Tristan started at the center-based Shining Stars program on Wednesday. He’s in a class with four other children with varying levels of ability. He’s the only one in the class under age 2, and I think each of the kids is of a different general ethnicity.

Now, Tristan is kind of quick to adapt after a good day of confusion about the routine. We’ll see if this happens tomorrow! I hear that kids do have a hard time at first. After all, we’re not really a family that spends time away from our child. I expect that he’s getting used to strangers who are women (one or two men, but even the doctors were mostly women) and he’s used to strangers who are children. The point of hemming and hawing here is that Tristan was extremely fussy and could be heard crying for a good portion of our observation. But he woke up at about 7:45am yesterday, and that’s nastily early even for him. He was also fussy through his therapy session at home, and he’s usually fairly cheerful for them unless he forgot to eat. I don’t remember any extreme fuss after his nap, so I suppose he caught up on his sleep.

The “curriculum” includes free play, a circle (kids in little chairs, “friend” attending to each child – 1:1 ratio, how’s that for preschool? ) with singing, snuggle, greeting, and introductions for each child), some stuff in between that we did not see because we went out to lunch! Alone together! For the first time ever without having to beg someone to fly out here to watch out kid or arrange emergency care! *catches breath* When we got there at 20 minutes until the end of the hour, the .. OT supervisor? came out and asked us to please go away (she was more tactful ) so that Tristan did not see us and think it was time to go. I suppose I should interject that the classroom observation is possible through one-way glass, so we were standing in the hallway watching and listening; the kids were outside in the play area when we arrived and there’s no sneaking past them. We killed a few minutes in the heat, trapped in a downtown parking lot (walking past the play area again; it’s in the front yard), and then sneaked inside the building when we heard no more little giggles from the play area. We got there in time to see.. more sitting in chairs and singing to de-greet each child! Tristan had two tambourines or similar in his hands; none of the other kids had any. Curious. Tristan was also having a bit of trouble remaining sitting in his chair, by which I mean he kept needing to be planted back into it.

It will be a busy day today followed by another class. I will very slowly keep updating.

On Monday, we started Tristan’s evaluation/ABA sessions. On Thursday (right now), I finally managed to get around to writing. So far I’ve spent five minutes writing and erasing everything. Not a good start so far!

Anyway, they are going fine. We’ve met all five of the therapists.

I have to interrupt this to mention that I can’t look at the word “therapist” without giggling.

Five ladies, all seeming to be in the mid 20s-early 30s age range. All of them seem nice and all of them are positive and caring with Tristan. Of course, since ABA relies on positive reinforcement, I’m glad to see positivity! A big bin of toys and materials for observation, play, testing, teaching is present in Tristan’s room, which has been designated as the therapy area since it’s about the only place he can be corralled.

I feel very bad for Tristan being stuck in this little bedroom of his for three hours a day of his awake time. He’s taking it well, though. I think. He’s been a bit tantrummy but also a bit sick – that level of having a cold that is just short of calling off work/school. Like many males (sexism!), Tristan likes his snuggles and not a whole lot of conflict when he’s not feeling well.

Tristan’s teachers/therapists come in very quickly, in rapid succession, one relieving the other in many cases. Food has to be sneaked in, because there’s actually no time for him to eat in many cases. He’s not supposed to be idly munching during the sessions – that’s a bit distracting. He hasn’t been taught to eat his meals quickly or with purpose and he might need to learn that out of necessity.

I sat in on the first two days of sessions and James sat in on the first session. The time went very quickly for me; I was watching someone else play in a directed manner with my baby. This is what I’ve wanted for so long – someone ELSE to focus on him, engage him. I’m one of those freaks who likes to see my baby bond with other people so long as he doesn’t decide to replace me or something, so I really enjoyed it when Tristan finally became comfortable enough with his new friends to let me leave the room without screaming. In general, we can sit in on/watch/even record with permission these sessions but it defeats the point if we participate more than requested to, so by Wednesday we were out of Tristan’s “work” area. Actually, we had a meeting with the supervisor of the program on Wednesday so the first day of our nonparticipation was required.

I had something rare happen yesterday during Tristan’s second session – I got housework done! Of course, he came bursting out of his room hungry while I was in the middle of said housework, making me go from idly cleaning stuff up to having to collect a few things frantically.

Tristan himself has been making progress. Since Monday, he has:
* shown that he can make the sign for the word “more” at least with regard to being tickled
* learned to roll toy cars back and forth
* been making more attempts to communicate his choices for desired foods
* been impressing everyone with how much eye contact he does make and how much of a cute little baby ninja he is
* not taking his damn naps! more on that later

(there’s one more thing I’m forgetting, but that is the liability of not writing immediately!)

We went out to Thamien Park yesterday afternoon at around 2:30pm – we’re getting to the point where I slip in park trips that technically cut into his nap time. The park was fairly dead since most normal babies are asleep at that time or something. One other family was there – two little boys, older one was 3 and younger one was 2. The 3 year old wandered around chasing Tristan and being chased by him – they both loved it! It was so sad when the grandma of the 3 year old called him off, but I went to make friends with them later. Turns out that the 2 year old, who spent some time next to Tristan in the swings, is also autistic. I learned this after I complimented the kids’ mom (pushing the 2 year old while 3 year old was off with grandma) because the 3 year old was so good with Tristan. Turns out he has had practice! The family had to leave around then, but I gave them contact information and hope to run into them again.

So.. naps. We’ve been having all of this nap trouble lately. We’ve been racking our brains to figure out What. The. Fuck,. Child? So far, we’ve come up with:
* he probably wakes up because his stomach hurts – when he farts he tends to calm down
* he may just be waking up from an excess of environmental noise
* he may also be waking up screaming because he needs less sleep, though he tends to wake up happy when he’s had enough sleep
* teething again? There are still a set of molars to go and we don’t even HAVE any Tylenol until they figure out that clusterfuck with the recalls

I should note that for the most part, he sleeps through the NIGHT with minimal interruptions. There are times when he wakes up screaming, but he can be calmed down quickly or will actually calm himself down quickly still. He does not calm himself down from the naptime screaming anymore. I don’t know if that’s because he’s in pain or because we taught him that screaming during your nap gets you comfort. He seems to be in true pain of some sort during the naptime awakenings until he lets out a huge fart and then relaxes enough to be held. He actually will push my hands off of him while he’s having the episode, and he wants to be touched any and every other time, ESPECIALLY when he’s just fussy.

We’ve been trying various things, such as:
* putting him down later/earlier for bedtime
* putting him down later for naptime – earlier is no longer an option as his schedule extends until 3
* making extra special sure he’s fed/beveraged enough to last through a nap
* attending to him quickly before he’s exceptionally worked up
* giving him time to settle back down before going to him
* giving appropriate medications to known situations: Tylenol (before recall), Mylicon, and now our new favorite, Benadryl —

WE ARE LUCKY! Our kid does NOT go all hyper and unable to sleep on Benadryl! We started giving it Monday night to help him with the symptoms of this cold. We figured that 20 months isn’t so far off from 24 and we know the proper dosages. Anyway, I believe we have Liquid Airplane Insurance on hand should that ever become an issue. We should discuss whether we should try a dosage prior to his nap today and see if he sleeps through it.

But he won’t go back to the nap after being soothed through these episodes anymore for me as of this week. He’s taking 1.5 hour naps instead of the solid 3 hours he used to take. I also think part of this is that he will need substitution for the exercise he’s missing while indoors for his sessions. I’m sure 20 months is also in the midst of a predictable sleep regression according to the toddler literature, so none of this should even be surprising to us.

Anyway, therapy is going well/fine/good/great etc. and his midday sleep could use some improvement.. in case you didn’t much get through all of that.

We have made official contact with Stepping Stones and we have a schedule.

The first month is the assessment month. This is where people actually spend a month worth of work hours doing something with our child. This ‘something’ is generally ABA (Applied Behavior Analysis) related, and for the first month others will be figuring out what Tristan needs in the way of ABA. We will find out if it means what we think it does, because everything is very “new job-esque” right now and I feel like I don’t know shit. Anyway, people shall come into our home and get to know Tristan and hopefully not be scary.

People? Five therapists and and a supervisor are listed on the schedule as putting in some 17.5 hours per business week. Most of those hours are in our home. We will also have to attend meetings, whereby I have no idea what we will do with Tristan if there’s not some sort of kid accomodation.

All righty. So, our days of therapy shall be sort of like this for the next month (until 6/4), with a holiday in there somewhere:

Monday: 10:15-1:30
Tuesday: 12-3
Wednesday: 9:30-1:45
Thursday: 12-3
Friday: 9:30-12:30

There seem to be minor variations per week, as well. I don’t feel like figuring them out now, as they’re all the same idea with maybe 15-30 minutes of difference.

Anyway, it’s been arranged for Tristan to keep going to playgroup, but he’s not going to have a lot of time to himself anymore. I hope for his sake that he doesn’t require intensive therapy to continue at this rate for so long unless either he needs it THAT desperately or he enjoys it. I’m going to start having to make park playdates at very concise times, but that even takes just about every moment that anyone I enjoy seeing is available.

I also don’t know how much of my participation is written into this yet. Of course the PLAN will receive my participation, but I’m not sure which parts of the program are parent- optional, required, or disallowed.

So, I suppose this post is more of “Tristan starts in-home preschool this Monday.”

You know what? I’ve been thinking this and telling people this, but not really taking the time to write it.

I’m fine. Better than fine, even.

I feel uncertain. Life’s about to change soon – we will have strangers up in our stuff very soon. We don’t know how that’s going to interact with everyday stuff such as living life and planning anything non-autism-centric. But I look forward to these changes with optimism. I know my baby and I know what I want to see in him and what I really don’t care about. And I know my baby needs help on a more consistent and focused basis than I know how to give yet. So yeah, a little bit of the “just got a new job that starts in a week” feeling.

But my kid is badass. And autism isn’t something he’ll need to have “cured” or even completely overcome. He needs learning skills, communicating skills, and coping skills. But I couldn’t tell you how many times I’ve come across something mentioned in autism literature that is true about Tristan but that I thought was more of a feature instead of a bug.

Something I came across lately reminds me that “autism” is a rather a non-descript empty black box that is filled with ideas to become a concept. So is anything else, by the way. What this means is that you (our family on behalf of Tristan since Tristan is a baby) fill it with positivity. I’m never going to teach him that he MUST stop “autistic” behaviors in order to make friends unless those behaviors are actually disruptive or counterproductive. I won’t teach him to get angry at people’s stares or take offense at their comments. But I will teach him how to make use of his ninja skills.

I do a lot of thinking about this, mostly because there’s so much overlap between “shit toddlers do” and “shit kids with autism do.” This will likely be very ramblesome and probably repetitive – sorry!

The casual observer can tell that Tristan is very busy and/or high energy. He always has been a bit of both.

When he’s placed down in a closed room, the first thing he does is run and try all of the doors. If any of them open, he may try to run through but he will likely open and close it a few times. When placed anywhere, he gravitates to cabinets, drawers, and doors and will entertain himself by opening and closing them over and over. When he does this, I know I have a good 10 minutes where he’s not going to be getting into any trouble. Any “typical” baby I see past about a year old is curious about the doors for a good minute and happily plays with Tristan for some time but loses interest or is easily dissuaded by a parent. Tristan can be dissuaded from doing it, but he keeps trying over and over again as if someone’s pulling his strings and making him.

When he’s placed near people, he usually wanders toward an area of slightly less human concentration. He doesn’t seem to mind a certain amount of bodies and noise but in a crowded area, he definitely tries to escape – this trumps opportunities to climb, slide, bounce, and many other things he loves to do. Any “typical” baby I see past about a year old does this from time to time if allowed but like the doors, a good refusal by the parent will get their kid onto doing something else. Tristan will actually walk on and on for a mile or so, very rapidly, as if he has a destination or some landmarks in mind.

You can see how he eats the shoulder of his shirt like it’s candy. Most of his photos feature a fairly prominent wet shoulder. He’s now gnawing way past what is likely teething. This is behavior we wrote off as related to teething when it happened when he was teething. We all tease him about it in good humor and allow him to continue doing it. I actually prefer it over a pacifier or other object that is not usually attached to the person. That being said, I wonder if there is paradox if he goes shirtless for long!

He organizes objects, but only in situations he’s been praised for doing it or where we generally encourage it. At this point, it’s “weird” but not problematic. He tosses his blocks into the proper bin, but his dad made a huge game of that one night. He lines up bottles in the shower but I taught him to do that instead of taking them and throwing them all onto the floor.

He talks. He sounds a lot more like an infant than a toddler, though. He babbles, he seems to make up words, and he halfheartedly says words we know he knows. His speech is sort of like his high-five: he does both sometimes but sort of loses interest and starts doing it halfheartedly after about two tries. Sometimes he says “hi” on command and when he thinks he should, but it sounds like “ahhhhhh” even STILL. When he was very little and started saying it, it sounded just like it does now.

He makes eye contact and he smiles. He’s noticeably giddy when engaged. He shares back and forth interactions. He snuggles all of us, pets included.

I can see why it’s really difficult to diagnose this sort of thing in a child so young. He really just looks like a very intense toddler when out in public. Kids his age aren’t chatting about the weather or really even doing much more than quickly glancing at each other unless coached to do so. Kids his age open and close doors, and they wander off, and they want to be in the swing for hours on end, and they don’t always talk well if at all yet. Communication is subtle unless the parent is deliberately ignoring the child.

So, basically the details Kirin gave were sparse, in part, because the details are sparse at this point.

Basically, Early Start contracts out the therapy / treatment / whathaveyou to a company called Stepping Stones (presumably this one). They’re supposed to get in touch with us by the end of the month to set things up for the month of May. So far we like what we see from the website, assuming it’s the right one

Anyhow, for the month of May, they’re contracted for 15 hours a week of time with Tristan (here in our own home) – they’ll be bringing in various folks to our home to come work with Tristan and figure out what the most appropriate strategy is for now. 15 hours seems simultaneously like a lot, and like nothing – some of the therapies you read about can actually range from 20-40 hours a week, by themselves – but even 3 hours a (week) day seems like a significant portion of his day.

Additionally, they’re allowed to give us (as in the parents) 11 hours of education of some form (hopefully some general, but hopefully some related to getting us up to speed with whatever they’re going to be using to work with Tristan.) Not quite sure how that will play out, but we’ll find out soon enough.

At the end of May, they’ll make their proposals on what they think will work best for him, and we’ll meet with the coordinator from Early Start and the folks who will have been working with Tristan to finalize the tentative plan for the next six months as far as what therapies and how much of them there will be – it’s sort of hard to determine what that will entail, as a large part of it will be based on what happens in the month of therapy.

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Tristan’s doing more neat (but fairly classic autistic-y) things, as well. Yesterday and today, we found that he’d fairly reliably echo “ha-ha-ha” said in descending tones (which, given that he rarely is interested in replicating sounds seems like somewhat a good thing). He’s also started grabbing my hand to indicate that he needs help with something (notably: playdoh) as well. He’ll also pretty reliably happy when I get home from work – I came in and laid on the ground near him, and he came over to give me a hug. Then again, when we let Samurai in, he did pretty much the same thing to him

This morning’s big event was the last portion of the autism evaluation – the physical exam. Same time – dick o’ clock in the morning (for most of you, that refers to “6am” and for us that refers to “8am”) we had to get up and going for our appointment on Friday.

I have to interrupt this to mention that yet again, Tristan’s screaming when he should be sleeping. I think he can hear the clicking of the keyboard.. even though I’m ACROSS the house.. be back in a few moments to write.

Anyway, he’s settled down now. Appointment today. Mostly questions about his medical history (not much, as it turns out – he’s been lucky and healthy – and also, he’s a baby..) and questions about his body in general as well as a physical examination. She examined his poop and manipulated his limbs.. well, not in the same moment. But the doctor was checking for related genetic conditions, of which she did not see any overt signs. He’ll have to have his blood drawn for some lab work, where they will test again for lead and also determine if he has any chromosomal clusterfucks. We’re now old champs at the Kaiser ASD clinic.

We got back from the opposite side of the city in time to attend playgroup today. We’ve still been going every Tuesday and Thursday when we can help it; it’s been something I forced myself to do first when Tristan was around 6 months old and again when we were invited to be sustained guests of the playgroup after we moved into here. Anyway, there was a large turnout due to the chilly, windy rain that felt like coming out. We saw some of the friends we don’t see often such as Mani & Arnav and Eileen & Elizabeth – friendly moms with kids within a month of Tristan’s age. I adore the playgroup, even when turnout is fairly low, because there is usually something that Tristan will focus on and leave me without having to attend to him every twelve seconds to make sure he’s still visible. I also will note that I started attending the playgroup to force Tristan to be around other children, and so far he still does just fine in that department. He’s a little bit more independent and explorety, but he does get right in there and play with what others are playing with, and he’s becoming more polite about it.

We had an impromptu playdate over at Eileen and Elizabeth’s place. We were all busy enough that it was 2pm before we knew it. The amazing and happy part of this is that Elizabeth is very “present” and was able to engage Tristan – the two of them spun around together and giggled, and Tristan made eye contact with her all familiar-person-like! I really hope that this will help him keep up with kids his age in terms of him perhaps starting to interact with children more. Elizabeth is a cutie and VERY opinionated, and I can actually manage her with Tristan fairly easily assuming Tristan’s not wandering off somewhere at ninja rocket speed.

This was a very good day, despite crazy indoors-only weather.

We have here the report from Early Start, who we met with on Tuesday, April 13.. these are the people who are going to provide services to help Tristan learn how to get along in our world. The password is the name of our orange kitty. If you are curious to read this but don’t know the password, just ask one of us.

Our pediatrician referred us to Dr. Cohen, a Developmental Behavioral Specialist who referred us to the ASD clinic. Here’s his report about Tristan:

Password: the name of our black kitty (don’t forget to capitalize the first letter)

Let us know if you need a reminder or are just really curious and wouldn’t know the answer otherwise – we don’t feel that the world at large needs this info, but if we know who you are, we’re likely happy to tell you about things.

Yesterday, we got the rough draft of the report from Early Start (from the Tuesday meeting).   More details will follow, but it roughly followed what we expected – generally good in the motor skills, but not so good in the social and language side.  Worse than anticipated in the language side, actually.

Tristan’s medical assessment also got bumped to today (instead of May 12th) – we got a call asking if we wanted to take the place of a cancelled appointment yesterday afternoon – a little schedule juggling later, we were set for a 9 am today.  We’re not usually all up that early, but we figured saving a month was sort of worth it.

We headed down to Santa Teresa to Kaiser’s ASD assessment and diagnosis clinic to meet with two doctors who would be performing the assessment.    Very similar to the Tuesday setup, we sat at a table with one, answer questions,  while the other went through a battery of tests revolving around playing with various toys, and seeing what he could or could not do.   Given that this was about the 5th time (literally) we had answered roughly the same set of questions, so the question part went by pretty quickly, and the latter half involved us watching them play (or try to play) with Tristan.

They did a few batteries of tests, which were much the same as the ones they did at Early Start – stacking things, pretend play, peekaboo, imitating the play of another, etc.    Tristan seemed a little less cooperative (he’s had a cold for a couple of days, and coupled with the shortened sleep I don’t think he was feeling his best), but pretty much performed the same here as he did at early start.   Strong in motor skills, weak in language/social skills.  More details on that forthcoming.

Ultimately, at the end, they sent us off to get a snack while they conferred, and afterward, the  short answer was that we now have an official diagnosis of “Autistic Disorder” –  which is the technical term for what most people will think of as “Autism” (the other possibilities on the Autistic Spectrum being Asperger’s, which is sort of “Autism spectrum, but with language skills” or PDD-NOS, which is “Autism spectrum, but doesn’t really fit all the criteria for the other diagnoses)  We still have to go back Tuesday for a physical exam, as well, to check on more tangible things related.

More importantly, Wednesday morning we meet with our Case Manager from Early Start to go over the report they sent – after that, I believe we set up one more meeting to actually set up the IFSP (Individual Family Service Plan) – basically “What goals are we working on, and what services we’ll be getting to help work on them” – we already have documented goals (from the draft) but it’s still up in the air as to what services we’ll be getting (might be some form of pre-school, in home training/therapy, parent training, etc.)

The good part, though, is really that we have the diagnosis now, and not at 3 years, or 5, or 7.    Below 3 years, it’s handled by the County Office of Education, and from everything we’re hearing, the services are supposed to be good, and hopefully effective  After 3 years old, the responsibility shifts to the local school district, and everyone says to expect a dip in the quality of service.  Additionally, at that point, the focus shifts solely onto  Tristan – until then, it will be a  combined focus of teaching Tristan, and teaching us how to teach Tristan – generally a comprehensive plan to help him out the best we can.

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On a cheerier note, Tristan really does have a lot of new tricks up his sleeves.  In the past month or so, some of the more interesting things he’s done:

• Learned to bring us his shoes so we’ll put them on him.  Generally as part of trying to get us to go out – although the latter part he doesn’t always follow through on – he’ll try to get us going, but then lose interest half way.
• Learned to put his lego blocks away in their container.
• Figured out how to climb onto our living room table, and as of today managed to climb up into one of our kitchen chairs and sit.  And stay sitting for a while!
• Brought a diaper from his diaper bag, and walked over to the door (when he very much needed a diaper change)
• While playing Peekaboo with the doctor (Melanie) today, repeated “Mellie” when the doc was saying “Where’s Mellie?”

So while it’s true that he may be behind in some areas, he’s certainly learning some new tricks along the way.