Life in a Special Family

Yesterday morning, as Steve was putting his coat on to leave for work, he carefully explained to Ian that a woman's breasts should not be called "bongo drums." Instead, they should be very respectfully referred to as "head lights" or "hooters." 

Scan0001Our family life is very different from other families, because we have a kid who is very different from other kids. We adore our kid and love, love, love his differences. His artwork blows my mind. (This is his concept for the best video arcade in the whole world.) Even the parts of him that are considered disabilities, such as his unusual use of language, cracks us up. If there was an operation that would make him average, I probably wouldn't do it. I like him the way that he is. 

However, there's a whole lot that goes along with having "a different kid." That stuff I could do without. 

On Tuesday, I mixed up sandwiches in the lunch boxes. Jonah got Ian's plain ham sandwich. Ian got Jonah's sandwich with the lettuce and the mustard. At 9 am, I received a call from school informing me about my mistake. The school doesn't have a cafeteria, and Ian couldn't go hungry. I drove to McDonald's, got a happy meal, dropped it off at the school, then drove home. (2 hours) I threw in a load of laundry and bought food for dinner. (40 minutes.) Then I drove back to Ian's school, waited in the cold, texted Jonah to make sure that he got home alright, drove Ian to speech therapy, observed the new therapist (terrible), drove home (4 hours). That's a full time job. 

On Wednesday, I traded phone calls with Ian's case worker. After lots of thought, I decided to dump the new therapist. After school, he had special swim classes at the Y. Jonah worked as a volunteer. I networked with other moms and scored a playdate for Ian. On Thursday, I dodged out of a photography class to talk with Ian's case worker for 20 minutes. I requested that the school district provide in-home speech therapy and a social skills class, so my kid wouldn't call a woman's breasts "bongo drums" in public. Then she told me that we had to assemble a file to present to the Board of Ed in order to get these services. The first thing she needed from me was a three page written justification. It will take months to get approval. In the meantime, I need to find a better therapist and one that isn't 1-1/2 hours away from the house. 

I really want to be one those "free-range" moms. One that lets her kids out the backdoor of the house and then ignores them until sunset. I would even not mind being a "tiger mom" who berates her kid until she gets straight As and then basks in the glory of producing the perfect child. Instead, I have to be a warrior mom, who has to combat bureaucracy with nerves of steel and drive like a trucker (a trucker who listens to NPR) all over creation for services. 

The trouble is that all this warrior mom stuff is exhausting. I hit a wall a few weeks ago and I realized that I needed to do a better job taking care of myself. More photography classes for me in the future!