Posts Tagged ‘severe autism’
Ear Infections, A CT Scan, and Autism
My Super Cooper had some rough ear pain last night. It was the first time in his life he has ever cried out screaming and crying. My kid is tough. Jamie and I practically levitated out of our chairs at the intensity of his screams. When your kid is nonverbal you start to understand cries and noises. This was real. For a brief second I was scared to look in his room. By the sound of his screams I couldn’t really imagine what had happened. He was laying in bed…
Read MoreWhat is TEFRA? And How Can it Help My Family?
When my son was diagnosed with autism at age three, I remember hearing about services available. I heard about Medicaid. I heard about Social Security. I remember inquiring and realizing that we over the income limit. Which at the time was fine because I never believed we would actually need services. Or help. Both my husband and I worked. We had good health insurance through my husband’s employer, Wells Fargo Bank. We assumed that everything would be covered. We assumed wrong. Good health insurance often only covers a small portion…
Read MoreI Am A Parent Who Waits
I remember when I was pregnant with my son I would imagine and dream about his future. I’d think about the cute things he was going to say and do. I’d look at other children and imagine myself with my son. I’d imagine him playing sports, making friends and playing games with me. I envisioned the conversations we’d have. I would get lost in a daydream of Jamie teaching him to catch his first fish and me running behind after his bike. I pictured myself having the kid that says…
Read MoreA Constant Sense of Urgency
I felt a sense of urgency the second I realized that something was different with my son. An urgency to help him. An urgency to do everything at once. An urgency to ramp up, take autism head on, knowing in my heart that the more we did, the better the outcome would be. I remember the day our Pediatrician did a referral for the Help Me Grow service to come to our home to evaluate Cooper. Their job was to see if he had delays. I called them immediately. I…
Read MoreLoving Our Son For Who He Is With No Expectations
This post is about the ‘start’ of our autism journey with our now 17 year old son Cody, who is on the severe end of the autism spectrum. This is when I first realized that my life was not going to be as I had anticipated or even hoped it was going to be and how I learned to be okay with it. And more importantly, how I turned those lost hopes and dreams into what is now my only desire. A lifetime of happiness for my son with no…
Read MorePushed to Crazy to Help My Autistic Son
“Our Nurse Practitioner said she would not speak with you. She doesn’t even know you. She sees no reason to speak with you outside of the appointment.” “You can leave your son in the waiting room for five minutes and talk to the nurse before.” “Our Nurse Practitioner has no time to speak with you between now and the end of February. She also has no time to read your emails.” ‘You can come to the appointment instead of your son and speak to our Nurse Practitioner but then you’ll…
Read MoreSome Days I Have Nothing Left
I brought Cooper to the doctor this morning. He’s had chronic ear infections for years and I need to know why. My son is living in pain and he shouldn’t have too. His behaviors sky rocket the worse he feels. Fix the pain, fix the behaviors. Seems pretty easy right? I knew this appointment was going to be bad. I never take Cooper anywhere alone anymore. At nearly 70 pounds I struggle to have control of him. He is fast and sneaky and a runner. One of Cooper’s biggest struggles…
Read MoreDenying What Was Right in Front of Me
I don’t really want to be writing this, because it’s not pretty. I’m somewhat ashamed of this moment, but it’s my truth. “Why can’t you just be normal??” This is what I yelled at my sixteen month old beautiful baby boy. The look on his face is forever sketched in my memory, as it should be. I should never be allowed to forget how awfully broken I was then. Noah had been seeking sensory input at an all time high. Spinning, head stands, making non stop noises {not babbling, big…
Read MoreAll About My Son’s Chronic Ear Struggles
My son has had chronic ear infections since he was 12 months old. Although, for most of the time, I didn’t know. He didn’t communicate it. He showed no signs. He never pulled on his ears. He never had a fever or a cold with them. He was showing us in other ways we just didn’t see it. Ways that are almost impossible to detect in a nonverbal child who may or may not have autism. I am still angry to this day that his pediatrician never figured it out.…
Read MoreAutism, Isolation and Inclusion
I want to talk about a topic near and dear to my heart and very real in our autism world…isolation. I remember it started when my son was very young. Back in those days though, we thought he was just a challenging toddler. Autism wasn’t even in our vocabulary yet. We’d joke that he couldn’t sit still or about how busy he was and dream about the days when we could actually leave the house again. We thought by age 4 and 5 he would for sure be able to…
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