Sunday, January 25, 2015

Inside That Special Needs Village: the educators

I have broken down the professionals in your child's village into three groups: doctors, therapists, educators. This post will concentrate on the educators.

To begin read the CDC's comprehensive website on development disabilities HERE.

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There are any number of classroom configurations for your child. Go HERE for a past discussion. Inclusion; self-contained(resource room, out-of-district); homeschooled

Special education teacher  1) Defined; 2) Defined

Regular education teacher (includes professors in post-secondary education)  Defined: remember that a general education teacher is not specifically taught how to handle special education issues. that is why those interested in becoming special education teachers go for an advanced teaching degree. In college it is important to remember as well, that the professors so not provide special education services. The college only provides accommodations so the student can access the education. Considering the boys' multiple issues it was why our "special needs village" decided it was best for all considered to place a para/educational consultant with the boys in their college and graduate school classes.


Special education director (both k-12 and college/graduate school. In post secondary education this person will help decide what is the best accommodations your child will need in college and graduate school. To this extent if there is a problem in college or graduate school you may also have to work with the Dean of Students as well.) Defined


Para professional  Defined; it is important to remember that each school district has their own requirements for para professionals. It is best if these individuals are college graduates with an interest in education. It is also important that these people, who generally have no background in special education, be trained properly by the special education teacher or administrator in the school. They must be taught how to handle your child, what behavior interventions are important as well as appropriate, in addition  to helping your child with their educational issues. They are not babysitters. (When I hired the para/educational consultant for the boys in college I put an add in the listsev of the school of education in order to find an appropriate person.)

Educational consultant  Defined; in our situation the para is now being called an educational consultant. You will find at different levels of education that certain titles will change. They afterall are terms of art, but at the same time important to connote what type of service is being provided. At the college level, what our educational consultant does is to provide support for the professor. Many of the boys' professors were quite reticent about teaching a person on the autism spectrum. Not because they didn't want to educate them, but they had never been trained how to manage the information for persons with disabilities. That is when the consultant steps in and offers his guiding hand. Lets them know that he is there for that reason and he will guide her if the need arises. At no point, have we ever experienced anything but relief on the part of the professors when given this extra support.

Tutors  a modern technological reality is that if you cannot find a tutor nearby that can work with your child, find one that can tutor using Skype/Facetime. We found a calculus tutor for CM2 who I would email the homework and he would then set up his whiteboard on Skye. He would then do the problems with CM2 right then and there on video chat. It was on-line education at its best.

Religious instructor and/or Youth Group leader (yes this is important for inclusion)

Sports coaches There are any number of recreational groups that are geared towards those with special needs (this is not about Special Olympics). If your child would like to play little league, town soccer, etc it is important that you find out who the coach will be and if they are amendable to having a special needs child on the team. While group activities are good for social skills, it may actually be better to give them private lessons or find smaller groups. It will also depend upon the number of adults present and the support services if available.

After-school activities teachers, in and out of district (anything that your child enjoys doing that will add to their overall happiness and well-being, such as a piano or guitar teacher). This is simple enough. If the program is school based and your child has one-to-one support, they should get that support for these activities as well. If it is private then you seek out understanding people. We were always able to find those who were happy to work with the boys no matter the activity, except when it came to the town chess class. Grand masters may be able to play chess at a high level, but their ability to deal with special needs children is none existent. The people that ran the program were no better. Again do your research. In truth the town should have provided support since it was a community based program and inclusion is mandated through the ADA, but it really wasn't that important at the time and I didn't have the patience to sue or fight with the town either. 

Now, on the other hand, one of the better programs we requested be developed through the town was the inclusion program for the town based summer camp. Since the boys received ESY, we asked the school district to provide support for the town camp program. While there were summer programs for special needs, none of them were appropriate for our children. Hence, the school district, inconjunction with the town, created a joint camp-inclusion program for our children. Today there were upwards of 40 children enrolled in the program. The boys got to go to town camp with the children they went to school with and the school district got to show the school board and the taxpayers how they were able to save money, but still provide a quality special education. The boys enjoyed their summers very much. It ended up being for the nursery school camp through the middle school traveling camp. Something I call a win-win.

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Again if you would like to share another type of educator that you have found helpful you can add them in the comments. But remember, I will not post "educators" that have practices outside FDA, AMA, NEA, or recognized national organization approval. While you may have found them helpful, I feel it would be irresponsible on my part to include questionable practices.


Inside That Special Needs village: the therapists

I have broken down the professionals in your child's village into three groups: doctors, therapists, educators. This post will concentrate on the therapists.

To begin read the CDC's comprehensive website on development disabilities HERE

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Psychologist (can be school personnel not only private; can include private talk therapy, CBT, social skills, circle of friends, etc) Psychiatrist is a medical doctor who did their residency and fellowships in psychiatry.  Psychologists are generally therapy oriented PhDs. Here is an article on the differences.
To understand what a psychologist does read this article in the American Psychological Association website In many, if not most, situations you will end up using both psychiatrists and psychologists. The psychiatrist is the one who prescribes medication. The psychiatrist should work in conjunction with the psychologist to keep abreast of how well therapy is going. This is essential to understand if there needs to be a tweak in the medication.

If your child does not need medication, and not every person with a developmental disability does require medication(s), there will generally be no need to see a psychiatrist. However, do note that it is recommended that for proper clinical treatment medication should NOT be prescribed without the recipient also seeking therapy. It is a joint program. Check out NAMI (National Alliance on Mental Illness) for a discussion on treatments and services for those with mental health concerns.


Social worker (can be school personnel not only private) Defined HERE. Read: how do social workers help the families of  children with disabilities? Remember too that social workers can be found in hospitals, rehab or long-term care facilities, are also court-appointed, and employed by government agencies created for the disabled.

There are a variety of organizations nationwide that promote school-based social workers. This would be a good place to start if you are trying to decide between having your child work with the school social worker or school psychologist:  
School Social Work Association of America;
National Association of Social Workers;
American Council for School Social Work 

Guidance Counselor (usually middle school and high school. Also becomes adviser in college and graduate school. Some middle and high schools have Vice Principals that specialize in special education. This may also be your go-to person if your child is having issues either behavioral or educationally.) Read: Role of the School Guidance Counselor

A major role of a guidance counselor can also be to facilitate circle of friends or group counseling on any number of issues. It greatly depends on how your school system has set up their counseling system as to whether your child will have a guidance counselor group support system or the school social worker will be the one leading the sessions. A question you would want to ask is how much experience anyone particular person leading the group has with your child's type of disability or behavioral issue. That too should be a deciding factor as to who to go to for counseling. Discussion of Circle of Friends as applied in the UK

Behaviorist (this is the person who takes your child out into society and teaches them how to be independent out in the world at large; life skills) The educational background of this therapist can be anything from psychologist, special educator, or social worker. The important point is that they know how to help integrate your child into the world and teach them the skills necessary for independent living and selfawareness. So your psychologist, social worker or even a special education teacher/para can do double duty.

Job Coach  is supported employment of someone with development disabilities. In fact typical people can use a job coach as well. The same purposes apply

 "A job coach is an individual who helps people with career development, professional goals and long-term workplace success strategies."
 
Read an indepth discussion from the UK HERE 
Read: US Department of Labor Disability Employment by Topics  
Watch The Art of Job Coaching.

Practicality: Entering the Adult World
Practicality: Job Interview Skills

Nutritionist and/or Dietician (many of our children either have allergies, celiac disease, specific diets due to any number of issues etc, it is important to have someone with knowledge of  how food works into our daily lives. Doctors are not given the education to do this effectively. And making certain that our children get the right amount of nutrition, while taking care of their food needs, is essential to healthy growth.) Difference between a nutritionist and a dietician.  In the end it is important that you hire someone with real experience with the issues your child faces.

I personally would NOT hire someone that thinks that with the proper nutrition your child's ASD or ADD will be cured or greatly ameliorated. Truth is the reason that your child acts better when they receive the right nutrition is most likely because they are no longer in pain and alot of discomfort. Whomever you hire also needs to be realistic and deal with your child as they are. It is about your child, and your family afterall. They cannot be of one mind to the point that they are inflexible. Example: CM2 enjoys peanut butter and jelly sandwiches every morning for breakfast with a glass of chocolate milk. It makes him happy. The nutritionist at the endocrine doctor's office worked around that, as did the private nutritionist we used that taught us about organic and whole foods.

As a lesson in who not to hire: I had gone to a nutritionist looking for a menopause diet. Instead she simply gave me the diet she gave all women in their 50s and then proceeded to yell at me when I questioned why she was forbidding certain foods. I had not asked for a diet to loose weight, but that is what she gave me. It was practically the exact same diet she gave an associate of mine. Also, when asked about an upcoming birthday party and what were the rules about dessert, she actually admonished me not to have 3 pieces of cake, but only 1 small one. As if for some unknown reason I sat all day long at home and ate entire chocolate cakes on my own. There was a huge modicum of disrespect in her approach towards me. Of course she annoyed me right away when she told me since her best friend had a special needs child she knew all about what it takes to raise one. It is important that you feel comfortable with the nutritionist you hire just as you need to feel comfortable with every doctor or therapist you employ as well. I fired her after one visit.

The following are the more well-known types of therapists. Your school will test your child in these areas and will provide services if needed. Now remember there has to be a particular deficit (defined legally) in order for your child to warrant school intervention. If the school does not provide therapy though, it does not mean your child would not benefit from outside help and support. Also even if the school provides therapy there are a variety of combinations: consult; push-in; pull-out.

Occupational therapist  Defined

Physical therapist  Defined

Speech therapist  Defined

Pull-out service is when your child is taken out of class to be provided services. It can be one-on-one or in a group or both. Your child does generally miss some class in order to receive this service.

Push-in service is when the provider comes into the class and tries to facilitate social/speech interaction or figure out support systems that would enable your child to function better within the classroom. This may also be done in conjunction with a pull-out service.

Consult service is when the therapist may not actually interact with your child, but discusses with he teacher/para alone how to help your child. You can also see this service type when dealing with special education services. In an interesting occurrence, CM2 received consult OT services in 3rd grade. Now because CM2 had a mild form of dysgraphia the OT consult offered to do writing calisthenics with the entire class. This is writing exercises done to music. It is alot of fun and all the children really enjoyed the program. So in the end, his entire 3rd grade class reaped the benefit of CM2's OT consult.

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Again if you would like to share another therapist practice that you have visited and found helpful you can add them in the comments. But remember, I will not post "therapies" that have practices outside FDA, AMA, or recognized national organization approval. While you may have found them helpful, I feel it would be irresponsible on my part to include questionable practices.


 

Inside that Special Needs Village: the doctors

I have broken down the professionals in your child's village into three groups: doctors, therapists, educators. This post will concentrate on the doctors.

To begin read the CDC's comprehensive website on development disabilities HERE.

*****

Psychiatrist: is a medical doctor who did their residency and fellowships in psychiatry.  Psychologists are generally therapy oriented PhDs. Here is an article on the differences. I have placed psychologists among the therapists. It is also important that the psychiatrist have a background in developmental issues. It has been shown that psychiatric drugs can and do react differently in the autistic brain, and a psychiatrist should be aware of these studies. Psychiatrists also specialize in pediatric, adolescent and adult psychology.

Pediatrician: a medical doctor who specializes in children's issues. (Yes, I know you knew that.)   

Here is a list of pediatric specialties. 
Developmental pediatrician is a subspecialty.
Read: Developmental Pediatrics and Autism: The Basics 
Click HERE for a slideshow describing a developmental-behaviorist pediatric practice.

Endocrine doctor: Defined HERE.
Remember that your child will need a pediatric endocrinologist if they have thyroid, growth or hormonal issues. As they enter adulthood if the endocrine issues remain then they should switch to a regular endocrine doctor. I include this doctor separately in the list separately simply because for some reason endocrine issues do effect those on the autism spectrum in a higher percentage than the rest of the population of children.


Neurologist: Defined HERE. 
Confused as to whether your child should see a neurologist or a psychiatrist? Read this article from Discover magazine as a place to start. Still confused? In the end it's a matter of  preference. It is important to remember though that if you decide to go to a neurologist just for a seizure disorder (as opposed to for all the neurological issues) that they also have an understanding of your child's developmental issues as well. Not all do. It has been shown that approximately 30% of those with autism spectrum disorders also live with seizure disorders so this is no small issue.

To make it all the more confusing both the National Institute of Neurological Disorders as well as the National Institute for Mental Heath list autism as a medical condition that they both treat.


Internist (when your child outgrows the pediatrician it is essential that their main doctor understand that they have special needs and they will need to deal with them a little differently than with other patients). This is rather self-explanatory. This doctor is simply the one you may use as long as they are attuned to your child's special needs when it comes to care. Most general practitioners will garner information from specialists in order to proactively treat your now adult child.

Important legal healthcare note: Once your child reaches 18 years of age, they are legally adults. You will need to get them to sign a healthcare proxy (a copy should be given to their doctors). Additionally,  most doctors will ask for a list of persons that a patient will allow them to talk to about their health issues. Make sure that your child lists both parents and/or adults who have been instrumental in their healthcare. In the alternative, if you need to seek a conservatorship or guardian status for your adult child those papers must be given to the doctor.

Also if your adult child is admitted into a hospital for any reason you need to show them the healthcare proxy/guardianship papers, and/or have the child sign papers that the doctors can talk to you. [Also remember that once they are adults you cannot, unless under certain extreme situations (which tend to involve lawyers), have them committed for psychiatric support without their permission.] If healthcare papers are not signed, it is quite possible that the doctors will make decisions about your adult child's care without your input or permission, even if your child is not capable of making decision on their own at that time. (This may seem highly illogical to those of us raising autistic children, especially since we know that on a maturity level our offspring do mature later in life, but you are dealing with the law and it is geared toward the most typical in society, so be prepared.)

It is also important to remember, that the laws governing the dissemination of private medical information included all typical offspring as well. So it would behoove parents to have their typical children sign healthcare proxies and healthcare directives. Also note that if your adult child (typical and autistic) goes to college, they must sign the FERPA form whereby the school will talk to you not only about their grade, but their health as well. If your over 18-year-old child has any issues, be it behavioral, legal or medical, without that signed FERPA form, the school will not notify you nor discuss any issues with you.

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Again if you would like to share another doctor-practice that you have visited and found helpful you can add them in the comments. But remember, I will not post "doctors" that have practices outside FDA, AMA, AAP, or CDC approval. While you may have found them helpful, I feel it would be irresponsible on my part to include questionable practices.





Friday, January 23, 2015

Keynote Address at UN Conference on Antisemitism

The French philosopher Bernard Henry-Levy gives the keynote speech at the UN Conference on Antisemitism. It is important to note that Henry-Levy's family fled Algeria at the outset of that country's civil war due to the egregious outbreak of virulent anti-semitism.





Transcript of Henry-Levy's statement:

Against the New Anti-Semitism: Remembering the Holocaust Protects Us All
      Even if the Palestinians were granted a state, antisemitism would not dissipate one iota.

In Europe and elsewhere, faulting the Jews is once again becoming the rallying cry of a new order of assassins. The United Nations was founded to fight this plague. This assembly was given the sacred task of preventing those terrible spirits from reawakening. But they have returned - and that is why we are here.
 

It is not accurate to say that the policy of a particular state - I am referring, obviously, to the State of Israel - generates anti-Semitism. I have seen European capitals in which the destruction of the Jews was nearly total, yet where anti-Semitism still thrives. I have seen others, farther away, where no Jews have ever lived - yet where the word "Jew" is a synonym for the devil.
 

Even if Israel's conduct were exemplary, even if Israel were a nation of angels, even if the Palestinians were granted the state that is their right, even then, alas, this old, enigmatic hatred would not dissipate one iota.

Today's anti-Semitism offers three shameful new propositions:
1) The Jews are detestable because they are assumed to support an evil, illegitimate, murderous state. This is the anti-Zionist delirium of the merciless adversaries of the re-establishment of the Jews in their historical homeland.
2) The Jews are all the more detestable because they are believed to base their beloved Israel on imaginary suffering, or suffering that at the very least has been outrageously exaggerated. This is the shabby and infamous denial of the Holocaust.
3) In so doing, the Jews impose on us the memory of their dead, to completely stifle other peoples' memories, and to overshadow other martyrs whose deaths have plunged parts of today's world, most emblematically that of the Palestinians, into mourning. And here we come face to face with the modern-day scourge, the stupidity, that is competitive victimhood.
 

Let us imagine a UN General Assembly in which Israel would have its place, its full place, one country among others, no more and no less flawed than others, bound by the same responsibilities but enjoying the same rights - and let us imagine, while we are at it, that you unanimously acknowledge it to be what it truly is: an authentic, solid, and rare democracy.
 

A world in which the Jews once again became the scapegoats for all people's fears and frustrations would be a world in which free people could not breathe easy and the enslaved would be even more enslaved.


A world without Jews indeed would not be a world. A world in which the Jews once again would become scapegoats for all people's fears and frustrations would be a world in which free people could not breathe easy, and where the enslaved would be even more enslaved.

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U.S. Ambassador Samantha Power:

"Rising anti-Semitism is rarely the lone or the last manifestation of intolerance. When the human rights of Jews are repressed, the rights of other religious and ethnic groups are often not far behind."

Her entire speech to the UN Conference HERE.

France's Secretary of State for European Affairs Harlem Desir:

"It is our responsibility, in the face of this resurgent evil, to denounce it, to call it clearly by its name, but most important, to act with the utmost firmness, wherever anti-Semitism rears its head in the world. ... Whenever someone attacks a Jew because of what he is, he is attacking all of us, the community of nations."


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So why is this speech on my autism blog? As I continually remind everyone, hatred of Jews is the canary in the coal mine of a society devoid of respect for those that are different, either in dress, speech, or ability. Whether it was the Nazis, who started their mass slaughter of the untermenschen by killing off the disabled, or in today's world where antisemitism abounds in societies that deny human dignity across the board, it is important to remember, as we saw so recently in Paris, that fascism, hatred and sheer evil, always starts with the Jews but it never ends with the Jews.

Social Justice, Humanity and Autism


UPDATE: I just found this article discussing the speech by the ambassador from Saudi Arabia. After Bernard Henry-Levy gave his impassioned address above, particularly how using Israeli issues with the Palestinians as an excuse for antisemitism is a vile assault on civil society, the Saudi Ambassador had the chutzpah to say that it is Israel's fault and its relationship with the Palestinians as to why antisemitism is growing worldwide. That a man who represents Saudi Arabia, a nation with one of the worst human rights records on the planet, should even be discussing how other nations should behave is quite the devaluation of common sense, but then again, at the UN, Saudi Arabia sits on the Human Rights Council, as well. So sadly in the end, even at the Conference on Antisemitism, there was unabashed antisemitism. You simply cannot make something that Orwellian up. HERE.

Moreover, apparently the Ambassador from Lebanon, reiterated the myth that Jews lived a free and happy life under Moslem rule, and that it was not until Zionism that things went bad between Moslems and Jews. Again raising one of the antisemitic canards that Henry-Levy had warned about.  I suppose someone should have handed the Lebanese ambassador MrGS' senior thesis on the history of Arab and Moslem antisemitism. The man obviously needs a good history lesson.




Sunday, January 18, 2015

Inside that Special Needs Village: whom to listen to and whom to ignore

Since we are going to be spending time discussing how to handle your child's special needs village I have decided to create a list of personnel that are essential to a well functioning machine. I have found that at any given time I have had at least half of this list (at times in life almost the entire list in fact) working in concert making certain that the boys functioned to the best of their ability. By the way the list is as valid today, for my young-men, as when they were in pre-school :

YOU
Psychiatrist
Psychologist (can be school personnel not only private; can include private talk therapy, CBT, social skills, circle of friends, etc)
Social worker (can be school personnel not only private)
Guidance Counselor (usually middle school and high school. Also becomes adviser in college and graduate school. Some high schools have Vice Principals that specialize in special education. This may also be your go-to person if your child is having issues either behavioral or educationally.)
Behaviorist (this is the person who takes your child out into society and teaches them how to be independent out in the world at large; life skills)
Pediatrician (preferably a developmental pediatrician if possible)
Internist (when your child outgrows the pediatrician it is essential that their main doctor understand that they have special needs and they will need to deal with them a little differently than with other patients) 
Job Coach  
Endocrine doctor
Neurologist
Nutritionist (because many of our children either have allergies, celiac disease, specific diets due to any number of issues etc, it is important to have someone with knowledge of  how food works into our daily lives. Doctors are not given the education to do this effectively. And making certain that our children get the right amount of nutrition, while taking care of their food needs, is essential to healthy growth.)
Occupational therapist
Physical therapist
Speech therapist
Special education teacher
Regular education teacher (includes professors in post-secondary education)
Special education director (both k-12 and college/graduate school. In post secondary education this person will help decide what is the best accommodations your child will need in college and graduate school. To this extent if there is a problem in college or graduate school you may also have to work with the Dean of Students as well.)
Para professional
Educational consultant
Tutors
Religious instructor and/or Youth Group leader (yes this is important for inclusion)
Sports coaches
After-school activities teachers (anything that your child enjoys doing that will add to their overall happiness and well-being, such as a piano or guitar teacher)
Advocate
Lawyer (estate and civil rights)
Family (while not all family understand, or want to understand the situation, some do and they should be part of the village. They can be a great support system.)

Note: I do not include anyone that provides therapies or drugs that are outside the FDA and medically approved regime for special needs persons. I have a huge issue with charlatans and those that pray on special needs families. Be careful.

People who are not necessarily part of the village, but may be essential to understanding how your child is functioning. Please note it is important to remember though, that the experiences that people talk about are particular to their situation. It does not mean what helped them or their families will work for you. But understanding how someone feels in any given situation, especially when your child cannot explain their feelings, both physical and mental, is important to having a starting place inorder to support them properly:

-Other parents of special needs children (both IRL, and on-line support groups): learning how other parents may have handled a particular situation is helpful in knowing when to get your warrior-parent-self in gear.
-Special needs self-advocates: sometimes talking to and getting advice from those adults who live with a particular special need is a great place to start in understanding your child. I found it incredibly helpful when I learned how painful sound is for someone with auditory processing disorder. It's not simply the fact that someone can be slow on the uptake when processing oral information, but at times certain types of sounds, particularly associated with decibels (which don't have to be as loud as you think), can cause intense pain as well.
-National and international organizations that provide assistance and understanding for persons with special needs. (This of course depends on the organization. Simply because an organization says it supports people with special needs doesn't really mean that they do.You will have to decide whether a group is appropriate for you even if it is not appropriate for someone else. Yes there may be some politics involved as well. As I mentioned in deciding who to choose as a parent coach, you need to be on the same page as the people involved in these organizations to get anything out of the support systems.)

People who will never be part of the village:

Trolls: be forewarned that there are any number of people who think they know about special needs and continue to harass any number of persons discussing special needs on line and IRL. They attempt to get a rise out of you and try to make you unsure about what your child's village has decided is best for them. Remember that trolls, who could be anyone from a family member, a school district committee member, to an anonymous person on the Internet have no control over your child's future. Only you and your child's village have any say over that future.

The sad reality is that there are any number of people who also think that simply because they have an opinion that it is valid. They also do not have an understanding of the law, which tends to be the case. When MrGS was brought back in district there were threats to sue the district for ruining their child's educational ability to get into an Ivy League College (I kid you not). Luckily the Special Education Director in our school district told these horrible people that the law is on the side of the disabled child and that if they want they can sue. But not only will they loose they will end up paying the districts costs.

I have been told on more than one occasion that special needs children should not have the rights that they do. This is usually accompanied by an assertion that tax-payers should not have to pay for their education or actually questioned why special needs persons need top notch education, when all they need is to get along in the world since they will not 1) go to college, or 2) never be independent, or 3)be a drain on society for the rest of their lives anyway. (PS I live in a really blue state.) Under these circumstances it is best to remain calm and try to explain to these people the reality of life. Many times it is merely a misunderstanding of how the world works, special needs, education and the purpose of community. Unfortunately, as well, there are many in this world who are simply ignorant and choose to remain so. Sometimes you need to simply shake your head, feel sorry for them and move on.

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Meanwhile over the following weeks we will be discussing the personnel in your village: Who they are, what they can do for your child, and how they all interact together.