My name is Leah, and this blog is where I come to gain perspective, share thoughts, stories, a few laughs, and pieces of our home with friends, family, and the occasional curious surfer. I love visitors here and I especially love feedback, so feel free to leave a comment before you move on!
Snow made its first appearance of the season this weekend, and with it came a touch of holiday spirit and the realization that it was truly time to do some decorating. Paulo spent much of the day Sunday putting up lights and garland outside. Together we prepped and erected this year's tree and the children and I decorated it with the shatterproof balls and other unbreakable items. Already Ellie is pulling off balls and garland, so this was a wise decision yet again! I pulled the boxes of decorations out of the attic, and wound garland, resurrected nutcrackers, and hung stockings inside. The children began their Advent Calendars (albeit about 5 days late) and we found a spot for the Advent Wreath Spencer made at school. We have visions of a time when we'll be able to to a bit more, but we did what we could and it does indeed feel a bit more festive around here.
It's not an oversight but a testimony to the business of life that I am only now getting around to posting pictures from this year's Thanksgiving.
This year we spent the day with my family, and as usual, it was a delightful visit. I know that cooking for our family without gluten is a daunting task at times, but my mother made a beautiful spread with all our traditional favorites--all gluten-free. There was plenty of eating and laughing, walking it off, and off course some football before a big dinner of gluten-free pies. Yes, after the lunch-time feast we had pie for dinner! It was a beautiful thing!
(In case you're wondering, that lone plate held Lexi's snack of shrimp cocktail moments before I snapped this picture. )
Our other Thanksgiving treat was our annual visit with good friends Michelle and Nick, and their boys David and Andrew. This year we hosted them for a big breakfast, and while the kids played the adults actually had a relaxed visit for a change. It gets a little easier each year!
As of my latest count, Ellie has 45 words in her young vocabulary. This is not to say that most people would recognize or understand them at this point, since most of them are decipherable only to those of us who are accustomed to their shortened forms and missing sounds, but they are unmistakable attempts at verbal communication. And in their wake, she has discarded all of her signing, preferring to get her message across with sound. "Mmm" is both "more" and the sound that a cow makes. "K-K" is cake. "Sa-sa" is "sausage" and "eh-eh-eh" is "elephant". It seems as though there are more of them each day. It's imperfect still, but I can't tell you how much joy there is in such simple sounds, for both of us. She is finally reaching us, and we are finally getting a glimpse of at what she's thinking, however basic it still may be.
She's begun to show an interest in books. She will eagerly bring me a book, say "bu!" and want to sit together to go through the pictures. She's especially interested in naming colors, animals, numbers, and of course characters from Dora and Diego shows.
At school, they've modified a copy of that Eric Carle favorite, "Brown Bear, Brown Bear, What Do You See" so that each colorful page has a spot of velcro on it. They've laminated miniature versions of each of the animals pictured in the book so that they can be matched and velcroed to their bigger counterpart. It took Ellie no time at all to understand what she was being asked to do, and then to match all of the animals throughout the book. It's become a new favorite game.
She's also begun to exhibit more imaginative, pretend play. She will eagerly turn all sorts of objects into hats by putting them on her head and "sneezing" to knock them off. Even more encouraging is the fact that she's begun to pretend to talk on the phone. This may seem like a strange thing to be excited about, but most neurotypical children begin mimicking this behavior early on. Play phones are popular for this reason--if you've spent any time with babies you have probably seen little ones putting play phones to their heads even before they're crawling.
But, like most autistic children, Ellie has not displayed much mimicking behavior. She has enjoyed the phone, but only because she likes the sounds the buttons make and the way it lights up. She never put it to her ear or pretended to talk on it until just recently. The first time she picked up the real phone and put it to her head, I immediately called Paulo and asked him to talk to her. She didn't talk back, but she listen to daddy's voice, and grinning gave the phone a big, open-mouthed kiss. It was a start! Now everything is a potential phone to be placed on her ear and babbled into. It's a beautiful thing!
I'm quite certain that i am not spending the optimal amount of time working on each behavioral skill at home. Each week we have a home visit where I am presented with a new list of goals for the week--things I should be drilling at home. Get Ellie to "mand" for items verbally 10 times each hour. Practice "go get your shoes" before going out to play, get her to take one bite off a spoon. Some days these things happen, but not every day. Still, she keeps moving forward in so many places that she is constantly surprising and thrilling. I am more optimistic than I have been at any time since her diagnosis.
As one of her teachers recently said at the end of the day, "she has great potential". I really believe that. She brings us new miracles daily, and yes, in this season of gratitude I am incredibly grateful.
It's been a tough day, but every cloud has a silver lining, right? And, in the spirit of thanksgiving, here's the list of things I'm thankful for today:
I'm thankful that Ellie was only awake for 3 hours in the night last night, not 4 or more.
I'm thankful that the gluten-filled slice of pumpkin pie Spencer was accidentally given at school this morning by a distracted teacher was tasty, and that it didn't send him to bed for the rest of the day. I'm thankful that I was able to keep my cool when she called to break the news.
I'm thankful that the corroding drain pipes that are leaking in the basement are in the furnace room and not above the sheet-rock, and that they leak more when we wash dishes than when we flush the toilets. I'm also thankful that the plumber was able to temporarily patch the pipes until Friday so that we don't have to pay double-time for the holiday.
I'm thankful that the vacuum cleaner repair man was able to extract the mangled GI Joe lodged in the hose and revive the hair-choked power head of our vacuum for a mere $64.
I'm thankful that Lexi was able to resurrect her composure after only 20 minutes of freaking out in her room this afternoon, and that Spencer only screamed about nothing through bath time and not all afternoon.
I'm thankful that Ellie's therapy coordinator was patient when Ellie decided to melt down during our meeting this afternoon.
Yes, these are somewhat tongue-in-cheek, but honestly, you all know the blessings that truly make each of my days worth it all. I will gush about them all again soon. Maybe even tomorrow, if I can fight the tryptophan long enough! Until then, Happy Thanksgiving everyone--I hope you're counting your blessings, even the messy ones!
Oedipus lives. No, but seriously, Freud didn't have to be to remarkably insightful to notice that phase when boys decide that they love their mothers. Every morning, Spencer comes down stairs, climbs into my lap and we have the following conversation. I don't know where he came up with it (all Lexi's princess stories?) but it's so regular that I've memorized it:
Me: Good morning, Spencer! How did you sleep?
Spencer: Great! I sleeped all night in my own bed!
(He likes to climb in next to Paulo when he wakes up at night--a practice we've been discouraging by cheering him when he can stay in his own room all night.)
Me: That's great, Spencer! Did you have good dreams?
Spencer: Yes. I dreamed we got married.
Me: You know we can't get married. You're my son, and besides, I'm already married to Daddy.
Spencer: Daddy say he not marry you forever, so we can get married!
(Or he may explain that Daddy has to go somewhere else, or whatever excuse he thinks might sound persuasive. Knocking Daddy off is not among the options, thank goodness!)
Me: That's not true, Spencer, is it?
Spencer : (pausing with sheepish grin) No..... But I LOVE you!
Me: I love you, too, sweetie.
Spencer: (Hugging) Mommy, you a dreamboat. Let's marry!
And around we go. I know that it's just the latest of many repetitive conversations that Spencer's decided he likes, but it does crack me up a bit. Sometimes this is followed by propositions to Lexi (also turned down) and then complaints that he'll "never get married", as though this should be a pressing concern for a four-year-old. At this rate, by the time he actually does find his perfect match he will have polished his proposal to perfection, rendering it practically irresistible. Maybe that's the whole idea?
As most of you reading this know by now, it was Ellie's lack of language as she approached the two-year mark that prompted me to get her tested. And those tests, beginning in June and culminating in October's diagnosis of Autism, that resulted in the series of daily and weekly therapies that keep us so busy.
This week, thanks to the arrival of the flu in the house, Ellie has had neither speech not occupational therapy even once. Instead, ever since Spencer's first symptoms appeared almost a week ago, we have been quarantined here waiting to be well enough to re-enter society.
A brief word on the H1N1 virus, as this would appear to be what we've had: not the end of the world. Seriously. It may be that our overall health was good to begin with--we all take our vitamins and we're careful about our diets-- but although it has been miserable and prolonged (Spencer still had a slight fever yesterday, five days after the appearance of his first symptom), it has not been a frightening illness in any way. There was some vomiting for Spencer, but I've seen worse in your average stomach bug, and that segment was over in 24 hours. There have been fevers, but they respond well to Motrin and we've been able to keep them down to 103 or less. There has been a lot of fatigue, muscle aches, headaches, stomach aches, sore throats, congestion and general misery, but again--nothing frightening. For what it's worth, we've treated with regular doses of Motrin, multivitamins, and larger doses of vitamin D3: 1000iu daily for Lexi and Spencer, and 5000iu daily for Paulo and myself. And strangely enough, I have yet to get sick. I'm still waiting for the other shoe to drop. It would be just my luck to get this thing as soon as the rest of the family is healthy again!
In any event, we've been stuck at home and I have been frustrated to miss all this therapy time. I've been trying to steal moments here and there to work with Ellie on the skills we're supposed to be working on at school, but it isn't as long or intense as the time she spends either with the speech therapist or in school. And there are almost always distractions. So on the days when she has her bath without a sibling I've been trying to spend some extra time playing, labeling, and working on encouraging appropriate responses. All the work at this age is based on play, anyway, so almost any place that you can control the play can work.
Tuesday night after dinner, we went upstairs for Ellie's bath as usual. As usual, she made a beeline for the basket of toys and began to toss them into the tub, one at a time. The bath filled and we finally added one naked toddler, babbling and splashing. I was watching quietly when she decided surprise me by talking! One at a time, she held up the toys we'd played with the night before and labeled them for me: bus, train, car, dolphin, duck, ball, fish...The words weren't perfect, but they were deliberate attempts at the right sounds. My jaw dropped. She grinned, clearly pleased with herself. Again and again, we came back to the toys--I'd point and ask her, and she's answer with the same sounds she' d made for each object before. Tears sprang to my eyes. It was the best gift she could have given me. I called to Paulo to come and see, but by the time he got up stairs she'd decided it was time to play a different game, and that was that.
Yesterday, Wednesday, she started to say "chip" and actually pulled me to the kitchen several times to stare at the bag of barbecue potato chips on the counter and say "chip". And, at the end of the day she repeated her performance in the tub with the train and the bus. I was overjoyed.
I am thrilled and hopeful that this could be the beginning of more meaningful language. Paulo smiled knowingly at my surprise and wonder. Having been a late talker himself, he's been convinced for a long time that she would start talking when she was three, like he did. I want him to be right, and yet I am afraid to get too excited. I have heard and read that sometimes these things come unexpectedly with ASD kids, and then leave just as quickly and mysteriously as they appeared. I am praying, and crossing my fingers, and I just can't help hoping that this--this is the beginning we've been waiting for.
The kids had two Halloweens this year: one with Uncle Alec and Crystal, and one with Paulo's family. Lexi and Spencer loved trick-or-treating: "Trick-or-treat! I'm Lexi and I'm supposed to be a Fall Fairy!" "And I'm BUZZ LIGHTYEAR!" Ellie, on the other hand, was not so keen on the whole thing. She did dress up for both events (plus a Halloween party at her school) but you'll notice that she did not go to anyone's door. Maybe next year!
We'll be wading through the loot until Easter, but the pictures will last for years. Here they are: the Fall Fairy, Buzz Lightyear (from the Toy Story movies), and Princess Fiona (the ogre princess from Shrek), and family.
Twenty years ago this month I was living in Munich, Germany. I can hardly believe that it's been twenty years--it makes me feel so old! Because in many ways, my memories of those six months in Munich are clearer, more vibrant, more joyful than most of my other high school memories all together.
One week before the Berlin Wall came down, my class took a field trip to Berlin for the week. Most of the time was spent in West Berlin, naturally. After living in Munich, I was less impressed by Berlin. While Munich was clean, friendly, and safe, Berlin felt much like any other city--busy, dirty, impersonal in many ways. We stayed in a youth hostel and dyed each other's hair with henna. We gawked and the McDonald's on the corner (I don't remember any McDonald's in Munich) and got lost in the subway which, unlike Munich's U-Bahn but like every other subway I've ever visited, was dark, somewhat dirty, and smelled of hot metal and old urine.
As a class, we had permission to visit East Berlin for one day. We gathered at the checkpoint where East German guards with machine guns checked our passports and issued us one-day travel visas. Strangely, East German visas were not stamped into our passports directly, but onto small sheets of paper which were slipped between the pages of our passports to be collected by the guards on our way out. We were also required to change 20 West Marks into East Marks, and we would not be allowed to keep it, or change any of it back on our return to the West. There would be little evidence of our trip to bring home.
Once inside, it was like we had stepped through the looking glass into a city from the past. A grey and dirty past. Our clothes and hair were conspicuous for their style, color, and flair amidst so much that was drab and worn. The buildings were crumbling and dreary, and many structures that had been bombed during WWII still stood in ruins, their crumbling holes like gaps in a mouth full of rotten teeth. We instinctively lowered our voices as though we were intruders in party dress who had found ourselves accidentally crashing a funeral.
We had all day to spend our money, but there was next-to-nothing to buy. We tried some coffee, but it was bitter and impossible to finish. Several people curiously bought East German cigarettes for the novelty of it, only to hack and spit furiously with the first puffs, shaking their heads in disgust. Most packs were given to hopeful-looking East Germans hanging on a corner eying us cautiously. A couple were kept as souvenirs. We toured a ceramics factory where I bought a single blue-and-white mug for my mom, mostly because it had some aesthetic appeal and the words "Made in East Germany" were printed on the bottom. Little did I know the historic value those words would soon have!
We passed several parking lots full of the East German Trabants: cars we called "Trabis". It was surreal to see lots full of a single kind of car, and streets lined with them, end-to-end in varies states of disrepair. Many shops were closed, or only had a few items left on dusty shelves. East Germans we passed on the street kept to themselves, speaking in low, hurried voices with strange, muted inflection. There were no raucous, laughing groups of youngsters or kids on bikes, or street vendors or musicians. It was unnaturally subdued and grim.
The day dampened all of our spirits. It was oppressive just to have to stay for the afternoon. After choking down a cardboard lunch, we huddled together to count our change. Many of us still had too much left over, and nothing we wanted to buy. One of my classmates noticed a few people sitting on the sidewalk outside the grocery. They looked even more bedraggled than many we'd passed and several of us decided that we would offer them the change in our pockets--they certainly had more need of it than we did!
Their reaction was heartbreaking--such gratitude and honest surprise. One woman had tears in her eyes. I couldn't imagine living in this dusty, hopeless twilight world.
A few hours had passed and yet, as soon as we passed back through the checkpoint into the West it was like walking back into the sun after spending the day in a dark theater. We all found ourselves breathing easier, blinking as though we were just waking up, laughing again, shaking ourselves to get rid of that close, oppressive feeling. But the taste of that afternoon stayed with us. I can still taste it, bitter on my tongue, dry and crumbling like rotten plaster and rusting metal and old dust.
A week later, back in Munich, we got the news that the Wall had fallen. Friends called their families all over the world, laughing and crying at once. Celebration and disbelief swept the city. Trabis rolled into town, and there were stories on the news of people burning them in celebration. East Germans began to appear in Munich in little, hurrying knots. They were as conspicuous on Munich's city streets in their drab, out-dated overcoats and bulging bags as we had been in East Berlin. Their voices were still hushed and toneless, and the children gawked shyly at everything and everyone. It was not just the end of an era, it was also the beginning of something new and overwhelming. I was too young to appreciate the enormity of it all, but I have been forever grateful to have been there during those pivotal months.
I still can't believe it's been twenty years, though. Twenty years--einen augenblick!
Note: For something a little lighter, check out this 1960's commercial for the East German cars that were so hated when I was there in 1989. My German is rusty, but among other things, they claim that the car is maneuverable, fast, and tough--what a joke!
I know. It's been days and days and I haven't posted. By now you should have cute pictures of children in Halloween costumes with sticky fingers and candy grins. There should be an anecdote or two about our escapades and at least one funny utterance from Lexi or Spencer. There should be at least one update about Ellie's school days and her most recent evaluation. I've been meaning to write it all down, but I've fallen down on the job.
In truth, most days I've been too busy to write, or too tired, or both. My time has been spent rushing from one obligation to the next, hustling children, packing and unpacking, checking lists, feeding hurried meals and prepping for the next thing. Last week I was doing this with a head cold and less sleep than usual. It left me no energy or interest for writing. This week Spencer's come down with the flu, and it looks likely that within then next 24 hours or so Lexi and Paulo will join him in misery. I'm praying that Ellie and I can hold on to health a bit longer. I can't afford to be sick again--not while everyone else is, anyway.
So there are pictures, but I don't have time to post them. Ellie and I are the only two still awake now, at 8pm, and soon she will want to settle into a cuddle and some sleep, too. Then I have some cleaning up to do before I can lie down, one ear open for the sounds of coughing, crying, or vomiting. Tonight I'm just praying that the sick can sleep peacefully, and the healthy can stay well another day.
Perhaps, in a few days, I will be back with those pictures and a few laughs. Tonight you have my apologies. I hope that you are all well. We'll be back soon!
Yesterday was a blur. Ellie had 'school' in the morning, the electrician was here for most of the day working to install our back-up generator, the generator itself was delivered, my mother was here, briefly, bringing Spencer home from preschool, I had to make meatballs in there somewhere, and go over Lexi's school work with her, I had a meeting with the program coordinator to discuss Ellie's transition and to establish new goals, and the older two had swimming lessons. Whew! There was precious little time to sit, observe, breathe, or think. But there was a moment--one that made smile, and even chuckle a bit in the rush.
While I was sitting in the diningroom with the program coordinator, Lexi and Spencer finished lunch and ran off to play in the other room. In the relative quiet of the house, their voices were clear and we inadvertently found ourselves eavesdropping on their play while she jotted down notes.
Lexi: What to you want to play, Spencer?
Spencer: I know! Let's play our animals are throwing up!
(This, for reasons I may never understand, is a favorite game)
Lexi: OK! And you can bring your favorite animals and I'll bring my dolls.
Spencer: You can have some of my animals, too.
Lexi: You want me to help your animals, too? Because you love me?
Spencer: Yes! I love you bigger than the sun, Lessi!
Lexi: I love you, too, Spencer. I love you so much that I would give my heart away to you if I had to. I love you that much, with my whole heart!
And in that moment I was reminded most powerfully why we parents DO all this. It was Mommy's payday; one of the moments make it all worthwhile.
