Just a little nuts

Just a little nuts
A blog about single parenting & autism

Tuesday, December 16, 2014

Glee Club drop out

Welp, tonight was the winter concert at school and it did not go well. LS is in the Glee club. They have only had one other performance so far but the first one was in front of a church at night outdoors. Different setting. Nothing noticeably weird happened. We were not so lucky tonight. LS was front and center on stage so I couldn't see her much because the director was standing in front of her (no coincidence there). At first when I did see her she was singing and everything seemed well and I felt tears coming on because I was so proud she could be part of the group and participating. Then during the 3rd song I noticed she took her santa hat off. Then she was chewing the hat and rubbing the fluff ball at the end of it all over her face. Then at the last song she was making weird faces and sticking her tongue out at the audience. And then...after the last song she ran out to the edge of the stage by herself and did a big dramatic bow curtsy. I was trying to crawl under my chair so I didn't see anything else she did but when the curtains were closing she was back in her spot in the front row, reaching her arms out and the last thing I saw of her she was yelling MOMMY! desperately looking out in the crowd for me before the curtains closed on her face. I had moved to sit with her bff's parents so that could have been part of the problem. I wasn't where she last saw me. But still....! Really???

Oh, and then instead of going to sit with the other Glee kids on the bleachers to watch the Samba drum kids perform, LS somehow found me in the audience and sat on my lap and made monkey sounds and flailed around and people stared at us. I knew the drumming was too loud for her and it was really hard to control her flailing. 

Then after all that.... people still had the nerve to tell me "Oh she's fine" "she's so cute" "she was enjoying herself" etc. I'm tired of the pacifying comments. 

One of the Glee volunteers lectured LS afterward, about pulling the bowing stunt. Told her that the applause was for the whole group, not just for her. 

I know, I know. It was loud. It was crowded. There was an audience. All ingredients for disaster. But I get lulled into thinking she can do these things. Because of all the things people say to me and how they refuse to acknowledge reality Instead everyone wants me to believe everything is just fine. All kids are like that. Kids go through things. Blah blah blah. It just makes the let downs a bigger fall. 

Really, what really gets me is that no one will let me just be entitled to a little heartbreak for even a minute. The heartbreak that all their kids can stand there singing, just singing, (and they all did, I looked at all the other kids) but mine can't. Or swim. Or ride a bike. Or tie shoes. Or go to Boys & Girls Club after school. Or go to ballet class. Or movies. Or restaurants. Or stores. Or do drum line next year like I hoped (because LS has impeccable rhythm). Or who knows what else. Yes, she is mainstreamed and can do a lot more than other ASD kids and I'm grateful she doesn't have the medical problems of some, but it makes it so confusing because we don't know where we fit in. 


Friday, December 12, 2014

Elf on a shelf: Keep it clean!

You 'elf on a shelf' people need to keep it clean! At the bus stop today the parents were sharing photos of their elf on the shelf pooping out hershey's kisses. The kids all thought it was hilarious. Unfortunately, so did LS. When she's still talking about it and reliving the moment in June, and they are sick of hearing about it, I will remind them it's their fault. But all they have to do is hear about it at the bus stop once a day. For me it could be years of hearing about it daily, any time, all the time, and in appropriate places and at inappropriate times.

Tuesday, December 9, 2014

Piano recital

LS had a piano recital Sunday afternoon. Though it was a casual open house style recital I still wasn't able to get video of her playing her songs because it all happened so fast. Literally. She pretty much just barged into the room of quietly seated guests and announced she was next up to play. Luckily she at least let the boy who was already at the piano finish before she plopped down and started playing, without even taking a breath or waiting for her teacher to finish introducing her.

She played the pieces very well and even did an encore. There was applause, and laughter (the laughter due to her lack of hesitation to get up there and have her turn). Unfortunately, any kind of attention can cause things to take a turn for the weird...and they did. The next step toward the weird was LS marching around in the middle of the room shaking the jingle bells and yelling "everybody shake it!" That's okay. It was festive. And gained more laughter. But then it devolved to her going up to the piano again in between sets, banging a nonsense chord and yelling "goose in the toilet!"  I took her out of the room after that but then she escaped and ran back in, running around with the jingle bells yelling "everyone shake your tummies!" That was our cue to leave before things got worse, and she had already attracted the "I wonder what's wrong with her" looks. So we said goodbye to her teacher and left. Overall it was a success. She didn't pull up her dress and show her underwear during the bow like last year. And no one was hurt. 

Thursday, December 4, 2014

Bloody math

The little twerp of an autism dr we visit just once a year, who doesn't even have kids, was actually scolding me about letting LS play and watch Minecraft. Meanwhile, he doesn't even know what Minecraft is.

"But what about the violence???" He lisped dramatically.

I tried to explain the game and that killing isn't really the objective. I didn't bother explaining the creative mode, the building, the fact that it helps her have something in common to talk about with other kids, that other kids are more tolerant of her behavior when they have something in common, etc.

Explaining the Stampy Cat Youtube channel was even harder--why I let her watch videos obsessively, videos of someone else playing Minecraft...

He gave a scolding, warning look and proceeded with the yearly evaluation of academics. After the reading and spelling evaluation, he gave LS the math worksheet.

"Oh, bloody math," LS muttered.

He turned to me with wide eyes, "Did she just say 'bloody' math???"

"Well yeah," I admitted. "That comes from watching Stampy Cat. He's british..."

"See...." he shooked his head shamefully. "They repeat what they hear...."

Of course I didn't tell him that Stampy actually used worse language in earlier videos, before he realized his audience was mostly kids. There was the day LS stumbled across one of these earlier videos and thankfully was fully immersed in building something in creative mode, while the video was chromecasting to the tv, so she didn't hear Stampy say "fucktard penis head."

Yep, that made my head whip around. For sure.

At least LS didn't say THAT at the dr appointment. Even though that would be the best place, of all places, to say it.

Maybe next time... : )

Monday, November 17, 2014

Obsessions and intense interests

It's normal for kids or adults to "get really into" something. The difference between them and an autistic person who "gets really into" something is that the typical people will still do other things and in the case of children, the interest will likely pass by more quickly. With an autistic child the interest is MORE intense, MORE consuming, and lasts LONGER than with a typical child. Every interest Little Squirrel has had has been this way. Her friends will get interested in My Little Pony, and LS does too, but the friends will also have interests in Princesses, Spiderman, or other characters. But not LS. It was all MLP, all the time, for a very long time. That one was over a year. Before MLP was Angry Birds. All Angry Birds, all the time. After MLP was Phineas and Ferb. All P&F, all the time. Now it is Minecraft. This one will last longer, I can tell. Because she's not just obsessed with playing it but also with watching others play it on youtube (Stampy Cat and Amy Lee and Squid are the only ones she's allowed to watch). She doesn't watch or play anything else but Minecraft.

Interests quickly become obsessions and obsessions ever more quickly become perseverations. Watching Stampy Cat again and again is familiar and predictable. Playing Minecraft brings the comfort of being in a familiar world where she can control everything.

Even the squirrel perseveration started as a joke at school over a year ago, where she made a face that looked like a squirrel, then everyone laughed, so she did it again. And again. And again. That spiraled into this whole 'schtick' about squirrels that got the whole class involved (poor teacher). But what was just casual fun for her friends, to say SQUIRREL! and make squirrel faces, was all-consuming for LS. So now that it's over a year later and her friends have long ago moved on to new things, and LS is still doing the squirrel act, but not as much at school anymore since even the word alone has been outlawed in the classroom and her friends have long since been tired of it. So she saves it all up for home. For me. All squirrel, all the time.

Except for when she is doing the newer 'schtick' that involves a monkey face and scripted repetitive speech about a monkey. She alternates between the monkey and squirrel acts pretty equally. I don't prefer either one. They both make for a very long weekend. So people probably wonder why I let her play and watch Minecraft so much, I just can't even explain that at least she's quiet and it keeps the squirrel and monkey away.

Sunday, November 9, 2014

Omg the perseverations

"Squirrel!"
"Squirrel.....squirrel....squirrel....."
"The squirrel wants a nut." (she wants me to say, 'I don't have any nuts.')

"Ooo ooo ah ah."
"The monkey wants a banana." (she wants me to say, 'I don't have any bananas.')
"Monkeys everywhere."
"You're living with a monkey for the rest of your life."
"You asked for a kid and you got a monkey."

It's either the squirrel or the monkey script, all day, every day when we're together. It was a long weekend. Can't wait for work tomorrow!

Thursday, October 16, 2014

Early intervention always helps; never hurts

Study: Autism Therapy Produces Greatest Gains When Started Before Age 2 

We had a bit of a delayed start in therapy at age 3 1/2 (because I fell for the "wait and see", "she'll catch up", "she'll grow out of it", etc. approach, by listening to friends and family) but the progress was still dramatic and now LS is 92.7% mainstreamed. It astounds me when I see so many diagnoses coming at ages 6, or 8, or 10.....? I don't understand how the parents didn't know until then or wonder or question. To be fair, it's not always the parents. It can often be doctors. PC drs have been so slow to get up to speed on spectrum news. Many are still only aware of classic autism, and unaware of the spectrum, and PDD-NOS--and that the DSM now categorizes them all equally under the autism spectrum disorder umbrella. This lack of current information can delay a diagnosis for so many who could have experienced greater therapy results had they been diagnosed earlier. 

Overall, I don't get the hesitation, other than cost. It's not like prescribing medication with serious side effects. Since when does therapy have serious side effects? It never hurts. At worst, there is no progress. At best, there is. 

What really amazes me is the general lack of curiosity I get from doctors, specialists, and educators. The spectrum is so vast and there is so much to be discovered still. Whenever I ask about one of LS's particular behaviors or gifts, in an effort to get to the WHY of it, I only get pacifying comments about how great she's doing. I KNOW she is. But I am CURIOUS and I am not a scientist or specialist. But I have had to be in order to find answers to my questions.

Tuesday, October 14, 2014

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.


Wednesday, October 8, 2014

IEP: Now that I think about it...

it's the first time I'm disappointed with the school's handling of the IEP. Dropping the speech therapy and leaving nothing much left on her IEP to work on seems lazy to me. The speech teacher is great, but she is teaching to the test. Sure, Little Squirrel can perform brilliantly when it's scripted and expected and prompted and rewarded. I don't see the same progress they do. But I'm not sure the public school system has the capability to drill down on all the gray areas, and insurance doesn't pay for enough therapy sessions to make any long term difference either.

Tuesday, October 7, 2014

IEP results

The IEP meetings get smaller in attendance and the IEP itself is a third of its original size from when it began 4 years ago. They are keeping her in the social group but now her speech therapy is being reduced to once a month and "check ins." I didn't argue because she is a different person at school and as long as she is performing to standards there I can't really prove what goes on outside of school. She really does live two lives. School gives her the structure and routine she needs. She is successful there but I'm also concerned that they are overestimating her since her fierce survival skills seem to enable her to cope and blend in. Yet that can leave kids like Little Squirrel vulnerable, when given less supervision and support that they actually do need to navigate complicated social situations.

However, the progress has been huge and this is the first year I haven't had a single call or email from the teacher already by this point.

Monday, October 6, 2014

IEP eve

It's IEP eve once again. I guess this will be #5. I don't feel any more prepared or experienced than I did at the first one. Back then I think I even remember saying, "I'm just along for the ride." And I wondered why there was a weird silence in the room, and looks. And I thought, am I not supposed to be just along for the ride? Should I be doing more?

Then along the way I learned from others that IEP meetings are generally pretty adversarial. Thankfully, even though we are in a lower income school district, I have never had to argue or fight to get whatever I think Little Squirrel needs. And more thankfully, the early intervention served her well so she doesn't need much, not as far as school goes anyway. Also, I am aware that the school doesn't have a magic wand, or magic wallet, to fix things that could be better for us, or remove bullies (because there will always be more), etc. They have always been great at tracking the progress toward the goals, setting new goals, and overall, for caring about Little Squirrel.

Last year at the IEP meeting there was a moment I won't forget: the whole table of educators looking at me while one spoke on the verge of tears about, "the wonderful things you've done for your daughter." Really that just means sticking with it and putting her first and being involved. But I guess that's not the norm they experience from parents. I can't imagine anyone doing any less.

But it was nice to hear.

Sunday, October 5, 2014

It manifests in Minecraft

Last year Little Squirrel had cognitive testing. She scored well above average overall, after averaging out her extreme high scores and low scores within same categories, which is where the "atypical" features of autism come into play. Her highest score was in the spatial category on the "copying" task where she was tasked with replicating block patterns after just a few seconds to view the model. She scored 99.5%. I asked her psychiatrist what this could mean about how her brain works, since I'm always hoping for a glimpse. But just like every other useless specialist we've encountered over the years, he said mostly nothing, except to say, "Well, she has a gift." Yes, duh. No one should score that high on an evaluation. A test, yes. Evaluation, no. So ever then since I've been wondering how this "gift" might ever manifest outside of the evaluation.

Then the Minecraft obsession began. Cue block-model-copying gift. It's the perfect utilization.

She is obsessed with Mr. Stampy Cat videos on YouTube, then I noticed she is now building exact replicas of parts of his worlds. Example: She sees his bank with a pig in it; she builds one just like it. She sees his "doggy hockey rink"; she builds one just like it. But what would take me an hour, she does in 5-10 minutes. And they are exact replicas, without referring back to Mr. Stampy Cat's models.


Wednesday, October 1, 2014

Common Core, you are not our friend

What does this even mean?

Little Squirrel brought home some low scores on math assignments and tests. She tested into the superior range last year for math calculations but the format of the Common Core curriculum works against her logical, literal thinking. She couldn't make sense of the format and wrote "I don't get it" beside a lot of the problems. I didn't get it either when I helped her go through and fix the errors. I can add and subtract and solve for x, but I just can't figure out what they are asking most of the time on these pages.

I am even more opposed to Common Core now that I see how it demands that all children must learn and think the same way. It doesn't allow for any differences and appears to view different as less, or incorrect.

Saturday, September 20, 2014

Context makes a big difference

The world is confusing without context. If all the pieces don't fit together. I get glimpses into Little Squirrel's mind sometimes like two from today, which are more examples of her absence of context.

We were driving, waiting at a light and she looked out the window and saw a black plastic garbage on the ground. The bag was moving slightly. "Look, there's something moving inside that bag. I think it's a dog." But what she didn't process was the rest of the scene. That the tree branches near the bag were also moving. That the man's hair, who was sitting beside the bag, was also moving. And everything else in the scene that could be moved by a breeze was moving. But Little Squirrel didn't see any of those other parts in order to make the generalization that the wind was moving the bag. She only saw the bag. And that it was moving.

The next example happens more often than just today. Everytime she plays Mario Kart wii and one of the characters says, "I hate losing!" and she always thinks he says, "I hate music!" which doesn't make any sense in the context of a race and the finish line and winners and LOSERS.

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!

Monday, July 28, 2014

Slow processing, not ear infection

Little Squirrel tells everyone she has an ear infection and that's why she has a hard time keeping up with what they are saying or doesn't hear them at all. It's a combo of her autism (the slow auditory processing) and the ADHD (inability to tune in and focus). I tried to explain it to her as a computer that is stuck on the "loading" screen. And assured her it's not her fault.

Friday, July 25, 2014

Are they laughing with you or at you?

Autistic people really can't tell. Little Squirrel desperately wants everyone to like her and pay attention to her so to get that friendship (or what she thinks is friendship) she will do whatever they ask, and this means making a fool of herself. And then they laugh, and she laughs. But she doesn't know they are laughing AT her, or even what that means, or that it's different than just plain laughing.

This is happening at the Boys & Girls Club this summer. It could have even been happening last year at school. When I arrived to pick her up one day when they were playing outside, Little Squirrel was with a group of girls, some were older, and they were directing her to go do something across the field. She looked hesitant but appeared to be headed to carry out the orders. I got there before she completed the task and when I asked her what they were doing she said they told her to go kiss a boy. I reported this to the staff but not sure what was done if anything. Then I heard from Little Squirrel's best friend who attends the club part of the week that this happens often.

I can't keep her in a bubble. I can't change the behavior of every other kid in the world. What I can do is try to give Little Squirrel better armor against the bullying. This could mean telling her about the autism. The problem is, when someone can't imagine the perspective of others, they can't very well understand how they themselves are different when the differences are something she can't see or imagine.

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.

Monday, May 26, 2014

Eating and watching/Eating and drawing

The latest annoying quirk: Little Squirrel has convinced herself that she cannot tolerate "just eating." She insists to be watching something or drawing/coloring while she's eating. It's gotten so bad that whenever she even hears the word "eat" or "eating," even if it has nothing to do with her, she has to interrupt and insert "and draw" or "and drawing." Then she goes on to remind those around: because I don't like to JUST EAT.

Yes! We know! ugh! (my response usually goes something like that)

It's gotten so bad that she is now anxious about all eating events of the day that may happen, to the point she can't enjoy fun activities. For instance, today I told her we're going to the fair. Instead of just being happy about going to the fair, she interrogated me about whether or not we would eat there and if we do eat there then what can she do while she's eating, and then after the fair will we be having dinner at home, and if we have dinner at home can she watch something while she's eating...

I gave in about letting her watch tv (usually something short on Netflix like an episode of Curious George) while she eats awhile back after I tried to make a rule about no watching and eating. I told her she can draw or color or do homework or write in her journal or do activity books, etc while eating. And this is how that went during the meal:

Little Squirrel: Can you hear something?
Me: No
Little Squirrel: Now can you hear it?
She writes really hard with the pencil or pen so it makes a terrible scratching sound that is hard to ignore.
Me: Yes, can you stop it?
Little Squirrel: But I'm eating and drawing. Not just eating.

Basically, she wants me to HEAR and to be aware for the entire time that she is drawing and eating, not just eating, god forbid.

God help me, seriously...

Saturday, May 17, 2014

Three's a crowd

Today at a playdate with A. (Little Squirrel's best friend at school) I found out more about the real cause of the horrible social problems that have been escalating since around January. I started having emails and meetings with Little Squirrel's teacher about problems with another girl in class. Little Squirrel and E. have had a "frenemy" thing going on that seemed to have come out of nowhere. I was confused because I thought Little Squirrel and A. were BFFs, so why take time for psychological warfare with this girl, E.? And all this girl E. seems to do all day is say, "I'm not your friend" to Little Squirrel, which makes Little Squirrel instantly burst into tears until E. says, "I was just kidding!" EVERY TIME! Then E. does the same thing again in about 5 minutes. All. day. long. And E. has gotten A. to do it to Little Squirrel also. And E. has even gotten Little Squirrel to do it to A. Basically, it's a 1st grade "mean girls" scenario with E. pulling the strings. I've been trying to talk to Little Squirrel about ignoring, and role playing how to ignore, and we've dealt with the issue a lot in our weekly counseling sessions. But Little Squirrel just doesn't have the self esteem or social skills to pull that off. Today, with A.'s parents, we compared notes and put all the pieces together and I feel really bad for Little Squirrel. Basically, Little Squirrel and A. were BFFs. They have a very positive, innocent friendship that consists of jumping up and down and running around, both are ADHD (though I don't think A.'s parents are aware of this about A.), hence why A. doesn't notice Little Squirrel's differences. No fighting or bickering--which is notable for Little Squirrel since she has had social problems in this area since she became social at age 4. I was encouraged by this positive friendship and the teacher even commented on what great friends Little Squirrel and A. are and how they are so good for each other. Then along came E. She joined the class in December and set her eyes on friendship with A. She's a manipulative little thing and started telling A. not to be friends with Little Squirrel anymore or she wouldn't be A.'s friend. And she's been pressuring A. to ditch Little Squirrel. It's become like a tug of war between Little Squirrel and E. over A. Little Squirrel just wants her fun, innocent friendship with A. back, but to E. it's psychological warfare. Little Squirrel is completely ill-equip when it comes to social complexities. That's why her friendship with A. worked so well. Little Squirrel has only very surface level social understanding, so she's been just floundering around, trying to keep A. and fight off E., but sometimes that means buddying up to E. to avoid being left out. She is in way over her head and this is only 1st grade. This situation would be difficult even for a NT, but disastrous for a kid with ASD who scored 0% on the social communication part of an evaluation. It's like sending her into battle every day without any weapons, armor or strategy. This is making me rethink the mainstreaming. Her teacher says it's getting in the way of teaching and learning. Little Squirrel is gifted and advanced academically. She doesn't even know how extraordinary she is compared to other kids in her class. She reads fluently, has the handwriting of an adult, is a gifted artist, and has superior math skills. Yet she's trying desperately to be accepted by little girls who are already dressing like teenagers and can't even read the notes she writes to them.

We have a meeting next week to talk to the teacher and counselor about options for next year.

So long, MyAutismTeam.com

I had to get the heck out of there! Actually I'm not out yet. Turns out you can't delete a profile without emailing and asking them to do it. It's even worse than Facebook.

Why am I leaving? Simply because I can't keep their "Remember the golden rule policy" because people are just so damn stupid and annoying. Sorry. No, I'm not sorry. It's just true. I run on empty with patience on a daily basis and the last thing I need is EVERY single post I make to have some dolt idiot pop up making the most obvious "suggestions," when I my post did not even solicit suggestions. I could say, "Gosh I'm so sick of the rain." And some moron would pipe up and say, "Have you tried an umbrella?"

Seriously.

"Have you tried a rice bucket?" [no, I just arrived here from another planet]

"Maybe you should just tell her to just ignore those mean girls." [gee! That sounds so simple. I should have tried that FIRST!]

"Sounds like she needs a confidence boost. Take her to the zoo and let her tell you about the animals." [Again, what was I thinking! Of course, a simple trip to the zoo will cure major depressive disorder.]

"Can you structure your weekend with a schedule and free acitivities?" [Lady, puh-leaze...I am the Master of schedules and structure.]

"Have you tried hiding fruit and veggies in a smoothie? My kids drink kale brussel sprout turnip eggplant smoothies while they get liver and onion enemas -- and they can't even tell!" [okay that's an exaggeration but it's pretty damn close to the crap I've heard]

"There are other pressure vests/shorts for a lot less, only $19-59. I'm not sure why the inflatable ones are so much more..." [Because they are INFLATABLE! They PUMP UP! It involves more complex technology than just neoprene and velcro. That's why it's $350! GAH!]

I. just. can't. take. it. anymore!

MyAutismTeam.com was a great idea at first, but like most everything, people ruined it.