Below is a transcript of an online chat in the Spring of 2002 between Dr. Martin Maldonado and graduate students in Ann Murray's distance education course on Infant Behavior and Development offered at Kansas State University.

AM: I might ask a question to get the ball rolling. Although many babies collectively have sleeping, feeding, and crying problems, how often do you see children who fit the diagnosis of regulatory disorders? What is the rate in the general population?

Dr. Maldonado: I wish we knew the answer to the last question. I have not seen any studies addressing that question. We know in the infant mental health clinic there are about 60% of babies who have regulatory disorders, this was also a figure found by a group in Pisa [Italy] as well as ours at Menninger. We suspect that the problem is rather frequent, affecting perhaps 5 to 10% of babies? Including milder forms

MC: is it usually drug related?

Dr. Maldonado: I would not say that. Mothers who use drugs during the pregnancy do have frequently babies who have these sorts of problems, but they can occur in the "best families"

Dr. Maldonado: the rate of psychopathology in children in general is about 20% for all disorders, regarding infancy ones. The rate for infants should be about 15 to 20% for " all disorders"

AM: Are there cross-cultural differences in the incidence of these disorders? If so, why do you think that is?

Dr. Maldonado: Of course there are differences transculturally. In Mexico, for instance, excessive crying associated with regulatory disorders

Dr. Maldonado: that disorder would be diagnosed as " susto" rather than regulatory disorder. There are different cultural explanations for the problems

CM: susto?

Dr. Maldonado: susto is a spanish word for "fright" a " culture bound syndrome", in which the parents think the baby has been frightened and this is why he or she cries a lot

Dr. Maldonado: several clinicians have the impression that sleeping disorders are less frequent in cultures where parents sleep with their babies most of the time

RH: Would you recommend co-sleeping with an infant during the first few months of life and does this actually reduce SIDS?

Dr. Maldonado: SIDS is less frequent in infants who sleep with their parents. The Australian academy of pediatrics now recommends to sleep together or at least to have the baby sleep with the parents in the same room

CM: I wonder if the co-sleeping infants entrain their breathing with the parents'.

MC: Do regulatory disorders last for life then or do they fade out as the child gets older?

Dr. Maldonado: regarding the issue of fading out, I do not think there is much scientific information. A study carried out by De Gangi and Greenspan suggested they do not fade out, the children tend to become hyperactive, restless, inattentive or have "ADHD"[attention deficit hyperactivity disorder] as we call it nowadays

Dr. Maldonado: the baby who sleeps with the parent wakes up more frequently, this is thought to be protective against SIDS [sudden infant death syndrome], except in the case where the mother smokes

JG: Is there a particular age that is recommended when the child and parents would no longer co-sleep?

Dr. Maldonado: this is a cultural-bound idea, when to stop. In Japan traditionally parents sleep with their teenagers on the futon, all in the same room, this is changing now of course

Dr. Maldonado: in western cultures parents tend to not have their baby in bed around 3 or 4 years of age

CM: are regulatory disorders more prevalent than they used to be?

Dr. Maldonado: regarding whether they are more frequent, we do not know really, as there are no studies.

CM: or are they just diagnosed more?

Dr. Maldonado: many clinicians feel that these disorders are more frequent now because children who spend a lot of time with multiple caregivers do not have a chance to "settle down" and engage in prolonged one to one interactions, focus, concentrate etc. but are always in large groups

Dr. Maldonado: regulatory disorders are only diagnosed by infant psychiatrists and psychologists, there are very few, so it is not diagnosed very frequently by physicians or pediatricians

MC: so are they considering day care a factor then?

Dr. Maldonado: this is just a speculation... as I mentioned, they can occur in the best families, where the mother is at home, etc. There is undoubtedly a genetic factor as well

Dr. Maldonado: we frequently see babies with regulatory problems where the father or mothers are also inattentive, too sensitive, dysregulated, etc

Dr. Maldonado: however, growing up, if one is vulnerable, in environments that are bewildering, noisy, where there is a lot going on, and where one cannot engage in quiet one to one interactions, probably contributes to the dysregulation

CM: either at home or in care

Dr. Maldonado: yes, at home or in care. Sadly, many, many ... day cares are just quite overstimulating, the caregivers are mostly making sure the children stay alive and do not hit each other

AM: A mother contacted me recently and described a baby who perhaps fits the diagnosis of regulatory disorder -- the baby had been colicky and now was six months old and still crying and fussy almost all of the time. The mother was well educated (a nurse) and this was her third child. Her pediatrician says there is nothing wrong. I checked and there were no members of the World Association for Infant Mental Health and no state association. Who could she go to for help? Would an occupational therapist be a good choice?

Dr. Maldonado: an occupational therapist - one versed in sensory integration training or theory- would be a good alternative for the baby

Dr. Maldonado: it is sad that the pediatrician just says there is "nothing wrong", because this makes the parents feel not understood or sometimes even guilty of complaining of something does not exist I mean

RH: Does the number of siblings an infant has in the home affect their regulatory disorder?

CM: I had to be separated from my siblings because their noise upset me

Dr. Maldonado: indirectly yes, the number of siblings I mean. This is another "anecdotal" response rather than one based on science. Some infants require a lot of attention, if you have many other siblings, then this cannot be given to the very needy " high investment" child

CM: siblings may be overstimulating as well.

AM: Is there any link to birth order? Are firstborns more or less likely to have a regulatory disorder?

Dr. Maldonado: There is no information about this topic. This is a good question. In some studies this could be easily found, I have not seen that being addressed in any of the literature

CM: all these studies waiting to be done!

Dr. Maldonado: I would like to add that most pediatricians do not have any training on child emotional problems or very little on development, nothing on infancy

CM: that is unfortunate

AM: even the mental health professionals that we have locally may know very little about infancy.

Dr. Maldonado: it is important to know that the pediatrician usually gives advice but does not have training. They usually go on what their parents did, or what they have read on their own, usually very behaviorally oriented, like " ignoring crying" or "ignoring tantrums" or giving time outs

MC: when did scientist start researching regulatory disorders?

Dr. Maldonado: I would say about 20 years ago, Jan Ayers published the first book. I do not know if she could be called a scientist, as she published her material based on clinical experience, it makes a lot of sense but it is not " scientific"

Dr. Maldonado: there are other studies, Georgia de Gangi and Winnie Dunn, at KU have done the most studies on these topics

AM: Jan Ayers is an occupational therapist, isn't she?

Dr. Maldonado: Mechthilde Papousek in Munich has several studies on the topic, as well as the group in Pisa and our small group at Menninger

RH: How can regulatory disorders affect an infant's play skills? (Motor problems?)

Dr. Maldonado: regulatory disorders tend to interfere with the child's ability to be content.

Dr. Maldonado: sometimes the sensitivities and tendency to become overwhelmed interfere a lot with the ability to engage in two-way interactions pleasurably. Many children just avoid playing and prefer to do " their own thing" and play by themselves more, because this is easier than play with another person

RH: Therefore, lack of social engagement.

Dr. Maldonado: also the child tends to be very unaware of the other person's nuances, needs, intentions, and this makes the play somewhat one sided and difficult

CM: sounds like autism -- is there a relationship?

Dr. Maldonado: this issue of the relationship to disorders of relating and communicating (autism) is interesting. Nobody knows what or if there is any relationship

CM: I wonder if one could be mistaken for the other

Dr. Maldonado: there is certainly a continuum... The child may be just very independent, do their own thing...etc. On one side of the spectrum and on the other (autism) the child is simply unable to interact really with the other.

Dr. Maldonado: most autistic children have severe regulatory problems (eating, sleeping, crying, motor skill problems, numerous sensitivities, etc. etc.). Sometimes the "differential diagnosis" is very difficult

Dr. Maldonado: at preschool age sometimes clinicians disagree on the diagnosis. ... We see this often in the preschool years. One clinician says the child has " pervasive developmental disorder" while another would more say. The child has language difficulties and regulatory disturbance

CM: the idea of continuum is probably most accurate

Dr. Maldonado: we should not forget that children with regulatory problems are also unique individuals and also have strengths. The issue of strengths is crucial in dealing with parents... the strengths of the child are important to design a treatment strategy and also to help parents see the positive side of things

RH: Do you teach parents ways to help their child with their regulatory problems at home?

Dr. Maldonado: often these children are very persistent, insist on certain things, they are not boring, often very intelligent and they do things their own way.... I like to say that these children are not as boring as most of us

CM: ha ha

AM: that puts a positive spin on it.

Dr. Maldonado: regarding the question of " home", we like to think of ecologically sound interventions. By ecologically sound I mean to look at their environment. This gives clues of where things might be changed. For instance in many families there is a lot of noise in the house, too much light, the wrong kind of light (fluorescent), etc. Most parents are willing to make changes in order to help the child

Dr. Maldonado: We worked with a little boy from Thailand. His parents were well to do and literally doted on the child. They bought a lot of toys, mobiles, etc. The room was decorated with numerous toys, posters, etc. etc. not only the room but the house. The infant happened to be very hypersensitive to stimulation, so the whole house was too overstimulating. When they changed this, the child started to be more content and responsive

RH: That's good intervention.

AM: Martin, it seems like that most of the new toys are over stimulating. I had a hard time even finding a rattle for a newborn that did not bark or light up when touched.

Dr. Maldonado: AM's point is very good one. This is sad. We have a hard time findings toy just made of wood that " do not do anything' but one can manipulate. Children prefer this if given a chance

Dr. Maldonado: we have to get the toys from other countries to use in the clinic, or get them from " country' stores

CM: I agree - I had a hard time at Christmas finding toys that a child could use his/her imagination with.

AM: Unfortunately, children are becoming used to toys that responded in some way -- and they may be bored with the old-fashioned kind.

Dr. Maldonado: the old toys require people to manage them, like puppets, or wooden toys, they require interactions. More and more we are resorting to robots like " Furby" etc.

JG: everything that you are saying describes perfectly a 3-year-old in my classroom with sensory integration issues. But there are moments when I think that the child is gifted because he is able to figure things out very well, like a difficult puzzle.

CM: he may be, JG

JG: but would you say that the ECSE classroom is the best environment for that child? I have 12 students, 8 special needs children. This boy requires a great deal of one-on-one because he does like to do his own thing.

Dr. Maldonado: maybe a " Montessori" classroom would be more appropriate for children with severe regulatory difficulties. In the Montessori model, the child doesn't have to adapt to " circle time", to "plasticine time", etc. etc. but the leader is supposed to follow the child's interest

CM: unfortunately "Montessori" doesn't mean anything -- any program can call themselves Montessori. The name is not trademarked

Dr. Maldonado: the " real Montessori" is quite strict in their approach to the toys, and the training of the teachers, etc. I guess in the US there are not that many really "Montessori" schools, certainly in the Midwest

CM: unfortunately, that's true

AM: my experience was that the child could select the toys in the Montessori program, but what they could do with the toys was totally prescribed.

AL: I observed in a program that said that they were based on Montessori, but she told me that it wasn't totally Montessori

AM: there was no emphasis in this Montessori program on social interaction or cooperative pretend play between the children.

Dr. Maldonado: I think the main idea would be to respect as much as possible the child's interests and not to try to impose one's order into their interests. This is where children who are very persistent, dominant, more "dysregulated" get into trouble, like in transition times or going along with someone

CM: or do they need more structure, rather than less?

Dr. Maldonado: I think Montessori did not like pretend play very much. I suppose that it is fair to say that she has some very weak points. I think she did not like fairy tales nor things that were not real, she did not like fantasy.... I disagree with that rigidity

Dr. Maldonado: the issue of structure is a very important one. I think the structure is very important. The structure would be that there are people reliably there, that there are mealtimes, that there are some rules, things you cannot do, etc. but not to the point of dictating the content of every activity

CM: and some of these kids seem to especially need to be physically redirected rather than just talking to them from across the room -- in a childcare setting I mean

Dr. Maldonado: these children are very difficult to take care of. We frequently see that the child trains the mother to be very careful, very cautious, etc. often an aunt, a grandmother or even the husband who see this blame the mother for the problem and think it is her fault. The public tends to see the interactions, like the mother does not discipline immediately. She has been trained by the infant to not respond to everything because the child tends to fall apart. The result of the child's sensitivities and problems is often seen as "the cause" of it, namely the mother who is very careful with the child, who has to break slowly news to the child, say no very carefully, or who lets the child "get away' with things, because it would be counterproductive to reprimand the child on everything they do wrong

JG: One positive that I have going for me in working with this child, is that the parents are very on top of the issue and we have a great communication system between home and school. I did receive another para just to help with this child in the classroom.

AL: We have a child that used to fall apart at just about everything - he is getting better at understanding what we are asking him to do, though.

AM: JG, is the child receiving sensory integration therapy from an occupational therapist?

JG: yes, but only once a week for 20 minutes. She has provided us with some interventions, but he is already "bored" with some of those things.

Dr. Maldonado: I would like to add something about that issue

CM: I'm glad you got the para - that's what I was going to suggest.

Dr. Maldonado: often the therapist does not train the parents. I think it is crucial that the OT train the parents and give them activities or games to practice at home. Often the schools do not do this, (the same happens with language therapists)-- the therapy is too infrequent and too brief to have a lasting impact

JG: This child was receiving services from infant/toddler before coming to me. So the parents have worked with the OT for activities, etc.

Dr. Maldonado: many parents would be eager to do more things at home along the same lines, but if they do not ask specifically, the therapist doesn't initiate to train them and given them ideas of what to do at home

TF: I agree, it is important to provide the family with various techniques that can be used in situations that the child has been observed having difficulty.

Dr. Maldonado: I would like to add that these are not ' diseases" in the true sense of the word, they are more disturbances or perhaps disorders. We know very little about their causation, their clinical course and their manifestations. One should not give the impression to parents that the child is " sick" or has a " condition" very early on. it is best to say 'the child is very sensitive, it is hard for the child to focus, it is hard for him or her to tolerate certain stimulation etc.' and then suggest interventions. I think it is important not to " medicalize" this condition as if it were a disease, like diabetes, etc.

AM: is the idea to try to get them to gradually tolerate more stimulation without falling apart?

Dr. Maldonado: yes, the child should be optimally " pushed" to a certain degree to tolerate or accept more new things, new stimuli, etc. But also respected and helped to cope with the challenges that we are putting in front of him. There a number of calming and soothing techniques that might help with that

Dr. Maldonado: what I mean by pushing, is that one might try to set up small challenges to tackle new things, a bit longer attention span, a new motor activity, not a major insurmountable challenge but small gradated ones and encourage the child to try new things

TF: One of the families that I work with shared some tendencies of traits seen in their child that she explained that her brother and herself used to do as children. Is there a family tie with regulatory situations?

Dr. Maldonado: one should not just be a spectator and let the child dictate everything (for instance stay isolated playing by himself in a corner), but to " mess " with the child in a fashion that is mostly pleasurable, playful but at the same time helpful

Dr. Maldonado: yes, often two or three siblings have some challenges, in some families we see, two or three siblings end up having attention deficit, to b motorically clumsy, or to have learning disabilities eventually

JG: The boy in my class - his mother said that the father had ADHD. And that's what we do in the classroom. In [university] report to the school, they told us to not allow this child to totally get out of doing activities that were required of other children in the class.

Dr. Maldonado: I think JG's point is a good one... the challenge is how do you do it without "forcing" the child or becoming punitive. The trick we try to teach is to "woo" or "seduce the child" in to doing things, making them interesting, fun and engaging so unwittingly the child is engaged in the activities they tended to avoid

JG: An example that I could use. Yesterday during storytime, this boy sat on my lap and helped turn the pages. This was a new strategy for me because usually he doesn't sit for storytime.

Dr. Maldonado: the story time story is a very good example of what one could do ...

Dr. Maldonado: also, let us not forget that regulatory problems also include the child who is 'too placid" and just "sits there". Parents and clinicians tend to worry more about the disruptive child but what about the child who is too passive?

CM: the ol' squeaky wheel syndrome

Dr. Maldonado: we recently saw a little girl who had not been diagnosed ever. She is 8 years old. She cries everyday in school. The mother thought she was perhaps depressed. The problem was that the child had a very slow processing mechanism. One asked her a question, like did you like that? She would take about a minute before answering anything, then she might say " yes". In every interaction she reacted so slowly, she also was slow to move and had very little stamina. Children tend to read these problems as a lack of interest in interactions and they just tended to avoid her or ignore her. Therefore the feeling of being rejected

AM: was she cognitively normal?

Dr. Maldonado: yes, she is very intelligent, except that she also has an expressive language disorder, it is hard for her to find words. If one says, what was the movie about? She says, ... it was good (after a long latency). Her sentences are very short, and she says very little about things. It is hard for her to organize a response. One can see why children just give up trying to be her friend

AM: what can be done to speed up her responses?

Dr. Maldonado: yes, she is indeed very intelligent. Adults can wait for her responses ... but the pace of the interactions with other children is too fast for her, she cannot " keep up" so she is sort of rejected

Dr. Maldonado: this is the big question how can one speed her up. We are going to try to give her psycho-stimulant medication or perhaps if that does not work something like Prozac.

AL: When you gave the first descriptions, I thought of diabetes because of the low stamina-my cousin has diabetes-she's 3

CM: is that the only option?

Dr. Maldonado: also a program of exercises, practicing dialogues, teaching her to hurry up a little bit,

CM: perhaps the other children can also be taught to slow down a bit for her

Dr. Maldonado: and also language therapy might help. Our OT hopes that vestibular stimulation might help to activate her brain a little bit

Dr. Maldonado: it is hard in the public school to teach other children to slow down. One can do that with a close friend, like inviting the friend to the home, one can also do this with siblings and relatives, but it is hard in the school

AM: do you try all of these approaches all at once, or one at a time to isolate what works?

Dr. Maldonado: in practice we try everything that might help at once. For instance the girl will have language therapy and OT at the same time. In the meantime we will help the parents to set up games where she has to find words, say what is going on in the picture, converse at the dinner table, without her noticing that this is " therapy"

Dr. Maldonado: this is all done in a pleasurable way.... In the clinical world we are not very scientific, we just do everything that might help

AM: I think it is time to let you go. This has been very helpful!!

CM: thank you very much!

JG: Yes, I really gained a great deal of information from this chat session. Thanks!

AM: thank you very much for your time and for being in the hot seat for a whole hour!!

AL: thank you!

Dr. Maldonado: bye
 

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