Back to School & Back to Fear

I didn’t know how back to school would go.

I spent the last weeks of summer stressing, worrying, reading over IEP’s, making notes in my phone regarding behaviors, wants, and dislikes.

I felt like I was sending my kids into a whole other world, one that I myself was not ready for.

I worried if I was making the wrong choice by sending them to public school.

If the people that were going to be on their team understood them.

Would they be loved?

Would they be embraced for exactly who they are or would they be expected to change?

Would they be looked at as a distraction or a disturbance in the classroom.

Do the people on their team have any understanding of autism, and not just autism but non speaking severe autism.

Will everyone communicate with me?

Do they think the accommodations and explanations of my kid are just excuses for the unwanted behaviors?

The first day came and went for Harper Jo and it wasn’t great. The second, third, and fourth day came and went and if I’m honest they weren’t that great either.

I knew this transition into school would be tough on her. I knew it would take her time to adjust and settle into all the new. New people, peers, walls, toys, schedules, routines, food, everything is NEW.

Today was day 6 and its getting better. Unfortunately I have to come to grips with the fact that I can’t keep my kids in a bubble. More than not in their life they will be surrounded with people who maybe don’t understand them or even understand autism.

Starting this new school year out I just pray that they will be embraced more than not. They will be treated with respect, care, compassion, understanding, and love.

The weight we carry as parents to kids with autism is HEAVY. The weight is always there but with every situation I pray I learn how to carry it differently.

Yes, I have 2 autistic children. Everyday will be a challenge things that they loved yesterday they may despise today, but we are figuring it out.

Watching them grow and change is the most beautiful blessing. I will continue to show up and advocate not just for my 2 kids but for them all. Our world wont change with us keeping our families and our kids cooped up in the house. People have to experience autism to begin to understand it.

So we will be out and about, you will see us. Maybe in a meltdown, maybe laughing, maybe dancing or singing, or sprinting after Harper Jo with Dallas under my arm through the school parking lot after kindergarten screening with 2 speech devices hanging off my shoulder…sweating! Which I’m sure so many people did about a week ago. It’s ok you can laugh! Lol it’s funny now….

I will not stop being afraid or holding my breath when my phone rings. The fear wont go away but I will learn how to carry it.

Just love our kids and never dim their sparkle, they have so much to give to this world.

This piece is written by Shelby Shivener of Advocates & Autism and Autism on the Farm.

Comments

Speech Device.

Speech Device. A huge misconception about speech devices is that they discourage children from using their verbal language. This could not be further from the truth. Keeping a communication tool away from a non speaking child is not a way to get them to speak. Harper and Dallas both started with PECS. A picture exchange system to express their wants and needs! As a mom of 2 non speaking children getting them to use PECS as a means of communication was a life changer for us. Now Harper has her speech device. Dallas’s is in process and will hopefully be here soon. Since getting Harpers device that has verbal output when she presses a button to make a request. She is able to answer so many question and let us know what her wants and needs are. She is also repeating the words after she hears her device say them. Harper can answer me with her device when is ask, What’s your name? How old are you? When’s your birthday? What do ...

Harpers Beginning Part 1

When we received Harpers diagnosis of Autism my way to deal with my grief was to dive into the world of autism. I wanted to read and learn everything I possibly could. When I would find a new blog, podcast, instagram or facebook page I would scroll all the way to the beginning. I wanted to see if someone had a child like mine. Trying to find any community I could. So my blog is going to start at the beginning. This is Harper’s story. With my oldest I had preeclampsia and high blood pressure and I delivered Savannah at 35 weeks. With Harper I had a plan and was more informed on what to do and not to do to try to prevent having those same issues again. But at 13 weeks pregnant with Harper on September 24th 2017 I was admitted to the hospital and immediately rushed into surgery because my appendix has ruptured. I remember everything from that time. I knew pregnant women shouldn’t have surgery, anesthesia, medications, all of the things that I was about to have done to me. My O...

Communication Looked Different

I remember before diagnosis. There was a stretch of time where I was just a tool for Harper and Dallas. They only needed me to get them food, change them, open items and that’s it. There was no verbal communication and not much non verbal communication. Communication consisted of crying. Dallas when he would want something he would just cry. There was nothing that led to the crying. He was either fine or crying. If he wanted a drink to let me know he would cry. Harper would just drag me around. She would grab my arm and pull me to the fridge and it was a guessing game of what she would want. If I grabbed the wrong thing she would cry. If I grabbed the right thing she was silent. For both of them there was no pointing or reaching. This time of our life was hard! But this time of my life taught me so much! I learned so much about my kids. I compare it to a newborn. When you have a newborn you are in tune with them. I remember I learned diff...

Autism On The Farm

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