With some regularity, conversations come up about what ‘autistic stuff’ J-Man does and doesn’t do. I know some of these are stereotypical traits, but many of these come out of evaluations and the various ways we’ve tried to figure out his diagnosis.

So for the benefit of our readers who are wondering whether their kid is similar to ours, here’s a description of him and what he does, kinda does, or doesn’t really do. We’ve been recompiling this for his upcoming (re-)evaluations and preschool/IEP stuff, so we thought we’d share.

Obvious disclaimer: This isn’t a substitute for having your child evaluated. You are parents and you know your child better than anyone. If you suspect there might be a problem, trust your intuition. We are not advising you on how to evaluate your child. Go get them evaluated. Don’t just rely on some random people on the Internet. You’re smarter than that.

Reminder - he’s a bit over 2 1/2 years old. A doctor (psychologist with a bazillion years of experience at evaluating kids) diagnosed him with an autism spectrum disorder. He said that at J-Man’s current age, labeling him with “mild”, “moderate”, or whatever wasn’t terribly useful and likely to be inaccurate. He’s also been diagnosed with sensory processing (or sensory integration, depending on who you talk to) issues, apraxia, and motor planning issues, among other delays.

Significant issues he has:

• Severe speech delay - Obviously, yes. We figure he’s going on 18 months behind. The belief is that he has apraxia, which isn’t at all unusual in autistic kids.
• Communication problems - Struggles to communicate in other ways, too; sign language, etc. isn’t in his repertoire. Unless he can pick it up and bring it to you, he has a very hard time asking for things. He also will use your hands to do stuff rather than his own, which is something we discovered is a characteristic of autism.
• Rarely points at what he wants - That’s pretty self-explanatory. He tends to use much more broad movements, which are very difficult to figure out.
• Hand/arm flapping - Flaps his arms when he gets excited or overstimulated. Primarily he does this in the car (the moving scenery apparently is too much for him to take in) and in places like the store (especially ones like Target that are bright, busy, and red). It’ll also happen if he’s watching some TV show that gets him excited. Interestingly enough, he usually looks happy while he does it. The suspicion is that this is a lot of ’sensory overflow’ and doing this helps him order and calm his system.
• Learning problems - We don’t know cognitively where he is because he’s hard to engage in those sorts of activities, but he definitely does way better at puzzles and things like that when he’s calmer. We suspect he knows a lot more than he’s shown.
• Eye contact - Pretty poor, but it seems to be getting better lately. We can get a few seconds of it with people he knows well, not so much with strangers. He definitely is better with this when he feels pretty balanced sensory-wise.
• Sensory problems - Oh yeah; feeding, vestibular, proprioceptive are the biggies. We’ve known he’s had sensory integration issues since forever, and they still affect him a lot. The last couple of days he’s taken up sucking his shirt to soaking again. Yuck! He still loves exaggerated movement (throw over your head, swinging outside, bouncing on the exercise ball) and seeks out deep pressure (big hugs, firm back pressure). He also sleeps wedged in the corner of his bed and was a total swaddle baby. He finds sticky or slimy stuff on his hands really icky (finger paint = yuck). He dislikes most food textures, and will gag at ones he really hates. He’ll sometimes gag when he’s sensory overloaded regardless of what negative sense it is.
• Seriously picky eater - Eats just about nothing except toast, chicken nuggets, crunchy stuff like chips, and purees. He also has some reflux, but that’s minor at this point so I doubt it affects much here. No other GI issues have been indicated.
• Lack of imaginary play - He doesn’t really engage any of his toys in this way; he can be playful with others but I wouldn’t really call it imaginary, nor would I call his play with his peers consistent or much like what you’d expect for his age. His level of play is very cause-and-effect, meaning he presses some button and the toy does something back at him. It’s a much more literal way of interacting, which is another common autistic trait.
• Social awareness - He usually doesn’t acknowledge other kids in the room, but he’s pretty good with adult women (he’s pretty flirty). At preschool, he’s typically off doing his own thing.
• Joint attention - The fancy term for wanting to share with you something he finds very interesting. Example: Child sees a car, picks it up, shows it to you, and then looks at the car and then at you to make sure you are seeing it with him. J-Man does this very rarely, which is another characteristic of autism.
• Responsivity to order in learning - This isn’t so much an issue as it is a common strategy for autistic kids, but he responds very well to doing his ‘learning work’ in an orderly environment, at his little desk, doing specific tasks, without a lot of distractions. Imposing structure has dramatically helped out with his learning and growth.
• Travel - One or more nights away sucks; in the car is normally fine; he just won’t sleep well at all anywhere else but home - two nights away is pretty much our limit before everyone is sleep-deprived and mental.
• Fine motor issues - He has a very hard time manipulating certain objects; e.g., hard to feed himself with a spoon without a lot of help, though he has made great strides in the last week.
• Motor planning - He has a hard time figuring out how to accomplish many tasks, and only occasionally will successfully do something you ask him to do. If it requires a sequence of more than a couple of steps, he pretty much can’t do it yet. “If you’re happy and you know it stomp your feet, clap your hands, and shout Hooray!” is incredibly frustrating for him. You can see him trying to work out how to do it, but his body won’t comply. Yes, it really pulls at my heart to watch him struggle like that. We’ve wondered whether this has made sign language nearly impossible for him; we’ve been trying for over two years. That said, he has made great strides (literally) in the last week or so in going up and down steps by holding on to a railing or your hand. This is a major leap forward for him.
• Responding to his name - This is sort of borderline to me, but he doesn’t do this that well; it’s not so bad we can’t work with it, though.
• Walks on his toes - Yep, but usually only in short intervals.
• Poor muscle tone in his trunk/core muscles - In his arms and legs, he is as strong as an ox on steroids, speed, and Starbucks, but he ain’t going to be on 8-Minute Abs any time soon. Related stat: I weigh 225 and he has knocked me flat on my butt from standing.
• “Flight Risk” - If you put him down, he’s usually going to take off running. We’d never be able to set him down in a store or a mall. If we did, he’d be off to the races. This happens outside too. It’s exhausting to say the least.

Issues that aren’t too bad:

• Fixation or attachment to a particular object - He was pretty attached to Glo-worm and his Leap Frog caterpillar early on, and now he’s pretty fixated on his piano keyboard and other things that make music, along with some of his books. He can get pretty zoned out on them, but not so bad that you can’t break him away from it with some effort or that he doesn’t get up eventually and go do something else. We do have to sometimes hide whatever it is so we can keep him focused on us enough to do his therapy work when the zoning out gets to be a problem.
• Emotional awareness - He’s pretty good with understanding people’s emotions, especially when people are laughing or are sad.
• Sensitivity to routine - We do keep a routine, but mostly out of habit from back in the days he wouldn’t sleep and because it helps him learn better; we can vary it without any real issues as long as we’re not out of town and as long as we give him some downtime in the afternoon.
• Needing physical order - It’s very important to him to have all the doors closed wherever he is. This is annoying sometimes, but not a big deal in the grand scheme of things. I’ve noticed that there are a couple of toys he wants in the ‘right place’, but why these few and not all the others is a mystery to me.
• Sleep issues - Rarely naps anymore but does sleep through the night (12 hours on average); this is SUCH an improvement over the first 18 months when he never slept through and often got up every 2-3 hours.
• Gross motor - He was a very late walker (almost 23 months) so this used to be a real problem, but he’s pretty self-reliant with this now even if he’s still a bit behind. He definitely has his own style, but he rarely falls. Going up and down steps upright (though still with a lot of help) is a recent highlight. There are a lot of steep stairs around, and heights freak him out, so this is a real challenge.

Issues we haven’t really seen:

• Regression - His development has been very slow on various fronts, but he still has steadily improved. We have setback weeks from time to time, but our overall trajectory is toward improvement. He didn’t have a bunch of words and skills and then lose them like some.
• Self-destructive behavior / self-injury - He’s smacked himself in the head a few times, but nothing at all that we’ve worried about. I can’t even remember the last time he did this.
• Uncontrollable tantrums - Never; he does a great job dissipating his frustrations and rarely pitches a fit for more than a couple of minutes. He does some pitiful drama and then we move on.
• Repetitive behaviors - Very little except for the hand/arm flapping.
• Lining stuff up/compulsive organizing - Pretty much never. Our house is often a wreck and he doesn’t seem to care. Like I said before, he has a couple of things that seem to have a ‘right place’, but it’s so minor that it barely registers as anything more than a quirk to us.
• Fixation on orderliness - Doesn’t seem to care if we move stuff around.
• Detachment - He’s very attached to us, loves being with us, and often wants to be held. If you’re familiar to him, he’s very loving. He’s hit or miss about strangers, or even acknowledging that they’re there.
• Aggression - We’ve had it repeated to us several times that an aggressive act is not the same as aggresion. He’s so fidgety sometimes that he can be rough as he rolls all over you rather than sitting still. That said, he hasn’t struck out in anger that I know of.
• As far as we know, his hearing and vision are fine based on previous tests.

Phew. Got all that? We’d love to hear how your child is similar or different from this. They don’t call it a ’spectrum’ for nothing, and there’s so much for all of us to learn. I didn’t even cover a bunch of stuff. If you have questions, feel free to ask!.

I cut J-Man’s hair yesterday. Go back and re-read that first sentence again so you can understand the enormity of that statement. I’ll wait.

[To really get the full magnitude of this, see previous hair installments here and here.]

I cut J-Man’s hair yesterday, and it looks decent. I cut J-Man’s hair yesterday, with clippers. I cut J-Man’s hair yesterday, and he didn’t completely flip out, although he wasn’t the HAPPIEST kid in the world. I cut J-Man’s hair yesterday, and although he cried a little bit, he didn’t scream, or scratch me, or try his best to get out of the chair. I cut J-Man’s hair yesterday, and I did a little touch-up this morning, and he was great about it. I cut J-Man’s hair yesterday, and ended up with a ball of hair bigger than my FIST, that the birds are now enjoying using in their nest building since I dumped it off the deck.

I cut J-Man’s hair yesterday.

I am MAMA, hear me roar!

We took J-man to the doctor yesterday for a physical. The county requires one as part of the paperwork to get him into the school system setting, versus the Early Intervention setting. The office did very well getting us in on time, but the J-man was NOT HAPPY about being there. He certainly knows that the doctor’s office is rarely a fun place for him.

While we were there, the doctor talked to us a good bit about what we were doing in terms of therapies and the like, and what our plans were for the near future. We told her about the special preschool J-man attends, and his speech, developmental, and occupational therapies. We talked about food, and how what he eats is limited by his sensory issues, and she gave us a few tips about getting some extra calcium into him.

She seemed pleased at the progress he is making, and understanding of how far he has come, although he’s still delayed in most areas. J-man wandered around during that portion, so she got to see him not freaking out… and called him adorable. (Of course she did. He IS adorable.)

Then she said, “It’s so great that you are doing this now when he’s
so young. The earlier the therapies start, the better the outcome usually is. You guys are doing a great job.”

It was nice to hear that. It’s especially nice because I never feel like I’m doing enough, but I also have to have a life too, so I’m constantly pulled in two ways. (Or seven…)

When we were finished, and J-man was all dressed again, she asked him if he was ready to go and get in the car. He looked up at her and raised his arms, and said, “GO CAH!”

Go man go!

Lately J-Man has been trying to stick small objects, particularly little bits of food, into his ears or up his nose. Normally this involves small bits or crumbs of chicken nuggets or toast. I don’t think he’s ever tried to stick anything sharp up there.

Let me just say that pulling a little fragment of chicken nugget out of your kid’s nostril is an experience better left unshared.

Anybody see this in their kid? This came out of nowhere and has stumped us. He doesn’t seem to have an ear problems and he doesn’t otherwise pick at his ears.

Anyone have any insight into this?

Ow. Ow. Ow. Ow.

The preceding words whimpered forth from my ears after the haircut from hell today. We tried doing the right things – took J-man in at a time when he’s not too tired, but awake enough that he’s not grumpy, so not too early but not too late. We did brushing and joint compressions. We did big squeezes. We had balloons and bubbles. We brought along the Leah’s Farm Signing Time DVD.

I still ended up essentially holding the J-man down while Tim held his hands, and the AWESOME woman at JJ’s Kids Cuts snipped quickly. He screamed and cried and fought pretty much through the whole thing. Maybe next time we will just go for the clippers, because at least then she can just zip around his head, and it won’t matter where she hits as long as it all gets cut eventually.

The experience wasn’t pretty. The haircut looks good though.

Also not pretty? Trying to get clumps of wet hair out of your cleavage in public.

For some additional background on Mary’s above post, over the 2 1/2 years of J-Man’s life, the person in our family who has had the fewest haircuts - by far - is Mary. Until I started getting buzz cuts every two weeks, it was a pretty even race between J-Man and me. By our count, he’s had 14 haircuts in 30 months, with his first at 4 months. His hair grows like absolute mad.

About four weeks after it’s cut, it looks like a mop. We limp along as long as we can after that until we absolutely have to go. If it starts getting down in his eyes and ears, it drives him crazy. We can’t win either way.

We’ve been going to a place that specializes in kids’ haircuts. At first, the haircuts weren’t so tough to deal with. We’d just pop in a Dora video and we’d be OK enough to get through it.

About the time of the free haircut (get 10, get one free), things went all to hell.

If you have a sensory-sensitive kid, there’s a good chance you feel our pain and know exactly what we’re talking about.

It literally takes both of us pretty much sitting on him to get through it. If his hair wasn’t halfway to Cousin Itt status, we wouldn’t go through this. It’s pure torture on everybody. He screams the whole time like we’re killing him. He’s so unbelievably strong that it’s nearly impossible for us to hold him.

As awful as it was last time, this one was ten times worse. We used every sensory tool in our arsenal. If you’re a parent of a sensory kid, you probably know about these already. If not, we’ll go over them in a later post. We did brushing beforehand, followed by joint compressions. We stayed outside (which he loves) and walked around in the nice, spring air. We gave him lots of hugs and sang to him. I pressed him over my head a bunch of times because he loves that exaggerated motion. We even brought his favorite video to watch during the haircut.

It worked until she got his hair damp (which came at approximately 28.4 seconds).

We became the parents we always talked bad about, the ones who have to sit on their kid to get his haircut while he screams bloody murder - the parents who have no apparent control over their child. The kids there who were undecided on the whole haircutting issue did not find WildMan’s testimonial all that reassuring.

It simply was a total disaster. Getting his shots was way easier. It ranked right up there with when we all had to hold him down to get an IV in him when he had the norovirus last year. It was that bad.

Afterwards, we went to the local frozen custard joint for some self-medication therapy. Of course, J-Man doesn’t eat that kind of stuff, so it was a parents-only self-pity fest. I got a chocolate shake the size of my head. That would become my lunch. Mary got some chocolate/bing cherry concoction. I gave serious thought to stopping on the way home and seeing how well Kahlua goes with frozen custard. A whisky float - hold the ice cream - crossed my mind, too.

If there’s one good thing to say about it, it’s that the person who cuts his hair each time has limitless patience and is an expert at cutting hair on a moving head on a body that grows fifty extra arms in order to fight with her. It’s got to be like cutting Linda Blair’s hair in The Exorcist.

Well, at least his hair looks nice, which is an amazing feat.

New word of the day - ‘two-berty’, the two-year-old equivalent of puberty marked by tantrums, stubbornness, and parental drinking. (see also Twos, Terrible)

We’ve gotten lucky so far. J-Man’s tantrums generally have been short-lived. Give him a minute and he’s fine. I think those days are coming to an abrupt end.

I dropped him off a while ago at ‘inclusive preschool’, a.k.a. Group Therapy with Paint, The Place Where Therapists Try to Get the Kids to Not Notice They are Therapists by Disguising Themselves as Teachers, and (most importantly) The First Church of ‘Yes, We Can’ Even If It Takes Us a While. He threw a fit something awful. My caffeine-to-parental-guilt ratio was a bit skewed this morning, so I think that leveled it out. Um, thanks.

Next week, the school transitions to a new building with more space and a playground. Hopefully that will help. Lots of people in a close space tend to unnerve him. Still, the transition may take us a week or two, especially since his occupational therapy and developmental therapy are changing days and we’re getting a new OT because of the new preschool schedule and the previous OT going on maternity leave. Should be a fun week next week.

Well, Daddy quiet time at the library is nearly over. Off to pick him up and see how well he did today.

We went to our friends’ little boy’s first birthday party today. Of course, it was scheduled for almost exactly when we try to the J-man down for his nap (not that he sleeps every day, but we try!). He had a good time running around their open floor plan house, although in the beginning, he felt it necessary to drag me along too.

There were probably 10 other kids there. I would say maybe 2 of them were near J-man’s age. They talked, maybe not clearly, but with actual words. They ate real food. They played with the toys provided, and even to a certain extent with the other kids.

My kid? He walked around and around, and played with the front door and the chair-rail on the wall. Other than that, one of us was holding him. I don’t believe there was any voluntary interaction on his part. Yes, if someone were in J-man’s way on his trips around the downstairs, he would push them out of the way. There was a playroom set up – J-man refused to go in there (although it WAS pretty loud). He ate – nothing. He drank – nothing.

When J-man was 22 ½ months old, he finally started to walk by himself. There wasn’t a physical reason he couldn’t do it before then; he’d been cruising since he was 1. We had to teach him how to fall safely, because it didn’t occur to him to put out his arms to block his fall, and he ended up face-planting the two times he tried letting go. Finally, one evening he just started walking. None of that “take 2 wobbly steps and sit down” stuff for him. The next day, he started running. It was like he had to make the decision to Just Do It.

Sometimes I want to say, “Just talk already! Just eat already!”