The Life of an Asperger's Parent
5:22:00 PM Posted In Asperger's/Autism , Gavin , Parenting , Stressed/Exhausted , Vent Edit This 0 Comments »
I love my son, Gavin. I love him with all my heart. Sometimes I just wish he were "normal". I wish I didn't have to hear "I just said 'T' 'B' 'Y'" like it was the most amazing thing ever. And then to hear that same sentence over and over and over again. It's just too much some days. Rob sent me an article on Autism written from the parent's POV but I can't bring myself to read it because it just hits too close to home.
I wish for the child I had at first. The sweet, sweet little boy who could make sense of the world. I long for the days before we had pediatric developmental neurologists, occupational therapists, speech therapists, physical therapists, psychiatrists, psychologists, and special schools. I long for a week without an appointment. My weeks will never be empty again. Gavin will always have one appointment or another. I long for time to myself. I long for a day without stimming - stimulating behaviors he uses to try and self-soothe...flapping his hands as if he's trying to take flight, repeatative clearing of his throat, saying the same sentence/word etc over and over again, tapping his fingers, bouncing/rocking in place etc.
Most people who know me will tell you that I am far from "normal" myself. And I usually loath normal. I am all about individuality, sense of self, marching to the beat of your own drummer...yahooie kabluie. As much as I hate to say this, I wish he could just be NORMAL. Sit quietly. Not respond to everything with a major melt-down and fit. Not pull his hair out over the smallest slight. No more stealing and hoarding food. No more "fighting" with the insurance company over specialists and services that he needs but most kids don't so they don't automatically cover them. (I put fighting in quotes because it's not so much a fight as an obstacle coarse trying to get through the red tape in the proper order.) No more guilt for playing favorites as a mother because honestly, Elliott Richard is just so much easier. No more guilt over things I'll never have answers for - did my actions those first 8 weeks of pregnancy (before I knew I was pregnant) cause this? If I had never married my ex-husband and Gavin had never seen the D.V. would he be this way? Did I not love him enough? Did I coddle him too much? WHAT IF?!
I want normal. I want to not have to schedule every moment of every day for the rest of my life. I want to not have to live by prescriptions and doctors appointments. I want to put him to bed and a half hour later he's asleep and he stays asleep until 8 or so the next morning. He doesn't wake up at 3 am with nightmares and play with toys quietly because he's up for the day but knows we need a few more hours sleep. I want a break. I want someone to care. I want someone to understand. I want someone to tell me it's not my fault and we aren't going crazy. I want to be someone else for a little while but every time I try to change my name - Gavin flips out and demands I become "mommy" again. *sigh*
I wish for the child I had at first. The sweet, sweet little boy who could make sense of the world. I long for the days before we had pediatric developmental neurologists, occupational therapists, speech therapists, physical therapists, psychiatrists, psychologists, and special schools. I long for a week without an appointment. My weeks will never be empty again. Gavin will always have one appointment or another. I long for time to myself. I long for a day without stimming - stimulating behaviors he uses to try and self-soothe...flapping his hands as if he's trying to take flight, repeatative clearing of his throat, saying the same sentence/word etc over and over again, tapping his fingers, bouncing/rocking in place etc.
Most people who know me will tell you that I am far from "normal" myself. And I usually loath normal. I am all about individuality, sense of self, marching to the beat of your own drummer...yahooie kabluie. As much as I hate to say this, I wish he could just be NORMAL. Sit quietly. Not respond to everything with a major melt-down and fit. Not pull his hair out over the smallest slight. No more stealing and hoarding food. No more "fighting" with the insurance company over specialists and services that he needs but most kids don't so they don't automatically cover them. (I put fighting in quotes because it's not so much a fight as an obstacle coarse trying to get through the red tape in the proper order.) No more guilt for playing favorites as a mother because honestly, Elliott Richard is just so much easier. No more guilt over things I'll never have answers for - did my actions those first 8 weeks of pregnancy (before I knew I was pregnant) cause this? If I had never married my ex-husband and Gavin had never seen the D.V. would he be this way? Did I not love him enough? Did I coddle him too much? WHAT IF?!
I want normal. I want to not have to schedule every moment of every day for the rest of my life. I want to not have to live by prescriptions and doctors appointments. I want to put him to bed and a half hour later he's asleep and he stays asleep until 8 or so the next morning. He doesn't wake up at 3 am with nightmares and play with toys quietly because he's up for the day but knows we need a few more hours sleep. I want a break. I want someone to care. I want someone to understand. I want someone to tell me it's not my fault and we aren't going crazy. I want to be someone else for a little while but every time I try to change my name - Gavin flips out and demands I become "mommy" again. *sigh*
