I Never Knew that IEPs Would be so Hard

Autism is a journey. It is a journey in a foreign land. When you arrive there is no map, no travel guide, and no book of language translation.

You start to wander aimlessly looking for anything or anyone that looks familiar. Someone or something that can point you in the right direction.

You stumble and fall. You cry, kick the ground, and sit there determined that you can’t do this.

You are overwhelmed, disappointed, and discouraged. You don’t want to be here you want to go home.

Home is a land of friends, common language, and familiarity. You will never be able to go home.

This is where you will now live.

If you are going to survive you are going to have to start by learning the language. There are new words like stimming, dysregulated, and regression. Everything that you knew or understood about raising children is out the window.

You dress each day in armor. Armour to fight for services, fight for his heath, and academic success through IEPS.

You are fighting to understand a child and a disability that no one understands, including you, his mother.

As I mom I heard how horrible IEPS are. I have seen the posts about people looking beat up in a boxing ring, I have seen the t-shirts, and read the posts.

In the back of my mind I thought, “those parents must be ‘difficult’, have too high of expectations, or plain old unreasonable”.

So, when I went to my first IEP I wasn’t nervous. I thought here I have a little boy that has a diagnosis of apraxia, sensory, developmental, and cognitive delays. We will all sit down, collaborate, and provide him the best education possible.

I knew that there was a checklist that the school had. I knew that we would go down this list to make sure that Brayden received all of the services and opportunities available.

I did not study, prepare, or even take notes. In my mind an IEP was so simple. A group of professionals all putting in their input to make this little boy the best that he could be.

Boy was I wrong, I see why mom’s pack boxing gloves.

I work in surgery center. Each patient has and “IEP” aka surgical checklist.

The patient first starts out with a documented problem, “my knee hurts.” They see the dr. The doctor runs a number of tests to diagnose the problem, the goal is to help this patient feel better.

Most aliments can not be seen at first glance and require MRIs , x-rays, and CT scans. Once the doctor finds out the problem he has a checklist that needs to be completed prior to the patient having surgery.

This sets the patient up their best chance of surgical success.

Now when you tore your ACL did the thought cross your mind that you needed to research what tests need to be preformed or what lab work should be drawn?

Did you think you should take a crash course in billing for the insurance, be knowledgeable about anesthesia, or take notes to make sure that the OR team properly sterilized and prepared the equipment?

Did you for a moment think you should purchase a gown, the screws, or the ace wrap needed? No, you figured the surgical hospital does this every day. They have got this. They want this patient to have the best outcome possible.

If for some reason along the way the doctor is not sure about how to proceed with treatment, he asks his partners to give their opinion and suggestions. Asking for help is not a weakness. It is collaboration and provides the most holistic care.

However, once the doctor starts the surgery he finds out that there is more wrong than originally suspect and he needs to change the surgical plan. Just because the consent form said ACL but you tore the MCL too he isn’t going to “leave you broken” and proceed on because something was not originally detected.

He wants you to be able to keep up with your peers and lead a happy and productive life.

An IEP is not that much different than a surgical care plan. Everyone wants what is best for your child, at least that is what I thought as a mom.

At each and every IEP meeting I cry. I tell myself that I won’t. I give myself a pep talk.

However, as I sit at the meeting I can feel the tears building. I feel the IEP is written before I even walk through the door. They will listen to me but often I don’t feel they hear my concerns.

I feel decisions are being made by directors and authority figures that have ever met or evaluated my son. His best interests are not what is important. I feel there is an underlying agenda.

When you go into an IEP you need to be a lawyer, speech, OT, PT, teacher, advocate, parent, and IEP expert. The language in the IEPs is so foreign, goals are so vague, that you feel you need an interpreter to help you understand this document. Y

ou hunt and search. You find out you forgot to put field trips in the iep. So while all the children are at the Children’s museum yours isn’t allowed to go. They don’t have an aid and the therapist that you offer to provide is rejected.

Your heart longs for your child to be treated like all the others. You beg to meet the aid. You volunteer to come into the classroom.

With each request you are politely told no, that isn’t how they do things. “We don’t want to disrupt an entire classroom for one child.” You learn that there isn’t a sensory room, and they used the nurse’s office when your son is overwhelmed.

You worry if they can communicate and understand him. You receive reports he bit the aid. You wonder how they plan to teach him.

His future is now in their hands. He doesn’t want to go to school. His anxiety is keeping him awake at night.

Each day when he gets home from school he is so dysregulated that it takes him an hour to feel comfortable in his own skin.

You know there is a way to reach him. If you don’t keep hunting and searching to help this little boy no one will. For each IEP meeting you realize that you need to know the language, be willing to support your point, and stand your ground.

You need to research dpi, take notes, and know your special education rights. But at the same time you need to have the perfect combination of kindness, understanding, collaboration, and perseverance.

I dread IEP more than anything.

So when I see the pictures on Facebook of the moms that look like they have gone 10 rounds in a boxing ring, the tears flowing down their cheeks, and a look of defeat. I know how they are feeling.

Something that seemed so simple has turned into the biggest mountain yet.

As a parent you just want the staff to love your child as you do. You want them to see the potential, rejoice in the accomplishments, and defuse the sensory/behavioral “bomb” before it explodes.

I can honestly tell you I did not know that school would mean frustration, tears, and sleepless nights. In my mind it all seemed so simple.

As special needs parents we do not need extra worries, stress, and anxiety heaped on our plates. We need to feel someone put their arms around us and say, “I got this, I do this everyday.

This may seem like foreign territory that you are living in but I have the road map and can lead you and your child to safety and success. Please trust me. I will communicate, collaborate, teach you the language and work with you every step of the way”. It would be nice to take off the armor, feel a sense of belonging and home.

For this is the new land that I will be living in. I just need a little help to navigate the terrain and understand this new language.

There are not a lot of people in this new land so it only makes sense for us all to work together, communicate, and make this little boy the best he can be.

Written by, Laura Eiler

Laura Eiler Mother of 5. I have learned that I will always have to continue to fight, perserve, and look out for my kids. No matter what life throws at me.

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