Last week, a little boy, who is autistic and nonverbal, died. The story rocked the world of every parent who has a child with special needs. I shared a few updates as it was unfolding and was saddened to see the hate that emerged. Some comments were curious. Many were confused how this could happen. And everyone was heartbroken. I want you to know I know nothing more than you do. I know what I see on the news. That is it. But what I do know is the seriousness…
To my wonderful son, When you were born, I knew I was going on another adventure in motherhood. I didn’t know that you would make me a much different person than I was then. You learned how to talk at 15 months, gave the best hugs and kisses ever, and started getting into everything you could. By the time you were four, you had already broken your right foot and left arm, had stitches and a small concussion. Your pediatrician called it the “trifecta of childhood”. Along with the adventures…
I read a quote today by Shakespeare. “I cried when I had no shoes, But I stopped crying when I saw a man without legs…” Wow, did that hit me hard. I want you to know that I was devastated when my son was diagnosed with autism. I am a big enough person to admit that. I couldn’t understand how or why. Why him. Why our family. Why. And, I even knew it was coming. I’d done my research. I saw the writing on the wall. He wasn’t talking at…
When I think about my experience with autism so far, there are a few moments of awakening that really stand out. One of those was Johnny’s second birthday. We had known about his autism for four months and, naively, I thought that the ups and downs we had experienced since that time meant we were “through” the acclimation phase. I thought that we were already prepared to settle in to our altered version of normal. That day, we drove over an hour to meet with most of our family and…
One of my missions with this page is to give a glimpse inside our beautiful, unique world with severe, nonverbal autism. This photo is a perfect example. His mind is amazing. Cooper is absolutely in love with family photos. He even uses them to communicate. Thankfully, over the years he has relaxed a bit around them too. He used to take them out of frames, take them off the wall, even break the glass. Now, he just gathers them up, carries them around, spreads them out, studies them, shares them…
I promised I would give a weekly update on our journey with medical cannabis for our severely autistic son. We are 28 days in! In Minnesota, medical cannabis was legalized for autism in July 2018. The program is regulated by the state of Minnesota. You can read more HERE about how we got started. Want to know if medical cannabis is legal for autism in your state? Click HERE. After getting a prescription from his doctor and jumping through all the hoops, we started him on the lowest dose possible.…
Max Richard is my son. On November 7th, 2012, he was officially diagnosed with Mild Cerebral Palsy. At the time, it was like the life had been taken from my body. Like a dream I couldn’t wake up from. Max began to make improvements with therapy but as of August 16th, 2013, he was not talking. Flash forward to today. He is still not talking. Things have changed in our life. I got new job. We moved. Max has a baby sister Samantha. Still no talking. I’m not going to…
Most of autism has been a guessing game. I don’t know why my daughter has autism. I guess if could be: Genetics Environment Early birth Or the crop duster that used to fly over my house I haven’t the faintest idea why some days she is so happy and other days crazy with rage. I guess it could be: Hormones Inflammation Weather changes Who knows why she can sleep for four nights and then is up again for three? I guess it could be: Something she ate Something she dreamt…
One thing I’ve learned in my work with children and families across the globe is that no two families or children are alike. Every time I think I have the secret sauce for helping a tantrum-prone child with autism in Germany, Japan, Texas, or Ontario, I’m humbled by the reality that what works well for one family may fail miserably for another. Over many years of clinical work at Boston Children’s Hospital and in private practice, I’ve come to the conclusion that a “one size fits all” approach simply doesn’t…
The first day I realized my baby boy was autistic is one of those days that will forever be etched in my memory. Like the day my husband and I found out in the ultrasound room that our baby was a boy, or the night we walked together on our favorite trail while I was in labor with him. My husband sang to my stomach to let Johnny know he was loved, and that we were waiting for him on the other side of the dark. I remember it like…
