We don’t look like we need help. I’ve spent the last hour bouncing from site to site filling out pre-screening applications for financial support. It’s the same story we face everywhere we go and with everyone we call: with our income, we “shouldn’t” need help. We “shouldn’t” have debt we can’t stay on top of. We “should” be able to afford the enormous medical and community support we need to provide for our child and still take care of ourselves and our other children.
Noah doesn’t look like he’s autistic. By all accounts, he looks like a disagreeable, “spoiled” child. But he’s not. He’s not simply “oppositional” either, as his doctors keep irritatingly labeling him despite diagnosing his autism. Yes, he is capable of communicating extreme displeasure in a highly articulate and offensive manner. That’s how he protects himself from the big, bad world. That is him struggling because life asks too much. There is a difference between disagreeing for the sake of doing so and inability to function agreeably because you are overwhelmed due to your neurological setup. I recognize that the general population chooses anger before curiosity, but I don’t understand why he is getting this response from a specialized medical team who selected us for their program because he fits it. Doors. Slamming. All over the place.
I exist full of hope and certainty that things will work out until I seek help from the state. After a single hour, I am deflated. So many people send us resource after resource and I follow through on all of them only to be turned away over and over. There is no help for a family like ours. I wish people would stop sending me these dead end links. I wish they would send me lawyers who knew how to make this work for us, or checklists that tell me step by step how to get the help I have spent countless hours and phone calls and in-person appointments seeking. I’m tired.
I should be happy right now, but I’m seriously bummed. I want to go somewhere dark and cry. I’d planned to write a joyful post today on something other than autism or trauma. I wanted to record a happy memory, but this fruitless gathering of potential resources has exhausted me. My brain keeps trying to take me to that horrible place of comparison, to convince me we are just a drop in the global bucket. Less than a drop. We don’t even matter in comparison. We should just shut up. A woman told me that a few days ago. Even though her words were compassionless, they are rolling around in my head like dice. Along with the words “fuck that.” I’m not doing this for me. This is for a child. What I’m working to offer Noah is the minimum all children deserve. And when I am done working for him, I will go back to working for the world’s other children in need.
Despite Noah’s immense achievements yesterday, I almost disconnected. I spent the day fighting to “stay.” It’s still happening. I don’t want to fall into my anxiety again. I want to be here, be present, feel happy about all the amazing love we are receiving. But all these walls have bruised me. I don’t want to seek out new paths anymore. I’ve fallen into Disney mode; I’m wishing for a rescue.
But the next step for us is a bake sale. So I will be putting my introversion aside for quite awhile longer. When this is over, I may never use the phone or join a group again. I am doing this for my child. I remind myself of that each time the pain starts building. I can fake extroversion as well as the next girl, but it hurts. Having children frequently means existing outside your safe space. There is no way to be prepared. There is only do.
*If you would like to host a fundraiser on Noah’s behalf, please let me know. I will support you in any way I can.