Posts Tagged ‘severe autism’
When your Search for Answers Brings Sadness
Hey friends. First, a huge thank you to everyone that emailed, commented and messaged me after my sad post a few nights ago. I read every word. Second, here is the video I know many of you have been waiting for. A few days ago we took our son Cooper for an appointment at the Mayo Clinic. This was the first of eight appointments over the next couple of months. It’s a big deal in our world. I finally found a doctor that will look at Cooper’s whole case….not just…
Read MoreIt’s Okay To Not Be Okay
I know a lot of friends are waiting to hear about our day at the Mayo Clinic. I have so much to say. And tomorrow I will do a video. But tonight I am sad. And I’m just going to be sad for a while. Autism is so unbelievably hard. Some part of me always believed that this was going to get better. I thought maybe, just maybe, someday, he’d snap out of it. He’d start talking. He’d tell me about his day. He’d call me mom. I thought someday…
Read MoreSigns to Bring Awareness to the Invisible Disability
Last April, Cooper and I were playing at an inclusive playground in our town. The park was developed by a family of a little girl with Cerebral Palsy. It was the one place that I felt comfortable bringing Cooper alone. With inclusive playgrounds, the objective is to include everyone. They are thoughtfully designed to provide a safe place where children of all abilities can play together, and are developmentally appropriate for children with and without disabilities. Just as the name suggests, inclusive playgrounds have another mission that goes beyond the physical accommodations and specialized equipment.…
Read MoreTell Her My Name Mama
Yesterday, we had a social worker visit at our house to chat about Cooper’s waiver and complete paperwork for the upcoming year. This is nothing new. We have people in our home constantly discussing Cooper. That’s the world of autism. We used to have friends come over for dinner and drinks and now we have social workers and therapists come over and talk about autism. Oh, how life changes. Anyhow, yesterday was especially chaotic. Even for us. Sawyer wanted to make jello. He wanted a drink and a snack and…
Read MoreI am my Autistic Son’s Person
I am my seven year old autistic son’s person. I have been since the day he was born. He looks for me in a crowd. He seeks me out in our home. He demands me. He is always touching me. If he is wandering he demands that I am the person that follows behind. If I take a break to relax than he is clinging to me until I get up. And until recently he never developed relationships with other people. He didn’t see the value. People in our lives…
Read More9 Ways to Prepare Now for Your Autistic Child’s Future
A few months ago my autistic, but otherwise extremely healthy child was denied life insurance. I was shocked and confused. When Cooper was born, in preparation for college, Jamie and I started a savings plan for the him that could be converted into dollars for college tuition. Smart right?! Recently, I received a letter in the mail that notified us that Cooper was denied coverage. I was irate. Autism is not a death sentence. My son is healthy. He has no medical conditions. An At-Risk Life After following up I…
Read MoreTen Services Available to Help With Your Autistic Child
When my child was diagnosed with autism I thought the help would start rolling in. I firmly believed that getting the diagnosis would be the hard part. Once we had that we would start helping him. Maybe you will be one of the lucky ones where everything falls into place. In most cases that’s simply not true. Helping your child will feel more like an exhausting game of trial and error. You’ll spend time googling and wondering what your next steps should be. You’ll hear about other families that have…
Read MoreOur 2017 Year in Review
I often find myself talking about all the things my autistic son can’t do. I don’t mean too. I’m not negative. I’m just human. And when you get together with a friend who also has an autistic child you start listing out where they are at. Yes, they are nonverbal. No, this and yes, this. And before you know it the things they can’t do outweigh the things they can do. I worry about where he is at. I get overwhelmed by how far he has to go. Sometimes I…
Read MoreI Changed My Way of Thinking and it Changed My Life
As a mom to a little boy with autism I live by the quote: ‘I changed my way of thinking and it changed my life.’ I haven’t done a video in over a week! In this (long) video I give an update on our life and then discuss my evolution as a mom to a child with a lifelong disability. I get asked daily if I really am as happy and positive as I appear in my videos. The answer is yes. 95% of the time my sons disability motivates…
Read More9 Big Mistakes Parents of Autistic Children Can Avoid
I often think of my son’s autism as a journey. A journey that not only he is on, but our family as well. A journey with many, many challenges. And holes and cliffs. And of course it’s slippery. The hills have jagged rocks and most of the time I feel like I am hanging on for dear life. There is no safety harness or map. I typically don’t know if I am even going in the right direction. And perhaps at times I fear that I might be going backwards.…
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