Portrait of the Autist as a Young Boy

In Answer to the Child Development Questionnaire

2011-09-08T08:42:00.001-04:00

In Answer to the Child Development Questionnaire

was this pregnancy normal? it was a surprise,
my first babe still at the breast, still
needing me, just beginning to walk
and talk. i held the thought of him in my mind,
another infant, a second child, when we
had not yet become accustomed to the idea
of any child at all.

i cherished him, though, grew him in my belly
with joy, planned his birth, sewed him clothes.
i nursed him at my breast the minute he was born
into my arms, into water, into a humid
Florida day washed clean by a thunderstorm, amid
the soft, insistent hoot of an owl.
i felt his belly as he slid out of me - wide, taut,
bigger than his shoulders. and then i bled.
i bled until i was a fragile shell of me, until
i could barely see. my mother and his father fed
him dropperfuls of brown rice water that night,
walking him the length of the house and back,
patting him, letting me sleep, waiting for my blood
to make milk again.

i tied him to my body with cotton, wrapping him close,
snug against my belly, while i chased his sister, laughing
her head of blond curls. i nursed each in their turn
and sometimes together. i gave it all--
everything i had and more, that first year. and when
they told us he would someday die of the disease
he was born with, i felt the world crack. so when two
months later the towers fell, i simply shrugged. it was
the way the world was, now--broken, terrible,
a place where people come to die early deaths.

he toddled. he talked, and then he didn't
anymore. he spun in circles, laughing. he ran
across the floor and back again, and again,
never having enough movement, enough
spin, enough of hurtling his body in space. he knew
himself in movement. he counted, he sang
songs. but he didn't speak again.

fast-forward through a side trip
through the strange world of inheritance, heartache
that our girl might not be spared, that air might one day
too soon not fill her lungs with breath. that no body
we make is safe from disease. and that the letters
that make up the boy's self spell certain doom. and then,
so long after the realization had come to us, the period
at the end of a sentence: he is and will always be
alone unto himself. autism.

i fought valiantly at first, thinking i could fix
it, make it better, take it away, vanquish
it. anything, everything i could put into his mouth
that might help, i did. sent him to the best school,
too early, a tiny child in diapers, crying because i left
him there with strangers to be made less autistic,
to be molded to this world that would not understand
him. finally, i relented.

early childhoold was a balm. not perfect, often exhausting,
but he spent it as wondrous and joyful as a monk,
enlightened, living each moment in the present
and not asking for more. for some time, that was enough--
i watched him, tried to be like him, to make myself
think only of the present, not the unknown, dark
future.

suddenly i'm slammed against reality. a leanness
of face, outgrowing his body, the fur of puberty
beginning to show itself. a cool reserve with me,
who he used to plaster with kisses, press his body
against and sigh with contentedness to feel
my soft, striated belly once more, part of me. now,
a strength to match my own, and overmatch it, wiry
and brute, blind and seeking only relief
from frustration, trapped inside.

storms overtake his mind, he cries out,
he knows nothing of why or how or what to do,
just that he hurts, that he feels pain.
they pass with the quickness of a thunder
shower, leaving cool crisp air in their wake.
still he presses his feet against my legs
at night, still he looks for me when he wakes,
his fingers seeking my flesh and sighing
when they find it, still solid.

this is the history of his development. and of mine.

New language.

2011-07-07T17:28:00.000-04:00

Jake is having such a terrific summer. We are seeing a big increase in his expressive language - and my mom noticed a big jump in receptive from last summer (as she put it, "I can ask him to do something now and he will do it!"). But it's this past month or so where we have seen lots of new words, new sentences, especially. And using "I" to start them instead of echoing what we say. So if you say, "Did you go to Daddy's baseball game?" he can now spontaneously reply, "I went to watch Daddy's baseball game," or something similar. Not an exact echo, plus proper intonation. He is also asking for things more often and more completely and clearly. And sometimes when you just start him off with, "I..." or pointing to yourself and mouthing "I..." he will surprise you. I did this the other day and he said, "I like funny!" And if he is melting down and I say, "What's the matter?" he will reply, "I sad. I crying-sad!" Crying-sad is what he is when he is crying, you see.

Life has been incredibly busy but good. We are working on a sight reading program, eReadingPro, which was generously donated for us to trial. We are in the beginning stages but so far it is going well and I will post more about this as we get further along. They have been using mostly phonics in school, although I think they also tried Edmark, but he isn't really reading yet and I'm determined to change that by the time school starts again.

Born to Run

2011-04-11T15:52:00.000-04:00

Jake and I went for a walk/run (with Burke, too!) yesterday, as it was a gorgeous, 65-degree day (although you can't really tell from the pic, but it was, despite the remaining snowbanks). I was absolutely struck by how much joy he took in running, how natural his gait was, how beautiful and effortless his motion. It's something I want to foster and cultivate in him, this love of running - perhaps he got it from me.

We'll be running a 5K to raise money for autism on May 22nd. Me, Jake, our daughter, my husband - all of us. If you want to sponsor us, feel free to use the Paypal donation link in the upper right-hand corner of the blog. I am hoping to have Jake train with me for it. His 5th grade class is also going to be participating. My daughter's 7th grade class organized the run. It's their community service project for the year.

Burke shines.

2011-04-03T18:39:00.000-04:00

On Tuesday, Jake had his CF clinic checkup. He goes every three months to keep tabs on how he's growing and how his lung health is, and to have a culture of his throat bacteria to see what's growing in there, if anything.

Burke came with us into the clinic appointment for the first time. He did fantastic! He stayed in his down-stay while the parade of professionals came in and talked to us, just wagging his tail and looking happy when they praised him. Then we went to three different stores - no, four. Lunch at the Coop Store, the Apple computer place to grab a charger for Jake's iPad (yes! his iPad! I am overdue on a post about that - it came on Monday, and we got to take it with us Tuesday, and he loves it and it's amazing), then to two different clothing stores, as we needed to stock up on summer clothes for everyone before our Florida trip in a couple of weeks. The kids just keep growing! Burke did great through all of it. He was really a champ.

Katie tried to take a pic of all three of us, but the lighting was terrible. But here are a few shots of Jake's visit, and one of Burke in his down-stay. Yes, perhaps he should look a little more on-duty? I don't know. I was happy that he was calm and behaving well, and there wasn't much for him to do during the visit besides be there if Jake needed him.

Spring fever.

2011-03-22T08:40:00.000-04:00

Jake's restlessness and difficult behaviors have continued. I have managed to pull gluten, and I want to whisper it so I don't jinx it, but he ate the Still Riding Pizza again last night. (First time I made it, he gobbled it down, the next two times wouldn't touch it, then last night ate it again.) We're trying English muffins, some homemade bagels, and gluten-free waffles. None of which he'll touch. So I got him some Spongebob fruit snacks and marshmallows yesterday and he gorged on sugar. I wonder how much of his problem is yeast, because he ate it all and drank a bunch of juice like his body was starving for it. However, he then calmed down quite a bit. No hyper crazy behaviors last night. It's a balance because he seems to need a ton of carbs - he's so active - and he's so limited in the carbs he will eat.

Burke and I have been doing almost-weekly training sessions again, just the two of us, since Jake's in school and I tend to go grocery shopping on Mondays when I have to go to town anyway. His first time out in a while, he was very sniffy of people nearby (especially if they have dogs, he's incredibly interested - I know this because a few who have wanted to make his acquaintance, we make Burke sit and say, "go say hi," and the person will share, "He probably smells my dogs"). He also particularly loves children and anyone with special needs. We have met a few people with special needs who just immediately take to Burke, and he truly loves to give them love and get pets more than he does typical people (which is still a lot - I often say he would go home with just about anyone who pets him and coos to him!). He just seems to have an instant special bond. I also feel like so many folks with special needs could benefit from having a pet dog, if only for the companionship and undying love they provide. Last fall in Home Depot we met a young woman with Down Syndrome who was so over the moon about Burke, I just wanted to give her a dog. I know that it's a lot more complicated than that, but wow - she so instantly and completely connected with him and he with her. It was something special to watch. And then he quickly turned his attention back to his young man, Jake, with whom he has the most special bond of all.

This weekend Jake spent a lot of time outside, and Burke couldn't go out because the chickens are accessible right now due to our fence being buried in deep snow, and he's proven that he can't control himself when the chickens are available. He was so upset, and paced around the house watching Jake from every window. All day. I had to watch him, too, to make sure there were no dashes down to the brook, and for a while we both lay together, me reading a book and Burke just watching, in front of the bedroom window. He's really such a good boy.

And yesterday I got about half a dozen compliments - some from gristled, burly men who you'd never imagine to say this - about Burke. "He's a beautiful dog," or "What a beautiful dog," is what I get most of the time. The couple of women who stopped to talk about him as a service dog were very complimentary about his behavior (we wandered up and down the food aisles at Big Lots with nary a sniff, and he even left spilled dog kibble on the ground after being told "leave it" in the pet aisle). I like educating the public about service dogs (most say, "How hard for you," and assume I'm training him for someone else and will have to give him up) but I do get exhausted and sometimes just want to be left alone. I get a lot less conversation when Jake's with me.

Burke was exhausted after doing a supermarket and Big Lots for about 45 minutes each. He came home and slept the day away. I'm making a concerted effort to take him out more between now and when we fly next month. He is doing so well, I don't anticipate any problems, but I want him to be freshly socialized and up on all his commands. He is doing a lot better with following commands in public. Before he would sort of go into this overwhelmed state; he'd be good, but it took so much effort that me saying "sit" didn't always register. Now we're refining things like "back up" and "heel closer" (he tends to wander to the left of the cart a little too far and the ever-present "leave it" for people, food, and other distractions.

Funny distraction yesterday. A local celebrity was in the store, very colorful guy. For some reason Burke was particularly interested in him. Maybe he smelled like animals, I don't know. Then he started whistling and slapping his knees and feet with his hands as he perused the merchandise (we were both in the natural foods aisle, and no one else was there). Well between the slapping and whistling, Burke couldn't stand it, and moved toward him to investigate. He apologized, but I explained it was good practice. Burke is particularly sensitive to whistling and clapping - he sees them as addressed to him, like a command, probably because of his field lab blood. So it's always good for him to learn that in public, he doesn't respond to someone else whistling or clapping or playing percussion on their legs.

It's getting to be spring and we're going to start work on having Burke follow Jake and bark if he gets too close to the brook. This exhausts me, just thinking of making this happen, but I'll enlist our trainer's help. First we have to melt some snow, recover our electric net fence, and secure the chickens. And if we can get Burke to do this it will be his most important job. Good thing he loves to bark.

Late winter insanity!

2011-03-17T07:58:00.000-04:00

Jake has been on a tear lately. I posted this over at my new Tumblr microblog about our toilet adventures. Yesterday I caught him trying to flush Matt's toothbrush - twice. The day before that it was flushing bits of toilet paper repeatedly. Like ten to twenty flushes.

At school, he's been making silly sounds, saying "poopoo into the toilet," and rocking back in his chair. His para called it, "he feels uncomfortable in his skin." At home, it's a lot of restlessness, a lot of perseveration, nothing seems to make him happy. Not watching his iPod (oh how I wish his iPad were here already! - I ordered at 10am EST, I should have just checked out at 6:30am when I first got up to see if they were available and put it in my cart, because it would have been here any day now, instead we wait till early April). And even if we had the iPad, I bet it would not be the magical occupy-er I am hoping for. Not right now. This is beyond anything occupying him.

I don't know if it's late winter restlessness, or gluten. We had pulled gluten over February break, but once back at school he began asking for bagels. I have not been able to find a good gluten-free bagel locally so I just said, that's fine, let him have some bagels until I find a sub. But the gluten mania has grown. He began refusing the GF pizza that he previously loved. Matt bought bread for sandwiches for Katie and he has been asking for it, then cramming his mouth full and spitting it out. He won't eat his chicken at lunch; he asks for a bagel instead. It's just gotten so much worse.

So, I have to pull it back out. Even Matt, who is normally "nah, no way is it diet-related," thinks it could be the gluten that's at the heart of these crazy behaviors. I am going to give him his homeopathic constitutional remedy, too. And I found a recipe for bagels online and am going to give that a try. He won't eat bagels at all at home, so I'll send them to school with instructions to give him one when he asks for a bagel. The funny thing is, he is now refusing the gluten-free oatmeal - which tastes no different from his usual! It's just not contaminated with gluten. Gotta wonder about that gluten-opioid connection. He seems to crave it like a drug, for sure.

That's the news from our house. Our very tired, tired house. With a functioning toilet - for now. I'll update on Burke in a few days, but the short story is, he's doing great, but we need to brush up on public outings and work with him around other dogs in preparation for flying with him to Florida in a month. Eek! I think he'd do great as long as there are no other dogs. It's hard for us to practice with other dogs around in public places right now because of winter, and the trainer's is such a controlled setting that I have no idea how it would really go in a "natural" encounter.

Thank you!

2011-03-04T10:52:00.000-05:00

I'm sorry for my long stretches of not posting. It's been one illness after another these past few weeks. Throw in school vacation and some serious work deadlines and I'm only just surfacing.

I wanted to update you, though. We got to our goal! Jake will be getting the iPad 2 as soon as it ships next Friday! Even better, we got 72 (actually 73) orders, which means that for those extra 12 orders we got an extra $100 Apple gift card. So we will be able to get him the 32GB model, which is fantastic because his iPod Touch is 16GB and already almost full with video and apps, so I can imagine that on the iPad 32GB would be welcome. He likes to watch lots of different videos and we'll be taking even more video with the iPad's camera for video modeling. I can hardly wait to get started! I have a whole list of things I want to video for him.

I'm still selling the ribbon keyfobs for $12 including shipping, if anyone is interested! I'll repost that info here. And look for more updates in the future. I'm coming out of winter hibernation.

Since we already have the iPad, funds from sales of these keyfobs will go toward educational apps for Jake, and the bombproof cover that we will need to get for him (an Otterbox Defender, I think, is the way I'm going to go - it's around $50).

The keyfobs go around your wrist and are a great way to show your support for autism - and keep track of your keys! You can even write contact information on the inside of the loop for safe return of lost keys!

One keyfob is $10 plus $2 shipping = $12. Email me to order! I take Paypal. Thank you so much for your support!

Moving forward.

2011-02-15T08:06:00.000-05:00

Jake's in a big growth phase, and I love it. He's very talkative and beginning to answer some questions spontaneously. Last week, I asked (like I do every day), "How was your day?" when we got inside after getting him off the bus. "I good," he replied. That's a huge step for him. He has also been answering how the bus ride has been, since he's on the big bus now (and after three weeks of having an aide on the bus, just started riding alone this week!). I say, "How was the bus - good, okay, or not so good?" (I vary how I put those options because he often repeats the last one automatically. "Okay," is always his answer.

I'm on a mission to improve his diet and perhaps start the GAPS diet or some variation on that closer to SCD (he won't eat yogurt at this point, or anything with a soupy/thin texture). I feel like I have a reasonable approach now, compared to when he was younger and we did the SCD and then GFCF diets. I'm not going to drive myself insane trying to do this. I'd like to take him off grains completely, but that's not going to happen immediately. He eats oatmeal for breakfast and has been remarkably inflexible with any other choices. Once in a while he'll eat a bagel with cream cheese, waffles or pancakes, and only the pancakes really help my mission out of those choices. (You can make a really decent pancake out of banana and egg.) His meals are pure meat, usually chicken, and I want to expand that back out to beef, pork and lamb. He eats bananas, apples and grapes. His snacks are gluten-free, but not grain-free: tortilla chips, Veggie Booty, salt and vinegar potato chips, and popcorn.

My plan is to first get the gluten out of his diet. Bob's Red Mill Gluten Free Quick Cooking Oats are on the way thanks to Amazon Prime. That takes care of breakfast for now, and we can play with pancakes over February break and see if we can get him eating grain-free pancakes. He mostly eats chicken for meals, but loves spaghetti with red sauce and pizza. I have Tinkyada spaghetti and will reintroduce that for dinner one day. I need to find a good GF pizza crust - and by good, I mean one he'll eat. So that's my main mission. I also wonder if he'd eat a GF bagel and may try some. So when the grocery funds are a little more flush, we'll try the Kinnickkinnick pizza crusts - I've heard they're good - but I'm searching around for other ideas. He doesn't even like all regular pizza crusts, so it's a toughie. He likes his pizza NY-style -- thin, chewy. Like his mama.

On the Burke front, we're kind of treading water. I finished his eighth training session and am taking a bit of a break from sessions till spring hits. It's great for my work life because I get half a day back! But without the motivation of going to the trainer, I haven't been keeping up with working with him as much. Another goal for over break is to get him back on track. We need to do some long-line training outside (where you use a 30-foot leash to have control, but to move toward off-leash work and retrieval). And we'll continue to work on the bond between Jake and Burke. Handling is also a priority since we hope to take him with us through security and into the plane cabin when we fly to Florida in a couple of months. And loose-leash walking is another biggie. He's coming along, it's just a process.

And we're up to 46 out of 60 orders on the iPad challenge! The post is just below - and one change is that now, you just have to put my name in the Challengers Name box right above the "Add to Cart" button. Easier! Thanks to everyone who has contributed.

Going grain-free.

2011-02-05T07:16:00.000-05:00

I recently found this site that does Grain Free Meal Plans. The mother who owns the site has a child on the autism spectrum. I'm feeling very drawn back into changing Jake's diet to this one, which is very similar to the SCD or Specific Carbohydrate Diet (the site PecanBread has good info on it too).

When Jake was first diagnosed with cystic fibrosis, we tried the SCD. He was mostly breastfeeding, so I did the diet. I lost a lot of weight and felt really good. But with two toddlers and everything we were going through with trying to give him enzymes, I got discouraged - most of his required cystic fibrosis medications were not "legal" on the diet. Ultimately I abandoned it as too restrictive. He ate a ton of wheat and cheese as a two-year-old; in fact, I think those were his main foods. When he was diagnosed with autism at three years old, I took him off gluten and casein. We did that diet for three solid years.

I've been going back through my past a bit lately, and not pursuing grain-free and SCD, or even just continuing gluten- and casein-free, is one of my regrets. I just didn't understand fully what benefits could be seen from doing that with him, and I had "given up" on a cure. My perfectionism got in the way; I couldn't possibly manage all the supplements and complicated regimens and cost of seeing a naturopath/DAN doctor, so why try at all?

Well, now that I've gone primal/paleo, especially with this 30-day challenge I've been doing (and blogging about at my Primal HCG blog), I've also been reading about the health issues that come with consuming grains. I'm getting back on the grain-free-for-the-whole-family wagon. It's going to be tough; my husband does all the cooking around here and although he's very much gone primal with me, he does not like to eliminate entire food groups and he's had a strong resistance to letting go of rice and corn. I think I've finally got him to let go of gluten, but his habits are tough for him to let go of.

So, it's going to be a process. But I am going to do a lot of reading and plotting. Jake's diet would not be hard to modify to grain-free, and I think I could even do an "intro diet" of just boiled meat with him over a few days. Chicken is his go-to protein and I don't think he'd mind just eating it. He loves sliced apples, bananas, and grapes.

Glimpses into a world.

2011-02-04T09:27:00.000-05:00

Jake's been very verbal lately, and very interactive. He wants lots of tickles and will specify the body part: "Tickle my feet, please!" Although he sometimes gets our names mixed up, he has been correcting himself. "Daddy, Mommy, Katie, tickle my neck, please!"

Along with this comes increased stims, or seeking out of new ways to regulate himself. For example, poking holes in all the K-cup coffees and pouring the grounds over his hand (over the garbage pail, at least). Last week it was getting into the large sack of King Arthur flour and spreading it everywhere. And pouring salt from the shaker all over the counter and floor and running his fingers through it. Oh, and tapping on everything - an empty stainless steel container is a new favorite, and it's loud! My budding percussionist.

On our snow day he asked for a new Dora video - "Mommy Wizzles," is what I got. Praise the Internet, I hopped onto the iTunes store and looked through all the Dora episodes by season and found it. "Wizzle Wishes?" "Wizzle Wishes?" When he repeats something I know he is affirming it. Sadly, our connection is so slow that it took about four hours to download, but he was very happy when it was finished.

A quick Burke update. We had a training session with another dog (our second, and our third follows next week) and a training session in the supermarket as well as a home visit. All were incredibly helpful in moving us forward. With it being winter, Burke's suffering from a lack of socialization and exercise, but as soon as spring hits we'll be doing some city visits with socializing with other dogs on the street (ie learning to ignore them) as well as more outings with Jake. I can't wait! We're also hoping to take him on the plane with us in April. I already have tickets and need to contact the airline and drive there (which is really freakin' far - 2+ hours each way!) to do a runthrough before we attempt it "for real." I think he'll do fine though. It's more a matter of convincing my husband that it will be okay, and just doing some research on whether we'll fly him as "in training" and therefore as an emotional support animal (ESA) or whether he's ready to fly as a full service dog, and what paperwork is needed for ESA status. I need to make an appointment with the pediatrician to discuss this and the letter/paperwork we'll need. I don't relish any of this since it all takes away from my work time. But, there it is. This is also important work!

I bought The Affect-Based Language Curriculum (ABLC), Second Edition in December, because our team autism consultant felt it would be the best way to teach Jake language. I feel like I'm falling down on the job not staying on the team about all this stuff. They also have an iPad that belongs to the school, but it's taken three to four months just for the special educator to get hold of it, and now I'm waiting for them to put apps on it. They sent it home a couple of weekends ago with nothing on it and Jake was just frustrated. Anyway, the ABLC looks great, but I have to find the time to go through it and start implementing it at home.

My daughter is pushing to homeschool, and I'm tempted. I'm tempted to pull both of them from school. The bigger issue is, how would I work and teach Jake at the same time? Even Katie will require some investment of time, but Jake would require a lot of time and energy. I just feel, sometimes, like I could move him forward more quickly than they do at school. At the same time, he loves school and I think the social pressure of wanting to relate to other kids pushes him to come out of his world a little. At home, there would not be that motivation.

Please help if you can!

2011-02-02T10:23:00.002-05:00

Please help our efforts to get our son Jake an iPad! Jake is 10 years old, minimally verbal and significantly affected by both autism and cystic fibrosis.

His iPod Touch has opened up new worlds for him. BUT - the augmentative communication software is too hard for him to use on it due to fine motor issues! We are looking to get an iPad to help him communicate with us better. Due to high costs for his ongoing care, we can't afford this expense out of pocket, and insurance/school won't cover it.

The keyfobs go around your wrist and are a great way to show your support for autism - and keep track of your keys! You can even write contact information on the inside of the loop for safe return of lost keys!

One keyfob is $10 plus $2 shipping = $12. Email me to order! I take Paypal. Thank you so much for your support!

AND/OR - we are still doing the iPad Challenge with The Puzzling Piece. I've gotten discouraged because we're only up to 15 out of 60, but I've found out that for every 12 we get, we get a $100 Apple Gift Card, so all is not lost! If you'd rather contribute this way, here are the instructions:

http://thepuzzlingpiece.com/ipad.html

If you order one of the necklaces or key chains listed at this link, some of the proceeds to go help autism - you can pick the organization you want the money to go to. If we get 60 orders, Jake will get an iPad for communication. For every 12 orders we get, we get $100 Apple Gift Card toward his iPad, so I'm hoping that at the least, we can get part of the way there! We are at 15 now so every order counts!

http://thepuzzlingpiece.com/products.html

That's a direct link to the product page. ONLY the $20 necklace or keychain count for the iPad challenge for J, but of course you can order whatever you want!

Please note that when you order you MUST put Lauren Ware in the notes section in Paypal (you have to click to add this toward the end of the order process) when you order or it will not get credited to us.

If you want to send a check, you can do that too - email me for details, I can send you my addy and you would make the check out to The Puzzling Piece, then I would ship the item(s) to you.

If you're in Canada: Paypal me $25 for one necklace or keychain and I'll order for you, then ship to you once it gets to me. If you want more than one, email me - I'll only charge you actual shipping (it's steep through The Puzzling Piece to Canada).

Upswing.

2011-01-23T19:44:00.000-05:00

Just witnessed one of those moments - where you get the chills in a good way as your kid does something you didn't think possible.

It's not a huge thing. And yet, I feel like it could be the key to opening up his world.

We have done Skype with my parents and brothers, who live in Florida, every once in a while. Often it's frustrating as one end or the other of the connection drops, due to their old computer hardware or our spotty not-quite-broadband internet connection. Tonight was no exception. But we reliably had a thumbnail live video of ourselves. I dragged Jake to the laptop on the couch and he said "Hi" and repeated "I love you" and "I miss you guys." And then...I asked him to sing If You're Happy and You Know It, which he's been singing on the bus and a bit at home recently. He did - super clear, the whole way through, watching himself in the little thumbnail the whole time. And then Twinkle Twinkle. Then I Am A Pizza. Then I Am A Pizza in French. Then Little Bunny Foo-Foo - only not the last day, because he gets scared when she actually turns him into a goon. Completely engaged the whole time, with better articulation than I've heard from him even singing it to himself.

So. We just have to channel his inner Leo. He loves to watch himself perform on video. Live video modeling. A way to engage his language - engage him on video? I don't know. But I'm excited about the possibilities, and want Apple to hurry up and get an iPad with a camera on it so we can do FaceTime and explore this. Also going to take the webcam we have and hook it up to my monitor and position the laptop (connected to monitor) near it, so we can have him both watch himself in Photo Booth and record him on the webcam (can you record video with a webcam? I can't imagine why not). Must figure out the technology side of it. Am very hopeful and excited. Even if I just end up with a bunch of videos of him singing, it will be worth it.

Hopeful. Oh, and he's doing so much better with sleep - knock wood. No more Benadryl needed.

Exhaustion.

2011-01-17T14:06:00.000-05:00

We've been sick with some fluey cold virus - one of those colds that lingers, that is "more than a cold" with low-grade fever and body aches, but not sick-in-bed flu level either. All week last week, we struggled with it. And it bounced around among us - first Katie and Matt were sick, then I got sick. Jake seemed to do his usual: he fought it at a low level all week, and then, when I thought he was over it, they sent him home on Friday after a meltdown, with a low-grade fever.

I think we're all on the mend now, and the elderberry tincture I made and decanted seems to have helped considerably. Still, I'm just tired. With Jake, sometimes a virus means disturbed sleep and behavior, and it did mean that this time. He was alternately giggling hysterically and crying despondently. I had to give him Benadryl to sleep almost every night. I've tried melatonin; thus far it seems either not to have an effect or rile him up more. It's hard to tell. But within an hour, Benadryl takes him down to very calm and then sleeping. Even from complete freakout/hysterical crying. It's magic. We can use a very small dose just to take the edge off the freakouts during the day.

Now, I don't like drugging my kid, but at times I find it necessary for the sake of my sanity and his. I wish I could pinpoint what is going on biologically when he gets sick and out of sorts like this, but I can't, so right now that's the best I can do.

We're on the fourth day home - school is closed today but it's a teacher workday so Matt's gone - and my house is littered with tiny bits of paper he's shredded. But not too bad. And in between the difficult times he has been spectacularly lucid - interactive and playful; his language is surging forward; he's saying new things and wanting us to repeat them.

But I'm tired, and it's too cold to take him outside (5 degrees above zero here at the height of the afternoon). And I have work to do. It's going to be a long week this week; I'll volunteer tomorrow for half the day to cross-country ski with him; Wednesday Matt takes off work and we head 1.5 hours south for a dentist visit with x-rays (I need to get together a social story for this!) and a CF clinic throat culture; Friday I hope to have enough work done that I can head to Smuggs with Matt to snowboard until 2pm (he has a late-afternoon appointment there and it's 50% off for Vermont residents on Fridays). Not that I'm complaining; getting to cross-country ski and snowboard is always a good time. The juggle though, it's tough sometimes - and sometimes parenting just wears a person down.

A request.

2011-01-12T11:08:00.000-05:00

I just found out about this challenge - if we can get 60 orders for $20 autism keychains or necklaces, with the proceeds to benefit the autism charity of your choice, The Puzzling Piece will send Jake an iPad!

You must put "Lauren Ware" in the Notes section when you order - click "Add instructions for seller" and a text box will pop up. Can't hurt to add "iPad Challenge" in there too! Otherwise the order won't "count" for Jake's iPad. You also have to order either the necklace or keychain that are $20 each; no other items "count" toward the challenge.

Thanks for participating if you choose to do so. Make sure to put my name in the notes when you order or it won't count!

Order Your Keychain or Necklace for Jake's iPad Here

The challenge is open to anyone affected by autism, so pass it on to someone else who might want to try for an iPad, too.

The Puzzling Piece iPad Challenge

Happy New Year!

Posting break.

2010-12-21T17:11:00.000-05:00

Things are going well here, but have been so busy with the holidays. I'm going to take photos of my autism awareness key fobs and post a tutorial - but it might be after the New Year. I am needing to focus on holiday stuff, even though I don't really feel like we're doing much. Somehow it is still such an overwhelming time of year.

Jake is great. Burke is great. I have hopes to take him on the flight to Florida with us in April.

Little drummer boy.

2010-12-13T10:08:00.000-05:00

It's that crazy time of year and I am just trying to let go and ride the wave of the next couple of weeks. To avoid working, I am trying to figure out what kind of drum or drums to get Jake for Christmas. I think this is going to be his big present - although I might just take on the task of teaching him to snowboard and get him a longer snowboard and new boots and bindings. His old setup is too small already. He skis and has a ski setup for this winter. In truth we can probably sneak by one more season, teaching him on the 123cm board we have and just find him a pair of boots in one size larger - and I just found some for $20 on craigslist. Perfect. Because things are tight enough that I'm redeeming purchase points for gift cards; I did Shutterfly photo books with one and will soon have a bunch of money to spend at Amazon.

I can't decide whether I should take up the space in the basement with an actual real drum set or get him a hand drum. I am leaning toward no, we just can't find space for a drum set right now I am thinking drum set for birthday would be good, hoping we will have space for it in our newly finished basement by then. And I can ask around for someone local who might have one for sale or even loan - I do believe there is a drum set that is not in use that is residing within a mile of our house, in fact.

So far, the frontrunner is a Remo Djembe. I was seriously considering one of the Gathering Drums, but I feel like the 21x22" one is huge, yet 22" by only 8" high seems odd - will he sit on the floor to play it? Plus, everything takes up space and if we think longer-term to a drum set, we don't want a big hand drum too.

The Djembe he can actually wear. We have a konga, but it's tippy for him. He does play it though. And we have the Remo Floor Tom, which he also plays both with mallets and hands. I need to replace the mallets. We have an amazing vintage drum from Matt's childhood that has real skins as well - I don't know what to call it; it's about the size of the floor tom with two skins but one end smaller diameter than the other.

'Tis done. To work. Once the supplies get here, I will post an instructable for the teacher gifts I'm making this year. It's relevant to this blog. I'm excited; I feel very clever for thinking of this idea. They are neat enough that I am sending them to family as gifts as well.

Lap up.

2010-12-09T10:21:00.000-05:00

Burke demonstrating his new "lap up" command - laying on Jake's lap for deep pressure and regulation while Jake does his nebulizer treatment. Jake has never held the neb independently, and has required us to count constantly to get through the treatment. But now he will hold it 80-90% of the time himself and uses his other hand to pet Burke and play with his fur. We've always used a video to help pass the time, but now Jake actually pays attention to that and gets through his treatments much more smoothly and independently.

Pretty neat stuff! I have never been able to get up and walk away, grab the camera and take a pic - the treatment would have been done if I'd done that without Burke to help. (By the way, that is a weighted blanket under Burke.)

Tap and shred.

2010-12-06T11:09:00.000-05:00

We are in full winter mode. Paper is being shredded - even books if I'm not careful. Things are being tapped - computer monitors, rowing machine computers (I think it's been tapped to death), electrical panels in the basement (it sounds cool?) and more. I have provided him with drums to tap. I have provided him with my recycling bin to shred (he likes to scatter the paper everywhere first). He has a broom in the basement which is just for him to pick straws out of to twirl, tear and twist.

Winter is tough. This time, we have sensory space: a gym mat, mini tramp and the rower downstairs, for now. Maybe next weekend we'll hang the sky chair and/or hammock. Swinging might help. Last week, he had fun swinging outside despite the frigid temps:

And Burke is coming right along. We had another training session on Friday. I taught him "lap" today using the lure-reward method and my lap. Will work on it more - I really just introduced the command. We're working on "back up," sit at a distance, desensitizing him to collar grabs, and a cue for greeting people in public, "go say hi." I got some great strategies for keeping him calm and under control during greetings in public where he can get a little excited. The trainer is extremely happy with how he is doing as far as behavior, and credits the neutering with a big role in his newfound calmness.

I have been promising myself I'll get pics of Burke and Jake all ready to go with Burke in his work vest, but my house has been covered in tiny bits of paper so often that I just never feel "up to" taking a photo with that kind of background! I'm vacuuming today, though - again, LOL - and have on my list to get Burke dressed and a pic snapped later. For now, you'll have to content yourself with a very sleepy Burke who let himself be tucked in:

For a (very long) update on the addition plans or lack thereof, visit Birth of a Homestead.

And now, neutering, nebs and training.

2010-11-29T10:00:00.000-05:00

I got wrapped up in my little world in the previous post, and never talked about any of these. "Nebs" = what we call Jake's twice-daily nebulizer treatments. These used to be just a five-minute hypertonic saline treatment to help liquify, break up and clear mucus from his lungs - along with using something called the Flutter to help him clear his lungs. Now we've added in an inhaled antibiotic, tobramycin. So it's doubled the amount of nebulizer treatment time. This morning was a rushed affair and I will need to adjust our morning so that we can get it done. Other mornings if we've gotten up late, I have just skipped the treatment - he is healthy and it's not a huge deal for him to skip it. He doesn't have much mucus to cough up (yet). But with the antibiotic, skipping is not an option.

I worried about how Jake would react to the change in routine, but he is doing well. We have to count through most of both treatments, and I try to put on a favorite TV show and let him settle in to watching it for about ten minutes. I have to hold the mask on his face, but he is starting to help hold the whole shebang himself. The nebulizer is this nifty little battery-powered thing so the whole nebulizer gets held up to his face, essentially - although we have a cord adapter that would allow the base of the unit to sit on the couch. I might dig that out and play with whether it is easier for him to hold it himself that way. At this point, anything that encourages independence is a good thing.

So there's that. A new wrinkle to the daily routine. And a few weeks ago we got Burke neutered. I'm so glad we did. The trainer was absolutely spot-on about the effect on his behavior. And, we still have another month or two before it really helps calm his reactivity! But already: he doesn't mark or hump anymore. That alone makes it totally worth it. We did our half-mile out and back today, along the road. Normally he is nose-down on the side of the road, sniffing away, and pees at least ten to fifteen times in a half-mile (then it calms down on the way back). Today? He peed once. Once! And he was more focused on me than on sniffing the ground. I am hoping this extends to not marking in the pet store, the only place we've had issues with marking indoors.

He still barks at all kinds of noises outside, even in the middle of the night. I am hoping that the calm provided by lack of testosterone will help him chill about that, but we'll see. Going to order Chill Out Fido!: How to Calm Your Dog on interlibrary loan, as I got a Kindle for my birthday and spent some coin on new books for it, and am a bit tapped out at the moment. Although I think we're doing most of what it recommends with the trainer. Getting him to focus on us and not external stimuli all the time. I did some off-leash work with him yesterday and it was really astonishing how distracted he is when in the woods. Going to do more of it this week with the 30-foot long line.

Training is rewarding but is taking a lot more time than I anticipated, and I get kind of stressed out when we haven't had a chance to take Burke and Jake in public together in a long time, because I worry that he will forget. We did a Home Depot run earlier this month - November 8, when Jake had clinic. That's it. Still, Burke did fantastic. He really is a natural and he seems to love to work. I am starting to anticipate whether he'll be ready to go on the plane with us in April. I would like him to accompany us to Florida. I need to start getting my ducks in a row with a letter from Jake's doc about that - and in fact, I need a physician to write a prescription for Burke for tax-related reasons. I am thinking that his DAN doc will refer us to his "home" pediatrician for that, so I probably should just buck up and make an appointment. It all takes so much time, and time management is something I am still struggling with when it comes to my writing work - and just life in general.

I've been working hard on a sensory space for Jake in the basement. Matt and I have been talking a lot about whether we'll do the addition or try to do something that meets our needs without getting a loan, perhaps building over a couple of years instead of all next spring and summer. I think it makes sense. We need to hedge our bets and not end up upside-down in our house. Our monthly outflow could be less; we could refinance our current mortgage and save quite a bit of money every month.

Thankfulness.

2010-11-25T09:20:00.001-05:00

I had to have a mini-breakdown last week - the emotion from Jake's CF hitting us in the face with this nasty bacteria in his lungs was too much. I'm thankful to have a ton of support right now: Matt and I are going to "family therapy" weekly with a woman I think is fantastic (though we may go to biweekly soon - it's a big time commitment and a week passes in an eyeblink), and I had enough flex in my schedule to have a couple of nonproductive days. Still, I'm struggling to keep up with work right now, and to define work in a way that helps us make our financial goals, yet allows me the time and energy to be a good parent to my little guy here - and he requires a lot of time and energy. Not to mention my daughter! Sometimes I think she's too self-sufficient.

Yesterday it was about fifteen degrees, but Jake wanted to pick outside for a bit. At first I sent him out with long johns, snow pants, his parka, and a hat - and made sure to put his thumbs through the holes in the fingerless fleece gloves that are built into his parka. After a while of walking around outside myself with Burke, I realized that Jake must be freezing. I went inside and got out his thick, double-layered merino wool hood. I bought four of these hoods when we first moved up here. They have one opening for the face and are made of the thickest, softest gray wool ever. As I took off his hat and tenderly pulled the hood over his head, I felt a surge of protectiveness. I need to protect him, enshroud him, allow him to do what he wants but protect him from his lack of knowledge about even his own needs. I wonder if he would just stay out until hypothermia set in, too bent on picking the plants. I know he has, before, stayed out until he's uncomfortable, then come in crying about his hands being cold. So I struggled to put glove liners on over his fingers. It takes several tries because he doesn't get the idea of spreading out his fingers and fitting one in each finger-sleeve, at all. These glove liners have pockets for handwarmer packets, and he can still pick his precious grass while wearing them. I pulled the fingerless fleece back over his hands, easing his gloved thumbs through the holes, one at a time, gently. Then I pulled his parka hood over the thick gray wool, zipping it under his chin.

He even went on the swing for a bit, pumping his legs, through the twenty-mile-an-hour gusts, just experiencing wind and sun and frozen tundra. To me, I go outside and feel the blast of wickedly cold air and get angry - it's cold; I want to run and hike; I can't because I will freeze to death. He doesn't. He just experiences it all, one moment at a time, without judgment or interpretation. A gift for which I am grateful today.

Overwhelm.

2010-11-18T10:50:00.000-05:00

I apologize for the lack of updates. I'm completely overwhelmed with life right now. Overloaded on work, overloaded with everything.

Jake went to CF clinic last week and did really well, even spitting a coughed-up chunk of mucus into a cup. Hooray! (And I'll give myself credit - the cup was sitting on the counter when I heard the telltale sound of him coughing something up, grabbed it, opened it and shoved it under his nose and commanded, "Spit it out!")

But then the chunk cultured Pseudomonas aeruginosa, the nasty bacterium that's responsible for stealing the breath of people with CF. Boo!

It was a "rare" amount and nonmucoid, so we'll hit it with inhaled antibiotics for a month and then, after close to 28 days off the antibiotics, reculture him to see if it grows back. So, more nebs for him morning and night - just a couple of minutes more thanks to the Trio, the awesome electronic nebulizer we feel blessed to have. More on the Trio here.

Training, training, training.

2010-11-06T13:48:00.000-04:00

Life is changing for Mr. Burke. We had our second training session on Monday - and boy, when I woke up Tuesday, my back felt it! As we've put more pressure on him to obey at a new level, some behaviors kicked up in the session - behaviors we haven't seen since puppyhood. Jumping up on us, mouthing our arms, and barking. Temper tantrums, really.

The method we're using is positive training. But when he was really bad and we couldn't settle him, she put him on a very short tether tied to the wall. Then I had to approach him and make him sit. This way, he had to obey and there was no way he could jump up on me and mouth. This sobered him up VERY quickly and then he got to come off the tether.

This week we got a handout with some basic things to do with Burke, things to work on. There's a lot, and I realize how far we have to go, and wish I'd started working with a professional sooner. Although he's really, really good in some ways, there are some things we did wrong with the initial training, so we're pretty much starting over (though I expect we'll move through more quickly than someone who has done no training with their pup at all). I also love the individual/private session format, because I really couldn't deal with the pace of a class right now.

Finally, neutering is on the agenda. I wanted to wait till he was grown, and then for various reasons our family has really not wanted to put Burke through getting neutered. Some rational ones, like health risks, but some not as much so, like simply wanting him to be whole and unchanged, not wanting to put him through an elective procedure, fear that his personality will change, and who knows what else. I guess I kind of saw it like every other health decision; I usually make the less-common choice. When I thought about neutering, I thought, "Why? He's a good dog and we won't let him get a dog pregnant."

The answer to why is that it will lower his reactivity, which is a big issue as far as service dog work and his potential for it, as well as just making him a better pet. If he were a super-mellow guy, it might not matter, but since he's a bit on the hyper and dominant side, hopefully the lack of testosterone will chill some of his behaviors a bit. And, we won't have to worry about him running through the electric fence if he smells a female in heat.

Next post: Jake, his IEP, his future, and everything. Sigh. I have to be in the frame of mind to write about it.

First training session.

2010-10-27T08:21:00.000-04:00

Burke and I (not Jake, yet!) went to a session with a professional trainer yesterday. She was really good, although very pushy about neutering him. She thinks it will really chill him out and that the testosterone will get in the way of getting far with training. I haven't neutered because of the negative effects on growth and health of doing it too early, plus I'm just a very "alterna" type person and you know, I research everything that's "conventional wisdom." It's a tough call because there are definite, published studies correlating even late neutering with health risks, plus there is a part of me that feels I am taking away some of his inherent dog-ness by doing it. And yet, calmer, less reactive, and more affectionate and keyed into what we want him to do, would not be a bad thing. But I question whether this will be the effect.

Anyway. Otherwise, the training session went really well. I learned that I am combining verbal command and hand signal too close together in time, so he is cueing off my body language/hand signal and not really learning the command word by itself. A timing issue. Great to have it demonstrated in person; I just can't imagine learning as much as I did yesterday from any book or DVD. She was impressed at the range of commands he knows, although she wants to start "over" from sit and down because of his lack of knowing them consistently in different settings. That's fine; I agree, and he learned them immediately there so I know he "knows" more than she thinks, but it will be good to go back to basics, fine-tune, and proof everything in multiple settings. Because of our very rural environment, I am sure I have not done enough of that.

I also got a sheet outlining "controlling resources" type things to do - something I had done when he was going through his major adolescent phase a few months ago, but have slacked off on doing for the past few months. Things like putting food down only twice a day so he cares more about it (and possibly hand feeding him meals for a while, making him work for his kibble - this morning he could care less, so maybe once he's figured out the new routine and is more eager for food); a "learn to earn" program (make him sit, lay down, etc, for treats, affection, and so on - we do this for treats but not for affection as much, I am guilty of petting him when he comes over and nudges me); walking into him when he crowds/jumps up; handling him daily. Pretty much everything except for the feeding and the "work for affection" bit we already do, but I think changing up the feeding regimen will go a long way toward reestablishing that we control all that is good in his life, and also make him a bit more food-motivated.

Jake's life is going well. We have an IEP meeting next week, but I can't even think about that until I'm done with an article that's due asap. Luckily it isn't until Thursday so I will have some time next week, plus there aren't any major changes I'm pushing for right now. He is fighting a cold and with it come a few more meltdowns. I'm so glad Katie played soccer, but equally glad it's over so that we have a bit of a break from constantly being in the car to pick her up. Jake is happy about that too. Yesterday we had to pick her up for a contact lens fitting (she is over the moon about them!) and he was not too pleased to have to get into the car immediately after getting off the school bus. I can't blame him; plus it was warm and sunny out and he wanted to be picking plants.

For years I have been prompting him to say "good morning" to the bus driver. He has never said it without me prompting. This morning, we walked onto the bus, I said, "Good morning!" brightly, and he looked her in the eye and said, "Good morning." Wow. Her jaw dropped and we smiled at each other.

He has been playing new games on his iPod Touch rather than just stimming on videos, but with that has come a new behavior: he throws it to the ground at some point. Frustration? I don't know. The iPod "goes in time out" when that happens, and we talked about "no throwing iPod, it will break," but this doesn't really make me feel good about Santa bringing an iPad. Is he ready? I think so. Yesterday he was playing the Virtuoso piano app on it and he was also doing what I thought was this little Twinkle Twinkle Little Star app, but I can't find an app that does what he was doing, so I am wondering if he was playing it on the Virtuoso piano app! I thought I peeked over his shoulder and saw something other than that app - it was a very delicate situation; he does not like to be spied on or watched. I have a feeling there is a musical genius bottled up in there (if he takes after his mother, anyway! LOL - I studied classical piano starting at four years old, until I was twenty - yes, I am a freak).

That's all for now. This mama has to get to makin' some bread (ie, money!).

New sensory toy.

2010-10-21T09:15:00.000-04:00

Thanks to a generous autism sensory grant through a nonprofit in our state, it's like Christmas early around here. Yesterday, this Vew-Do balance board arrived - this is the Zippy. The folks at Vew-Do were very helpful via email and recommended this one for Jake's needs.

With anything around here, it is very hit or miss. We've gotten some great toys that Jake shows zero interest in. So it's always a hold-your-breath moment when introducing a new toy to him. With this, I just set it up on the carpet and walked away. He was immediately interested - "skateboard" is something he's said before; despite lack of local skateboard culture (Vermont's not known for paved places!) Jake has picked up on it and has always enjoyed the concept of skateboarding. And in fact he calls a snowboard a skateboard, and really wanted to snowboard last year. (He skis, but the rest of us snowboard.)

Anyway, I snapped a pic of him on the new Vew-Do Zippy this morning before he zoomed outside to wander around in the meadow. Please ignore the crazy wires behind the TV - we just got our receiver back from warranty repair (can you believe it took almost a month??) and we haven't put everything fully back together yet, as Matt is doing some upgrades to the whole system or something. And, we're just crazy busy and life is very full, and that's my explanation for the general mess behind him!

We have a four-day weekend coming up (starting today!) and everyone is very much looking forward to a combination of relaxation and getting winter prep work done around here. I am so excited about the Zippy because we have such limited space, and this is a toy that can get set up in ten seconds flat, and can be stored in a little corner near the living room when not in use. It's really cool to have something that gives Jake some vestibular input and is so portable! We also have a Sky Chair coming through this grant program, and that may have to wait for the addition to get put up. Much more space-intensive.

Goals in progress.

2010-10-18T14:59:00.000-04:00

I feel like I've been doing really well on my goals for Jake and Burke this fall. Jake is doing wonderfully at school, in itself a great thing. I've thoroughly investigated GPS personal locator units, and we'll probably be trying one soon to see if it works here in the cell-signalless wilderness of the Northeast Kingdom. We've extended the dog fence boundary to enclose about 7 acres of our land, although Burke doesn't yet understand that the old wire boundary is no longer there. The good news is he does understand the most important part of the boundary: the end of the driveway. So there have been no more escapes to play with the neighbor dogs (and resulting car chases).

I've been reading Gregor the Overlander to Jake many nights - probably about half of them. I'm calling that a success. Some nights we're just too tired, or one of us falls asleep before the reading can happen. In the spirit of gentleness with myself, I'm not worried about that. It's the effort that counts, the consistent effort - so instead of saying, "I skipped three nights; I'm giving up," I just pick up the book the next night that works for us and read the next chapter.

I'm somewhat falling down on having him dress himself in the mornings - it's just gotten too hectic. But it's gotten hectic in part because we're being very consistent about doing his neb treatment and airway clearance. And overall, that habit is more important than his independence in dressing. So, one thing at a time. Back off one goal in pursuit of another, for now.

We have a good setup for Burke as far as vest and packs that is arriving by the end of the week, hopefully. Exciting! Have a new over-the-shoulder leash that works great for me, as I mentioned in the last post. I've been working on some more training with Burke, taking it to the next level on my own, watching videos online and trying to remember "short and often" as the rule for training, as well as "slow is fast." He's coming along, on the leash, anyway.

Life is busy, but good. We're enjoying crisp fall weather, roasted root vegetables, hot coffee and tea, and fires in the woodstove. Okay, life is bliss!

At the dentist.

2010-10-14T20:59:00.000-04:00

I am promising myself that I will drag the camera and take a pic next time! But today Jake had a dentist appointment and I asked him if he wanted Burke to come or stay in the car. He said "come." So Burke joined us for the dentist. Both boys did great. Jake petted Burke's head at one point during his appointment, and held onto him as we walked back. Otherwise Burke laid in a down stay for the appointment.

Burke is still in training, and he won't lay down if I tell him to do it - he seems too nervous in these situations to reliably obey (he will always down stay at home on command!). But once he sees that not much is going on, he spontaneously lays down and stays there. I'll take it for now, but one thing that's on my list to ask the professional trainer is how to transition that from a spontaneous good behavior to a reliable one on command. He does better with sitting.

Then I had to return some 12 slim jeans to Kohl's - Jake has grown so much he needs 12 regular! There was trying-on of 12s and 14s that we needed to do, and Burke was fantastic in the dressing room, very unobtrusive - again he just laid down, and I was able to loop his leash over a hook in the dressing room and feel confident that he was just there, lying down and behaving. And while we were walking, I used my new over-the-shoulder leash most of the time. I didn't even have to hold onto Burke. I could just walk - and there, just a bit behind me and to my left, was Jake holding onto Burke's handle and with a waist tether, walking calmly. It felt like a bit of a miracle!

I told Matt about it tonight; he noticed the other day how calm Jake was when holding onto Burke after our walk through the woods at K's soccer game. He is coming around and really supportive of this whole endeavor, I feel. It's taken a big leap of faith for both of us, I think. For me it's taken courage - to feel confident in Burke's ability and just to be able to walk in somewhere like the dentist's office and say, hey, this is a relationship that benefits Jake, and Burke needs to be here. Burke can be such a goofy, typical adolescent puppy at home, but he really takes his job seriously and seems to appreciate having something important to do. It's kind of crazy, but I really have come to admire him as a dog. He has this intuition about what he is supposed to do with Jake and he just - well, he just does it. He knows when we're in a pet store and he can be goofy and a little hyper and sniff things. And when we're in a clothing store, or the pharmacy, or the dentist's office, he behaves perfectly - absolutely perfectly. I wish I could say it's due to diligent training on my part, but I think it's something else. Bonding with Jake, poodle intuition, the desire to work - I don't know what, maybe all of that.

So, we move forward. I have emails to several trainers and will begin some professional training sessions within a week or two. Looking into a funding stream for this, but it may not pan out. I have gone from feeling like I should have just gone the route of getting a trained dog from a program, to feeling justified in asking friends and family to contribute to training Burke if they feel moved to do so - because we've come this far, and he is a very fine dog, and he and Jake have bonded. Why I feel embarrassed to be DIYing it yet again is hard for me to understand. I guess it's that - Lauren always has to make things hard! Can't just do it the usual way. I had to sort of back into this service dog thing. I don't know that I could have taken it seriously and gone into soliciting donations for a program-trained dog without knowing whether Jake would take to a dog, or whether it would be like his Dynavox - a very expensive paperweight that doesn't serve his needs. So that was it. I needed to know that Jake wanted this and that he could benefit from it. And now I know that he does want it and he absolutely can and does benefit from his relationship with Burke - in public as well as at home.

Friend Burke on Facebook.

2010-10-11T07:40:00.000-04:00

Burke on Facebook

Just a normal kid.

2010-10-09T10:00:00.000-04:00

I realized this morning that I never posted here about the corn maze field trip. It was utterly uneventful, typical, ordinary - just plain old fantastic. I got to see firsthand how Jake's classmates treat him, and I was floored. They're terrific with him. They were completely genuine and natural, and included him without added fuss or bother. Yet they made that effort to involve him in whatever they were doing - "come on, Jake, do you want to steer the boat?" or "Jake, wait up for us!" Just like they'd say to each other. And they were exquisitely sensitive to his unique needs because of his autism. When Jake wouldn't stand near the "Bell of Frustration" (there's a Bell of Success for when you've solved the maze, but this one gets a lot more action), one of the boys said, "The sound bothers Jake's ears! Don't ring it right now! Come on over, Jake, let's take a picture!"

The other two moms and I hung back - mostly because wow, those boys can move. They literally ran through the maze for the first half-hour or so. I had to hold back the tears that kept welling up as I saw my child, simply being himself, yet being completely with other kids his age. Looking typical - normal - unusual - not different. It was amazing, totally and completely stunningly beautiful. I saved my tears for when I got home. I looked at the photos and just cried.

More Photos of the Field Trip

Can't read my, can't read my, no you can't read my....Poodle Face!

2010-10-07T07:39:00.000-04:00

Just a closeup of Burke. This is actually on his service dog ID card that I carry with my in case of access issues (but please note that legally, service dogs do not require ID cards, and showing one can actually lead to that establishment expecting all dogs to have them - I'm not sure I'll ever use it, but I feel better having it).

We joke around about his poodle face. With British field lab, not blocky-headed show lab, in his genetics, his face is longer and narrower than most labradoodles. I get a lot of comments about how beautiful he is when we are out and about. Yesterday the sales clerk at JCPenney's was in love with him! In the pic his beard is shorter than usual because of the quilling he endured last month: hundreds of tiny baby porcupine quills were in his face. He must have gotten a good mouthful of porkie because most of them were inside his mouth. We're still pulling out bits of quill that are working their way through his lips and popping out on his snout. Poor baby!

Friends.

2010-09-24T08:46:00.000-04:00

Talked to Jake's teacher this morning, because we're going to the local (but make no mistake, massive!) corn maze today as part of a field trip. She put him with several boys who she says are his "new best pals." He's been playing with them at recess; they've been helping him with share; basically, they are taking a huge interest in interacting with them and he has responded in kind. She wanted to make sure it was okay that J's para would be with another group - there are two other parents in my group, and no parents of girls coming, so she's needed elsewhere, plus she figured three parents for five boys would be plenty. I said yes, that was fine. He's riding the bus there, too, and I'll meet them at the maze, because I feel like that's an important part of socializing, and he loves the bus in general. Better if I'm not on it so he can sit with his buddies and not worry about me.

Having friends is a huge thing. This is brand-new. He's had connections with other kids, but not a consistent group who actually includes him in play at recess and who considers him a buddy. I'm nearly in tears at the thought.

Last night we read two more chapters of Gregor the Overlander, cuddling in bed. He listened intently. At the end, I said, "Do you like this book?" and he replied, "Like book." If he doesn't agree, he just says nothing. So he likes the book. I'm really glad, and so thrilled to have a new routine that brings something positive to his life. Tomorrow, Matt and I discuss the loft construction, and I will most likely give the carpenter a call and tell him it's a go. Three or four days of construction, he said - I want to get it done as soon as humanly possible so I can get started setting up his room, and so Katie can spread out. Exciting!

Progress. Yes?

2010-09-23T17:37:00.001-04:00

Can you spot the child?

Burke watching his boy intently.

It's the fall foliage version of "Where's Jacob?" Complete with new LL Bean fleece sweatshirt in Sail Orange, which he is actually (sort of?) keeping on his body. He seems to like hoods, wearing them up, cocooning himself a bit. This sweatshirt is super soft and lined in a very plush fur fleece. My thought process: he needs a fall jacket; this will be a great color because I'll be able to see where he is against our vast backdrop of beauty in a flash. One flaw in my thinking: there are a lot of orange leaves out there that are not unlike Sail Orange in their hue. Still, it's an improvement over his regular t-shirts, which tend toward browns and greens, with only the occasional red. And, it's bear season. Should he actually wander again, it would be good for him to be wearing orange.

We've been doing work with Burke and Jake in public, and I've spent countless hours researching service dog vests and harnesses for Burke to wear. I've read, read, talked to parents, and read some more, and made peace with tethering Jake to Burke for now - using a hands-free leash system. In fact, I think that getting an over-the-shoulder leash for me as well also makes sense. Both boy and dog did spectacularly well at the bookstore, pet store, and department store yesterday. We were all exhausted afterward, though.

So within a couple of weeks we'll have a snazzy new vest with detachable backpacks so Burke can begin to carry Jake's enzyme capsules and supplies as well as juice for him, when needed. And we'll have a new, more Jake-proof tethering system, and hopefully a leather leash for me to wear that will leave my hands free (helpful in checkout!). I've dug out my Teamwork books and DVDs and begun refreshing basic obedience with Burke. Luckily he is showing me he can totally sit, lay down, and stay - today just he and I went into the pharmacy and I did a little off-leash stay in a quiet aisle. He was fabulous. I need to get a long lead for recall off-leash outdoors, and need to practice commands out in our yard, because he seems to think no training applies if he's outside and off-leash.

I'm going with the "short and often" theory for training sessions, and trying to remember that "slow is fast" as my Teamwork book tells me. Little chunks at a time, and we'll get there. Burke's biggest issues are that he wants to greet everyone he meets, and he can't sit and get petted nicely - he gets all excited. Not terrible, just a little boisterous. Children are especially tough. And other dogs - a young lab puppy came into the pet store and I just was not prepared for Burke's reaction. The other dog was manically trying to get to Burke, and he was so excited he started barking. So we have work to do. We also need to refine his heel, but he's great at it in stores. On our road on walks, not so much. He pulls or forges ahead even with the headcollar.

I'm reading Gregor the Overlander to Jake right now, a chapter or two a night. He seems to enjoy it. School is a bright spot, it seems - from the notes I'm getting, anyway. He's doing lots of good work there. He's making strides, and I just want to capitalize on it however I can. He loves walking with Burke and holding the second leash, which is really wonderful.

I have a few goals I'm working on with Jake, basically. Besides the obvious, keeping him from wandering, which in itself is a full-time task and then some:

Leave enough time for him to dress himself as much as he can in the mornings.
Work with Burke and Jake in public.
Encourage boy and dog to bond.
Keep up with his nebulizer treatments and airway clearance for CF, building up the amount of airway clearance rounds we're doing (per his doc).
Read him a chapter or two of a middle grade novel each night.
When his room is done (we're extending our loft and his room will be a good bit bigger as will K's), set it up with a few high-preference toys, a sky chair, his mini tramp, and his beanbag chair.
After that, introduce the idea of sleeping in his own bed, maybe working on transitioning into it during the Christmas break when we can all sleep in if this is an exhausting process.

I think these are pretty good goals for the rest of this year. If we can manage them, I'll feel like we're making some real progress. Even if half of them actually happen, it will be a step forward.

STOP. Come back. Need to stay close.

2010-09-16T12:16:00.000-04:00

This is Jake, doing what he loves to do. He is at the edge of several mowed acres around the house. He walks, he picks the tops of grasses and plants, rubbing them between his fingers, smelling them, looking at them, shredding them. And then he moves on. Lather, rinse, repeat - for as long as you can imagine (or possibly longer - hours, days, weeks).

And this is the new STOP sign. Now, I'm happy letting him "stim" with picking the wild plants. He used to be pretty awful about picking my flowers, but we talked about that and he's mostly stopped. Now that it's chilly, he doesn't strip off his boxers or shorts or swim trunks (of which I need to track down several pairs that still live in the woods somewhere), so it doesn't look all that inappropriate. But it's this stim that has led to the wandering. And he can't wander anymore.

The wandering looks like this: he's outside in shorts, he's barefoot because he prefers it that way, the sun is out and it's warm. He picks and works his way down the hill past the stop sign (or any other number of pathways down the hill - we have many stop signs!) and then to the brook at the bottom. He walks along the brook; it's almost dry thanks to a very dry summer. We used to let him go down to the bottom of the hill because he mostly stayed there at one or two spots near the brook. But in the past few weeks, he started walking up or down the brook. It's very difficult to find him when he does this, and the couple of times he's come back on his own, I estimate he was gone 2-3 hours. It's hard to let him come back on his own, but I did it a couple of times to see how long he'd be gone.

But then we found out that he was emerging up the mountain at neighbors' houses, and one neighbor says he "nearly ran him over," although I'm still trying to figure out exactly how that might have happened. I think the neighbors' freaking out has more to do with Jake's nakedness when they found him than anything else, but there is definitely some concern about danger in the woods. I had that concern too, lest I seem like a neglectful parent. This is a very isolated, rural area, and the danger is that a bear, coyotes, or the mythical mountain lion that may or may not exist in Vermont, might attack him - and he would not have any clue that being five feet from a mother bear and cub would be dangerous, what to do, etc. Now, the actual statistical likelihood that a wild animal would attack him? Not that big. More likely? That my neighbor would run him over. Or my fear, that he'd hit his head, or trip and fall (which he's done about three times in ten years, total - I'm serious), get injured and be unable to call for help and we would not be able to find him. Or that he'd get lost and darkness would fall and then I really would worry about something eating him or that he'd be terrified and hysterical (I know I certainly would be).

Anyway, so the wandering had to be put to a stop. Literally. Stop signs now ring our mowed acreage. I've been on the phone with makers of GPS trackers for backup, but they all require cell signal for triangulation, and we don't have a cell signal up here. The stop signs and accompanying social story were the brainchild of our school team's autism consultant, who is fabulous. It's worked, but some days he is still hell bent on breaking out, which requires basically that I sit on the deck and watch him constantly, calling his name and saying, "Good job staying close!" every two minutes. Or when I go to the bathroom and he's inevitably bolted down the hill right past that stop sign, I say, "Stop! Come back," (he usually finishes for me, "RIGHT NOW!") "you need to stay close." He will, reluctantly, trudge back up the hill.

Burke has actually done quite well alerting us to when Jake heads down to the brook. Even though he was inside the other day, he could hear his vocalizing getting fainter, because he started barking. Sure enough, Jake had gone down to the brook. I think it's because Burke thinks his electric fence boundary doesn't apply when Jake does this, so he gets excited about the idea of following him and having some freedom. (And, I've found out, he mirrors Jake so much that once Jake's out of the boundary, Burke will run off for some puppy playtime with our neighbors' dogs, or go swim in the nearby pond.)

We were going to extend Burke's electric fence boundary (the fence has been mostly off due to needing some splicing, and he's still mostly respected it) but we're now thinking about keeping it where it is, and putting the little white and orange boundary flags back up. This way, we reinforce for both dog and boy where the boundary is. I think that having Jake help me put the flags up will be key, and we can use them in the social story. Because it's tough keeping those STOP signs up and even though they're laminated, dry. They're hard to see and the wind whips them off the trees.

So, this is life with Jake for now. He's doing really well at school and making all kinds of gains. Home has been tough because of the wandering, but most days now he is doing okay with it and isn't in bolting mode. M and K have been getting home very late since K's playing soccer, so it's all me and the boy till 7pm. Doesn't make getting chores done inside (or out for that matter!) very easy, but I've decided to look at the silver lining. I'm going to work on afternoon training with Jake and Burke, tethering Jake to Burke and having him practice holding a second leash, and doing obedience work together.

I've also set a couple of other small goals for Jake. I think I sometimes overdo goals, and get overwhelmed and then stop doing any of it. So besides keeping him from bolting and walking him and Burke in the afternoons as much as I can, I want to do two things: make time for him to dress himself in the mornings (we're often so rushed that I end up throwing his clothes on him, and he needs to practice this) and reading him some middle-grade novels for about 20 minutes each night. I think I am going to start with Suzanne Collins' Gregor: The Underland Chronicles, because I haven't read them and I loved her Hunger Games trilogy. And they have a male protagonist. They seem like they might be something Jake will like. We'll see how it goes.

Something really cool happened yesterday with Jake and Burke.

2010-09-04T09:08:00.002-04:00

Part of our intention with Burke when we got him was to train him as a service animal for Jake. I didn't know exactly what form this would take at first, or if we'd need to train him for public access at all - or if just having a good family dog that Jake could interact with would be enough. And they love each other madly and have these great play sessions at home, which in itself is incredible.

Lately Burke has taken to following Jake down to our brook and staying close to him - which is great, because Jake has taken to wandering too far at times. We are pursuing some training for Burke in search and rescue as well as alerting when Jake goes too far, as service dog tasks.

But another task that I think Burke can do is to keep Jake regulated and from jumping and running and flapping in the aisles when we are in stores. Stores - supermarket, clothing, whatever - have been extremely hard for Jake. Clothing is worst because of the formaldehyde smell, but the stimulation and fluorescents in the supermarket is pretty bad too. While I shop, Jake typically runs up and down the aisles, making an "eeeeeee" sound and flapping. It's tough; I'm constantly calling him back to me and he has about 20 minutes before he starts crying or getting angry and frustrated with everything and needs to leave.

So when Burke was around 6m old I took Jake into Kohl's with Burke - Jake held one leash attached to Burke's service dog in training vest and I held the other. Even as a puppy, Burke seemed to know instinctively how to behave in the store and was a model of good behavior. His biggest issue was wanting to lunge toward people to greet them - he loves people and has never met a stranger.

Since Burke's adolescent antics stage I haven't tried public access again. It takes a lot of work and I just haven't been confident in his behavior. But in the past few weeks I've been working with him amid some distractions, and felt he could handle it. We did Big Lots first for a short trip/trial with Burke. He did awesome!!!! Jake however freaked out and ended up waiting in the car with Katie while I finished paying.

Then we went to the supermarket. With Burke. And Jake. Katie and I took turns handling Burke - with the headcollar. Jake held another leash attached to Burke's vest. We were in there for over an hour - back to school stockup.

Well, Jake calmly held Burke's leash the entire time. I think he dropped it like twice and picked it right back up when I reminded him. It's 6 feet long and I am looking to try 2 and 4 feet as well as one of those buddy leashes that we could put around Jake's waist, although I think holding the leash itself is therapeutic for Jake. I could not believe the difference in his behavior. No flapping. No running up and down the aisles. NO VOCALIZING. He just walked next to Burke, calmly, the entire shopping trip. He was calm in the checkout line. He was calm all the way to the car. It was incredible.

So I really need to pursue this. One of my fall goals was to take classes with Burke and Jake, group obedience, at a local training school (just for obedience/agility). I need to call the trainer and talk with her about options for Burke and how to work with Jake. Jake likes to repeat commands to Burke when I say them, so getting him to work toward being Burke's handler may even be a possibility.

Just had to share. I'm all excited. I never thought the supermarket could go that smoothly. I love being able to take Jake places he can't usually handle. Burke was a model service dog, he was spontaneously sitting every time I stopped moving by the end of the trip, and his only weakness was children, LOL. He would wag his tail and move slightly toward them whenever he saw them. But he now won't lunge toward adults and he isn't at all bouncy or hyper or anything. He tried to sniff snout-level food once or twice but stopped after we corrected him and didn't do it again. He looked darn close to a completely trained dog, not even a dog in training. He will walk at a complete heel without being told to. He is such a good boy!!! Three months ago I would have never imagined this happening.

Snow for dinner!

2010-04-29T08:30:00.000-04:00

Jake's been doing great lately, although he has an infrequent cough that gives my heart a little flutter whenever I hear it. On May 11 we have his annual labwork, including glucose tolerance test (for which we are substituting him downing 2 cans of Coke at 9 am for that icky orange or grape stuff he had to drink last year - and didn't quite finish), chest X-ray (details of how we will get this child to stand still are TBD and on my list to investigate/bring up), throat culture (cooperation has been difficult as of late, and this is an important component of his care), and, to top it all off - after CF clinic we head to the optometrist for an eye exam! Yippee!

We just got back from visiting family in Florida, and Jake's having a bit of the withies from the sun, sand and swimming. He absolutely loved swimming in the ocean, and once I said, "We're swimming in the ocean!" it became his little mantra, "Swimming - in the OCEAN!" He watched Katie bodysurfing and tried it himself. Once when completely bowled over by a wave, he stood up and in the cutest, most natural voice ever, said, "Oh my GAHD!" It was completely adorable.

He's a little brown berry now, but so sad - especially since we came back to a huge whopper of a snowstorm - 14 inches and then some. He kept tasting snowflakes at school and saying, "Oh no, it's snowing!" and "Snow for dinner!" Then at home he was all about, "No! Snow!"

That's another cute development of late: he loves to say, at the top of his lungs, "No no no no no no no!" in various inflections and rhythm patterns. I have taken to mimicking the inflection and pattern and responding with "Yes yes yes yes yes yes yes!" and he just loves it. To the point that he'll go back and forth like that for hours if I could stand it. Last night it was adorable until I could take no more.

Overall? He's thriving. There are a few little things that I need to iron out - he has had a slight increase in meltdowns, I need to order a $100 bottle of Lyme herbal tincture (ouch, and I wanted to make it myself, but have had a hard time lately finding any time to do anything!) and I need to restart probiotics. But he's a sweet, healthy little guy who's loving life for the most part!

Gentle with myself.

2010-04-06T08:26:00.001-04:00

I'm not a floortime mom. I'm not a crusader who has pursued every biomedical intervention for my son. I'm not an ABA mom who has implemented a fifty-hour-a-week program and brought my son forward by leaps and bounds. I'm not even an uber-organized mom who has visual schedules in every corner of the house, all the toys labeled with Boardmaker icons, and a structured schedule for my son.

I'm not any of those moms. For many years, I've thought I should be a mom like that - like any of those, someone who goes to extraordinary means for her children. Many who look at me from outside would say I am: that I've moved to a place where Jake gets great schooling, that I have advocated strongly for him, that I have researched alternative treatments for cystic fibrosis and autism and applied what made sense to me. And yet, when I compare myself to these imaginary mothers in my head, or various virtual (and virtuous) mothers in the blogosphere, I come up woefully short.

So I'm trying something new. I'm not comparing. I'm embracing all of who I am, and I'm somewhat of a lazy mother. When I read in the La Leche League book that "benign neglect" was a healthy strategy for childrearing, I embraced it wholeheartedly. (My heart did a little joyous leap! Not paying attention to my children 24/7 is a good thing! Woo-hoo!) Jake wants to roam naked outside on warm sunny days and pick twigs off little trees and bushes on our 25 au naturale acres? Fine with me. Come in for a bath and dinner and let me smear a little sunscreen on you if you're burning. Is it stimmy behavior? Should I stop it? Maybe. Maybe not. Who knows for sure?

I go to therapy weekly now, where I grapple with the questions: Is that really true? How can I absolutely know that it's true? Whenever I'm faced with a belief that is causing my angst and suffering in my life, I ask myself those questions. Is that really true? How can I absolutely know that it's true? Most of the time? With just a little bit of introspection, I can find ways that it isn't true.

I should be more involved in actively parenting my children. Is that really true? How can I absolutely know that it's true? If I were a better mother, Jake would be less autistic. Is that really true? How can I absolutely know that it's true? If I had pursued biomedical interventions earlier, more aggressively, he'd be less autistic. Is that really true? How can I absolutely know that it's true? And how about this one: Jake would have a better life if his autism symptoms were improved or more mild. Is that really true? How can I absolutely know that it's true?

There is more to the type of therapy I'm doing than just questioning beliefs, and if you want to read about it you can go to the webpage of the woman whose idea it was to ask these questions in this way. But often, those first two questions are enough for me to let a belief loose, to pry it free of my mind a little bit, and give it the opportunity to float away. Sometimes the belief sticks again, and other times it dissolves into the ether.

I'm almost there, when it comes to the type of mother I think I "should" be. Today's a good day, when I can say, "That's bullshit. Why do I hold myself up to others and compare at all? What's productive about that?" Today I'm seeing clearly how much I punish myself for imagined transgressions, how self-flagellation has become something I see as virtuous, something I deserve. I'm loosing these ideas from their moorings and letting them float, today.

Spring is good.

2010-03-21T20:24:00.000-04:00

Jake has been doing really well. Life is busy, so I haven't updated this blog in far too long. But he's really zooming right along with language development. His new cute phrase is, "Maybe it's time for a drink," or if he's really feeling feisty, "Maybe it's time for a dri-i-i-i-i-nk." He will also say "want some FOOD." This is all new, because before he could only ask for specific things, like "I want some apple juice," or "I want chicken." I do think it's partly that he is learning about categories and applying them more broadly - food and drink versus the specific, chicken and juice.

He is also way into his iPod touch, his big Christmas present and honestly the best present ever. I put all his DVDs on it and he loves to cycle between them. He is an expert navigator. First it was in a speaker case, then we went to headphones, and now he likes to have it in its Otterbox Defender and just put it to his ear like a tiny boom box. It's fairly amusing.

On the school front, his autism-specific program is being dismantled. I'm disappointed. Team meeting is Tuesday. I need to get my advocate face on. But this mama is tired. Tired, disappointed, and utterly disillusioned.

The service dog in training serves.

2010-02-16T17:08:00.001-05:00

Today Jake had CF clinic. Burke stayed in the car - I don't think we're quite there yet as far as taking him in with us.

It started with him getting his arms and legs held while he was on my lap so they could attempt to do a throat culture. It didn't go well. He ended up biting the swab clear through, and was then quite agitated for a while after. The GI meant well, but yammering at him while he is trying to re-regulate didn't help at all. But eventually he calmed down. We found out that his hands going white during skiing is not CF-related, but probably Raynaud's Syndrome. My mom and I both have it, so no huge surprise, but still. It's sad when the medical practitioners pity you. His weight was excellent and he has grown taller; the GI says that height will stall when there isn't enough weight gain which is what happened last time. I'm glad they keep a close eye on it but that freaks me right out.

Then we're considering starting Singulair again because it seems he's been super congested all the time and has an increase in irritated-type coughing. The pulmonologist thinks he has allergies. In May he will get a RAST panel done. As well as a chest X-ray, blood drawn for annual labs and a study of liver disease in kids with CF (and alpha-1), a glucose tolerance test that involves him drinking a ton of really yucky orange liquid, and oh yeah - an eye exam a few hours later. Whew. Matt is taking off to go with me and I'm really glad cause that is a lot to do alone. I will make social stories for it all, but am waiting for details on how they will do the X-ray. I am tired just thinking about it.

After clinic we went to lunch at the Co-op Store, where he housed a good amount of Boar's Head roast beef, his favorite, and a few sips of apple juice. Again, I left Burke in the car. I haven't been able to handle both training Burke in public and dealing with Jake. But my plan was to head to Kohl's afterward and give it a shot.

So we did. I put a short "handle" type loop of webbing on the second loop on Burke's harness, then attached the primary leash to the super-strong metal loop. I held the leash and Jake held the handle. It was a little crazy at first. Remember Burke is eight months old. Whenever we enter a public place he rears up on his hind legs and sniffs and just is like, "I cannot believe the smells and excitement of this place!" So we go through a couple of minutes of him sitting and just sniffing and getting acclimated. But pretty soon he's calm, so we practice walking to the back of the store.

I was so nervous, but it went really well. What was most incredible was how Jake behaved. Last time we walked into a Kohl's he had to ride in the cart. He's getting too big, and his legs got stuck. I couldn't push it because he's just too heavy. So I pulled him out, and he flopped on the floor and wouldn't get up and we had to leave with him screaming and everyone staring. (He is 9 and a half and just too mature-looking for anyone to think it's a toddler or young child having a tantrum.)

Today, even after all the trauma of the clinic throat culture attempt (I forgot to say the pulmo got a decent swab later), he walked very calmly holding onto Burke's handle. Burke walked between us. Didn't lunge, didn't pull. Sat and waited, for the most part, while Jake spent twenty minutes pushing buttons on the many sing-a-long books on the display - still his favorite. (I told him he got to pick a toy if he got the throat culture done. Was supposed to be if he cooperated, but he did the second time so I figured he got the toy.) Jake was very appropriate and regulated while looking at the books. He would normally flap, bend over, jump around and run away and back again with excitement. He didn't. He looked freakin' normal, like any other kid.

Then I had to look at comforters. Hey, I had Kohl's cash and a 30% off coupon and I almost never get out. And, as good as he is, Burke chewed holes in Jake's comforter and duvet cover. The goodness continued as boy, dog, and mom walked calmly down the wide aisles, and even through the little ones. I admit I didn't push going too close to people, but when they did come by Burke did very well. This is his biggest challenge. He gets so excited and wants to meet and greet everyone (and jump up on them and lick them). I keep reminding myself that he's only eight months old. And I know this sounds nutty, but at one point a woman was about six feet away browsing and I just sat him and rubbed his chest and told him that I knew how excited he was, but he couldn't meet everybody in a store like this, that his job was helping Jacob and part of that was being very calm and not meeting people right now.

He actually seemed to get it. I don't know. I know he doesn't understand English, but I wonder if the poodle-intuition is that good, that he got the gist of what I was saying. We circled the store a few times for good measure and then checked out. He did great through it all. So did Jake! I was amazed.

On the way home he sat snuggled so close to Jake, his eyes closing as he fell asleep. Jake tolerated it, even seemed to like it. Then Burke just curled up with his body on Jake's leg. Again, Jake seemed to more than tolerate it.

Pretty cool stuff. I have been so wishy-washy about this whole process, but it really got me excited and motivated. I know I just need to push forward with heel, sit-stay and down-stay with distractions. He's so easily trainable and has such a great disposition. And most importantly, Jake seems to want him to be with him in the store and it regulates him.

Training the puppy.

2010-02-11T18:30:00.000-05:00

Burke just turned eight months old, and I've been moving into more serious training. We need to work on stays and heeling; he's really good with sit and down. And, because he threw up in the car as a puppy, I really need to work on loading and unloading from the car. I don't care particularly, if I have to pick him up by the handle on his harness (it's a Webmaster Harness meant for that) and load him, but I'm pretty sure that if I want him to be registered/certified as a service dog, he'll need to learn how to do that all himself.

We had a gathering on Sunday though, and people were very impressed with both Jake and Burke's complementary personalities and interactions, and Burke's manners for a puppy. The more people came, the calmer he got, until finally with sixteen adults packed into our tiny living room/kitchen, he fell contentedly asleep.

I just finished gluing the "service dog" and "in training" patches on the harness. I've been taking him to stores, but will feel more confident with the patches in place. We haven't had any trouble except at Ocean State Job Lots where the cashier said we had to have an identification card. I said we didn't, but she made me stand there and wait while she got the manager. So I just left rather disgusted with the place. I am also going to either buy or print up some cards with the law on them like I've seen online, so that people will be educated and so I can back up what I'm saying. In Vermont service dogs in training have the same rights as full service dogs, and I may add the Vermont statute so that's clear.

Mostly he does great in stores, but he's less likely to sit on command, and he is prone to rearing up onto his hind legs a bit and sniffing at people if they come too close. We're working on it all. I think he just needs more exposure. We also find that sitting outside the entrance to somewhere, or just inside the entrance, for three to four minutes before entering, helps him to acclimate and calm down.

Today at Rite Aid I was surprised because there were tons of teddy bears around (Valentine's Day) and he was so excited by them! I wasn't ready for that. He loves him some stuffed animals. We got him one of his own later and he now has a new chewy. He's so gentle with chewing things; he doesn't tear anything up at all. Except for comforters/blankets...he has a bad humping habit and has chewed a couple of holes in the comforters as well. I think it is time to neuter!

I am also considering what type of harness would work best for Jake in public places, and wondering about a traditional guide dog for the blind type - a leather harness that is sturdy and rigid and he can really hang onto. I'm not sure yet. I feel it's a balance between looking more "normal" and casual and Jake needing the boundary and guidance of a handle that doesn't flop against the dog's back when he lets go. Just looking at options right now. For the moment the Webmaster works really well, and we can have two leads attached to it - a shorter one for Jake to hold and a longer one for me.

But for the most part, I am training Burke in public without Jake, because Jake is hard enough to deal with in public without throwing the in-training dog into the mix. This is why, I think, the person at Ocean State Job Lots didn't believe Burke was a service dog - it was just me and Katie and neither of us "look" disabled. Sad thing is, Jake does, even though some kids with autism don't. He's flappy, jumpy and vocal enough that you can figure it out quickly.

That's the Burke update. I'll have to post about Jake soon. And I promise pics of Burke in his service dog harness soon, too!

Mourning loss.

2010-01-24T08:09:00.000-05:00

So, we had to euthanize our elderly lab mix doggie, Dana, last week. Jacob was there and witnessed it, although from a distance - he was on the couch while Matt, Katie and I held Dana and the vet gave her the injection. (We were lucky enough to have her put down at home.) He didn't show any interest in saying goodbye to her body or anything, although in hindsight I wonder if I should have asked him if he wanted to. But I think he needed to process it in his own way.

This week at school he's burst into tears several times, and just cried brokenheartedly and even sad, "I'm sad." The crying lasted ten minutes for the first time, less than that the other two times. Then last night at home he started crying in this horribly sad, mournful way. I asked, holding up one hand for each answer, "Is this about Dana? Or something else?" He hit the hand that was for Dana.

Poor sweet boy. I held him and rocked him and told him how wonderful Dana was, how connected they were and how he always knew when she had to come in or go out and opened the door for her, and what a special job that was. I said she was at peace now, and (here is where it is difficult not to have a well-defined faith about the afterlife!) maybe she would come back as a dog again, or a beautiful, wise human being, or a cat - Katie was there and agreed that Dana was so catlike, she might very well enjoy a lifetime as one. Or that maybe she was taking a break from incarnating and romping around somewhere eating tons of raw chicken and loping down a trail in the woods.

I said if you got very quiet and still and listened, you could still feel Dana's spirit very nearby. He got very still and quiet, and seemed to calm a bit. I told him it was okay to cry and feel sad, and that it was good to feel the feelings. That we were all sad and brokenhearted over losing Dana. She was a very, very special dog in our lives.

I'm just so glad that emotionally he is so healthy and connected. It's a gift. There is so much that can transcend language.

Shred shred shred.

2010-01-10T16:13:00.000-05:00

Jake likes to shred paper, or pull broom straws out of the broom and pull and twist them with his fingers. Right now I am letting him do this with the broom because it's better than having rafts of paper bits all over my floor. I admit that I don't sweep them up or vacuum till he goes to bed, or sometimes first thing in the morning after the kids get on the bus. I would like this behavior to stop, but nothing I have tried to substitute with seems to satisfy the same sensory need.

He will help me sweep, although he doesn't quite get how to sweep the stuff into a pile. I'm trying to teach him. He will readily hold the dustpan for me and then dump the paper into the garbage pail. He doesn't seem anything but slightly amused about the entire situation.

In other news, he has started physical therapy (PT) and is working on riding a bike. Which reminds me, I have to find his (partly dog-chewed) bike helmet for school, and write a note about using his bicycle. His para asked if I wanted to send it in, but it's the same size as the one they are using - 16 inch. I think he's ready for a 20 inch. Spring, where are you? (Don't answer that.)

Sense of humor.

2010-01-04T07:51:00.000-05:00

Jake has a great sense of humor, and it's so sweet when he shows it. We had a great Christmas/New Year's break at home, and he was very verbal and talkative the whole time. He has also started cracking jokes. The other day Matt bought the little round Cheetos - he calls them "Cheezy Poofs" a la South Park. So Jake started saying, "I want Cheezy Poo-poo!" with the cutest inflection. He's very clear that he's saying it to get a reaction. I'd say, "They're Cheezy PooFFFFFFs," and do this big exaggerated "ffffff" sound. "Cheezy....Poo-poo!" he'd reply, drawing it out so that I might think he was about to put the "f" on the end.

He has a big thing for fart sounds, too. Making them and cracking up. He is very much a boy, no?

We went to our friends' house on New Year's - they are an older couple whose kids are grown. He really engaged them, interacting and playing with both of them, hugging the guy, giggling, running back and forth between kitchen and living room. We're still having a lot of issues with him picking and shredding plants, and now that it is winter, people's houseplants are in danger when we go visit. We successfully redirected him to eating and only a little bit of rolling/shredding bread, but when we left, they definitely had some vacuuming to do.

Matt is reading several books on Zen meditation and loving-kindness, in preparation for a graduate course he's taking this weekend (a three-day intensive retreat in the White Mountains). I'm planning to read them as well. I feel like I need every bit of strength and patience for the boy, sometimes. As much as I love him, as funny, sweet and loving as he is, break with him home 24/7 was also, frankly, exhausting.

I will be back to a regular posting schedule. I don't know what happened to December. It just blipped by before I even noticed!

IEP Time.

2009-11-18T08:16:00.000-05:00

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.

2009-11-11T07:30:00.000-05:00

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.

2009-11-02T09:51:00.001-05:00

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.

2009-10-27T07:39:00.000-04:00

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.

2009-10-13T07:54:00.000-04:00

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!

2009-10-02T09:50:00.000-04:00

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?

2009-09-29T08:19:00.000-04:00

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.