By Jeff Noble
You start to get that feeling in your stomach. It’s almost time for your loved one living with FASD to get up and start their day. The uneasiness you’re feeling is probably because you’re not sure what kind of mood they are going to be in when the day starts. You say to yourself, ‘please be in a good mood’. Have you started your day like this? Well I sure have.
‘Good morning’ you say, trying to be as nice as possible and at the same time trying to read their body language. And, then I get one of these – ‘This place sucks . . . don’t talk to me’. If this is the reply you get or something similar, then you’re not alone. Here are some of the reasons why I believe they start their day on the wrong foot and here are some suggestions for treatment on what you can do to get through the day and on track. Remember: It’s cope – not cure
Here’s something to think about, when trying to figure out FASD.
Picture a light bulb in a shed or a basement and it has a short in the wire. Sometimes when you turn the switch on, the light burns bright with no issues and it cooperates. The next time you turn it on it works but it flickers. It will work, then cut out, work, then cut out – which annoys the heck out of you. And then sometimes when you go to turn the light on, it DOESN’T WORK AT ALL!!! So, like the light bulb, you just have to work with what you got. If you are able to make the appropriate adjustments to accommodate their disability and where they are at that day – you will both have a better day.
WHY IS MY KID SUCH A GRUMP?
Lack of Sleep
Sometimes these kids have trouble falling asleep and when they do, they have trouble waking up. Often, people living with FASD need a lot more sleep than the rest of us. Their brain is always working overtime, trying to process yesterday’s information. Look at it this way – have you ever been to another country where you don’t speak the language? You’re trying to read the signs and figure out what they’re saying, however, at the end of the day you’re tired – exhausted, even. Some people call it jet lag, but it’s because you have been trying to process information you didn’t understand and that makes us tired. Same goes for these folks. So, what do you do to help them with this? Let them sleep for as long as possible when you can. I know you have places to go and people to see, but if they are able to get a little extra sleep that will help both you and them in the long run. Something I do to help them wake up is to play their favourite music (even if it’s not your favourite). It’s also a great Idea to make sure you use the same queues and prompts when you do attempt to wake them up. What I love best about working with people with Fetal Alcohol is trying to figure out what works best for them, some like it super quite in the morning so I don’t say anything and with some I am super positive and very excited. People with Fetal Alcohol tend to take on the attitudes and emotions of the people around them, so if I am excited and positive they tend to have the same start to their day. I’ve also been known to dance and make fool of myself from time to time(ok more often than not)
Since this is a disability that affects information processing, a negative event or comment they heard a few days ago is now just registering and they’re upset about it. I remember sometimes one of my guys would wake up in a super foul mood and I hadn’t a clue why. The day before was great and maybe there was even something to look forward to that day. After waiting until he was ready to talk about it, he would tell me about something he was upset about that happened a few days ago to him. That allowed me to change my approach and to be more empathetic. I must stress that waiting until they’re ready to talk and not asking too many questions is important. If you ask too many questions when they’re not in a good mood, it might cause them to become more overwhelmed and make the situation worse. (I know this from lived experience. Yikes.) I had another young man that would show acting out behaviours when he felt guilty about something he did. We worked on identifying the emotion of guilt, then normalized it by telling him everyone feels that way sometime and I’d try to figure out a way to make him feel less guilty.
They Don’t Know What to do When They Get Out of Bed
The morning can be really tough for someone living with this disability. Everyone has a morning routine that they do without thinking. The problem is one of the primary characteristics in a lot of people with FASD is horrible memory, which hinders them from remembering what to do when they first get out of bed. This can cause them to get upset or anxious. Make sure to have a routine that they can follow every morning with the use of visuals and reminders. This will help them form habits which replace the need to think about what’s coming next. Make sure you give them lots of support when learning the routine you can’t just put up visuals and expect them to follow it.
In order to become a powerful caregiver it is really important to recognize when there not having such a good day and be able to have strategies and a plan in place – no matter what stage the light bulb is in that day. I know a lot of what I may say is easier said than done having said that if you stick with it you’ll have more good days then bad, which the ultimate goal when it comes to fetal alcohol syndrome treatment.
Call to Action
What do you as caregivers do to turn around a bad day? Are there specific actions you take in the morning with your loved one to better the odds of having a great day? Please comment so others may learn from your victories.