I Wish We Didn’t Have to Fight

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Sometimes I wish we didn’t have to fight; fight for services, for inclusion, for equality. But I know that is not the case.

We will always have to fight because my 4 year old, nonverbal son diagnosed with autism will never be fully accepted by everyone, and that makes me so incredibly sad. 

I am reminded of this from time to time and every time it stings.

This week I was reminded again how the neurotypical world doesn’t quite understand and accept my son.

Franklin has been in an Early Childhood Developmentally Delayed classroom since he was 2.5 years old and things have been going great.

When he turned 4 we started discussing the idea of integrating him into a regular Pre-K room for half a day and I began the process of advocating for him to be part of the general education setting.

I am no stranger to the education world because I have been a special education teacher for 12 years. The school district that I live in had never actually done this before so I was pushing in every sense of the way. 

After several conversations, meetings (with 13 people), and emails I was elated that the team wanted to try this and allow Franklin to be in the Pre-K classroom for half the day. 

I just want that to sink in for a minute for parents of neurotypical children, “I was elated that they were going to allow”…

I wish every parent of child that doesn’t have a disability understood the fight we have.

Our children don’t just sign up for Pre-K and show up on the first day. We fight for it to happen for a long time before and it still doesn’t happen for many. 

I was so happy that this was going to happen. I had met his teacher and really felt comfortable with her willingness to accept Franklin into her classroom.

As a team we decided that he would start two weeks later then every other child so that she could get the Pre-K chaos to a minimum before we introduced Franklin.

That sounded like a great plan!

I even contacted the teacher and set up a time to come in and have the students meet him and I showed the video clip of Sesame Street introducing the character Julie who happens to have autism.

I spoke with the students about some of Franklin’s differences and it went so amazing. I was so excited for him to start yet so anxious at the same time. 

Monday was his first day and it went great!

I got a great text from his teacher and I was one proud mama.

It’s no secret to parents of children with autism that they have some sleeping issues and Tuesday morning, my little guy decided to wake up at 3:30 am and not go back to sleep.

He was in good spirits, but I sent an email to both his teachers to give them a heads up about his early wake up time and that it could affect his day.

The response I got from his general education Pre-K teacher brought me back to reality that my child may never be fully accepted. Not one positive thing to say, just all the things that make up his disability in a negative connotation. 

This is on his second day in class. My heart was broken.

The first thing that ran through my head is that she does not want my son in her classroom.

Don’t get me wrong, I want to know when my son is doing things that are wrong or bad and I am a teacher and understand the need to communicate these things.

I also know how different and difficult it can be to have a nonverbal child with autism in your class for the first time. But there was no compassion, no plan to help with some of the behaviors just complete negativity to every difference my son presented because of his autism.

This email just brought me back to the real world, a world where we will always have to fight; fight for awareness and acceptance, fight for inclusion, fight for the right for my son to be involved in things that parents of neurotypical children don’t think twice about.

I will never stop fighting, but sometimes I just wish I didn’t have too. 

Written by, Jessica Bluhm

My name is Jessica Bluhm and I am a 6-12th grade special education teacher and mom of a 4 year old son with autism and a 2 year old typical daughter. I am married to my best friend, Tyler and we enjoy spending time with friends and family.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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