All the well-meaning, pacifying comments like, "Oh, she's FINE!" and "She's doing great!" and "but she seems so normal to me", only make the let downs a farther fall when the bad reviews pop up. I get sucked in and start second guessing everything and thinking "well maybe she really is fine...", then SMACK! the sting of reality.
A specific example is the first day of jumpstart kindergarten last year when I didn't tell the teacher about the diagnosis or IEP. I was so tired of people saying, "but she seems so normal" so I decided to just see if the teacher even noticed. Then I figured we wouldn't even need an IEP anymore. I was imagining a very normal future. So the second day at pick up the following conversation was pretty disheartening:
Teacher: "I'm sorry. I didn't realize she has an IEP."
Me: "Oh, I didn't want to say anything yet until we see how she does. She can hang pretty well with typical kids...."
Teacher, shaking her head: "Well, I don't know. It's been pretty rough."
Huge deflate there. Reality check. So I did my duty and called a meeting with the whole school team, plus Little Squirrel's preschool teacher who could practically write a manual on her.
We brainstormed some accommodations, and at a later IEP meeting, set some new goals.
Little Squirrel adjusted really well. She loves school. The structure and routine is just what she needs. We would do great if school was every day of the year.
But then Little Squirrel did so well that the same teacher who was concerned then seemed to forget where we came from, and began to act as though Little Squirrel was typical, doesn't need any extra help, and then threw me under the bus on a behavioral evaluation for a new neuro-ped (only took us 2 years to get back with a neuro-ped after losing Kaiser insurance when Little Squirrel got SSI). The evaluation with the new neuro-ped was right around the time the DSM-5 came out. I wasn't really afraid he would drop the diagnosis because the opinion of autism drs between each other is like the Supreme Court--not often do they overturn each other's diagnosis. But still, it was a concern that the teacher could have lost the diagnosis for us.
However, Little Squirrel really pulled out the stops of autism in all new ways even for her! So it turned out I didn't have to worry. And the doctor that was actually concerned about whether she was getting ENOUGH help.
Gah! I just can't win.
Then just this past weekend, someone I thought was a friend, and who also has a special needs child, told me they wouldn't try out our church again because Little Squirrel's behavior upset her daughter so much that now she doesn't want to go back to church again.
Yeah, like she's one to talk. Her daughter can throw some real showstoppers herself.
But it's still a kick in the gut to hear it, from anyone.
The people who so often blow off my concerns, dismiss the truth and imply that I'm just being too picky about her behavior, or try to make me believe all kids act like this and I'm just clueless, are the cause of the depression I feel for days after a public behavior blow up or critical comment. It makes me want to just give up and hide.