Posts Tagged ‘nonverbal autism’
A Letter to My Nonverbal Son
My sweet little Isaac. You can’t tell me you love me, but you sure show it. You don’t sing the words to songs, but your loud humming makes me laugh. I want to tell you I’m sorry though. I’m sorry you get frustrated because you can’t tell me things. I’m sorry for the bad days I have when I hate autism. I’m sorry the world doesn’t understand that you need patience and acceptance. But I’m so proud of you. I’m so proud that you can wave to me. I love…
Read MoreHopefully Hurting
Another time comes that I must leave you behind so you can continue working on getting better; that raw pain in my chest returns, feels like I’m suffocating, like I can’t breathe. Sometimes I think my heart could actually break. It’s a stabbing pain that with each breath is more intense than the last. It feels like I’m carrying a ten thousands stones in my bones that with each step gets heavier. A million little things race through my mind. Razor blades cover my throat that I feel small cuts…
Read MoreSeeing their Future
These two. Brothers. Cooper was barely two when Sawyer was born. I had so many ideas of what their relationship would be like. So close in age. I thought they’d be best friends. I thought they’d play nonstop. Like so many parts of life…what I imagined didn’t happen. Their relationship has always been unique. Lots of ups and downs. Lots of confusion for Sawyer. Cooper is mostly oblivious to him. They rarely interact. They seem to lead separate lives but do acknowledge that the other one seems to live here…
Read MoreI’ve Never Heard I Love You
My son is eight. And he’s never once said I love you. He can’t. And maybe he won’t. He doesn’t know how. And maybe he doesn’t want too. There are so many reasons why or why not. I don’t know the exact one. I just know that I would give anything to hear it. He has autism. And he’s nonverbal. He also has Apraxia. Add all three of those reasons together and hearing the three words, I love you, can feel impossible. I actively waited for a long time. I…
Read MoreUnderstanding Self Injurious Behavior
To the autism families that are just learning about Self Injurious Behavior (SIB): I know you’re scared. I know you’re sad. I know you’re mad. I know you’re confused, so confused. Guess what, that’s ok and you’re not alone. We began our journey of SIB on August 14, 2016 my son was 4 years old. My son Deegan was diagnosed with Autism clinically (ADOS) at 22 months old, on September 18, 2013. We began to see “signs” when he was just 13 months old and he began early intervention, speech,…
Read MoreOur 2018 Year in Review
A year ago we had a different life. We were living in a different house. We had two children…not three. Cooper had just turned seven. Sawyer had just turned five. And we had just found out that we were pregnant. This site was smaller. I had 60,000 followers on Facebook. Then I had a super viral video. I received my first round of online bullying which opened my eyes to how ugly the world of the internet can be. And today we are 430,000 strong. Cooper had six months of…
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 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 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…
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