You want to know what makes my butt twitch? Well, I'm going to tell you anyway. When people look at me and say (referring to Isabella), “She doesn't look like she has autism.” I have tried to give people the benefit of the doubt – they aren't educated, so they don't know that disability doesn't have a “look.” I want to be diplomatic, but sometimes I just want to say, “You don't LOOK stupid, either!”
Here's the thing – chronic illness and disability don't have a type. That's often why it makes it so difficult for people to empathize with our situation. I have had people very close to me tell me that I play a victim in regards to Isabella's autism, implying that I feel sorry for myself (I guess). Besides being one of the most hurtful things you can say to a person who is raising a child with a a disability, it just isn't true.
Almost two years ago to the day, Isabella was diagnosed with mild, classic Autism and Sensory Processing Disorder. She is high-functioning, which means she has an average or better IQ and not mentally disabled, nor does she have a learning disability. Her diagnosis was no surprise – I had known it myself for about 3 months prior, we were just waiting for the official code – 299.0
I remember as if it were yesterday. It was just me and Isabella in the doctor's office – at that point she said very little and didn't respond to much, stared off into thin air. Her neurologist and I talked about her as if she were a cardboard cut-out; she did not engage in any conversation. It felt so casual on the outside, you know? He diagnoses kids frequently – heck, maybe even daily. On the inside, however, I was crumbling. I was fighting so hard to not sob in his office in front of her, not even fully understanding the breadth or extent of how drastically different life would be from that day forward. Isabella, me, and Nick - our whole family – we all became victims that day, not by choice, but random selection.
On that day, and certainly many to follow, I grieved the loss of the dreams I had for my first-born daughter. But, also on that day, I vowed to kick the shit out of autism and made a promise to Isabella that I would never let her down, that she wouldn't fall prey to this disorder. I never once laid down or gave up. I quit my job to home-school her, I put her in aggressive occupational, speech and language therapy, I changed hers and mine entire food diet, I put her on a sensory diet, I researched till the wee hours of the morning, I read tons of books, I changed her schedule, I rocked her, I held her, I gave my life to her – I did everything she did to feel the effects she felt, to understand her body better. She spent a year in a charter school to learn social and self-help skills. I have lost hundreds of hours of sleep, I have grown thousands of gray hairs and gained many stress wrinkles, but I have NEVER once played a victim.
Nick was diagnosed with Type 1 Diabetes just a few short months before Isabella was diagnosed. He doesn't look like a guy who has to give himself insulin shots four times a day. When he first was diagnosed, he was dangerously close to a diabetic coma. It took months to get his blood sugar under control and it takes careful monitoring and proper administration of insulin, impeccable control of diet, low stress levels, and regular exercise to keep it stable. If he strays from it just a bit, it will take days for him to recuperate. But, if you look at him, you wouldn't say he is fighting a chronic disease. You can't tell that he has scar tissue on his body from constantly having to inject himself, you can't see that he has lost feeling in his fingertips from checking his blood sugar. But, he DOES.
Just like Nick, Isabella is in treatment. With her treatment, she has improved – immensely. She doesn't look like she has autism. But, that is the point! We want her to get well. I don't want my child, nor does any other parent of a child with autism, rocking in a corner, flapping her arms for the sake of people being able to identify with you. And, don't think for a second that she hasn't, or will go back to stimming if her treatment isn't under control. With our experience and with our own education and dedication to her, we all have learned to cope. But, everyday we are challenged; every day she struggles.
So, when you say, “Golly, gee, Bethany. She doesn't look like she has autism. She's gonna be just fine,” its you implying that you don't believe me. And three years of challenge flashes before my eyes, and I just sit there, lip shaking, thinking “but, but...but, but....ARE YOU PAYING ATTENTION!!!”
Instead, I smile and nod, and pray silently that you'll be right.
*Note: Since her diagnosis, Isabella has not taken a single dose of synthetic medication. Not one prescription, no over the counter drugs. She is detoxing all the pharmaceuticals and vaccine effects; she is recovering through dietary restrictions, high-dose vitamin supplementation, amino-acids, minerals, therapy and conditioning. The only thing she sees a doctor for is blood draws to monitor her metabolic panels, blood counts and electrolytes. I have prescribed every single thing she has done through education and research, and she has never been healthier. So go ahead and tell me I'm playing a victim. You obviously need a new dictionary.