Is the Gate Locked?

check. double-check

We don't ever really relax. We think we do. We get babysitters and go out for drinks with friends. We take turns keeping an eye on Jake, but really there are only five days a year I do not worry about my son: the 'week' he goes to camp. Other than that, my mind, and quite often my body,  is on duty twenty-four hour a day. Part of that responsibility is just what it feels like to be a parent, but I've seen other parents with typical kids, and I see how they can let go of their child's hand in the store, leave the car door or window unlocked, leave the back gate without double-checking the double-lock. They can expect that their child is not going to shimmy through the dog door, and just about disappear in silence.

But there are places that are easier than others. Places where I can let my guard down a little bit, because I either have the safety in numbers of responsible adults, or a well-enclosed space, or just one other person who completely gets my kid, and can recognize things that will be dangerous even if they look safe for another special needs kid.

Our house is one of those places, and thankfully we own our home and can make improvements and adjustments to the walls, and fences without asking any one's permission. Our home is safe, but not without some very serious rules, and a lot of attention to detail. If you come to a closed door or gate in my house...there's a reason, and it's probably not because I don't want you to see me naked. If you make a mistake and leave even one gate or door open, there could be consequences that range from, dirty shoes on the bed (so don't care), to a child covered in dog poop (completely annoying), to a boy who has wandered past the driveway (very worrisome, and I can guarantee that I will cry when we find him), and of course, there's death, because we really can't be sure of Jake's safety awareness, and it's not like he is just going to come back on his own, unless he decides to return through that open gate. Lucy just turned five, but after a pre-teen visitor to the house left the back gate open, I told her that no matter who comes in behind her, even if it is a grown up, it was her responsibility to make sure the gate is locked after any time she passes through it. She gets it, and has done it without complaint, but the amount of responsibility we must place on her is nearly unbearable to me.

Mt. Tallac at sunset.

Tahoe is a safe place for Jake. My sister and her husband, and their children all look out for him, know his abilities, and know when he is not okay by the tone of his vocalizations. The backyard is large and gated and filled with toys and tan bark and a trampoline where the little kids entertain him with their bouncing, twirling and bickering. I know that Jake cannot escape from the backyard, so when Demanda and Jaster clean up the entire place for Jake (thank you thank you thank you), all we need to do is periodic checking for dog poop, which you would do for any bunch of kids playing. With everything taken care of, we can sit on the upper deck, all four children within our view. With nice weather and a frosty beverage this almost looks like relaxing.

And even luckier, I have a few friends who either have Jake-safe homes all the time, or who care about his safety enough to change things while we are there. One family has cleaned up a dirt area and put in palm-sized rocks for Jake to tumble, and ensures that the pool gate is locked at all times, and another has a big front yard that is fenced and filled with dogs and kids who will not let him go out the front gate. We have still more friends who try, in every way, to make their houses a place where we can bring our entire family, by checking gates and keeping the front door closed, even when it's an Open House.

But as much as I really do not want my child to be injured, there is another part of him being safe in our home, in our extended-families' homes, and our friends' homes which may be even more important; it's acceptance. Acceptance cannot be nailed into a wall, or double-locked. Creating an environment of acceptance is not as easy as just sweeping up.

Acceptance is knowing that my son might trample your new grass, or steal the top soil out of your planter, and inviting him to play nearby them anyway. It's not really keeping track of the number of little things he's swiped off your counter, and hidden or broken. And not being too bothered by the copious amount of food that always seem to be at my child's feet. It's inviting a child, my child, with 'toileting issues' to come swimming anyway. It's believing my son has something to say. And it's forgiving me when I can't clean up our debris and dishes because we "have to go RIGHT NOW."

It's inviting us over at all.

And it's inviting us back.

I am thankful.

****

a version of this post was an editor's pick today at OpenSalon.com

Venting Frustration: Mental Health

I think Jake might need to go back on a medication to help him concentrate at school, and be able to sit down for dinner, which he can no longer do unless he is in his wheelchair. He stopped taking the previous meds in the fall, after several weeks of behavior that did not dictate further use of the medication, but before the next round of school I think he should be evaluated... so I put in a request with his psychiatrist at the medical foundation we visit; a place about which I usually have lots of good things to say.

In response to my request for a morning appointment any time between now and the end of ages, I got an email back, saying that since it had been over a year we needed to contact the Intake Coordinator via the website or by phone. The visit to their website didn't take me any further in the process.

So I called them, and was told that we need to do a "patient intake."

Fantastic! She asked for all of our insurance information, and verified our billing address, and my husband's ID numbers. And I got to hear about how the doctor we've seen for five years is going to be an out-of-pocket expense, and of course I know that because it is very expensive to go to an out-of-network doctor; but he is worth it. This guy knows his stuff, and more importantly he knows my kid.

But wait!  As it turns out, Jake's 'regular' doctor is no longer accepting 'new patients' because we are now considered a new patient. I can call back in three weeks and see if he has opened his practice to 'new patients', and continue the intake process. Even though we have seen this doctor six or seven times in the last five years (more than he's seen his dentist or his neurologist), we get to start over.

Oh, and because we are a new patient we get to pay over $500 for a 1-1 1/2 hour parent/child visit, then several hundred more for a 45 minute patient only visit... good luck with that one. And as a reminder, I may not leave a child under the age of 13 unsupervised in the waiting room. Acknowledged.

And, this was just the first phone call before I can even schedule that appointment. Next comes the call from the other half of intake coordination... asking all of the medical history part, except it might be a short call since he's been seen here already. Well that's nice.

So are we a new patient? A kind of medium-old patient? We're like a 'restored' patient maybe? We saw the doctor 20 months ago. If I had made an appointment 8 months ago.. just to "check in", even though we didn't really need to,  it would have cost us $150, and we could just make another appointment with him now for another $150.

This is not about the money for me really though. I am just sad and frustrated, because dammit this life is hard enough already.... why else would I be calling them? At what point in this process are they taking care of the mental health of my child (or me for that matter?) How many phone calls before I can schedule an appointment? How many hoops?

But let this be a public service announcement: If you want to keep seeing your very-important-to-your-health doctor when you need to, ask what their policy is on how often you must be seen to remain an active client. If the doctor has a wait list, chances are they have some awesome policy like this one. Let me tell you how much I wish I had just sent them $150 bucks last year.

Okay then. I cannot take care of this any more today or my head will pop off. I already said the f-word in a conversation with my parents, so that tells ya where I am with it all.

and now I will return to my regularly scheduled packing for a wonderful weekend in Tahoe. We will be adding brandy to the sangria tonight. Have a lovely weekend friends.

*********

an update: the office staff called me Friday afternoon late and we decided she would contact the doctor to get an exception. The phone call I received this morning 7/5 confirmed that the the practice is still closed and I can try in three weeks to see if there is an opening, or start over with the other doctor (who is also out of network... no thanks.)

I am not going to fight this one because I can't have a doctor/patient relationship with a provider who shows this kind of disregard; my son's appointments take approximately 35 minutes once a year. We pay $150 for this privilege. It's time to start looking for a new doctor.

I will not slander the medical abilities of this doctor because he has been extremely helpful in the past, however I will not be recommending him in the future.

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.

Not Running Away, Just Running

My back hurts. A lot. And my makeup is smeared and my ankle hurts, and my wrist is a little twisted. I am sort of a wreck, but I would chop off a toe with a dull blade if that was also necessary to keep my son safe; a little injury is worth it.. it's always worth it. I will feel better in a few hours, after the adrenaline surge dies down and the kink in my back is ironed out with an anti-inflammatory.

Jake ran away from me in a busy parking lot 20 minutes ago and despite that diagnosis of cerebral palsy ataxia, he moved so quickly that the only way to get him back was to leap and tackle him.. on the asphalt, in the middle of a moving car line at the pick-up where his sister had camp today.

I got a hold of him, straightened myself up and walked on the  campus, my hand firmly around his forearm, no longer bothering with his hand at all. A very kind counselor who could not possibly have been more that 18 noticed me, and must have known that something was up by my demeanor. When she asked if I had a question, I broke into tears and said "My son just escaped my grasp in the parking lot and got away from me. He's fine, but I need to get it together before my daughter sees me." She graciously said, "Why don't I go get her for you and you can take a minute."

Jake and I sat there on the edge of the little playground, me firmly holding a twisted knot of the back of his shirt, his hands sifting through the tan bark. I wiped my tears, assessed my physical damage, pledged not to be angry with my son, and took a deep breath.

Lucy bounded out with the sweet counselor who brushed away any of my apologies as completely unnecessary, and as we left, Lucy said, "Mom, I want to play on the play structure." and headed two feet away from me. I reminded her that she was headed to a birthday party and she happily came next to me and we all got into the car.

Then I had this flash, not of how frustrated I am, or irritated, or disappointed that such a simple errand could not be completed without major incident.. but a flash of how my son must be having all of those feelings and more. When he "ran away," he probably just wanted to play in the tanbark at the edge of the parking lot. Sitting right near our car was a little slice of what my son must think is paradise. That big fresh pile of tanbark just waiting to be spread abut the flower beds at this beautiful elementary school campus, siren calling him, and he probably just wanted to put his little man-hands through every piece of it.

He wasn't necessarily running away, he could have just been running. And how could I possibly know  the difference?

Can you imagine having all of the desire to do something as simple as putting your hands in tan bark, and being unable to do it because you just couldn't tell anyone that's what you wanted to do? Lucy asked to play on the play structure, turned away from me, and I certainly didn't lunge after her.

But, of course, she came back to me. And I know that she would do the same thing in a parking lot, or an airport, or Disneyland. She comes back to me, and before she leaves, she looks both ways to make sure she will be safe. I can count on that. I taught her, and now she knows it, and that's the end of that, and anything other than that is her being naughty, but even at her naughtiest she is always safe.

I remember having a discussion with one of Jake's teachers when he was at his previous school where they had proudly put "I want to go to the bathroom." push-talkers near the door frames of both exits of the classroom, so the children could press the button on their way out the door. I thought it was a great idea, except for the part where Jake is not allowed to get up out of his seat during work time. How could he ever communicate a desire to go to the bathroom if the icon is across the room? How humiliating, how degrading.

Does he live his life with the hope that I will be there to intuit his needs? That his next caretaker during the day will be able to understand his subtle facial expressions and vocalizations. Here I was, so worried about Jake being injured this afternoon, but I'm not sure that it isn't perhaps more painful for him living every day, just hoping the people around him will take a moment longer try to understand what he wants, where he wants to be.

I am crushed to think of how many times I have been impatient with him, wishing he would just do one single thing I asked him to do, when he is probably wondering if today will be the one day that he gets to choose to play on the play structure, linger. But I can't let go of his arm; I just don't know that what we have tried to teach has stuck in there.

And how will my son ever prove to me that he will come back if I can never trust him enough to let him leave?

****

This post was an editor's pick today at OpenSalon.com

He Handed Me a Tomato.

I struggled to make the story more compelling to the parent of one of my daughter’s friends. He’s a kind man with two typical children, who asked me about Jake without any pity in his voice. (I hear that voice quite often, and it’s something I have come to understand, but still find hard to get over.) His was more of a genuine query about a child who isn’t often the “plus-one sibling” at the 5 year old birthday jumpy house affairs.

“I handed him a piece of tomato, and asked him not to drop it on the ground. I told him that if he did not want the tomato he could just hand it back to me.” I continued, feeling again that warm sensation of pride in my son, “He stopped, pivoted slightly and handed me the tomato, crossing mid-line, uh, going across his body, to give it back to me." The man smiled, and nodded his head, and looked like he really wanted to understand the significance of what I was saying.

And of course he couldn’t really understand why I stood there in the kitchen with a tomato in my hand, and tears in my eyes. Such a simple task, I’m surprised he had the patience for me to finish telling the story at all. But I know the importance, because for what I think is the first time in my son’s 10.5 year-old life, he followed a direction, in the moment, and made a physical connection with me, purposefully, and he had nothing to gain from his actions. We’ve come close, with a sippy-cup dropped into my hand, or rolled down the counter near me when he wanted more to drink, but this time he really put something into my palm, and he had to make a choice to do it… I wasn’t on the way, and there was no reward, no benefit at all. That unwanted tomato could just as easily have been dropped to the ground. He was even headed towards the back door to play outside, a preferred activity for just about any child, but he stopped and gave me back the piece of tomato, calmly and politely.

It is amazing how much joy we have watching him continue to learn and make progress in these seemingly benign ways; these subtle acts that he keeps adding to his repertoire. It leads us to believe that he is processing information in new ways, able to parse the language and make all the “holes line up.” And if he can hear and process and act on what he sees or hears, that means there is more possibility for him to be able to communicate his needs to us. And better communication means a more connected boy, and a life with less challenges. Like most parents, watching our children succeed is a fantastic double whammy; we get to see our children be happy, and we get to know that the hard work of raising children is paying off.

What I didn’t tell the daddy in the park were the next things that went through my mind. Because even as I stood there in the kitchen, the glow of pure joy, excitement and pride washing over me, pressing me to call every grandparent, those next thoughts went something like, “Oh my God, we are totally screwed.” After I exhaled the joy, I was filled with a paralyzing fear that we are never going to catch up, and there is so much more work to do. He handed me a stupid tomato, it’s not like he got the top score in his math class, or figured out a better way to extract rare earth elements. Jake’s home-aide squeezed me and let me know how cool it was to witness the new skill, and all I could wonder is if he would ever have enough self-help skills to be anything close to independent. Is he destined to rely on other people for every part of his life? I mourned that we have missed the window of opportunity. The plasticity disappearing in his brain, those neural pathways becoming fixed, fearing that moments like these will be farther and farther apart, and there are so many things he still cannot do. As a ten-year old boy I should not be cheering on the simple act of handing me a tomato. He should be skateboarding, and climbing trees in his friend’s back yard. He should be testing the boundaries, and reading Harry Potter or breaking his right arm as he barrel-asses down the slopes on his new snowboard. He should be playing too much Wii, and reading after I’ve told him to go to sleep. He should be asking for a raise in his allowance, and trying to convince his grandparents that the iPad2 is a perfect gift to give a graduating fifth grader.He should be doing so many more things at this age, and there I am pathetically sniffling over a piece of juicy red tomato.

Which leads naturally to the third emotions that rang clearly through my brain. First, pride and joy, then fear and sadness, and finally, guilt and shame. I immediately chided myself for comparing my son to some sort of norm; he is incomparable in most respects, to most other children in both deficit and strength. He shouldn’t be doing anything more or less than what he’s doing, and the fact that I let all of those things run through my head meant that I was not present for the child that was standing in my kitchen. My son is not any other child than the one before me, and how he learns and grows and interacts with the world is going to be different than every other child on the planet, autism or not. It’s shameful to dwell on what I thought parenting would be like, what my home would look like, how my children would act, and what they would do to pass the time, and I thought we had long since stopped comparing him to other children his age; it doesn’t do anyone any good to compare. I do not to indulge in the rat hole of "why me?" and try not to get side-tracked by the accompanying envy of lives that look easier, simpler, or more carefree. When we keep longing for a life that didn’t happen, or that won’t happen, we lose all those moments of the life we actually have. And I have a great life.

I tried my best to move my mind back to joy as Jake ran out the back door and I put the tomato in a shallow bowl for him.

While I sometimes can’t help noting the typical-kid milestones we miss, I am, for the most part, less troubled than I used to be. These days I am more focused on how I can help Jake become the happiest, healthiest child he can be, in the most supportive environment. How can we engage him in the activities we have determined make up the core of our family's value system? How can we make him feel safe and heard when he doesn't have a "voice" as others have. And I’m trying to strike the balance between having expectations for my son, and being unrealistic.

So maybe it’s not an amazing story for anyone else, but I know this is part of the joy in my life; I get to witness these small victories. I get to help Jake learn and watch him gain the kind of skills that most people never even notice. I get to be thankful for things like pincer grasp. And I know I will never take for granted his health, his ability to walk, his sneaky smile, or the one time he handed me a tomato.

****

This post was an editor's pick today at OpenSalon.com

Mothering: It's Never as Easy as It Looks

I actually never thought mothering would be easy. I thought I would have a hard time getting pregnant (I didn't), and when I was pregnant, I worried a lot about having a child with special needs (I did).

I knew, from having been a precocious child (that's precocious, not precious!) that children could have smart-mouths and not sleep well. And from my teenage years, I recognized that children turn into young adults sooner than you think and might even sneak out of their parents' home, spend their 17th birthday across the border, and they might even water-down the creme de menthe in the liquor cabinet without their parents even knowing.

But I did think, for example, that my children would listen to me, and actually do something very, very close to what I asked, within a time frame that looked like they were following my directions. As much as I talked back and asked why, I am fairly certain that I did follow instructions, or at least I went to my room to be grounded. I thought there would be a lot more museums and going to the opera, and learning needlepoint, more library visits, trips to the beach and fishing, and I find myself pausing, in the face of things I don't like, or are hard, or not fun, and I ponder if I am being a good enough mom.

"If you are wondering if you are a good mom, you are, because bad moms never wonder." 

That's my line to other moms. To my sister, to my friends, to strangers. I can say that to lots of other women, and comfort them when they feel like they are faltering, I know what good parenting looks like, and even when we make mistakes, it's mostly the trying hard that counts in parenting.

But it's harder than I thought it would be; much harder, and I can't always be settled with my own advice. I feel like I have not met their needs on most days, that I have been selfish. I lie awake thinking I didn't try hard enough, or that I used an unkind voice when I could have taken a breath.  And I worry that my chances to "make up" are slipping away; Lucy will be five in a month and Jake is ten and half.

What I did not expect, what you can't see from the outside, is the gnawing inside that I would never, ever feel like I had done enough for my children. Is that what being a mother is? To have those thoughts of each child's temperature and stomach content and to constantly be discerning the cleanliness level of both their teeth and clothing. I am concerned about the radio, television, books and words that are on display in my home and in my car. I worry about how they are treating their friends, and which children are they befriending? And how are they communicating with others when I am not around to intuit their every need? Every choice I make considers their very existence.

It seems so much easier for other moms. They naturally make plans for spring break that include the science museum and a trip to the beach. They stop by the library on their way home from dance class. They enroll their children in violin lessons, piano lessons, and drum circles, and plan sleepover parties for six.  Maybe I make it harder on myself because I have such amazing friends, and every thing each of them do, seems so fantastic that I want to do all of those things, even if those activities are coming from three or four or five moms, and not just one. It may be unrealistic, but not undesirable.

I would love to have a day when I knew that I had done my best, and that was the best that could be done.

*****

There are some other things that are so much easier than I imagined, so much better, warmer, brighter, meaningful and important. I hesitate to call them out because I don't want to mock them, or make light of their gravity, but they are mostly the things I never knew about at all before I became their mother.

Missing my first-born when an emergency surgery kept me from him when he was only 30 days old. The ache I felt in that hospital room without him was the most unbearable pain I could ever imagine, no wound or slice, or broken bone can compare to that hollow that could only be filled by that tiny boy. And the wholeness and lightness I felt when I held him again was like no other joy I had ever had.

My daughter asks me to sing her to sleep so she can 'hear me in her dreams' and holds my hand in the car while I am driving so we can be close before she leaves me for the day. My son has friends at school, and has developed meaningful relationships all on his own using his great sense of humor and his joi de vivre.

I never could have guessed how wonderful it would be to sleep next to my babies, or how watching them sleep could make me weep

...and I didn't know how easy it would be to fall in love, so deeply, so permanently, and so completely.

Thank you to my husband and my children for helping to shape so much of who I am. And to all of the women who support me, pave the way, comfort me and praise me, I am forever grateful.

****

This post was an editor's pick today at OpenSalon.com

Signs of Autism

In our family, we make medical decisions using science, facts, and data, and we believe in keeping our children healthy, so we vaccinate. I have never thought that vaccines caused my son to be autistic.

Except for that one time.

Lucy was a perfect baby, not that she never cried, or blew out a diaper, but she held her perfect little round head up, and rolled over on time, and she just looked. so. perfect.

When she was four months old I took her for her routine vaccinations. She was in the 90th percentile for height, the 75th for weight..right on track, and the nurse gave her 3 shots: HIB, Pneumococcal Prevnar 7, and inactivated  poliovirus vaccine (IPV) She got little round bandages stuck to her little chubby leg. She scrunched up her face to cry and I nursed her a bit, and tucked her back into her little outfit, and put her in her little car seat where she slept for two hours.

When she woke up at home I reached in to get her and she began to wail. "Poor thing, must be starving"... so I pulled her close and set about to nurse her... and she twisted her head this way and that, thrashed about and screamed. And screamed. And screamed. Every time I tried to comfort her, cradling her in my arm like she was a bouquet of flowers, she just screamed at me. She wouldn't eat. I panicked.

Oh my God. My child had her shots two hours ago, and now she is a different child. This is how it is, one minute the child is there, then they're gone; that's what I've heard. My daughter has autism. Oh my God.

In an instant, every single piece of science went out the window, and anecdote took hold. My science was my child,  my screaming child.

I called the front desk of the large-ish medical foundation, and put an urgent message in to the doctor I had just seen. I made sure the nurse wrote down "adverse response to vaccines."

The doctor called me back within 10 minutes, heard the sound of my voice, and Lucy screaming in my arms and told me to rush right back in. The short ride to the doctor's office is only longer when I am carrying my children in utero, and my contractions are three minutes apart.

Lucy was calm in her car seat "bucket" on the way to the office, but that was no consolation to me. We have spent years driving our son's autism around trying to calm him down enough to sleep. A kid that is quiet in the car doesn't mean anything. When he was younger, we replaced the tires almost as often as we changed the oil and that kid with autism still screamed when the car stopped.

We were ushered into an exam room, and I left Lucy in her car seat until the doctor came in just a few minutes later. The doctor looked calm, collected and very worried all at the same time. She quietly said, "Show me exactly what's happening."

Lucy squirmed and whimpered when I pulled her out of her precious floral-patterned bucket. I laid her on my lap then picked her up and brought her close to nurse. She started screaming and thrashing. Her face turned all red. She was not the same baby that the doctor had seen a few hours before. The doctor helped Lucy try to latch on, to no avail. I got tears in my eyes.

Oh my God. Oh my God. It's all true: Vaccines cause autism. Jenny McCarthy, Age of Autism, Green the Vaccines, Generation Rescue.. they are all right, somehow, with no scientific evidence, and I just gave my precious baby all of those shots. I broke the baby.

I sat there, sniffling and holding my crying child,  pulling her closer and closer to me, afraid now that I would drop her and make things even worse.

The doctor took a step back, sat on the rolling swivel stool that all kids love to play on, and moved herself across the floor towards me again. She very gently took my left hand and moved it slightly. I was still cradling Lucy's head in the crook of my left arm.

Lucy turned her head towards my breast and started to nurse. Her body was still a little squirmy, then she calmed down and sucked away, trying to fill her tiny stomach up.

"You were pinching her thigh- where she got the shots. You were just holding her leg, and pressing right where she got the shot." I started to cry, not a lot,  just enough to release all of that terror that had built up." I think you are okay now --that she's okay. Call me later if...just call and leave a message and let me know how things go the rest of the day. And come back in if you think it was any thing else."

"You know I'm not a paranoid mom? You know I wouldn't have called, but Jake's autism, and, and, we had the vaccines and, and, I just feel so stupid."

"Don't feel stupid. I knew exactly what you were thinking, and I know you're not a paranoid mom. You're not crazy. It's okay. All of that flashed in my head too; but now we know. So, let's not pinch the baby's leg any more and everything should be fine. Sit awhile and feed her. Take a deep breath." And with that, she left the room.

My baby girl does not have autism. One day, after her vaccines, she screamed a lot when I squished her little leg.

I can't imagine how I would feel if Jake had been a "typically developing child" as some parents of children with autism believe their child was; losing language and the ability to communicate their needs. Jake was different from the beginning, the very, very, first-day beginning; at least I thought he was. So I have never felt like some thing was taken away, or that he was somehow damaged. He has always been a whole, healthy, child whose brain worked differently. But that feeling of thinking you've had something taken away must be such a painful experience for those parents; the parents whose recollections are that their child did change overnight, and stayed changed and not because of a little boo-boo on a chubby baby leg. But I know that's just not how it happened with my son and his autism. I'm guessing, in our case, as in many or even most other families, this is a genetic issue which will be brought to light in some number of years down the road. Could there be an environmental insult? Maybe, probably. I'm sure it's complicated. That's why I'm waiting for the data before I go blaming anything.

What worries me is that I am a person who does believe in science, who has weighed the whole of evidence against the righteous hand of anecdote, and I have settled firmly on the side of scientific proof, not only for the health and welfare of my own children, but for society at large. If I could be swayed in a moment of dismay because of all of the "Tabloid Medicine" that abounds, what happens with someone who gives the pseudo, or non-science, equal weight? Those people who think that anecdote is somehow equal to a properly done scientific study? If all of that can go running through my head pell-mell given my daily practice of relying on data in my decision making, then what happens in those other families? I was so quick to turn to the anecdote and to rumor in that moment, and I'm someone who has access to good information. But good information can be harder to find. It's difficult to compete with celebrity endorsers and personal experience. It is a hard sell when all you have are numbers, and black and white pages of scientific jargon.

*****

It's time for us to all turn towards science. I'm not saying we should abandon completely the spiritual, or the intuitive parts of our nature, because I am aware that some things cannot be fully explained by science, and most moms know their kid better than anyone else ever will. Don't throw out everything you have learned through life experience, but, in general, as a rule, why don't we all trust the science just a little bit more, and guess a little bit less. And those of you who do vaccinate, or use medications, or believe in the scientific method, let's start talking about it. Let's not keep our mouths shut when people start bragging about how ossicilium cured their cold in "just 7-10 days", or that the echinacea they took last year, prevented them from getting the flu last month.

And perhaps we should start insisting that the science in the news be reported by someone with even a modicum of understanding of science. If that's all too much, then at the very least, let's all decide, right now, that celebrities will have no part in the decision-making process when it comes to making choices for our health, and our childrens' health.

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

A Very Belated Thank You

I am a very grateful person. Every morning, every evening, and many, many times throughout the day I am thankful for my friends and family. When I unlock my door, not only am I thankful that my key works, but that I have a door to open.

When I am standing in the midst of the debris and various body fluids that seem to accompany parenting, and the additional food on the floor that is brought on by a child with disabilities, I am thankful that my children are healthy, and with me. I am so grateful when my husband, who has somehow managed to put up with me for more than 15 years, walks through that door again, and helps me get our life cleaned up, and set up for our next adventure. I say, many, many, times a day to myself: I have a great life--and I actually mean it.

I try to tell the people in my life that I love them, that I need them, and when I find their jokes funny. I almost always write a thank you note.. oh yes... I really do. I write them.

and then they sit.. in a box, or in a pile of unstamped mail, in between the seats of my car. They get lost in the shuffle of my life. They used to get to the people I want to thank. I even used to send cards to people randomly just to let them know that I care.

So, for all of you who are waiting on that thank you card.. for my dearest friends who do too much, and for the gracious hostesses who have served me well, and those that have gifted my children all of the amazing things we have around our house... I'm working on it.

If you get a note in the mail, or on your porch, or in your child's little cubby, and it's dated 2010, or even 2009, please know that I've been thankful for you that whole time. All of those days between you adding joy or brightness to my day, or saving my ass, I am so grateful for you, and for you, and you, and especially you.

I hope you know that.

Why the Sad Face?

I hate it when my kids cry. I hate it even more when it's that fake cry that my daughter has mastered--you know the one where, if you tickle her just a little bit she bursts into laughter, or if you say the word "candy," she stops the faux water works (faux canalisation d'eau?) The worst sound may be my son's silent moan with tears, but I haven't heard that in a while...a long blessed while.

But we have had some tears this week. 

Yesterday Lucy sort of just lost it on the way to school. She had eaten a balanced breakfast, had enough sleep, and because she was actually being a good listener (and mommy had enough sleep the night before too), we had not had any of the usual morning squabbling over shoes-on, hair brushing etc. So we get out the door, into the car and began our race to the freeway (with the cruise control at the speed limit). She started to cry. 

Looking into the rear view mirror I was so afraid it was going to be a faker, whiny, brat, cry baby that I steeled myself for the barrage of mean things I would need to force back down my throat, because, after all she is only four, and still learning how to ask for what she needs. 

What I saw, instead of a bratty little monster, was the saddest little girl I've ever seen. Little tears slipping down her face, she asked if I could pick her up from school before nap time.  
  
"I'm just going to miss you a lot today Mama, and I feel like I wasn't close with you at all yesterday, or on the weekend when I was playing, and I am probably going to be sad a lot today and miss you so much. So can you please pick me up really, really, early?"

"Well, Bug, you have "Cheery Chipmunks" dance lessons at school after class, so it's a late day for you. Are you sure you want to miss Cheery Chipmunks?"

"Oh this is too hard. I want YOU mama. I like to dance, but I just," and she broke down some more, "want you."

And so I made a u-turn at the light at the top of the hill and told her that she was going to stay home with me for the day. 

If there was ever a little face that said "I need a mental health day" that was the face.

It wasn't easy for me to let go of my messy house that needs cleaning, or the bills that need to be paid, or the myriad essays I need to finish, or the calls I need to return, but it would have been a lot harder to say goodbye to that little girl at the door of a preschool.

She's not going to need me much at all pretty soon; I knew I would leave home and live far away by the time I was about 8. She can already happily stay at a sleep over for 24 hours without more than a 5 minute check in on the phone. 

As much as I love how independent and strong she is growing, I know that part of the reason she is okay when I'm not around, is because she knows I really am here. I tend to think that if we don't give our kids that feeling like they know how very deeply they are loved...every day, well, I think some of those kids stick around too long waiting to hear it. I know there are lots of other reasons why people stay near their family, or fly the coop, but I want Lucy to be so confident that she is loved and supported, that she can leave, and forget to wave goodbye.


And yesterday, that meant shopping for some new jeans, going to a movie, meeting Daddy for lunch, snuggling for some nap time, and pulling out the oil paints to finish some art work for the grandparents. It was a great day, for both of us.

And today? She's staying late at school for soccer... no problem.