People who follow me make a lot of assumptions about our family and these boys. It’s interesting, funny, even upsetting to read them. People assume that Cooper, and ultimately autism, is a hardship. People assume the younger two are neglected because they see Cooper get attention in a 4 minute video. I could go on and on. We are on a spring break two night vacation. Because flying isn’t an option for us we went to northern Minnesota. The day before we left it was 65 degrees. The day we…
I’ve heard countless stories from parents of adult disabled children about the prognosis and future predictions they were given. And not a lot of them were good. Parents were told to institutionalize their babies. Even, ‘go home, try again.’ And one, ‘forget about this one, have another.’ It was no different for Dick Hoyt and his wife Judy in 1962 when their son Rick was born. Rick was diagnosed as a spastic quadriplegic with cerebral palsy, as a result of oxygen deprivation to Rick’s brain at the time of his…
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…
I’m a firm believer in finding your tribe. For me that is the autism parenting community. In the middle of pandemic this has been an extra challenge. But I never imagined that I’d find my tribe all across the country. I wasn’t in a great place last year when Covid happened. So many things were happening and then all of a sudden the world stopped. During that time I enjoyed the extra hands of help that my husband brought. But being unable to go anywhere made life hard. Luckily, while…
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…
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.…
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…
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…
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…
When we are out in public, I don’t worry about how my son will act. I don’t worry about his struggles or mannerisms. Or his uniqueness. Because I know exactly who he is and how he is going to behave. And that he is learning and growing. I know he will flap his arms in pure joy. I know he will run. And sit. And maybe feel the cool of the cement with his cheek. I know he will squeal. And hum. And laugh. I know he will wave to…
