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.