Just a little nuts

Just a little nuts
A blog about single parenting & autism

Wednesday, December 12, 2012

Car talk

In the car after school:
Little Squirrel: "I want to talk about school."
Me: "Okay."
.........(waiting)......
Little Squirrel: "Say it."
Me: "What?"
Little Squirrel: "Say it!" (getting angry)
Me: "What do you want me to say?"
Little Squirrel: "Say, 'did you...'"
(Oh! then I knew I was supposed to ask a question but then had to figure out which one)
Me: "Did you...have a happy day?"
..........(waiting, while she determined if the question was suitable)......
Little Squirrel: "Uh huh. Especially at recess."
(A clue!)
Me: "Did you play with kids at recess?"
Little Squirrel: "Yeah!" (then she told about playing some sort of monster version of hide and seek and tag with her friend Alison and their autistic sidekick Eduardo)

I wish I could say the conversation ended well, but it devolved in its usual way of her getting frustrated trying to find the words to tell me something, then getting mad and yelling "I don't want to talk about it! Quit making me talk!" -- even though she brought it up. I can't win...

Wednesday, December 5, 2012

Worst Present EVER


Shoulda seen Little Squirrel's look of horror when she ran toward a Christmas tree in a store, raced up to see what was inside the huge brightly wrapped box underneath the tree and found it to be full of cans of creamed corn and other vegetables (for the food drive). She thought that was the sickest joke ever--and with the backstory being Little Squirrel's history of irrational fear of vegetables/fruit, it was even funnier to see!

Tuesday, December 4, 2012

Evaluation: Good news/Bad news

Good news: she's still autistic! Bad news: she's still autistic! I'm torn over this because if she's NOT autistic, then I am crazy...and imagining everything. And that would be over 5 years of imagining.

I didn't have to worry about having to "prove it" because Little Squirrel gave them a show right out of the box. Normally I would be nervous about her acting like that around strangers but FOR ONCE, I was happy to see her rolling, and rocking, and writhing, and repeating the same thing over and over.

What I said about God leading me toward what Little Squirrel needs holds true: we got a good doctor. And he's not going to send us back through the same ol' brush-brush, swing-swing OT routine. Just what I was hoping to hear: we're going to address the social problems first, by attending social skills classes! I didn't know such a thing existed or that we'd be eligible. He also advised we go back to the psychiatrist for another eval and start talking meds. Years ago I would have said no way. But if meds can help her succeed in school and build positive social skills, I am willing to try. And if meds will help her one day move out and live on her own--I say bring on the pills!

Monday, December 3, 2012

Evaluation Eve

Tomorrow is the long awaited evaluation at a neurodevelopmental pediatrician we've never seen before. Actually, we haven't seen a neurodevelopmental pediatrician for about 2 years because right after the autism diagnosis in 2010, I applied for SSI as was recommended, then promptly lost our health coverage as a result. I was lucky to just find a regular pediatrician after that. To get a referral to a specialist took awhile. And we've been on waiting lists for all the neuro ped clinics ever since!

So 2 years of strange, ever-changing spectrum behavior, and just me and Google to try to troubleshoot it. We've had OT but those people just want to "brush" away all the issues, or if that doesn't work, stick her in the swing, or that doesn't work, here's a tub of dry beans. There are no two cases of autism alike, so what's with all the one-size-fits-all therapies?

It feels like the night before a midterm or final exam, or like a job interview where I will have a short amount of time to recite a bunch of qualifications of what makes Little Squirrel autistic. With lower functioning kids it is obvious and parents probably don't have to "prove" it. But with high functioning kids it's difficult because those few minutes in front of the doctor might be the best ones of the whole day! So it's up to me to relay accurate information to describe the atypical social behaviors, the OCD, the anxiety, the tics, the sensory reactions, etc.

And even in the atypical crowd we are "atypical." There's just SO MUCH weird stuff she does that I often don't know where to begin. I often get flashes of all the strange phases we've gone through:

  • the fear of old ladies phase
  • the fear of her own name and obsession with nicknames phase (the boys names from Magic School Bus:  Ralphie, Arnold, Carlos)
  • the forever it took until she learned to speak in first person "help me", instead of "help you"
  • the "are you talking about me?????!!!!" hysteria when hearing the "she" pronoun
  • the insistence to carry a beat up old dvd box or vhs movie box or a board book (or 10) everywhere we went like some kids carry a stuff animal or doll)
  • the frantic kicking of the seat at every stop light, and then when speech came, "DRIVE IT!"
  • the demands that I repeat everything she said, and RIGHT NOW
  • the 3rd birthday where I was still buying diapers and formula for a kid who won't eat or potty train, with no hope in sight
  • the list of hated words that had to be avoided for some arbitrary reason I'll never know: people, thank you, included, just, difficult, peek a boo, etc
  • the allure of lying down in doorways of stores (especially automatic ones) or while waiting in a line
  • the first 3 1/2 years that she didn't seem to understand a darn thing I said...
We've moved on (see I'm still trained to avoid the "she" pronoun and may be stuck in the "we" tense forever) from a lot of these finally but of course it's like the whack-a-mole game, where we just have new things to whack now.

Now that Little Squirrel is in kindergarten, I'd like to find some help with her social problems. She gets 30 minutes a day in the special ed room when she practices social scenarios such as appropriate reactions and touching (or not touching) and good classroom behavior, etc. But that's all geared for keeping her under control at school, which they seem to have a handle on pretty well. What I need is help outside of school, for situations like approaching other kids to play (and not scaring them away); strategies for self control in public; listening to mommy without throwing show-stopping tantrums; if there is any way to speed up the auditory processing because I am so tired of constantly repeating myself (it's worse than hanging out with my 82 year old father!) and what kind of pills are in our future--and I do mean for the both of us!

Well, we shall see. I've been in this long enough to know I can't expect any magic fixes. Yet my ongoing prayer has been for God to guide me to what Little Squirrel needs, so I know I can trust this course whatever it may be.

Friday, November 30, 2012

Context

Little Squirrel's ears hear totally different words (such as Arizona becomes donut), and I have to constantly repeat myself. She doesn't seem to utilize context at all when hearing spoken communication. Yet she can use context when reading and trying to guess at words she doesn't know in books.

Thursday, November 22, 2012

Happy Thanksgiving...now what do we do?

For a child that hates most food, and all Thanksgiving food, and can't handle social situations--what in the world do we do on Thanksgiving Day??? A day that I knew as festive and fun as a child is now a long, grueling day of torture and isolation.

Tuesday, November 13, 2012

New IEP goals

I decided that even though Little Squirrel is academically advanced, as long as the school isn't trying to talk me out of the IEP, and seems to think there are still reasonable goals to be met, then I am on board.

Little Squirrel met all of her goals from last year, so now we have new ones.

1. Be able to ask for help with directions on assignments 4 ouf of 6 times
2. Be able to troubleshoot own problems without crying 4 out of 6 times
3. Use Wh- words correctly with correct word order 80% of trials
4. Follow multi-step directions accurately 80% of trials
5. DO NOT BOX SCHOOL PSYCHOLOGIST IN THE NUTS! EVER!

If I was ever undecided about still needing an IEP, my indecision was lifted after #5.

Saturday, November 10, 2012

Random thought: Do-Gooders

Do-Gooders only do good as long as it makes them feel good. Real givers give til it hurts.

Monday, November 5, 2012

Next time it's Halloween

I got a hand me down Halloween outfit (glitter pumpkin shirt/candy corn pants) for next year, and when Little Squirrel said, "but we had Halloween already," I replied, "this is for next time it's Halloween...and you'll be six." Innocent enough right? (Just trying to put some perspective on the time frame, and growing, and bigger sizes, etc) But what Little Squirrel heard was, "next time it's Halloween you'll be six." And the key to this misunderstanding is that to Little Squirrel, "next time" means tomorrow, because she hates the word tomorrow for some reason. So now she's freaking out because she was begging for her bath time and bed so she can wake up and be six tomorrow and in every manner of speaking I can think of, I have told her NO. So now she's pissed tomorrow will not be her birthday and she will not be turning six before Willow after all (the idea of beating Willow to six was very appealing). Even though she's very upset, I think she finally understands. Maybe. But I might have to throw her a birthday party tomorrow anyway, because I give up.

ps. her birthday is in the summer

Hola amigo


Went to the zoo with BFF Willow. Highlights were the seals and the cheetah and when Little Squirrel approached a Hispanic family announcing that they 'say Spanish' and yelling 'hola amigo' at them and then loudly announcing her observation that 'they all have brown skin!', at which point I noticed that EVERYONE around us had brown skin, AND they were ALL staring at us...and then we ran.

The reason this is so ridiculous is because for her whole life Little Squirrel has gone to daycare and preschool with kids and teachers of all colors, many spanish speakers. One of her best friends is half Japanese/black. And it wasn't until that moment at the zoo that she finally noticed her skin was different and decided to comment on it TO EVERYONE.

Thursday, November 1, 2012

ABA covered by Medicaid and other news


I got a postcard in the mail saying that starting January 2013 Washington Medicaid will begin covering ABA services. This is interesting news. But now the trick is finding a place that will actually take Medicaid. ha! I emailed the closest local place to see if they will take Medicaid in 2013. Waiting for a reply. They seem to have a wider philosophy toward therapies, an individualized approach. I think that could be worth a try. All of our OT experiences have been very text book, and Little Squirrel has a lot of gray areas that they couldn't get to. She gets an individualized approach from school due to the IEP, but that's geared toward her behavior AT SCHOOL, and it's her behavior when she's NOT in school that's the bigger issue now. Like what you may ask? Oh let's see, the incessant kissing noise she's been making for months now. Her compulsion to talk to and touch every stranger we see. Her compulsion to kiss strange dogs on the face. Her panic and frantic behavior in all social events involving other children (desperate to participate and frantic to be first, panicked about being left out, etc. which results in shoving, grabbing, playing dictator over all social play to the extent other kids run away, etc), and don't get me started on the irrational fears of food and shadows.

After a few piano lessons Little Squirrel's teacher commented that Little Squirrel shows a gift with music, which is kind of cool to hear since that is always what I have thought.

We ran into Little Squirrel's old teacher from the public school early intervention preschool program, the one whose class Little Squirrel was in for 2 years, the one in charge of Little Squirrel's IEP for the last 2 years, and get this...she couldn't remember Little Squirrel's name! Yep. That happened.

Sunday, October 21, 2012

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.


Thursday, October 18, 2012

The dilemma: Do we really need an IEP?


IEP meeting Nov. 9. Meanwhile I'm wondering if we need one anymore. Little Squirrel is advanced academically and is getting the social skills practice for 15 minutes a day in the special ed room. I don't think she needs the "tracking" that an IEP does, and that seems like so much to ask of the teachers who already maxed out. I don't really care how many times she does this or that. I only care that she's able to remain mainstream. And she is. Not even any need of a para in sight. My long term goal is for her to go to a magnet school starting middle school, and I know some schools only take a quota of IEPs. It may be in our best interest to ditch it and go rogue! All Little Squirrel really needs can be handled with a 504 plan--such as how she eats in the special ed room to avoid the chaos of the cafeteria. And she eats with a small group of varied development lunch buddies so she still gets the social aspect. Though she does still need speech therapy, to continue how to use language correctly and efficiently. But with medicaid we could likely get that outside of school. I read so much about parents having to put on their butt-kicking boots for IEP meetings. Little Squirrel doesn't happen to attend a lazy school, so I don't think that's necessary. Unless they have some good reason we need to keep the IEP, I think we might call it quits.

Wednesday, October 10, 2012

"Just" is a "girl noise"

For months I've been wondering what in the world a "girl noise" is, as I am often accused of making Little Squirrel make "a girl noise," in moments of her (or our) anger or frustration. There is usually some mystery phrase like this that circulates our daily life. The last one was "don't say that to both kids," which would be yelled in anger, and it took me and others in our life a long time to determine the provocation. Turns out "don't say that to both kids!" was because she didn't like it when more than one person was talking at once, and especially not when the voices were saying similar things, such as in giving her praise, or instruction, or making an observation, at the same time. The greatest culprit of this was Grandma, since the phrase came to include, "don't say that to both kids like Grandma!" This make sense since Grandma is the most likely person we know to be constantly talking.

And now after hearing about this mysterious "girl noise" for so long I have finally been given a clue: apparently, the word "just" is a girl noise. I'm still not sure why, but at least that narrows it down.

Saturday, October 6, 2012

Rewards a double edged sword

While Little Squirrel responds well to a reward system, the school is learning that it can backfire when she becomes obsessed with earning the reward, and hysterical about not getting the reward.

At one of her preschools last year they used a system of "green, yellow, red" - a visual stop light made out of pie tins with student's names clipped on the edges with clothes pins. Bad behavior resulted in having your clothespin moved to yellow as a warning and then to red if continued. Being on red meant you lost 15 minutes of free play.

Little Squirrel HATED being on red and even the thought of it. She was only on red one time and that was enough. It was enough of a reinforcement to keep her line throughout the year without raising her anxiety too much.

At her kindergarten this year, she is at a school that uses a system of tickets for "getting caught being good." A student gets a ticket (like a fair ticket) for doing something "responsible, safe or respectful" and the ticket goes into a bucket and names are drawn at the end of the day. The drawn names receive a small prize.

This system seems all fine and good, but for Little Squirrel it throws in an extra level of anxiety over "NOT getting something" or "losing" or "being left out." She talks of the tickets often at home and I have noticed the reward system is the basis for some meltdowns at school.

A recent incident involved Little Squirrel grabbing a book from another student, which I believe she did on impulse because she was in one of "those moods," and the book ripped, which led to a massive meltdown.

The teacher sat down with her and drew a story about what happened and sent it home in her backpack.

I talked with Little Squirrel about it and based on her responses was able to determine the meltdown wasn't over the book being ripped, but anxiety at the realization she was in trouble and being in trouble meant a time out and WORSE: no ticket for the day. That seemed pretty obvious to me.

Her teacher had a surprising response to my email, assuring me there was no time out involved and that the tickets weren't involved either. In the teacher's mind, since a time out or withholding of ticket did not materialize, that could not be what Little Squirrel was freaking out about. But in Little Squirrel's mind, nothing had to materialize--the deep anxiety and fear connections were enough. People with an autism disorder can often connect anxiety or fear to objects or events in indirect ways.

I was a little disappointed the teacher didn't seem to understand this because she is a veteran kindergarten teacher (she's like a drill sergeant, lion tamer, orchestra conductor combined), but the woman does an excellent job with a huge class of 5 year olds, I would never criticize her. I just have to remember the quirks of the autism spectrum aren't as obvious to everyone, and I can't expect anyone but me to understand how autism looks on Little Squirrel.

I'm reading a great book about anxiety in autism, called "Managing Anxiety in People with Autism" by Anne M. Chalfant,, Psy.D. Little Squirrel is like a case study for this book. A post about this book to come later.

Tuesday, October 2, 2012

Introduction to The Learning Support Room

The Learning Support room is modern lingo for "special ed." It's not the special ed of decades past, however. Little Squirrel doesn't have any cognitive impairments when it comes to reading, writing, math, etc. In fact she's advanced, if not on the edge of gifted. What special ed provides these days came as quite a surprise to me, in a good way, because it's exactly what Little Squirrel needs.

For 15 minutes each day Little Squirrel goes to the Learning Support room to practice classroom etiquette, responding appropriately to teacher signals, sitting beside someone without touching or bothering them, etc. This is a vital component of the day. Without these skills, a kid like Little Squirrel with exceptional abilities would never be able to advance academically. Special Ed has come a long way. Yay, for special ed!