So there's this book called "Just Take a Bite: Easy, Effective Answers to Food Aversions and Eating Challenges!" by Lori Ernsperger, Tania Stegen-Hanson, and with a forward by Temple Grandin. If you don't know who Temple Grandin is, she is an autistic woman who is a Doctor of Animal Science at Colorado State University. She is also a published author of many books and has done extensive work raising awareness of and is an advocate for autism. Lori Ernsperger is a PhD and Tania Stegen-Hanson is an occupational therapist. All three women have dedicated their lives working with children with special needs. This book is the first book helped me to feel that it wasn't my fault that Gracie wouldn't eat.
Before that fateful day when, at age 28 months, Grace "changed" she was a relatively good eater. She liked most foods. She ate pasta, fruits, vegetables. She liked lasagna, and banana, and milk. By the time she was three her diet consisted of Honey Nut Cheerios (dry), McDonald's chicken nuggets, water, and an occasional cracker.
As a mother there are some things that we want more than anything to be able to provide for our children - love, a nice home, clean clothes, and nutritious, fresh, healthy food - preferably home made. It is just wired into us as women. It seems to be the ultimate affront when our children refuse this from us. The feeling of failure was overwhelming for me. Not only did I feel like I was doing something terribly wrong, I was certain that she was going to have permanent brain damage from her awful diet, if she didn't already. Family members who didn't know any better would look disapprovingly at me, muttering under their breath, wondering why in the world I would let her eat whatever she wanted - why couldn't I just discipline her like I should?
Here's the problem. Children with either autism or OCD or Sensory Processing Disorder need to actually relearn how to eat. They don't respond to the same strategies that we can use with "normal" children. You can't tell a child with OCD or autism to "just take one bite". You just can't. It won't work. Not ever. These children don't follow the same rules. The thought that "If they get hungry enough they will eat it" simply doesn't apply to these kids. Here's the truth. Kids with autism or OCD will actually starve to death instead of eat the food you are trying to get them to eat. It's true. They will end up in the hospital. They CAN'T DO IT. Imagine the most horrible thing in the world on a plate. Something too awful to even say. Now imagine that someone just told you that you had to eat it. That's how these kids feel. I know it seems strange, but it's the cold, hard truth.
That's what I realized when I read this book. It was both horrible and comforting at the same time.
This is what Grace would do at dinner every night. Most nights we couldn't even get her to walk across the kitchen floor to the dinner table. Usually we had to carry her. She would scream the entire way. Once we got her to the table she would panic and refuse to sit on the chair. We didn't know at the time why she wouldn't sit because she couldn't tell us. When we would finally get her buckled into her chair we would put her food in front of her. Then the panic would start. We would put the food we had on her plate and also put a few Honey Nut Cheerios on her plate. She would panic. If we asked her to take one bite of something it was like we had asked her to eat a bowl of worms. She would shake and scream and try to run away. There was simply no way we could get her to eat. This happened every single night. We tried everything. We bribed her, we punished her, we ignored her, we cheered her on, we tried every strategy there is. Nothing worked.
The first time I had any ray of hope was when I read the book.
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