How I Failed as a Parent and an Advocate - An IEP Lesson Learned the Hard Way

"How is school going?" I was asked by a friend. 

Um, well. That's a really good question. Up until September 11th I thought school was going really well. That is, the four days that Joey had been in the public school Early Learning Program. 

Photo by Nat.

The week before, one of his therapists had called to "get more details" about Joey's use of a mobile stander and then asked when I could stay after school to "fill in some information" for her.

Of course I would stay after school and talk about Joey and what he is learning to do, what he has tried to do, what he is working on.

I had no idea that walking into his school that day I was actually being brought into a formal meeting with multiple therapists, a student therapist, his teacher and other individuals who work with him. 

Little did I know that what I thought was going to be a one-on-one casual meeting with one of his therapists was actually going to be a full on IEP Revision meeting of which everyone else seemed to know was happening except for me. Or my husband. Or Joey who had just gotten out of school and was so excited to see me that I spent the entire time trying to hold him and look at him while he turned my face to see his (which is totally adorable, by the way).

Photo by Nat.

I was already a little unsettled after watching the memorials of September 11th on the news all morning and watching the planes collide into the World Trade Center again. On September 11, 2001 I was a fresh Lieutenant Junior Grade working as a JAG officer in Washington, DC.  As a result of September 11, two of the men I had met and dated while in the Navy where both killed while serving overseas in the aftermath of September 11. It's a tough day. It's not an excuse by any means, but I was definitely not on my game.

Furthermore, I have this ridiculous problem in that I want Joey's school and teachers and therapists to like me and to like him so that they treat him well. I don't talk about this much, but having a child who cannot speak and who cannot walk and leaving them in the care of strangers for 2 1/2 hours is one of the hardest things I have EVER done in my life. I want to trust everyone in his school. I want to believe that they have Joey's best interests at heart. I want him to be a good student and to learn and to rise to their challenges. I want him to be a success. I want him to be happy-- but at the end of the day, it's their word I have to believe and it's their word I have to listen to-- simply because Joey has no way of telling me.

So when I asked to see his therapist and was ushered into a large room with multiple people and a conference table I was flabbergasted. What was going on? Wasn't I just meeting with his therapist to fill in some details?

Photo by Nat.

No. I wasn't. I was right in the midst of an IEP meeting that I had no clue was going to happen. I didn't have Tom there. I had Joey sitting on my lap climbing all over me and the entire time I was trying to please the adults in the room instead of looking out for Joey's best interests.

I can't even begin to list the ways I failed as a parent and as his only voice. His only advocate. The only person in that room who has a moral obligation to do right by him. Oh, how I failed. It was an epic, epic fail.

So much so that I stayed up all night that night and the next night playing it over and over in my head and asking myself why I let it happen. Why didn't I say I wasn't comfortable? Why didn't I ask for it to be rescheduled? Why?

They cut his therapy by half-- which I understood to a point. A fair reduction would have been 40% and that is what we are going to try and go back and revise. And the reason a reduction is fair is that when the IEP was written, the school assumed Joey would be there 5 days a week, but instead he goes there 3 days a week and then to a private preschool (It's All About Kids)the other 2 days of the week. 

Then they removed two of his goals for the year because they told me he had "Zero percent chance of meeting those goals during the year." Can you believe it-- I just sat their and shook my head up and down as though I agreed to these cuts. As though I agreed to their determination that these goals were clearly beyond Joey's abilities over the course of the school year. That is what was the worst part of the entire situation- not that they were having the meeting without letting me in on it ahead of time, but that I didn't resist. That I didn't disagree- that I didn't stick up for him. That is what really kept (and keeps) me up at night.

He just seems to be interested in toilets and in standing. I feel like we could meet these goals...

He had been at school only 2 days when these decisions were made. This "meeting" took place on his 4th day of school.

The goals that Joey has "zero chance of achieving" by June 2014.

1. Standing up and hanging his backpack in his school cubby.

2. Sitting on the toilet without resisting for 45 seconds each day.

Seriously? Seriously?

Joey painting at It's All About Kids- the private preschool he attends.

And yet-- the people pleaser in me came out. I SIGNED THE IEP.

"Nooooooooooooo," you say.

"Yes," I say. I did it and I would never in a million years recommend that anyone do what I did that day. 

I am an attorney. I went to law school. I went to JAG school.  I KNOW BETTER THAN TO EVER SIGN SOMETHING RIGHT AWAY!!!!

It was an epic fail. One that has caused me incredible heartbreak and stress over the past two weeks. 

On the weekends we drive around looking at other neighborhoods wondering if we should move school districts. 

We went to the IEP training. We heard horror stories. We told ourselves that wouldn't be us. We would know better. We would do better by Joey. Well, let me tell you, the best intentions line a road to hell and back.

Who am I to preach to advocate and be the voice for your child, when I can't even do it myself?

I've beat myself up and down over this and we are moving forward with a new meeting tomorrow.

My best advice to other families is to take a deep breath.

If you are in a situation you are uncomfortable in-- tell them so and ask to reschedule to a better time when your support person can be there and you can have appropriate child-care so you can focus.

Phone a friend. This is why we are so active in our local Down syndrome community. When I was on my second night of not sleeping I called one of my Mama Mentors. She immediately knew what to do. She put me in touch in with an advocacy organization and they walked me through the next steps.

I called the school, said I would like to rescind my signature and would like a new meeting so that my husband could also attend and so we could have child care for Joey so we could focus.

In the meantime, we have talked about these goals and we are working on them at home. We are working on them at his private preschool (which offered to immediately try to work on these goals).  We have strategies and ideas about how to make these goals work-- a photo in his cubby, us practicing with a lower hook at home and slowly building up, us putting him on the potty 3-4 times a day for 45 seconds.

We want to work with the school. And from what we have seen we really believe that his teacher is an excellent teacher. We realize there are budgets, there are measuring tools, there are bureaucratic elements that feed into every decision, BUT we also realize that this is Joey's life and if we need to start learning how to really advocate and how to put his and our best foot forward only 3 weeks into his public school experience, then so be it.

We are now up to the task. I have accepted my failure and forgiven myself (mostly), but I'm still stinging from the experience. It felt like an ambush. It felt like a party that everyone else knew about except for me. It hurt. It still hurts. The pain is a very present reminder of how much we have to learn. Of how we need to learn to navigate the system in a way the best benefits Joey. 

Wish us luck-- and best of luck and may all the strength and fortitude be with each and every parent out there who is walking the road of being both a parent and an advocate for you child with special needs.