Monday, September 23, 2013

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.

14 comments:

  1. Oh man Jennifer - I am sooooo sorry this happened to you! Believe me, I know all about hindsight being 20-20. I really appreciate you sharing this because I'll be heading to Hope's first IEP meeting soon. Good for you to not just give up but to go back fighting. :)

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    1. Hi Lisa! I will be thinking about you and Hope's first IEP meeting! We learned so much through this process. Please send me an email if you have any questions. Sending good vibes that all goes well and that Hope gets all of the support she needs and deserves!! Jen

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  2. This post is giving me a valuable insight, Jennifer. I work with another 4 y.o. whose IEP meeting I will be attending later today. I worked with him from the very first day of his JK and I think it is really nice that those who are writing his IEP are inviting me ( a direct support person - teaching assistant) to this meeting. Now that I have heard from you - I will be much better prepared what to say and how to handle the situation. Thank you for sharing!

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    1. I hope the meeting went well! The support team are KEY-- your role is so important because you are in the trenches helping to carry out the building blocks that help make these goals possible. Thank you for being a teaching assistant-- we love and thank all the amazing teachers and educators out there! Jen

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  3. Jen this is not your fault. You were totally blindsided by this - shame on the school. I remember Kate's first IEP - they were amazing here. We scheduled it ahead of time, I had to bring Kate and they had someone there to entertain her and they explained everything in full detail to me. I too was overwhelmed but knowing this was my first one they took the time to make sure I felt good about what was happening. This was not an epic fail for you - it was an epic fail for the school for not providing a good experience for you and not giving you the notice and environment to make this a successful meeting for everyone involved. I love how you share you experiences on here - it is so eye opening and a great reminder to all of us whether our kids are special needs or not (having one of each) that we need to be the best advocate we can be for our kids.

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    1. Thank you, Cindy! We have learned so much through this process and I hope we can share that great information with other parents and caretakers and educators to help all of us collaborate and come together in the best interest of each child! Your little ones are so blessed to have you as their mom as you are also an incredible advocate! Jen

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  4. Oh Jen, your post made me sad and yet hopeful all at the same time. Scary blinding situations happen to the most prepared, educated and well-meaning parents out there. Shame on the school and I'm so sorry you went through this. To find a silver lining, perhaps it is good you have this experience early (not that I wish it on any of us!!) as the old cliche is true: What doesn't kill you will make you stronger!!! You will be Joey's strongest and best advocate his whole life and you will come out on the better side of this, I promise! xoxoxo

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    1. Ellen! You are so, so right! We have learned so much from this one experience that happened literally only a couple of days into Joey's public school experience. Positive changes and so much more knowledge has come as a result of this situation. Thank you for your advocacy and for being one of the "phone a friends" I feel I can always call on. You rock!!! Jen

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  5. Oh Jen! I am so sorry! Please please please do not be too harsh on yourself. What an amazing, honest and heartfelt post. While this will not help you feel better, it is such a great post for all of us Mommy/Advocates out there. Even the most educated, prepared and best-intentioned of us (and you are indeed the gold standard!) get "hood-winked". But organizations like The Arc exist for that very reason - to help us. While, I'm sure you didn't want this experience, what a great lesson in how to "Fix" IEP stuff. One you will never forget. One thing I do know: You and Joey will come out on the better side of this. Chalk this puppy up to experience my friend (although I know it's easy to say, hard to do). Shame on your school. Shame, shame, shame on them!

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  6. Jen, this is such a powerful example of your strength as a parent and an advocate. You thought about every detail that went wrong and described it so well. Your strength and resilience is so encouraging. The school team should read your post and if they don't feel horrified and ashamed at their awful, unprofessional behavior, well then your post needs to get to every teacher, administrator and college level professor as an example of what not to do!
    There was absolutely nothing done right or the way they have all been taught to work as a team and invite a parent to an IEP meeting. Yes- shame on them.
    If you want to stay- build a relationship with this school -this team, this could be one powerful turn around opportunity. I'm just thinking you are an amazing, articulate and powerful advocate. If anyone can do it, you can. Just maybe, when you come to the next meeting- bring another person- someone that knows the way it's suppose to be. If this team - all of them don't feel apologetic- well, I am just going to think positively that they all can't be so horrible. I believe they really want to do the right thing. They just messed up really really bad and they need to know you know they did and you want to give then a second chance.
    Cindy Norwood

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    1. Hi Cindy! Thank you so much for your kind words. We did exactly what you suggested!!! We took an advocate from a local organization and she did not have to say a single word the entire time other than to introduce herself, but just having her there with us was WONDERFUL! I think that we got our points across in a respectful and meaningful manner. It was a very short, but important meeting that I hope and believe had a big impact on our relationship with the school and how we will be moving forward. I'm working on a follow up post right now to describe the second meeting. Thank you for your encouragement and great ideas. They were not all so horrible at all. I honestly think they might be a little numb to the process and might not realize what it is like to be a parent of a little 3-year-old who does not speak or walk yet and be confronted with changing and reducing his support. I think that our meeting helped shed some good insight into what we felt. Thank you again! Jen

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  7. What a nightmare. Don't beat yourself up. I'm sure I would have been off guard and done te same thing. It will work out : )

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  8. This is a good reminder for teachers - even if you think the parent knows what a meeting is, make it VERY clear if it is set up on the phone, especially if there's going to be a big group of people there!

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  9. Izzy's first IEP meeting will be coming up soon and I am so scared. I am so thankful that I can read and learn from others so I can be the best advocate for Izzy. I am also a people pleaser so that is one of my fears is that I will not speak up.

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