Archive for January 2019
Dear Friends and Family, It’s Been a While
Dear Friends & Family, A few months ago, I felt a small cyst in my right breast and still haven’t been able to see a doctor. This brought on a harsh reality for me as a mother of a child with special needs: I don’t have time to be sick, to go to my own appointments, or to die. I never thought about that until today. I don’t have time to get depressed or get my own therapy. I’m so busy holding it together for my daughter that it has…
Read MoreNo One Talks About Group Homes
I have this recurring dream. I don’t have it very often, but I have it enough to recognize it through the years. In it, I’m alone in a vast ocean. The sea has picked up and I’m treading water with my head barely above the waterline. The waves occasionally crash over me and I come up gasping for air. There is no thought involved in this, I just tread water automatically with a tinge of desperation, struggling to keep my head or sometimes even just my mouth above water so…
Read MoreThey Say it Takes a Village
They say that it takes a village to raise a child. I have wondered where you get this village. When my son was first diagnosed with autism I did not want to tell anyone. I knew that he would beat the odds and recover from autism. Maybe it was ignorance, denial, or wishful thinking. I thought that if I worked with him hard enough, provided him enough ABA therapy, changed his diet, gave him supplements he would return to the little boy that he had been before his regression. But…
Read MoreSanta did not Bring my Nonverbal Son’s Voice
Every time I go through a “grieving phase” of autism I always think it will be my last, or at least I always hope it is. However, emotions are fluid, and thus like waves in the ocean it never dies. I find that holidays are always a stressor for the grieving process. It truly is hard to let go of what you thought your life would have been like prior to the diagnosis of autism. I think it’s hard for people who aren’t going through this to understand that. It’s…
Read MoreWe are Just in the Thick of it Right Now
Jamie and I have been talking a lot lately about the future. I think it’s because we are in the thick of it right now. We have three kids. Three young kids. All boys. Busy, busy boys. Busy schedules. Sports. Play dates. Therapy appointments. Families. Friends. Obligations. Dogs. A constantly messy house. Mounds of laundry. Careers. Trying to make money. Pay down debt. Sleep deprivation. We both want to get healthier. That means trying to eat right and get to the gym. We both want to find balance. It’s like…
Read MoreIt Took a Baby…
For the last three years, Sawyer and I watch a movie on Friday nights. We eat popcorn with way too much ranch seasoning, snuggle up with blankets, argue over what movie to watch, and talk about his day, farts, Nerf guns and hockey. It’s my favorite part of the week. And for the last three years, Cooper has ALWAYS been encouraged to join us. He rarely ever does though. He likes to wander around, move from room to room, watch his shows, line up his treasures and stim. That is…
Read MoreThank you for Loving my Son
My son, Clark, was diagnosed with Level 4 Autism, Non-Verbal when he was two, even though as a mom I knew something was different about him around the age of one. Now, he is almost six, but is more on a 2-3 year old level developmentally, and is just now starting to say some words. As Clark’s mom, I decided early on that I would not let society define my son’s potential or his limitations. We started therapy prior to his 2nd birthday in our home, but he wasn’t making…
Read MoreA Normal Breath
I was finally sitting on the couch with a cup of tea when my oldest daughter came downstairs. “Um, Mom, I just walked in on Ellie in the bathroom and she was holding poop in her hand.” Shit. Literally. So this is it, this is going to be the “next thing”. Our new challenge. A new behavior. A new reason to hold my breath. It is the day after Christmas and I feel as though I haven’t exhaled in the last 72 hours. I thought I could finally breathe normally.…
Read MoreDid You Know?
Right now, someone is playing charades, A child, wide-eyed, his voice upward inflected, A voice, but not words, His every desire affected. Did you know every word, Out of every girl and boy, Is not a given, it’s a gift, It’s a little piece of joy? Have you heard the screams ringing in your ears? A longing, disguised in sound. The weight of his need to be known, Bringing his whole body to the ground. Have you felt your frustration tremor just under your love, And wondered when the ground…
Read MoreWhy did this happen to us?
My husband and I often ask ourselves, “Why did this happen to us?” Is there a lesson that the universe is trying to teach us by giving us two children on the autism spectrum? Tonight, I think I figured it out after I attended two holiday parties. At the first party, I finally got closure about losing a friend after she made explicit comments. She thinks my child doesn’t have autism because she is not intellectually delayed and makes eye contact. My child has behavior issues (not autism) and needs…
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