Fetal alcohol effects
Special needs summer camp
Suggestions at start of session
By Terri Mauro
By Terri Mauro
There are three key factors to keep in mind when considering how best to manage [child]'s sometimes disruptive behavior. Since [child] will have an individual aide, I'm hoping that some of this information can be incorporated into his camp experience without taking attention away from other campers. I think it will help everybody have a better time.
• Fetal alcohol effect: By the very nature of this disorder, [child] is not able to consistently control his impulses, use cause-and-effect thinking, or consider consequences. When he is calm and not stressed, he may be able to do these things with varying degrees of success, but as his stress level increases -- due to the other factors listed below, due to transitions, due to disruptive behavior of other children, due to discomfort with what he is being asked to do, due to rising disapproval of adults -- his ability to control himself will very predictably decrease. If a stress-causing factor is unavoidable, then you MUST expect and be prepared to deal with increased impulsiveness and decreased regard for consequences from [child]. It is not willful disobedience on his part. It is brain wiring.
It's been helpful for us to realize that fetal alcohol exposure damages the Corpus Callosum, which normally connects the left and right sides of the brain and allows instantaneous communication between the two. If that part of the brain is damaged, as it is in people with FAS/E, that communication is slow, faulty, or nonexistent. Rules are stored in the left brain, and any behavior modification that focuses on rules and consequences will only reinforce that left-brain storehouse. Unfortunately, however, impulses come from the right brain. Ordinarily, we are able to have an impulse, instantly check to see if it's alright to follow it, and act accordingly. We can make a split-second decision whether the pleasure is worth the risk. But a person who does not have that ability to communicate between the two sides of the brain can know the rules, desperately want to follow the rules, want to please and avoid negative consequences, and yet still break the rules, because when the impulse comes there is no way to access the information that would stop it. By the time a child like [child] remembers he didn't mean to do something, he's already done it, and people are already angry.
That anger, and branding impulsive behavior as "bad behavior," can start a child on a cycle of low self-esteem, and push them to the point of really not caring one way or another. When you screw up whether you mean to or not, there's not a lot of incentive to want rewards or fear consequences. It must seem to them like what's going to happen is going to happen whether they want it to or not. This, in turn, is thought to be responsible for the high rate of delinquency, drug abuse, criminal activity, and mental-health issues that plague FAS/E victims as they get older. The secret to avoiding these "secondary disabilities" is understanding that the child has brain damage which causes him to be unable to control his behavior, and not blame, shame or punish. What seems to work better is to prepare for better control before the behavior occurs, by changing the circumstances in which the behavior is most likely to occur, and then provide positive consequences for positive outcomes while ignoring negative ones.
• Sensory integration disorder: [Child] receives inadequate stimulation and input from his proprioceptive and vestibular systems. Briefly, the proprioceptive involves the awareness of the body's position in space, and vestibular involves a sense of balance and gravity. In order to increase his inadequate information in these areas, [child] needs to move. This is what all the jumping, stomping, bending, rocking, finger-sucking, head-swinging, crashing, and banging are about. He needs extra-hard input, and he needs it constantly. If he doesn't get it, he cannot remain alert to what is going on around him. With the movement, he is able to pay attention, even if it looks like he isn't (ask him a question and you'll see). This is a child who literally cannot "sit still and pay attention." He may be able to do one or the other, but not both.
Think of it in terms of the way you feel when your foot's asleep. Imagine the worst, most painful, most tingly sleeping foot you've ever had. Now imagine that you have been forbidden to stomp on it or do anything to ease those pins and needles. Could you sit for a prolonged period of time and never slip, never stomp? And if you did, would you be able to concentrate on anything other than the pain in your foot and your overwhelming desire to move it? If the forbidding of foot-stomping continued, would you at some point decide that no punishment and no reward were more important than your overwhelming need to ease the tingling? That, I think, is what it feels like to be [child].
As much as you possibly can, within the context of these two months of camp, I think you will do best to allow [child] his movement. If it distracts the other campers, perhaps he and his aide can move into a position a bit off from the group where it will be less disruptive. At the very least, give him movement breaks every ten or fifteen minutes. And during stressful periods -- such as transitions, crowded places, noisy surroundings -- be particularly expectant, tolerant and facilitating of his need for hard input. Some of that need may be reduced by massages, hand-squeezing, foot-squeezing, palm scratching, pushing against someone's hands, and similar sorts of input.
• Low muscle tone: This also figures in to [child]'s need to move, and the sometimes wild and uncontrolled nature of his movements. Muscle tone involves the ability of the muscles to hold the joints in place. It is not the same as muscle strength; if you've ever struggled to make [child] do something, you'll know that he's plenty strong. But he's very loosely strung, like one of those puppets where you press the button on the bottom and the whole thing goes limp. Because of this looseness, it is hard for him to keep his body upright without momentum. This accounts for his often headlong pace when walking. It also contributes to his need for movement, because it is physically difficult for him to be still. You'll notice that even if he does put forth the effort to be still (and this detracts from his concentration on anything else, as above), he may sway somewhat, and if he has to sit without support, he will usually flop onto the ground. It is a great deal of work for him to be still and upright, and putting forth that effort will adversely affect his levels of concentration and stress.
The low muscle tone also hinders fine motor skills (can't get a tight grip on a pencil or fork) and gross motor skills (can't balance on one foot, which is a part of many, many more complex movements). This and the sensory-integration problems also cause a problem with motor planning -- with poor information coming in to his brain and poor performance of his muscles, it may seem impossibly hard for him to figure out how to sequence a series of movements. Because he can't articulate the problem, he will try to avoid the action, whether by going limp and complaining of fatigue, or trying to talk his way out of it, or misbehaving so as to be removed from the activity. This is another situation where it can help to stop and analyze what he might be trying to accomplish by the behavior, and perhaps stop the activity that is causing him trouble, modify it, or break it into smaller pieces.
None of this means that you have to let [child] run wild, just that things will go easier if you do the thinking when his brain gets stuck on something. We are certainly trying to move [child] to a point where he will be able to do some of this himself, but he is not there yet. Talking through our thought processes -- as in, "I can see by the way you're acting that this is hard for you. Do you want to try this instead?" -- will help in the long run, I think, although he may not always respond appropriately at the time. He needs to know that somebody understands and knows what to do. He tries very hard to cope by himself, but his coping mechanisms are immature, disruptive, and sometimes just make people mad at him. We can offer him other options.
In addition to the ideas above and in the enclosures, here are some specific suggestions:
• If you need to keep [child] from misbehaving before the fact, or break him out of a stuck behavior, some things to try are: distraction (perhaps by talking about cars), humor (saying something silly or acting silly will usually get his attention), or physically taking his hand or touching his shoulder and guiding him where you want him to go.
• The absolute best, nearly always effective positive reward for [child] is letting him play with keys. I realize that there is some concern that keys are not a productive plaything for him, but I do not believe that is so -- and, more importantly, camp is a "whatever works" situation and I am less concerned with breaking what may seem a bad habit than in getting him through these weeks in a positive, nondisruptive way. If the people working with [child] don't want to share their keys, we will send some in; but he will always be more interested in keys that belong to people and have specific vehicles or purposes behind them. Besides being a motivator, keys are also a very calming object for [child] and may help him sit still when necessary. If you refuse to use the keys with [child], you are throwing away the one invariably powerful motivator for a child who will suffer almost any consequence to keep what he sees as control. Please don't.
• Related to the keys, cars are also a useful object of interest and motivation for [child]. If you need him to do something particularly difficult, and will be walking by the parking lot in the next transition, offering to let him look at somebody's car may be a sufficiently motivating reward.
• As much as possible, ignore [child]'s poor coping mechanisms while suggesting better ones. For example, he has a habit of declaring his desire for negative consequences: If you say, "[child], stop that or you'll have to leave the room," he'll say, "I want to leave the room" -- even though it may be clear that he wants no such thing. He can't control his behavior, but he can control the spin. Calling his bluff in these situations does not seem to change the behavior the next time, and can often escalate him into tears and hysteria. I think it will be more helpful to say "I don't think that's true" and offer a better explanation or solution, and a positive consequence.
• Break things into the smallest steps possible, and give positive consequences -- whether a look at some keys, a break from the action, or just a word of praise -- in the shortest time increments possible.
• If the locker-door slamming is a problem again this year, and if there is no way he can be re-routed so he does not pass them, I'd suggest trying this: Before you get to the area with the lockers, do something to distract him -- talk about cars, give him keys to look at, encourage him to join you in a silly walk or a silly noise. Walk with him on the opposite side from the lockers (if I'm recalling correctly that they're only on one side of the hallway) and do what you can to block the sight of them with your body. Walk through the area as quickly as possible. Then, when he's passed them successfully, make a big to-do about it, with praise, maybe a sticker, maybe some keys if you haven't used that to get him through the gauntlet. After using distraction for a while, you might be able to start warning him before you get to the lockers, and reminding him that he'll get a positive consequence for not touching them, and making a big deal about steeling himself to move quickly through and not slam. Eventually, when you get close to the spot, you can say, "What do you need to remember?" and let him supply the information. And then, we hope, eventually he will do it all without prompting, or maybe just lose interest. If he fails at any time, make a big deal of "Oh, no, you forgot!" and point out that he doesn't get the positive consequence. He will say he didn't want it, and you will say that's not true, but it's hard to resist the lockers, and you'll try harder next time. The better you can do in distracting him so that he doesn't have to remember at first, the better this will be.
• [Child] is generally a good-natured guy, so if he has a particularly antagonistic or belligerent reaction to something, that is a clear signal to back up and look at what might be really going on with him. For example: [child] has always been relatively cooperative around the house. So we were surprised when he suddenly started refusing to put on his slippers. It wouldn't happen every time, but when it did, he would scream his refusal. The more we yelled at him to go put on his slippers already, the more he would cry and scream, demanding whatever consequence we offered. It was so uncharacteristic and so over the top that we finally stopped to see what else might be going on. And it turned out that, when he did this, what was really happening was that he couldn't find his slippers. In his mind, inability to find slippers = inability to put them on. It never occurred to him to say, "Hey, folks, I'd love to do what you say, but could you help me find them?" He just rigidly popped into "No Can Do!" mode, and got stuck there. [Child] can't unstick himself, but we can avoid getting stuck ourselves.
• [Child] still has a hard time with eye contact, and it may be that, especially when he's feeling stressed, he's not able to deal with visual and auditory stimuli at the same time. Rather than forcing eye contact, you can usually get good attention by saying, "[Child], listen to me." He may not look, but he will listen.
• "Time outs" are often helpful for [child], especially if explained as "I can see by your behavior that you need to take a break." Given his motor problems, sitting in a chair for time out can be unnecessarily hard; going out into the hall or away from the group in some way will be better. This can be a good way to deal with overstimulation.
• If you'd like to send home a simple behavior chart for [child]'s day -- at school they do one happy, straight or frowning face for the morning and one for the afternoon, with occasional notes about particular trouble spots -- we will try to discuss his behavior with him. Consequences delivered at home are not effective, being so far removed from the actual behavior and antecedent, and discussion is not always productive because [child] usually doesn't know why he does what he does at the time, much less hours later -- but we do like to be aware and will follow through as best we can.
And finally, a metaphor that I hope the younger staff members will not be able to appreciate but the older ones may be. I have recently read of FAS/E behavior as being similar to drunken behavior, and I think that's right on the mark for [child]. Think of how being drunk affects your impulse control -- how it disengages the "rules" brain from the "impulse" brain and allows you to do things you never would sober (that may indeed be part of alcohol's charm for many of us). Think of how it affects your vestibular and proprioceptive senses -- how hard it can become to keep your balance, control your movements, remain upright, walk straight; and how easy it can be to misjudge distances or the amount of force needed. Think of how it impairs your perception of events and your reaction to them; your perception of other people's feelings and your level of concern for that. Think of how much effort it takes to pretend to be unimpaired, and how easy it is to slip into a sort of silly, funny, uncaring-of-consequences mode. Think of how you react if someone criticizes your behavior: Do you analytically say, "Why yes, I can see that alcohol has impaired my abilities somewhat, and I am behaving inappropriately"? Or do you say, "Hey, I meant to do that!"
In our cases, the choice to drink belongs to us, and the consequences are deserved. In [child]'s case, the choice to drink belonged to his birthmother, and he is suffering the consequences undeservedly. We can help him best by understanding that, and being his designated drivers.