Love and a Dustpan

I haven't swept the floor all week. Not once. It is unimaginable that my kitchen floor could go six hours without needing to be swept, and it has been nearly five days. I am giddy that my feet are free of crumbs, pebbles and warm black dirt from our backyard. 

Sweeping is one of those things that I do not put into the category of "things that make our family different from other families." "Carries wheelchair in vehicle at all times" and "must have a straw or sippy cup available for my 10 year old" are in that category, but sweeping? How many times each day does a family with a ten year old boy sweep the kitchen floor? At our house the number is nearly uncountable.

Jake has been at camp this week. He's likely living it up right now at a dance or talent show, followed by some happy snuggling into his bunk. He's spent days surrounded by singing and crafts and pool noodles and fun. When he comes home, he'll grubby and covered in sunscreen and his laundry will need to go through both pre-wash and second rinse. And by this time tomorrow, these bare tiles will only be a memory.

Because Jake spills cereal, fruit and crackers. He drops his sippy-cup onto the floor creating little speckles of milk that spray across the hardwood, inviting dirt he has tracked in, to cling and accumulate. He takes at least a pinch of soil out of the kitchen garden planter on the porch, and brings it inside with him every time he enters the back door, and he dribbles pebbles and tan bark from his hands, his shoes and his pockets. He has fine layers of grit on him because he sifts rocks from dirt with the patience and endurance of an archaeologist on the verge of a great find. He gets dirty every day.

So as much as I love the feel of treading across cool ceramic tile, it also reminds me that Jake isn't home. And as much as I know he loves camp, I will be thrilled to kiss the top of his little puppy-in-the-rain smelling head. 

And while the reprieve from sweeping has been lovely, it will be wonderful to have myBoy and his sand-filled shoes home.

Label Me Capable

At the time my son was almost three we realized that without a label, without an official diagnosis, it would be nearly impossible for him to get services from the county or state. It is required so they can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It's a pain in the ass, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is wrong with your child is a serious lesson in patience, persistence and the power of language.

No one wants to be the first person to label your child. We begged to get "cerebral palsy, ataxia" to describe Jake's odd way of hipping and hopping and stumbling around. No one worried about anything behavioral at that point, mostly because the check box for MR (which is the nice way of saying mentally retarded) had already been checked. But just a plain old MR won't get you much. It's better to add a little HI (hearing impairment), or better yet there's number 5 which is vision impairment. We don't have checks in those boxes, but we do have most of the other ones; developmental delay, speech/language impairment, multiple disabilities. Truthfully the best one I've found so far is OI, orthopedic impairment. If you get that box checked, the money comes out of some other pocket called the "low incidence fund", and people stop caring how much your child's little switches and talking buttons cost because the school district doesn't pay for them directly, it comes out at a different level in the budget. When we started this game with his first IEP in 2003, the box for Autism wasn't even on the paper.

When Jake did  receive the autism label, a year later, written down on the letterhead from the pediatric psychiatry department from a prestigious university, I called the office back to make sure that they knew they had put my son in the "autism" category of the study. The poor PI stuttered a bit and asked if anyone had ever talked to me about the fact that my son was autistic. I jumped in and said, "Oh, don't worry, we're thrilled!" She let me know that I was the first person she had ever spoken to that had used the word "thrilled" after an autism diagnosis.

But I really was, because there is a power in naming things. We can box it up emotionally. We can explain it. Do you know how much easier it is for my son's grandparents to say that their grandson has "autism"? The first three years were spent mumbling a lot of, well he's "behind a little" and he has "low tone", well, actually he's "behind a lot", and he "isn't talking", but he has a "great appetite", and he's such a "beautiful boy" blah blah. Thank God we got that one little word.

I get why labels could be a bad thing, how they might hold you back, or allow other people to peg emotions or expectations on you based on what you've been called; bright, disappointment, overachiever, does-not-apply-herself, genius, chattycathy, princess, precious, trouble, smart ass, smart mouth, back-talking, ungrateful, messy, funny, beautiful, too-big-for-her-britches, too big to wear that, too smart to do that, responsible, mature for her age, growing up too fast, capable, little girl who can do anything she wants if she just tries hard enough.

I've been labeled since I was born. I am the first born. That was probably my first designation, then, the "oldest", but like most labels, it doesn't quite fit anymore. I have older step-sisters now, and older sisters-in-law, and in my group of friends I am variably the youngest, or the middlest, but very rarely the oldest.

Towards the end of high school, and through my first years away at university, my parents, the side that has not one, but two psychologists, had a chart on the pantry door. It was a barometer of sorts with each of the four children's names able to move up and down depending on where we were currently "being appreciated" in the family. At the top were words like "genius" and "precious" and perhaps "our pride and joy." Then there were probably words like "good job", and "still gets a key to the house." Towards the bottom were phrases like, "willing to sell to highest bidder", and "a curse upon our house" and other terrible things you should never say about your children, or the family pets, who also, somehow had their names on the door as well. It was very distressing when the rabbit who pooped in the living room was higher up on that chart than my name.

I'm not sure how we got moved around. There were points involved, sort of, but once when I asked how many points there were in total (so as to determine whether losing 1000 points was worth it to do what I wanted to do), there was no definitive answer, so I know that wasn't all of it. The kids, we moved each other's names around a lot. My sister, Demanda, was almost always "precious" given her proclivity to near-death experiences, and grave illness. Though to be honest, she still gets "precious" most of the time. Looking back at some of my actions during college, I'm surprised I got to stay on the chart at all. My younger brother was generally a good kid, except for the Christmas when he asked for all of the receipts, so he could exchange the gifts we got him for something he "actually wanted." I don't think "wienie" was on the chart, but it would have fit. "Genius" was a good label to have, at least in my book, and my youngest brother and I have fought over that one for years. (My parents think it's funny to tell each of us that they know our IQs but won't share them with us. I think they tell each of us, privately, that ours is the highest, so we can feel superior to our siblings, and they can have something to giggle about.)

When I talk about "the chart" now, as an adult, most people look a little bit horrified. And I suppose that labeling us, constantly, was perhaps a little bit mean?, but also so honest and encouraging. I am capable. I can do anything I set my mind to do. After all these years, I think that's my label. So I suppose I'm a bit of a superhero. I can do anything. Is that such a bad thing?

I always knew exactly where I stood in my family. I know I was loved, by all of my parents; no matter what they called me, I have always felt loved. And there is that whole "power in naming things", or at least calling us out for our deeds, good or bad. If everyone, at the same time, knew that my parents were disappointed in me, maybe that helped one of my younger siblings avoid whatever quagmire I had slogged through. And being praised by your parents, in view of your siblings? Well, that felt great, but it never lasted long, because it would only be a few minutes before your name would slide down and the damn rabbit would hop to the top. I think we each tried hard to be towards the top of that chart, not because it would earn us more love, but because that's one of the ways our parents pushed us, in school and in life, and in relationships. Those labels were worth aiming for.

I understand when a label can stop you from growing, or allow someone to have a lower expectation of you. When someone called my son "mentally retarded" instead of "developmentally delayed",  I had a visceral response, because, to me, one label is finite, and the other holds optimism. But I know it is ridiculous for me to let those few words hold so much power over my emotions.

Labels help us identify each other, and if we are smart, we recognize that labels are really only for the person who is using them, so they can know how to interact with us. I can't really change what label someone puts on me, or my son, I can only change my behavior. It really shouldn't matter at all what words someone else needs to describe me or my kid. What will always be most important is that he gets what he needs, and whatever box we need to check, we will.

But you know he'll always get what he needs, right? Because I'm his mom, and I can do anything, as long as I set my mind to it--at least that's what my parents told me.

*****

A version of this post was featured in the Life section of Salon.com

Bad for My Health-Good for my Spirit

• Going to Dairy Queen with my kids (even better if my husband surprises us there.)
• Drinking a bottle of champagne with my sister.
• Napping on the couch, my feet tangled with my son's, his body having just learned to sit still long enough to cuddle.
• Talking late into the night with girlfriends who live too far away to see at my local coffee shop.
• Trying at least seven kinds of bold coffee in my new "Pod Canchine" (Single cup coffee maker)
• Licking the frosting off my fingers as we decorate Valentine's day cookies.
• Beating Critter Crunch (do NOT start playing this game on your iPad)
• Watching a movie with my husband "past bedtime on a school night."
• Sneaking candy before dinner with my daughter.
• Skipping the umbrella because -it's only water

First there was Hawaii... No, It was Santa Lucia?

So there was this whole "Holiday Season" thing, which made me realize a few things:

I am incredibly blessed, and to find myself going from Honolulu's 82 degree sandy beaches to the shores of Lake Tahoe all in a two week period? That is truly amazing. To the left is a photo of Mokolii in Kaneohe Bay. We went on a little driving tour to get Lucy to take a nap.

I love my family. I was able to see 4 out of 5 siblings, and their spouses and children. Plus all sorts of parents. We are really all over the place on many topics, but one thread that runs through each of us, no matter which side, is humor. We are a funny bunch. There isn't a stone face among us. I have laughed and smiled so much lately, and for that I am grateful.

Life really is more relaxing when there is a mai-tai in mommy's hand.. or daddy's or both.

Descartes and I really like each other. We enjoyed each other's company when we were alone and when we were with my family, and I cannot think of a single disagreement we had then entire holiday break. Now this afternoon was a whole 'nother story. just kiddin'.


I don't ever need to swim with dolphins ever again. They were cool and all, but after Lucy got bonked in the head (I cannot upload the video clip right now, but I will someday.) I decided that it is sort of like horse back riding for me. I could probably be convinced to do it again, but I will never seek the adventure out on my own (unless I am taking a pack mule into the Grand Canyon, and then, that's a pack mule). That's Lucy being cross-eyed pointing to where the dolphin bonked her, but really the dolphin bonked her on the left side of her head just below her temple. By the way that is a really *really* awful sound to hear.. you know the sound of a 500+ pound animal bashing its head into the skull of your youngest child.

Lucy loves all things dolly and girlie, but she will take. you. down. in a wrestling match. She is truly turning out to be the kind of little girl I hoped we'd help grow. As much as she makes me crazy, she is full of spunk and vigor and beauty and compassion. In Hawaii she kept up in the pool and on the beach with her cousins, all older. She glammed it up with sunglasses and sundresses, but had no trouble covering her entire body with sand, rolling about in its warmth. She was a joy to watch. She had a very hard time when all the slumber parties were over.




Jake still really loves off-roading. We went off-roading at Kualoa Ranch and were lucky enough to have an entire Pinzgauer to ourselves. Jake was so happy. Lucy loved it too. The best money we have ever spent in Hawaii. I love hearing Jake laugh. He's been laughing and smiling so much lately. He won "best grandkid" in Hawaii, due to his complete lack of crying or tantrums, unlike the other munchkins who each had to be reminded at least once that there is "no crying in Hawaii." He received a lot of praise from my parents and I could tell it made him happy. He was a great kid on the plane both there and back, and of course he loves our drive to Tahoe.


We need to buy a small camera. We borrowed one from Descartes' daddy, but it busted itself up half way through the Hawaii trip. I may never get the photos off that card.

I realize the more fun we have the less photos we take... or I take at least. I had my camera in my hand the entire time on the off-roading trip so it wouldn't fly away, that's why we have so many from that day, but I really had a great time for two weeks, and the thought of taking out and caring for a camera seemed too much a barrier. I was actually being with my family in the present.

We came back from Hawaii, unpacked our shorts and threw in sweaters and long johns and went to Tahoe the next day? the day after?

For New Year's Eve we somehow convinced Nonie and Bob Bob to watch all four of our children and Jaster, Demanda, Descartes and I went to downtown South Lake at State Line. I cannot remember the last time I laughed that much in a single night. We played Taboo! for a long time and I'm not sure why but it turned my husband into the most hysterically funny super competitive crazy person. I'm sure the cocktails helped. Next year we are going to send the grandparents to the hotel with the kids and stay at home with the hot tub, the kitchen and the Wii. It was a great way to begin a new year, laughing. And while I had a lovely NYE last year with Squid and Seymour, I must say it was great to wake up to room service and working plumbing.
(I spent New Year's day 2009 cleaning out the pipes in front of my house... so not awesome.)

We drove down to Cabella's in Reno one day with all of the family in our Adventure van... so cool to have the whole family in one car like that. I sat in "the mommy seat" which means I handed out crackers and juice to all 50 kids. Nonie sat in the last row. She gets carsick. We laughed a lot. Our children took over a 125000 square foot store with no problem. At one point I am fairly certain they gave my sister 100 tokens for the shooting arcade if she would get the three, three year olds out of the ice fishing tent displays.

The weather in Tahoe was beautiful. I love it when we are trying to get kid to take a nap and we can take a little jaunt up to Emerald Bay. That's Fanette Island in the photo. The only island in Lake Tahoe.. and I get to see it when we are just cruising around. jeesh. I am so lucky.




My many many thanks so Grandpa PJ and Grandma Corky for the lovely trip to Hawaii and to Jaster and Demanda for hosting us in Tahoe.

Turning Corners in a Round House

last night as Jake settles into bed:

He is kicking the bed frame which then bangs against the wall and shudders the house, making it sound like he is thrashing about when really he is criss-crossing his legs, practicing really a new skill of making one side of his body cooperate with the other. His toes cling to the bed post as he creeps them up and down lying on his back looking at the very dimmed light fixture. I crawl in next to him for a moment, because I miss him, this calm him, because I want relationship with my own son who won't can't make eye contact with me. I want to at least feel close to him, and since he isn't flailing about I think I can. So I lay on the twin bed. He is nearly as long as I am, but he is all bones and muscle and joints. Even his frame is hard to hold because he is angular against my motherly roundness. I hug him and he rolls into me, his face next to mine on the pillow.

me: "Jake, I love you so much. I'm so glad you're feeling better."
Jake: "Mmph" said with a smile
me: "Jake I love you. Can you tell mommy 'I love you?' Can you say 'love'?"
Jake: clearly "Love."


He is happy this morning, lots of happy sounds and running up and down the stairs , jumping and smiling at the sight of a fresh cup of milk or more cheerios. Maybe he is back from where ever he goes when he is so upset in his own body. He's back and he may have learned more new skills again. It was hard this time. Physical injuries and a baby sister who felt abandoned. Descartes and I only fought one time, and only for a moment, so we are better at this, but we're still learning.

There's no rulebook for our child, or this life. There's only slowly moving forward, hoping that the next time we come more prepared, with a more fortified army of caretakers, medications and resources. Because no matter how far we've come, no matter that this morning it feels like it is over, I know another episode is coming; my calendar says next week.

A is for Apple

Jake ate an apple. Really. All by himself. Not chopped up, not pre-speared on a fork. He ate an apple.  He ate the apple pictured below on the right. 

  

Bite by bite he picked up the apple, took a nibble then set it down on the counter. Then he picked it up again, chose the next bite and took that one too. I started to cry. 

I told him I was really proud of him. Lucy, not really understanding the great accomplishment, but loathe to miss an opportunity to be a part of a good time, ran up and said "Good job. Jake loves apples!" 

Jake has never been able to do this before. Well, if we did let him have his own apple he would eat indiscriminately, core, stem, seeds, whichever. This time I watched him choose the next bite. 

Sorry to be obsessing over this seemingly small task but add it to this little list:

• new skill: Jake can pull the covers over himself as he lies in bed. 
  
• After grabbing the hair of a little girl on the play structure on Thursday (as she raced by him). I said "Jake! LET GO!" and he unclenched his fist, her shiny hair then slid past his palm and it looked more like the hello he was trying for and less like an attack.
• new skill: After being unbuckled, Jake walks off the bus without assistance and grabs my hand at the door.
• Jake tried to tickle his sister tonight after she tickled him. He touched her stomach, instead of a random grab for whatever part he could find. 
• Jake sat and listened to the entire story "The Giving Tree" when I just read it to him tonight.

It has been a pretty rough month...maybe even six weeks. Colds and migraines and general fussiness, and now, once again it feels like we have some small but significant gains in the aftermath. 

I will need to remind myself the next time I am in those dark hours, that this light feels so very good.

Coolness

We had our reading at Book Passage yesterday for Can I Sit With You? (www.canisitwithyou.org).

It was really pretty neat to present our book in the same little nook of Book Passage that hosts celebrities like Anne Lamott, Salman Rushdie, Lewis Black, Carl Hiaasen, Henry Winkler, Barbara Walters, Mario Batali, Brian Copeland, Maria Shriver, Alexander McCall Smith, Leah Garchik, Isabel Allende, John Gray, Amy Tan.. not all of these people are my favorite authors, but they are names most people recognize.. and I stood at the same little podium and talked with Shannon about our book, the impact I hope we are making, and how we managed to do it all for very little money, all the while adding to the coffers of our Special Ed. PTA SEPTAR (www.septar.org)

You know we are doing a second book. We are still accepting submissions until the end of the month. If you have a story that you would like to tell but aren't sure you can write it yourself I would be happy to ghost write it for you. Just send me an email and I will help. We can even use a pseudonym if you don't want your name associated with the story but you think it should be told. C'mon write a story send it to ciswysubmissions@gmail.com it will make you feel better to get it off your chest.

Thanks for all of your support.

Is It Friday? Well it Must be Since Jake's Talking!

I just got a call from Janice, Jake's amazing teacher. Happy Friday!

This morning on the playground during A-PE (adaptive phys-ed)

Anna: "Jake look, there's the circle. There's the square. There's the triangle."
Jake: "Triángulo"

for those of you who do not speak Spanish, that's triangle. What's even funnier is that Anna was speaking English to Jake but his echolalia was in Spanish...so does that still count or is that spontaneous language?

______________________________________________

and later today

The class went to get ice cream because it is hot today in Deadwood City. When they got back to the classroom, Jake ate all of his ice cream up lickety-split (no surprise there).

And then he ate the rest of Anna's ice cream too.

Anna: "Jake, your ice cream is all gone."
Jake: "NO."

Janice: "Jake, would you like some of my ice cream?"
Jake: beginning calmly and ending with high-pitched happiness, "yeAH!"

a few minutes later...
Anna: "Jake, you should say 'Thank you' to Ms. Janice for giving you some of her ice cream."
Jake: beginning slightly muffled then ending clearly..."Thank YOU!



parenting note: to encourage open communication with Jake I must
a) learn Spanish
and
b) carry ice cream on my person at all time.

Apparently I am a Grown Up

So last night as we drove to Tahoe with way too little sleep under my belt, I was trying to find ways to keep my mind active while I navigated the car through the Bay Area and on through Sacramento while Descartes dozed until it was his turn to wind up the mountains.

I decided to go through each major high school dance in my head; Homecoming, Winter Formal, Sadie Hawkins, Prom Spring Fling, anything I could remember. I tried very hard to remember my dress, my shoes, my hair, my corsage, my date, who we went with and where the event was held.

It was pretty funny to recall... Freshman year, Homecoming Dance: Red two piece strapless yarn-dyed tafetta with peplum, dyed-to match very low heels (last time I did that!), long (past my shoulders) blond wavy hair with bangs like this (almost exactly, Renee and I could have been sisters!), corsage two baby red roses with baby's breath, my date TOM TYLER! I am pretty sure we went with Nikki E. and Jill G and their dates (who I can't remember). I think we ate at a surf and turf, and someone (not my date) ordered the Phillet Mihg Non (Filet Mignon).

I get through most of the dances and dresses, and nearly all of the dates (except the senior who asked me to prom my freshman year..he was a nice guy, a swimmer I think with beautiful surfer blonde red hair). I figure out halfway through my reminiscing that I went to every major dance, and most of the other ones; perhaps another way to know that I haver always had a nice little life.

Today I received an email from Gloria, my mom. It is a forward from the neighbor family I grew up next to. The older-sister's daughter was the flower girl in my wedding nearly ten years ago. The pictures attached to the email? They are from my flower girl's first high school formal. Whoomph. Wow. Okay. I was JUST there wasn't I? Apparently not.

At least I still have the faculty of recall eh?

So Are The Days of Our Lives

I received a birthday gift from Bridquet that was so thoughtful... so full of thought and effort that it may be up there with the most precious gifts I have ever been given.

On the right-hand side of this blog there is a little note, that has been on there since I started writing... something about the fact that for 15 minutes of each day I think that we are not going to make it... it is all too much, and I am no good at this job, and I am overwhelmed, and my body aches, and Jake is never going to be independent. I am not trying hard enough, and I have nothing more to give to my children and my marriage. I have lost myself. I am failing my special-needs child. I am not using the gifts God has given me. I have no faith. I am tired and there is nothing to serve my family for dinner. My house is a mess. My vocabulary is weak. My hair is thinning and has split ends. I never sing anymore and I am too quick to judge others. I have no patience. I am lost and it is all hopeless.
...and then minute sixteen comes and we are all going to be okay. Really okay. All of the previous moments are nearly erased (save for the aching back)...and we just move forward. We do our best; praying for great things and planning for the realities of our life. I am the strongest woman in the world, and possibly the luckiest.

Well Bridquet bought me a quarter-of-an-hourglass. It is beautiful and looks very much like the photo here. What is even more meaningful are the words she spoke to me..and I am paraphrasing.

For those 15 minutes it is like you are in the hourglass. Trapped and struggling, slipping bit by bit with nothing to grab on to, nothing to stand on. You are stumbling and falling and nearly buried alive. It feels like you will never get the right side up again.

and here is the part that was so kind

You are the sixteenth minute. You land upon the top of those grains of sand and you are grounded and standing tall and everything is under control. You are the sixteenth minute for your family. You are what makes it so it will all be okay again.

Why Can't I get Any Help Around Here?

Just got a call from school.

Jake may have had a seizure..probably it was weird yawn (since he has been awake since 3 am), but they called and told me that he arched his back and his eyes rolled a little bit, so having not seen it myself.. the Doc will get a call.

in other news from school:

Each morning kids in Jake's class have circle time. They walk to the board, select their name from the field of names and hand it to the teacher. Everyone cheers and says "Yay! You are at school!" or something like that. Jake does it too, and apparently chooses the correct name many times and is generally compliant and follows along and does it independently (his aide, Anna, stays in her seat).

This morning:
"Okay it's Jake's turn"
Jake gets up, walks halfway to the board (maybe a foot and a half). He stops and turns back around to his aide and SAYS
"Gubba,waging pho ewe ANNA!".

the 'Anna' was VERY, very clear.

So they talked a bit about how Jake needs to be independent, and while Anna is his 1:1 aide she cannot do everything for him etc.

Jake walks to the board, picks out his name, hands it to teacher Janice.

The class cheered for him.

He turns, walks back to his chair but does not sit down. Instead he stands in front of Anna and says:

"Iba goma AGHHY art Nog Mutton" (no one could decipher this one) in an angry tone, stomped his foot, threw his arms up and down a few times then

sat down quietly.

The kid has a few opinions apparently.

Being Present

We went up to SF today to see my family for the day before they head out of town on Monday morning. We sat through 40 minutes of traffic to go three blocks then we narrowly escaped being caught in the Veteran's Day Parade (thank you men and women for your courage and self-sacrifice).

We ate at one of the Ferry building restaurants and for some crazy reason I thought Descartes and I could walk with both kids to the Aquarium at Pier 39 and meet the rest of my family who would take the trolley car. Do you know that the Ferry Building is actually not even Pier One? It was 1.3 miles to our destination. Not actually that difficult, except for these reasons:

• Lucy hates her stroller
• Descartes and I walk at two completely different paces. I do the fast "retail" walk, and Descartes? Uhm he has a smooth well-paced "lumber". Believe me, in an emergency Descartes could walk the 50 miles to save our family, but everyday walking together has been first a "ha ha" joke between us, then a problem, and now something we 'manage'... in this case I walked ahead with Lucy.
  
• Lucy hates her stroller.
• I wore my awesome black boots with a heel, which can generally be worn all day long.
  
• Lucy's stroller is broken and no longer has the ability to buckle anything to anything.
• Lucy is only 17 months (today) and therefore cannot walk 1.3 miles in the wind along a busy street without at least having her hand held.

Okay so blah blah blah.. Lucy rode on my shoulders for 1.3 miles, then we did the whole touristy thing... then we walked back! I felt like I was doing that Avon walk again.

I have blisters on the bottoms of both of my feet from wear my socks rubbed. Descartes hurt his back somewhere along the way yesterday.

The point of all of this is that we did stuff that my kids enjoyed yesterday... with my parents. We went to a little Mexican restaurant that did not even have table service... we went to an aquarium...we sat outside by the water and drank smoothies. I think everyone enjoyed themselves too. It felt like we really were all present in the moment and there wasn't a lot of pretense or stress (aside from that initial traffic), or high highfalutin' something or other for me to panic over (you can dress us all up appropriately, but I have a kid with a disability and a toddler.. those two creatures don't exactly blend in at the club). It still wasn't a "natural" environment to show off my kids, but at this point what would that even look like? And it is hard to rest when you are fighting for a table at the wharf, but it was closer, sort of, to my parents spending time with Jake and Lucy that looks like Jake and Lucy being who they are.

I don't believe we should live our lives around our children. I think parents coddle their kids, and give in way too easily/early. I think parents lose themselves in parenting, sacrificing their marriages and neglecting their minds. I think that removing all sense of winning and losing so kids can have "great self esteem" is wrong and going to seriously back-fire on our nation in the next twenty years. Kids should learn to sit nicely at the table, and have great manners and deal with itchy ties and stiff shoes, and be able to "not speak unless spoken too" if necessary.

but...

I do think that kids are only small once. I am never having another baby. My parents are never having any more grandkids...okay , maybe one more? But not from me. It will be from my step-sister who we never see anyway. So this is it. Everyone's chance to make silly faces and read books to tiny people with little fingers who can't turn the pages well. This is it to see wonder and the world through the eyes of someone who has never seen it before. Lucy can already walk and talk. They only saw her twice before she could walk, so the 'baby' part is done. That's it.

So I guess I'm glad we all went to the aquarium yesterday so they could see Lucy touch a sea star for the first time, and see Jake watch the anchovies swim 'round and around (they still may have a chance to see this in the future though, eh?). I'm glad we spent more time sitting and drinking smoothies in the California fall sunshine than we did gazing over menus at a beautiful high-end-hotel brunch.

There will always be time for poached salmon and eggs Florentine...but Lucy is already done with her stroller.

You Can Just Tell

So I took both kids to the park this afternoon. They had a great time. Better yet, I had a great time, which means we are getting better at all of this. I am less fearful, and more playful.

I also figured out why Jake squats down in the middle of the water play area whether or not there is water on. He loves to squat and he is very good at it. Being very flexible helps. I can do it too. Hyperflexability sort of runs in my family. But here's the reason: when you are in the center of the water play area there is a sort of a focal point where all of the sound comes together. When he sits in that one spot he can hear the children playing in the sand box, in the water play area and on the swings all at the same time.

I never noticed before because I normally give Jake his space in the park, allowing him to roam safely away from me; for once not holding hands while outside.

Today I went over to him and bent down and covered him with myself, enveloping him in a hug, sort of just thankful for him, and I heard all of the sounds when I bent down. I never would have guessed a focal point would be there because there is only a half circle of cement around the water play area, and the wall is very low. This has been Jake's favorite place in the park since he could walk. It has taken me 5 years to figure out why. It makes me wonder what other amazing things he knows, and makes me want to run through every single one of his "odd" behaviors and figure out if there is a "reason" he does them.

The other part of our park story, aside from the little Gremlin Lucy enchanting a precious 3 year old boy and encouraging him to chase her all over the park, is that Lucy sat down next to a little boy and his nanny and asked nicely with a signed please for some of their snack. Thankfully they were more than happy to have her there.

When I joined them on the bench, the nanny asked "Does Jake like to sing?" (I had been using his name quite a bit encouraging Lucy to go hug her brother etc.).

I said, "Well, yes. When he is happy he makes singing noises."

and she said, "Yes, I cared for a boy just like him in the Philippines. I never understood the words, but he loved to sing."

I queried, "A boy 'like him'?"

and she said very plainly, "Yes, a boy with autism just like him."

"So you can just tell?"

"Yes."

The Stein is Sometimes Half Full.

It was Oktober Fest in Tahoe this weekend. Each year we go with my sister and her husband and now there are four children who tag along. It is very hard to push strollers and wheelchairs over pine needles, but the sausages are good, we all love sauerkraut and the beer selection is just lovely.

So last year, and the year before we just bought the giant mugs. .It is one of those deals where if you pay a little bit more you get the souvenir mug and all of your refills are more beer for much less money. It is the way to go if you are going to have more than one beer. Which we may or may not have done in the past. I am guessing we had more than one in years past.

This is the first year that I actually stood in line and thought about my purchase. I wanted to buy four mugs. I wanted to think that we were going to stay and hear the ooompa band and the yodeling competition and have several beers each and relax in the crisp air, soaking up September sun. I wanted to be optimistic. I want to be those people.

The reality is that the chances of any one of the adults finishing even one beer without needing to deal with a kid-related crisis is pretty slim. Jaster and Demanda have "twins" (the boys are 7 weeks apart from two different wombs) and we have our independent sprite Lucy and our unpredictable elf Jake. We are not the kind of crew that gets to sit still, be patient or relax.

So I compromised. We bought two mugs and two cups. I feel like this every day. In nearly every decision I make. I want to think that I can take my two children to the park, a park with no gates...uhm no. I want to think that the kids and I can stop in and get some milk at the grocery store and have it take only ten minutes. I want to go to the movies, go on vacations and go out to dinner with my children.

I struggle to find the balance; sometimes the optimist wins and I buy four souvenir mugs...sometimes we drink out of paper cups.

Jake's Birthday

Isn't he a beautiful boy? I know he isn't smiling in this picture, but he is looking at the camera. He was so relaxed during the whole party. He just took it all in. Relaxed is good. No panic attacks, no dropping to the ground in anger or frustration. He sat nicely next to his Papa, drank his milkshake(s) and I think, had a very nice time. I was able to make a Celebration Chocolate Cake and have it taste fine in spite of its not wanting to rise very well. We have amazing friends with hilarious kids. I think it went off well. Everyone got fed and most people were able to escape with their kids **just** before they melted down.
__________________

It has been a hard month for me. September is always very hard. We normally vacation at the end of August, so we are generally unprepared for the first days of school, and all of the anticipation of "the perfect trip to Hawaii" or wherever is now replaced with the more solid memory of how difficult it is to travel with our children. Then there are new shoes, and a new bus schedule (and a new driver), the weather is funky, some days cool, the next day 90 degrees, and I am always wearing sandals in the rain and knee-high boots in the heat.

September brings the feeling that I have once again left so many projects undone from the summer, that I have failed my kids because I didn't do more...museum hopping, pool play, picnicking, beach sand sifting or camping.

And then Jake's birthday is upon me, and I have no plans. No plans because my son doesn't remind me three times daily for a month that his birthday is coming, as so many other children his age will do. So his day sneaks up on me and then it is here, and I am smacked in the face with the fact that seven years have gone by. SEVEN years and this is where we are. And believe me, we are in a great, great place filled with new development and better eye contact, and wonderful things. But I apparently continue to think, somewhere in my mind, that Jake will be growing out of his --Autism, CP, ADHD, panic disorder-- any day now. So there I am on September 24th, a week before his birthday trying to shove all of my expectations back into the bag and tie it up again, more tightly than before, because it is so unfair to Jake, and to me.

So I tried very hard this year, though it was still last minute, to do something for Jake, and I did figure out that it is better to do something small and manageable, knowing that Jake might enjoy himself. Much better idea than spending a gazillion dollars on something where we may not have success. We got the little banquet room attached to his favorite burger and fry joint and invited some of the people we care so much about...some of the people who seem to care so much about us.

It was fantastic, and noisy, and filled with french fries and milkshakes. And I have now baked the cupcakes for Jake's party at school tomorrow. And tonight I will turn the calendar so that a fresh October page shines upon our wall.

Happy Birthday Tiny Man.