holiday recap

Night and day. On and off. Flip of a switch.

Saturday so mellow and "present" and reasonable. Going out of her way to be helpful and enjoying "being good." We had a calm and successful time building her Minecraft lego village together.

Then came Sunday with no self-control and outbursts and yelling and whining and crying and frantic behavior.

So unpredictable.

The triggers are pretty clear: other people. Specifically, other kids.

At Sunday School: Panicking, frantic reactions if she has to wait her turn to speak in a group. Goes berserk if anyone makes a comment that she claims was what she wanted to say. Flips out if another child wants to say something to the teacher when LS believes she has the floor (which is always). I was on desk duty near the kid's classes at church that day so I could hear LS's outbursts, averaging about every 2 minutes. Even with the reminders that we'd go to the library to play Minecraft if she was good, she just couldn't pull it off.

Minecraft is a trigger too because it's the current intense obsession. The peak of the intense interests seem to correspond with the worst behavior problems.

Lately she's frantic and consumed with her "Minecraft time" which she gets after school and after homework. She is also frantic and consumed by the red light on the tablet because it doesn't charge well and if it doesn't charge enough then that means her "night time" music on it won't play all night, which sends her into a full panic. Even though it's not a big deal because we can just plug it in by her bed....

Today there was no Minecraft time because she came at me after school crying and sobbing and wailing, claiming her friend was mean and spit at her. I saw this friend and asked what happened and the friend said that LS had said, "My dad will smack you" or something like that. LS had left out that part of course.

LS lies.

Just flat out lies.

So I never know what to believe.

At work all day I didn't feel stressed out at all, even though I was multitasking and busy. But the second I picked up LS my blood pressure was up and I was instantly so stressed and upset by her crying and sobbing and because I wanted to go inside to look for her lunch box she was demanding, "Will it waste my Minecraft time?!" repetitively and with increasing frenzy.

So the new rule is that if she comes out of school upset like that, then no Minecraft. And if she asks, "Will it waste my Minecraft time?", then no Minecraft time.

Winter break was long. So long. And we had to go to two different daycare sites due to low enrollment issues. That didn't help. The staff reported LS had a hard time with her emotions and with other kids.

She does okay at home when it's just us. But then she zones out playing Minecraft or watching it on youtube, and at least she's quiet, but I know it's not good for her to have so much screen time.

But if she's not playing Minecraft or watching it on youtube then she's following me around doing the monkey or squirrel perseveration that goes like (lately it's the monkey):

"The monkey wants a banana."
"The monkeys are staring at you."
"You are living with a monkey for the rest of your life."
"Look at this monkey." (demanding I look at her)
"Two little monkeys sitting in a tree, KISSING, first comes love..." (and the whole bit, over and over)

And during all of it she makes a monkey face and loud jungle sounds and pretends to climb the walls and I can't get through to her. She just goes into character and she's gone and I am sharing the house with a lunatic. That's what it's like in the mornings before school because there's no Minecraft weekday mornings.

So yeah, that's why I let her play Minecraft so much, for the quiet
and for my sanity.

Musical chairs

Things sure went to hell really fast with the Boys & Girls Club situation this week. Last week Little Squirrel got a referral for simply not being able to follow directions. Yeah, she has autism! Get with the program.

The complaint against Little Squirrel by the staff member was this:

It says they have had to consistently talk to Little Squirrel about following directions and that they view her failure to follow directions as "defiance."

"Little Squirrel does not listen no matter how many times we talk to her, she chooses to ignore directions or ignore us if we're talking to her and this happens every day she is in our rotations."

REALLY??? And it didn't occur to you idiots to ask the Director or Little Squirrel's parent if maybe there is some underlying reason other than "defiance" for why she seems to be ignoring you???

She has autism! That's kind of what they do! Where have you been and why are you working with children at all???

So because of this "referral" Little Squirrel had to sign a behavior contract that she didn't understand with wording like this:

What did I do that got me in trouble?

Did I get what I wanted?

Could I have gotten what I wanted another way?

This is how I will solve the problem next time.

And the best part:

"I understand my actions were unacceptable and I thought carefully about my actions while filling out this sheet. By signing this sheet, I know that I must change how I respond in the future in order to remain a member at the Boys and Girls Club." Then member signature.

Then the parents' part:

"I have read through what my child did today at the Boys and Girls Club. By signing this paper, I acknowledge that because of the offense, my child has been placed on probation. I understand that this matter has been dealt with and resolved by all parties involved. I am aware of the situation and I must have my child return this form to the club to continue attending." Parent signature.

I had to sign that so she could go back! That's like saying, "I'm sorry my child is autistic and can't act like the others.She'll try not to be autistic anymore."

I did talk to the Director and various staff members and her diagnosis is plainly stated on her application, but my communication efforts were only met with blank looks or I was told, No we don't have any training about autism here and we don't have the staffing to give any special attention.

So being on probation meant that Little Squirrel was restricted from some of her favorite activities like computer lab, and having to go into rooms she dislikes, like the games room and gym, because those rooms are WAY too loud. The games room has the foos ball and air hockey and carpet ball tables going at a deafening roar, with kids shrieking and stuff flying everywhere. And in the gym they are always playing DODGE BALL. No surprise all this set off a behavior storm and ultimately led to her totally losing it in the gym. Some boys were playing rough and accidentally knocked her down and she got so mad and tried to choke one of them. She's never done anything violent before so this was different. I feel she was pushed to her limit by being forced to be out of her element in the gym and just having her sensory limits maxed out by the gym and games room on a daily basis when she never would choose those rooms on her own.

After the choking, I got the call at work that I had to come pick her up right then. Right where I was sitting at my desk. At  my new job. And I don't have any backup childcare or support. The staff member who called me was completely cold and strict on the phone. From my observation all summer, the compassion level of the entire staff there rates at about a big, fat, zero.

She was given another referral and another behavior contract and their rule is 2 referrals you're suspended for one day.

I could see where this was going and that there was no point trying to reason with them or sending her back only to get more referrals for "ignoring" them or who knows what worse now since the choking. So I spent the rest of the afternoon on the phone and racing around trying to find last minute daycare for the last few weeks of summer.

I did find daycare. It's $180/week. There goes my plans to be rich.

And it's less than ideal. They do weekly field trips and the one this week is to the movies! Just hearing the word "autism" they flat out refused to take Little Squirrel on the field trip for fear she wouldn't be able to "sit still and listen " (like the other kids will!?) and told me she couldn't come to daycare that day because they don't have staff to watch kids staying behind.

Of course I complained to their overseeing organization but didn't get anywhere. And I had to scramble for childcare again to cover this morning.

As for how Little Squirrel is adjusting, she seems to be doing okay so far. The one big incident so far was on her first day, when I called to see how she was doing, the worker told me she was doing okay except for freaking out during one of their games....

.....which was MUSICAL CHAIRS!

Oh, c'mon! Reallllllyyy?????????? Because everyone knows how much autistic kids must just LOVE to play musical chairs. About as much as dodge ball.

Special needs daycare?

What bugs me most about the Boys & Girls Club is the lack of compassion toward my daughter and toward me trying to deal with the situation. They just have a robotic, ice cold, fake smile attitude toward every kid and parent.

Today was the last day. I got a call at work that she "choked" a kid. I really doubt it was that extreme. Seriously. It seems what happened is that some boys were playing rough and knocked her down. She thought it was on purpose so she came up fighting mad. At least she can protect herself. There are some rough kids there. But since this was her 2nd "offense" the punishment is suspension. So I had to leave work, cancel my orientation training scheduled for the next 2 days at my new job, and spend the afternoon in 97 degree heat (we don't have a/c) making calls trying to find emergency daycare for the last few weeks of summer.

Found it. And it will cost me $180/wk. AND they have field trips once a week that Little Squirrel can't participate in because oh, I don't know, MOVIES and ROLLERSKATING are pretty much hell for her, so instead of having alternatives to the field trips, they suggest I just don't bring her those days, and still pay they $180/wk of course. If it was that easy to just NOT bring her on random days then why the fuck would I be looking for daycare so frantically???

Seriously....what are parents of special needs kids supposed to do for daycare??? And SINGLE parents especially. I don't have a coparent to help and no family to lean heavily on.