Posts Tagged ‘severe autism’
Achieving Independence
I believe in honesty, transparency, and reality. So, I would be lying if I said I wasn’t scared about providing lifelong care to my son. And there are times when that fear can consume me. It will eat me up at 3 am if I let it. But I’m working on it. I’m working on managing my fears and worries. And I’m working even harder on teaching my son all that I can to help him achieve his greatest level of independence. I push. I pull. I teach. I hope.…
Read MoreParents: Celebrate The Moments
To the mama whose baby isn’t starting school today. To the parent who is wondering if they should take the picture. And wondering if they should celebrate just another day. To the dad whose sending some kids back to school but not the others. To the parent feeling a twinge of sadness today. Or a lot. I understand Your child doesn’t go to a typical school. They go to therapy. There are no grade levels. Just continuous time. Or maybe they do but they aren’t really in a grade. On…
Read MoreLooking Differently At Life
When my son’s autism was discovered six years ago, I wasn’t ready to think about the future. Nope. I focused solely on the present and helping him. And it wasn’t easy. It wasn’t like help just rolled in. I learned quickly there is no prescription for autism. Instead it was trial and error. And a whole lot of advocating (fighting) for services and supports. But hard work paid off. And he was worth every bit of the hard. When he turned 8, I was ready to dip my toe into…
Read MoreLearn to Bend
My daughter is about to be 12. In 19 short days she will be in her last preteen year. She is beautiful, smart, lives in her own world that we proudly insert ourselves in everyday and she also has autism. Severe, non-verbal, complicated autism. And this world we live in is not designed for her. We have to make constant alterations to the environment around us to make it tolerable for my girl and her needs. But unfortunately the environment and the people in it, don’t always want to bend.…
Read MoreWhen I Read About Feda Almaliti
Even before my son Johnny was diagnosed my life has been all about autism. Trying to somehow figure it out so I could help my son. At first it was asking questions, then it became looking for help, and now it’s fighting for him. Sometimes I forget that everyone doesn’t know about autism. I forget because we live in a world where everything is catered to us. All my social media knows I talk a lot about autism. My ads are all supplements that are supposed to help my child,…
Read MoreNever Ever Give Up Hope
Our family’s number one goal is to get in the community together. It’s never really happened. Well, not successfully. But we refuse to give up. Tonight, our middle son had flag football practice. I wanted to go. My husband wanted to go. We wanted to get the other two boys out of the house. So, we did it. Cooper’s motivator and encouragement…two (not one!) vintage train magazines from eBay. His most favorite thing in the world. We stayed an hour. I have never, in nine years, been more proud of…
Read MoreBeing Invisible
There are many beautiful things that I was gifted when I entered the world of special needs. Things that most people outside of our world know nothing about. Because they are unique to us. To our world. There are honestly to many to list. But one that rises to the top is that I get to see the people who see Cooper. One would think that a 9-year-old boy who dances in the rain and wears brightly colored leggings couldn’t possibly be overlooked. But it happens every day. People hear…
Read MoreDoctors And Nurses: Thank You
This little peanut had an outpatient surgery this morning. Nothing too serious. But nevertheless it needed to be done. I want to say the hugest thank you to Pediatric Surgical Associates, LTD and Children’s Minnesota for providing outstanding care. Harbor was charming, patient, darling and easy. It went as smooth as it possibly could have. And everyone was so kind to us. For anyone who has followed us for a while, you know that my older son Cooper is no stranger to different procedures. This mama has spent many hours wandering the halls of…
Read MoreYour Ups And Downs
Some days I wish I could just press reset. Or snap my fingers and make life easier for you. But I can’t. It doesn’t work that way. Instead it feels like ups and downs. Today you had an amazing speech session. The best in months! I think we gave you a hundred high fives. But then when it was over you dropped to the ground in the lobby and refused to get up. It was hard. It was over paper. You also kept a bandaid on your toes. You are…
Read MoreThe Future Of Autism
When my son’s autism was discovered at age three, I focused on the present. I dove into getting him all the help he needed. And our family too. When he was six, I started to think about the future. About forever. But I wasn’t ready yet. And many people told me not to think about it. They told me to wait. To take it day by day. Now that he’s nine, almost double digits, I can see the future with some sort of accuracy. I like to say we all…
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