Experts

maya and her cast have been on my mind a lot today. i wasn't too pleased at the treatment we reeived at ucsf. things were disjointed--we were sent from one place and person to another and expected to retell the story of what happened. none of the experts really communicated with each other. everyone seemed slightly puzzled. and the final expert, the orthopedist was so busy and backed up she spent less than a minute explaining why she was putting a huge cast on maya. really. i've spent the last 2 days carrying my cell phone in my pocket waiting to hear back from my dr about what he thinks is happening, and hearing from two physical therapist friends that the orthopedist we saw has a wierd/not so good reputation. the more i thought about all this the more i saw that the doctors involved didn't really know exactly what was going on with maya, or what would happen. for an anxious mom like me this is hard to deal with.

as i waited with cell phone in pocket for a dr call that never came we held an iep meeting for a student in my therapy program. listen to this: this kid's family was concerned he might be on the autism spectrum. they mentioned this concern on their intake form with the district but for some reason he was tested only by a speech therapist. she told the parents, after a one-hour meeting with the child, that she thought his social and play issues were mostly due to poor language skills and lack of preschool exposure. he was sent to our program which is only two half-days a week.

my co-teacher and i took one look at this guy and thought he was on the spectrum. very bright. a little hyperlexic. no imaginative play. pouring sand on the same truck over and over by himself for most of outside time each day. echolalia. very distressed by changes in routine. atypical body movements. atypical vocalizations. so we had to go the parents and say what we suspected and ask if it was okay to refer him for more testing. what a rotton roller coaster for this family.

so a very nice very new psychologist came out and tested him and said she saw many autistic-like tendencies but she couldn't qualify him as eligible for services in the school district because she couldn't diagnose him but recommended the parents see a developmental pediatrician. HUH? and we had to make our recommendation that he leave our program for a more intensive five day a week program. this dad was all for getting his son what he needed but what a crummy journey to have to go on.

there is obviously a lot more to write on this subject. but it made me think about how people in my field often talk about the parent being in denial about their child's disability. there are many reasons proposed for this; the difficulty of saying goodbye to the concept of a child you held in your mind, the lack of knowledge about what is developmentally typical. and then there are the parents people complain about who want "too many services" for their kids who think they can cure the kid with the right program. i have a feeling if my child had a disability i'd be right there, trying to get along, trying to be reasonable, but fighting for everything i thought would help.

having trouble trusting the experts.

my little experience so far with maya and her nursemaid's elbow, trivial as it may be compared to a diagnosis of autism has given me a little more insight--it is hard to trust the teachers and speech-language therapists and psychologists when they don't admit it, but don't seem to know what is wrong with your child, or why, or exactly what to do about it.

i have so much respect and admiration for the parents of the kids i work with.

and little you know who, i will miss you so much and know you will do well in your new school.

this dad and i exchanged a teary look during the meeting, really this felt like our first eye contact. taking care of kids, our own and other people's, is deep. or at least it should be