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Interview About IEP's, AAC, And Autism

The Autism presents an interview with Robin Hurd, a mother of four children and very experienced parent when it comes to handling the special education system, IEP’s, and working with teachers and school officials. Robin’s experience and words of wisdom in this area are very valuable for those who are already in the school system or those who are just about to transition into the school system. For many, early intervention services end at a child’s 3rd birthday and one of the options a parent has is to transition into a developmental preschool and to c

The Autism presents an interview with Robin Hurd, a mother of four children and very experienced parent when it comes to handling the special education system, IEP’s, and working with teachers and school officials. Robin’s experience and words of wisdom in this area are very valuable for those who are already in the school system or those who are just about to transition into the school system. For many, early intervention services end at a child’s 3rd birthday and one of the options a parent has is to transition into a developmental preschool and to create an IEP for your child. The information Robin provides will certainly be helpful to those getting ready to navigate through the complex world of the Individualized Education Plan.
Alicia: Thank you Robin for doing another interview with us. This time around we’d like to address the issue of working with schools in developing an IEP. For those readers who are totally new to the concept of FAPE or Free and Appropriate Education, and the IEP, or Individualized Education Plan, maybe we could start with some basics such as what an IEP is supposed to accomplish, who is invited to be a part of the IEP team, and how the process works in general as each state is a little different. 
Robin: Alicia, an IEP, or individualized education plan, is a legal document that spells out what your child is to learn and how they will learn it.   It lists accommodations that your child will need to learn, and support people who will provide either therapy or consultations for the teachers. This list could include physical therapists, occupational therapists, speech pathologists, assistive technology specialists and behavioral support people. The IEP also has a section where special equipment is listed: wheelchairs, special seating, communication devices, and so on. The IEP is important because the education your child will receive is based on what the IEP says. The IEP team (people who come to the IEP) should include the parents, teacher, and any other people who will be working with the child. AS a member of the team, you are allowed to invite people who are not part of the school, but can give input about your child and her special needs.   This might include a case manager or a therapist who is working with the child in a different setting. Generally the people who are providing early intervention services are invited to the transitional IEP—the first one you have with the new school.
Alicia: The laws concerning IEP regulations are very complex. There are classes that specialize in this subject, lawyers that specialize in IEP / Special Education, and advocates that do the same. There are books and websites devoted completely to the subject and every facet of IEP regulations and it’s easy for a new parent (and even an experienced one!) to get lost in all the information. How can a parent keep from drowning in the IEP ‘deep end of the pool’? Where’s a good place to start for parents, regardless of what state they live in? 
Robin: IEP’s ARE complicated, and it has taken me a long time to feel comfortable with the process. How I like to explain the writing of IEP goals is to break the goal into 2 sections: the “what” section, and the “how” section.   I begin the goal with the “how” section.   For example: given daily opportunities to use color words in the context of ever changing activities, the student will demonstrate a knowledge of the 8 main colors by using appropriate color words 9 out of 10 times. The last section is the “what” section, which tells what the child is supposed to learn.   It is important to think about the “how” as well as the “what”, so that the WAY your child is being taught/tested on the skill to be learned is right for the disability.   Many of us have children who don’t transfer a skill from one setting to another very well. If we leave out the “how” section, the child will most likely be shown flash cards on a daily basis. Knowing that this flash card is green does not necessarily mean that our kids will transfer that to understand that the cup, or the crayon, or the grass is also green.   We can and should specify that learning green will happen in the context of ever changing activities, to help that transfer of information take place. (Not to mention to make it fun and interesting!)   The “what” section is the part that teachers are generally most concerned about. They want to be able to easily document that the child is meeting their IEP goals; in some cases, their job depends on it. Imagine someone following your child around with a pencil and paper, writing down all of the right answers, and then tell this person when to stop writing, because the child has learned the subject well and can move onto something different.   Now you have the “what” part of an IEP.
There are many good books on the subject, and lots of information available, but it can be overwhelming.   If you begin to read and get overwhelmed, take a break.   Think about how your child can learn the next thing normally developing kids learn, and devise a goal that will help your child to do that in the way he or she learns best. Focus on looking at example IEP’s and seeing if they answer the questions “how” and “what” in a way that makes sense to you and works well for your child. Then write a goal that reflects what you want your child to learn and how you want them to be taught.
Alicia: The new buzzwords in education these days are ‘inclusion’, ‘co-teaching’, ‘collaboration’, and ‘differentiated instruction’. Could you take a minute to give us an overview of these topics and what that this really means to parents looking to create a quality IEP? 
Robin: Inclusion means that your child is in a classroom with regularly developing kids. This may be part of the time (gym, music, art and recess,) much of the time (those listed, plus science and social studies) or all of the time. Co-teaching means that the person they are talking about (often the speech pathologist) is helping the teacher teach the class. Translation for parents: the teacher gets a break, and your child doesn’t get one-on-one! Co-teaching is not always a bad thing; we just need to be aware that it means that your child is not getting one-on-one time with the person who is co-teaching. Your child may need a mix of co-teaching and one-on-one, and you can ask for it in the IEP. 
Collaboration means working together. How this affects your child depends on the situation where the word is used. Ideally, if your child is in inclusion, there should be collaboration between the special educator (or learning support teacher) and the inclusion teachers. In order to make this happen, you may need to request extra time for collaboration for the people who need to collaborate! It’s not fair, but often teachers are asked to use their lunch time for collaboration. Along those lines, you may also need to ask for extra time for the staff to plan adapted teaching materials to use with your child. Teachers often take home work to do, but when they have a child with the need for extra adaptations, this adds a greater burden and may mean that your child doesn’t get as much help as they could if you build in extra work time.   
The last word that you mentioned is “differentiated instruction”. In a nutshell, this means that in an inclusion class, all of the children receive instruction geared toward their individual level and learning style. While the rest of the class is studying the weather map and how to read it, a child who cannot yet read well is matching the symbols the weather guys use on their maps with pictures of the various kinds of weather instead of words.   All the students may be studying ancient Egypt, but some are learning by touching tactiles of the pyramids, some are looking at photos and some use crayons and pencils while others are using assistive technology to draw and write about what they see/touch.   Knowing a little about what these words mean help parents to feel less like they are in a foreign county trying to speak a foreign language. Many of the terms express the ideal situation, not the norm in many of our schools. Knowing about the terms can help us to bring about the ideal situation in our school, both for the teachers and our children.
Alicia: What are some accommodations and modifications that are used in the schools under a child’s IEP?
Robin: Items in the IEP can be equipment that your child needs to allow for learning: an AAC system, a special seat, for example. It can also be staff: an aide or the therapists that may support your child. An IEP can also list the teaching modifications your child will need to be successful. This might include a picture schedule, additional time and/or advance warning of schedule changes or transitions (when possible) or other supports to help your child process directions and focus and attend to the activity at hand. Along with these, you will want to make sure that a home/school communication book is a written part of the IEP. IEP’s also include what educational, behavioral, speech, OT or PT goals your child may be working on in the next year. A child with autism may have sensory integration goals built into the IEP, should definitely have a specified amount of speech therapy (alone, with others, in the classroom, or a combination of these).   If large motor skills are a concern, the student should also have goals addressing this built into the IEP.
Alicia: Because your son’s use AAC devices, I’d like to take a moment to discuss AAC and IEP’s specifically. What are some of the biggest issues concerning these two topics? Where can parents turn for help with integrating an Augmentative Communication device into the classroom?
Robin: Training is one of the biggest barriers to seeing an AAC system implemented in the classroom. Once an AAC system has been chosen, the IEP should specify training for the classroom teacher and aides as well as the Speech Language Pathologist working with your child. Generally, the companies who sell the devices make this available. In addition to training the staff about how the device works, make sure the training includes some teaching strategies. The AAC Institute Parent’s Corner Columns also offer information that parents can read and share with their child’s school staff about specific topics important to students who use AAC. Feel free to visit the site often (new articles are added monthly) and print and share anything that you find helpful.
An example IEP goal for a student who uses AAC could be: Given daily opportunities to greet his peers, the student will greet others with reduced levels of prompting at least once each day. How this generally would fit into the daily routine is that students would be asked to greet each other during circle time, or morning meeting. This student would be meeting his goal if he is able to do this with less and less prompting as the school year progresses. 
Another very important goal for students who struggle to identify and talk about their feelings might be: Given opportunities to talk about how he, other children or story characters feel, the student will be able to accurately identify feelings based on visual or auditory clues with reduced levels of support from the staff.   With this goal, the staff will begin teaching about the feelings by saying the feeling word and giving a clue about how she knows. “Look at Suzie. Her eyebrows are wrinkled and her hands are clenched tightly.   I think she is angry because you took that toy.” Eventually, the teacher can point out how Suzie’s eyes and hands look, and the child can come up with the word “angry” on his own. The final step (this may take more than one year) will be for the child to identify the feeling completely on his own, with no clues from the teacher at all.
Alicia: Speaking of AAC and technology, it appears that more and more technology is being used with special needs students and there is somewhat of a discrepancy between what student’s are bringing or needing to use in the classroom and what teachers know how to program, use, or integrate into everyday class in terms of technology and computers. How do you think parents and educators can address these problems? 
Robin: Parents who know how to use their child’s equipment should feel free to work with the school staff to help them get comfortable using the equipment. At the beginning of the school year, I go in a day or 2 before school starts and show the staff the boys’ technology and what it does. I also give my e-mail and encourage them to e-mail or call if they have questions. (At that time we make any adjustments to their seating system, so everything is ready to go before the first day of school.)   One word of caution to parents is to offer support, but allow the school staff to also take some responsibility for learning/using/ maintaining the equipment.   You can be TOO involved! The staff needs to gain a comfort level with the equipment which can only come if they work with it on their own. (How would you feel if someone was always looking over your shoulder?) Many companies offer training on their computer programs and assistive technology. Much of this can be accessed on the computer. Both parents and staff should take advantage of what is offered.
Alicia: Sometimes the relationship between teachers and parents or IEP teams and parents can get rather contentious. Sometimes it feels that parents and school staff are working on opposite ends of everything. How do parents start off on the ‘right’ proverbial foot when working with teachers, staff, and IEP team members and develop a good working relationship with these professionals? How do you get back on track if the relationship between parents and schools has already totally degraded?
Robin: What a difficult question! Let me tackle the idea of starting on the right foot first. I like to bring snacks to big meetings. IEP’s for my twins can be very long meetings, and a snack says,” I appreciate that you have taken time to work on this with me”.   It’s also hard to consider someone an enemy if they are feeding you goodies!   Another mom says that she has developed a “persona” that she “puts on” for an IEP meeting. She basically “play-acts” the role of a caring, kind but firm parent.   Having this role-play mentality helps her to maintain composure even if the IEP threatens to get difficult. As a parent, you have the most power over your child’s IEP, but you have to know what your child needs to be successful in school, and be unafraid to ask for it. No matter what is talked about in the meeting, if it doesn’t make it into writing, it doesn’t legally have to happen. (Note: be sure to check over the final copy of the IEP to make sure everything you wrote into the working draft made it into the final one. Sometimes things get left out accidentally)
Alicia: Through the years you have been working with the schools, what do you think are the biggest mistakes people make when going through the IEP process and how do new parents avoid making them?
Robin: The biggest mistake is to go into the meeting with no ideas of your own for what your child should be learning in the next year, and how your child will learn that best. You can avoid making this mistake by spending some time looking at sample IEP goals and either choosing ones that work for your child or writing your own based on what you see in the samples. Making a list ahead of time of any equipment that your child will need is a good idea, too. You can decide if they can use something similar to what you have at home, or if they need exactly the same thing in order to be successful. 
In addition to this preparation, be ready with a list of things your child can now do. There will be “current levels” section of the IEP, and the more specific you are about what the child can now do, the better the plans for the future learning for your child will be.
Alicia:  Recently, we were discussing some of our favorite books and I mentioned having just read a few oldies but goodies, Frames of Mind: The Theory of Multiple Intelligences by Howard Gardner and Seeing Voices by Oliver Sacks to name a few. I think this is relevant to discussing education and special needs children because they emphasize such wonderful points. Sacks’ emphasizing that language, any form of language, needs to be introduced and taught as early as possible. And of course, Gardner’s theory that there are different types of intelligences than what just a general IQ score can tell us about a person. How do you think that this applies to special needs children, those who use AAC, those who are nonverbal, and the world of special education?
Robin: Gardner’s multiple intelligences are so important to children with special needs simply because they DO learn differently.   Teachers are generally aware of the theory of multiple intelligences, but they may not apply it to students who have a disability label. When we first told the school our middle son has an autistic spectrum label, the first comment from his teachers was, “But he’s so smart!” Yes, he IS smart, but his brain also works like people’s brains that have autism. “Smart” is not the deciding factor on whether a child has a disability!   Especially for children with autism, their “persona” is made up of a strange mix of abilities (I won’t call this savant: it’s just the things they are good at, like it is for other kids!), differing processing (sensory integration or auditory processing issues), and inabilities (to decipher the nuances of personal interactions). 
If we can help our children and their teachers to understand how our child learns best, as well as some ways they simply don’t learn well at all, we do our child and the teacher a big favor. For my son Wesley, we might say things like, “You have a really good memory and are great at spelling words.   Sometimes, though, if the teacher gives you a big assignment that isn’t due right away, you aren’t sure exactly what to do when you get home and try to explain it to me. It helps you to explain it better if you have something written down.” Another example is, “Your nose is much more sensitive than other people’s noses. Sometimes the smell of a new book is so annoying to you that you can’t keep reading it. Most other people just don’t notice the smells you do.” Once the child understands what is happening, he can learn to troubleshoot his problem areas. Noise can be a huge area of frustration for kids on the spectrum. Knowing that they are going to be bothered by sudden noises, even if they don’t seem loud to others, can be extremely helpful for both the child and the teacher. The teacher can warn the student of upcoming loud noises (or mom can warn the child before she begins to vacuum the rug). The child also can use that knowledge to explain to others why he is “having behaviors” that seem outside the norm after a startling noise has occurred. The child can also share in the problem solving with adults around him. If the vacuum is a big problem, he can give suggestions what might help make it easier (often with lots of adult encouragement and suggestions and maybe with pictures of some of the options)
I love Seeing Voices by Oliver Sacks, because of the reminder that early success communicating to others is key to later success in reading, writing and communicating. Our kids on the spectrum all struggle with communication, even those who can speak. Having communication successes builds confidence and makes our kids more willing to try again at something that doesn’t come easy to them. The more early communication successes we have, the better!
Alicia: What do you think the future will hold for special education? What would you like to see happen in schools throughout the country concerning the needs of students who require a little bit more or who learn in different ways?
Robin: Right now, the push in special ed. is inclusion: getting kids with special needs into the regular classroom as much as possible. Too often, this is happening without the additional training that regular ed. teachers need to understand and involve our kids in their classrooms. I would like to see inclusion continue, but with much more support for the regular ed. teachers who simply haven’t had the training in special needs students or the assistive technology that can help them. Regular ed. teachers also may not be comfortable with the level of classroom predictability and the visual supports that students with autism often need to reduce anxiety and to learn best. The increasing training would result in special needs kids participating fully in the classroom and learning just like their peers.  
I also want to see that teachers and textbooks begin to teach in a way that research already shows can help students improve their language skills.   All of the fast paced, visually based technology, along with the abbreviated communication of instant messaging that kids are exposed to, reduces the focus on language skills.   As parents and teachers, we need to be more intentional about helping kids learn to use words and sentences throughout their day. Add to our technological world a disability that affects language development and/or speech, and we must be even more focused on using every chance we have to practice saying things to others. Shifting from a vocabulary based way of teaching (memorize these words and their definitions and you’ll do well on the test) to a concept based way of teaching (tell me what you know about why we have 4 seasons) can make a huge difference in how well our kids express themselves.
We here at The Autism would like to express our gratitude to Robin for taking time out of her very busy schedule to help us understand more about IEP’s, the IEP process and how that applies to children with Autism and those who use AAC devices. You can find out more about Robin and her work at The AAC Institute and at the Parent’s Corner there where Robin writes a monthly column for families with children who use augmentative communication. You can also find Robin at the Google Group AAC Parents, a listserv for parents whose children use augmentative communication devices.

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