My Fears for My Autistic Daughter

There are so many things I worry about when it comes to my autistic daughter. Raising a vulnerable child comes with so many fears. Some of these things are things we all worry about.  I have four children and I worry about them all.  The intensity and degree of worry when it comes to Alyssa is so intensified. My biggest fear is what will happen when I’m gone. This brings me to my knees, it terrifies me.  Me and autism have long battled with control. I like control and so…

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What a Difference a Covid Year Makes

An old friend called me this weekend to check on our family. The discussion turned to the past. When Emily was a toddler, she was easily overstimulated by sounds or crowds. We were having dinner at their home and at some point Emily “lost it”. She was crying and inconsolable. The only thing that worked was to drive her around and play a Wiggles CD in my car until she calmed down. I missed most of that evening. A few weeks later Emily got upset when I was covering a…

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‘The Reason I Jump’ Film Gives a Platform to Discuss Nonverbal Autism

Have you watched this film yet? When I heard that they were turning the best-selling book ‘The Reason I Jump’ into a full-length documentary film I was SO excited. For those who haven’t read the book, yet, it was written in 2007 from the perspective of a nonspeaking 13-year-old boy, Naoki Higashida. The book was later translated to English which made it rise in popularity even further! I gave it a read after seeing Jon Stewart mention it when he was the host of The Daily Show. The 82-minute documentary…

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A Story That Changed My Life

A few weeks ago I had the honor of chatting with Peri of Not Raingirl. Peri is one of my most favorite humans on this earth. She is also an autism self advocate. She was diagnosed as a young girl and now shares her memories, learnings, and feelings with the world. Essentially, she is a guidepost for parents who want to listen and learn. When we spoke last, she told me a story that changed my life as a mother to an autistic child. In the story, she was referencing…

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I Know What It’s Like to Sit in the Dark

As a child I always felt different. I had some dolls and Barbies but I never played with them. I’d rather have them set up or put new clothes on them. But I never played with them. I remember first grade, my best friend was sick and ended up dying from a brain tumor. I cried a bit but the day I went to school I didn’t shed one tear. The rest of the class was sobbing. I couldn’t understand why some kids were crying because they didn’t even like…

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Will This be Our Forever?

My son, I’m waiting to read you your nightly story, like I do every night, like I have for years. You still play with Thomas The Train and watch childlike videos. You still need to be bathed just like a young child. I wonder if I’ll do this forever or if one day you’ll grow up. You see, you are actually all grown up physically. You’re a grown up 20-year old man but cognitively…well, that’s a different story. I know some things will change, but what I don’t know is…

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Celebrating Autistic Women and Autism Mothers for Women’s History Month

Without the voices of strong autistic women in our community and the support of women like my mom, I wouldn’t be the person I am today. I was recently contacted by an autism mom who told me about her 30-year-old autistic daughter who is about to have a baby. She said that she was proud of me for using my voice as a public speaker and self-advocate to spotlight others. If you are reading this, I don’t know why, but this instinctively made me think of Women’s History Month and…

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We Are All Worthy

Erase the word. Wouldn’t it be nice if it were that simple? There are certain words that have such a negative impact. Words that describe race, sexual orientation, substance abuse, and disabilities. As a parent of a child with special needs, I want to talk about the stigma of the derogatory word used to describe people with mental disabilities and the word that is also used as slang to make fun of others, in reference to them being stupid. I clearly remember sitting across from the psychologist as he was…

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My 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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Don’t Forget About the Special Needs Adults

I’ve heard people refer to special needs kids as the “forgotten ones” during this global pandemic.  They cannot do virtual school, computers don’t make sense to them.  School is school and home is home.  You don’t do home at school, and you definitely don’t do school at home. Toddlers with special needs desperately need the social skills and therapies in order to learn, or in some cases learn how to learn. Older students desperately need vocational and daily living skills in order to be ready to leave school. These things…

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