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Advocating for Change

Back to School Preparation Tips

Summertime is almost over, and it’s time to think about gearing up for school. This can be a welcome thought or a scary one! Even    scarier if your child is moving up and making a big change, whether it be out of RECC, into middle school, or onto freshman year in high school. These big moves are huge milestones for any child, but seem even bigger to our kids.  There are some things we can do to make this transition smoother for the kids…and for us!

Tip #1 : Review all of the information.  Make sure you have a copy of your child’s IEP and know what it says.  Be sure you understand your child’s schedule—the classes, teachers, and setting. Review all the materials sent home including the “typical” information from the school: bus schedules, orientation meetings, and supply lists. Don’t discount the information you can gain from these sources.

Tip #2: Visit school with your child.  Make a note of important dates, especially before-school orientations and back-to-school nights.  Plan to visit the school with your child. Meeting the teacher, locating classrooms, locker, lunchroom, etc., will help ease your child’s anxiety. Many schools have “Open House” the Friday before school starts. If not, call and schedule a tour before school starts. Take pictures of the building, hallways, classrooms, etc.  You can use them to create a social story or just to review.

Tip #3: Set up your house for school.  Select a spot to keep backpacks and lunch boxes. Set up routines for homework, school papers, etc.  Do this ahead of time, so the first day is smooth. Freeze a few dinners in advance or plan something easy. Clear your work schedule if possible and avoid business trips and stressful meetings for the first week. Anything you can do ahead of time to make the week go well is worth it!

Tip #4: Contact your teachers and school personnel.  Let the teachers know that you are interested in getting regular feedback on how and what your child is doing in school. Find out how the teachers like to communicate with parents (notes, e-mail, or phone calls). 

Tip #5: Keep a positive attitude!   Despite your best efforts, not everything always goes as planned.  There will be bumps in the road.  But keeping your head up and putting things in perspective will help keep you sane. This is a long road, and your ability to advocate without burning bridges is essential!

Written by Parents for Parents for the Howard County Autism Society

When the Bus Stops Coming . . . then what?

As parents of children who have IEPs, it feels like we are always thinking about what’s next—next IEP, next placement, next school, next teacher/team. . . . But do we think about those nexts without thinking about the bigger NEXT. What happens at age 18 or 21, when the bus stops coming? Is there life after high school?

Rationally we know there is but thinking about that bigger NEXT makes our head (and heart) hurt. What will my child do next?  Is college a possibility?  What about the supports that got him/her through high school? Can he live on campus? What about the world of work?  Is there an employer who will hire my child? And hire him for what? What job would be of interest? What is he ready to do? It can feel like there are more questions than there are answers. . . .

Plan, plan, plan. And the motto, “If you fail to plan, you plan to fail” couldn’t be more true! 

Here are a few tips to get you started:

Always start with other parents.  Talk to as many as you can who’ve been through it or are going through the same thing. Parents always have the best advice about what has worked and what hasn’t.  As we know, there’s what should be, what’s on paper, and what really is.  Parents are willing to share the ‘real deal’ and can help guide you. 

Learn as much as you can about what’s available. Do not rely on “the system” or “the experts” to know and guide you. The adult service world is incredibly complicated. Many people who work for various state agencies are not familiar with the other agencies, much less other departments within their own agency! So what’s a parent to do? Attend events and workshops. Search the internet.  Read as much as you can about what agencies do what. Become an informed consumer. 

Attend the HCPSS Transition Workshop Series. Each year, the series features a wide variety of topics that help you find your way.

Start early! Earlier than you think you should. IDEA dictates that transition planning should begin at age 14. That should be more than just a box check at your annual IEP. It’s a clue to parents to start thinking about the future. In middle school, should you know what job your child will have at 21? No, but the sooner you start the process of thinking about the future, the less daunting it is. 

Begin to think about your child in a different way. Try to think about him or her as an independent adult. What can you do now, at home and school, to foster that independence? Begin to build  independence skills in everyday activities, such as chores at home, money management, talking to the doctor, and ordering from the menu. Stop thinking: “there’s no way he can make his own bed  everyday!” The truth is, with some effort on our parts as parents, they will learn eventually. 

Presume competence!!! We want our teachers to presume competence, but do we always practice what we preach? Are we giving our kids time to learn new skills in the protected environments that school and home can provide? We’ve been to all the Paula Kluth workshops, and we always turn to the person next to us and say “if only the teachers could hear this message.”  But we need to be reminded of it all the time, as well. Can my child come in the house from the bus without me opening the door? I didn’t know until I tried it once. After telling the bus driver what we were doing, I watched from behind a curtain to see what would happen. Funny thing, he just walked in, put his back pack away, and got a snack.  All without me. A really proud moment, soon followed by the guilt of thinking about what else he can do if I let him. Had I presumed competence about him in different areas of his life?  The cold hard fact was no, I hadn’t. 

All this begins with a vision. Future planning is tough. It’s not easy to get through today sometimes, much less plan for 4 or 8 years in the future. Our kids can change so much, its hard to say what they can do so far in the future.  Remember this is a journey. It won’t happen overnight. Start wherever your family is, and begin there.

Written by Parents for Parents for the Howard County Autism Society

Preparing for the Annual IEP: Parent Tips

It’s spring and it’s the magical time of year when many of us have IEP meetings. Even if an annual IEP isn’t scheduled, many times there are spring meetings to plan for the next school year. Most of us focus on the IEP goals and objectives at these meetings, but what about all those other sections? Are they as important?

YES! As parents, you should get a draft IEP (and any supporting documents) home five days before an IEP meeting. Use that time to review not only the goals and objectives, but the other sections of the IEP as well.   Before you even get to the goals and objectives section, you pass two important sections, “Present Level of Academic Achievement and Functional Performance,” and “Special Considerations and Accommodations.” These two sections contain valuable information about your child. We often skim over these areas. Don’t overlook the value of these sections! 

Present Level of Academic Achievement and Functional Performance

The Present Level of Academic Achievement and Functional Performance is a statement that gives clear, objective information about your child’s abilities.  It should include information about academic progress, social skills, study skills, etc. Successful teaching strategies for your child should be evident from the Present Level of Academic Achievement and Functional Performance statement.

A great thing for parents to do is write your own “Present Level of Achievement” document.  Describe how you see your child at home.  How does he learn new things at home? Does she socialize? What activities is he involved with outside of school?  How does he react to change in schedule at home? This exercise helps you focus on an overall picture of your child. You’ll be in a better position to talk about your child’s learning styles and needs. Does your document on achievement match the school’s? If it does, great, you’re on the same page. If not, it could be that your child acts very differently at home than school. That’s ok, but it is worth talking about. Are there different expectations?  Do you implement different behavior plans or rewards? Is one more effective than another? These are great conversations to have with your team.

Special Considerations and Accommodations

The next important section is the Special Considerations and Accommodations (supplementary aides and services).  It follows that if you describe your child well in the Present Levels section, then you need to talk about what accommodations your child needs as a result of that description. This section details what accommodations and what modifications to materials, curriculum, and standardized testing are necessary. A discussion of communication and assistive technology (AT) is required. Any student with an IEP may benefit from supplementary aides and services. This section, though critical, is often overlooked and can be the difference between participating in general education versus a more restrictive environment. 

But how does a parent know what accommodations are available for his or her child? It’s one thing to say “whatever a student needs,” but what does that really mean?  Are there things that would benefit your child that you are not aware of it? We think of the usual-preferential seating and extra test time, but there may be others. It’s helpful to read through the accommodations manual available from the Maryland State Department of Education website. (visit the Accommodations and Modifications section!) 

Keep in mind that you don’t just pile on accommodations for the sake of accommodations. They should be based on current needs and data. More is not always a good thing. This happens frequently during a change in schools, especially elementary to middle, and middle to high. There is a tendency to pile on the accommodations to help make things smooth. Be sure to keep the accommodations age  appropriate—no more Elmo picture schedules on the desk in middle school. A picture schedule using sports teams taped inside an agenda book is more appropriate to use. 

None of this means goals and objectives are not important. They are.  They should be measurable, achievable in one year, and based on grade level curriculum. But just like with accommodations, more isn’t always better. A team can only work on so many objectives at a time. You can always add objectives or goals later if they the current ones are met.  

Written by Parents for Parents for the Howard County Autism Society



Middle School–Tips for the Transition

The tender ages of 11 to 13 may seem anything but tender, especially at the beginning of the school year. Instead, the middle school child is an unstable mixture of tantrums and drama, anxiety of embarrassment, and contradictions of wanting Mom and Dad nearby yet resisting help/support/interest of any degree. These are the joys of the middle school years: the huge transition from the younger dependent child to a budding, independent adult. The challenge for the parent and child alike is that, during these three years, it is difficult to guess on any given day where that child may stand along the spectrum of the transition.

A middle school child tries on the persona of an emerging adult, only to become fearful and race back to the comforts of younger childhood until he or she becomes ready to sample adulthood again. In theory, it is a wonderfully-designed process of stepping forward and backward while sampling new stages of growth. In reality, the process is both intoxicating and absolutely exhausting. Parents need to set firm limits to shield the child from unsuspecting dangers when they attempt to reach too far into adulthood. At the same time, they need to comfort the child’s fears when it all becomes too overwhelming. The parents’ ultimate reward is watching their child discover the person he or she is developing into.

During all of this activity, these children attend school and are expected to master a significant amount of material. There are many steps – some great and some small – a parent can take to help a child succeed during that first year in middle school. By remembering the developing stage of your child, the process can be made easier. But consider yourself forewarned as you enter the blasting zone otherwise known as the “Middle School Years!”

Before the school year even starts, take advantage of “Jump Start” or “Open House” opportunities to introduce your child to all that awaits in middle school. Walking down the hallways, seeing the new teachers, being in the gymnasium and cafeteria — and doing so with other kids they know — provide a great comfort to an anxious child. Most often, students receive schedules, get locker assignments, buy gym uniforms and start to become more familiar with their new school. This is a great time to introduce yourself not only to the team of teachers, but parents of fellow classmates since most middle schools are feeder schools to a number of area elementary schools. Many students will be meeting each other for the first time and forming new friendships, and their parents can quickly become influential in the life of your child.

If your child has a 504/IEP/learning plan, contact the guidance counselor assigned to your child’s grade level to share any concerns you may have. This counselor is responsible for reviewing the students’ learning plans with teachers. Rather than one elementary school teacher, your middle school student will now work with a small team of teachers, changing classrooms for each subject. These teachers work closely together, share observations, and offer suggestions for increased success for the entire team of students. Some unique learning situations require more communication with teachers than a written plan alone, and sometimes meeting with the team of teachers near the beginning of the school year may prove helpful. These meetings allow a parent to explain the issues in greater detail, to illustrate how a team approach between school and home offers the best chance for success, by offering methods that have been successful in past years, and troubleshooting areas of concerns in the middle school dynamic. Cultivate a team commitment to maintain open communication all school year long through additional meetings, exchanging notes and using online resources to email concerns.

Once school has started, identify small ways to help guide your middle schooler without stifling budding independence. Tape a copy of the schedule on the front of the binder or homework pad and make sure your child understands how the schedules change from day to day. Most schools have a sophisticated system of rotating periods to prevent the typical “early afternoon burnout” from affecting the same subject. Make sure your child can read the schedule rotation, and feels comfortable approaching new teachers should it become confusing. Taking concerns to school personnel is a student’s first step towards developing the vital tool of self-advocacy.

Organization takes on greater importance with seven periods’ worth of papers and study needs. Your child’s team of teachers will probably determine one preferred organization method for all students, and instruct that method. But no two individuals learn the same, and so too organizational needs may vary. The school may suggest one large binder, but your child may need individual spiral notebooks to help streamline his or her focus during class or when studying. A parent knows what truly is best for his or her child, and some adjustments may need to be made. It is best to discuss these concerns with the team to determine the best method for your child to be successful during the school year.

The actual school work can bring about a new level of discovery. Science comes to life through chemistry and physics experiments. Art projects might jump off the drawing pad and become a mural on a portion of the hallway. Social studies coursework broadens community borders and increases awareness of a global society. Homework and projects that accompany these new discoveries can be exciting, and overwhelming. Guiding the completion of such work requires a distant-closeness only perfected by middle school parents. Your child will insist he or she is grown up enough to complete the work independently, but really needs your presence in the room until everything is done. A backpack may not demand that you personally go through it each day, but you may need to remind your child each morning to do so. Your son or daughter may be great about stopping at the locker between classes to exchange needed materials, but you may need to send in a grocery bag or two each week to help remind them to clean out additional papers and items that gather weekly. It may be helpful to offer to read over homework sheets, but instead your child prefers to read them to you. It’s the gentle guidance of doing it together — and responding with appropriate assistance — that helps bring about the greatest achievement for your middle schooler.

The development of the adolescent brain proves that while children between the ages of eleven and thirteen are capable of more independent thinking and work, they still need as much parental attention and guidance as a toddler at this stage of development. Struggles for independence at the middle school level will echo those seen ten years ago. Children are learning to problem solve, think critically, plan and control impulses, and stand on their own two feet. At times they will stumble and want a nearby parent to pick them up and hug them. Other times they will scream at the first hint of assistance, instead picking themselves up and trying again on their own. On the surface, it may seem a bit different tackling middle school concerns, but underneath it is all part of the process of growing up.

Written by Parents to Parents for the Howard County Autism Society

Advocating for Your Child: Before and During the IEP Meeting

General tips: 

Remember– you are the primary decision-maker for your child. No changes in your child’s placement or services should take place without your approval, except in an emergency situation.

You are a member of the team. Work with the people who work with your child. Your success as an advocate for your child depends on working with others.

Be confident about your abilities and your rights; you know your son or daughter better than anyone else.

Talk with other parents to discuss strategies, common problems, and work for solutions. You are not alone.

Read about your child’s special needs. Talk with professionals and other parents to learn as much as you can. Try to have a complete understanding of your child’s special education needs.

Remember your child’s strengths. Try to keep things on a positive level.

Use the knowledge and skills you already have. Read about related issues, such as advocacy, communications and organizational skills, negotiations, and conflict resolution.

Keep up-to-date on state and federal laws governing education and special education. Participate in a workshop to learn your rights and your child’s rights. Become familiar with the basic terminology and acronyms used in education.

Keep records:

Be willing to create a paper trail. Develop a file system to organize all your child’s records, your notes, and communications including letters. Keep copies of papers given to you at school meetings.

Write down your child’s accomplishments. Keep notes about your concerns, questions, and answers.

Keep notes on phone calls and visits, and keep copies of all letters and records. Keep a meeting log, noting the dates and names of people involved. It is a good idea to confirm in writing what was discussed in phone calls.

Follow up phone conversations and subsequent meetings with letters that repeat what you have agreed to.

Whenever you write a letter, make sure you explain your position, your understanding of their position, what you expect to happen and who will do it, and your timeline for a response.

Date and keep copies of your child’s work. Keep copies of homework, tests, drawings, and writing samples.

Before a meeting:

Think about your child: What can she do? What does she contribute to your family, your community, her school? What are your dreams for her when she is in her 20s? What do you want the school to provide?

Write down your ideas and give them to the team. It is your assessment of your child.

Ask your child what he would like to learn next year, what kind of help he thinks he needs. He may be interested in something or have some good ideas.

Ask for copies of all your child’s records, and review them before the IEP meeting. Ask for summaries of assessments before the team meeting. Read them carefully, and make notes of the things you wish to discuss, and of any questions you may have. Any assessments to be discussed must be sent to you five business days before the meeting. If you don’t understand the assessments, ask for explanations in terms you understand.

At an IEP team meeting:

You have a right to invite anyone to attend the IEP team meeting with you. Bring a friend, family member, or another parent for moral support. This person can take notes and discuss the meeting with you.

Invite professionals who know your child, such as an evaluator, psychologist, or therapist. If they can’t come, ask them to contact the team chairperson and send a report.

You are also a professional. Dress appropriately, and look as professional as possible. Stand straight, shake hands firmly, and maintain eye contact as you are introduced to the other participants. If no one begins the introductions, do it yourself. Speak clearly, and maintain eye contact while you are talking.

Sit with the other team members. This shows that you are part of the decision making. If you can, sit between people with power. Try to avoid having your side and their side of the table. It sets up sides rather than focusing on the joint effort.

Arrive promptly. By being on time or a few minutes early, you will demonstrate that you consider this meeting to be important, and that you are ready to conduct business.

Make a note of those present so you can compare the names with the attendance sheet on the individual education plan (IEP).

Be as specific as possible in discussing your child’s needs and abilities. Be positive. Be clear. Make positive statements, such as “I expect. I understand. My child needs.” There is less chance that other people will misunderstand what you say. You will feel more confident, and be more effective.

Stick with the issue at hand — your child’s education. Don’t be sidetracked by irrelevant issues, such as your past experiences or the school’s lack of funds. You are discussing an individualized education to meet your child’s unique needs.

Remain as friendly as possible. Separate the people from the problems. Don’t deal in personalities.

Remember that understanding the other person’s viewpoint is not agreeing with them, but shows that you are paying attention, are interested in what they have to say, and are willing to work with the team.

Feel free to ask questions. Ask for clarification of anything you don’t understand.

Be flexible enough to accept minor revisions, but be firm about the major issues.

It may not be possible to finish all the business at hand in one session, even when things are going smoothly. It’s best to reconvene the team the next day or a few days later to stay fresh, rather than rush to finish.

Feel confident enough to conclude the meeting if the situation looks hopeless. Don’t waste your time. Tell the other team members that you will attend another meeting when they are ready to negotiate in good faith.

In your child’s school:

Maintain close contact with your child’s teacher. Some families have regular meetings, some have a daily notebook, and some have regular telephone calls. Share information and suggestions. Be supportive. Listen to the teacher’s feelings and ideas, and involve him where appropriate.

If you think teachers or other team members are doing a good job, tell them. Thank teachers and other members of the team, including the principal and ITL, when they have done something you appreciate.

You’ve known your child for a long time. If you’ve discovered hints that help your child learn, share them. Offer to help teachers and others adapt materials or programs.

Remember that other people such as the school bus drivers, janitors, lunchroom workers, and secretaries may know and help your child in informal ways.

Get involved in your child’s school. Join the PTA, go to school plays, volunteer in the library. The more people see you, the better you will get to know each other. This sometimes makes it easier to work together for your child.

Go over your child’s IEP every few months. Are the services stipulated in the IEP being provided? Are you satisfied? Is your child happy and successful?

Talk with your child’s teacher or liaison if you have any questions, or if there are any problems.

If the IEP is not working, ask for a meeting of all the people involved. If you feel it is necessary, ask for a meeting to review or change the IEP. You may do this at any time.

If problems arise:

If you feel the school is not following the IEP, speak up. Remember — you are advocating for your child. If you don’t do it, no one will.

First, talk with your child’s teacher or case manager to see if you can work out the problem. Sometimes, a problem is a simple misunderstanding, and can be resolved by asking questions or explaining what you expect. Remember, you are a member of the team. If possible, work cooperatively with other team members to resolve problems.

If this does not work, call and/or write a letter to your case manager, explain the problem, and ask that specific actions be taken to resolve it. Send a copy to the school principal and Instructional Team Leader for Special Education (ITL) at the school. Remember to set your timelines for responses and/or action. Don’t let time run away. Your child is the one losing out.

Call the ITL three days after you mail the letter, and ask what has been or will be done about the problem. Ask that the school establish specific steps toward resolving the problem.

If the case manager or ITL is not able to solve the problem, contact the Department of Special Education. The Family Support and Resource Center can direct you to the Resource Teacher or Instructional Facilitator who oversees your school. They can be reached at 410 313-7161. Ask that quick action be taken to resolve the problem. If necessary, contact the Director of Special Education.

If you cannot reach an agreement with your school system, request mediation from the Department of Education. This is less formal, and not as adversarial, and costly as a hearing.

If all else fails or if the problem is especially serious, request a due process hearing. While an appeals hearing may prove to be costly and time consuming, it does have the advantage of giving you and your child a chance to state your grievances before a qualified and impartial hearing administrative law judge who is required to make a clear-cut decision.

Written by Parents for Parents for the Howard County Autism Society