After enduring 4 suspensions, and near daily interventions due to stress related assaults, I’ve had to pull my HF-ASD out of integrated class. Second Grade will replace her into Developmental Class in a different school. I’m hoping for Pathfinder Alternative
Bless the people at UW Autism Clinic for their insight and advice. As her psychiatrist said, clearly she isn’t thriving in her current environment. We went from 100% SpedEc to 20%, with 80% of the time spent integrated. It was too much for her little brain.
Very depressing, but hopefully she’ll thrive. That’s what we all want, right? The stress I’ve been under has been just as high, I get nauseous just seeing the school’s number on my caller ID. Half the time they yell immediately “Nothing’s wrong! Just calling about______”. It’s what they say the other half of the time that wrecks my days.
Now our next challenge is YMCA summer camp. New environment, kids, teachers, activities…everything she hates.
Wish me luck
Five ways my ASD kid is like a puppy.
This is NOT Holland isn’t, as a rule, a feel good-warm fuzzy-I accept Autism and it’s gifts kinda blog. I’m not saying there won’t be hearts & flowers & rainbows here.
They’ll just be….rare. Just like my life.
So I’m here to listen to and communicate with other ASD parents. And to vent. My friends, with their NT kids, are very accepting of me and my kid. But they don’t get my reality & never will. What I learn here blows my mind. I’ve learned from my NT friends how much easier my life could have been. And I learn from my ASD blogger friends how much harder it could be.
I read Homestyle Mama (with a side of Autism) blog recently called “Hi, my name is Mac and I’m an enabler” with an enormous amount of wonder & jealousy. To be as accepting as she is, willing to flow with her situtation, makes me realize that I’ve become the sort of hyper mom I’ve always dreaded. I can’t help but push push push my kid; to speak, to speak clearly, to speak politely, to speak a foreign language. To eat what I make for dinner & eat with us. To use impeccable manners. To use utensils properly. To negotiate with her sister. To clean up after herself. To be independent. And so on. One hundred battles a day, one on top of another.
Why do I do it? Is it because since she’s HF, I think I can maybe shove her into “normalcy”? Is it because her dad walked out on us the week we got her diagnosis, and I have to prove I didn’t need his apathetic help anyway?
I wish I could be more Zen like Mac. I should probably spend more time Smelling the flower, Blowing out the candle. But running through the back of my mind like a mantra at all times is: Never surrender. Never give up.
Wish me luck.
Busy day at the grocery store yesterday, everyone rushing around buying supplies for the upcoming Snowpocalypse. (For those of you outside of Seattle, Snowpocalypse= 4 inches of snow)
I didn’t notice when my daughter tried to make conversation with a 3 year old in line:
A: (in her fractured, garbled English) “What chew luking at you?”
Little girl: ”Um..”
A: (louder now) “What chew SEE?!”
Little girl hides behind her mother.
Her mom looks around, and says agressively: “Is there a problem here?”
A: “Why you look at my own toys look??”
Her mom is looking confused & a little worried. She looks at pointedly at me.
Her mom, now glaring at my kid: “She’s looking at you because you brought toys into the Grocery Store!”
A: “Chew want to play with me?”
Little girl stares silently, solemnly (which, frankly, is how most kids react to her)
Her mom: “Lets go honey.” Glares some more at me for a moment.
Now, I know I should have jumped in with all the explanations & excuses. Y’all know what they are & how that goes. I should have seperated her, stepped in front of, put the kibosh on the whole thing. But, no. I’m tired of it. I ‘ve worked so hard to get her to talk, that I’m certainly not going to stop her. I’m burnt out on what others think.
In no particular order:
1. Buying Pull Ups
2a. Vaccination alarmists
2b. People who dismiss outright said alarmists.
3. Nutritional bigots
4. Women who deride others for formula feeding. And for working outside the home. Solidarity or strife. Pick the right one.
6. Jenny McCarthy
7a. Well meaning friends constantly sending me links to the basketball playing kid
7b. My crappy attitude about this
8. The necessity of “Better Living Through Chemistry”
9. General ignorance about the disorder. What famous person will have to have a kid on the Spectrum; that will finally & completely put it in the public consciousness?
10. Having to constantly negotiate to use my iPad! :)
It had gotten to the point where I couldn’t see her eyes. I HAD to take her to the hair salon for a trim.
Like many ASD parents, I dread this chore. She’s so sensitive- the lightest, softest brush makes her wail & moan. Combing her hair after bath requires a nearly half a bottle of that fruity scented detangler. Brushing out her knots in the morning before school starts with complaints, and ends in tears. Every time. (WHAT is she doing in bed at night to get all those knots? Wrestling bears??)
I put off getting her hair cut until she can snort her bangs into her nostrils. Well, maybe not that long, but close.
I made the appointment at the salon half a block from school, so we can walk right over and enjoy the day. All was well, we were on time, she was in good spirits. The stylist has cut my daughters hair a few times, and is fantastic with kids. Since I knew she was in good hands I walked to the front of the store and sat down with a magazine for a few precious moments. I heard the complaints start immediately upon having her initial comb out, and smiled smugly, as they weren’t directed at me for once.
20 seconds of restful bliss later, the stylist came over & tapped me on the shoulder. “Can you come over here, please?”
We walk a few feet away, out of earshot of the other patrons in the waiting area, and she tells me:
"I was combing her hair, and found some lice eggs. She’s going to have to have a treatment done before I can cut her hair"
"There are eggs in her hair. This is obviously a new infestation. You just get the special shampoo & comb, and then repeat the process next week"
"Um….I’m sorry….there must be a mistake. I’m a germaphobe. That’s impossible"
She lifts up a section of her hair, which is gloriously rich & dark (see lice free pic below)
"See these little white things?"
"Looks like dandruff."
She give me a level look. ”No. It’s lice.”
I can’t breathe. My face is flushed, I feel like it must be beet red. I have tunnel vision, but I can see the store’s assistant disposing of the little hair cutting cape, and quickly disinfecting the chair. I’m humiliated. I feel horrible that I’ve brought this infestation into the store. I invision little lice-ies jumping all over the room, like fleas. Now I’m nauseous. I dont want to touch her, bring her in the house, put her in the car…
I get ahold of myself & my imagination. A quick trip to Rite Aid, and I read the directions in the parking lot before driving home. Soak solution on head for 30 minutes, check. Wash out of hair in the shower, check. Comb through another solution with a this special metal comb….O CRAP.
I’m supposed to comb my ASD’s kid with a metal comb, “section by section”, “long hair can take up to two hours” Really?? What fresh hell is this??!
It was bribery hell, is what it was. I wont bore you with the details of the screaming and struggling. I will tell you that this process cost me an extra scoop of ice cream for dessert, an extra hour of games on the iPad, an agreement to spend next weekend at the Childrens Museum (to play with their world class water table), and a promise of whatever she wanted to eat every meal of the next day.
Also: a bruise to my cheek where she head butted me, a broken big toe nail where she jumped on my foot, a shattered soap dish & a chip out of the bathroom mirror.
Round two is tomorrow…
A few years ago, (when my ASD daughter was 4 & my NT daughter was 2) a friend & her sons invited us to go the Klondike Gold Rush Museum in Seattle for “Junior Ranger Day”. This event is put on by the National Park Service, and I am always up for experiencing my tax dollars at work in a positive fashion. After that, we were going to have a picnic and do some Seattle window shopping.
This was a BIG deal for me. Having young children, and one on the Spectrum, I was pretty much a home body. But all the sudden I had something to prove. My husband had left us a few months prior, and one of the last things he snarled at me before walking about with his belongings was, “You always complained about being a single parent. Well, now you are.”
So being motivated to be some kinda super human, we got up early (uh-oh), took the local water taxi to Bremerton (10 minute crossing). Then the Bremerton-Seattle ferry (1 hour crossing.) That’s two ferry’s. And then we walked a mile to get to the museum. The girls were cranky (substitute: 1 whiny toddler plus 1 screaming banshee) before we even walked in the door of the museum at 10:30 am (note the word MUSEUM. Those sort of places like QUIET children. They all hated me the second I dragged the girls through the door.)
We were going to spend the whole day with my friend and her two kids in Seattle doing random stuff. I soon realized that we weren’t gonna make it the whole day there & I was going to have to take them home on the 3pm ferry.
A few minutes later, after my ASD kid stomped through a fake fireplace, and tore a hole in a display tent, I amended that to the 12:45pm ferry.
So I drag these two worn out little kids a mile back to the ferry terminal. Gawd, could they walk any slower?! I’m worried we will be late, so I keep picking one up, walking a while, putting that one down, and then I go back for the other. Back and forth. So I ended up walking 2 miles, but who cares…I have to get to the terminal early enough to find an ATM.
*Amusing side note, I have no money. Scratch that, I have $1.30. The water taxi from Bremerton to the parking lot where my car is costs $2.00, cash only. I need an ATM, so I can get out $20, and then find something to buy so I can get change.*
We get to the Seattle terminal in good time. Phew. I find the ATM. It’s broken. There’s one down the street next to Ivar’s Restaurant, the nice lady at the information booth tells me. No way in hell am I taking my kids on another walk. Forget it, I’ll find an ATM in Bremerton, and get change there, no big deal.
By this time, the 2 year old is so tired, she keeps lying down on the dirty floor/ground/whatever. My ASD kid has had a complete melt down, which for her this time meant that she has collected some trash/leaves/flower petals and is sitting next to the two year old (where ever she is), and is making piles and talking to her trash. She has shut down, gone into herself. The world is way too big & overwhelming for her little autistic brain.
Mommy feels guilty.
I use my debit to buy our Seattle-Bremerton tickets; and look, there’s the ferry! I drag them on, we find a place to hole up for the hour crossing. The girls are just starting to relax, when I note that the ferry left earlier than scheduled. Huh, weird. Well… that means we will get home sooner than I thought. Good news. Thirty minutes later, they announce that we are at our final destination, get the hell off the ferry. Ogawd. Nonono. Dread. Please say I didn’t…Oh no. I did….
See, here’s the deal. I have traveled, mostly alone, for 20 years. Foreign countries, planes, trains, boats, they don’t faze me. Have I messed up while traveling? Many, many times. But never while responsible for two small children. So here we are, on Bainbridge Island. Which means I am forty miles away from my car. There is no service to Bremerton from Bainbridge.
See, I told you this was a funny story! Whee!!
A nice ferry worker tells me to either take the Bainbridge Island ferry BACK to Seattle, and then wait for the 3pm crossing, or find “alternative” transportation.
I call a cab. I can legally put the kids in a cab without car seats, which I do. They are so worn out by that time, they don’t even notice how easy it would be for them to get up and roam around the taxi van. They fall asleep, heads lolling around all over the place, before we even get off the island. A shocking amount of money (and a great conversation with the cabby later) I’m back at my car.
I get there at the same time I would have, had I actually gotten on the correct ferry to begin with.
Now, in my defense, I’d never used that ferry route before. When I first moved to area I took the the ferry’s a few times, but soon learned it was just easier to drive. But this time, I had something to prove. For this event, I wanted an adventure! O, pride goeth…
So, I’m an idiot. With two dependents. What a great combination!!
That was Saturday, 7 am-3 pm. We went home & fell into bed for an hour. Then I took a shower, a babysitter came over, and I ran out the door to drink. Don’t remember much of Saturday evening, but I’m sure I had fun.
A’s first ferry ride to Seattle, 13 mons old:
She still loves the ferry. Here’s a pic I took of her on the water taxi we actually won a prize for:
This is a subject I’ve only heard of spoken with shame & frustration. It would be great if we could keep an open dialogue about this subject, so other parents don’t feel as deficient as I did. My NT friends were horrified & disgusted when I told them about it, so I learned to not to talk about it. Big mistake, information sharing is key.
My kid loved to play with her poop. LOVED it. I can imagine what was going on in her little head: So squishy, so fun, you could cram it anywhere & everywhere! And wow, watch how it makes Mommy react!! Smell? What smell, its just stuff from my bottom right?
For three years I dealt with that shit. Literally. From 18 months to over 4 years old I waged war with her little questing fingers, and her desire to redecorate her purple bedroom to a crappy brown color.
Here’s what I did:
1) Ignored it. That’s right, I ignored the behavior for a couple months, thinking it would stop, just go away on its own. Just cleaned her & the mess up, then hoped for the best. Denial, thy name is mine & thy behavior is comfort. And dumb.
2) Neurotically checked her diaper for bowel movements every 30 minutes. I could never seem to get it right, so then I…
3) Purchased a dozen zip up pajamas & cut off their feet. Put child in backwards. That’s what she wore at home, 90% of the time.
4) Baby diaper safety pins. These were for pinning shirts to pants to restrict access. Also, once she learned how to reach behind her and unzip the pajamas (!!), I used one to pin the zipper up.
5) She didn’t wear dresses or skirts that entire time, except for special occasion pictures; then for limited time.
6) Why didn’t this exist back then?! They literally came on the market five minutes after I didn’t need them: http://littlekeepersleeper.com/store/Default.asp
Ya, the Little Keeper Sleeper. I remember emailing the inventor, desperate for a early sample so I could be one of his Beta testers. No go *sigh*
At nearly 5 she became (mostly) potty trained, and poop lost some of its appeal. Yet is it any wonder that even today, several years after these “incidents” stopped occurring, that I won’t allow Play-dough in my home, for fear it will cause a “re-lapse”?
So, what have you done to deal with this?
The first month of school has been hard. After three years of the blessed cocoon of designated Special Ed classes (2 years of Developmental Preschool, 1 year of Developmental Kindergarten), it was decided to put A into an integrated 1st grade class.
I hated the idea. Other kids, at best, ignore A. At worse, they yell at her for being so loud/disruptive/annoying/destructive/etc. How could I put her in a room with those little monsters?
How could I live with myself for not pushing her limits?
So off she went, pony tail bouncing, eyes shining. So…normal. By day three she had stopped eating & had ripped out all her eyelashes (again). The teacher said she was mostly doing good, but was having a hard time following the class rules & structure. We all expected that. The teacher compensated by letting her go off by herself at times, and then had me come in to the class to explain A’s “condition” to all the little 6 & 7 year olds (more on that later).
She calmed down. She started eating again.
This week, they upped the ante. The Special Ed teacher & the First grade teacher decided it was time that she start wholly & completely participating in the classroom structure.
Day 1: Didn’t eat. Anything
Day 2: Bit the teacher
Day 3: Eyelashes gone. The wiggly tooth not quite ready to come out…was ripped out. Blood all over the bathroom.
Day 4: Was her best morning. Did perfect following class structure, participated in everything the class did :). Then at recess after lunch, she slapped her baby sister across the face on the playground in front of 3 adults. If it hadn’t been her sister, things would have turned out differently. But given that relationship, and her IEP, she was only suspended. What they call an “in-school” suspension, sitting in her SpecEd classroom (where’s the punishment in that, lol)
Day 5: Today. It’s 9:30am, and I’m on the edge of my seat.
Pervasive Developmental Disorder, Not Otherwise Specified is part of the Autism Spectrum Disorder (ASD).
It is a diagnosis given to an individual who displays some features suggesting autism, but does not fully meet the criteria. Usually an individual with PDD NOS does not have intellectual delays, thus their behaviors are often mistaken as stubborn, selfish or defiant. However, it is a neurological and developmental disorder and does not result from lack of discipline. Characteristics of PDD NOS include repetitive behaviors and activities, obsessive interests in specific topics, difficulty interacting with peers, and/or impaired verbal and non-verbal communication skills.
There is no known cause. No cure has been found yet.
(blatantly stolen from Cafe Press)