Editor’s note: This is a guest post by Tonia Christle from Tonia Says on IEPs (Individualized Education Plan). I asked her to write about IEPs from the perspective of an adult with a disability who grew up having IEPs.

Image is black and white with a boy's profle screaming into a microphone

Imagine that you have just started your first job.  You’ve been there a month, and now it is time for your performance review.  It’s not the best fit job-wise.  You are expected to type more than 200 words a minute, with no mistakes.  You are expected to be fluent in a language you have heard spoken, but do not understand and cannot speak yourself.  You really need the money, though, so you cope.  You make it work.  You imagine the review will be unpleasant but as you have never had one before, you really have no idea what to expect.

You arrive in the room for your review, only to discover it’s not just your boss who is going to review you, it’s also her boss, and the boss of that other department who hates you.  All the bosses in your entire company are there…and also your parents…because their input matters, too.

They are all Team Members and you are the Learner.

It is the worst performance review ever:

  • You don’t ask for help (because you have been raised to be self-sufficient.)
  • You accept help you don’t need to save time.
  • You take too long moving between tasks, even though you are moving as fast as you can.
  • You start tasks too early.
  • You need prompting through unfamiliar processes and into chaotic team building activities that feel delicate at best, and unsafe, at worst.

All these department heads have been watching you while you were unaware.  They have been evaluating you.  They have been timing you in tasks you didn’t realize had a time limit.

They ask for your feedback:  This is a good goal for you, don’t you think?  To refuse help you don’t need based on your boss’s judgement, not your own?

You nod, because these are all your superiors, and you have no real power here.

You leave demoralized, knowing you will have to come back again and again (twice a year for nearly a decade.)

You are nine years old.

As an adult, the job performance review metaphor is the closest example I have to convey just how uncomfortable being present at my own IEP meetings was as a child.  While I definitely agree with my mom that it was important that I was involved in my own education, I have some additional suggestions for parents to think about before including your child or children for the bulk of their IEP meetings.

CONSIDER YOUR CHILD’S AGE:

I’ve read many accounts of parents of kids with disabilities about just how difficult IEP season is.  It’s a time when you are face to face with all of the ways your child is behind other children their age, all the ways they need help, or maybe all the things that are not in place yet for your child that should be. If it is that difficult for you, please consider the impact it may have on your nine-year-old, your ten-year-old, or even, your thirteen-year-old.  Know that we are already, always, painfully aware of the areas in which we fall short.  To sit in on a meeting dedicated to pointing out those things is unnecessary, at best, until we are mature enough to understand that the meeting is for our benefit.

Mary Evelyn Smith, who blogs at What Do You Do, Dear? suggests waiting until waiting until your child is in high school to be present at their IEP meetings (and depending on the child, perhaps, even that is too early.)  I tend to agree with her.

By the time I was in high school, IEP meetings were far less difficult for me, and I had a better grasp of what they were and that I was not in trouble, for the duration.

ALTERNATIVE WAYS TO INCLUDE A CHILD:

That being said, I absolutely agree with my mom that my involvement and presence at IEP meetings was necessary.  Here are some alternative ways to include your younger child, prior to (or instead of) actually being present at their own meeting:

Have your child present for a few minutes for a brief (positive) overview of their progress:

Jess Wilson, who blogs at a diary of a mom, once detailed how her thirteen-year-old daughter was present for just a few minutes at the start of every IEP meeting.  During this time, her daughter was able to hear positive remarks from her teachers and others involved in her education.  She was not only able to see all the members of her “team” but know that she herself was an integral member of that team.

I think this is a great idea and something that would allow a child to be involved in a meeting of this type without the emotional damage of being present while only the child’s areas of difficulty are discussed.

Have your child answer some questions prior to the IEP meeting, when they are comfortable, and present their responses (with permission) at the meeting:

I have seen questionnaires intended for parents at IEP time.  It’s often stated at the top of these forms that “your input is needed” and it absolutely is.  However, I would also suggest something similar for your child.

When you are at home and your child is comfortable, ask them some questions about school.  Explain this is because you are going to talk to their teachers to figure out all the ways to make school a good place for them.  When you are done asking your child questions, be sure to ask if they will let you share what they said with their teachers, so the teachers know important things about your child.

Here are some sample questions you can ask your child (feel free to adapt according to child’s understanding):

What are you good at?

What do you need help with?

What do you most like to do at home?

What is easy in school?

What is hard in school?

How do people treat you in school?

How do you want people to treat you in school?

HOW TO COPE IF THERE IS NO OTHER CHOICE BUT TO BRING YOUR CHILD TO THEIR IEP:

Even the best laid plans are at risk of falling apart at the last minute.  So if you can’t find a babysitter or if your childcare falls through at the last minute, here is one suggestion to help your child cope at their own IEP:

Headphones and a movie:

Giving your child crayons and paper, or a book to read is not going to be enough of a barrier from all of the words they will hear about themselves.  In the instance that their presence at their own meeting cannot be avoided, bring headphones and your personal gadget of choice with their favorite TV show or movie.

This will provide not only visual distraction but auditory as well, so your child does not have to hear everything that is being said about them.  If you do not have access to a media-playing gadget, a favorite music playlist (or dust off your old Discman and make a mix C.D.) can suffice when paired with another quiet visual activity.

Your child is the heart of the IEP team.  Involve them, but also protect them.  That way, when the time comes, and they are old enough, they can confidently be a part of this process, working alongside you, to let you know what is best for them.

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