Dear Bitchy Bus Stop Mom,

Yes, I know the constant monkey sounds and monkey act that my kid does at the bus stop every single day is annoying. But at least she is cheerful every day. Not moody and bitchy like you, or sullen and miserable like your son appears to be (can't say I blame him). And here's a tip about dealing with autism (not that you would know or care): you have to be consistent. You can't play along with the monkey stuff only on days you feel like it, then reject it and be annoyed on the days you don't. That's why I don't play along with it at all, because every joke I laugh at or any silliness I participate in is a careful choice, because I know I could be stuck with it every day for the rest of our lives. That's why the monkey thing has lasted so long, because just enough people have laughed or humored her or played along on occasion. That's all it takes.

Butt Cheeks!

Except for music, I rarely, or never, watch or listen to anything around Little Squirrel. All the Facebook video clips, online news segments, funny video of whatever, etc. I either wait until night when she's in bed, or listen with headphones. This morning a short clip of a Conan interview popped up in my feed. It was short. LS was busy watching her morning lineup and eating Cheerios. The headphones were across the room. I got lazy.

The Conan interview was with Dax Shepard from Parenthood. I like him. It looked harmless. But the feed gave no indication of the topic. And all too late I simultaneously found out that part of the interview was about Dax having his butt hair shaved for a role just as LS happened to approach just in time to overhear Dax say "butt cheeks."

BUTT CHEEKS???? BUTT CHEEKS!?!? BBBUUUTTTTTT CCCHHHEEEEEEEEKKKSSS!!!!

Knowing I could be stuck with this on continuous play for months, or years, I decided denial was the best strategy.

"No, that's not what he said. You didn't hear it right." I claimed, holding my breath.

"Oh." She seemed to accept that. For the moment. But only time will tell. "Butt cheeks!" could show up AT ANY TIME. It's not a matter of IF, but WHEN.

What kind of kid gets put on probation at the Boys & Girls Club?

My kid, that's who! Yep, that's how bad ass we are. Don't mess with us. We are dangerous!

I had to sign a form about her "offenses," which basically consisted of typical Little Squirrel behavior: doesn't follow directions, disruptive, can't stay seated, can't stop talking, etc.

What makes me mad is Boys & Girls Club are staffed by just a bunch of DUHHhhhhh teenagers who go around with these fake smiles and otherwise vacant, uncaring expressions and no training or understanding of autism or ADHD, so they just think my kid is a brat and I'm using autism/ADHD as an excuse for her behavior. They have no idea the years of therapy and that I've been on top of this since she was 3. I'm not just some clueless parent in denial about my kid's behavior. I KNOW! OKAY! I KNOW!

It's really depressing when after all we've been through and how far she's progressed, that I have to be singled out by a staff member every single time I pick her up to tell me she was bad.

SHE DOESN'T EVEN KNOW SHE'S BEING BAD! She can't even process half of what people say. And she really can't stop moving her body or talking. She just can't.

But her survival skills are so fierce and she is so damn brilliant and gifted that she has learned to fit in JUST ENOUGH to seem, at a glance, like just a typical hyper, bratty kid.

And I just started a full time job. And I'm a single parent with 100% custody.

So it's going to be fun trying to find daycare at this point in the summer, since there's no way she'll be able to uphold this "behavior contract" they made us sign.

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.

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.

Autism or Just Naughty?

When an autistic child is verbal and high functioning, it can be hard to tell the difference between what is the autism and what is just being bad. It's the talking that does it. When a child can talk then everyone expects more from them, and assumes their behavior is a result of choosing to be naughty, rather than anxiety/sensory overload, frustration intolerance, developmental delay, etc.