My mother used to say that babies should sleep through the night when they are 10 pounds or 10 weeks old. Our first son Daniel was a great sleeper, and so it went. We checked off that box, followed by the boxes for rolling over, sitting up, crawling, and walking. He had some words by 18 months, but then seemed to lose them. Along with this came some tantrums, solitary play, and other behaviors that gave us concern. Daniel was diagnosed with autism and we were then blessed with a special needs preschool that would change his trajectory and bring him back to us. Early intervention for Daniel was amazing. He is now a 25-year-old man who has graduated college with a degree in Music Therapy, and works delivering music services to special needs clients all over the Hudson Valley. We decided Daniel should have a sibling in this world, so 5 years later Matty was born. Where Daniel showed early signs of autism, Matty was social, chatty, and we again checked of the boxes. We got to 3-word sentences, colors, numbers, singing songs, and parallel play. Matty was 2.5 when he began to lose skills, words, and his ability to have a full night’s sleep. We forgot about the boxes and realized he was regressing at a rapid pace. The last words Matty lost were Mommy and Daddy. Matty was diagnosed with autism at 3 years old, and attended the same special needs preschool as his brother Daniel.
Matty was not able to make the gains as Daniel did, and we spent years taking him to DAN doctors and used every available strategy out there to “bring him back.” I can say now that Matty’s mission in his life is to be who he is. That has taken many years for his dad and myself to embrace, but everyone who takes the time to get to know Matty understands. His presence is his mission.
Matty was put on many different medications over the years, first for his sleep disorder, and then for behaviors. When Matty was 16 years old, we made the decision to place him in a safe, secure environment, a residential school. He deserved to be where he could be cared for 24/7 by people who were the experts. We were fortunate enough to have him be accepted by the Anderson Center for Autism in Staatsburg, NY. We live only 30 minutes away, and Matty comes home most weekends to spent time with us, and sleeps over in his room. When Matty goes to sleep, I love to watch his peaceful face. I know he is resting his otherwise non-stop moving body. The world stops for me, as he is taking a break from the day, where he has to navigate everything we take for granted.
I had the pleasure of being interviewed by Lisa Genova years back, author of Still Alice and Love Anthony ( a novel about a child with autism), who wanted to ask me questions about raising a nonverbal child with autism. The question she asked me that still makes me smile today was, “how does Matty let you know he loves you?” What came to mind immediately was when Matty is sleeping, and I lay down beside him, he will find my hand in the middle of the night and holds it, that’s how I know. He still does this at 20 years old.
As I’ve said, I love to watch Matty sleep.