If

If I could, I would climb right out of my own skin and walk away.
Would I come back later? Maybe.
If I could, I would take this whole day and crumple it up in a ball and aim for the circular file.
Would I miss anything? Probably not.
If I could, I'd hop a train, plane, or hot air balloon and ride off to Tulsa to visit a brand new baby and smell his soft new skin and kiss his downy fluff.
Would I be nostalgic and longing?
Sure. And happy if.
If I could, I'd rewrite all the rules.
All selfishly. All fair.
If I could, I'd go back and start over and do it all better.
Would I mess up sometimes anyway? Without a doubt.
If I could, I'd sleep right now. But I can't. So I'm writing this instead.
If I can if, I will.
I if.
If you?

Monday Mumbers (for Kia)

My pal Kia inspires this, and when I have an extra brain cell I will link to her, because if you haven't read her yet, you're missing out.

8= Days we've given our son antibiotics, this go around
2= Days left of antibiotic
2,345 = times I've worried about how weird he acts on antibiotics
7000 = number of previous antibiotics
0 = likelihood that he'll stay infection free one week after the antibiotics ar done
46 = number of meltdowns Peaches had today, exhausted from her birthday Saturday
3 = how old Peaches is now
14 = how old Peaches acts
39 = how many hours today lasted
4 = number of hours of sleep I got last night
3 = number of hours of sleep I think I can count on tonight
8.5 = minimum number of hours of sleep I think I can survive on tomorrow
10 = how many kindergartens we've considered
0 = how many kindergartens seem like a good fit
102 = how many times Rooster has asked us to transform the motorcycle into a Spiderman today
102= how many times Rooster has asked us to transform the Spiderman into a motorcycle
4 = number of seconds he plays with the transformer before wanting it switched back again
8:57 = time for bed now (see 3 above)

Give Peace a Chance

Do all autism moms get asked if they think of themselves as a Mother Warrior?

I've been asked a few times, and I always find myself first experiencing an unwillingness to enter the fray. I don't really care about all the political drama, I just care about my son, and about the struggle of all families like ours. Why should I have to take sides?

But once I get past my discomfort with the question, with the controversy, the answer bubbles to the surface each time: No, for me, "warrior" does not resonate. This is not a political statement I'm making, this is me putting maybe too much stock in words, but needing to find just the right meaning if I'm going to describe my job as Rooster's mom in a metaphor.

I am not about war. Without sounding like I'm going to break into song or anything, what I've been searching for is peace -- for my child, for our family, for families like ours. I read today someone who said that we are all on a spectrum of autism -- no one is entirely without some of the traits that qualify someone for the diagnosis. That did resonate for me. I don't want to war with the parts of my son that are autistic. I want to help him make peace with himself and the world. That is hard, because my son is a fighter. But I don't want to be that kind of fighter.

Yes, we try biomedical interventions, and medical interventions. We aren't looking for a "cure," I am looking for peace. Our whole family needs more peace, less war; more hugging, less fighting.

I admire warriors, both in the literal sense and in the autism metaphor. I admire people willing to fight for their country, their beliefs, or their values, when fighting is necessary. I'm Jewish -- surely in WWII I would have been a warrior. Perhaps if I couldn't reach my son at all I'd be at war with what kept us apart. He is a willful, challenging little boy, but he is right here, with us, and I connect with him every day with love.

So I'm not at war here at Rooster Calls. But I am out in a field of land mines.

I do like metaphors.

And so I decided that before I could write about why I'm not a warrior, I had to find the metaphor that fits for me. And I have. And I'll tell you what I am... will you return the favor and tell me what you are? (My pal Kia would call this your homework, but I'm a teacher and I find that word kind of a downer, so I'll call it your mission, should you choose to accept it.) I'd love some comments about your metaphors.

As lame as it might sound, I think of myself as Sherpa. Sure, laugh. Autism Sherpa would never sell a book, I know it. But for me the metaphor means that I have to navigate difficult terrain with the responsibility of getting my party safely to a remote destination, and few others are qualified to carry the load against such natural and unnatural barriers along the way. I chart our courses, pack our loads, set a pace, and haul a**. I encourage the team to keep up, and I try to keep us all together. The thing is that real Sherpa have done it many times, guiding their charges up Mount Everest. I have never done this autism expedition before, and I don't have a great sense of direction. But all Sherpa had to start somewhere, right? I'm an Autism Sherpa novice, I guess. Many of you are my Sherpa trainers. Thanks for helping me find my way.

Now, I'm looking forward to those comments...

G is for Guilt

The guilt I feel often comes from unexpected places.

You might expect, for instance, pangs of remorse when I am moody or grumpy, but sometimes I can harumph around without a bit of guilt about it, full of myself. Today I should have felt guilty when I lied and told Peaches I would cancel her birthday party if she didn't go to bed and stay there, but instead I just felt relieved when it worked.

Really, the guilt comes during happier moments. This is hard to admit.

Sometimes I feel like an impostor, and I feel happy, and I feel guilty.

Today, for instance. The rooster stayed home sick, and so did his dad. Rooster is getting over a strep / sinus infection, and his dad might have an infection too -- his allergy to doctors prevents us from knowing (my diagnosis). So, Peaches and I had a RARE opportunity to go out after school, just us girls, before heading home. A kids' boutique only blocks from our house has its annual sale right now, so we hit the half price rack and scored ourselves a great pop-up princess palace for the backyard to use at her little party this weekend. We cheered when we found it, we held hands when we bought it, we chatted as we walked down the street, and she, without her brother around, behaved like the model child for many minutes. I even dared to take her afterward to a store for grownups two doors down -- a beauty supply place -- where I purchased conditioner and she flirted with the proprietor, who offered me a lollipop to give her (out of her earshot, thank goodness, as I said NO). All the while, I had this feeling Peaches and I ought to confess... "We aren't real happy people," I thought we should admit, "and our family isn't typical. We are just pretending. Don't expect we'll ever be here like this again, because we won't; the clock is about to strike twelve and we'll be pumpkins again."

Hey, I have confessed worse things here, but I wouldn't blame you if this gave you the worst impression yet of me. My heart, my brain, and my soul don't always listen to each other.

But by admitting it, I can learn from myself, work on myself. Today, I felt guilty because it was good to be just two NT chicas shopping at the sale rack. And I felt guilty because I was happy, and guilty because it was only a surface happy, and guilty because I'm not happier, and guilty because I waste too much time on guilt.

I love my son. As is. So big. Forever. But I'm not always good at being his mom. And the guilt about that gets to me sometimes.

Water, Water Everywhere

Sorry, this is another shameless teacher intrusion alert: I'm not here to write about autism today. I am here on behalf of some third graders thirsting for knowledge. They are learning about water shortages, and they generated a list of questions that I'm posting below in case any of you happen to know any ... uh ... water experts. A longshot, but it never hurts to try.

If you ... or a water, uh, expert ... can help us out, just post here OR email ghkcole at yahoo dot com. Our focus is on understanding the environmental problem of water shortages and thinking about how the community can come together to make things better. Heady stuff in our third grade.

Third Grade Wants to Know...
How can we tell if water is polluted or usable?
Are we doing something in increase the water pollution problem?
Where do people face water shortages?
How do you clean water?
What problems do we have with water that are not about pollution?
Is there enough water for everybody?
What is the difference between filtered and tap water?
What would happen if we ran out of water?
Is our water in the United States cleaner than in other countries?
Who can help us solve water shortage problems?
Will we ever run out of water?
How can we conserve water?
What will happen if we take water out of the ocean and try to use it?
What convinces people not to waste water?
How can we use water efficiently?
How can we stop pollution?
What can we learn from the water problems and solutions of past cultures to help us solve our water problems?

Scrambled

Ten reasons why playing Scramble is preferable to everything/anything else in my life, in no particular order:

1. It only takes three minutes, and then I get to start over.
2. All the answers are revealed at the end of the game.
3. To find the meaning of anything, you just have to click on it.
4. I get to play it all by myself. Quiet, solitary, uninterrupted clicking.
5. After each round, praise appears.
6. With the click of the space bar, I can rearrange everything.
7. It is fun and free.
8. I only do it for me.
9. I understand the rules.
10. I have amused myself by unscrambling these words: penis, shat, turd, urinate, diapers, curses; I have yet to stumble across the word autism.

Enigmas Wrapped in Mysteries

So, we're considering Ritalin over here in Rooster Country. Just at the considering phase, welcoming any and all input.

(sigh)

Typical? NOT.

Our day was typical, which is to say it was full of unusualness. The content of the unusualness ever-changes, but you can count on each day to have its share.

So today I thought I'd share a Typical (not) Day in the Life of a Roostery Family, tentatively subtitled Fun (not) with HFA in LaLa Land.

Today we arrived at school, dropped of Peaches in her classroom, and ran across the street for OT at the public school we hope the Rooster will be able to attend in the fall if Open Enrollment and the IEP work out right. Our new OT person seems wonderful; he provides an additional 30 minutes on top of the hour Rooster gets from Fabulous Miss O each week. He did a great job today in spite of the Rooster seeming off to me, and I am loathe to stereotype, judge or in anyway harsh on Mr. OT. I will say, though, that he is full of character, unusual unto himself, and worthy of his own future post. He fits in fine in this tale of the Usual Unusual in Hollyweird. Oooh, maybe that's a better title...

After crossing the street and returning the Rooster to his classroom, I paused for a moment to think of how a web site I read yesterday had described our school: Liberals with Limousines. Now, I'm prone to balk at that stereotype, but today I had to laugh. Today my school hosted a function for a group of our kids as well as kids from a public school substantially lacking resources. The person responsible for the day was... well, I shouldn't say. I will say this: she not only rocks, but she rocked heavily in the 80s, during my teen years, and in fact could be described as an 80s rock icon. She and her people had a project idea to bring together these kids to write a song, and to have each child write a letter to our president. My job? To help with the writing lesson, assist with the technology, and shoot some photos. Good stuff. Really, if you combine writing, technology, kids, hope, change, collaboration, and community building into one soup, I'd gorge myself on it if I could. It seemed to GO. It seemed to WORK. Plus, a writer I revere came out to cover the event, and I got so flustered I couldn't get my hands to stop shaking long enough to get the lens cap off my camera. Three hours into it, I had a lunch break, and I went to check my email.

The Rooster's teachers felt, too, that he was "off." He had been cycling through moods, acting out, crying, and misbehaving, and he needed to go home.

I picked up the boy, confabbed with teachers, had him checked over my our excellent school nurse, and called my husband for ideas. Taking Rooster home didn't seem an ideal option yet; Peaches still was at school, taking her nap, and it's a schlep. J doesn't work too far away, so he said we should come meet him for a late lunch to figure out our next move.

At lunch, the Rooster had some tummy issues. Aha, we figured. Mystery solved? A trip to the loo and some good healthy food later, he seemed better. Sorry if that's TMI.

I loaded the Rooster back in the car planning to drive him and let him sleep it off, then pick up Peaches after nap time. We kissed my husband, and he headed back to work, trying to make a deadline.

Ten minutes later my husband calls me. Deadline, schmedline. The skyscraper he works in needs everyone out -- as do the nearby buildings -- on orders of the Secret Service, because the president is on his way to the neighborhood. J sweetly offers to come get the Rooster to give me a few minutes to myself before I need to get Peaches. By now the Rooster is out cold, though, so I whisper our location to my husband, who comes and finds us, and we switch cars.

I head to Whole Paycheck...er, Whole Foods, and get one bag of gfcf bounty for something in the vicinity of a C note. Queasy at the price, I head back to school for the fourth time of the day to get Peaches. My friend/soul sister tells admits that the day with rock idol culminated with an amazing singing performance by the children and the rocker, and too bad I missed it all, but thankfully someone got it all on video.

This was not a bad day. In fact, I kind of liked this day, and my husband is home early, so the night doesn't stink either. I even get to blog BEFORE bed time. But I'm dizzy from it all, really.

And tomorrow is lather, rinse, repeat, but most likely minus rock stars and presidents.

Ah, well.

The Good, The Bad, and the Monday

Quotables:
Me: Rooster, do you like your hornet shirt?
Rooster: Yeah, it's cool.
Do you know what letter h-h-h-hornet starts with?"
Rooster: YES!
Me: What letter?
Rooster: Bee!

Rooster to Peaches: Peaches, do you want to be my best pal?
Peaches: Yes! Do you want to be my best pal too?
Rooster: OKAY!

Peaches to me: When will I get blue eyes so I can look exactly like you?

Teacher: Last week when I asked Peaches where the rooster was since he was not at school, she said, "Rooster is at home with my mother's husband!"


The Good:
I found more GFCF sources for "treats." They don't all taste like sand, either. Maybe that is why they cost as much as an entire aisle of cookies at Costco. It made me smile to see Rooster and Peaches sharing them happily.

One of my best friends bought a surprise for Peaches for her upcoming third birthday party: a fairy princess costume, in her favorite shade of pink. She's going to love it.

Another of my best friends is about to adopt a baby, following many years of working toward growing her family. She expects his birth to take place April 6, and I have her and her husband in my thoughts every minute.

I actually went out for a little while Saturday night, attending about 90 minutes of a wine tasting party thrown by a wonderful woman I met at a mom's group right after I had the Rooster. I almost didn't go, for many reasons (having left the group long ago, feeling out of place since I don't drink, knowing I'd get there later than everyone since I need to tuck in the kids, looking horrible with my pink eye, sounding horrible with my cough...) but I am so glad she urged me to attend. I had a lovely time talking with women about food, weddings, travel abroad, everyone's careers... lots of stuff other than kids. And when autism came up, I felt so supported and encouraged. I hope I will maintain this reestablished connection. It fed my soul. It felt like blogging, only I couldn't wear pajamas.

My pink eye is nearly cleared up. My cough sounds less ominous.

Tomorrow is Tuesday.

The bad:
Monday.

You know, I think Monday sucks at our house quite differently than it does at the homes of many of our friends and neighbors. Really, I look forward to going back to work. I dread Saturdays more than Mondays in a lot of ways. And yes, I hate how that sounds, and no, I do not want to spend my time away from my children, and I adore my children. But Saturdays are bills and chores, too many cartoons, speech therapy, unstructured time, fighting, "shoulds", and exhaustion from the week. Sundays are often a little better, and sometimes I even like my Sundays, especially when no one goes to the ER or has pink eye or anything. Mondays suck because they are the called-on-the-carpet time for what I did not accomplish all weekend despite feeling like I worked pretty (expletive deleted) hard. Didn't buy enough gfcf groceries in my three market runs for all the necessary school lunches and snacks? UH OH. Didn't fill out the sheaf of paperwork for school for the kids? OH NO. Didn't fill up the gas tank or stop at the atm? Run on fumes and skip lunch, because the children don't tolerate extra delays on the commute. Mondays mean I carry two giant sacks of goods to school: the changes of clothes, the diapers, the wipes, the snacks, the lunches, the required backpack, the clean blanket, the clean sippy cups, and hopefully my purse. Mondays the rooster has OT before school, so either my husband or I will be late for work. Mondays the rooster's shadow usually "doesn't feel well" and I can expect to scramble for a sub. Mondays the rooster doesn't transition all that well so I brace for the report. Mondays my colleagues tell me about their weekend adventures and lament coming back to work, but the good news for me on Mondays is I don't miss the weekends much.

Today I spent my lunch checking out another option for a school I'd heard about. I must have misheard, though. This school is a NPA, and it offers class 8-12:30 M-F in an old, run down church building in Koreatown for $25,000 a year. That does include OT and speech. That does NOT include the fee you pay to attend the mandatory parent meetings every Wednesday from 8:45-10, to sit with other parents and a psychiatrist and observe the children on a web cam. That costs $5000 more. Yet, that adds up to $30,000, a nanny, and a s***load of time away from work, 20 minutes away. Scratch it off the list.

So, that's the good, the bad, and the Monday over here. How about you?

ultraSounds crazy?

I stumbled on a story that a researcher believes too many ultrasounds can cause autism. So, forgive me if the question offends you, but what is your experience, thought, reaction, story?

All I know is I had numerous ultrasounds with the rooster, and very few with Peaches.

Shame on You

Dear ghkcole,

I've had it with you. This morning I thought I'd write a pissed off letter to the president, but you know what? You make me angrier than his education "plan." After all, at least he's hopeful, working hard to make change, and tackling big stuff (albeit misguidedly with a woefully ignorant idea about standardized testing and teacher "rewards"). You, on the other hand:
1. break your promises 2. dwell on the negative, showing little or no sense of perspective 3. are mean. Someone needs to put you in your place.

Let's start with those promises, shall we? Perhaps you might recall early fall of 2003. I know I do. You were pregnant, and you had some spotting. You negotiated passionately with the universe: if you could just have a healthy baby, you would do ANYTHING, accept anything, work so hard... well, you got a healthy baby. Yes, maybe he grew into a child with autism, (possibly due to either choices you made -- the article on the risk of too many ultrasounds struck a nerve, no? -- or through your own genetics that you've always known to be suspect) but you have a child who can enjoy the world in his own ways. And do you try to enjoy him as much as you should? No. You got what you asked for, and you didn't live up to your end of the bargain. And do you remember the next fall? When a beautiful little girl you loved from a family you love left us all forever? And you promised to always cherish your family, to make the most of every day, to appreciate what you have? PROMISE BREAKER. I know you remember these things, but you sure don't act like it, do you, Mrs. Pity Party?

This dwelling thing -- OH, don't get me STARTED. I am so FURIOUS with you. This morning your little boy woke up, came to you, and pulled you down the hall, saying, "Mommy, come check out my room." You, in your typical fashion, asked what thing he'd done to his room, assuming catastrophe. Instead, when he opened his still dark room to show you the constellations all around from the two night lights he put on together for the first time ever, you had the best morning surprise ever. When he pulled you down into his bean bag chair, you should have felt enough goodness to get you through MOUNDS of crap later in the day, even the week, the month. A morning under the stars with your beautiful child should have put enough in your stamina bank at least to cancel out the calls to and from schools and ists, the kids melting down at the end of the long day, and the bumpy ride home. That is, it should have been enough for a good mom. You, however, were just MEAN, and that brings us to my third point.

Since when have you EVER thought it okay to mutter under your breath negativity about your children in their presence? And do you really think it's okay to have contempt in your voice when your child struggles with potty training problems? Let me tell you this so maybe you get it, toots: He. Has. Autism. Yes, he knows how to use the toilet, but that doesn't mean you can expect him to just do it. This could take a mighty long time, and longer if you keep failing the way you did today. Autism, babe, deal with it. It is what it is. It might be someone's fault or no one's fault or society's fault, but surely, surely, surely it is not your child's fault, and when you freak out over this toilet business, it not only does not help him, it probably HURTS him. Chill OUT, and fast. Or I am going to stop being your best friend. And let's face it, you need me.

Sincerely,
ghkcole

Let's Say

Let's just say you need to work, financially speaking, and for your sanity, your insurance, your general well being. Let's say you're a teacher.

Okay, now let's say you have two kids. Maybe one is on the spectrum and one not.

So, your child on the spectrum tried going to the school where you work, and it didn't work out. He needs to find a place to go. Where do you send him?

Do you try to send him to the highly rated public school across the street from where you work, where he can get OT and inclusion services through pull-outs? If this sounds ideal to you, geographically, bear in mind: this is not your home school district, so your child can only attend this school as a work permit child, since you work across the street, or through open enrollment, and these stipulations mean he must be in general ed in order to qualify. BUT, you seriously doubt that your child will make it in general ed kindergarten due to his behavior issues, though cognitively he might be fine. AND, let's say your child isn't potty trained yet, but he better be in the next three months if you plan for him to go to this school. If he is tossed out, it means special ed, at the school near your home, as long as they still have the space.

Ah, the school near your home. Do you send him there? It is only about a mile down the road, has special day classes, and he is very unlikely to be thrown out there. You know this is what the pre-k supervisor will offer at your IEP. BUT, this school is very poorly rated by the state. Few of the children speak English as their first language, and your son has lots of language issues. And, let's say you have a neighbor across the street with a child on the spectrum the same age who said she would send her boy there "over my dead body." This school is at least 35 minutes from your work, farther from your husband's, and you will need a nanny for after school until you get home from work.

Let's say there is an amazing charter school that would be a wonderful compromise. It's an inclusion center, dedicated to a mix of typical kids and those on the spectrum. Let's say you get in on the lottery to go there, BUT while you cross your fingers for acceptance, you also doubt you could figure out how to get your child there and back safely and still work, as this dreamy school you're not even in yet is close to an hour north of work for you and your husband. Let's say they also expect lots of parent involvement at this faraway campus.

Okay, I know, you think, I'd look for more options. Good! Good!

Let's say you search high, low, all over. Let's say one person you respect suggests a non-public agency that they think would be a great match. It costs a minimum of $25,000 a year, and you still need the nanny for an hour or two after school. But the next highly respected person you ask about it says, "No, I'm kind of ambivalent about that place, and I think you should look at this other place."

Let's say that other place is one with a web site, so you look it up and this $40,000 school is for emotionally disturbed kids. Let's say you have never had a diagnosis suggested of Emotionally Disturbed for your four year old yet, and this school suggestion gets you thinking. You start asking all the ists and experts and people who know your child what they think of him and his school readiness. Let's say you get a very mixed bag of comments, maybe something along these lines:

"Whatever he is, it's mild. The diagnosis is autism, but it's high functioning. He's come along way. Sure he scratches kids sometimes, but four-year-olds do that even when they are typical. He's mild!"

"He's not going to make it in general ed. He is going to scratch a kid or two and he's going to get sent out. Then, what do you do? Back to square one, and with more transitions."

"I don't want to see him in a situation where he's the very best of the bunch, because we've seen he doesn't do well like that. We have seen that he does best with good models around. Look how far he's come in a mainstream setting! He needs the least restrictive environment, but one where it requires the least correction."

"You can't possibly send him to school on a van far away! Can you picture that? No way!"

Let's say every where you turn people suggest you get a lawyer. Let's say you and your husband talk it over, and you think you can find the money and time if necessary to get a lawyer. What exactly is it you want the lawyer to do?

This is really my question. A serious one. Let's say this is your child. Let's say you are willing to do whatever it takes to get him into any of these schools, whichever is best for him. Where do you want your child to go to kindergarten? What is the right place for your verbal, affectionate, irritable, impulsive, beautiful, immuno-challenged, GFCF eating, hard-to-transport, moody, sometimes aggressive, well-loved, word-salad-talking, spectrum kindergartner?

Play Date

Dear Special Needs Blogging Mamas Who Comment Here***,

Hypothetically... or maybe not...

Do you want to come over? We could have dinner, talk about parenting or maybe not... but definitely the dinner. And we could share strategies for dealing with special needs... or maybe not... but we probably could have wine, and laugh, and maybe do a quick write, or tell jokes...It could maybe be a sleepover, like Jess', or not... but I am curious, though?

Hypothetically, is June 20 good for you to hang out with me in SoCal?

***Please, those of you who are not special needs blogging mamas, do not feel offended or excluded. I send you a big hug. We can have dinner, too. :-)

To Blog or Not to Blog

When I started blogging, I wrote about everything that went wrong, every problem, every pain. It helped.

Now, when I am quiet, you know things are bad. I can't seem to bring myself to serve it all up in its gruesomeness. When I do, it doesn't help. Now I write for different reasons -- mostly to stay connected to the people who have helped me through the pains and the problems, who have helped so much.

Why? What changed? Is this good news or bad news? Am I better or worse?

And I am curious about you... when do you blog? And when you do, does it help?

P is for Package

Dear PH,
Why on earth am I writing you a thank you note in my blog?
Well, for one thing, I hope it surprises you when you see it, and makes you smile, the way you surprised me with a smile today.
For another, I want to let everyone who reads this know how powerful it is to get a special surprise from someone you treasure. Thank you so much for being my friend, P.
Today when I got home, I dragged through the door, hauling two heavy bags of kid stuff and the mail that I snatched from the box just before my kids closed the front door on my arm. It had been another rough one. Then among the bills and catalogs I saw your package. I tore it open before I even set down all the detritus of the day.
Well, first of all, your gift is so adorable that just looking at it made me smile right away. And of course instantly I knew you made it, and thinking about that my eyes went right toward the quilt you gave us when we got married. You meant it as a picnic blanket, but for us it's an everything blanket. Every time I'm sick, it's the first thing I want. When it's cozy cuddle up time with the kids, that quilt is always shared among us. The kids feel it -- that blanket is love. I must fold it a hundred times each week.

Now I have my special pillow case you made me. The kids, of course, made a grab for it, but I was faster... this one, I told them, is MINE!
Then, I read your note. Well, I read it about six times. I read it aloud to J, and of course my voice cracked all over the place and I had to wipe my eyes. I don't know which part makes me feel more special and appreciative -- that your gift to me was the first thing you made on your quilting weekend, or that you said you made it just to make me smile.

P, I hate that we live so far apart, and that your kids and I don't know each other. But I treasure knowing that distance doesn't change the connection I feel to you.

I get sad and lonely over here, but it helps to know you are out there and you care about me. I love you, and I miss you, and I thank you from the bottom of my heart for the world's happiest froggy pillow case. How could anyone ever curl up with it and not feel comforted?

I wish I had a talent; I'd make you something special, too.
I send you lots and lots of love.
G

I Confess

I am going to confess something to you, and I admit I'm worried how you will react. In fact, I play it through in my mind, imagining all the outcomes, full of fear and guilt and anxiety.

Here are some reactions you have in my mind in the various scenarios I play out:

A. Oh, for God's sake, ghkcole you are so pathetic. Get a grip. Enough already. I am taking you off my reader. Sheeeeeeeeesh. Whine, whine, whine. You big stupid baby.

B. Ghkcole, stop being so naive. Duh. That's life. Grow up.

C. I am calling social services to find a better home for your children, missy. They deserve better. I could do better for them with my blog tied behind my back.

D. Welcome to my world. Life for me ain't been no crystal stair, you know. Come walk a mile in my shoes and you'll learn a thing or two, dummy.

E. Oh, well, we knew that already. I mean, that much is obvious. Next?

F. For a while, I liked you, ghkcole. I thought I could relate. But you know what? I am nothing like you, and I'm really glad.

Okay, before I am consumed by this imagining, I need to be done with it and get it off my chest.

The thing is this: I really don't enjoy my children these days. I love them, deeply, every second, and I think I show that, but I'm not having fun with their childhood. I spend large swaths of time wishing to get to the next thing, futilely. I adored my newborns. And then I couldn't wait until we got some sleep. I'm still waiting. I thought I'd feel better, happier, if we could get them to play together and entertain each other sometimes for a bit. Still waiting. I thought I'd find everything a little less arduous when they got potty trained. Still waiting. I thought maybe when either of them could be trusted to play out of site of us, say in the next room, then I could enjoy some one-on-one time with the other. Still waiting.

So I still spend every minute of time that I am with them in constant, endless, management, trying to please, appease, predict, prevent, mitigate, comfort, heal, beg, urge, endure. And I don't like it. Most of my life feels like one giant chore. Carefree fun and special conversations and endearing moments don't come along nearly the way I'd expected. I'm not finding their childhood any more pleasant than my own, which totally sucked.

I hate that this is true, and I know you think I suck and that I'm doing it all wrong, seeing it all wrong. I watched two moms with one year olds talking in the hall today. They looked how I never have. They knowingly held their happy babes while managing a complex conversation with one another. I've spent five years in fight or flight mode, and now I look back and can't figure what I missed or how I missed it, and even sadder I realize I'd probably be willing to miss a bit more if we could just fast forward to a time, if there ever could be one, when my kids are still kids and I enjoy them both.

So, which letter are you feeling toward my confessional?
I expect some people will feel as disgusted toward me as they are to that bachelor guy who asked for his ring back.

Ists

When the Rooster was only a few months old, one day I suddenly realized he kept looking to one side. When it dawned on me that he refused to turn his head in the other direction, the alarm bells in my head nearly made me drop him. WHAT? Just one word... countless implications. WHAT? WHAT? I ran frantically around the house as that word spun this way and that through my head.

The pediatrician saw us and told me not to worry about the new word in our vocabulary: torticollis. He told me, No Big Deal. I wish I had fired him then and there. Instead, I tried to believe him when he told me that physical therapy for babies was a racket, a waste of time and money, and that we could help our baby all by ourselves.

When I came to my senses and listened to my intuition a few weeks later, the rooster began therapy for the first time, and we began our very long journey toward the kind of help our boy really needs. We have moved twice since then, and changed resource providers and had a jillion ists, but sometimes I wonder if those early helpers suspected what we now know.

What I want to write about tonight is how good it is to get the RIGHT help for your kid. When it fits, you feel it. When it doesn't, you feel the absence, the void, the lack.

One thing I KNOW for sure from firsthand experience: one good physical therapist or occupational therapist does more good for our son than a hundred of our first pediatrician.

We have had many good therapists, and we watch with our own eyes as they help our son grow, change, develop, improve.

Every Monday since the school year started, the rooster goes to OT in one of our district's large therapy rooms. For many months now, he has worked with Miss O. When I first met her, she was just ist number 96 to me, and I wouldn't have minded if she smiled occasionally. J and I took turns taking the rooster to all his appointments, and often OT fell on J's turns, while I ended up more often at the pediatrician appointments or the developmental pediatrician's office. I asked J, "How do you think the rooster is doing in OT with Miss O?" He said, "She's STRICT." I often think of that word more positively than J does, I being the teacher, and J being somewhat allergic to authority. But I took the rooster to OT one day and found myself thinking, "She is so hard on him! She doesn't understand how hard it is for the rooster."

Well, of course she did. She is an OT. She knows exactly how hard it is for him. She knows so much more than I gave her credit for, and I have been thinking a lot about this. I think the reason I didn't give her more credit is because at first I assumed she didn't have kids of her own. Miss O has quite the baby face. I would kill to look as much younger than I am as Miss O does; I found out recently that she has a child of her own, and that if anyone underestimated another person's challenges, then I am the guilty one. Miss O has a baby born with special needs, too. Maybe it's completely unfair of me, but it definitely increases my trust of her and how she works with my son. I want Miss O's daughter to gain strength and be well and succeed, and I wish she had not been handed the challenges she has, but she definitely has the right mama. Because Miss O IS strict. She doesn't have a ready smile, she demands compliance, she gives consequences, and she sets high goals. If it's hard? Good. Do it again. If a little boy whines or shouts, she stares him down, frowns and says, "Excuse me, that's not okay," and that little boy gets redirection with a firm hand, and time outs as needed. But you know what? Miss O got the rooster to put on his own shoes. Miss O got the rooster to cut paper in a straight line. Miss O convinced the rooster he'd be able to climb. Miss O helped us realize the problems that the rooster's flat feet caused. Miss O looked over the rooster's IEP and realized we didn't get certain hours we'd be promised, and she made it happen. Miss O made sure we could extend the rooster's hours when he needed more. And when the rooster managed to get his shoes and his socks on all by himself today? She did indeed smile.

I am bothered by my bias toward doctors and ists with kids, especially toward people with special needs kids, and I want to work hard to remember that everyone has a story... everyone brings something to the table...
But at the same time, knowing that Miss O has taken her seat on both sides of the ist desk gives me a sense of confidence in her empathy, a feeling of kinship, and less of that bitter reflex to say, "You don't know what it's like..."

I've written many times about my fantasy dinner party attended by the special needs blogosphere mamas who inspire and support me, and now that it seems some version might really become a reality sometime, I have embellished the fantasy in my mind, and I've added a seat at the table for Miss O. I will lift my glass to her and thank her for being strict and for helping my rooster. Then I'll try to talk her into writing her very own blog. You will love her. She has a really beautiful smile, even if she does save it up for special occasions.

Sonday

Tonight I got so frustrated with my children that I yelled at them through teeth tightly gritted. How tightly gritted? I chipped a tooth.

For some reason, this makes me INORDINATELY sad.

ALL CAPS WORTHY sad.