Tristan figured out how to sit on a big kid swing and hold onto the chain today. He’s also officially proficient at climbing random playground structures and being trusted not to walk into dangerous situations more and more. I’m actually writing this while still at the park….?

It appears to be Autism Awareness Month again!  It’s been a full year since we first had the A- word thrust into our lives at our son’s 18 month well visit.  Since we were told that we could not be certain of our son’s future – whether he’d be independent or social or capable or existing on the same plane as the rest of us.  Never mind the shit parents tend to wonder about their kids’ futures – whether their child will be pretty or smart or a complete asshole.

Not having an idea formed of what autism was, we suddenly found ourselves faced with the presence of a 1 and a half year old child who was at risk of not developing.  I mean, we weren’t at the doctor’s office because Tristan had troubles – they screened him with routine questions during a well visit.  We were aware that Tristan was different; in fact, we suspected that he was at risk of being different and that is one of the reasons I wanted to document his growth and development before he was even born.

I remember when Tristan was just shy of a year old, I could not teach him basic verbal commands that kids seem interested in learning.  The only thing he would “do on command” was to splash water.  He would not high-five, although he’d been taught to do it a few times.  He would not point, wave, or try to say a word on command.  He didn’t seem to understand English that much.  But we weren’t speaking any other language to him.  He wasn’t against being social and around people unless they tried to feed him.

So: we were told that our son had “autism” of “unknown severity, since he’s so young.”

After his diagnosis, we immediately began Early Intervention services.

It’s been a year since that point.  Tristan is two and a half years old and has had such a head start in life because we have had such focused instruction for him.  He fits very few of the negative stereotypes of autism on a daily basis, and he fits some of the fun ones.  He engages with people and has fun with them, although he is shy and aloof.  He interacts with children his own age and plays meaningfully alongside them and sometimes even with them, taking turns.  He loves to show off how well he can talk and is putting several words together now and even requesting things.  His self-stimulation does not get in the way of purposeful play.  He is very attached to us and to his therapists.  He learns from imitation.  He doesn’t put shit in his mouth that other kids his own age don’t, except for the shoulder of his shirt.  He’s kind of patient for a two year old.  He’s a freaking two year old who can read and count – never mind knowing the precursors like the alphabet and what “10” means.

In other words, we were treated to the glory that is knowing your child with autism has a sharp, present mind and wants to reach out and learn.  Far before most people suspect their child with autism has any problem, agewise.  One year after he received his diagnosis, we have hope and dreams for his future instead of the destruction of same.

Because he has this diagnosis, he will receive help with his weak areas rather than the same middle finger kids like him received in my generation.  Because he has this diagnosis, I received a lot of help with a very active child who wore me to the ground on a daily basis with his constant need for supervision – and now he does NOT need such constant supervision.  Because he has this diagnosis, his educational opportunities will be personalized and broader in scope.

I don’t find that scary at all.  What I do find scary is families who delay or refuse therapies or evaluation because they are in denial somehow.  How is refusing to help your child, for fear of a label, going to give your child the assistance in developing skills to cope with the world?

Oh yeah – the “cure autism” bullshit is about as respectful to people with autism as “cure homosexuality” bullshit is to gay people.  Whether you say “autistic person” or “person with autism” is irrelevant.  Just saying.

We managed to implement the countdown to “you’re in trouble!”  If Tristan’s screaming, we can usually halt him by counting 3, 2, 1.  He will help count instead of screaming and is pleased to do so.  It’s resulted in a lot fewer instances of him needing to be placed in his room for having a tantrum.

Tristan has a push tricycle that we received as a gift from a neighbor who no longer needed it for her child.  We’ve had it for a good year now; I lent it to his preschool while he was there, since he had no inclination to use it.  However, we’d been using it as an impromptu stroller for a couple of months and he’s now able to steer it and almost pedal it on his own.  I’m really proud of the steering – he picked that up rather suddenly last Monday and has been enjoying his newfound skill.

Tristan’s language is gaining some more levelage.  He’s repeating two word combinations and showing he makes sense of the words.  For instance, I can instruct him to say “hi daddy” and he will repeat both words.  I’ve heard him say “wash hands,” “yes please,” “no thank you,” and quite a few other combinations of words.  His pronunciation is improving, with him able to say “triangle” understandably.  He’ll attempt to say most anything I ask him to say.  I am trying to get him to answer offers of food/drink/etc. with a “yes please” or “no thank you” – I will say, “Do you want milk?  Say ‘yes please’ or ‘no thank you.'”  He will repeat the “no thank you” in that case.  If I reverse the prompt and put the yes last, he will repeat “yes please.”  I’d say he understands and means his yes or no about 30% of the time.  From what I’ve seen of other kids around his age, that’s not too unusual.

Tristan is making more sense of verbal instructions and the names of people.  One thing he’s working on in therapy is “give (someone) a hug.”  He’s made clear that he understands the instruction.  We’ve been practicing it with multiple people in the room and without gesturing to indicate who is who.  He has a pretty decent success rate once he figures out everyone involved’s name.  He loves to show off, he loves the hugs all around, and he especially loves when we cheer for him when he gets it right – he echoes or prompts the “Yaaaaay!” and it’s really cute.

We’ve discovered that Tristan is quite a little chocolate demon.  We’re using this our advantage in language training.  He will do his best to try to remember a sentence in order to gain more chocolate.  His pronunciation of the word chocolate sounds more like “cock-cock” but chocolate is a bit of a difficult word – I don’t blame him.  We prompt him to say, “(Mommy/daddy, I want) more chocolate please.”  He will repeat “mommy” or “daddy” easily, he will try to skip over “I want” but can be prompted slowly (though we don’t enforce it always), and the “more chocolate please” part is not optional in order to get his chocolate during language training.  He’ll try to initiate the exchange so far by saying, “Mommy, hair down please.” which is his one now spontaneous but formerly prompted sentence.  At least he gets the point that we want him to use his words to ask for things!

Tristan is rebelling.  He insists on pronouncing the word “soup” like “sowp” instead of “soop.”  If it were spelled “soop” then it would be proper to pronounce it that way, right?  He pronounces “poop” properly.

We have a new obsession – Word World.  If you’re curious what it is, just click the link – the picture you will see explains it far better than I can.  It’s a show targeted toward 5-7 year olds, and I think Tristan knows all of the words used in the show by now.  Anyway, we highly recommend you share the show with your little ones.  As an adult, you will probably be ok with it and not puke too often when your kid asks to watch it over and over.. well, assuming your kid is still fairly young.  Anyway, I’ll certainly take that over the Myriad of Licensed Characters that grace just about everything and make no sense to me.

And Word World has an episode about the “oo” combination, which is probably why Tristan insists on calling it “sowp.”

Tristan’s evolving some neat skills – he’s starting to break down words I don’t think he’s seen before and be able to read them (notably: when it was about bedtime a few days ago I wrote out “sleep” and then “sleepy”, and he said them both – neither of which I know us to have taught him)

He’s also starting to be able to do this in reverse – I asked him to spell baby (while he was playing with Magnetic ABCs on the iPad) and he actually used it to spell it out.  Managed to g et him to spell “Mommy” the next day, as well.  Also very neat.

He’s been using a combination of a stencil + easel and the iXL Cindy sent to practice trying to write letters, as well.  Some he’s much better at than others.  He can write a few of them without assitance, evidently (X, specifically, which is evidently a tricky one).

As far as services go: after fighting with the process for… 4 whole months now, we started receiving speech therapy for Tristan, as of two days ago.   So he’s now receiving 15 hours/month of ABA, 1 hour/week of OT (namely, help teaching him to feed himself) and now 1 hour of speech (general language acquisition).

Additionally, since Tristan has been receiving services for roughly a year, they’ve started his next round of testing – or I should say, mostly finished.  The OT side is possibly going to fade out after the review of the tests – he can now do roughly most everything expected of a kid his age – use a spoon (mostly) without spilling (which was one of his major deficiencies), assist in donning / doffing clothes / shoes, etc.   Additionally, the OT has been working with him, as of this week, on 3 yr+ skills, like cutting.  He actually wasn’t faring too badly there.

We don’t officially have the results of the testing, but from peeking over the shoulder of the person administering it, I may have seen the scores – and for everything but communication/social skills, he was within 25% (AKA: abilities around that of an average 24 month old)  Keep in mind this is impacted by the communication issues – if he doesn’t understand a command, he certainly can’t comply with it. Ultimately, it’s a language thing he was still around 33% behind there – not great, but far better than the 50% behind.  In the end, this round of testing seems to much better represent his actual abilities (though it’s not perfect, obviously).

He’ll actually wind up going through yet another round of testing in April, through the local school district (which Kirin posted about earlier).  Basically, at age 3, it all switches over from one government agency to the local school district.  We’ve heard conflicting information about what it takes to qualify at service from that point, ranging from things that he certainly wouldn’t qualify for, to the more logical determinator: “would he be able to function in a normal classroom without assistance?” – so we’ll see.

Also: completely random – Tristan has started to try to perform a front roll without assistance – something that some of the Little Gym can do – presumably he’s learning from them.

Tristan is officially able to eat chicken soup by himself.  It’s been a couple of weeks, and the video is up of him doing it.  He’s good enough at doing it that we still let him eat it while on the couch.  All he had to do was quit turning his spoon upside down.  To that end, we’ve had an occupational therapist coming once per week, and although she hasn’t been coming for long or even had too much interaction with Tristan, working with her has solved Tristan’s main problem.

He’s also become the hair police.  Now, with much regret, I admit that I have butchered my hair a bit.  I blame the home chemical-based dye jobs – they break my hair and then I have to cut all of the nice length off, so one of these years I will learn.  Anyway, one of the sentences that we taught Tristan to use was “Mommy, hair down please.”  And now, any time I dare to put my already too-short hair up in a scrunchie, Tristan busts out the full sentence.  How can I refuse that request?  Punkass kid makes me take the hair down in the bathtub, too, when I really don’t want to get it wet.  But that makes two distinct things he asks for verbally – my hair to be down, and his iPad aka “apple” or “p-apple.”

He’s now in the stage where he makes a strong effort to repeat words that he hears and to show off that he knows what things are called.  This was adorable when he noticed a duck-shaped sponge and said “duck” and when he picked up a toy frog and exclaimed “FROG!”  It was hilarious this morning when I was explaining to him that he was eating Peanut Butter Crunch cereal, and since he knows the word “penis” better than “peanut,” that’s what came out.  (He did not try to say “butter” or “crunch” – I don’t think I’d have been able to stop hysterical laughter if he’d actually said “penis butter.”)  I love that he’s talking and making sense of the language.  I realize that when he gets good at it, I will start to wish he’d stop talking from time to time.

I’m also really proud of how cooperative Tristan has gotten with regard to staying within physical boundaries.  By that, I mean that if we’re at a park or in a play area, I expect him to stay within the boundaries, and I don’t have to go chase him to retrieve him very often these days.  He’s also getting better at staying with me and not taking off immediately to explore the very second he has physical freedom.  We’ve been using a push tricycle to get around lately, and Tristan will mount the tricycle when I ask him to – and then he stays put and participates in the ride!  It’s SUCH a weight off my shoulders when I can count on Tristan not to disappear or instantly put his life in peril.

And he’s starting to get better at following verbal instructions without gestures!  Obviously not perfect, but he understands us a lot now.

We might live in the wrong area for Tristan to have access to good services once he’s 3.  However, that’s mostly a good thing; what we’re being told is that the district we live in does not have adequate services for high-functioning children with autism.

It’s kind of difficult to tell what to expect when your tiny (relatively) little toddler is diagnosed with autism.  First of all, professionals and friends all disagree on what they think autism is.  Second of all, the criteria for diagnosis have broadened.  Third of all, the age at which the telltale signs of autism are observable has gotten significantly earlier.  Fourth of all, the M-CHAT screening questionnaire is being administered at 18 month well visits and leading to detection of autism in children who did not otherwise seem at risk.  Fifth of all, we don’t have any other children and we didn’t know many other children early in Tristan’s life.

In other words, there is not a shitload of precedent for where we are.  And so a proclamation that our very intelligent and affectionate (and VERBAL) child with autism is “doin’ real well” is not something we were able to take for granted.  We suspected that he was “doin’ just fine” and able to handle most of life without special supports not given to typical kids.  But we don’t really know.  We have to take the word of professionals working with Tristan who perform assessments and scrutinize the data to tell us just where he is on that yardstick of handicap level.

So, when we bought our home, we used the school district as a heavy criterion.  We’re terribly classist (though I’d call it “gangist”); we know that property crime is lower in regions where school districts are rated higher.  We found that our current school district is one of the better ones.  But we may need to reevaluate our choice of location, depending on what we find out in the next few months.  I’m sure it will be no hurry, but it will be quite a quest if we decide to go down that road.

The good news has been very good, though.  His mind is definitely present.  He is definitely curious, aware, and really freaking smart.

Tristan sort of threw himself down our small set of stairs and tumbled a bit.  I exclaimed, “Ouch, fuck!” and Tristan repeated it crystal clear.  I just mused, “Pretty much!” and that was that.  He did not repeat the word “fuck” and that’s the only time I’m certain he said that specific word.  To be fair, falling down stairs warrants that word if anything does.  But there we have it – he’s no longer a curse word virgin, but he doesn’t repeat things further that we don’t react to.  Since anyone who knows us personally is quite familiar with our stance on curse words, I just wanted to reassure you that so far everything’s ok and he’s not becoming obsessed with my potty mouth, even though he’s repeating a lot of what he hears.

Tristan learned to pronounce the word “one” properly about two days ago.  Will he manage three or seven next?  It’s amazing how he’s improved his pronunciation of much lately, replacing approximations with way closer representations and being able to master three syllable words.

Some neat and/or cute things Tristan is doing lately: saying “p-apple” for pineapple, taking an interest in the word “people” and what people actually ARE, showing he actually understands phonics for real, and taking on counting all ninjalike. Oh, and when he tries to initiate conversation or complain, he says “A B C D!”

Tristan’s been using the Lakeshore fruit cutting kit in therapy sessions and is able to say the names of most of the fruits and vegetables in the kit. I love it that he tries very hard to say them, especially since he’s randomly balky about talking with me and/or in general. He’s really cute when he says “peeeeeeeeeeeee-APPLE!” and he persists because he knows we think it’s cute (he’s tried to say it correctly, but then jubilantly says it his way and we all smile..). Maybe we will have a produce lesson when he’s slightly older, with samples to chomp on if he becomes curious.

He learned the word “people” and thusfar recognizes at least stick figures (drawn by me, because I cannot draw friggin’ people), male/female restroom glyph style icons (in an iPad app called Magnetic Alphabet), and Little People figurines as being “people.” For the first time, he was interested in playing with the massive collection of Little People toys that I’ve been amassing for him since his first birthday. He did not remove the people from the vehicles immediately, although he did throw them all one by one (thankfully just from his chest to the floor) for a few minutes. We lined them up and counted them – it turns out that we have sixteen figurines currently present. Some of them are cats and puppies, too, and we identified those. However, cats and puppies still count as people.. at least he might grow up with a kind attitude toward animals.

Tristan has been randomly reciting the alphabet in phonetic form: aaah, buh, cuh, duh, eh, et cetera. He started that about two days ago. I knew he was getting good with the phonics, but that’s the first real proof that he has that shit memorized.

So that makes:
– visual recognition of upper and lowercase letters
– fairly to very clear verbal identification of all of them although he balks at W and is still sloppy on G and J
– memorization of the sequence of letters
– memorization of at least the most common phonetics for each letter
– not too shabby at singing the alphabet song, although his tune is more competent than his enunciation of letters while singing
– shows a far better understanding of spoken words when paired with written representation, and remembers the written representation if he learns the word

Oh, he’s kind of bored with letters. Numbers are actually what he spends his time on lately. He indicates that there are “extra” people by counting them. He counts things often and randomly. He’s shown that he can count properly to 12 in his therapy sessions (with one-to-one correspondence, or one number per object and not getting messed up along the line and counting too fast/slow). He recognizes numbers.. wow, I’m not even sure to what extent. We’re used to him identifying 20 and below verbally. I wrote out the numbers from 1 to 90 on a big sheet of paper (would’ve gone to 100, but I ran out of room) and showed him how counting by 10s works to determine what comes next in the sequence (40 after 39, for instance – 30 and 40 are lined up on the paper, so it makes logical sense to Tristan). He’s been enunciating his numbers more recognizably – I think the current sounds are “uh, two, eee, fuh, five, six, seh, eight, nah, ten, ev-en, telve, tir-TEEN, fuhteen, fifteen, sixteen, seh-teen, eighteen, nah-teen, tunty.” Anyway, I wrote out the words for some of the numbers separately from the giant table o’ numbers, in this format:
9 nine
19 nineteen
90 ninety
and he made the distinction in pronunciation. I’m not sure he’s memorized them yet, but he certainly made sense out of the process. It’s easy to tell because he will not try to talk if he does not, and he most definitely talks about his numbers. It makes me melt to hear my little baby say the number 90 in his little toddler voice.

What a wonderful update! Which is good because other than these neat achievements, his behavior has made him quite the pain in the ass lately. Right now, in fact, it’s 5am and I believe James is in Tristan’s room calming him down because he woke up screaming *again*. Tristan’s been really clinging to me and overstimulated to the point of obnoxiousness by my presence. He’s been reluctant to entertain himself or spend much time hanging out in his own room with plenty of toys. He’s been reluctant to spend time across the living room from me, watching videos tailored to his interest and snacking on spicy chips. I must change my tune on two year olds: they ARE easier, but they’re giant pains in the ass. They become little teenagers, in essence.