Thursday, February 26, 2015

Understanding Yin and Yang

From TEdEd

Sartre said that we are our choices. To that end I found this explanation of the two-sides of the human spirit very enlightening. (No I am not promoting Daoism. However, whichever religion you  find  fulfilling (even atheism) then I hope it gives you peace.)  In truth, I have always been drawn to the Yin/Yang symbol and it is interesting to have an understanding, even a precursory one, of what it means.

It's been called "The wisest book ever written," and it's very short, too. If you want to know more about Daoism (often spelled "Taioism") you should definitely check out the Dao De Jing. This excerpt attempts to define the Dao as a force in human life. Do you know anyone who seems to live this way? How so?

"The supreme good is like water,
which nourishes all things without trying to.
It is content with the low places that people disdain.
Thus it is like the Dao.
In dwelling, live close to the ground.
In thinking, keep to the simple.
In conflict, be fair and generous.
In governing, don't try to control.
In work, do what you enjoy.
In family life, be completely present.
When you are content to be simply yourself
and don't compare or compete,
everybody will respect you. "
(Dao De Jing 8, Stephen Mitchell Translation)

The more you know about China, the better you will understand Daoism. It's been said that Daoism is the Chinese cousin of Buddhism, which grew up in India before spreading all over Asia, and eventually the world. Here's a good website which also can lead you into Chinese medicine.

Here is an interesting article about the Daoist idea of "wu wei." It's about doing without doing, or why too much effort can be self-defeating. It's from Psychology Today, but you don't have to know anything about psychology to read it.

The founder of Daoism was Laotsi (sometimes spelled "Lao-Tzu"). He even has a facebook page!

Monday, February 23, 2015

I have been autistic all my life and I turned out fine....

CM2 had to give a presentation in his public speaking class today. He chose the issue of mandatory vaccinations. Needlesstosay he is for vaccines, and thinks the government should pay for it. In his words..."poor people- duh!"...  (I am not certain that he knows about medicaid and child health insurance for the poor in many states, but my son, the self-proclaimed Social Justice Warrior,  understands that not everyone has enough money for even life's necessities.)

Meanwhile, he did his research, proved how vaccines do not cause autism and presented a cogent argument. In the end he even asked, what was so wrong with autism anyway? He added, it is far worse to die horribly from a preventable disease...

"I have been autistic all my life and I turned out fine..." he told his class.

UPDATE: Son got an A- on the speech...yeah him!

#StayWeird, Stay Different

Graham Moore, last night's Oscar winner for best adapted screenplay for The Imitation Game, gave this very inspiring speech about being different.

Here is his story:

When I was 16 years old,I tried to kill myself because I felt weird and I felt different and I felt like I did not belong. And now I'm standing here and so I would like for this moment to be for that kid out there who feels like she's weird or she's different or she doesn't fit in anywhere. Yes, you do. I promise you do. You do. Stay weird, stay different. And then when it's your turn and you're standing on this stage, please pass the same message to the next person who comes along.


So for all of our children who some like to call weird or different...remember it is those who are different who actually make a difference.

Sunday, February 22, 2015

Book Review: Make Social Learning Stick

Social conventions are the bete noir of  a person on the autism spectrum. Most socialization does not come naturally to them. At every stage there are nuances and signals that they need to be taught.

Social regulation is important for everyone inorder to have a successful life. Reinforcement  and support, while generalizing the ideas taught over the years is never inappropriate. Whether we continually practice dinner conversations, appropriate phone conversations or even how to tell a joke, it is always important to keep in mind that social skills, if not practiced and used will be lost.

To this end  I recommend the book Make Social Learning Stick, by Elizabeth A. Sautter, MA CCC-SLP. It is a colorful, informative, fun filled charted lesson plan for how to help anyone learn those little annoying socially appropriate realities. In other words, if you follow along you can make social skills fun.

Actually I enjoyed reading the book. I found it informative, filled with many new ideas and programs to use on that social and emotional journey. I always say that no matter how long you have been a warrior-parent you can always learn something new.

From the AAPC Publishing Website

"The Mom’s Choice Awards (MCA) is a globally recognized program for establishing the benchmark of excellence in family-friendly media, products and services. These products and services are evaluated by a respected panel of judges bound by a strict code of ethics. This award ensures expert and objective analysis of elements including production quality, design, educational value, entertainment value, originality, appeal and cost. Know somebody who has autism spectrum disorder? This book offers a “social learning diet” of concepts and actions that can be used in everyday life to increase verbal and nonverbal language, listening skills, understanding of hidden rules, perspective taking, executive functioning, and more. The activities are recipes for social and emotional learning for which parents, teachers, and therapists typically already have the ingredients. With close to 200 fun and easy activities, including contributions from leading experts, this book offers numerous ways to embrace teachable moments throughout daily routines without having to do extra work! Events like getting ready for school, preparing dinner, going to the doctor, and celebrating Thanksgiving become opportunities for teaching and reinforcing expected social behavior for those with autism spectrum disorder. Geared toward children in preschool through elementary school, the ideas are meant to inspire creativity that suites each specific child. Activities can be easily tailored to meet a child’s developmental level, needs, or challenges."

Or go to the author's website HERE.

Thursday, February 19, 2015

The Social Conventions of Power

From TedEd.

This is a very interesting look at how "power" in society works and how the individual person can harness that power. It is a structured look at social convention and advocating for yourself and your ideals.

Watch Eric Liu talk more about these ideas in his TED talk, “Why ordinary people need to understand power.” Interested in what power really is, who has it and why? Take a look at Citizen University, watch some great presentations about various topics at Citizens University on YouTube, and consider attending the next conference. Watch this introduction by the Citizen University founder Eric Liu. In which direction would you like to push your country?

What would a citizenship agenda look like? How can we revitalize citizenship for every person in America? Read these articles: We Need A Path To Citizenship for All Americans, Not Just immigrants and Why Civics Class Should Be Sexy by Eric Liu and find out. How can we “Americanize” the current curriculum in schools to envelope these ideals? Ask you global studies teachers about their ideals and how the current situation can be changed for the better. Find your voice. Ask for changes.

Is being a good citizen important to you? What have you learned about citizenship in school? Read this TIME article: Can We Teach Kids to Be Good Citizens? Get some new ideas! What would a civics curriculum look like? Here are some ideas from Stanford Center on Adolescence. How does your school compare? Has your schooling taught you to be both a good student and a good citizen? If you really want to take this idea to another level, plan a Sworn Again America Ceremony! Follow some of the ideas presented in this TED Ed lesson and inspire a group of people to get involved with you.

What is patriotism? Does the word make you uncomfortable? What does it mean to you? Read this article and find the three components of citizenship. Then, watch as Eric Liu talks about his speechwriting experience for President Clinton, how to ”show-up,” and get involved locally. Have you ever been involved or wanted to be involved in a community concern? Become something other than a spectator!

Who Will “Us” Be? Watch this video from the Aspen Ideas Festival and think about, “How you are American.” What is your story? What is your family’s story? Do you know your neighbor’s story? Have you ever asked? Watch Eric Liu’s interview about his book, “ A Chinaman’s Choice.” Find out his story.

For more on this educator and author follow him on Twitter: @ericpliu or visit the Guiding Lights Network.

Monday, February 9, 2015

Aspects of a Special Needs Village: Conflict Management

Anyone who has taken a business course, or in fact has a business degree, will be familiar with many of the concepts discussed in this post. What I have attempted to do is take the ideas inherent in business management and apply them to our everyday special needs village model. Management after all is management, and knowing how to get your team to produce a viable product, in this case creating a workable educational model for your child,  is the sign of a successful business.

Whether we like it or not, in reality there is probably going to be a time when we will not get along with everyone in our child’s village. There will undoubtedly be times when members will clash and disagree about approaches, realities and even proposed short-term and longterm goals. You may even come up against members that have decided not to listen to you and they will do anything they please with your child. EX: This would be the circumstance when the school assigns a particular teacher to your child, against your wishes. Under these circumstances you have no choice but to try to deal with the teacher, the administration and the school bureaucracy. This is also the time when, despite all of your excellent management skills, a good lawyer may come in handy. I had requested that my son not be assigned a particular teacher in high school. I knew that she had no business teaching anyone with autism. They did not listen. By the middle of the school year, when she failed to organize him, teach him study skills and basically follow the IEP, I asked the VP and the special ed director if I needed a lawyer to get her to do what she was supposed to do? They did work with her to get her to support him properly after that. While it wasn't his best year, it wasn't his worst and the school did manage her to make sure she supported him to the end. On the other hand, the next special education teacher (11th and 12th grade) was terrific.

When these events happen it is essential that we do NOT loose our ability to think and act rationally. Easier said than done. I know. It is true that the most difficult part of raising a special needs child is to be able to lift yourself out of parent-bear mode and take a step back. Take several deep and large breaths. Then sit down and plan a realistic form of attack. Now it can be a full frontal assault complete with a shield wall, or a pincer strategy. It really depends on the issues, the number of persons involved, and the level of support your child actually needs to be successful in their day-to-day functioning.

You may also come across those in your village, who think they, and not you, are the lead. They may be of the mistaken belief that they have the ultimate say as to what happens with your child. After all they have the degrees and years of practice behind them. This is when you need to set everyone straight. You need to remember that you still hold the most important degree in dealing with your child; a lifetime of dealing with your child. Their experience is generalized, but that doesn’t mean it will actually benefit your child. And yes, while we want our children to “generalize the specifics” that does not mean that we want generalizations employed when it comes to our children.

As we always see, each autistic child is unique in their own way and even those with similar issues respond differently to different therapies and medications. So it is essential that you always remain the head of your child’s village, no matter what a teacher, psychologist or social worker may think. The reality is that only you can truly direct your child’s future. You are their greatest advocate, until that time when they can advocate for themselves.

Common Issues in Special Education Disputes:
1.     Eligibility: what happens when your child definitely has a disability but the district wont provide support due to legal ineligibility
2.     Failure to Provide an appropriate education: make sure the IEP is specifically tailored to your child
3.     Failure to implement the IEP: when the school fails to provide the supports and services outlined in the IEP
4.     Inappropriate Discipline: “zero tolerance”
 (Adapted From Emotions to Advocacy)
Rules for Negotiating

1.     Listen to what others have to say about your child. (Others may have interesting incites. But never let anyone tell you your child cannot do something-within reason of course.)

2.     Ask questions about problems, programs and solutions.

3.     Talk about your child through examples/storytelling…let them see your child as you see them. It is important that they see the child first, not the disability. This is a flaw in the system. Since they have to identify the child within one of the 13 categories, the idea that your child is a child, sometimes gets lost. It is also important because if they see the disability first, there might be a tendency to pigeonhole your child. The idea has to be, figure out what the child wants, then considering the disability involved, come up with a plan to get them there.

4.     Bring food…it makes the meeting pleasant and less fraught with negative overtones. Food has always been a great ice-breaker, from Biblical times to the present. If you treat everyone with respect you usually get it back in return.

5.     Be respectful. Don’t be condescending and dismissive of what others have to say.

6.     Stay calm. DO NOT CRY. DO NOT YELL. You will be dismissed as a nonserious person. If you cannot keep your emotions in check (yes not an easy thing to do) then if they want to deny your child services, they will psychologically link on to your negative actions as a reason to dismiss your claims about problems, issues and supports needed.

7.     Laugh. In truth, sometimes things that your child does, doesn’t do, or circumstances that they get themselves into are just plain funny. You would laugh if they were typical students so why not if they are nontypical? In fact laughing about anything in a meeting is not bad. Laughter is good medicine for breaking the tension and to add to the notion that everyone present is a human being. EX: once in elementary when the school psychologist and special education teacher were relating the outcomes of testing, they told me about some answers my son gave. They were not only par for the course about how he viewed reality, but they were very funny. We laughed about it. Not because we didn’t care about him, not because we were making fun of him, but because his answers were so typical of him. Son was taking the state English exam. On the third day he was supposed to write an essay. Instead he wrote on the top of the page to the State Examining Board: “if you want to know how well I read and write come to my school and watch me.” He walked over and handed this in. The teacher took one look. Told him he couldn’t hand that in and that he was to go back and write an essay. Well he harrumphed and then did what he was told. She kept the paper though to show me. That was just so typical of him. I still laugh ten year later when I think about it.

[Adapted, From Emotions to Advocacy]
Management Styles

The following are types of persons you will have to learn to deal with, within the village. Needlesstosay, many people think the “accommodating” and “avoiding” person should be you, the parent. While at the same time you may have to deal with a "competing" individual who thinks that they will take over and make all the decisions. In truth," collaborating" and "compromising" persons may be able to get some resolution on the table, but the truth is that also may not be where you need to go for your child. There are any number of situations where you will not want to compromise or collaborate simply because you know what you are asking for, for your child, is needed.

On the other hand, being able to compromise and collaborate is an essential part of keeping a positive spin on your child’s education. Remember that many of these people will have a day-to-day interaction with your child and the goal is to keep that all positive. It is essential that you also not dismiss out of hand therapies or accommodations offered. You may be concerned that it will not work or that they need more support than they are given. You are probably right.

However, what you also need to keep in mind is the fact that schools have bureaucracies, laws and rules to follow. It is important to note that for many schools, until there is established under guideline A, a benchmark of success/failure, they may be prohibited from actually giving your child the preferred guideline B. So it is important to stay abreast of all the new laws, regulations and requirements from both the federal government as well as your State Department of Education. Keep yourself informed about what is required of your district and how many hoops they have to jump through as well.

Unfortunately, the negative aspect of the IDEA is the reality that your child needs to be basically failing academically, behaviorally or emotionally, in order to get the help they need. It is also important to remember that simply because your child does not meet the “legal” level of support, does not mean they don’t need some form of help. It is essential at that moment to find out what alternative systems exist within the school district or even ask what outside supports they recommend.

Accommodating: This style indicates a willingness to meet the needs of others at the expense of the person's own needs. The accommodator often knows when to give in to others, but can be persuaded to surrender a position even when it is not warranted. This person is not assertive but is highly cooperative.

Avoiding: People tending towards this style seek to evade the conflict entirely.

Collaborating: People tending towards a collaborative style try to meet the needs of all people involved. These people can be highly assertive but unlike the competitor, they cooperate effectively and acknowledge that everyone is important.

Competing: People who tend towards a competitive style take a firm stand, and know what they want. They usually operate from a position of power, drawn from things like position, rank, expertise, or persuasive ability.

Compromising: People who prefer a compromising style try to find a solution that will at least partially satisfy everyone. Everyone is expected to give up something, and the compromiser him- or herself also expects to relinquish something. (Manage conflict with another person)]

Win-Win Solution

Meanwhile, even though every child does not necessarily fall into an IDEA category, this does not mean that there is not a village out there for them. In fact, your child’s village will still include the teacher, possibly the school psychologist and at times even the special education teacher assigned to their grade. Also you may want to add a private tutor, a therapist or a social worker into the mix.

Most general education teachers want their students to succeed. They do not go into teaching for a child not to learn. So if there are issues it is important that you open up about them right away and discuss what can be done to help your child. Also an important point to remember is, don’t leave the teacher as the only one who is required to “teach” your child. Never mind that today’s curriculum, especially in the younger grades, require parental involvement, truth be told there are any number of parental responsibilities when it comes to interacting with the classroom and actually backing up what the teacher tells you your child may need.

In the meantime, designated or undesignated student, parents should keep these simple rules in mind:

First thing is to decide what is most important for your child: Goals. Why is your child having issues and what can be done about it? EX: If your child is having comprehension issues then you and the teacher need to figure out what can be done about that and how you two can work together to facilitate your child’s education. (This has nothing to do with the goals on the IEP. This is basically the first step in analysis of trying to figure out what is going on with your child and whether you need to step in and request special supports for them.)

Now that you have established goals the question is what have you got to Trade in order to make this happen? And yes, while if you have a designated child the school has to help them. However, it doesn’t hurt to show an interest in what is happening in the world around your child either. 

In most classes there is only one teacher and anywhere from 20-30 children. They could use an extra pair of hands. Offer to volunteer in the class. Show that you are concerned not only about your child, but also about the class or school as a whole. You want the school to go out of their way for your child, offer to go out of your way for the school. Showing interest in what others think is important can get you everywhere. (Note: I worked for years for the PTA. In fact the only PTA committee I refused to serve on was the special education committee. Not only did I want people to see beyond the boys’ disabilities, I wanted to show the school system and the teachers that I cared to make their entire jobs easier and provide support district wide. Interestingly enough, when I ran a writing support program for students in the elementary school, most of the parents involved had IDEA designated children. )

Again, unfortunately at times you need to come up with Alternative approaches.  It is important to have several different plans laid out about how you want to tackle any issue that presents itself. It is fine to try to work with the classroom teacher, however, if that doesn’t work out, can you go to an administrator? Can you go to the district director if it gets really bad in the classroom? What is your relationship with the school district personnel including psychologists, social worker and therapists? 

Who has the power in the relationships and how does it effect their interactions with your child? It is very interesting that understanding your districts political machinations can’t hurt. EX: In 5th grade when the special education teacher and general education teacher were fighting over control of my son, I went to the VP of the middle school and demanded he do something as my son was just acting out because of the absolute confusion he was dealing with. The VP tried to get me to understand the situation he was dealing with. I told him to tell his people to grow up. In the end the district ended up bringing in an outside consultant and switched the teachers around.

While you do not want to rock-the-boat with the people that are directly responsible for your child on a daily basis, you also want to ensure that your child is getting the appropriate support and respect that they deserve. You will have to decide if it is better to ride out the rainstorm, or cause the destruction of a hurricane. Consequences are important to keep in mind. Remember though, building after a hurricane is usually better, stronger and more formidable once everything is finally hashed out. 
In the end when dealing with issues, the question will become do you eventually need to find your child a good lawyer? Is this the only way to get your child the education that they deserve and are legally entitled to, or can you negotiate your child’s way into an acceptable situation?

This is a cost-benefit approach. What are your Expected outcomes for your child? What Possible solutions, based upon all the relevant information given is to be expected? How can you reach the outcomes that you want in the best way possible for your child? Also does it pay to hire a lawyer? Is it worth the angst, emotional upheaval and drawn out friction with the school district? What will you achieve? Is it better to take that money and provide the therapy privately or buy the needed software or laptop on your own? These are just some questions you need to ask yourself in this situation.

Remember that ultimately it would be good if everyone wins in any situation. Unfortunately that is not always possible especially  if you are dealing with a teacher or a district that refuses to compromise or negotiate a different solution for the issues your child faces. 

[Adapted from (Negotiating Skills)]

Common Parent-School Problems
1.     Problem: different views of the child
You may actually be presented with different versions of your child. Take to heart what other people see as obstacles or problems that your child may be having. Of course, it is always difficult hear negative things about our children, but remember that most professionals are not trying to be mean. What they are trying to do is simply relay information about what issues need to be addressed. The trick here is not to let them get away without fixing the issues. Don’t let them tell you that your child has problems, therefore they cannot learn, they cannot achieve and they cannot have dreams.

2.     Lack of information about your child
We may not realize it, but not everyone in the village shares or knows all the relevant information about your child. In order to avoid any conflicts based on a lack of facts, make sure that everyone has the same information and is on the same page when it comes to short and long term goals.

3.     Lack of Options
Try to get as much information as possible about programs, therapies and solutions to your child’s problems.  It is true that not all districts have every kind of program. Not all districts want to spend the money to send your child to an out-of-district expensive program. Remember, your child is only entitled to an appropriate education, not the best education ever devised by humankind. So it is at this juncture that you would want to come up with some ideas that not only benefits your child, but can benefit the district as well. EX: our sons were entitled to ESY, but there was no appropriate out of district summer program. But there is a town camp. A group of us parents, went to the district and asked if they would negotiate a program through the town camp so that our children would attend and would also get ESY. It was a win-win for the town and for our children. The district saved a fortune on placement fees, the town who had to let our children into the camp and accommodate them by law (ADA) now had the district providing the support, and our children received an appropriate summer program among the community in which they live. The ESY also consisted of all therapies, educational pull-outs and one-to-one paras for camp as well.

4.     Hidden Issues
Keep updated on your child’s progress. It is quite possible that as therapy, education, and  support services continues, additional problems will need to be addressed. Now districts can add services without a formal IEP meeting, as therapists and teachers can address newly formed problems as well. (Note: services can be added without a committee meeting, but services cannot be taken away without a meeting of the special eduction committee.) It is important that everything be documented and in writing for all future reference.

5.     Feeling devalued
There are times that we tend to feel devalued by “professionals.” Unfortunately, this is not an unusual occurrence. Here is the rub: if your child is getting what they need, this is not about you. Suck it up. Let someone else think they are the hero for a moment. If on the other hand, this negative attitude goes hand-in-hand with your child not receiving the services and the quality education they deserve, then …see above for negotiating, management tactics. The truth is that we need to remember, that while we are the real lead in our child’s special need village, that village is not about us.

6.     Communication issues: being lied to, no follow-up, intention vagueness, intimidation
Here is the real problem in management and negotiating. The only way to get passed this issue is to require everything in writing and document, document, document. Take your own notes at all meetings, see if you can tape-record the proceedings (not necessarily  a legal right so be careful, don’t do it without permission). Make certain that if a program or support is offered have it spelled out for you exactly what the procedure for receiving that support means and how the district will go about procuring it. Stay on top of the people responsible for the service. Be a nag if you need to be, but be a nice nag. Don’t be intimidated. If you or your child is threatened report it to higher ups, or to your counsel. 

EX: we wanted to put into our oldest sons IEP that he will need support for after school activities in the high school. I mentioned this to the head special education teacher at the high school. Instead of saying “sure, of course.” He threatened my son that he wouldn’t allow any support for him and that he wouldn’t do any after school activities for special needs students at all.  I walked out and went straight to the guidance department and reported it to the head guidance counselor.  I told him the issue and then said, “This man is  now your problem. I expect something done about him.” In the end, they forcibly retired that head teacher that year. Also in college, we had one professor who also threatened our oldest son for asking questions. It turned out he had done the same to numerous students. There were students who had even put in formal complaints against this professor. The upshot was that the college asked him to leave mid-semester. One thing you need to keep in mind is that if your child is being threatened, if you are being intimidated, if your child is not receiving their appropriate educational services, then chances are there are other students in the same boat. Never be afraid to bring it to the attention of the persons with the power.

Now in the end, extreme conflict does not have to occur.  You never have to get to the point that you have to hire a lawyer. This is not necessarily due to the management and negotiating skills discussed here, but quite frankly, most teachers, therapists, psychologists, social workers, are there to help and not to hurt your child. However, if in the end all the tools discussed above come to naught, it is time to remember that noone has a right to let their ego stand in the way of your child's success. When all else fails, it is time to hire that special education lawyer.

[Information in this post adapted from the following webpages, articles and books.]
August Turak, “The 3 Secrets to Conflict Resolution,” Forbes, 9/10/2012

Jason Fried, “Managing Conflict,” Inc., July 2010


From Emotions to Advocacy, Pete Wright and Pam Wright, Harbor House Law Press, 2011

From Parent to Partners, Janis Keyser, Red Leaf Press, 2006

Partnering for Children with Disabilities, Janice M. Fialka, Arlene K. Feldman, Karen C. Mikus, Corwin Press, Inc, 2012

Relationship-Centered Practices in Early Childhood, Paul H. Brooks Publishing Co., Gail L. Ensher, David A Clark, 2011

The School-Home Connection, Rosemary A. Oleander, Jacquelyn Elias, Rosemary D. Mastroleo, Corwin Press, Inc, 2010
Also it is important to click on the Book Review page of this blog for additional books that are recommended as a place to begin your journey.

Check Practicality Page on Raising Asperger’s Kids
Check Advocacy Page on Raising Asperger’s Kids


Wednesday, February 4, 2015

Aspects of a Special Needs Village: Communication, a Two-way channel

The Essence of Education and the Lack of Magical Realism 

It is important that as you help your child begin their journey that you tell others within their village all about your child. Now the villagers will learn, overtime, who your child happens to be. But it wouldn't hurt from the very beginning that they have some positive ideas about your child. In school they will know about his issues. They have the IEP. Their job is to plan for those issues. They are not geared to plan for the times when your child presents as a delightful, fun loving, youngster of typical age. The villagers will not know the little things, the things they like and dislike. What makes them laugh. What makes them cry. They will not know the little idiosyncratic aspects of your child's existence. They will not know the things that make your child, your child; that vulnerable human child before them.

Some parents talk about their child during a team meeting, or during a transition conference. Others write a letter to all the members of the village. Which ever you choose to do, make the discussion as positive as you can. Don't get bogged down in the issues of the moment. There will be time to discuss all that. In fact, as you communicate throughout the year it is a good idea, especially at times when the going gets rough, that you communicate to everyone all the positive aspects of who your child just happens to be.

G.R.O.W. Model of communicating

Of Groundhogs, Snowstorms and Planning for the Future 

When discussing your child's goal(s), you can decide a long term and a short term goal.  In fact, these ideas are usually interconnected. These goals are also not necessarily simply what the "village" decides they should be. As the parent you can take the lead on deciding what would be best for your child's future. It is important to always remember, as well, that your long-term goals do NOT have to be realistic at the moment. (Mine never were and I am glad we aimed high for the boys.) The truth is that it is the incremental-short-term goals that get us all to where we are all going in the end.

Besides, as they master the short-term goals then the long-term goals just might take care of themselves. Also if they never reach the "outrageous" long term goal that have been set, but even fall just short, then you know that you aimed high enough to allow their abilities to show rather than forcing them to stunt their true nature. I always say expect the best from your children, they just might surprise you.

EX: You want your child's long-term goal to be able to hold an appropriate conversation. The short-term goal in that respect is that they understand the use of pragmatic language, as well as learn the Art of Conversation. So you create short-term exacting goals about interactions, sharing, and have the speech therapist facilitate age-appropriate conversation.

EX: We set a goal that the boys will be able to take care of themselves on a daily basis. For that our short-term goals were life skills such as laundry, cleaning, hygiene, shopping, cooking etc. Over the years they have learned to master all these life skills. In the interim we have also realized that there should be other life skills, such as when to know that someone is taking advantage or to understand when you are being scammed by phone or on the Internet. (Remember autistic persons tend to have a rather trusting nature.) Additionally, we have set the goal of graduating from school, getting a job (that with its own short-term issues), learning how to handle money (budget) and pay  bills, etc. It comes as no surprise that some short-term goals can actually even be long-term goals depending on how they are structured.

Reality Check  
E is for Examination ; Forgetting About Reality ; It's the Typical Stuff that Finally Gets You ; Flexibility and Reality ; Taking a Giant Step Forward and a Baby Step Back: An Autistic's Real Life Game of Mother-May-I ; Mother-May-I  Part 2: Oh Crap

Every starting point also has to have a realistic basis. You need to look at the situation that you are dealing with in order to create a viable program. Do NOT ignore the real difficulties of a situation, or dismiss events if they happen only once. For a true understanding of the work ahead of your child, it is unfair to that child to make excuses, or to ignore the issues that they face. It is also unfair to that child to make allowances for their disability, or even excuses for your own failings when it comes to what you know or don't know. This is when you really need to take a healthy examination, and understand just how much help your entire family needs, and how much education you require so that you can help your child accomplish their long-term and short-term goals.

EX: Many parents do not like the idea that their child may need a self-contained classroom, as opposed to an inclusive environment. Some parents won't like to admit that they cannot handle their child's overwhelming needs at home, and that they will have to find a therapeutic living arrangement for their child to thrive. We are all taught that as parents that parenting is an innate ability that we are born with, or that we learned as we watched our own parents raise us. But to be successful as the lead in your child's village, you must come to the realization that to ask for help, to acknowledge that you cannot do this alone, is the greatest thing you will do for your child. The truth is that a major aspect of loving your child is to be able to ask for help. For many parents this realistic understanding is a sign of failure.  This could not be further from the truth. In fact, this is the opposite of failure. This is perhaps the greatest accomplishment you will make as a parent;To know when you do not know what to do.

M is for Motivation by a Mentor ; The Importance of Role Models

Now here is where the thinking gets truly concrete. You have the goals. You know that you need help to help your child. At this point you, along with the Village, need to delve into the different options available for your child at this moment in time so that they can accomplish some of their goals. You also need not simply think conservatively here either. Think outside the box (now I am talking about supports and educational design, not medical. (I reiterate that if it is not endorsed by the AMA, FDA, AAP, or recognized medical authorities then it is NOT something you should do, and if you choose to try something like a gluten free diet despite your child NOT having celiac disease, do it in conjunction with your pediatrician, so your child's physical development is properly monitored.)

In fact don't be afraid to discuss therapies or programs that you cannot technically afford, or that your district may not provide. Not that it should make you feel awful and a bad parent, but once you understand how a particular "expensive" therapy supports your child then the Village may be able to come up with a viable alternative. They may be able to find something you can do at home that would be the equivalent of a particular  therapy or an accommodation at school that provides the same support without naming the program.

EX: When we first moved to our district, since the district followed the DSM diagnosis, and SPD was not a listed disability the district would not support SPD therapies. However, the OT consult knew that my son needed the SPD accommodation so she came up with programs for him and classroom supports that would help his sensory issues without listing that they were for his sensory issues. She found another OT issue and said the support was for that, which was easy enough since everything really is interconnected in the body anyway. This is what is meant by thinking outside the box. The box need not be turned into a hexagon, it only needs to have its boarders widened a little bit.

No Retreat and No Surrender: Getting Your Child to Act Like Britain Under Churchill

This final element is understanding what truly need to happen in order to get everything done. Do you understand what exactly stands in your way and how to overcome it? Which provider do you use for what issue, and how do you get them to approach that issue correctly? How will you deal with any push back from your child? What avenues can you take when the different plans don't work out?

It is interesting that in the discussion of the special needs village, the one aspect that noone really talks about is the attitude of the child. They have to have the will in order to bring about the change. What can you do to get them to basically buy into the program? remember you are all here, because the child is having difficulties. They may be tired. They may have given up. The trick at this point is to figure out a way for them to see the longterm benefits of what they are going to need.

EX: All throughout school my oldest needed a para. When he went to college he said he didn't want one. I thought that would be fine. He would have some transition issues but we would figure out a way to overcome them. I had no idea that in effect his functioning in class was truly terribly inappropriate. In fact, to transition in we had him take a summer course. After which I sat down with the professor at the insistence of the disability director so they could tell me about his issues. Now you have to understand that at this point the college wanted me to withdraw him from school despite how bright he was. I, of course, refused to listen or hear what they were saying about his behavior. So we went into the fall semester with no support for him. After a few weeks I got a call from the Dean of Students asking for a meeting. They again tried to have me withdraw him, but I insisted that at this point we try an aide in the classroom. (I think they relented because they did not realize just how truly bright he was and how with the proper support he would not only do well, but excel at school.)

Of course, it would be at my expense and I had to find the person. Luckily we had a wonderful young lady who was his para in k-12 school and who we had hired as someone to help me with the boys after I had had a really bad car accident. When we needed her for college support, she had just completed a masters program in school counseling and couldn't find a job in her field. Well, once she saw what was going on in school she was mortified that he had not learned how to behave in a classroom by this time (I at this point had some words with the special education director at the high school about this, since all my reports were that he was doing well in the behavior department in school before he graduated.) Our friend, the college para, set about righting all those wrongs in his behavior. Of course, he is still working on them, as it is not so much his behavior today as it is the generalized anxiety disorder and its effect on his day-to-day life that interferes with his independence.

But how did we convince our oldest to allow a para back into a classroom with him? First off we sat him down and honestly explained what the issues were. He actually had thought that he was handling the problems well and had no idea that his behavior was so untenable. Then we let him know that the para, someone he had know for almost a decade would be going with him. He not only liked that but embraced it as he knew she was and is considered family. He especially liked that over the year she became pregnant and eventually loved holding the baby when they came for a visit. We have a picture of him with her daughter. The baby is looking up at our son with a huge smile. She reacted to everything he said, as if she was familiar with his voice. Afterall they had spent 5 days a week for 8 hours a day together the entire time she was in utero.

The truth is that your child knows deep down inside when they are having a hard time and when they are not. If you are honest, forthright with them, explain how in the end this is good for them and it will make things easier they will probably be glad of it. It is your attitude that leads the way all the time. You be positive and your child will gladly be positive about the therapies, class pull outs, extra time needed for homework and everything else that goes along with helping them become the best that they can be.

Rules for Successful Communication

Actual types of communication:
Note: Not all of these types of communication are doable for every teacher-parent relationship; therapist-parent relationship; doctor parent-relationship. Additionally at different ages different communicative devices can and will be employed by the various members of the Village. The trick is to make sure that everyone is on board with what works best so that you, the Village leader, knows what is really going on with your child.

Back-to-school night: Make sure you go. In my district, it is standing room only for back-to-school night. They have special shuttle buses to take the parents and back and forth since the parking lot cannot hold everyone's car. On the other hand, when my father taught, he would maybe get 12 parents show up on back-to-school night and his numbers were considered high. Yes a child's success is directly elated to your enthusiasm for their education. He did tell me though, that it was the parents of designated children, and the highly achieving students, that did tend to show up.
Charts: Behavior, homework, skills, etc. I am not a big fan of these when a child is little. It can be really bad for the child's self-esteem to see that they are not getting "gold stars" for behavior when they really are trying their best every day. A note home in the Interactive journal will relay that there have been problems and what happened. You cannot expect a child to do better if you keep reminding them of all the mistakes they make. Positive reinforcement is the best. By middle school however, charts were sent home to keep me abreast of homework due, tests coming up (and the grades given). This was so we would know what the child had to work on at home and how the child was doing educationally. If there was a behavior problem, I got a call from either the guidance counselor, or the special education teacher.

Conferences/IEP Reviews (team meetings): We could call a team-meeting anytime we needed to discuss issues happening in school. They were not so common in middle school as they were in elementary school. And generally they did not happen at all in high school, except when the IEP meeting rolled around. In high school if there was a problem we generally hard from the special education teacher/case manager. And at times in middle and high school, if it was really bad, we heard from the Vice-principal. Note: I would always bring food. In fact they looked forward to the brownies and cookies every year. (I suppose I earned a reputation.) Once, in the very beginning of our journey, when I hadn't thought of bringing food for everyone in the meeting, and it was lunch time (meetings were running late as usual) I insisted the CSE head go grab something in the cafeteria because as I openly told him," I wanted him in a good mood when they made decisions about my child." He laughed, went and got his sandwich and brought it back to the meeting room. I found that if you treat the people in your child's village with respect that you generally get respect back.
E-mails: Teachers using email and your child using email to ask the teacher for help is a terrific tool. This way you can let the teacher, therapist, even the doctor know if there are any issues you need addressed.

Face-to-face (drop-off or pickup): Asking people in person about issues is sometimes the best. But there may not be time for a good chat at the very beginning or end of a day or session.

Interactive journal: This was my favorite form of communication. The special education teacher, or the para when the boys got older, would let me know how their day was and if there were any issues. They also let me in on all the good stuff too, so we could reinforce the positive.I would also give the school a heads up if there were any problems at home. Now if there were major issue, such as when my grandfather died, we went to the school and told everyone in person.

Newsletters/Memo/Notices: Some teachers do a classroom newsletter, which is nice so you know about everything going on in the classroom, not just what effects your child. An overview of everything is always best.

Phone calls: directly Speaking to the person (teacher, therapist, doctor) involved in supporting your child is always best.

Post-it notes: Sometimes a quick note on a school book or an assignment helps with understanding why a grade was given or what needs work.

Report Cards (IEP progress reports)

Web sites: Many teachers actually have websites, even in elementary school, today. This takes the place of the newsletter or memo. Many times the website has an email link, making it really convenient to contact the teacher.

Communication Rules:
***Don’t base your assumptions on the disability…. see the child first

Allow 24-hours for a response
Be honest 
Be proactive
Be respectful
Be thorough
Be truthful
Come prepared to meetings
Document everything: paper trails are your friend. Keep every scrap, every test result, every IEP, progress report, etc. Get redwells, folders and categorize everything, not only by topic, but year, provider and even issue if need be.
Learn to say, “I don’t know”
No surprises- heads up to potential issues

Communication Tips:

Aim high for your child
Be honest
Be interested in what the other members have to say
Be likeable (don’t become a bully)
Be objective
Be positive
Be sincere
Be very prepared
Don’t be afraid to ask questions
Don’t make assumptions
Find common goals
Go slow
Never, ever raise your voice (people don't listen when you yell at them)
Never let them see you cry (you will be dismissed as too emotional to have a say in the matter)
Read carefully (reports)
Speak your mind
Stay calm
Take a time-out if you begin to feel anxious or upset
Trust yourself

What to always keep in mind

Figure out the message that you want to be sending: Whenever you go into a meeting, take the time to write out exactly what you want to say; what you want to accomplish;what you see as the problems. Don't go off onto a tangent. Make your presentation succinct.

Remember that communication is not always verbal, body language says a lot: Sitting there with an angry look is not going to garner a positive response. It will only put people on edge. Even if upset, try to use good manners and an open personality. Use an opening posture. Sit erect, with your feet on the floor, hands on your lap (just like your mom taught you). You don't have to smile, but don't sneer or scowl either.

You are going to be sharing power over your child: This is not easy to do, but you must keep in mind that educators/therapists/doctors all have some form of input into your child's day. Figure out what that is and how to use it to your child's advantage.

Watch your tone and keep calm: Yelling, crying and general disrespect will get you no where. Remember how we talk to other people is something we teach our children on a daily basis. Make sure that when you speak you use an indoor voice, a friendly voice and modulate your decibels.

Information for this discussion adapted from the following books:

Building Bridges with Parents, Marilyn J. Montgomery, 1999, Corwin Press, Inc.

Coaching Questions, A Coach’s Guide to Powerful Asking Skills, Tony Stoltzfus, 2008, Tony Stoltzfus

Coaching and Mentoring, Eric Parsloe and Melville Leedham, 2009, Kogan Page

Coaching for Performance, GROWing Human Potential and Purpose, John Whitmore, 2009, Nicholas Brealey Publishing

From Emotions to Advocacy, Pam Wright and Pete Wright, 2011, Harbor House Law Press, Inc.

From Parents to Partners, Janis Keyser, 2006, Redleaf Press.

Partnering for Children with Disabilities, Janice M. Fialka, Arlene K. Feldman, Karen C. Mikus, 2012, Corwin Press, Inc.

School, Family and Community Partnerships, Joyce L. Epstein and Associates, 2009 Corwin Press, Inc.

The Heart of Coaching, Thomas G. Crane, 2012, FTA Press

The School-Home Connection, Rosemary A. Olander, Jacquelyn Elias, Rosemary D. Mastroleo, 2010 Corwin Press, Inc.


Also it is important to click on the Book Review page of this blog for additional books that are recommended as a place to begin your journey.