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.”

Gilbert explains it all

Gilbert was telling me about the new baby the other night.

He said the new baby is a boy. Then he told me something that made me puzzled.

“Da new baby wants a bottle.”

“He does? Won’t he want to nurse, too?”

“No. Because dat is my nurse (pointing to left side of my chest) and dat is Trixie’s nurse (pointing to the right.) Da new baby has a bottle.”

“What would you put in the bottle for the new baby, Gilbert?”

“Umm…chocolate milk! No, no. EGGNOG!”

“But the new baby needs nurse, Gil. Babies need to nurse from their mamas.”

“Oh-kay. Sigh. Oh! Da new baby can use Trixie’s nurse!”

(I think we’ve seen to the heart of the matter, no?)

the eyes have it

Gil’s eye is okay. We learned he’s farsighted, and his pupil reactivity is within the realm of physiologically typical. Yay!

He was also so good! The doctor was overbearing and too loud, but Gil stayed the course. It helped that the person who did his first exam (a nurse, I guess?) was gentle and quiet.

I’m VERY farsighted in my left eye, so much so that it’s legally blind. My right eye is mildly farsighted and getting worse as I age, alas. So we can blame me for that one. We were told to watch his eyes and if they start to cross when he’s focusing on near things then he’d need glasses, and he’ll probably need them sometime, we just don’t know when.

So there you go.

In other news, I’m knitting mittens for Faith. Nothing but excitement around here, I tell you! I had other things to say but for the last minute Trixie has been crying that “waAAAh! waaaAAAAh!” sort of klaxon sounding thought-destroying cry because I won’t stop typing and pick her up. If I remember what I had to say (doubtful) I’ll come back.

so tired, medical updates

I am so tired. Stupid tired. Yawn.

I slept really poorly last night because Trixie was restless or awake all itchy from her eczema from about 3 to 6AM. We all got up early, around 7ish because she had a doctor’s appointment at 8:30.

I know I sound like a weenie to be complaining about getting up at 7, oh the horror! but it was the lack of sleep that’s done me in.


She had an appointment to get her left leg X-rayed because it bows out significantly. The doctor said it needs watchful waiting and will likely self-correct as she grows, so that’s good. The bad news was the waaaiiiiiiting we did. We were there at 8:30 and finally seen at 10AM. Gah. State insurance means doctors book about ten people for the same appointment time. Sucks to be the last one they get to, especially when you have a 22 month old.

She was so. good. though. Really, she was like a model baby. Such a good girl. Sean came too and she’s always so happy with him around. My mom kept the other four at home.

Tomorrow we get to go for Gilbert, who has one pupil that stays dilated when he’s tired. Opthamologist in Edmond. I wonder how compliant he’ll be? Sean’s coming to this one too (he likes to go to doctor appointments when possible) and I bet he’ll be needed to cajole Gil, who can be, um, resistant. Especially with me. Sean can get the boy to be laughing and happy where I get “No! I don’t! No! NOOOOO!” Again, such a good daddy…

But Gilbert’s appointment isn’t til 1PM so I get to sleep. Thank goodness.

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!

birth prep

I need to gather together my birth supplies and otherwise prep. I’d homebirth anytime after 36 weeks, which is like 2 and a half weeks away! Before 36 weeks I’d birth in the hospital.

I’m gonna make a list to gather up:

  • Chux pads
  • Cord tie
  • 2 painter’s dropcloths – much sturdier than the tablecloths I used last time.
  • Bath towels from thrift store, can always use more
  • Oooh! Almost forgot! Big disposable heating pads, the kind for back pain
  • All my post-birth voodoo rememdies for afterpains: herb teas and tinctures, heating pad, and of course Tylenol.
  • Clean sheets
  • Blankets

And to do:

  • Wash newborn dipes, covers and clothes
  • Knit a wee hat for postbirth photo op 🙂
  • Find my cloth postpartum pads… where did I put those…
  • Give birth!

Gotta be more than that… hmm.

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…

christmas, oh, christmas…

So Christmas is coming and the goose is getting fat.

I’m going to list some kid gift ideas here. It’s tougher this year because no China, thanks.

  • Unit blocks. Melissa and Doug make a nice set.
  • Playmobil will be making the bulk of our little figure play toys. They don’t guarantee China-free, but less than 2% of their toys are made there, and they own the manufacturing facilities.
  • Faith wants a bead kit. Not Aqua Dots, thanks. Hmm. Ah! These are made in the US. I think we have a winner.

I’ll be updating this one throughout the day.

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!

Random bits

You can download entire episodes of Super Why! from iTunes, for free. Search Super Why.

Gilbert is asleep on my foot, like a puppy. Aww.

I’m 31 weeks! Wow!

I’m off merino unless I know exactly where it came from – no NZ or Oz wool for me please. Mulesing is just too brutal the way it’s commonly done. I’ll leave you to google.

Hmm. Had some other stuff, but Trixie is crying. Ta!

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.


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.

knit in Danish is strik

I think. And purl is vrang. I think.

L and E came today, you see, and L (who is from Denmark) was trying to turn the heel on a sock, for the second time ever, and her mom had written the instructions in Danish. I was little help, beyond vague statements like “well, you know, you go past the halfway point, then back, then you keep doing that until you kind of, you know, run out.” So I wasn’t that helpful, but hey, I made her laugh really hard as I pronounced the Danish as Okie English. Snort.

Faith, Abby and E played upstairs together for hours without a discouraging word. E was so sweet to Gil too, and he really liked her. L and I were treated to a puppet show ostensibly put on by the three girls, but Gil crashed it (I told them it was improv. He was VERY funny.) Bede was his unusual self and had a good time drifting about on the fringes. ‘Drifting’ implies a certain lassitude which he didn’t have. Hmm. Anyway, he had fun too. And Trixie was completely unphased by our visitors, which was a welcome change from the Velcro baby she can be.

So, all in all, a very good day.

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!)

nightly ritual

Every night, sometime between 3 and 5 AM, my son comes galumphing into my bedroom and then my bed like an outsize puppy.

Startled from sleep still I move quickly, lifting him to the other side of the mattress before he can awaken his brother and sister, my bookends already there. We settle in. He is silent, aside from the occasional soft sleepy warbling he has made since he was a babe. He’s pressed tight to my side, and he’s chilled, so he welcomes the blanket without complaint and kicks. He sighs and is asleep again in less than a minute.

Usually I am too but tonight I creep out of the room to write. Three small children await me upstairs now, three small bodies to twist myself around like a contortionist, three small people dreaming their own big dreams. I’ll join them soon.