The National Association of School Nurses (NASN) has created a great Back-to-School Checklist for families. It contains some tips that apply to parents or caregivers of all children. There is also a series of tips especially for parents/caregivers of children who have health concerns.
Even though school has started, it’s never too late for a good idea. Check it out!
At least once each day we get a call from a parent who is trying to find an advocate for their child. Often they want one to go to IEP meetings with them. We explain that ECAC is a Parent Training and Information Center and that our goal is to help parents become effective advocates for their own children. We then offer to try to help and invite them to tell us what is going on with their child. Most of the time the parent will proceed to tell their story and we go on to provide individual assistance in whatever form is needed for that specific situation.
A few parents, however, will go right back to their original position. They declare that they need an advocate and, if we won’t go to the IEP meeting with them, they ask us to identify someone else who will. Those calls sadden me because the parent usually ends the call without giving us a chance to help them.
“Advocates” come in lots of different forms and a parent’s experience with them can vary tremendously. Some organizations will allow their staff or volunteers to go to IEP meetings with parents. There are educational consultants and other professionals who will serve as advocates for a fee. There are also individuals who have made helping families with school issues a personal mission.While it may meet a parent’s immediate need for support, sometimes using an outside advocate does not result in long-term benefit to the parent or student.
Occasionally, an advocate will take an adversarial approach that increases tension and creates additional barriers to communication and collaboration between home and school. Such situations are never in the best interest of the student. If you ever find that you have associated yourself with someone who seems more interested in winning a fight than with improving your child’s education, you should seriously consider limiting the potential damage by not inviting them back for a repeat performance.
Another problem that often happens with professional advocates is that they tend to keep knowledge to themselves rather than pass it on to the parents. This generally means that the parents do not learn the skills that they need to handle future issues on their own.
Working with your parent training and information center will help you better understand educational jargon, special education processes and policies, the rights that you and your child have, and how you can help shape your child’s educational experience. It is our job to make sure that you have the information and skills that you need to successfully advocate for your child today, tomorrow and every day after that. Everyone knows that knowledge is power. YOU are your child’s most important advocate. Be a powerful one!
By Debra Pickens
“If you don’t ASK, they won’t TELL!”
Have you ever had a feeling in your gut that something wasn’t right? When the Director of Disability Services told me that they didn’t know the Braille special math code, and that my son should drop College Algebra, I knew immediately why I had that feeling in my gut. “Here we go again, I thought. Another battle to fight!”
My son Billy was born on February 13, 1997 with Norrie’s Disease. He is totally blind with progressive hearing loss. Billy received early intervention services in the home and daycare. We established his IEP when he turned three and most of his one-on-one Specialists transitioned with him to public school, where they had a Visually Impaired (VI) resource room with a full-time Teacher of Visually Impaired (TVI).
Billy learned how to read and write Braille early. With the help of the TVI, Braillewriter and Braille Note taker, Billy was on the A/B Honor roll throughout his 12 years of public school. He graduated with a 3.5 GPA and a strong desire to attend a four-year college. He knew that there would be obstacles, and he had learned how to advocate for himself. What he didn’t know is that he would not have ACCESS to his academic materials in a timely manner when school started.
We met with The University’s Disability Services in late June and Billy’s counselor emailed his accommodation letter out to all of his professors early July. The letter told them “What” to do but not “How” to do it. When school started at the end of August, we found that his College Algebra class would be conducted mostly online, which was not in the course description when he registered. If you don’t ASK if it is an online course, then they want TELL you. We immediately reached out to the Director of Disability Services for guidance. Her advice was to drop the course until they could figure out how to get him ACCESS to the material. We knew that was not an option. He only had registered to take 12 hours and if he dropped the course, then his financial aid would not be granted.
The second suggestion was to audit the course or take an incomplete until he could obtain ACCESS to the material. Billy decided that he wanted to try using a one-on-one personal assistant to read to him and assist him in navigating the online system. This did not work because his one-on-one personal assistant did not know how to teach him College Algebra. We are still working with the Director of Disability Services to receive his quizzes and tests in Braille, which is his preferred method of communication.
The next battle was with his Theater class. The “Plays” were emailed to him as photo copies or in a pdf document. The documents would not translate to Braille on his Braille Note taker. We didn’t know to Ask them to convert to a format, which could be saved on a digital card and transferred to his Braille Note taker for him to read it in Braille, and they didn’t Tell us. He sat in class one day while the rest of the students were taking a quiz and he didn’t have ACCESS to the quiz in Braille. The inexperienced professor told Billy that she had reached out to Disability Services to ask “What” and “How” to get him ACCESS to the material and no one had responded.
By this point, Billy was overwhelmed and finally reached out to Mom for help. I communicated with the Director of Disability Services via email, telephone and face-to-face. I found out that all of the information submitted to be brailled a month ago had not been brailled yet, including the syllabuses for his classes. All of his professors were willing to make accommodations for Billy, but didn’t know “How” to do it. The Director of Disability Services had to reach out to them individually and explain the process of getting Billy ACCESS to his course materials.
The technology battle is still ongoing. Billy met with the AT Specialist at the University several times, but the AT Specialist did not know how to use this specialized equipment and Billy had a hard time understanding his accent. We had to request training through Division of Services for the Blind (DSB) and we are still waiting on a response. In the meantime, we paid for an AT Specialist who knows Billy’s specialized equipment to travel to Charlotte and train Billy on how to use some new technology. I regret that I did not include more detailed technology goals within his IEP starting in middle school.
The Orientation and Mobility (O&M) battle was by far the worst transition experience we both encountered. I sent Billy’s class schedule to DSB in early July. He was referred for O&M services in late July. He did not start receiving services until late August. She worked with him only 3 hours per day for about 3 days and she was not available during Billy’s first week of school. I had to pay for him to have a one-on-one personal assistant to help him get around the campus during that first week. The O&M Specialist was also not trained to teach someone who was born Blind and needed sensory orientation as well as mobility directions. Once again I had to pay for someone to come from out of town to train Billy on how to use the GPS Trekker.
Along the way I began to question whether or not college was for Billy? Now I know that, regardless of the obstacles we face, with or without a disability, it is okay to REST but you should never QUIT! Therefore, when I wake up in the morning, I will continue to ASK and FOLLOW UP until I find someone who can TELL us not only “What” to do but “How” to do it!
One of the most basic advocacy tips for parents is to make contact with your child’s teachers at the beginning of the school year, or anytime new teachers or service providers become involved. One purpose for this initial contact is to introduce yourself, exchange information about how each of you prefers to be contacted, and to establish a good working relationship long before there are problems to tackle. Another important purpose for this first contact is to share some vital information about your child, such as the fact that the child has a disability and an Individualized Education Program (IEP) or Section 504 Accommodation Plan. Sometimes classroom teachers are not made aware of these things right away.
Beyond the nuts and bolts of diagnoses, accommodations, modifications, special education services and such, it is important to make sure that the people who will be working with your child have a sense of who that child is as an individual, unique human being. Some parents simply write a letter, others have created brochures and PowerPoint presentations. ECAC has developed a couple of tools that make it easy for parents to share important information about their child with others.
Painting the Big Picture This is a worksheet that offers a way to quickly share information about things such as your child’s likes, dislikes, strengths, successes, challenges, as well as your dreams and visions for your child’s future. In each section there is also a place to share tips and successful strategies (what works) that help your child overcome difficulties and build relationships with others. There is even a place to capture Other Helpful Information that doesn’t fit anywhere else. This could include information about special healthcare needs, dietary restrictions, fears, unusual responses and things that can be done to calm your child when he/she becomes upset. Having a written document to refer back to will give teachers and others a big head start as they get to know your child!
ECAC’s Student Snapshot serves the same basic purpose as Painting the Big Picture, but it mainly focuses on the most important information that will make the biggest difference for your child. Areas of concern could include things like emotions, communication, sensory issues, medical conditions, academic needs, etc. In addition to teachers and other school staff, ECAC’s Student Snapshot can be shared with childcare providers, summer camp staff, Sunday School teachers, Scout leaders, etc. It provides a description of something that the adult may notice, an explanation of what that probably means, along a suggestion or two. Statements could go something like this:
When you see that I’m not raising my hand to answer questions, I’m probably not confident that my answer would be correct and I don’t want to embarrass myself. You can help by only calling on me when I do raise my hand.
If I ask to use the bathroom in the middle of an activity, it means that I cannot wait until the next break. You can help by letting me go immediately so that I do not have an accident.
If I’ve been having problems with asthma lately and I seem unusually hyperactive, it may be a reaction to the medicine that helps me breathe better. Please try to be patient and find ways to keep me occupied so that I don’t drive you crazy.
Teachers can also share these tools with parents so that they can get to know their students more quickly. It would also send a clear message to parents that you care about their child. Regardless of who reaches out first, sharing important information will help the people in a child’s life work together as a team. This will give the child a much better chance to have a successful experience.
As the parent of a child with a disability, your first responsibility is to make sure your child gets the healthcare, support and education that meets his or her needs. Participating as an active and effective member of your child’s IEP team, and forming good working relationships with the staff at your child’s school are key ways to accomplish this. However, there are decisions that are made on lots of different levels that also can impact your child’s education and opportunity to be fully involved in their community. Think about how you might be able to influence some of those decisions in a positive way.
- School Improvement Teams and Parent/Teacher Organization- You can make sure that school building-level decisions take students with disabilities (SWD) into consideration. Decisions about equipment purchases, school activities and even procedures for communicating with parents can make a difference in whether SWD are looked at as an equal part of the school community or are overlooked altogether.
- School district Parent Advisory Boards- Parents have an opportunity to discuss issues, solve problems and do future planning with special education administrators at the same table.
- Local School Board- They set policies that apply to the whole school district and also approve budgets for how funds will be spent. Most school board meetings provide a time for public input, and Board members can be contacted individually as well. You can express an opinion, point out a problem, or even ask for their assistance.
- Task Forces- From time to time school systems or other governmental entities will create a task force to address a particular issue. These groups are usually made up of a variety of stakeholders. Most of the time there is an opportunity for parents or citizens to volunteer to participate on them.
- State legislators and the State Board of Education make critical decisions about funding, curriculum, staff qualifications, graduation requirements, public preschool programs, discipline rules, and so much more. Join an email list that will allow you to keep up with things that are being proposed, so that you have a chance to offer your input before the decision is a done deal.
- Get involved with local support and advocacy groups. There is power in numbers and this is also a way to share information about things that may be important to you or your child.
These are just a few examples of ways that you can make your voice heard and make sure that the people with the power to make decision think about how those decisions may impact people who have disabilities. So tune in, look around, ask questions and step up to make a difference in how the system works. Don’t watch things happen. Make things happen!
We often have to remind parents of children who receive special education services that it is the school district as a whole that is responsible for providing a free appropriate public education (FAPE) for their child. They are not limited to the resources within their child’s specific school building. This would seem like a no-brainer, but it is surprising how often that detail is missed when an IEP team or other school staff are trying to address the needs of a student who has a disability.
School staff will sometimes only think about the personnel that is currently assigned to that school when they are considering instructional strategies, adult-to-child support, equipment and assistive technology, behavioral interventions and supports, etc. Sometimes good ideas are dismissed because “we don’t have the resources for that.” Lack of resources is not a legitimate reason to fail to meet a child’s educational needs, but it is also a reality that resources are not unlimited.
One of the qualifications to serve as the LEA Representative on an IEP team, is for that individual to have knowledge of the resources of the entire school district or Local Education Agency (LEA). The LEA Representaive should be able to tell the team about LEA staff with special expertise who can be brought in as consultants who can provide ideas, training or help create a plan of action. Behavior Specialists and Psychologists can lead the functional behavior assessment (FBA) process and help develop positive behavior support plans. Reading specialist can help identify which reading program might be a better fit for a particular student. Specialists can also help staff better understand a particular disability, how it may impact the child in question, and offer research-based interventions and strategies that have been proven to be effective. Many school systems have staff who can conduct assistive technology assessments and help identify devices or equipment that might be appropriate for a specific child. Other specialist have much to contribute as well. Somebody just needs to invite them in!
There may also be specialized programs offered within a school system that not everyone knows about. In a worst-case example of that, there was child who received only very limited home bound services for months due to his behavior. The school had told the parent that they had tried “everything” before removing the child from the school. After the parent sought help from the Parent Training and Information Center, an IEP meeting was held with several Exceptional Children’s Department central office staff members present. It turned out that the school district had three different alternative education programs that could have provided this child with a full-time education in a less restrictive setting. These programs were not considered because the people in the school building were not aware of them.
Many state education agencies also offer consultants who can be called on for help, often at no cost to the school district. There may be centralized funds that can be used to meet a student’s disability-related needs. There may also be clinicians and programs available within the local community that can help either during or outside of school hours.
The bottom line is that school teams should keep looking and asking questions until they find something that will work for the child. When they have tried everything in the school building tool box without success, they should go out and get more tools. Giving up or settling for anything less than true FAPE is not an option.
For students in middle and high school it is extremely important for parents to keep up with the courses that they are taking. The classes should offer the right amount of challenge (not too easy, not too hard). They should be preparing your child for whatever their goals are for life after high school. More importantly, the courses need to be chosen so that they meet the graduation requirements for your school system. With many schools using computer programs to create schedules for students, it’s not hard for the needs of individual students to be overlooked.
For many students who have disabilities, course selection is even more critical. For some students it will be important to make sure that they are placed in the course sections that are co-taught by both regular education and special education teachers. This can offer real-time assistance and support to help students be successful with grade-level material. The co-taught classes can be selected in the areas most likely impacted by the student’s disability. Sometimes the assumption is made that, because the student has an IEP, they should automatically be placed in the lowest level course available. This approach would keep many students from building on their strengths to reach their full potential. Students who need support in some subjects can also take typical or even honors classes in subjects that are areas of strength for them.
These days, most high schools are using block schedules that cover the entire content of a course during a single semester. It may be important to make sure that the courses that will be most challenging for your child are not all piled into the same semester. With thoughtful planning, the school can create a schedule that spreads the work load out more evenly. For example, your child can take two really hard classes at the same time plus a support class and an elective in an area of interest. This kind of planning from the very beginning will usually allow students to complete all of their graduation requirements within 4 years so they can graduate with their peers. Even if they have to pick up a summer class or return for an extra semester, the goal is that the student experiences success and gains knowledge that will help them throughout their life. The extra time will be well spent.
Parents also need to look out for other kinds of scheduling problems:
- Make sure that courses are taken in the right sequence. The level1 course should come before the level 2 course.
- Make sure that your child is not assigned to a course that they have already successfully completed. With rare exceptions, they will not earn course credit the second time around.
- Make sure that your child was not placed in an elective course that they have no interest in, or one that is a poor fit, just because there was space in that class. Forcing an extremely shy kid to take a drama class will probably not end well.
- Make sure that your child is on track to graduate when expected. Your child could be taking math and science classes that are counted as “electives” that do not meet the graduation requirements for that subject area. If your child comes up short by missing even a single graduation requirement, they will not get a diploma. At least once a year have your child’s guidance counselor review the courses that your child has taken and compare them to the courses required for graduation.
Read your child’s class schedule carefully as soon as you get it. If you see anything on that doesn’t look right, contact staff at the school immediately. Go to the school in person if you need to. The sooner any problems are corrected, the easier it will be for your child, and the better their educational experience will be.
Part of the excitement of going back to school is thinking about the fun parts of the school experience. Many children look forward to playing with friends during recess, having lively conversations at lunchtime or on the school bus, and field trips that bring history, art and science up close and personal. Many schools also offer extra-curricular activities that range from sports, music, and drama to special interest or service clubs. It is through these activities that many students form lasting friendships, discover gifts and talents, or gain experiences that help prepare them for future careers.
Students that have disabilities should be encouraged to consider becoming actively involved in all parts of school life. By law (Section 504 of the Rehabilitation Act of 1973), they should be given an equal opportunity to participate, but sometimes that message is not clearly communicated to the students, or to the adults that make the extra-curricular activities possible. In some schools, notices about club sign-ups, team tryouts or driver’s education courses are not even distributed in the special education classrooms. It’s hard to make a choice when you don’t know what the options are.
School staff may need to be more intentional in their effort to publicize these opportunities throughout the entire student population. Parents can also ask about what’s going on at their child’s school and the process for becoming involved if their child has an interest in a particular activity.
Some students with disabilities may need accommodations, assistive technology or other supports to successfully participate in their chosen extra-curricular activity. They may also need accommodations for some of the non-academic parts of the regular school day. IEP teams and 504 committees sometimes overlook these times when they are discussing the child’s educational needs. In some cases, this amounts to a missed opportunity to enhance the child’s school experience by supporting them through their disability-related challenges, or continue to work on IEP goals in a non-classroom setting. For other children, such an oversight can set them up for avoidable social or behavioral difficulties.
The good news is that IEPs and Section 504 accommodation plans are living documents that can be revised whenever the need to do so arises. Teachers, coaches and other adults also have the freedom to make many accommodations on their own when they identify a need for them. It almost goes without saying that a child may need different types of support for different activities.
The I’m Tyler video http://imtyler.org/index.php/video/ does a powerful job of making the point that students with disabilities are capable of participating in a wide range of activities when the adults around them focus more on what they can do than on what they can’t do. A little effort, imagination and open-mindedness goes a very long way toward giving students with disabilities the chance that they deserve to experience each day as full members of their school and larger communities.
So many parents will be able to relate to your experience. Beautifully written!
So today was the big day. We had our eligibility meeting at the school to determine if our fourth child, a third-grader, qualified as being on the autism spectrum according to the school district’s definitions. And I’m happy to report that the IEP team (consisting of the school psychologist, the speech therapist, our son’s teacher, the assistant principal, our private psychologist, and Katie and me) all agreed that he met the district’s criteria for being identified as ASD.
A Good Day.
On one level, not much has changed as a result of this new designation. He is still receiving the same services he received under his previous designation as “Language Impaired.” We’ll revisit his Individualized Education Plan later in the school year to see if he needs more help than he’s currently receiving.
But having him identified as being on the autism spectrum is also a safeguard for the future…
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As parents, we are convinced that we know what’s best for our child, or at least what they need. When it comes to school, we may have very strong opinions about how our child learns best, how much structure they need, what kind of teacher they would work well with, what kind of classroom setting would work, or the amount of support that they need. This is especially true for children with disabilities who may require an Individualized Education Program (IEP) and specially designed instruction to meet their unique needs. Wouldn’t it be simpler if we could just tell the school what to do?
Unfortunately (or maybe fortunately in some cases), that’s not how educational decisions are made. Parents have a voice in developing their child’s IEP, but they do not have the power to control the decisions of the IEP team. The IEP team may decide to agree or disagree with any suggestion that a parent makes. Other decisions, such as school assignment, teacher assignment, curriculum, school bell schedule, and graduation requirements are usually made with no input from parents at all.
It is sometimes difficult to accept decisions that you honestly feel are not in your child’s best interest. But, if you want your child to have a fighting chance to be successful in a less-than-ideal situation, you will need to be careful about the spoken and unspoken messages that you send your child. If she hears you using catastrophic language and talking a lot about how terrible things are going to be at school, it will be very difficult for her to expect to have a good experience.
I worry about children who spend all summer listening to their parent wage battle after battle in a losing effort to overturn some school-related decision. Maybe they wanted their child to be promoted, or maybe they wanted to keep them at the same grade instead of being “pushed through” to the next one. Maybe they wanted to keep their child with the same effective or caring teacher as last year, or maybe they wanted to get away from one that they felt was not a good match for their child. Maybe they wanted their child at the neighborhood school, but the special education class that he needs is at another school, or maybe they were hoping to transfer out of a school with a bad reputation or one that was in the wrong part of town. Maybe their request for an important accommodation, piece of assistive technology, or one-on-one support person was denied. Whatever the issue is, the child may have heard or overheard the parent repeatedly talking about how awful it was going to be for their child if _________ did or didn’t happen. Some parents even promise their children that,”I’m not going to let them do this to you.” What happens to your child if you lose your battle and things don’t go the way you want?
It is great, and often necessary for parents to advocate for their child’s education. However, there is a right way to do it and a point at which you need to shift your focus toward helping your child accept and be comfortable with the situation that they will walk into when they return to school. To the extent that you can, keep you child out of your conflict with the school. Try to have conversations when you know that your child (or his/her siblings) is not going to hear you or see your look of frustration afterward. Communicating with the school in writing helps with the first part of that suggestion, but you still must watch your body language and what you say to others about the situation.
If it becomes clear that you have a less than 70% chance of getting what you want for your child, then you should make a deliberate effort to help your child be open-minded about what might happen in the future. Every option has pros and cons. Try to think and talk about some possible positives of things going the other way. For example, if your transfer request was turned down, you can talk about the shorter bus ride, the friend from last year that will be at that school, the fact that the school is newer, has a better playground, or the fact that your child already knows their way around the building. If your child was retained, you can talk about how this will give him a chance to catch up with his skills and be a much stronger student when he does move on to the next grade, the fact that he can still spend time with his friends outside of class, or how he will have a head start on his classmates because he won’t be hearing everything for the first time.
Even while you are hoping for the best, you should prepare your child for the worst. Do your very best to help your child go into the next school year with hope that things will go well. Continue to work on academic, organizational or social skills over the summer to help your child become a stronger student. Look for ways that you can work with the school to create a successful experience for your child, even if things didn’t exactly go the way you wanted them to. Helping your child develop resilience, the ability to bounce back from hardship, will be a greater gift than smoothing out every potential bump in the road to adulthood. You know what they say, “when life gives you lemons, make lemonade.” What you definitely don’t want, is to have your child go to school looking and feeling like he just sucked on a giant lemon!