Just a little nuts

Just a little nuts
A blog about single parenting & autism

Monday, June 9, 2014

She's not fine

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.

Thursday, June 5, 2014

Principal's office

Usually the steps to handling Little Squirrel at school involve a series of "warnings" then "resets" then "thinking spot" then "Mr. PJ" in the intervention room ("He's a nice guy. He solves problems." - Little Squirrel). Yesterday there was an event involving Little Squirrel and the mean girl that involved spitting at each other during free time and screaming I HATE YOU. They were both sent to the principal's office.

Little Squirrel says it's because the mean girl didn't cheer for her when it was her turn to do something, but she cheered for A. and another one of their friends. Turns out, it wasn't even a cheering situation. What they were doing didn't require cheering and the mean girl was just doing it to annoy Little Squirrel. It worked.

So Little Squirrel learned how to handle one very specific tool the mean girl uses: the constant taunting "I'm not your friend" all day long. But now that the mean girl has seen this doesn't work anymore to make Little Squirrel explode, she is using different approaches.

Little Squirrel is a bottom up thinker. She can't generalize a strategy to include any kind of bullying or mean behavior. It has to be a specific scenario. We can't possibly imagine all the possible scenarios so I guess all we can do is just keep creating responses for the specific ones that come up, over and over and over and over--and maybe someday a generalized understanding will be achieved.

Tuesday, June 3, 2014

Learning some humor and bully handling

Latest humor involves silly "opposite" scenarios like if it's raining and cold, or too late at night: "Hey mommy, let's go swimming!" Then I say, "Okay! Go get your swimming on. Let's go!" And she goes to pretend to get ready. It all started during our nightly "game time" and it was a game that I lost badly. It wasn't even close. But I announced, "Hey, it was SOOO close!" It took her quite a pause to figure out I was joking and to process the layers of the joke. Now we've branched out to using that humor in many situations. It's a step toward helping her understand nuances and take a step out of her literal world. The little game is fine with me for the meantime. It hasn't gotten on  my nerves...yet.

Also, she's using some humor tactics to respond to the little jerk who plays friend one minute and bully the next=frenemy. The little jerk likes to say, "I'm not your friend" and wait for Little Squirrel to react with tears, then say, "I was just kidding!" over and over and over. All.day.long. Now when she says it, Little Squirrel says, "You're hilarious" or "Who cares?" with the perfect tone of voice (we had to role play it again and again). She seems to be feeling more confident now, finally, now that the school year is almost over!

Sunday, June 1, 2014

I wish I knew...

what the heck goes on in her body to make her behave so crazy.

It takes me off guard when she seems so normal for a couple days in a row and everyone around is always saying, "Oh, she's great!" as if I'm imagining everything. It just makes the difficult days all the more difficult and actually almost shocking, to find out she was awful to the Sunday School teacher and to see her out of control the rest of the day for no reason that I can see or that she can tell me.