People love to give well meaning and unsolicited advice, particularly when it comes to parenting. I’m fairly certain that folks don’t mean to be insulting or annoying when they tell me that my kids are completely normal and that I just need to relax more. Honey, I’d like nothing more than to relax but the consequences of letting down my guard and ignoring history is a sure path to disaster around here. I sometimes wish I could just hand out a pamphlet to the helpful neighbor who watches me hover and tells me to stop worrying so much (don’t you think I’d like to do that?), or the nice lady at the supermarket that laughs because “boys will be boys” and hands them candy. Yes, they will. And no they won’t. My personal favorite is when someone tells me that all they need is a good spanking. Who knew that a good swat would cure brain damage? (And, yes, I’m starting to use that response out loud.)
Kids with FASD are just different. You know, because of all that prenatal brain damage. Someday, when I’m not bristling with anxiety about what’s coming when we get home or how to stay a few steps ahead with these guys, I’d love to sit down and share some of those differences with those well meaning folks. Now I can just direct them to this article. And so can you.
1. THEY DON’T GET REWARDS OR CONSEQUENCES
They like rewards, don’t get me wrong. No one wants a sticker more than my boys. They also have no idea how to get one. Even if you spell it out over and over again. Sticker chart? What’s that? You can’t take all the stickers and stick them all over yourself? Why not? And what do you have to do to get a sticker? No idea. When I raised my regular kids, we started sticker charts when they were learning to stay potty train. After 5 days of no accidents (and a sticker every day) they got to pick out a bigger prize. My boys have meltdowns just trying to understand the rules. Because they don’t understand the rules at all. They want the sticker, they want the prize. By the time they finally grasp the concept of how to earn a reward it’s long over. Like my 4 year old who was given a mini-marshmallow every time he pooped in the potty. We weaned off of that eventually and he poops fine now. But when he sees the marshmallows he tells me he’s going to go poop so he can have one. Or you can just have them in your hot chocolate kid. No poop required.
Likewise with consequences. I can’t seem to help them connect a consequence, natural, logical or otherwise, to what they’ve done wrong. So the hitting and biting and screaming continue. The most I seem able to do is to remove them from the situation for a few moments to breathe. They like breathing but I don’t think they know why they’re doing it. And Aiden’s food issues…ugh. Normally if you spit on food, say you don’t like it, aren’t going to eat, I would remove your meal and you’d be excused. This causes a huge meltdown. At every single meal. I’m stumped. He eats mostly peanut butter and jam sandwiches these days.
2. THEY DON’T GET CAUSE AND EFFECT
This is similar to the above but bears mentioning because if you don’t get that A causes B, and B causes problems, you’re going to continue to do A and be confused about how B happened. Little ones quickly learn that if you touch a hot stove, you’ll get hurt. FASD kids, not so much. I still have to caution the boys every time I open the oven door about the heat and the potential for getting burned. And for this reason, lamps get broke every few weeks around here (jumping on sofas) and kids fall off of said sofas and are always surprised when this happens. Because they don’t get the concept of sitting still and staying safe and keeping lamps in tact. I swear Aiden fell off of his chair at every meal for a year. He was surprised and distraught every single time. He sits on a big bench now instead and only falls off occasionally. #winning
3. THEY CAN’T HANDLE MORE THAN ONE THING PER DAY
I learned that the hard way and I still struggle with it. Liam, in particular, goes crazy if we try to do more than one outing. Like the time in Florida when I took them to the pier, then to lunch, and tried to stop at the Winn-Dixie to grab supper. Liam acted like he was on speed by the time we hit the grocery store. This was about 10 days into our 3 week trip and he never really recovered from that episode. The combination of the trip, the water, and all of the fun we were having seemed to make his brain just explode. He was manic and silly and completely over the top for weeks. He made no sense at all, laughed in my face when I talked to him, and couldn’t sit still. Which meant he got injured constantly because he was physically out of control. Next time we go on vacation, because I’m not giving up the dream, we’ll stick to one thing every few days. Think of the money I’ll save. I have this crazy dream of taking them to Disney someday but I’m little afraid for Liam.
That’s Liam at Easter after falling face first into a brick fireplace.
Aiden handles the stress of too much fun in a different way. He becomes cranky, whiny, clumsy and goes to sleep for long hours. In Florida he slept 15-16 hours every night. Bless him.
4. THEY DON’T DO CHANGE WELL
Similar to above, they don’t do change. Even when they’re really excited about it. They love the concept of going somewhere new. They love birthday parties. They love Christmas and Easter and the supermarket. They can’t cope with any of these things at all. Or maybe they cope for awhile but the crap hits the fan when they get home. For three days. Or more.
5. YOU CAN’T PREPARE THEM FOR CHANGE
They perseverate. A lot. That’s a fancy social work word for getting fixated on things. Like the time I was talking too much and told the boys that I was thinking about taking them back down to Florida. Unfortunately, I hadn’t thought that through. Because I was only starting to look for a rental and we aren’t really going for like 8 more months. They have asked me every single day, ten times a day when we’re going to the beach. Tomorrow? After lunch? Like when they went yesterday (9 months ago)? I finally said we weren’t going after all and changed the subject. I’ll probably tell them the day before or when they notice the suitcases are out. If they notice.
One time Liam caught me trying to throw out some old Christmas decorations. He got totally fixated on the jingly bows and insisted on having one on his head. Since we weren’t going out, I only said “no” 5 or 6 times before letting him have it. Because nothing says fun in the sun like Christmas bells in your hair.
6. THEY HAVE A DIFFERENT VERSION OF REALITY
This one is scary for foster parents who have case workers who don’t get that concept. Which is about 95% of them. No offence social workers, I didn’t get it either. The fancy word is confabulation. Some would say it’s lying. I think it’s more like their version of the story becomes their truth because they don’t know the difference between truth and reality. Once they tell a story, they accept it as gospel.
My favorite example of this is the elevator story. When Liam was almost 3 we spent 10 days at a beach condo in Florida. The condo was only on the 4th floor but with all of our crap, the elevator was a necessity. Liam was terrified of the elevator. (#countryboy) He would just freeze up. So one day we get to the ground floor, Aiden charges out and Liam is frozen clutching his pail and shovel and afraid to step over the crack. By the time I grabbed Aiden, the door had closed and Liam was still on the elevator. I’m frantically hyperventilating and punching buttons and watched as he traveled to the third floor and back to the ground in less than 15 seconds.
After I slugged back an alcoholic beverage (#irony) at the pool bar, all was well and it was forgotten. Until the day he started his new preschool 15 months later when he suddenly remembered how he got lost on the elevator for the entire day and had no family. And he proceeded to spend two days telling everyone who would listen the story of how he lived on an elevator all by himself. I kept telling him that’s not what happened and then I snapped and said we weren’t talking about this anymore. He also likes to tell people I hit him. I did hit him once with my purse by accident. His version is Bible. Stand down social workers until you hear the real story.
7. THEY DON’T REMEMBER THINGS
Sometimes this works out in our favor like when the boys went trick or treating this year, gathered a ton of candy, and then forgot all about it. They never mentioned their candy buckets again once they woke up the next morning.
They’re still sitting in the garage (half full because my memory is fine). This was great but it’s going to be a problem as they get older. Despite the fact that we had the same thing for breakfast for over a year, they still seem surprised and have no idea what’s coming each morning. One will consistently ask for a sandwich despite me telling him sandwiches are for lunch. Rules are particularly hard for kids with FASD because they don’t of that whole rewards and consequences thing. This is frustrating for them and the adults in their lives. Teachers really struggle with this and often think these kids are defiant or being difficult. They really just don’t remember.
8. THEY FEEL THINGS DIFFERENTLY
Kids with FASD often have sensory issues either feeling too much or too little. My youngest, Aiden, had an actual diagnosis of Sensory Processing Disorder long before the FASD diagnosis. Everything was too much for him for a long time. He hated noise, bright lights, and tickling was almost painful. Doctor’s visits are completely overwhelming because of the poking and touching and all the activity going on. Some kids don’t feel pain, or have other reduced senses and need extra pressure like firm touch and weighted blankets to connect with their senses or to help them self-soothe. Weighted teddy bears and stuffed toys are a good idea, too. I’ve actually considered learning to make these since there aren’t a lot of resources in this area.
9. THEY HAVE WEIRD PHYSICAL THINGS GOING ON
Every time a new thing happens like Liam’s seizures, or their chronic constipation, extreme clumsiness, intolerance to sugar or food dyes, or urinary tract issues you’re going to ask the doctor if this is connected to FASD. The doctor will tell you it’s not. Bless his heart. Other foster and adoptive parents will tell you stories of the exact same symptoms. Which kind of leads me to think that the physical stuff is probably connected to the FASD.
I probably should stop asking the doctors questions like that (our doctor is great, it’s the emergency room doctors I’m referring to here) because when I look back at my 18 years in child welfare, and the past 6 of them working with infants and toddlers in care, every single one of them that were exposed to alcohol in utero had similar physical issues going on that my guys do. It wasn’t until we were referred to a urologist for Aiden that I made the connection. I recognized the doctor’s name and remembered that I’d taken two other kids on my caseload to see him who also had the same issue he was experiencing. Coincidence? I doubt it. Other parents and caregivers are your go to when the doctors tell you you’re crazy. They’re the experts because they’re living it. Doctors don’t mean to dismiss us, they just don’t really have the same experiences. Or they do and they haven’t made the connection. A doctor familiar with FASD is hard to find but worth connecting with if possible.
10. THEIR VOCABULARY DOESN’T MATCH THEIR COMPREHENSION
Basically they talk the talk but can’t walk the walk. For Liam, who loves to memorize and quote movie lines, that means he says intelligent sounding things that make no sense at all. Sometimes you get tricked because it might be coincidentally in context with what’s going on but the two are rarely connected. Like this morning, after a new snowfall, when the boys asked if I like snow. The kids know I hate it but they ask every time they see it. Liam then says, “Come on, Mom. Try it. Don’t be Scared. Maybe you’ll even like it.” Ummmm….What? I’m 47, I’ve experienced snow……Oh. And then I realized he was quoting a movie line. He had read the script but it wasn’t the correct script. So even when they can repeat a rule and the consequences for what happens if they break it, they don’t really understand what they’re saying. I struggle with that one. A lot.
There you go, well meaning folks at the grocery store…that’s what we’d like to tell you if you take the time to listen.
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