangely. Soon after I received a statement from a student loan stating an loan was taken out for $5.000 . I never did that, I saw her husband had done this, was told to go to the district Attorney, I didn’t want to damage our relationship any further. I did speak with her, I just got silence then she stated that she didn’t want to hear from me again. Her husband is controlling, and she loves him, don’t see anything wrong with this situation. I’ve been back to hometown, haven’t heard or seem her and my grandchildren, only my oldest grandson. I think of her, a d my other grandchildren. Surely, the husband is happy with the situation for his actions will be addressed. Not sure best way to approach this situation, so we can heal and move forward. I was tempted to go to her home, but fear shell call the police, I don’t want the drama. I would appreciate any advice, best way to handle this matter.. My grandson did say she’s sad, cries a lot, she’s not dealing with her siblings either. We were a close family, Thank you.

  14. I have been living with my own constant meltdown for several days now. I am the one unable to get myself back in control. I have had extremely little training in/with FASD since my nephew (I’m his guardian) was diagnosed 3 years ago at age 4, shortly after I gained guardianship. Unfortunately I get constant conflicting “do this…don’t do that” then back to the beginning again from his mental healthcare providers. It really wears a person down.

    I entirely relate to the comments from everyone, especially that he seems happiest when he is able to push me into a full meltdown. He will smirk and cluck every time he is able to get me to that point. I know to take a time out when I’m about to lose it but I don’t always remember to do it. It definitely makes things worse when I don’t. He seems to remember to walk away better than I do. He has had a lot more therapy and training than I have. I have, basically, no support system to lean on. Nobody understands the effects of FASD so I waste my breath even venting. I do my best each day and try to do better the next day.


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