Guest Post
Sometimes She Teaches Me
My five year old was having a summer pandemic playdate complete with masks and social distancing. It had been a while since we had actually seen other people in-person outside of our immediate family. She was beaming for the first time in six months and was so excited to actually be able to play with a friend. Unlike me, she wasn’t nervous. She didn’t care about the mask. She wasn’t worried about maintaining six feet of distance. She was just so happy to get a piece of normal back. My…
Read MoreThat Old Famous Line
Close your eyes. And just for a moment think back to the most important piece of advice you got when you were younger, on how to treat others. This is mine, and I know you’ll recognize it… We were all told that famous line as children, “if you don’t have anything nice to say, don’t say anything at all”. And yet, I find myself exhaling extra deep when I hear specific hateful, mindless words fall from the mouths of children and adults alike, still, at this day in age. Words…
Read MoreThe “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 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 MoreIs This Our Forever?
Is this our forever? A good friend recently asked me what kinds of things my son Leo was interested in these days? “Toy Story, like always,” I responded, chuckling at the thought of how often I’d responded similarly over the years. For as long as I can remember, Leo has been transfixed by the popular series of films; his love for Sheriff Woody, Buzz, Andy, and the rest of the Pixar gang, have stood the test of time, resulting in a most impressive collection of Toy Story merchandise; from figurines,…
Read MoreOnly in My Dreams
Sometimes it hits me when I least expect it. I was sitting in front of my computer reading my son’s high school athletic Facebook group post. “Any parent of a boy or girl in grades 3-6 interested in volunteering as a water boy/girl for the varsity football team, please respond.” So I went to that imaginary place in my mind. I pictured my daughter on the sidelines holding the rack of water bottles proudly watching her brother and his teammates play football. She smiled excitedly as the whistle blew and…
Read MoreDo You See Us?
Do you see us? We are the parents who have always parented in an altered universe, and now we are being asked to live in yet another altered universe with no end in sight. Do you see us? We are the parents whose children highly depend on structure and routine to feel secure and safe and less anxious. We are the ones who need a multitude of people to support our child’s ability to learn, to play, to speak, to toilet, to eat, to walk, and to participate in the…
Read MoreMy Husband, We are Perfectly Imperfect
My Husband. I love him with all my heart. Every fiber of my being. I have loved him since I was 16 years old. I don’t really know anything else. And to be honest, sometimes I don’t even like him. We don’t see eye to eye on many things. We fight a lot. He doesn’t think the the things I think are important matter. At all. And frankly, it irritates me. Can’t he pretend to go along? He will humor me, but still, not happily. We have never had a…
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