Guest Post
Even in the Dark, You Are Not Alone
I’ll sit with you in the dark, when you know, but you have to wait. Wait for others to believe you. Wait for insurance approvals. Wait for evaluations. Always waiting to hear what you already know. I’ll sit with you in the dark when you feel alone. When others tell you they’ll pray for you. When they tell you stories of how they know someone who knows someone. When they tell you that God gives special kids to special people. When they tell you, “but they’re so cute” or “they’re…
Read MoreWe Will Sit in the Dark Together
I can remember when the first signs of autism started popping up. I was in the dark. I did not know anyone who was going through what I was going through. I did not understand how to help Kyle and how to feel. I did not know which direction to go in. I was completely alone and in the darkness. I would sit in the shower and close my eyes. I could feel the water dripping down my face washing away the tears. I could hear the water pounding against…
Read MoreMy Son is Not Failing; Your System is Failing Him
They said, “your son has the highest needs of anyone in the school”. And as a mother, what I heard was, “your son is the most challenging child we have”. Like an almost “admission of irritation” on their part; Or so it felt. That statement wasn’t necessary. In a meeting that I called; me, myself, as a concerned parent, as a special needs Mother, those words didn’t need to fall from anyone’s lips. Because it’s a statement made without a practical solution. Unnecessary. “Your son has the highest needs of anyone…
Read MoreAwareness Days Shouldn’t be the Only Days We Talk About Disabilities
Today is World Down Syndrome Day. I am going to make a statement that I know is controversial. People may come at me in the comments. But anyone that knows me knows I am honest, sometimes to a fault. I hate disability awareness days. Wait. Before you take your shock and disgust to the comments, let me explain. I have built my career, my character, who I am and what I stand for, on advocating for those with disabilities. All individuals with disabilities. Not every disability has an awareness day.…
Read MoreAutism Representation – Daniel Tiger to Introduce New Character
I can vividly remember taking my autistic son, Johnny to the park when he was four years old. As I pushed the double stroller with him and his baby sister through the park entrance my heart sank as our usually pretty empty park was full of children and parents. Johnny was excited, and there was no turning back. I had to let him play for at least a little while. As he darted off to play I quickly strapped the baby to me and followed him like a shadow. Sometimes…
Read MoreA Glimpse of Autism in the Year of Covid
I’ve been replaying the past year in my head over and over a lot lately. A whole year consumed by covid. What a whirlwind. What a ride. This crazy virus consuming a large portion of our time and energy. It’s been fast and it’s been slow. There has been so much confusion intermingled with delicate moments of pure clarity. It’s been a year of more anger and separation in our world, yet one of so much love and community. There’s been stress. Anxiety. And so much change. Pivoting on a…
Read MoreIt’s Not That I’m Not Happy For You
I need to be real for a minute. It’s not that I don’t want to be around you. It’s not that I don’t like your kids. It’s not that I don’t love watching your kids grow up from afar. It’s not that I’m not happy for you. It’s just too hard. It’s too hard to see your children developing at a normal rate. There’s no speech and language delay. There is no vocal stimming. There are no show stopping meltdowns. You have kids who have a typical path to follow.…
Read MoreAutism is Not Always to Blame
From as far back as I can remember, Skyler has always expressed himself by using his hands. The most common of his ‘gestures’ is open hand smacking of walls, cupboards, doors, counters, people, etc. Basically, if he could reach it, he would hit it. Hair pulling was his second favorite method of contact. Oddly enough, it often wasn’t done to gain the attention of the person on the receiving end of his torture, but simply because he liked the texture of the strands of hair between his fingers. What began…
Read MoreErase The Word
There are many things that you start to realize when becoming a mother to special needs children. You learn all in the ins and outs of your child. You learn how to survive from day to day. You learn all the official terms and acronyms…..IEP, BCBA, PCA, TSS, OT, PT, self-contained, inclusion, etc. You start to realize some things that were not even thought twice about, earlier in life. I started to see really quick how the world views people in the special needs community. I see how the world…
Read MoreBittersweet Birthdays
My son’s birthday is this week and I am planning a party for him. He will be 14 years old and we are having a Sesame Street themed party with an Oscar the Grouch cake. The party guest will be me, his dad, his younger sister, and his grandmother. That is his limit. More than four very familiar people will overwhelm him. This is what birthdays with severe autism and developmental delay look like for us. When my son was born, I had several friends who had baby boys around the…
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