You know you’re the mother of an autistic child when…

One of the boards I read has a thread going right now titled “You know you’re a special needs parent when…”

My contribution:

You decide fictional characters have conditions similar to your child. “Remy from Ratatouille is so on the spectrum. He’s not into the social aspect of his rat colony at all, he has extreme sensory sensitivities, he perseverates on gourmet food and cooking and he has vivid mental ‘conversations’ with Auguste Gusteau, the chef he is obsessed with.”

jump start book, chocolate pretzels

We are participating in the MDC Holiday Helper this year, and Bede is enjoying one of the anonymous gifts we received (because he saw me open it and glomped on it immediately, silly me!)

It’s a preK phonics workbook, and he looks so cute sitting at the table doing all the little activities. He’s gotten much better at following instructions lately, and if I demonstrate the first one, he grins and happily imitates, then looks at me as he finishes each one.

Thank you, Holiday Helper! One happy little hyperlexic boy here!

Today Faith and Abby made the easiest chocolate treats, as follows: one Hershey’s Kiss atop one pretzel. Bake at 350 for 3 minutes. Place m&m atop both, squish.

It might be even better with another pretzel instead of an m&m. And I just remembered that Faith used to call pretzels pencils. Ha!

Asperger’s joke

A guy is flying in a hot air balloon, and he’s lost. He lowers himself over a field and calls to a guy “Can you tell me where I am and where I’m headed?”

“Sure. You’re at 41 degrees 2 minutes and 14 seconds North, 144 degrees 4 minute and 19 seconds East; you’re at an altitude of 762 meters above sea level, and right now you’re hovering, but you were on a vector of 234 degrees at 12 meters per second”

“Amazing! Thanks! By the way, do you have Asperger’s Syndrome?”

“I do! How did you know that?”

“Because everything you said is true, it’s much more detail than I need, and you told me in a way that’s no use to me at all.”

“Huh. Are you a clinical psychologist?”

“I am, but how the heck did you know that??”

“You don’t know where you are. You don’t know where you’re going. You got where you are by blowing hot air. You put labels on people after asking a few questions, and you’re in exactly the same spot you were 5 minutes ago, but now, somehow, it’s my fault!”

Via Hard Won Wisdom

While I’m at it

I can’t remember how much of this I’ve already blogged (because my mind is a sieve) but Bede’s made some great developmental leaps lately. I knew the sensory seeking wildness would ebb eventually, and usually he has a surge in abilities when that happens too.  I tell you, remembering that when we were in week 4 of the “Bede hides, poops on floor, grabs poop, throws on ceiling. Repeat in 6 hours or less.” cycle was about the only thing keeping me from crawling into bed and staying for a month. Ladies and gents, it was bad.

But now he’s not doing that. (Knocking on wood.) Instead he’s building representational structures with blocks! (see below.) And, when I say things like “Bede, hand me that cup,” he’s, you know, handing me the cup! Also, he’s following 2 and 3 step written instructions in coloring/activity books! (he’s always been better with written vs. spoken language, of course.)

In other words, he’s forging those neural pathways in a huge way. Yay Bede! You rock!

(ha! rock! Get it? I slay me.)

heavy work

Trixie is pushing the dining room chairs around the living room. She likes them to be resistant to her pushing, so she lines three of them up together and pushes them like a train. She also likes to lift the futon mattress. I got a couple bags of yarn from a friend who got them at an estate sale, and Trixie is also dragging them around.

Ladies and gents, we have another sensory sort of kid in the family.

Bede’s our prime example: dislikes clothing, loves water, craves muddy/slimy textures but hates dirty hands, runs in circles, likes jumping and rough and tumble play. All of those things to a great extreme not seen in a typical four-year-old. Mostly sensory seeking with some avoidance.

Then there’s my sweet Abby: mildly claustrophobic, hates tight clothing, closing her eyes, kisses and other light touch, hair washing. Likes being held, but not restrained. Mostly avoidant.

And now the Trix. Wonder what else will pop up? Ah, parenting…

lovely Thanksgiving day

Well, our Thanksgiving was wonderful. Our dear friend Kenny came down from Wichita and along with my parents were our guests for our first Gleeson House Thanksgiving.

We decided that it would be too stressful for everyone to go to my parents’ house, which is what we’ve always done in the past. First of all, there are seven Gleesons (at last count) and only two Harrises; simple math shows that it’s easier for them to get here than for us to get there (although “there” is only a 20 minute drive.) Secondly, one of the seven Gleesons is autistic, and two others are aged three and one, which are factors that make a sit-down semiformal meal in a non-childproofed house very daunting. Add in the fact that the autistic boy prefers nudity at all times and you have a recipe for a possibly resentful, tiring and unfun time.

All taken with all, it was much better for them to come here. So they did, with pleasure. Chef Sean made roast turkey, stuffing, potatoes, giblet gravy, Kenny brought chocolate cake, Fat Tire beer and wine, I managed cheese, veggies, fruit, green bean casserole, my mother brought pies and deviled eggs… probably more that I am forgetting. Everything was delicious and the company was superb.

Happy Thanksgiving, everyone!

Autism and “low functioning”

Last night, Anderson Cooper had a segment about autism. I didn’t get to see it, but it featured two autists who could possibly be described as “low-functioning,” “retarded,” “slow,” “feeble-minded,” etc… but for one thing. One wonderful, beautiful thing.

They know how to type, and knowing that, know how to communicate.

Now, before there was such a thing as typing, (or, frankly, before these people learned to type), they would have been written off (no pun intended.)  But they were just as smart before they typed – the basic intelligence was there whether or not they could figure out a way to share it with anyone.

It brings it all down to this: presume competence. Presume understanding. Autistic people are not empty shells, or “normal” people trapped inside autistic walls – they’re quite simply autistic people. When offered the right tools and help they can navigate the world. After all, we all need help and tools. It’s just that the tools autistic people may need are different.

I’m told Anderson Cooper will have another segment on Friday, on CNN.

Floortime, all the time

This is a post for my favorite special needs support forum, to answer the question “How much Floortime do you do with your autistic child?”

Our day looks something like this:

  • 8AM: Wake up, usually by Bede crawling into bed with me.
  • 8AM-8:20: Bede and I Floortime play in the bedroom together while the other kids eat breakfast with Sean.
  • 8:20-9AM: Bede and I make our way downstairs to join the others and eat.
  • 9AM-12PM: Sean works upstairs in his office and I do householdy chores like dishes and laundry while playing with the kids, checking my email, etc. Sometime in there is…
  • 10AM-10:20: More Floortime with Bede.
  • 12PM-1PM: If Sean isn’t teaching an afternoon class, he comes downstairs and fixes lunch for everyone.
  • 1PM-5PM: Trixie and sometimes Gilbert nap for an hour or more. If the big girls are gone (on Wednesdays) I play with just the littles, and have 2 Floortime sessions with Bede. Also do more household stuff.
  • 5PM-7PM: Dinner is planned, cooked and eaten.
  • 7PM-10PM: Children are bathed as needed, if I’m lucky I might get to watch some PBS or knit for a while. Bedtime is at 10 or so. Bede loves bathtime Floortime, and we do that.
  • 10PM-11PM: Winding Bede and Trixie down – they are the real night owls – and 20 minutes more of Floortime where we usually play on a free font site or wander through Google Images.
  • 11PM-??: I attempt to stay awake. Hardly ever happens.

So we end up with something like 2-3 hours of focused Floortime every day, and lots of smaller Floortime-style interactions throughout the day. It works really well with our ‘lifestyle’ such as it is.

it’s all about the joy

Today I gave Bede the lid to a Pringles can. It’s made of transparent plastic and feels like HDPE, but I don’t know if that can be transparent? Anyway, it’s see-through.

Bede loves see-through things. Last year for Christmas I got him the water blocks by Plan. He loves them, and frequently carries one around and peers through it at the TV or the computer, or lays it down on a book and reads through it. He also likes to get our playsilks wet and compare how things look through the wet, translucent silk and the dry, opaque silk. My point is, the boy likes to look at stuff. Optics. It’s all about the optics.

So, back to my original point. I finished off the last of the Pringles (hey, I’m pregnant. I get a pass) and was about to chuck the can and thought to myself, “Bede would really like this lid.” So I went in to the living room where he was at the computer, and said “Hey Bede! Look here what I’ve got!” holding it up. His eyes widened and he jumped off the computer chair, ran over to me, took it from my hand and laughed! He immediately dropped to a squat, grabbed a magazine (it was November’s Smithsonian) and chuckled happily as he read to me through the lid for about 30 minutes.

So what if he couldn’t care less about action figures? He’s one happy and unique little guy.


We just got Ratatouille today. Well, last night. Really like it, btw. But that’s not why I’m posting.

First of all, we only have it because my mother bought it for the kids for a Christmas present. Then she said “It’s silly to make them wait for CHristmas, especially the younger three. Here!” My mom is so great.

Second of all we actually got to watch it! Now, that calls for some explanation. Usually when we get a new movie we don’t get to watch it for weeks, or even months. Bede refuses to let it play downstairs, so it doesn’t get played. The big girls and Gil watch movies upstairs in the girls’ room on the tiny TV, so nobody gets deprived, but we’d all rather watch on the nice TV downstairs. When we tried to watch Chicken Little, Bede screamed through the first 15 minutes and fought whoever was holding him so he could go eject the disc. Same with Brother Bear. So, I’d given up, really… but! I thought, hey, try again. He’s changed a lot recently, maybe he can handle this.


I gave him the box to look at while he ate lunch, so he’d know we had it. Then, I started it. He was very upset at first, but responded to “Bede, stop!” when he ran for the player. He also tried to offer other solutions, to watch other movies instead (Toy Story 2, Mickey’s Twice Upon A Christmas, Cars) which let me know he was in touch with his language. At that point I took him upstairs and let him play in the shower for a few minutes. WHen he came back down, he made one lunge for the DVD player and then just lay down on the sofa and watched (and enjoyed) the movie. When it was over he played it again.

I know if you don’t have an autistic child you might think this is no big deal, but really, it is.

Anyway, cute movie!


Tonight Bede followed the directions in a kids’ activity book! My mom called me a few minutes ago to tell me about it. We ate dinner at my folks’ house as we usually do on Sundays and Bede was writing one of those books for quite a while. She was flipping through it and looking at what he’d written, and came to a page that said “Draw two wheels on each car. How many wheels are there?”

Bede had drawn two wheels on the five cars on the page (which is new, he doesn’t draw as much as he writes) and then wrote “TEN” next to them.


While he’s had those cognitive skills for some time (Bede has no noticeable cognitive delay) he has never followed directions like that before, ever. Maybe all this poop sensory seeking stuff is due to some new neural pathways a-forming.

I think it’s time for some fun social stories.

vague update

Well, again it’s very late and I don’t have much time to blog.

Today was a good day. Still with the poop problems in the Bede division, but we’re slowly twirling, twirling towards freedom. I think.

In other kid news, Faith is managing to be very helpful and grown-up one minute and thoughtless  and scatterbrained the next. Reckon that’s normal. Poor kid gets to be my learning curve. Abby is still just truckin along. She’s been on a very even keel lately, which is nice. Gilbert is a man of drama! and Trixie is, well, actually she’s in my lap now so I can’t type. But good. And the new person is presumably happy and well in utero.

My left arm is fatigued from one-handed typing. That’s all for tonite.

emotional day

I had such a day today. I cleaned up poop several times (see below) and was so sad. I’m happy to report that at no time did I feel resentful of Bede. I know he can’t do any differently than he’s doing right now, or he would be. I’ve had to work to get to that point of no resentment, and I’m not always there, but it’s a much better place to be.

I looked at my first RDI assignment and I just don’t know when I’ll be able to get to it. It’s a fifty minute Adobe presentation/slideshow thingy and I have to watch it on the computer I share with Bede. I wish I could either just read it like a regular web page or watch it on my TV. It’s very difficult to watch video on our computer because it really upsets him. I think I’ll just order the book Autism Aspergers: Solving the Relationship Puzzle which should do it. Gonna have to wait a bit cause I’s broke.

Then I was okay. After cleaning the poops I mean. He’s been so sweet today, even more affectionate than usual, which helps a lot!

Tomorrow our friends L and E are coming to see us. We’re excited about that! E is Faith’s age and just all around a great kid. She’s an only child so I know our vast noisy crowd must be a walk on the wild side. We’ve been looking forward to it for ages because we had to reschedule due to doctor appointments, then Halloween… now finally!

Huh. I think Bede, in his ever more complex ways to get me off our computer so he can steal it back, has emptied his clothes drawer and is now throwing the clothes down the stairs. (Seriously he has a whole schedule of diversions to get me to get up. It’s pretty funny – and pretty interactive. Goofy kid!)

The straight poop

I’m really, really tired of cleaning it up.

No, really. You don’t even know. Be glad you don’t know.

We’ve been ‘working with’ Bede for over a year with zero success. Well, sometimes he’ll attempt to clean up a mess he’s made, which, while a positive step, is also even a bigger mess. Trust me.

I’m at a loss. It’s a communication issue, I think, which means it’s going to resolve eventually as he gets more and more among the English-speaking. It’s not sensory because he knows mostly when he needs to go. I think.

But for now…


Bede and writing

Candace noticed, in my Flickr set Bede writes:

i also thought it was interesting that when bede was copying those words, he did some of them in all caps and the words were written in lower case…!

He started writing this summer. My mom got him those books on a lark, and he loved them! He’s been typing forever, years, but that was almost the first real writing. Faith taught him to write with his finger in a steamy bathroom mirror, and a few days after that he wrote in the books. He started out almost all caps and now uses mostly caps, but sometimes Writes Like This.

He likes to write on things to label them, too. (I have cleaned lots of crayon this summer!) He uses sidewalk chalk, an old favorite, to write on everything in the backyard. Some are what you’d expect, like DOOR and SIDEWALK, but some are more indirect, like first writing HOUSE on the wall, then writing WELCOME TO MY HOME. Or writing FARM on the fence right above our pitiful flower garden.

So, let’s hear it for hyperlexia! His language is still much more visual than spoken and that’s fine with me. Any communication is good communication IMO.

ETA: I just realized that was noteworthy to you because he wasn’t copying the words exactly, but copying them nonetheless – i.e., he copied the words but in uppercase instead of lowercase. Yes? I didn’t think much of that because he’s known letters for so, so long it didn’t occur to me. The writing in the books was all his idea. I didn’t say “Now write ‘blue'” or anything.

RDI, here we come

So I’m sure most of my readers know that my son Bede is autistic. He’s pretty impossible to sum up so I won’t try. We have been doing Floortime with him for about a year now, sometimes a lot, sometimes a little, and we’ve seen HUGE gains over that time. Some of the gains are due to the focused nature of Floortime and DIR interaction and some of them are due to the natural development of a little boy. Autistic children are no more frozen in developmental time than any other child and even if we’d done nothing Bede would be a different boy than he was a year ago. But that said, Floortime is fantastic stuff.

So now we have come to the time where we are ready to add the semi-structured component of Floortime. Up to now my work with Bede has been almost entirely child-led as I sought to find a bridge to his worldview, his way of seeing things, his joy. Thanks to Floortime I found it! He’s attached and connected to me and it is wonderful to be there. Before Floortime I felt like furniture sometimes. Now I still feel like furniture when he climbs on me, but it’s a good kind of furniture.

Floortime and the DIR model mesh with RDI beautifully, at least from my outsider perspective. Floortime has thus far been almost free, money-wise. My only cost was about $50 in books: The Child with Special Needs and Engaging Autism, both by Stanley Greenspan. I’m the ‘therapist’ in the DIR model and the thing it takes is TIME. Lots of time. So does RDI – about the same amount of time as far as I can tell (Something like 2-4 hours a day, when you can swing it.) The difference between RDI and Floortime seems to be mostly that RDI has a cookbook approach to activities with your child and Floortime has a much less delineated feel. Sort of like the difference between climbing a mountain and climbing a staircase, I think.

RDI costs money though. Lots less than the most common autism intervention, Applied Behavioral Analysis (we do not think this approach will work with our family so we are not considering it at this time) which can run over fifty thousand dollars a year for an intensive program. RDI should cost us something like three to five thousand dollars. We (read: I) will be doing ALL the actual therapy, and our money will go to our consultant for an indepth assessment and individualized program for Bede, ‘troubleshooting’ when we run into walls or snags, and ongoing video review. I say I will be doing it all because I am the primary Coach, in RDI lingo. Sean will be secondary and he gets to watch all the training materials etc. but won’t be doing too much of the actual activities with Bede for a while. He gets to just ‘be’ with him, which he’s great at.

I’m daunted by the whole process, honestly. I know I can do it, I know WE as a family can do it, but whew. Whew. It’s a lot of money for us (we will only be able to do it with a consultant if Bede qualifies for SSI, otherwise we will be unable to pay) and paying money makes it more real, somehow. Futzing around on my own is one thing, committing to this is another. Daunting. But we’re up to it! WE CAN DO IT!

OK, I’ll wax philosophical more later, and talk about our consultant-to-be. Bede needs me!