What's Missing

I don't mean to harp on the autism thing. Really, I don't. I know it sounds like I am whining, when actually we are very lucky to be making such great progress. Still, we have been perplexed from time to time over the past year by some of the reactions of people around us. So, here goes:

Imagine if you will falling in love. Like truly, madly, deeply, desperately in love. A star-crossed, soul-mate sort of thing. Now imagine one day after a few years of blissful happiness together you wake up to find somebody else beside you. Someone who looks very much like the person you fell in love with, but with an entirely different personality. Cranky, unpredictable, less verbal, harder to reach. What's more, you find that this has been happening at an alarming rate to people all over the country and nobody knows why. You are confused, frightened and sad. Yet people all around you, people who get to keep living their own lives as normal, keep saying things to you like "look on the bright side," "be grateful for what you have," "how can you tell?", and "he seems fine to me." 

Maybe this person next to you is a great person - someone you could easily fall in love with, even. That's not the point. The point is it's not the same person. No matter how much you love this new person in his place, wouldn't you still be a little sad about the person you lost? Wouldn't you still want to know what happened? Wouldn't you still look for him?

Now, imagine this is your child. 

When should I have known?

Over the course of the last year, I have been watching Thumper like a hawk. It is nowhere nearly as blissful and rewarding as the days when I had nothing but time on my hands to play with Bear and watch him grow, with the self-satisfied confidence that I was raising the world's most perfect child. With Thumper it is more of a consistent mild state of panic, constantly comparing each new achievement or lack thereof to his older brother. Thumper crawls just like Bear did, does that mean he is going to be autistic? But look, he is actually figuring out the shape sorter, does that mean he is going to be "OK?" Bear never played cars like that, should I have known then?

'Should I have known then' is actually a big preoccupation of mine. Not so surly dad and I both agreed for a long time that Bear's language and general development seemed to slow down to a virtual standstill somewhere between 2 and 3. Watching Thumper grow, though, I am constantly second guessing myself. I do remember a vague feeling of unease at Bear's second birthday party, but the more I scour my memory, the more I wonder if there were signs of autism even before that. It is an important question, and one that haunts me despite my mother's well-meaning urges not to "beat myself up," because the answer might unlock the riddle. What would make a child who made sustained eye contact on his third day of life, and who many described as the "happiest" and "friendliest" baby they have ever met, suddenly develop autism? If there was an environmental trigger, might I be able to avoid the same heartbreak with Thumper? The problem is, that trigger could be anything from vaccines to the air we breathe to organic pesticides to the floor cleaner I have been using, etc., and more than likely a combination of everything. 

Still, I will continue to rack my brain for clues. I have come up with a series of moments in time that illustrate the denial I was living in, though connecting the moments to a timeline is more difficult. For instance, I can remember wishing at the playground that Bear wouldn't laugh like that for fear that people would think there was something wrong with him. I remember many conversations with NSSD about why Bear wasn't speaking in sentences yet, even though he had an astounding vocabulary of nouns. I usually explained it away with the "children work on one skill at a time" excuse, but couldn't really explain why he didn't seem to be developing any other new skills. I remember telling my mother half jokingly at one point (I think after he ate the car window shade) that we sometimes couldn't really tell if he was a genius or retarded. [Hint: if you ever catch yourself thinking this about your child - GET HELP! (Unless you are the parent of a teenager, in which case it is totally normal.)] I remember being impressed that at such an early age Bear was able to flawlessly pronounce "hippopotamus." Then, one day he could not, which I explained to myself as "well, we haven't talked about hippopotamuses in awhile." Looking back, I think that is the moment when I should have acted. And yet, how seriously would his pediatrician have taken me if I had said to her "I don't know what is wrong, but he used to say hippopotamus and now he doesn't."?

For most of Bear's life, I checked his developmental milestones against those listed in the "What to Expect" books. I also have seen various autism awareness ephemera, listing signs to watch for, and I have to say, even those wouldn't have helped me out. Bear's case was far too subtle. Last week, as I was preparing for Thumper's one year Dr. visit, I found a list of developmental milestones to watch for on the CDC website. They were direct. They were specific. And if I had seen them two years ago, I would have known. I wish that every pediatrician's office would distribute these lists to every parent at the appropriate aged check-ups. Since they don't, in the interest of public service (in case any one ever reads this blog), I am linking to it here. 

And here I thought we were doing so well

Bear had an intake evaluation this week to place him in a social language group. The speech therapist called me today to discuss his placement. She is willing to try him out in a small group with 2 other speech-delayed preschoolers, but based on his inability to sit still and have a back and forth conversation in the interview, she is concerned that he may be in need of one-on-one therapy before he could benefit from a group. So basically she is saying that my son does not have the social or language skills to participate in a social language therapy group.

Great.

"My mom hadn't had a hot meal for herself in 15 years"

Somehow, when Bear was a baby, I had enough storage in my memory banks to keep constant track of how many times he had nursed in a day, at what times, for how long and on which breast. I also could tell you at any given moment how often he had pooped, at what time, and the color and consistency of the poop. I kept this up until he was well into solids, and can remember laughing with my mom's group about how we all did it. I had given up the practice with Thumper until a recent confluence of events put me on poop patrol once again.

Part one

The first part of this story began yesterday, during my usual Monday morning trip to Trader Joe's. Thumper was seated in the cart for the first time, and I was pushing it with one hand protectively at his side, while trying to keep Bear from running between the legs of the other shoppers in his quest to find every picture of a parrot or toucan in the store (there are a lot.) When I turned back to Thumper, he was busily gnawing on my shopping list, which now sported a hole in it the approximate size of Thumper's mouth. "Some of this list is missing" I said. "Where is it?" Thumper looked at me and grinned. I pried his mouth open and stuck my finger inside just enough to feel the paper right before he swallowed it. Immediately I began to imagine the resulting bowel obstruction, the disapproving looks of his doctors, the accusations of Munchausen's syndrome by proxy (he has had a very eventful first 6 months), and the eventual CPS investigation...

So this morning the boys both woke up at 7:30. I got Bear settled in with his requested "Chocolate" cereal (it's granola in a dark brown box, but if it makes him happy to call it chocolate cereal, whatever) and went to retrieve Thumper from his crib to change his diaper. A cursory scan of the contents didn't reveal any paper, but the mere presence of a poop was enough to allay my fears of an impending abdominal surgery. Upon closer inspection, however, I did uncover uncover the letters m-i-l in my handwriting, and all was right with the world again. Luckily, I did also manage to remember to pick up the milk, even without that part of the list.

Part 2

On to part 2. I returned to the kitchen where Bear was finishing up his cereal, and decided to finish up the last of a 3-day-old loaf of ciabatta by making french toast. Bear, always interested in the cracking and mixing of eggs, began sliding a kitchen chair toward me, so since he is never that interested in french toast I helped him make scrambled eggs. By the time that was done and I was ready to get back to making french toast, Thumper was fussing. It seems mommy forgot to feed him. After nursing the baby and sitting him in his highchair out of harm's (namely Bear's) way, I finally finished making the french toast, cut up some fruit and was about to sit down when...Thumper was fussing again. A glance at the clock told me it was nap time already. I went to put him down for a nap and returned sometime later to the kitchen where Bear stopped me to ask for a hug. I bent down to hug him and as I stood up I noticed something black on the sleeve of my shirt. "Sh*t."

Literally.

Let's back up a few months. Right after we got Bear's diagnosis, while I was in panic mode and reading everything I could find on autism, I learned a couple of things - 1) Autistics are possibly the hardest group of people to potty train, which has proven to be true in our household, and 2) A large percentage of people with autism have leaky gut syndrome and/or food allergies, something that set off alarm bells in my head because Bear's poops have never, shall we say, solidified.

So yesterday we ran out of regular diapers and Bear was back in his pull-ups. Yesterday he also ate about half a pint of blueberries for breakfast. The combination of his normally runny poop with the large quantity of berries led to a massive, black, oozing poop, breaching the levy of the flimsy pull-up.

After stripping us both down, washing up the poop, getting redressed, throwing the bathroom rug onto the back porch, and washing my hands with antibacterial soap 37 times, I was finally able to eat my breakfast and clean up the kitchen in peace.
It was 10:30. As I flipped through the Ikea catalog and pondered if it was worth trying to save a $15 rug, even one that matches the color of the bathroom walls exactly, and which I happen to know is no longer available in that shade of cookie monster blue, I heard a thumping noise in the back of the house. I went to investigate and found a giant Thomas balloon getting the crap beat out of it by the ceiling fan, Sir Topham Hatt still dangling helplessly from the string, Bear nowhere to be found. Suddenly, squealing from Thumper's bedroom.

Round 2 begins.