Help! IEP Time!

23 Mar

Yes, it’s that time of year again – Time for the annual review of my son’s Individualized Education Plan (IEP).  Even though this is only a review of our existing plan, and things have been going really well for my son this year, I still feel nervous and concerned.  Let’s face it, the entire process is extremely intimidating and nerve-wracking to a parent.  Without fail, I don’t sleep the night before, I can’t eat anything that morning and during the meeting – I cry…  Yep, no matter if what is said about Gregory is positive or negative….I cry.  (Trust me – crying when receiving good news is even more mortifying than crying when receiving bad news….  ;-\)  I can’t help it; so much of myself (my efforts, my concerns, my dreams, my love, etc.) is wrapped up in my children, the emotion and the nerves just get too much for me to contain.  Well, that and the fact that I’m a total sap…

Anyway, in the hope of helping other parents in a similar position (criers or not!), I am dedicating this series of blog posts to ways to make the most of your child’s IEP process.  I’ve received a number of comments and questions on my blog regarding IEPs, so I know I am not alone in my feelings.

A good IEP is a vitally important support for your child’s future, but the entire process is confusing, fraught with emotion, and bounded by fears that even though your child is counting on you, you might not be up to the task. With so much riding on it, no wonder parents feel so daunted, anxious and overwhelmed!  Maybe a few of these suggestions will help.

Be forewarned – this is going to be a long post.  This is an important topic with a lot of ground to cover….  So as not to overwhelmed you, I’ve broken the subject into several posts.  This first post in the series focuses on the up-front legwork needed to help the IEP process go more smoothly.  So, grab a cup of coffee, take the phone off the hook and settle in…

Does Your Child Need an IEP?

You know that your child is struggling and needs help….The very first thing you must do is determine whether or not your child needs services from the school’s Special Services, or if other paths might be a better approach.  Here are a few questions to ask yourself objectively:

1.  Must your child’s needs be met during school (i.e. academic support, resource room, etc.) or might they be better met in another setting, such as tutoring at home, physical therapist (PT) at the clinician’s office or social skills in a group setting? (Finances, of course, play into this equation, since many times medical insurance doesn’t [fully] cover these types of services…)

2.  So, you’ve identified that your child needs help during school.  Now, can these needs be met within General Education, instead of Special Education?

  • My advice would be to try more direct methods first, by working directly with the General Education teacher and Guidance Councilor.  Together, you may be able to provide additional supports, behavior modifications, etc. within the general education classroom that would not require that your child to be officially ‘classified’ within the Special Education department.  For example, teachers will frequently spend extra time with a child who needs extra help.  Small group instruction (pull-out/resource room) may also be available for specific subjects.
  • The school may decide that a formal Intervention and Referral Services (INRS) team meeting is required to discuss your child’s needs and possible interventions.  This can be a good thing, as it formalizes your child’s issues and any agreed upon interventions.

3. You’ve identified that your child needs help during school, but the unofficial assistance or INRS interventions are not sufficient. Is your child eligible for Special Services? To determine this, you must formally request (in writing) that your child be evaluated by the Child Study Team (CST) of your school or district.  The CST is made of up two or more certified personnel, including the school psychologist, learning disabilities teacher and social worker.  This evaluation will assess your child functionally, academically, behaviorally and psychologically to determine where any issues or deficits exist.  The evaluation will be based on standardized testing, observations, interviews and a review of developmental and educational history.

  • A specific diagnosis of your child’s problem(s) by an outside doctor or professional may be helpful, but it is not necessary.  The IEP eligibility determination is based on academic performance and behavioral issues at school, with or without a formal diagnosis.
  • In any case, don’t wait to obtain a diagnosis report from your doctor before requesting the CST evaluation.  The process takes several months to complete and the school is not required to accept an outside diagnosis or recommendation.  The school may in fact, decide to hire its own doctor to conduct an assessment during the evaluation process.

Special Note:  If your child’s teacher or Guidance Councilor is the one who raises concerns and recommends an evaluation, be open to hearing a difficult ‘truth’.  It may be a shock to you, or you may already have had concerns of your own, but it still can be hard to acknowledge that your child is struggling.  It won’t help your child for you to deny that their difficulties exist, so stay focused on your child’s best interest.  Keep in mind that teachers see many children over the years, so they can be more objective about identifying when problems exist.  They also see your child in a different setting and circumstances that you do.  It doesn’t mean the teachers/councilors are always correct, but it is at least worth listening to their concerns and perspectives.

On the plus side, if the school suggests the evaluation, you are much less likely to have a battle on your hands to get the help that your child needs.  And rest assured, no evaluation may be conducted on your child without your written permission.


So….you’ve decided to pursue an evaluation by the CST.  Now it is time to do your homework!  To make the most of the IEP process, it is vital that you do adequate preparation.  You are the expert on your child and must stand as his staunchest advocate.  So, be sure to cover these following steps for the best outcome for your child.

1. Understand your Child

Take time to really understand your child’s strengths, weaknesses, personality traits and interests. Be specific about your goals and desired outcomes.  It is not enough that your want your child to be ‘happy’ or to ‘reach his full potential’.  You need to have concrete goals, such as ‘read at grade level’, ‘ interact appropriately with peers’, etc.  A great tool to help parents with this soul-searching step is Hopes and Dreams – An IEP Guide for Parents of Children with Autism Spectrum Disorders, by Kirby Lentz, Ed.D.

2. Educate Yourself

To adequately prepare yourself for the challenges ahead, you need to do your research and educate yourself as much as possible:

  • Talk to others.  Many parents and professionals have been through the experience with Special Education and the IEP process before you.  Glean as much information and perspective as you can from those who have already gone through it.  And don’t limit yourself to just parents in your district.  Parents from other towns and even other states can provide valuable insights, as well as potential alternative approaches/services.
  • Go Off-the-Record. If at all possible, talk to your child’s teachers and administrators privately.  In so doing however, keep in mind that these individuals have a necessary allegiance to their employer (the school district) and may not be in a position to make official suggestions or recommendations.  Respect this and try to elicit open, honest dialogue by speaking off-the-record.  You can gain valuable insights into your child, available services and the system in general, from someone ‘on the inside’.  Be sure however, to always honor the ‘off the record’ status and never quote or reference those private discussions (or you’ve just burned that bridge for the future – yours and any parent following you…)
  • Attend Seminars. Many Special Education parent advocacy groups (such as the Statewide Parents Advocacy Network (SPAN) in NJ) offer free IEP seminars to parents.  Autism support organizations frequently offer seminars and conferences throughout the year – on all sorts of related topics – so be sure to get on their mailing lists.

3. Plan Your Strategy

Ok, now that you have fully educated yourself about your child, your rights, the process and the available therapies, it is time to strategize.

  • Be Realistic and Flexible in your Demands.  Yes, you want the world for your child, but be realistic about how much your child can reasonably handle at one time.
    • Focus on your top priorities at this point in time.  Priorities shift over time, as your child develops and his/her needs and issues change – and so can the IEP….it is not carved in stone, and may be modified at any time.  Identify a list of ‘ nice to have’ services.  These are not your top priorities, but if you school is willing to provide them, then great.  If not, you at least have a bargaining chip.
    • By understanding what services are in place and readily available within your district, you may be able to work within the system to meet your goals…maybe not all, but most.  Just because you heard about a great new treatment option that you are convinced will benefit your child, doesn’t mean that your school district will – or even can – provide it to your child.  The school is limited to a set of standard, proven and approved therapies (i.e. ABA Therapy).  You may need to work very hard to get a new therapy/approach onto this ‘approved’ list of services.
    • Be open to supplementing with services, therapies and/or supports outside of school – and to trying new approaches.  It may not be exactly or everything you were hoping for, but every little bit helps.
  • Walk in Their Shoes. When negotiating anything, it is vital to understand the other side’s position, goals and constraints, so that you have a better chance of developing a win/win result.  In this case, understand that the school district has a different set of priorities and goals than you do.
    • Special Services is tasked with providing an ‘equal’ and ‘adequate’ education to your child and they are held to budgetary and administrative constraints dictated by the government, Board of Education and other bodies.  Schools do not have unlimited resources (manpower or funds), so they need to apply those resources judiciously to provide the most benefit to the most children.  (And as taxpayers, we want them to spend our tax dollars wisely, don’t we????)
    • Acknowledge that unlike you as the parent, the school is not looking (nor is obligated) to provide the ‘best’ education for your child.  You are concerned with helping your child be the best that he/she can be, but the school’s primary concern is that your child is educated to the established standards.
  • Seek Support.  If you suspect that there may be some question about your child’s eligibility for Special Education, or if you are just not confident tackling the process on your own, consider speaking with and perhaps hiring an advocate.  Some districts/states automatically provide parents with an experienced parent advocate to facilitate the process, which can be an invaluable resource.

Initiating an IEP and dealing with Special Services can be overwhelming, emotional and intimidating, however with the appropriate preparation and planning, you can make the most of the process for your child. You can better understand your child’s challenges and work together with the school’s ‘team’ to meet your child’s needs most effectively – and that’s what I call a win/win!

Stay tuned for Part II of Making the Most of your IEP….

26 Responses to “Help! IEP Time!”

  1. Art S March 23, 2011 at 1:52 pm #

    A lot to read, but great post, Joanne. Once it has been determined that a child will require special services, the IEP is key. Be sure to take good notes during all of your meetings and make sure that everything they agree to provide is included and clearly spelled out in the document. For example, if your child needs OT, it’s not enough to say “OT will be provided”. It should say “OT will be provided 2x weekly for 45 min per session”.

    Be wary of the classification. My child was initially classified as “emotionally disturbed”. Within the special ed community, this classification is very broad and does not have the negative connotation attributed to it in the media. Although your child’s records are supposed to be confidential, we feared that this information could leak at some future time. We insisted that the district change the classification to OHI (Other Health Impaired). The classification doesn’t necessarily dictate what services will be provided.

    As Joanne noted, the district has a different set of priorities and goals. The best way to get what your child needs is to remember that you and the child study group are a team. Being demanding will pit them against you. Enter into the discussions with an open mind and be willing to compromise. Be prepared and know the difference between the “must haves” and the “nice to haves”. If you are pleasant and make it clear that you want to work with the district, you will get what you want more often than not.

    • Joanne Houldsworth March 23, 2011 at 4:13 pm #

      Thanks for the great tips, Art! I definitely concur…

      • MrsB May 12, 2011 at 10:13 pm #

        Thank you for your part 1 of IEP’s. I too am VERY emotional about my son and our struggles, unfortunately I feel this is a detriment as some of the focus gets put on me “the crazy parent” and in one instance the principal seemed pleased to see me cry. They had reputation of blaming the parents for “discipline problems”, he is not and we survived. To date my son has slipped through the cracks, consequently the best we’ve managed is a 504; it has not been productive. Currently we are having yet another evaluation while I feel that we are about to crash and burn. I am exhausted!I regularly remind myself this too shall pass… On the brighter side of things, he is a wonderful young man and is very loved.We parents have to continually work on calm communication with ourselves and the school authorities. “Art” is right about using appropriate language. Thank you again for your insights.

      • Joanne Houldsworth May 20, 2011 at 9:28 am #

        Thanks for your comment, Mrs. B. It seems like you have the right attitude, appreciating your son for who he is and advocating for his interests…. The over-whelming emotion can be a problem, I agree. I don’t know what else to do about it though, other than be as prepared as possible when you need to ‘tackle the dragon’! Good luck to you and your son.

  2. Tracy B. March 23, 2011 at 3:38 pm #

    Joanne – I am not a crier and you got me at…

    “so much of myself (my efforts, my concerns, my dreams, my love, etc.) is wrapped up in my children”

    Nicely said.

  3. Stephan H. Hensler April 5, 2011 at 2:16 pm #

    Very interesting and deserving of further thought at least.

  4. Robert Hickman April 22, 2011 at 3:12 pm #

    As an adult autistic myself, looking back at my childhood reviles how incredibly poorly suited the education system is for teaching those on the spectrum. For me, my school years can basically be described as year after year of daily, violent meltdowns. The instant I got out of school, these stopped dead, and I have not experienced a single one in the years since.

    The meltdowns were a side effect of the forceful nature of school. Being forced to copy out page after page of text, leaving my hand in constant agony. Being shifted between utterly unrelated subjects every hour meant I could not focus at all.

    For all intents and purposes, I learned nothing at all in school, it served to do little more than waste a large portion of the day. My learning was done at the weekends and in evenings, reading books, making things and generally practicing my art. Then when I got on-line in my later childhood, I just started downloading the net into my head, quickly teaching myself how to program, which lead to my current job.

    Honestly, I wish that I never had to waste that time in school, I wish that I was unschooled. Today, I even consider myself to be an unschooler, who happened to waste a large portion of the day, generally doing nothing, stuck in school.

    Let your sun choose his own education path, even if that path is wildly divergent from ‘normality’.

    • TNK April 9, 2012 at 4:12 pm #

      Such a great post!!! My son was homeschooled after having meltdowns daily at school. Purely out of frustration beause the teachers didn’t make sense to him, he couldn’t deal with sensory problems, etc. Today he is back in school, but a very small charter school that utilizes direct instruction methods (widely used in special education programs). He is doing OK, although he struggles with language arts and math (getting D’s in both). I am OK with him getting D’s in his classes because I know he gets almost no support from his teachers . Plus the school is academically advanced, so his 7th grade work is actually 8th grade work. His teachers constantly say this to me: he is so smart, if he would just apply himself. I just want to smack them when they say things like this. He is dealing with more things that appear on the surface. His muscle tone is low, his doctor said he has absoluetly no strength in his body. So sitting at desks all day long is hard to do, so he slouches. His teachers see this as a sign of him being lazy. His band teacher yells at him because he doesn’t sit up while playing his instrument. He struggles greatly with the educational FLUFF that is required of him to put in his work. To him things are black and white. Asked the question in math, “does moving these 4 numbers to the other side of the plot change the median. Explain.” His answer, YES. The distribution has changed. Marked wrong because they wanted this long drawn out 8-12 sentence response. Ridiculous.

      • Joanne Houldsworth April 9, 2012 at 9:46 pm #

        I feel your frustration TNK! I know it can be so difficult working with teachers that just don’t ‘get it’, but keep striving. You are your son’s best advocate – keep up the good work! Best wishes, Joanne

  5. Janet June 6, 2011 at 11:59 am #

    Wonderful post, so glad that I found your blog. We live in NJ too. My 8 year old was just diagnosed with Aspergers last week and now I am wading through the proposed IEP, trying to decide what else to request. Can’t wait to read Part 2 of your IEP post !!! Does anyone have any specific tips for IEP goals are related to unstructured time – my daughter finds lunch and recess to be particularly challenging.

    • Joanne Houldsworth June 6, 2011 at 1:35 pm #

      Hi Janet and welcome to the blog! Here are some IEP goals, specific to unstructured time, for you to consider: Attend appropriately to table conversation during lunch, initiate a conversation/interaction, initiate a play activity, join in interaction when invited by peer, join in play when invited by peer, respond/react appropriately when request is declined (ie other child doesn’t want to play), decline invitation (to play) appropriately when invited by peer, demonstrate apporpriate concern/interest for peer (i.e. if peer is happy, or hurt). Just a few suggestions… Then of course, there all the general social skills and hidden curriculum items that can be incorporated throughout the day. Good luck!

  6. Shalla December 8, 2011 at 1:04 pm #

    I just found your blog, and I have noticed it’s been a while since you have posted, but I thought I’d comment anyway.

    My girl is 8 years old and has such a hard time at school and with making friends. My mother would always say I spoil her with too much love and affection and my husband would say she’d grow out of it but since preschool it has been a struggle for her.

    This year in Grade 3 the new principal asked me if Cat had been seen ADHD, which I promptly replied that she was focusing at home for hours at a time so no I didn’t concur. After a letter was sent from the school to her doctor and a couple of interviews with guidance and Dr. Connors the suspicion of ASD with her falling into the Asperger’s range was gently suggested.

    We are still in the diagnostic stages but my guts are screaming that AS fits and is what is at the heart of Cat’s unhappiness and quirks.

    I watched your son’s interview and saw so much of my little one’s movements and sweetness. She is awesome too. Thank you for sharing. I don’t feel quite as alone.

    I hope that the process will be completed soon and that with concrete evidence I can start making head way. I know her teacher and school are taking us very seriously. We haven’t finished the diagnostics but there are supports coming into the classroom already.

    Again thank you for your bravery by coming onto the www with your son and family. I hope that you are always respected out here in the webs because opening up yourself and your experiences is not a easy task.

    Sincerly yours,


    PS: Greg you did an awesome job on your interview – way to go big guy!

    • Janet December 8, 2011 at 1:42 pm #

      Great post! Thanks for writing it. We are ALSO in NJ and I ALSO have an 8 year old, 3rd grade daughter, diagnosed with Aspergers last spring. Our school does a great job addressing academic learning disabilities, but could do more with social and gross motor challenges. My daughter really suffers during lunch and recess. We are trying to figure out how to get the school to take this more seriously and address. Has anyone had any luck with this? What sorts of programs do other school districts run to address social skills and fitness? Do any schools run “ambassador” or “buddy” programs? We have a weekly “Circle of Friends” and “Social Skills” – these are great but don’t seem to carry outside of the sessions. Thanks !!!

      • Joanne Houldsworth December 9, 2011 at 8:29 am #

        Janet – Our school district doesn’t address the specific fitness needs of AS at all. We do have social skills groups and ‘lunch bunch’ groups, but that is pretty much it. I took Gregory to a specialized AS Social Skills program outside of school, as well as a special gymnastics program. But, I agree with you – kids may do great in group, but the skills don’t seem to be carried over their day-to-day lifes. Eventually though, the little bits do add up and improvements are seen in other environments as well. Good luck on your journey! Joanne

      • Janet December 9, 2011 at 9:39 am #

        Are most lunch bunch groups daily or weekly?

      • Joanne Houldsworth December 9, 2011 at 11:51 am #

        Based on my experience, most are held weekly. Either moderated/guided by the school guidance councilor or an outside therapist brought in to the school to develop the program. The composition of the group is key, and ideally should include neurotypical children.

    • Joanne Houldsworth December 8, 2011 at 2:04 pm #

      Thanks very much for your comment, Shaila. I am glad you found the posts helpful and wish you sucess with your daughter. With your loving guidance, she’ll do fine, I’m sure!


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