Guest Post
The Hidden Life We Live
Parenting Autism is hard. Parenting Autism during a world wide pandemic and quarantine is nearly impossible. But, first, I need to start with this. For all of my well meaning friends and family who will comment something along the lines of: “You’re amazing and so strong. I don’t know how you do it.” Please. Don’t. I appreciate it – more than you will ever know. But first, I’m far from amazing. Second, I didn’t pick this life. It was assigned to me by some universal random number life generator (that…
Read MoreLessons From A Crisis Schooling Mom
In this time of great uncertainty during the Covid-19 pandemic people are forced to educate their children from home. Some are calling this homeschooling, but in reality, this is crisis schooling. Homeschooling would look much different. Crisis schooling is what we have been thrown into without a choice and forced to figure it out along the way. Some may be enjoying it. Others may be enduring or just getting by. I think we are somewhere in-between. Both Tyler and I are considered essential employees at our jobs. I’m lucky enough…
Read MoreLost in the ‘Possible’
A mum sent me a message earlier, about grief. Grief and autism. It may sound morbid, and it may not be the same for everyone, but this is absolutely a thing to me. When my son was diagnosed, I did cry A LOT, I cried any chance I could really, any time I was alone or any time the kids were all asleep at night, I cried. I guess I still do, only now it’s not the same kind of cry… To be told something so impacting, so unknown and…
Read MoreThe Way He Did Today
Something happened today during our homeschooling session. It’s been five weeks since he last went to school. We have talked about the whole COVID 19 lockdown situation a couple of times since all this started. Today, his teacher sent a new social story and asked me to read it to him. The picture of the school building in the story looked a lot like the school he goes to. As I was reading it with him, I saw that he had started crying. There was no sound, just tears trickling…
Read MoreEvery Part of You
I stand in the darkAt the side of your bedBeckoning your anxiety away Reassuring you I’m here-You’re safeYou’re lovedYou’re not alone Midnight hours tick away The morning will soon greet us I askAre you feeling sickHurtAre you afraid My questions are met with your silenceLeft suspended in the air You fall asleepBut not for longSleep never visits long I’m at the front line Fighting your silent warA war-Locked somewhere deep inside of you Sometimes its not so silent Its loud screamsHiding in small, dark spacesHysteriaHead bangingDangerous Self harmingEloping Isolation Sometimes there is no warIt’s Thomas the…
Read MoreConversations with a 4-year-old About her Brother’s Autism
A few months ago, Charlie, my 4-year-old daughter, yelled from across the room, “Mommy, look!” Her older brother, who doesn’t tend to pay her much attention, was hugging her. She said, “Does this mean he loves me now?” My heart broke. Confession: I am a bit of a hypocrite. I advocate for autism awareness and everyone talking to their children about autism and I really hadn’t done it myself with my neurotypical child. We talk about differences and kindness and why everyone we meet is special, but we hadn’t had…
Read MoreIsolation, Distancing, Learning: We’ve Been Here Before
The world has shut down. We’re under stay-at-home orders. Because of a new virus that can be fatal, we’re forced to stay home until it’s contained. We have to stand six feet away from other people if we go anywhere. We have to homeschool our children because schools are closed until further notice. Doctor appointments and therapy are held over telemedicine video calls. This all seems a little too familiar. I remember how hard it was being stuck inside for extended periods of time. I recall my kids having therapy…
Read MoreWelcome to Our World
Welcome to our world. I have said that a lot lately. While the world has stopped in its tracks not much has changed in our world. This is our life. Isolation. I was thinking about it yesterday and, the special needs community is far more prepared for this. We have been preparing for this for years. We are isolated all the time. For years, the only time we left our home was for work school or therapy. We worked hard on leaving our home. There was a time when Kya…
Read MoreGaining Perspective in my Life
Our lives are so narrow in experience. We understand most clearly the circumstances we are born into and the experiences we acquire over our lifetime. Yet there are so many variables that can shape our lives. Immigrant status, skin color, religion, socio-economic status, ethnicity, gender orientation, disability, addiction, abuse—we are shaped by these factors. Prior to being a mom, I identified as a middle class American Jewish woman. I experienced some religious discrimination in school which left me with a desire to explore diversity. I wanted to make room in my…
Read MoreThe Corner of the Waiting Room
Let me tell you all about how a corner in a waiting room became my home today. I took my son Gianni to therapy for a 1:45 appointment. We arrived at 1:30. When we arrived they said it wasn’t until 2. We are in the lobby. Gianni is acting insane. His body won’t stay in one place. He’s screaming the most highest pitched scream he can manage. It’s a very small waiting room. EVERYONE, and I mean everyone, is staring at us. I tell him to use his inside voice.…
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