IEP Time.

I'm not sure I have it in me to get into details right now, but we had Jake's IEP meeting yesterday. It went really well, overall. We discussed the results of the PEP-3 that his special educator did with him, and that was very enlightening. He needs a ton of work on fine motor and gross motor - yet he is the most balanced, coordinated kid you've ever seen if you just watch him move on his own. It's the motor planning part that I think is - well, broken. I do feel that the intensity of his need in this area speaks to possible neurological damage. My own gut feeling is this happened when he was malnourished before his cystic fibrosis diagnosis.

The good news is that he is only mildly affected socially and emotionally. I think that is pretty cool. He is a very social kid, given how significantly his autism affects him. All that DIR and floortime and RDI and having AP parents who are in touch with their emotions and such - well, I'll take credit for it, okay?

But I have to give huge props to the school team. When we reflected yesterday, on where he was a year ago, it's just phenomenal. The difference is night and day. He's doing just amazingly well, and the program is simply awesome. I don't even really have enough superlatives to throw at it. He's in an intensive environment, a well-designed, well-executed one, for 3 solid hours a day, and it's having a huge effect on his progress.

So, we're hitting fine and gross motor goals hard on this IEP. And language. That's my goal, anyway. Yes, we need to continue to move him along socially - absolutely. But I would like to really see emphasis on ameliorating the motor planning issue. I think that motor planning difficulties are part of his language issues as well - and why scripting works well for him.

Another little proud mommy note. He is just such a love, and kids and adults alike are completely head-over-heels for him. He brings joy and smiles to everyone he meets. I just think that's so cool. He's a very special kid.

And on the being a love note, we have a complete goofy love of a labradoodle. He's somehow out of the mouthing phase (I know, I know, he is only five months old) and just settling in as a lazy, labby, snuggling loaf of a pup. We need to exercise him more or something! But he's calmed down so much, and he and Jake have developed a method of playing together that is pretty neat. Jake has figured out how to hold the top of his muzzle so he can't mouth him, and that's opened up a world of play because Jake no longer feels threatened by the possibility of mouthing. Burke sometimes whines and cries about his snout being held, but stays to engage Jake more, so it's all puppy drama. They will wrestle and play on the king-sized bed for many minutes at a time! All I can hear is Jake giggling and laughing...it's great.

November Nuttiness.

I'm struggling to stay afloat this month. We had the swine flu, mostly recovered, but now have a cold that is hitting us all (except Katie) a good bit harder than usual. Jake had his quarterly cystic fibrosis checkup yesterday, and he did fairly well, but they're concerned about his weight, so we have to feed him up and go back in two months. He was up to 67 pounds when school started, but lost a couple just from not having free range access to food all day long in a more unstructured environment. While he has access to food always at school, he's often so busy that I don't think he eats unless it is at snack or lunch. So he had been down to 65, which they would have been happy with, but the swine flu knocked off a couple more, and he looks thin and they want him fattened up. So, more cases of Reeses Peanut Butter Cups to buy, more ice cream, heavy Jersey cream for his oatmeal in the mornings.

Burke is doing amazing, and we tried our first venture into a Staples yesterday with the harness and two leads - one for Jake and one for me. Well, hm. Didn't go so well. Within a few feet, Burke was so excited he was standing on his hind legs! Silly poodlehead. He is such a prancer that way. I got really embarrassed and shuffled him to the car, although the woman at the checkout was very supportive and I think I could definitely have just worked through it with him. I think he was mostly blown away by the hugeness of the space, and overexcited since he had spent the previous several hours in the car waiting for us.

That's been my main obstacle with public access training: he goes with us somewhere, then is hyped up by the long car ride or having to wait while we do something else first. It is also more work than I thought to manage both the dog and Jake, although I got really excited about the prospect of Jake holding Burke's leash while I hold the other one - it felt more "normal" for Jake in a way, than me holding his hand when he's nine years old (and if I don't hold his hand, he runs up and down the aisles). I could see Jake being regulated in a way, by the presence of the dog and holding his leash. So that was pretty cool despite Burke's antics.

It just seems that practicing in public areas is going to take a lot of time and patience. We'll get there. We also need to work more on leash, and I think I said that before. I'm sort of daunted by how much time and energy it all takes. Maybe I've bitten off too much, and need to relegate Burke to companion dog status and consider a trained service dog. I don't know. Right now, today, I'm tired and sick, and it feels like an unachievable goal. Then again, he's a five-month-old puppy.

We have found that he's terrified - I do mean terrified - of bubbles, and it's rather hysterical. It started when the kids got a couple of little containers of bubbles for Halloween. As soon as Katie blew them, his eyes went wide and he ran upstairs and hid behind Jake's bed. Now all you have to do is say the word "bubbles" and his eyes get all wide and scared. Then we hadn't blown them in a few days, so the word "bubbles" wasn't having much effect. I'd grab the bottle and - yep that did it. Upstairs he goes.

I'm trying not to overuse it or terrify him, but I've tried to desensitize him and that hasn't worked. We had a sudsy sink full of dishes and Katie took some of the suds on her finger and put it near his face - that terrified him too! It's kind of funny to have this seemingly unflappable dog who has this unexplainable fear.

Back to Jake, his newest obsession is numbers. Counting, or just saying "seventeen," which is his favorite (eighteen follows close behind!). I found a talking calculator that I had gotten from Southpaw this summer, and forgotten to give him for his birthday. He loves it! He has been pressing numbers then the "repeat" button which will read them to you as numbers versus digits (so if you punch in 123 it will say "one hundred twenty-three," although you can have it read "one two three" also if you prefer).

He's been doing really well overall, and his relationship with Burke is developing nicely, too. He loves to play with him, and when they were in the car yesterday he was tickling his chin and petting him. I think he likes that in the car, Burke can't get mouthy. I think he will like Burke even more when he no longer mouths at all. Soon. Right?

Halloween antics.

Jake recovered from H1N1 very quickly, and was back on his feet by Thursday last week. Friday and Saturday were exhausting days for him, though, so yesterday we completely laid low.

There were many festivities at school on Friday, then a dance at the elementary school in the evening. Jake tripped out on the lights, wore his costume most of the time, and although he didn't interact with the other kids he was happily in parallel play mode throughout most of the hour and a half we were there.

On Saturday we headed down to Montpelier to our friends' house and went trick-or-treating in the big city. He had a lot of fun, and was very motivated to go up to each house himself and hold out his bag or choose his candy. I don't think he said much, but it didn't matter. The atmosphere was less formal than Hardwick, where it is very much expected that you say "trick or treat" and "thank you" or else you don't get any candy. I mean, most of the folks don't understand why a kid wouldn't say those things, so it gets awkward and we have to go up to each house with him and prompt him through every interaction. This felt nice, just to hang back like a "normal" parent and let him do his thing.

Training Burke has been going exceptionally well now that I've fallen back on a few "old school" methods and actually am not afraid to school him a bit when he gets growly and obnoxious with me. He's learned to respect me in just a couple of days, and now I just have to do my big-dog "posture" and he will turn tail and run away. I have been afraid to make him a scaredy cat, but it isn't going to happen. He has all the hard-headedness of a Lab, and is completely unflappable in any situation. We took him to downtown Montpelier for the trick-or-treat at the stores, and he just chugged right along and was completely unfazed by the costumes and crowds of people and children.

He's had a lot of chances for socialization this past week, as I've been having to work at cafes and coffeeshops because my internet at home was cut down to insanely-slow speeds (and doesn't work at all at night). So he's gotten to go into stores, plus got the whole downtown Halloween experience. He's done really well, and seems to be learning that it's possible that people will pass by you and not meet you, and that's okay.

Overall, he is showing himself to be such a smart, sweet boy. He's leaving the shoes alone, he knows when to settle and can mostly settle down on cue, he's stopped mouthing us so much, and he's so attuned to every one of us - he truly loves all five of us, counting Dana, and has a unique but equally deep relationship with each member of the household. It's pretty cool.

H1N1 and the boy.

Jake's laid up with H1N1 - has a good 101*F fever, is coughing, and is in bed laying still for many hours at a stretch. He never does that if he can help it.

We had been debating the vaccine, since he also has cystic fibrosis, but we never had a chance to even get it, so that point is moot now. However, after discussing with many members of his medical team, we had decided - get ready - not to get him vaccinated.

I'm not going to exhaustively detail why, but we discussed it extensively. The gist of it is that he is not a kid who responds typically to vaccination. I have a strong family history of adverse reactions. And while flu is serious, and this flu hits kids particularly hard, his immune system is strong and he is in excellent health. There's also this general belief that the vaccine is effective and that it doesn't have any (or has very few) side effects - and I don't see the science behind either one of those statements. We considered treating with Tamiflu, but the side effects are significant - more than half of the kids who take it experience nausea and vomiting - and the efficacy is doubtful. Many strains are resistant to it, and it only shortens the duration by 1-1.5 days. There isn't evidence that it prevents secondary bacterial infections. And, there's a chance of really gnarly neurological side effects, including self-injury, hallucination, and confusion. No thank you. Not for a kid with neurological wiring that already differs from the norm.

So, we're treating him with plenty of fluids, homeopathy (which I know many feel is pseudoscience, but I do believe in vibrational and electromagnetic energy systems, and I've seen homeopathy work too well to write it off), and TLC. He's fairly chipper - he is still smiling when he sees us, talking and asking for food and drink, and seems comfortable and not in pain. We'll ride this one out, and hope for a quick recovery for him.

The puppy's story.

So in the summer we got this labradoodle without entirely thinking it through. I saw a poster at the local general store, I wondered what labradoodles were, I found out and I thought they sounded like the perfect breed for us. I wanted to get a puppy this summer, because we'd decided that summer was the best time to go through the puppy phase for our family, and I really felt like Dana might die this fall or winter, and I just didn't want to go through a lonely time with no dog. So, totally selfish on my part, and driven by me not by anyone else in the family, really (namely, my husband!). He was unsure about it at first, as he usually is when something isn't his idea, but now of course he loves Burke.

Then, the service dog piece popped into my head. I just - started wondering if we could/should train Burke to act as some sort of assistance dog for Jake. We got him when he was seven weeks old, and I started reading about training service dogs. I bought a slew of books on it, read them all, and tried to think about what tasks we might be able to train Burke to provide for Jake. I'm still wondering about trainable tasks - the biggest one is to calm him, to redirect stims like flapping into petting him - Burke could, say, give Jake a nudge or lay his head in Jake's lap when Jake is stimming, and that could cue Jake to pet Burke, thereby stopping the flapping. And then calming - now I know, fully, that simply calming someone by your presence is not a trained service dog task. I'm still unclear where we are going with Burke. Skilled companion or full service dog?

I've been willing to set foundational behaviors with Burke, really try to work on his basic obedience, and foster a bonding and relationship with Jake and just see where and how it unfolds. I'm just going to take the next six months to a year to see where we want to go with this. Right now, I don't see the dog accompanying him to school. I also am really unclear about the trained task part and what that might look like for us. I keep thinking of other ways to redirect Jake when he's stimming. I am planning to talk to Jake's teacher/case manager and see what her thoughts are. I don't want to train the dog to do something that we can accomplish another way. But if he brings him calm and groundedness in public, and can be trained to do a few things that assist Jake in maintaining regulation in public, that could be a very, very good thing.

The whole experience has made me aware of this issue: just what trained task makes sense for a person with autism? The traditional definition of service dog doesn't fit neatly with the disability of autism. It is absolutely wild to me, how in every single area from education, to intervention, to mitigating a person's disability with a service animal, autism blows apart the current system. It takes it down to bare bones, core assumptions, and says: are you sure this is what it's really about? No one would question whether Jake has a disability. He's significantly affected by autism as well as a couple of serious health challenges. But one could definitely question what trained tasks a service dog could do that really would be a core task, something that just the presence of the dog doesn't do, and not something pointless or menial that you train the dog to do just so you can have public access.

I'm still trying to figure it out. And as I read on various forums about other kids with autism - say, a girl who can only communicate when her dog is present, because the dog grounds her and connects her in a way that doesn't happen when the dog isn't there - I see I'm not the only one who has wondered about this. I'm not the only parent of a child with autism who's said, "Wow, I'm sure a dog would help my child - but wait! If the dog's presence calms and regulates my child and prevents meltdowns, that isn't a trained service dog task?" It is kind of crazy, when you can't take a kid into a store by himself, but take him with his dog and he's calm and appropriate. Yet that alone does not a service dog make, under the current definition.

Now, I understand not opening the door to a world of "this is my service dog" when the dog is ill-behaved and really not trained properly. Or what about situations such as, "I have depression and my dog comforts me so he has to come to the grocery store with me." I'm not sure that seems reasonable to me. But "I have a neurological difference that makes my world absolutely chaotic, and when this dog is with me, his presence regulates my neurological system enough that I can pay attention to the things around me, such as participating in grocery shopping with my family" - might that not be different? It seems that often dogs that calm a person with autism are lumped under "emotional support animal" when that's not what they are. Autism isn't an emotional condition. It's a neurological difference.

Autism. Constantly pulling the rug out from under us. Upending us, making us consider new and different paradigms for everything.

And Jake and Burke? Best buds, and Burke will go lay near him and look at him when he has a freakout. Jake loves to cuddle under a comforter while Burke mouths him through it, for the deep pressure. Jake has lots of words for Burke - especially "Burke no!" and "Burke, go outside!" Burke feels it is his job to stay within 100 feet of Jake when outside. I'll look out and there will be Jake, climbing the rocks, and Burke laying on the grass near him, watching. I don't know about the laws, but it certainly seems like a good thing for this boy to have a puppy.

Language explosion!

It's been quite a week for Jacob. He has had some wonderful days at school, and he's been talking a ton. For example:

We're riding in the car. He says, "Uh-oh, my poo-poo!" (He has this thing about poop jokes.) I say, "Jake, do you really have to go poop or are you being silly?" In the most adorable, non-echolalic, nine-year-old boy voice, he says, "Bein' silly."

He hates Thursdays because Matt works late. I warned him early this time, as soon as he got home from school. "Jake, Daddy's teaching tonight so he won't be home until bedtime." Around 5, when Matt usually gets home, he looked around and said, "Daddy home?" This kind of spontaneous sentence doesn't happen often at all! Then we we were having a little cuddle in the covers with Katie too, and we were talking about how I can cook chicken too, even when Daddy's not home (because Daddy is Cooker of the Chicken, and I think he gets stuck and cranky when he realizes he isn't there). I said, "Can Mommy cook chicken just like Daddy, or is Daddy's better?" He looks me dead in the eye and says "Daddy cooks it better." Oh. Okay. Language is good.

Yesterday he picked out "Bad Dog, Marley!" from the library, and wanted me to read it to him! He paid attention the whole way through and echoed, "Bad dog, Marley!" and when I said, "Do we have to say 'Bad dog, Burke' sometimes?" he got very into it and repeated that too.

His relationship with our labradoodle puppy, Burke, who I got as a potential service dog (and have talked about his training on my homesteading blog a bit, but will probably be moving that topic here), has been developing so much. Wednesday we had a few minutes between our doctor's visit (more on that to come) and Open House at his school, and we took Burke and Jacob to the lake to run around for a few minutes. Burke is incredibly keyed in to Jake's every move, and follows him intently. Jake enjoys it, running away from the puppy and looking back to see if he's following him. I wished I'd had a video camera because their play by the lake was just so tender and sweet.

Now I'm emailing Jake's case manager/program director because I need to find positive, constructive ways to engage him in the afternoons and evenings. He needs way more stimulation than he used to - which is great. But I have to find ways to channel it positively, otherwise he'll end up watching a video over and over, or like last night, finding some exposed fiberglass insulation and pulling it out to shred! (You know that eerie quiet they get when they're into something bad? Yeah. I had that creepy feeling, then found a cotton-candy-sized wad of insulation pulled apart and on the floor of the bedroom.) A long shower and some soap later and he seems to be okay, no coughing or anything - I don't think he inhaled much.

So, lots of good things going on at our house, and in school, for Jake. I am just crossing my fingers, holding my breath, and whatever other cliche you can think of, hoping that the development continues and his health remains good into the winter.

Who is Jake?

And why has it taken me so long to start a blog about him?

He's my son. He's nine years old. He has big brown eyes, delicate features, and a lithe, muscular frame. He has autism, and he also has cystic fibrosis and a rare genetic disorder called alpha-1-antitrypsin deficiency.

He loves being outside, picking and twirling grass, straw or my flowers in his fingers. He loves snuggling, eating pizza for breakfast, and songs. We call him Primal Boy because he lives mostly on chicken, bananas, and fresh air, and far prefers nakedness to wearing clothes.

He was diagnosed with autism on his fourth birthday, in 2004, but in reality he should have been diagnosed long before that. Back then in the Dark Ages, a kid like Jake, who was smiley and happy to see people, who had some imaginative play, but who was severely behind in language development, got tagged with "severe speech delay" only. We were told he was too social, too happy, too content to have autism.

Somewhere between age two and a half and three, we started to realize that he wasn't going to grow out of the toddler oddities that accompanied his speech delay. As he edged past three, his development seemed to be going backwards, not forwards. I was still chasing him down at my husband's baseball games, trying to keep him off the field. Library storytime was impossible - he would not sit. He began flapping his hands and vocalizing loudly whenever he was excited. People began to ask us if he had autism.

It took a while to get in with a specialist who could diagnose him, but since we were sure we began the ball rolling for school services while awaiting a diagnosis. In these cases it helps to know a psychologist who can confirm the diagnosis quickly. That piece of paper moves mountains. We were lucky in that regard, or he would have been close to five before he received services of any sort.

Despite beginning full-time in a special charter school for children with autism in Florida, Jake's progress that first year was slow. We moved to Vermont and he began kindergarten in a full inclusion setting. It's been a bumpy road, trying to get an appropriate program that allows him to be with his peers, yet gives him the intensity that he needs. Finally, this year - fourth grade, nine years old - we have a new program. And so far Jacob seems to be soaring.

The new program is groundbreaking, in that it isn't "resource room" or the "autistic unit" as they so respectfully called it in Florida. It's self-contained, but after half a day there, Jacob joins his regular class at his home school. He joins them for lunch and recess. With support, he is able to be in the classroom with them for over an hour, then go to his special with them: library, art, music, or PE.

The intensity is what we've been searching for since his diagnosis. And he can receive one-on-one intervention, yet still have many opportunities for social development. It's a nice balance between being with other people with autism and being with people who don't have autism. As he gets older, I become more conscious of how hard it must be for him to be the only kid with significant autism in his regular class. It seems important that he have a chance to connect with other kids with autism, to learn about himself, to feel less alone.

A note about the title of this blog: I'm assuming you get the Joyce reference. But "autist" as a term isn't something that you hear often. It's used primarily in England and Australia. The PC way to talk about someone with autism is to say that: "Jake is a child with autism." It's assumed that saying, "Jake is autistic," means that autism defines him, proscribes who he is, like saying "Jake is epileptic," rather than "Jake has epilepsy." But I don't see it quite the same way.

There is also the pro-autistics movement, a group of adults on the autism spectrum who use the term "autistics" to describe themselves, who identify positively with autism. I like them, because they see autism as a neurological difference that isn't something to be "cured" anymore than being a writer or being gay should be "cured." I don't seek to cure Jake, although there were times, soon after diagnosis, when I thought that was a worthwhile goal. That doesn't mean I don't want him to learn to live in the neurotypical world more easily. I do. I want him to learn to relate to other people, to grow socially and emotionally, to learn language, to be happy. But I want to make sure that whatever education or therapy we do is respectful of him as a person, always.

I use "autistic" and "has autism" interchangeably. When I say "he has autism" I don't mean it like a disease. I don't see it as a scourge, something to be scrubbed from him, eradicated or minimized. When I say "he's autistic" I don't mean that's all he is. And autist just fit somewhere in between.

Wrestling with these issues, and not wanting to speak for my son, who can't yet speak for himself, is why it's taken me so long to start this blog. Finally, as I settle into role as mother of an autist, as he loses his top front baby teeth, as he learns to read, as he begins to string sentences together - here I am. Writing about him.