Sometimes I feel like two different people living in one body. On the one hand, I’m eager to learn as much as possible about PDD/ASD, parenting a child with autism, treatments, advocacy, support organizations, etc.
On the other – I wish I could bury my head in the sand. I’m scared about the amount of responsibility this places on us as parents – decisions we make now could affect how Jasmine is functioning 10, 20, 30 years from now. I’m scared about having to be tough and strong, and perhaps even bitchy, in order to advocate for her. I’m scared that I may always have to be checking and confirming that the people working on Jasmine’s behalf are, in fact, doing their jobs correctly and giving me accurate information. Being a full-time mother is my comfort zone, but now I’ll be adding so many new facets to my job that it almost seems like a whole new position.
Most of all, I’m scared of the unknown. I have no idea where Jasmine’s developmental path will take her 6 months or 6 years from now. Other conditions have predictable courses – for instance, when my oldest was diagnosed with a bladder condition, physicians were able to explain to me, “This is what’s happening, this is how we will treat it, and if it doesn’t resolve to our satisfaction we will do that.” No one can tell me for certain what will happen in Jasmine’s case. Maybe she will catch up and be fully verbal – but maybe she will stay minimally verbal and rely on alternate forms of communication. Maybe she will learn at grade level, maybe not. Maybe her sensory issues will lessen, maybe they will get worse. For a control freak like me, this is not fun.
I am fortunate. I have a supportive family, I have incredibly understanding and loving older daughters, I have great friends, I have people in the autism trenches who are wonderful resources, and I have therapists who are helping Jasmine make strides. (She said, “Dora,” with her OT for the first time today!) Everything would be much harder without those assets.
I just hope I can be what Jazzy needs me to be – as her advocate, as her supporter, as her therapist/educator, as her time manager… but mostly as her mother. That is who I am above all else. My daughters’ mother. Jasmine’s Mama.