Paperback: £16.95 / $24.95
add to cart
2000, 234mm x 156mm / 9.25in x 6in, 304pp
ISBN: 978-1-85302-914-1, BIC 2: JMC
VFJD
VFXC
Explanation...
When the original version of this book was distributed over the Internet, we received some harsh criticism about the dismal way our special person's life was depicted, and about the tendency of the mother to 'hit' her child on the back whenever she wanted him to do something. Also, both parents in our book seemed to be unstable 'rage-aholics', ranting and screaming at their special-needs child for the tiniest infractions of the household rules. We were asked by a number of people to state that the evil mother is a fictional character, or better yet, to change the whole tone of the book.
We are not suggesting that this is how we or other real parents behave, but that often this is how a special-needs child perceives the adults around him. A special-needs child, remember, is generally denied a normal childhood, and goes from one therapist to another, where he is poked and prodded and forced to do things normal kids aren't even aware of. In my experience with experts and therapists and certainly with adult bystanders, few adults take a special- needs child's feelings of distress seriously, nor do they even attempt to get into the child's world or to listen to the child's claims that something hurts when it wouldn't hurt a normal kid.
This book was written to give those kids a voice, to help you get into their heads, to give you a new understanding that a light tap on the back can be experienced as a hard whack by an overly sensitive child, and that a slightly raised voice can seem unbearably loud to a child with sound sensitivities.
We purposely exaggerated reality to make a point, therefore, but some of the scenarios are so outlandish that we hope you will find them funny. James and I actually had a great time coming up with the predicaments faced by our poor SP, and though we want the reader to learn from them, we hope you regard them more as satire than actual fact. In reality, I sometimes place my hand on James's back in a protective, supportive fashion when I know he is terrified. This protective gesture turned into a 'hit on the back' in our discussions, as a way of demonstrating how terror overstimulates James's nervous system to such a degree that he cannot tolerate any physical contact with anyone, not even the gentlest touch.
I still admit that the imperfect, impatient mother is in me, and part of our book's purpose was to present Mom in other than glowing, heroic terms. Mom is only human, and we believe those selfless moms who sit on the floor with their special child for 12 hours a day 7 days a week are as fictitious as the mother in our story, who is constantly on the phone complaining about her child.
Reality lies somewhere in between, and though our book is not intended to be taken as literal reality, we hope that you will come away with a better appreciation of the complexity of your child's world, and most importantly, the depth of his feelings. In almost all other books, it is adults who speak for the children. In our book, the child speaks for himself.
He deserves to be heard.
Thank you
Joan
Abbreviations
My mom and I are sometimes lazy, and we didn't want to write the same thing over and over again, so you'll see some abbreviations in this book. This is what they stand for:
NP = normal person
SP = special person (anyone who suffers from a developmental disability, an autistic-spectrum disorder, a sensory disorder, or who has special neurological needs that average people do not have)
NPs = more than one normal person
SPs = more than one special person
NK = normal kid
SK = special kid
NKs = normal kids
SKs = special kids
NFs = normal feet
NB = normal baby
SB = special baby
NBs = more than one normal baby
SBs = more than one special baby
Saying Hello
Problem
When one normal person comes up to another normal person and says 'Hello,' the first NP expects the second NP to make eye contact, smile, feel good that someone is talking to him, then say hello back.
But a special person can't do all that. When an NP comes up to an SP and says 'Hello,' the SP freezes, looks down out of sheer terror, feels fear in his entire body, and forgets how to talk. He just wishes the NP would go away.
Usually, the NP will repeat himself. 'Hello,' he'll say, more loudly this time. But the special person has forgotten how to speak. Sometimes the SP's mother will hit him on the back and command, 'Say Hello.' The special person, out of fear, may echo 'Hello' quickly but then become frozen again. Often, though, the mother's message gets scrambled, and the SP may hear, 'Say yellow' or 'Sail low,' or something that makes no sense.
A very thoughtless NP may shout 'HELLO!' a third time, which hurts the special person's ears (see Chapter 2: Noise Sensitivity). Now the SP might shout 'Hello' back, out of fear that the other person will say a fourth hello even louder. Other times, the person who said 'Hello' gives up and goes away.
Solution
The special person needs to practice saying hello over and over with a mom or a sister or a nice aunt. He needs to videotape himself saying hello, so it becomes a familiar situation, and he can do it without having to think. It might help if you let him watch excerpts from movies in which people are greeting each other appropriately, though you run the risk of having him fixate on a particular scene and then repeating it endlessly. (See Chapter 24: Having an Urge to Quote.) You might want to write up short skits in which people are saying hello in various ways, then have the SP try out all the parts. After he has practiced hello in this formal fashion, you may want to start saying hello to him at random during the day, so he gets used to a spontaneous need to respond. Your familiar voice is not the same as a stranger's coming out of the blue, but if you throw out a dozen hellos every day, eventually the terror of having to greet someone may lessen.
One of the main problems with mastering the art of saying hello is that, down deep, the SP doesn't really understand why he has to say hello. After all, what does that weird word mean? It doesn't convey any information other than to say 'I'm here,' but to the SP's way of reasoning, it is obvious that he is here because you can see him. After all, most SPs use their eyes, not their ears, to take in environmental information (see Chapter 23: Auditory Processing Delays), so an auditory signal that someone is present seems irrelevant in the face of a visual one. And even if the SP isn't terrified by having to interact with a new person and deal with a change in his life (see Chapter 9: Change), he wants simply to launch into his topic of interest without a useless preamble that only wastes time (see Chapter 29: Being Obsessed with Time).
In short, there isn't any good reason for saying hello, and that may trouble your SP. You may have to concede that this is one more of those silly NP requirements that every NP follows and no NP questions. You can throw up your hands, laugh, and say, 'Well, you know how it is with NPs. They need at least two different reminders for every one thing that happens.' Try not to use the 'Stupid NP' defense too often, but with something as irrational as saying hello, you may have no better explanation.
Knowing How Far Away to Stand from Other People
Note: This is also a type of space problem, but since it is a crucial skill in social interaction, we gave this topic its own chapter.
Problem 1
When one NP walks up to another NP, both of them know how near to stand beside each other, in order to be heard and respected, but not too close so they can smell each other's body odors. They also stand the right amount of distance away so that they can nod to each other and even pat each other a few appropriate times during their conversation. All this makes NPs feel closer and warmer toward each other.
When an NP walks up to an SP, the SP feels as if he is about to be attacked and therefore he stands back. If the SP walks up to an NP, however, the SP does not get proper signals from his sensory systems, and thus often bumps into the NP or stands too close. As you know, the SP is constantly being assaulted by the NP world, so he does not learn how to behave in a non-assaulting way. He does not know how far away to stand so other people don't smell his breath, because he can sometimes smell someone else's odors across the room. And he can't figure out how far away to stand so his voice isn't too loud, because everyone's voice is too loud for him. But most of all, the SP does not want to stand next to anyone ever, at any time. He wants everyone to go away. Therefore, he does not practice appropriate distances when he is forced into a social encounter.
Solution 1
This is a tough one! There are some rules that the SP has to learn by rote, without understanding what's going on. Have him practice walking up to family members and stopping at a specific spot (close enough so that he can reach his arm straight out and touch the person, but not close enough so he can touch the person with a bent arm). Have him start observing other people's reactions to him, though this skill may be impossible for him to master until he is an adolescent. Keep encouraging him to at least try. If an NP starts shifting his body closer to the SP, then the SP is probably standing too far away. But SPs, if the NP does get close, don't suddenly feel as if you are about to be eaten in one gulp. He is merely practicing his NP manners, which say that it is polite to stand within easy hearing distance of another person. Remember that hearing is a very important sense for NPs. Don't expect NPs to understand all the terror that is rampaging through your body when he gets close to you. He won't understand, but you won't get eaten either.
Problem 2
[By James, age 8]: When an NP is at a gymnastics class, sometimes the NT (normal teacher) of the gymnastics class will tell the students to pick a place a certain distance apart. The NP knows that distance, and the NT will not yell at him because he knew the distance already.
When an SP is at a gymnastics class, and the NT tells the students to pick a place a certain distance apart, since he learns things slowly and he is delayed on many things, he does not know what distance he should pick. Sometimes the NT has to take 15 minutes trying to tell him where he must stand, at the proper distance, and the class gets delayed. The class is without parents, so the mother can't hit him on the back, but the NT may hit him on the back and say, 'You should know where to stand! Now the whole class is delayed because of you!'
The NT will then talk to the mother after the gymnastics class about what a pill the SP is.
Solution 2
Put pieces of tape on the floor at home, and practice standing the appropriate distance from people. Remember that you may have some tantrums if you change the distance, but do it anyway, so the SP will get used to a variety of appropriate distances.
Having an Urge to Quote
Problem
As mentioned in the last chapter, when a normal person sees a movie, he says, 'What a nice movie,' then walks out of the theater and resumes his life. If someone asks him what the movie was about, he retells it briefly in his own words.
When an SP sees a movie, although he may not process very much of what he's heard, his mind might memorize it immediately like a tape recorder. This is the third major principle of understanding an SP: he may have a deficient ability to process auditory information but a superior ability to memorize it. We believe that an SP's mind is compelled to memorize something he hears so that he can process it later on and in little pieces. Not all SP minds do this; some SPs don't memorize or process anything until hearing it repeatedly.
When the memorizing type of SP leaves a theater, the movie he just heard keeps playing over and over in his head, and he cannot think about anything else. After a while, hearing some line ten thousand times gives the SP the urge to quote. Often, the line is something that his NP mother cannot stand. For example, 'That's a spicey meat-a-ball,' from The Mask. Eventually his mother will hit him on the back and say, 'Stop quoting!' or even 'Shut up! That's echolalia.' That will make the SP sad, because he cannot help it.
Solution
SPs, one way to get a quote out of your mind is to write it down in a special book, called the 'oubliette.' An 'oubliette' (from the French oublier, meaning 'to forget') is a place where you put something, in order to forget it. We use a special diary, and when my mom can no longer stand a certain line that my mind has fixated on, we write it down in the diary, then that helps me to get it out of my mind. Sometimes I tell her I'm not ready to give up a certain line yet. Then we don't put it in the diary.
Or take a drama class, particularly one where you read scripts and memorize lines. There your 'photographic memory' will be valued. You can think about becoming an actor, because they have to repeat their lines over and over and over again. The NP goes crazy with all the repetition, but the SP finds it comforting and safe, since it is not new.
