Posts Tagged ‘Special Needs Parenting’
The “R” Word
Okay guys let’s talk about something…. The ‘R’ word. You all know the word I’m talking about. I want to ask you a favor…will you please erase this word from your vocabulary? For me. For my darling Oaklan. For every other special needs family in our neurodiverse world. So many people use the ‘R’ word as an off the cuff comment without a single thought to the long term effects it can have on someone. But I’m here to tell you, every single time a special needs family member hears…
Read MoreThe Power of Words
“I’m so tired of hearing about special needs kids. They’ll be fine. They were retarded before Covid they’ll still be retarded after. So let’s just keeps those kids at home and when this passes they can come back to school. Do you really think they’ll be any different after a year of staying home with their parents? Sounds like someone doesn’t want to deal with their special needs kid. Sorry you fucked got pregnant and had a retarded kid. Your problem not mine…” [sic] These words were written on Facebook…
Read MoreReal Joy
Can I tell you about a boy and his secret, amazing world. And joy. He is ten years old. His name is Cooper, although we mostly call him Snoopy Joe. He loves bright colors and snow and music and waving. He also loves Christmas. He doesn’t talk much. In fact, on the paper in my drawer it says he has level three, severe, nonverbal autism and an intellectual disability. There is more too. It’s a lot. He has a file. I don’t look at it much. Only when I have…
Read MoreHe is Made of the Wind
‘It’s a wondrous thing how the wild calms the child.’ – unknown There is something about being outside that makes life better. For all of Cooper’s life, we have made being outdoors a priority. And I don’t mean busy parks or commercialized places. I mean the woods. Fields. Lakes. Deserted trails. See, we tried going where the people were when he was younger. When he was first diagnosed with autism. We tried so hard to make it work. But he never quite understood what to do in those places. If…
Read MoreWhat I Can Control
One of the best pieces of advice ever given to me came from a pediatrician when my third son was 7 days old. I sat in the exam room, dirty hair, bags under my eyes, nipples on fire, holding this beautiful, perfect bundle. And I told the doctor all of my fears. I was worried about my milk supply. My older autistic son adapting to his new brother. Signs of autism in my newborn. Not being a good enough mother to three very unique kids with very unique needs. Failing.…
Read More‘I’m Here Buddy’
Cooper has always reached for a hand to hold when we are in the community. But not just any hand. Typically mom or dad. He likes the comfort of us walking alongside him. Sometimes we lead. Sometimes he does. But he’s always an arms length away. We often refer to him as a little old man. Cautious. Careful. He points out ice and mud and dangerous terrain with a point and a gasp. He likes to lean in for hugs too. Which I soak up. On our walk tonight, my…
Read MoreWe Just Want to Help Our Son
I don’t understand anxiety but I’m trying. Most nights, after my son has fallen asleep, and I’ve tucked him in for the last time, I study his features and listen to his breathing. It is calm. Finally. When he sleeps, his worry is gone. It releases him for a few hours. I am thankful he can rest. Most nights I feel like a failure because I can’t take this burden from him. I can’t seem to fix it. Anxiety is slippery. It is sneaky and seemingly impossible to catch. But…
Read MoreInvisible Threads
Along the journey as a special need mother, we carry so much baggage. From the moment of diagnosis for our child; we immediately pack on the enormous amount of luggage full of worries, expectations, and thoughts of doubt. We see everything that is needed to be done and we begin to think of how we will accomplish it all. We riddle ourselves with self-doubt and become overwhelmed at the thought of another task to be added to our overrun schedules. But somewhere along the way of our journey with our…
Read MoreA Letter to the Struggling Autism Mama
I see you, and I feel your heartache. I understand that every single day is a back and forth balance of finding the joy and grieving the life you thought your child would have. Your days are now filled with therapy appointments, IEP meetings, arguments with insurance and sleep deprivation. You are now leading a team of educators and therapists that you didn’t sign up for, or ask to be a part of. But you know it has to be done. Own your seat at that table, you are important.…
Read MoreWhy Can’t You Be Normal?
Why can’t you be more, well, normal? Have fun for a change! Blow bubbles in the summer breeze and chase waves in the ocean and jump into big piles of autumn leaves. Make friends. Go to birthday parties and sleepovers and on camping trips. What if I can’t, he asked. Try harder, they answered. Try bigger. Try with everything you have. I am trying. I am all the time trying. Be a normal kid. Say hello when someone talks to you. Shake hands. Hug people good-bye. What if hugging makes…
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