Things change constantly.

So much has happened in the past several months with Jake. I'm not sure where to start. And I have huge issues with sharing much about him online, so I'm always tortured about what to post here. I've been feeling ambivalent about continuing this blog, so I apologize for how scattered it often is.

The iPad. We're coming up on a year of having it. It's been a huge boon for Jake in so many ways. We use Pictello to create social stories for everything from hanging up the towels in the bathroom to not shredding paper, and to share experiences with school. For example, we went to an awesome new indoor water park and I snapped some photos with my iPhone. Thanks to Photo Stream, they were on the iPad immediately, and I made up a little book in Pictello in less than five minutes. Emailed the code to his para, and he got to share about the trip at school. He also likes to explore the photos on his own. He will navigate through his Photo Stream to look at things that interest him, too, and to request things (I've taken photos for his communication app with the iPhone or iPad, so they're all there in the stream). He uses Proloquo2Go when prompted, if he is dysregulated and having a hard time telling us what's going on.

YouTube has also been a powerful tool. Jake loves drums, so I found some videos of someone playing a djembe - the clips get right into the rhythm, right into the playing, no talking. He goes back to the clips over and over again to watch. Then plays his djembe. It's really neat.

Those have been the most powerful parts of the iPad for him. And yes, he uses it to watch his favorite videos. A lot. I let him self-regulate this, and it's one of very few leisure activities for him. I've heard people criticize the iPad for being just a glorified babysitter, but you know what? I think most people with a challenging kid on the spectrum would agree that anything that occupies their child that isn't destructive is a welcome respite from the 24/7 care we give. I'm okay with him using it to watch videos.

We're working on branching him out into different apps. He has used many of them with prompting and in structured sessions with me, but not on his own. So, eventually.

His difficult behaviors - dumping stuff (including garbage) into piles, flushing inappropriate things, and shredding paper - have abated somewhat. We had our school team's autism consultant come to the house several times to help us put more structure into his world. She helped with social stories about not touching other people's things, and we gave him a "shred zone" where the behavior was okay. We're using a visual schedule and we've organized his toys and pared them down. The next step is working on keeping the room clean and helping him learn to put his toys away after he's done playing. Interestingly, the shred zone led to an almost complete disappearance of the shredding after about a month. Just on its own. So that's pretty neat.

We've still had mysterious, out-of-the-blue meltdowns - inconsolable crying, inappropriate laughing. We saw a neurologist in January and he recommended a video EEG. He'll be admitted to the pediatric floor in the afternoon, we'll somehow glue electrodes to his scalp, then wrap it all up in gauze and he'll magically keep all that on for 24 hours (the wires go to a chest pack). We'll sleep there overnight and be done the next afternoon. It sounds like a nightmare. It was supposed to be a few weeks ago but I rescheduled because I couldn't handle the preparations and I didn't want him in the hospital during flu season. So that will happen in March. He also wants to do a brain MRI which I still have to call to schedule. That will be sedated, and we've done sedation a couple times and it's gone very well. The Dartmouth Pain Free Clinic is amazing with this and it's always been a smooth ride to sleep for Jake. Waking up is harder, and we'll need to reserve a hotel room for after we leave. Last time he stripped naked in the car, threw CapriSuns at Matt's head while he was driving, and tried to claw his sister's face in the backseat. He was *so* out of it. So being able to go to a hotel instead of driving two hours home will be key.

I'll update about school next year soon. We're in the process of his transition to middle school.

In Answer to the Child Development Questionnaire

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.

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

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.

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.

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!

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!

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.

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.

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.