Just a little nuts

Just a little nuts
A blog about single parenting & autism

Sunday, August 31, 2014

Maiming and Dismemberment

This is just a snapshot of the at least once a day close calls with serious injury we have:

Saturday: Failure in the impulse control department when she grabbed my coffee the barista just set down, and grabbed very enthusiastically so that it splashed all over her face and body. Luckily I had a second thought when I ordered and had said, "Tall Americano, room for half inch of cold soy...actually make it an inch." So that was a fun near emergency at the mall.

Sunday: Another failure in the impulse control department occurred when she found the plastic loop from a tag still embedded in her My Little Pony purse and decided to see what would happen if she put her finger in the loop and then spun the purse in circles while hanging from her finger in the loop, tighter and tighter til her finger turned blue and the tiny plastic loop was all wound up and stuck on itself. So that was a fun near emergency at the park.

Friday, August 29, 2014

Things we learned this summer...

- Loud environments bring out the worst behavior, make good choices impossible, turn her just plain crazy
- Gyms and school cafeterias and public indoor swimming pools are too echo-ey
- Little Squirrel can't listen and "hear" if I'm speaking directly to her, but can understand every word if I'm talking to someone else

Monday, August 18, 2014

Off topic

On the way back from a playland Little Squirrel and her friend were talking about their dads. Little Squirrel's friend asked about her dad. Little Squirrel told her something really confusing about her dad being on a mountain, and being in jail, and running over someone with his car and being in trouble. Her friend responded with a story about her own dad, who lives in Florida, and is 67, and how one night someone came to the door and her dad told her to get upstairs and a man came in and fought with her dad and she described blood and then she said her dad didn't go to jail but the man did.

Then Little Squirrel replied with, "Oh, I have a funny story..."

And I tried to redirect her, "That has nothing to do with what [your friend] is telling you about..." And I asked her to hold her thoughts.

She did.

Then when [her friend] was done telling the story and it was Little Squirrel's turn she busted out with:

"I heard a funny story about a dog that was walking on a roof and then on another roof then he fell into the toilet..."

And then I redirected her again, "That still has nothing to do with what [your friend] was telling you about, and it's not even funny. And it's not even a story. Where did you hear it?"

Little Squirrel confessed, "Okay. I didn't hear it. I just made it up from my imagination."

Okay....so classic example of what we work on in speech therapy and in counseling, staying on topic during conversations, but are clearly getting nowhere.

You know your kid is autistic when...

you tell them they have autism and they have absolutely zero reaction. No questions at all.

The other day I told her about when she was 3 years old and we went to a special doctor and the doctor did a lot of fun games with her that were really tests and the doctor said her brain is a little bit different than other kids and we call that autism and autism just means some things are hard like loud places and waiting for things and making friends but it also means cool things like being the best reader and speller and artist in class and being great at music and doing math tricks in her head.

From how paranoid she is about germs and sickness I was afraid she would react like, "Am I going to die???!!!" That's the reaction I was prepared for. But there was no reaction. At all.

Like the times I told her that her dad is in prison. No reaction. At all.

But then I heard her telling her friend about her dad the other day, that he had to go away to a jail because he ran over someone with his car and got in trouble. So at some point some of it did sink in.

I'll have to tell her another time when she's present because she's usually not present but sometimes it's hard to tell. I could have picked the wrong time. I think I wanted to tell her and made myself think she was present because I wanted to explain to her why she gets in trouble and has a hard time everywhere she goes: ballet class, church, Boys & Girls Club, swimming lessons, swimming pools in general, movies/theater, assemblies, any kind of group activity, anywhere they want her to sit and be quiet, etc. I didn't add school to the list because she feels safe there. They have it pretty dialed in with her. So we're lucky in that regard. Except for the beginning of every year is always bumpy. And it's almost the beginning of the year....oh boy, hang on.

By "present" I mean connected, with a settled nervous system, and using original speech to communicate. Those moments are rare and memorable.

Wednesday, August 13, 2014

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.

Monday, August 11, 2014

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.

Saturday, August 9, 2014

The Boys & Girls Club situation...

I talked to the Director, and she was unaware of Little Squirrel's diagnoses (autism AND adhd) even though it is stated plainly on our application and I have told every staff member who has reported behavior problems to me. But for some reason they don't share the information with each other, have no training about autism spectrum disorder, don't know anything about autism, etc. So all summer they have been punishing her for behaviors she can't control and taking away her privileges, then failing to protect her in areas where she is vulnerable--such as when kids find it amusing to tell her to do things to humiliate herself and she'll do it because she likes the attention, doesn't know the difference between laughing with you vs. laughing at you, doesn't feel shame or embarrassment, is desperate to please and make friends, etc.

I am just angry. Angry.

But she will finish the summer there--just another week, then I'll sign her up for after school daycare, which will cost me hundreds of dollars per month vs. Boys & Girls Club which is FREE (free for after school with $30/yr membership). But, you get what you pay for and clearly Boys & Girls Club just doesn't have the training or capability to handle autism, which is really unfair to exclude autistic kids from being able to participate in what this program has to offer other kids.

Wednesday, August 6, 2014

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.

Sunday, August 3, 2014

Stuck - just stuck

I read a short but interesting and totally dead-on true article that summed up most of autism behaviors as the result of "getting stuck."

Oh yes. Man, are we stuck.

Stuck on squirrels. Stuck making the squirrel face. Stuck when we say "squirrel!" and can't stop. Stuck when something is funny once but we can't stop doing it 800 more times. For 8 years. Stuck in our own head and can't imagine anyone else's perspective. Stuck doing the same routines over and over because we did it that way once.

Stuck when we decided it's too boring to "just eat." And since I am battling (but still losing) the association between eating and screen time, we compromised on eating and drawing, instead of eating and watching.

Now, months later, Little Squirrel would prefer to skip ice cream if it means she has to sit there and "just eat" it. At a birthday party when the cake was passed out she came to me asking for paper to draw (oh hell no, I gave her the choice of "just eating" the cake or leaving). It's gotten so bad that the word "eat" isn't able to be spoken without its partner "draw." She will interrupt conversations when she overhears the word "eat" to give the correction "eat and draw!" In fact, "eat and draw" have merged to become one word on our Mad Libs, as I found out today when I made the mistake of offering the word "eat" for a verb, because I forgot about the problematic word and only suggested it because we actually were eating so it's the first thing I could think of!