Be the Bear

So, it seems the start of IEP season is upon us. I was notified that we are scheduling Em’s IEP meeting for February. They are popping out everywhere. Others with children who have them are getting those meeting scheduled. We are having conversations in our circles. But there is a deeper and more disturbing discussion underlying each conversation.

Currents flowing through the discussions:

*Frustrated with the system.

*Fight with the system to get/keep/maintain services our children need and deserve

*Panic over the actual IEP meetings

*Feeling like it Us Vs. Them 

This time of year is hard on families who are working hard towards keeping their children moving forward and NOT backwards. When schools see progress some are quick to say, “See, they don’t need xyz.” Then we are hard pressed to fight to say, “Wait. Don’t take it yet. I think it’s presumptious to remove something when it’s a new to them behavior/progression”. Anxiety runs rampant and our children feed off that.

We get ourselves geared up going into these meetings. We may love the teachers. We may even get along with that administration. And some of us still work together well to provide for our children. I used to think that it was possible to not fight with school district to attain your child’s needs. I used to think that in fact, the parents that were rude were not being reasonable. I set unrealistic expectations that are impossible for myself.

My daughter has ASD. Autism Spectrum Disorder. To look at her, she appears on the surface like many children on the spectrum, normal. She has her little quirks and traits that you learn to help them embrace and shine with. I don’t believe for one second it makes her less likely to succeed. I think in fact it makes her MORE likely to succeed as she has to learn to work harder and persevere to meet her goals.

If we were only dealing with ASD, it’d be a cake walk. But alas, she also has high anxiety and ADHD. She’s at an age where kids don’t work well with you if you are different and unique. If you don’t quite fit a mould for their expectations you are the one who is often “silenced” during the group projects. Given a fluff job. That doesn’t fly for my little butterfly. She wants to shine and show she’s smart and can do it too. She wants to be heard. This year, she worked hard to fly and be heard. It was a struggle but she had a resource teacher and other teachers who utilized her IEP and made adjustments to work for her.

When communication breaks down in any environment, at any level, frustration ensues. One thing we’ve worked on with Em is to keep those lines of communication open. Once she is frustrated, she can shut down or melt down. In either case, it’s not nice. Nor is it fair to those around her. Last year was a struggle to get her the tools. We fought. We had an advocate. There were mornings I wanted to puke due to the stress of knowing later that day I had a meeting and I needed to be the voice for Em. We found common ground but it wasn’t easy nor was it without concessions.

I learned that we are truly the only people that are going to fight for our child(ren). Advocates (actual advocates and great resource teachers), will give you the strength, courage and knowledge to fight smarter, harder and better. They will take up the cause and stand with you. They will also let you know if you are being unreasonable. Being that cooperative parent only gets you so far. At some point, you look back and realize you aren’t cynical now, like you thought those rude parents were. You look back and realize how naive you really were.

I realized I need to embrace my inner Bear and fight for my cub. I’m still struggling to stand up to the administration. It’s taking everything in my power to gain my voice, and overcome the impossible expectations I set for myself. Yet, it’s what I do. I do it because Emelie needs to have a voice heard when hers isn’t loud enough. Like that cub bleating from the tree for Momma Bear to come and save her, I need to come and send a resounding ROAR to be heard.

We aren’t alone. We are NEVER EVER alone. When it comes to IEPs, someone has walked this path and can be there for you just like you are where someone else has been and will be there for them. I had my transformation from that shy little momma wanting everyone to get along to that momma that is going to fight with her last breath to get her child(ren) what they need!

So IEP families: I feel your frustration, pain and anxiety. Just remember, you are good parents. Fighting for your kids and being there for them is what we are suppose to do. The system cannot rob you of that title. Mom, Dad, Caregiver, Grandparent, Sibling; You are fighting FOR them. For what you see as needs.

Be the Bear!

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5 thoughts on “Be the Bear

  1. autismschild8

    Excellent post. I too have an autistic son, he is on the severe end of the spectrum and he has complex needs too. It is a hard slog to fight for everything but you are absolutely right when you say that we must be the bear. We have to be – often these children don’t have their own voices. Thanks for the inspiration. 🙂

  2. bizigal

    I wish I could talk to you personally. There are so many things I want to say to you. But I will list them instead.
    1) Yes, you are the ONLY one who will advocate.
    2) Yes, it is you vs. them.
    3) Get loud and get serious. I don’t know how old your kidlet is, but if her Autism Spectrum disorder will allow her to go to college, then don’t give up any accommodations unless you need to change them for “age level and appropriateness.”
    4) Who cares what the admin, or teachers think? It is just business, it is not personal. Keep telling yourself that. You will find your voice.
    5) But above all, do not sign a thing if you don’t like the changes. Just because they give you a form to sign doesn’t mean you have to sign it. If you don’t sign it, they can change it. You should sign only the form that says you were in attendance.
    6) Do not ever (yes, parents do this) let them hold an IEP meeting without you. Yes, they say they can if they want to , but warn them that you will file due process if that ever happens.
    7) I was once told my son needed to be in a self contained class and would not go to college. When I started screaming, they had to shut the door. No, I didn’t make any friends while my kid was in middle school, but I didn’t need friends like that. Now, he is in college and I have never looked back.
    Good luck; keep us posted. I do care.
    specialedteens.wordpress.com

  3. bizigal

    That is awesome~! People don’t realize what it is like to have to deal with these issues every single day. I have learned so much about “red-tape.” Now, I am going through college all over again. But, I always go in with the mindset, “it’s just business.”
    Keep posting I would love to keep reading.Thanks

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