Tips for an Effective IEP meeting

*Please keep in mind that the advice and information in this article applies to the specific rules and guidelines for the state of Florida.  You can find out more about Florida law at www.wrightslaw.com.  Rules do vary from state to state and in different countries.

Tomorrow is Ben’s yearly IEP review meeting.  Ben received his autism diagnosis almost two years ago, and not long after, his initial IEP was written prior to him entering prekindergarten.  That IEP was revised at the end of PreK at his kindergarten transition meeting.  Now, as his kindergarten year draws to a close, we are getting ready to review the IEP yet again.

I am no stranger to IEPs.  As an educator I have sat in on many IEP meetings throughout the years.  I was responsible for implementing IEP goals as a classroom teacher and I was a member of a team that helped develop those goals for my students’ IEPs.  In recent years, I’m called upon to sit in on IEP meetings from time to time as a content specialist.

I have learned over these past few years that, despite my years of experience in the school system, it feels very different to be sitting on the parent side of the table.  

My journey into the world of parental advocacy has given me newfound empathy for parents navigating the process, especially those who do not have the resources or the background knowledge of how the system works.  We all want what is best for our child but round table meetings filled with school officials can be intimidating, especially when educational terminology and data begins to get thrown around. 

And, so, as I prepare for tomorrow’s meeting, I decided to take a moment to share five tips to setting the foundation for a successful IEP meeting.  I have been fortunate to have positive, collaborative relationships with all of the educators who have worked with Ben, but I believe that this is more than luck. 

Sometimes I hear parents describing how they prepare for their kid's IEP meeting, but it sounds more like a solider preparing to go into battle.  Personally, I believe this is the wrong approach to take.

Instead, I offer you five tips for setting the groundwork for a successful IEP meeting.

1)   Do your homework first

Make sure you come to the IEP meeting prepared.  This starts with understanding how the IEP works. 

An IEP stands for an Individual Education Plan.  It is a legal document that is developed with a team of people (see #3) that defines the goals and accommodations that your child will receive in the coming year.  It is completely individualized (hence the name) and tailored to your child’s specific needs.  It also describes the setting in which your child will be instructed for the majority of the day and any additional services your child may receive.  To learn more about IEPs and how they work, click here.  

Prior to Ben’s meeting, I reviewed his previous IEP and collected data of my own, noting his progress from my perspective.  I wrote goals that I believed would be appropriate for him (You can research goals on the Internet) and provided each member of the team with a list of my recommendations a few weeks prior to the meeting.

Make sure you know your rights.  You are allowed to bring someone with you to the meeting.  This could be a person with additional knowledge of your child, such as a private OT or SLP, or a person with knowledge of the IEP process, such as an educational advocate.  Or, you could simply bring someone as moral support for you, or a person who can take notes for you so that you can focus on the conversations that are happening at the meeting.  I highly encourage you to bring someone with you to the meeting, because you will feel at ease with more familiar faces at the table.

2)   Start positive

Even if you are unhappy with how the school is handling your child’s services, it is never wise to start the meeting with a negative or hostile tone.  Coming to a meeting with “guns blazing” forces people to take sides, draw lines, and put up walls.  There may come a point when you reach an impasse and cannot agree with what the other members of the team propose, and your procedural safeguards (which are your rights as a parent) highlight what to do to pursue due process and mediation, but it is never wise to start down that road prematurely.  You’ll get a lot farther towards getting help for your child if everyone feels that they are working on the situation together rather than having their hand forced.

It’s nice to bring something to share at the table.  A box of donuts or a bag of chocolates is a nice gesture of goodwill.

Start with an appreciation to the school or your child’s teacher.  Share an anecdote of something that your child did recently that highlighted his progress or surprised you in a good way.  Celebrate a milestone, however small. 

And, as the discussions happen during the meeting, remember to view your child through the lens of his or her strengths and with a growth mindset.  Help guide the conversation around how to build on these strengths rather than focusing on weaknesses.  Weaknesses certainly need to be addressed, but never let the team lose sight that at the center of these conversations is your child.  And no one knows your child better than you.

3)   Remember that we are a team…

It is important to not lose sight of the fact that all decisions that are made at an IEP meeting are team decisions.  And, as a member of the IEP team, your input matters.  Here are a few important things to keep in mind in regards to team dynamics.  First, no decisions about your child should ever be made without your knowledge or consent.  The school is required to send you prior written notice before a meeting occurs.  Meetings happen annually to review your child’s IEP (as in the meeting I’m having tomorrow).  As a team member, you also have the right to request a meeting at any time for any reason.  In addition, if the team plans to change your child’s placement (for example- from a regular education classroom to a self-contained environment of all children with disabilities) you would be invited to attend the meetings and take part in the decision process.  Deciding on a child’s placement prior to a meeting such as this is known as predetermination and is illegal. 

Keep in mind, however, that not every member of the team has to agree.  Certain forms that you sign at these meetings have a place to sign to show whether you agree or disagree with the terms set forth in the IEP.  However, because decisions are team decisions, majority rules, though you do ultimately have the right do withdraw your consent if you are truly unhappy with the team decision.  Just know that there are consequences to this choice and make sure you have fully researched the law before doing so.

The other important factor to remember here is the essence of what the word team means.  Webster’s definition of a team is “a group that comes together to achieve a common goal.”  In this case, the common goal is making decisions that are in the best interest of your child.  While some may disagree on the path to get there, this should always be at the forefront of any decisions that are made.  It’s important to strike a balance between listening to what the other members of the team have to say and being an active contributor to the discussion.

Here are some key players who will most likely take part in your IEP meeting.

*Your child’s classroom teacher-

This person should always be in attendance at any meeting regarding your child because they provide the much-needed classroom perspective.  They work with your child in the classroom every day and know his or her academic needs well.  However, they may not know as much about special education rules and policies or specific rules and regulations as others at the table.

*Your child’s SLP (speech/language pathologist)-

If your child is diagnosed with autism, most likely speech and/or language are an issue for him.  Pragmatics (or social) language are usually a weak area for those on the spectrum.  The SLP will have a good working knowledge of the goals that your child is working towards in the small group, therapeutic environment.  Sometimes SLPs push into the classroom and work directly with the child in that setting.  The SLP can provide valuable input about how your child’s behavior looks in a small group (which may be quite different from the classroom perspective) and provide specific support with writing goals and accommodations for the IEP, including social goals.  They may not have as much in-depth working knowledge of the general education curriculum, but they will provide lots of advice for how to accommodate and support the child within the classroom and throughout the day.  They can work with the classroom teacher to develop interventions, such as picture schedules and facilitate social skills opportunities.

*Your child’s OT (occupational therapist)-

Another vital member of the team is the OT.  Children on the spectrum usually have a variety of sensory needs that can and should be addressed through occupational therapy.  A good OT will work with the child through the therapy setting, but will also work side by side with the classroom teacher to design a sensory diet, which are a set of supports to help a child succeed throughout the school day.  30 minutes of OT twice a week in a pullout sensory gym is not nearly enough sensory support for most of our kids.  It’s important to put interventions in place, such as picture schedules, weighted vests, fidget toys, cool down areas, and whatever else your child may need.  The OT can help orchestrate these things.  OTs also work to help develop fine motor goals, which usually impact a child’s writing most in school. 

*The ESE (exceptional student education) resource teacher-

This person may have different titles in different states and countries, but their role is to support the child’s academic goals as written on the IEP.  If your child is in a regular classroom setting, this person usually works with the child during certain times of the day, and either pulls them into a separate classroom or works directly with the child in the classroom for additional support.  This person is usually the case manager for the child’s IEP, so they are your “go-to” person when you have questions or changes that need to be made (or if you want to call a meeting).  If a child is in a full-time classroom with only other children with disabilities (such as an autism unit), this person may be the child’s primary teacher.  This person has a strong working knowledge of how an IEP works, your child’s goals, and special education law.  They plan with the classroom teacher to make accommodations for your child, such pulling your child into a small group to give him extra time on a test. 

*The school psychologist- 

This person is usually shared between several schools.  Her role is to complete evaluations on your child.  Your child will be evaluated prior to the initial IEP being written, and then evaluated every three years (unless you or another team member feel the need for evaluations to happen sooner).  This person can also be called upon to do behavioral or academic observations in the classroom and explain reports or assessments as needed. 

* The school social worker- 

This is another roving position often shared amongst schools.  This person will do a social work assessment (which is a long question and answer session with the parent) prior the child’s IEP being written in many cases.  This person may do home visits at times and provide suggestions and support for parents on how to support the child at home.  They are often the bridge between the home and the school.

The social worker can also do behavioral observations and provide valuable insights into social and emotional goals.   This person sometimes leads small social skills groups at the school as well.  They have a strong working knowledge in the area of behavior.  Schools sometimes have another team member called the behavior specialist who also specializes in behavior.

*The ESE specialist- 

There are times when the ESE specialist may be invited to attend your child’s meeting.  These roles look different in different places, but in our county this is a district person assigned to a certain set of schools and they oversee decisions that are made at a school and district level.  If you are requesting a major change to the IEP that may be a bit unorthodox or will potentially cost the district money (such as a request for a one on one aide), the ESE specialist will most likely be invited to attend the meeting.  You could request that this person attend your child’s meeting if you feel you need the perspective of a district person but their busy schedules may not always allow them to attend.

*The school administration- 

The principal and assistant principal usually do not attend IEP meetings, but they can also certainly be invited to attend.  If you are requesting accommodations or services that will ultimately cause changes at the school level, then you may want to request that the principal attend the meeting.  The principal provides a school-wide perspective and has knowledge of the school budget and how the master schedules are designed. 

*Other Team Members- Other members who may be present at the IEP team include (but are not limited to) instructional coaches at the school (which is the role that I play at my school) who offer curriculum expertise, ESOL teachers (for students who speak a language other than English.  These teachers can offer translation to parents), the school guidance counselor, and the list goes on an on.

As you can see, the table can quickly fill with lots of people!  The good news is that each person brings his or her own unique perspective and area of expertise.  The key is to get to know each “player” on the team on an individual level if possible.  Reach out to them prior to the meeting.  Find out their area of strengths and seek their support when necessary.  Don’t be afraid to ask for what you need, whether it is a behavioral observation on your child or an explanation of a psychological report. 

If you feel that the meeting is moving too fast and you are getting confused, ask for clarification or for something to be repeated.  Most people are more than happy to help in any way they can.  We educators get used to speaking our own language of alphabet soup and sometimes need to be reminded that others don’t always understand what we mean.  Don’t’ be afraid to ask!

4)   …and be an active member of the team

Come prepared to the meeting.  As I mentioned previously, do your homework before coming.  Remember, others at the table may be able to speak to the curriculum and the technical parts of the IEP, but you know your child best.  No one else has the unique perspective that you bring, and that should be valued in all conversations. 

If you feel in your gut that a decision that is being proposed is wrong for your child, don’t be afraid to respectfully speak up and ask probing questions.  You also don’t have to feel pressured to sign anything at the meeting.  You can always take time to think about something and sign later.  Also, don’t be afraid to ask for data.  All IEP goals should be measurable, and the team should have charts and graphs to share with you.  If not, ask to see them.  Ask how your child performed on recent assessments.  Ask the team to quantify how your child is progressing towards the goals. And if your child is having difficulty with his or her behaviors in school, ask them to be specific about their concerns.  What exactly do these behaviors look like?  When and where do they occur?  With what frequency?  And what interventions are being put into place to address these behaviors?  The more questions you ask, the clearer picture everyone at the table will have about what is happening and what needs to happen.  Just make sure that your questions are worded in a respectful, not accusatory manner. 

5)   Learn the art of respectful advocacy

There will be times when you may feel that your child needs services and supports that he or she is not currently be receiving.  In these cases, it’s important to be ready to be an advocate for your child.  In my experience I have found that the educators who I’ve worked with have the child’s best interest at heart, but district and school policies will usually only allow them to advocate to a certain extent. 

As a parent, it is your job to advocate for your child. 

You cannot leave this to others to do alone, though certainly you can seek the support of members of the team in your pursuit of your child’s needs. 

When you are advocating for a service or support, first make sure that you understand the law.  Know what is within your child’s rights and what you can legally request.  Be prepared to speak, or even quote the law if necessary.  Be ready to bring an advocate to the meeting to speak to these things for you. 

At times you might even want to pay to have an independent evaluation of your child so that you have additional data as support.  I always bring my own data to the meetings so that I can share specifics to support the points that I want to make. 

Above all, seek to negotiate with the members of the team rather than bully them into giving your child what you believe that they deserve. If you find that your child is in a truly toxic environment, surrounded by people who just don’t “get it”, then you need to question whether this school is right for your child to begin with.   

I think it’s important to note that we also need to teach our children to become self-advocates.  When a child reaches high school age, they should begin to attend their own IEP meetings and be part of the process of setting the goals, but I plan to involve Ben long before this.   Ultimately we want to help our child to become independent, confident, and capable adults, and this includes teaching them to become their own advocate.

Some people say that I am lucky to have such a strong, supportive team surrounding my son, but I would argue that luck has nothing to do with it. 

These things are carefully built over time.

I did my research and looked long and hard before placing Ben at the school where he currently attends. 

I work to build relationships with the people at the school who care for my son every day.

I stay in communication with these team members and we discuss his progress regularly.

Luck has no part in building a strong team.

But a little chocolate never hurts.  J

Day 9: Acceptance is Advocacy

I love this picture of Ben doing the zip line at a birthday party.  It's a great example of what can be achieved with a little bit of support.

At first glance, the words acceptance and advocacy seem to have opposite meanings.

In fact, the words are more like two sides of the same coin. 

I accept that Ben’s autism is a part of who he is.  I don’t believe that I can remove the autism without also removing the essence of who he is. 

I advocate for services and supports to help Ben to be successful, confident, and independent. 

I accept Ben’s differences, his quirks, and his unique view of the world.

I advocate for training opportunities that will allow teachers, his classmates, and other adults in the community to understand and celebrate these differences and to recognize the many ways that we are all the same.

I accept that Ben will learn at his own pace and in different ways from other children.

I advocate for supports in his IEP that will allow him to demonstrate his learning at his pace and in the ways that meet his needs. 

When Ben was first diagnosed with autism, I will never forget what one of the evaluators said to me.

She told me that I am in a unique position to be an advocate, not just for my son, but for many, many children who are like him.

I never would used the word advocate to describe myself.

I am by nature a quiet person.

I was the type of child growing up who hated confrontation.  I found it easier to agree with others rather than voice my own opinion.  I often swallowed my own point of view rather than cause any potential conflict.

I thought I was being polite when I kept quiet, but I know understand that, really, I was actually being compliant.

I’ll say it again.  We think we are being polite when we agree with a differing point of view but we are actually being compliant.

Our silence is actually our tacit agreement.

Compliance does not bring change.

I was never taught the fine art of advocacy in school.

I have grown into my role as an advocate over time.

Luckily I’ve had plenty of practice advocating for other people’s children as a teacher long before I needed to become an advocate for my own son.

Here are some things that I believe about advocacy-

I believe that advocacy does not need to be adversarial.

I believe in a team approach where every voice is heard.

I also believe that I can listen but also respectfully disagree.

I believe that healthy teams bring up varying viewpoints that lead to positive change.

I believe that almost all adults want what’s best for the child and are doing the best they can given their level of understanding and the parameters that they must work within. 

I also believe that just because something has been done a certain way for years doesn’t make it the right way.

I believe in thinking outside the box in order to find solutions that are best for kids, not simply convenient for the grown ups.

I believe in asking the tough questions when necessary. 

I believe in the power of good data.

I believe in researching the law and understanding my child’s legal rights in order to ensure that accommodations are being implemented fairly and with fidelity.

I believe in being an active member of my son’s IEP team. 

I believe in calling meetings when necessary to make plans or to make sure everyone is on the same page.

I believe in being the voice for my child until the time when he can become an advocate for himself.

I believe in the power of listening and truly hearing what others have to say.

I believe in taking my time before making any decision that will impact my child.

Beyond advocating for Ben, I also believe in advocating for the needs of all children and autistic adults.  So much needs to change.

It is not okay that children are being forced by their “friends” to eat sticks and twigs.

It is not okay that children are being subjected to inhumane “cures” such as bleach treatments.

It is not okay that children are being locked up in cages.

It is not okay that children are being thrown off bridges to their deaths by their parents.

It is not okay that adults are treated as “less than” or invisible or made to feel as if their very presence in this world is a burden, especially by organizations that should be helping them.

So much still needs to change.

I accept the person who my son is.

I advocate for his rights and the rights of others.

I hope you will join me.

Together we can do more than I can do on my own.

It’s not just about my children.

It’s about all of our children.

It’s about changing our world.

It begins by having the courage to speak for what is right.

I pray that you will find your voice and inner advocate.

Have courage.

Be brave.

Why I Will Not Speak for #Autism Speaks

           

Ben is gently brushing his new bunny that he made at a recent trip to Build a Bear.  Build a Bear is one of the companies who have withdrawn their support of Autism Speaks.

             Recently a colleague of mine approached me about an opportunity that she had heard about.  She explained that there was an autism group getting ready to do an awareness walk, and they were looking for input from educators who were also parents with children on the spectrum.  My initial reaction was excitement, but then I paused and added, “I’d love to participate in this, but if the organization is Autism Speaks, I’m going to have to pass.”  She wasn’t sure of the name of the organization, so she said she’d find out more and get back to me.
             I know it must seem strange to those who are new to our autism community to think that I would dismiss a charitable organization devoted to the field of autism, so I thought it’s probably time that I post here about why I cannot support Autism Speaks.

            If you know me in the real world, you know that I’m a pretty even-keel person.  I am a moderator, a person who seeks multiple perspectives before making a decision, and I rarely dismiss any point of view.  I try to be thoughtful and reflective.  As my mother would say, “I seek the balance in life.”  But, on this matter, I feel I have to take a stand, and I’ll explain why.

            Autism Speaks is by far the largest charitable organization out there right now in the autism community.  Celebrities endorse it.  Companies sponsor it.  (Luckily Build a Bear recently withdrew their support!) Their annual walks attract millions of participants, many marching with T shirts that have puzzle piece signs (their signature logo). Places all over the world such as the White House and the Empire State Building turned on blue lights in April as part of their “light it up blue” campaign that sought to raise autism awareness. 

            Autism Speaks is so mainstream that their ideas are often the first ones that families who are new to the world of autism read about.  A quick Google search about autism will lead you directly to their site. 

            Please understand- I fully support autism acceptance.  Autism Speaks supports raising autism awareness.  This may seem like a small difference in terms, but, trust me, it is not.  Sadly, the approach that Autism Speaks uses to raise awareness has caused the autism community to become more polarized rather than bringing us together and valuing differences.

            On the website for Autism Speaks, you’ll find this description of the organization.  “Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we've been able to accomplish and look forward to continued successes in the years ahead.”

            So why am I against this organization that has such strong support across the country?  Others have written on this topic before, much more eloquently than me.  You can read some of these posts here and here.  

            When I first started learning about autism after my son’s diagnosis, I read many books and watched countless videos on the subject.  It quickly became clear that our community is a community divided.  Autism is a spectrum and autistic individuals have characteristics that range from completely nonverbal and requiring extensive support to meet their basic needs all that way to completely verbal and fully capable of independent functioning, but requiring extra support in the areas of communication, sensory processing, and/or emotional regulation.  Each individual is unique, much like a snowflake.  No other exceptionality has so much variance within it.  My son falls on the more verbal, independently functioning side of the spectrum.  I cannot speak for the experiences of others whose needs differ from those of my son’s. I certainly do not seek to minimize the challenges that come with meeting the daily demands of caring for a child who needs this round the clock support.  These children grow up to become adults who may continue to require this same level of care, and certainly services need to be in place to support these individuals.   

            But (and this is a very big BUT), even those individuals on the most, for lack of the better word, severe end of the spectrum require the same level of dignity and support as does my son.  Just because a person cannot talk does not mean that he has nothing to say.

            And while I cannot speak for the experiences of others, I also cannot speak to my son’s experiences.  Only he can truly explain what it is like to be Ben.  I am not autistic.  I simply live with a person who is.  Autism Speaks, as it says in their name, speaks with a great deal of authority for those on the autism spectrum every single day.  However, Autism Speaks is speaking on the behalf of autistic individuals without ever consulting them first.  I’m going to make a broad comparison here. This would be a little like me speaking for a men’s group (Let’s call the group Men Speak) because I live with my husband and therefore know all there is to know about men.  You can see the absurdity in that.  I’m a parent of an autistic child.  I care for Ben every day and I know him very, very well, but I’ll never truly know what it feels like to be Ben.  This is why Autism Speaks absolutely should have autistic adults as part of their counsel.  They did have one person, John Elder Robison (author of the book "Look Me in the Eye"), but he resigned for reasons that you can read about here.

            If Autism Speaks did bother to ask autistic adults how they feel about the organization’s message, I don’t think they would like what they have to say.  If you were to ask an autistic adult how Autism Speaks makes them feel, they would most likely tell you that hearing things like autism is a tragedy and they are a burden to society makes them feel like they are worthless too.  Words can be very, very damaging, and for those who often think on a very literal level, this has the power to be absolutely devastating. 

             Autism Speaks views autism as a tragedy.  They have said so in their marketing campaigns.  One very famous commercial published by Autism Speaks called “I am Autism” makes autism out to be the bad guy stealing away our children from us.  It was actually produced by the same person who directed third Harry Potter Movie.  In the film you hear a deep, ominous voice narrating, saying things like  “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”  Autism Speaks uses fear tactics and inflammatory words because they believe that they need to scare the community at large into supporting the cause.  They use terms such as “autism epidemic” and “devastating” to garner support.

            Autism Speaks believes that autism is a disease that needs a cure.  They spend the overwhelming majority of the millions of dollars that they receive on researching to find a cure for autism.  Only 4% of their budget goes to “family services” to support the autistic children, and especially adults, already in the community.  And this is a huge problem because, as I mentioned before, a growing number of children are becoming adults who will require community supports such as housing, care, and job-related training and skills as needed. 

             We have to watch what we say around our children.  The former vice-president of Autism Speaks said on a PR video “Autism Every Day” that she has contemplated driving her car off the bridge with her daughter in it because of the challenges that her daughter brings.  She said this with her daughter in the room.

            Suzanne Wright, on of the founders of Autism Speaks, recently spoke at the Vatican and, in her speech, compared autistic individuals to lepers and “the least of us”.  Jess from “A Diary of a Mom” writes about this particular speech here.

            Can you see how I would not want my son hearing any of this?  My handsome, amazing little guy is not a burden, nor a leper, nor a tragedy.  He does not need to be cured as he is not sick.  If he had cancer, I’d be looking for a cure, but his brain is simply wired differently than mine, which causes his approach to the world to be different than many are accustomed.  This does not make him “the least of us.”  If anything, I’d argue that he is “the best of us.”

            Suzanne Wright would tell me that her organization is not talking about my son when they speak of the tragic epidemic (though she would conveniently use his diagnosis in her calculations of the numbers of those on the spectrum).  She would tell me that the tragedy and the devastation are referring to those on the more severe end of the spectrum, those who require constant care, those who are nonverbal or extremely aggressive or completely unresponsive to others and lost in their own world.  To which I would say this- don’t those children deserve the same level of respect as my son does?  Those children are also not a tragedy.  They are precious children.  And, whether they show it or not, they are also listening to what we are saying about them.  As they are becoming adults, they are speaking up and we are realizing that they heard and internalized so much more than we ever could have imagined when they were children.  They don’t deserved to be driven (or thrown) off a bridge.  They need support.  Their parents need support.  When they become adults they may continue to need supports.  But, sadly, most of the conversation (and finances) are not centered around creating opportunities and services for those on the spectrum.  This is what scares me most.  We’re so busy trying to find a cure and scaring everyone that we’re not spending time nor nearly enough funds towards finding solutions to the very real needs that are here now.

            So that, my friends, is why I cannot and do not support Autism Speaks.  There are many, many more examples, sadly, of the damage that this organization has done and continues to do.  I know that they do good as well.  They do offer scholarships in communities and job opportunities.  But I cannot associate with an organization that looks at my son, and those like him, as lepers and tragedies.  If you choose to support Autism Speaks, I respect your decision, but I wanted you to be informed as to why I cannot support them.   
            
             If you are looking for an organization to support, I would recommend  The Autistic Self Advocacy Network.  They are run by autistic people, for autistic people and their families.