Parenting is hard. I think we can all agree on that. You are raising a tiny little human from birth to adulthood without an instruction manual and silently praying they turn out sane and happy. Now imagine if that tiny little human has a diagnosis of some sort. Autism. Cerebral Palsy. Traumatic Brain Injury. The diagnosis could be physical, emotional or neurological. It could be obvious. Or maybe it’s invisible to the outside world. Scary right. You aren’t a doctor. Or a therapist or a physiologist. There is no instruction…
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My little peanut, Today is your fourth birthday bud. How can that be? I look at you running and jumping with your friends and it’s hard for me not to cry. You are amazing. I am so proud to be your mom. I need you to know that. I want to tell you a few things. I know you won’t understand them now. And that’s OK. But someday, when mom is old and grey, I want you to read this letter. I want you to know I am sorry. And…
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Before my son was diagnosed with ASD I would frantically search out stories, blogs and articles of hope. Stories where it turned out NOT to be autism. Stories where instead of autism the child was actually deaf. Or allergic to gluten. Or whatever. These stories had happy outcomes. I did this because the stories of autism-to-life scared me to no end. I wasn’t ready yet. Then he was diagnosed and even more ferociously I searched for stories were the child was cured. The child had autism and the parents started…
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I shared a video last night on Facebook and I can’t believe the overwhelming support I’ve received.Thank you to every single person that messaged me or left me a comment. Just reading the words, ‘I understand,’ is more therapy than I can describe. Knowing that people out there understand is amazing. It makes me feel less alone. So, what was the event that caused my crash? Well, we had an evaluation for Cooper yesterday at an autism center. I am looking for options that will replace public education. I am…
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Hey all, One question I am continuously asked is what kind of diapers we use for Cooper. He is a big boy weighing in at 60 lbs. He currently wears a size 7 diaper. Cooper’s diapers are covered by his Medical Assistance. As far as I understand, and this may vary by state, a child with an autism diagnosis who is covered under medical assistance gets free diapers after the age of four. That’s what I was told. We had to figure this out for ourselves. Meaning a fellow parent…
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I am sitting here thinking about our relationship and about how much I love you. And how I rarely see you. We joke that it’s because life is so busy. We are in our thirties and have jobs and babies. We are in that stage of life I guess. We are always saying that this is the month that we will finally find the time to get together. And when this month passes we will laugh via text and joke about how someday soon we will have more time. One…
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I just changed my six year old’s diaper. It was messy. There was poop dripping down his leg. It was on his jeans. His socks. The poop got on my hand, couch and carpet. As I was changing him he gave me a swift kick to the groin that took my breath away. This is the side of autism that no one talks about. I almost started to cry. I’ve been awake since 3:30 am. I haven’t slept through the night in months. I’m exhausted. And I let myself think,…
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I am very vocal about the stress that goes hand and hand with being an autism parent. It’s a topic that isn’t always talked about. I want to change that. Autism is hard. Unbelievably hard. I have post-traumatic stress from it. For one it’s often extremely loud. For me it’s Cooper’s screeches mixed in with the constant sounds coming from his devices. And my little guy loves it LOUD. Really LOUD. I’ve tried covering the speakers with tape. He rips it off. I’ve tried headphones. He refuses to wear them.…
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I often think of my son’s autism as a journey. A journey with many, many steep mountains. 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 am going backwards. It’s just me against this damn mountain. And it feels like there is more bad weather…
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Sharing on a tough topic this morning. I’ve been scared to share this video blog because it’s very real and raw but I know that other parents need to hear these words. It’s OK to be sad. It’s OK to admit that it’s hard. And it’s OK to grieve all the things you won’t do as a special needs parent. You are human. https://www.facebook.com/findingcoopersvoice/videos/792431380899325/
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