We Can Work It Out

(note: I was tagged and asked to contribute to an IEP meme on Solodialgue – a way of sharing our experiences and knowledge of the process.  She’s an amazing writer and our kids are a lot alike, so I couldn’t say no. Here’s my contribution.)

I was out for drinks the other night with some friends.  And as much as we tried to talk about ourselves, the conversation floated back around to our kids.

I had just had our annual IEP meeting for Howie.  We were also going through his 3 year evaluation as well.

I told my friends about the meeting and about how I thought it went really well.  The discussion around the table was about how to make things work for Howie in school in a truly individualized way.  The actual definition of an Individualized Education Plan.  I went through the ins and outs of our new plan, why we made the changes we did, and how I feel like we’re all in a good position now to help Howie move forward.

“You made that happen.” my friend said.  I was a little startled, not quite knowing what she meant.

“It’s because you came to the table in a respectful and smart way.  You advocated for Howie and you knew what you were talking about.  They all understood that around the table.”

It was quite a compliment.  One that I will readily accept.

I need to be a major player on the IEP team to make sure my kid gets everything he needs to help him succeed in school.

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I could share the details of my son’s IEP here, but since every child is different and has different needs, I thought I’d go a different direction.

The IEP meeting itself can cause stress and anxiety for weeks leading up to the day, and the meeting itself can be quite daunting.  It’s usually the parent(s) and then any number of therapists, educators, and administrators sitting around a big table.  You’re discussing the most intimate and detailed issues about your child.  It can get emotional and painful quickly – on both sides.

I have worked hard to get to a place of mutual respect with all players on my son’s’ team.  So I thought I’d share how I’ve been able to make our IEP meetings successful so far.

I’m not talking bringing cookies and coffee to the meeting.

I’m talking work.  For me.

I have to do my homework: The IEP meeting can get overwhelming quickly as terms and jargon get thrown around the table.  Before our first meeting for my son three years ago, I asked a friend to send me a copy of her son’s IEP.  Not so I could copy it, but so I could learn the language used.  I understood that a flowchart would be used to determine my son’s eligibility for special education programs based on his autism diagnosis.  I became familiar with the different parts of the “grid” and delivery service methods.  I went to sites like Wrightslaw to understand the process.  And each IEP meeting, I make sure I know what each goal means and how he’s been progressing on them.  So that way, when our OT says “I’m going to move myself from the ‘C’ part of the grid to the ‘A’ part of the grid” I know that means that Howie no longer needs direct OT service work, but that she’s adding herself as a weekly consult to make sure his sensory needs are being met in the classroom every day.  Or when the BCBA says “We’re going to start taking more ABC data on Howie to better track his behavior issues” I know that means Antecedent/Behavior/Consequence data. That way, we’re not taking time to go over the details of the words in the meeting so we can have more time to have a philosophical discussion of what that means for my son. I also make sure I have read every report they have sent to us and have copies of the reports with me at the meeting.  I need to be as prepared as the other people at the table.

This also means filling out any and all paperwork that they send me.  For Howie’s evaluation, I had to complete a number of speech/language home assessments and a new sensory profile.  I did it the day I got them.  If I didn’t, I’m pretty sure I would have lost them in the sea of clutter in my house.  The therapists appreciated how quickly I got them back, because it makes their job easier too.  In our meeting, our special education director complimented me on returning the IEP meeting acceptance form and thanked me for answering the questions.  He said “Most parents just check off that they will be here.  They don’t take the time to answer the long term/short term goals questions, or write down what their child’s strengths and weaknesses are.  You help us by answering those questions.”  I can’t imagine NOT answering them.

I Know The Players: The names and titles of the people sitting around the table can be daunting : physical therapist, occupational therapist, school psychologist, special education director, etc.  But they are also regular people who play an important role in my son’s daily school life.  I need to know who they are and what they do before that meeting.  Howie’s OT has been working with him for three years now, and over those years I’ve gotten to know her well and she knows me.  So when she tells me in the above example that we’re dropping OT direct service, she looks right at me and says “We’ve been talking about this for a year.  He has met all his goals in amazing fashion” I know she’s telling me the truth and I trust her judgment.  Our speech/language pathologist is the same way.  She lives in my neighborhood and I wave when she goes by on her daily walks in the summer.  We stop and chat when we see each other.  Our special education director has a son who was in Howie’s preschool.  I send thank you emails. I drop in to school and say hello.  We have monthly meetings with his classroom teacher and BCBA to check in on how things are going.  I know them, and they know me.  They know my other two boys.  We aren’t strangers.  So when I walk in that room, there are no surprises and no unfamiliar faces.

Because we know each other, they know I will be as honest with them as they are with me.  I will give them the information they need to help my kids.  I made sure they had a copy of Howie’s recommendations letter from his developmental pediatrician before the meeting so they could read her suggestions and ideas.  I have been upfront about the fact that we have home behavior services now for Howie, and have even had his consulting therapist go into school to observe him there.  I’m not holding back, and I expect the same from them.

Because of this trust, they know I’m actually looking for information to help with Howie at home when I ask for weekly reports on his OT and social speech sessions and daily logs from his aides.  It’s not that I don’t trust that it’s happening, it’s that I want to be able to continue his work at home in a way that he understands.

I Know My Kid:  I am fully aware of my son’s strengths and challenges.  I’m not under any false impressions about his behavior, nor am I ignoring the progress that he has made.  So again, I know it’s okay to drop direct OT service from his IEP this year.  I know he has met his goals because I see him write, color, cut, fasten and zip every day.  I also know that his sensory challenges are not managed appropriately by him in school or home.  So I would never agree to dropping access to the OT room or a weekly consult to train staff to implement his sensory diet.  I’m also in full agreement that he needs weekly social skills session taught directly by the speech/language pathologist.  And I would never – at this point – agree to giving up his one-to-one aide, nor would I give up his extended year summer program.  And they know that.  It’s not about picking my battles here, it’s about knowing what my son needs.  So I’m not going to argue for services that aren’t appropriate.  But I will push for any and every service he needs for success at school.

I’ve learned to use direct and unemotional language in the meetings, but never letting them forget that we’re talking about an amazing 5 year old boy.  Our goals as a team are the same – to help my son succeed.  We’re all on the same page.

It’s still personal.  It’s still about my son.

My son’s team knows this and it leads us to creating a respectful discussion around the table.  We may disagree but we when we do it’s about the issues and not about personalities.

I have had to do a lot of prep work to get us to this place.  But it has yet to feel like they are out to “get us”.

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I’m not naive enough to think that this is some magic formula for the perfect IEP meeting.  I know that my experience, unfortunately, is not the norm.  I have friends who have done everything right and still end up fighting to get their kids even the most basic of services.  Money, personalities, and a million other factors can make IEP meetings miserable for all sides.

For me, the key has been realizing that I am equally as important as all the other people at that table – maybe even more so.  That is my child we are talking about.  His successes, his failures.  When he succeeds, we’ve done our job.  When he doesn’t, it’s not because of something he did.  It’s because of something we as a team didn’t do to help him.  I will make sure that his support team loves him and respects him as much as I do.

Our team is now heavily invested in helping my son reach his potential.  They want to see him smile every day.

That is our number one IEP goal.

“Life is very short, and there’s no time
For fussing and fighting, my friend.
I have always thought that it’s a crime,
So I will ask you once again.

Try to see it my way,
Only time will tell if I am right or I am wrong.
While you see it your way
There’s a chance that we might fall apart before too long.

We can work it out,
We can work it out.” – We Can Work It Out by The Beatles