What even is this??

I'll answer the title, before even telling you the story. This. Is. Insanity - Outrageous - Unpredictable - Nervous system exhausting B.S.

Ezra has been diagnosed autistic (level 2) since April of this year. He has profound sensory, tactile, vestibular and proprioceptive needs. He will absolutely talk you in circles, he is very bright and clever and speech is not one of the things that we have to worry about any more - after VERY DILIGENT work. Developmentally he is at the age of a kindergartner, except for things like putting on his own shoes, putting on his own clothes, he does not like having his diaper changed and doesn't like sitting on a potty chair. But hot dang! Can he put a puzzle together and build magnet towers like a little baby genius -- just don't make his hands sticky, okay?

So, my sweet boy is going to be three on January 4...we are like six weeks away from his birthday (WHAT?!). The day before he turns three, he ages out of all but one of his therapies. This doesn't mean he doesn't still need them, but that they are no longer provided by Early Intervention. Out of the five therapies that Ezra is still in, there are only two that still resonate with us - and I am going to miss his team members so much.

The next step after Early Intervention is preschool. I have never sent my kiddos to preschool, so I don't know all the things. They went right into kindergarten and then from there I homeschooled for 10 years, so this introduction is new territory.

Ezra had to go in this week (with me, and my epic back up ... my dad) to have an evaluation done and see what services that they could provide for Ezra.

We got there and I sat down on the ground (which has always been Ezra's sign that mom is staying and Ezra is safe), I had prepared Ezra for this for the week and a half leading up to this day, he knew exactly what we were there for. Walking down the tile hallway, with fluorescent lights over head, my overstimulated boy says "mom, the floor is wobbly". Having an astigmatism and probably the other "tism" too, I TOTALLY get it. The floor was indeed wobbly.

We get into this room that is literally PACKED with people. I sit on the floor, my dad sits on the floor, and they have Ezra stand at a small, Ezra-sized table, while 7 therapists surround him to watch his tricks. They have infantile toys and paper and crayons for him to do the little circus act that they want him to perform. They hold up a green puzzle piece "Ezra, can you tell us what color this is".

He's already annoyed.

"I don't know. Can you tell ME what color that is?" Ezra says sarcastically. I am dying inside with laughter.

After three minutes of their "typical interaction" with my two year - going on thirty year old son, I say "Okay guys, you gotta mix it up here. Ezra is VERY smart and he knows his colors, he can count to 30, he is very brilliant and if you keep talking to him like that he is going to turn this around on you and you're going to be the ones evaluated".

Ezra says "I'm very frustrated." Everyone laughs. Clap, monkey, clap. Dance, monkey, dance.

We get through their one hour assessment, they take Ezra to a gym to play for 20 minutes while I answer their sheet of 75 questions "Can Ezra say up to 80 words?" Yes, unless he decides he's done talking, then he will either only whisper or only sign. Trying to get him to talk in those moments only pushes him farther away. "Ok, so yes. Does Ezra respond when you call his name?" Yes, unless he's zoned out or overstimulated, if you push it the wrong way, you're headed for a meltdown. "Ok, yes."

Zero concern for the real issues. As long as he can play their little circus games and check things off their list. We can play games, he's a smart monkey in their three ring shit-show of a circus act.

We go home at 11 a.m. and 12:15 p.m. they send me a message asking for his diagnostic report from Caravel. FORTY FIVE MINUTES before his result meeting. Ezra was better prepared for this meeting than they were. I send it over to them. At 1 p.m. we have the result meeting from their one hour interview of my son. They decided that Ezra does not qualify for their services. The school counselor (who is maybe 12) says that she cannot diagnose him as autistic for educational purposes. While this sounds like a yay! We cured autism! That's not what this is. This was a complete oversight of his actual issues and problems to fit their narrative and a minimally funded Illinois school district. BUT! I have hope!

So, I talk to the principal (who is basically Miss Trunchbull) and decide that this route is not for Ezra. I wont send him into an environment where he is going to crash and burn, probably on their wobbly tile floor. Or send him straight to the chokey!

In-between the evaluation and report meetings I called a local private school and asked them if they would be willing to take a verbal autistic child and they said to send over his IEP results and they would discuss it further. No IEP, no problem right? EHHHHHHHHHHHHH (obnoxious buzzer sound).

I talk to the principal of this school and she says "I see he is very verbal now and developmentally everything looks great, I'm just worried about these meltdowns and the notes from his therapists"

oh! the notes that the other school didn't look at or take into consideration?? Those notes??

"I just dont think that we have the staff to provide him support if he's experiencing....big emotions". I said "You're a school with three year olds up to fifth grade, everyone has big emotions. What do you do when that happens?" "Oh! We put them in a chair and tell them to take some breaths and when they are ready they can come back to the group"

What the actual F***???

I swear to all that is holy, I am not crazy. So I said "What I am hearing is that you only prefer neurotypical kids in your school and don't have resources or patience to help my son?" Her response "We just already have two autistic kids in our school, already. If you and your husband want to come walk around, you can!"

"I dont have a husband, he doesn't have a dad"

"Oh. Um, I just dont think this is a good fit"

"Me either".

So, we are at a crossroad. Ezra is too autistic for the private school, not autistic enough for the public school and what in the actual swear words are we supposed to do.

So now, I am currently piecing together my own program for my son that includes play time 5x a month at the Autistic and Loved Center, Occupational and Social Behavior Therapy at a non-ABA center in IOWA, homeschool co-op groups and then homeschooling.

Ezra's current therapists were appalled -but not surprised - and told me that I should just start my own program. I'm not sure how much energy reserve I have for that at the moment, but I do have a couple mommas that have encountered the same thing and maybe a new charter school is in the works. Who knows.

I don't want my son to be labeled, I don't need him to be in special ed classes, but if they would have read ANYTHING, they would have known that he needs extra assistance and care. As his mother, I cannot in good conscience send him into a school zone that refuses to look at the facts, science, his medical history and note that he needs OT and SBT. Just no way.

There's a meme out there that says

"Your son doesn't look autistic.

Oh! I'm sorry! Son, can you please perform the autism for the lady?"

And I've never felt that more.

The system is so incredibly broken.

What a circus act!!