I Don't Hate Autism, I Hate Migraines.

Last night my baby girl had her first migraine. Or maybe it wasn't a "real" migraine, but it was a headache so big, that it made her cry on the floor, holding her little seven-year-old head, while afraid to touch her scalp. It made her need help lying down for fear that that her head would 'crash.' She wept and moaned, and looked scared by how the pain took over her entire brain and she told me it made her unable to think of anything else.

myGirl at 7

She didn't have the aura that I get, though she found it painful to read or look at light. It was a headache that built up over the course of the day, and had not diminished after water, food, exercise, or relaxation. She was so miserable, and almost unable to be understood between her sobs and pleas for help.

We have the tools to make those kind of headaches go away at our house, and so with a cool glass of water and a magic melting pill (Maxalt) she was able to crawl into bed, and lay flat, and eventually her swollen eyes closed, and she slept. She awoke today pain-free and chipper from a solid night's sleep. 

*** 

I don't sleep all the way through the night very often, between checking on children, and restless dogs and the occasional bouts of snoring (mine or my husband's, or the dog's) I awake at least once an hour, and I get out of bed 3-4 times a night to be sure that the hatches are truly battened down and no one has escaped, or died. But mostly I fall back asleep easily, unless there is something big playing around in my mind.

Last night, each time I awoke, I realized I had been expecting something. I listened each time waiting to hear the sounds of un-soothed uneasiness. I had been expecting Lucy to be throwing herself around her room, or sobbing, or screaming in pain, because I had been triggered, and I remembered all of those horrible nights when Jake was younger. All of those days we had before we knew he had migraines.

Watching Lucy on the floor of the hallway last night so upset, barely able to speak, I realized how lucky we are that we figured out Jake's headaches at all. Right in front of me was my eloquent daughter with all of her ability to speak, unable to communicate her needs; how did Jake ever stand a chance? 

myBoy at 7

It took us years-- years of testing, and reading, and researching, years of praying, with people we barely know, praying. We drove 'round and 'round, and devised elaborate set-ups to rock him gently even when his body was too big to be held in the gliding chair, or the IKEA swing. We hired caretakers to allow us to sleep, knowing that he would be crying and screaming all night long. We made his twin bed into a giant gated box so he could at least throw himself down onto the mattress over and over again. We took turns holding his hand as he leapt up from between us in our bed and threatened to fly off onto the floor. We tried to keep him safe even as he knocked into and broke our noses, and his grandparents' glasses. We tried to keep him eating and drinking. I remember holding him, crying with him, and making him every promise to try to help him, feeling like I was failing when I had to take a break and pass his care to my husband. He was at least seven before we had a handle on it.

And for all of it, as bad as it was for Descartes and I, and how ashen we got, and how it affected our friendships, and our careers, and our health, and our marriage. I know that it was so much worse for Jake. It was so obvious he was in pain, but no spinal tap, MRI or genetics test could tell us why he was biting at his own hands in frustration. You can still see the scars on his beautiful hands.

Those years before we figured out the migraines are often a blur, sometimes other people need to remember them for us, but I do recall how sad Jake was. So very, very sad. I remember the desperate look in his eyes, like he wanted out of his own body. I remember how he yelled at me, and I just kept hoping that the sounds would turn into words that I could understand, so I could help him. Not being able to soothe him was the most helpless feeling I've ever had.

He had all those sounds, and actions, and giant movements (despite his cerebral palsy), to try to tell me something, and I just couldn't understand the one thing he wanted to tell me: Mom, I have a migraine. 

***

Sometimes people in the online-world think that Jake must have very few needs because I speak about parenting him without saying things like "I hate autism." or "Autism can suck it today."  I have never felt like something "stole my child," or that the "real child" is "hidden behind the autism." I don't believe that saying there is an "autism epidemic" helps my child, or my family. I don't believe that autistics are burdens on society. But just because I don't buy in to all of that doesn't mean I don't find this particular flavor of parenting harder than I thought it would be. It doesn't mean that I don't sometimes long for my son to encounter the world with fewer hurdles. It doesn't mean that I don't want, sometimes, for things to be different than they are. 

But those notions or longings and desires are not always about autism, and my guess is that similar wistful thinking happens for all kinds of parents and people all the time.  I don't need to hate autism to want my son to have an easier time at things, just like I don't hate being tall just because no store-bought clothing ever fits me properly. Autism is intrinsic to who he is, and you can't hate a part of your child and not have that child feel like they are damaged goods. 

I don't hate autism. I hate migraines.

A Little Rain Must Fall

I saw the piled boxes at the store, each one containing a pair of galoshes and a matching umbrella. I hate umbrellas. They just break, or the wind blows them the opposite way turning you into a flower bending in the wind, rain soaked and wilting. And when you've used an umbrella and arrived at your destination then you need to carry the umbrella around, or put it in some bucket at the door where it will most likely be stolen. They never seem to dry out, leaving wet marks on the seat in the car, or on the floor. Their drips of water make the entry way dangerous.

I remember liking umbrellas when I was little. Do you remember the clear ones that came all the way over your head and down to your shoulders, but you could still see? I always wanted one of those, and I'm not sure why I never got one.

So all of those things go through my head as I am standing there looking at cute fireman galoshes with red umbrellas, and black polka-dotted galoshes with a shiny matching polka-dotted umbrella. The pallet of items had just come in, but I know how these places work, and if you aren't there when the awesome thing comes through you are out of luck, so I stood there and decided what kind of mom I was going to be.

My daughter loves umbrellas, and galoshes. She loves matchy-matchy. She loves having the specific gear for an activity. She likes having things that are similar to the things her peers have. But all last year, I denied her having a stupid umbrella because I don't like them. I didn't see it as a necessary item for a 5 year old who never walks in the rain farther than the distance from the car to the classroom door, or our own back door. When I was in kindergarten I walked to school, but I still think I got a ride on rainy days. I did not see the point of starting some umbrella habit, when I could explain, and demonstrate the practicality of hats, which are both fashionable and functional, and can keep you warm and your head dry. I thought that her waterproof jacket and hat were plenty to get her through the misty mornings and occasional downpour.  So that's what we did last rainy season, we went by my rules.

And every chance that kid got she would borrow a friend's umbrella, even if it was just to walk across the playground, or five feet from her friend's coat hook to her own. I almost think that she was the only little girl who didn't have an umbrella of her own last year. Part of me was a bit smug thinking that I was raising this more practical and flexible child who knows that rain is just water, and it will dry. I thought that I had gotten away with something, and that my daughter was more mature having moved right on past that stage of little sets of things for girls that coordinate and fit for only one season.

Standing in the aisle of the giant store, air conditioning blasting, the rainy season more than four months away I thought differently; no longer feeling like I wanted to be practical. Instead I really, really, wanted to give her what she wanted, a matching umbrella and rain boots, because she is growing up so fast, and really, how many years are there left when she will want to look all that cute and buttoned-up, and so over protected from drizzle. I got a bit choked up thinking about how many things she just will never do again, which leads me right to the fact that we aren't having any more kids, so not only is it my daughter's last few years of this preciousness, but the last of mine too.

I vowed to have more patience. I promised to enjoy those things that she needs help with, like getting in and out of the Jeep, or putting on her bike helmet. I thought about doubling up on the singing at night, and reading one more book, every time she asks. I decided to buy her those little boots with the matching umbrella because she would love them, and I would get to have a sweet little girl for at least one more rainy season.

Scanning the boxes, I smiled, thinking how big her feet are already at a size 2.

Then a part of me was crushed-in, maybe forever, as I painfully realized that the boots only go up to size 1.

Where Are you Going My Little One?

My daughter, my baby, turned six yesterday.

She is beautiful and kind and quick and loves to curl up sweetly in my arms to start the morning. Each day I am equal parts terrified and delighted to be her mother. I know I will mess up a lot. I have already expected so much from such a small person, but she rises to the occasion, and I suppose, ultimately, so have I. She makes me rethink my inner core and calibrates my moral compass like no one else I know... except perhaps her brother.

And she loves her brother so much. She cares for him, she cares about him, and she cares about his future and the futures of his friends and classmates. Though she is always aware, and works hard to support his needs, she gives him only enough room to provide for disability, and after that she bickers with him as any other sibling pair might do. They fight over blankets in the car on road trips, and she saves half of almost anything good she has so he can have some when she gets home. The natural and easy way she accepts differences by not bothering to mention them unless she doesn't understand something, makes me have hope for her generation that there will be more tolerance in every way. She doesn't stare, she says "Hello."

She loves to drive in her Daddy's car, begging him to take off the roof of the Jeep, and sings along with the cranked up music, asking him to take the long way. She picks up jingles from television, and sings them too, with a rock star voice.. .who knew that the insurance commercials could sound so powerful? And when she's watching tv, she understands marketing, thinks that little girls should look like little girls, and not minitature grown ups, and knows to say "Can you add this cool toy to my list?" instead of flat-out asking for it.

She's not boring. She can carry a conversation, and knows who the president is, and about reproductive rights, the importance of voting, and with her proclamation: "You should be able to love who you want to." it's clear she supports equal rights for all when it comes to marriage, raising children, and living life. She has a crush on the boy who has long wavy brown hair, but has some thoughts about living with us for a long time. She's not yet sure she wants children when she grows up, and has thought about going to University locally (ahem, that would be Stanfurd). Her only thoughts on "leaving us" are to get a cool house with her brother to help him out.

She can be counted on. When there are times I urgently need her assistance with something because I don't always have enough arms to keep everyone safe, she makes it clear that every talk we've ever had is stored in her head, and she remains calm and helps exactly as she has been taught to. She always locks the gate behind her.

She is too much, over affectionate, loud, bouncy, "on fire"...she is a cross between Tigger, and me, I suppose, with a dash of initial reserve that is just enough to remind me that she is my husband's child too. She mostly puts all of her energy to good use, and though I wonder who she is when I'm not around, when we got a note sent home from her after-school care it included an award:

For being wise beyond your years, listening to others, and seeking not only to be understood but to also understand others.

I am trying to remember that she will only be this small now, and she is already taller every day. When she lies down in the tub, her hair streaming out like a mermaid, I can't help but notice that her feet touch the other end, and in another month or two she will need to bend her legs to to try to get that calm of peaceful floating. We'll need to find another place where she can feel light like that, because I want her to carry that feeling with her as she grows up and has more responsibilities.

*******

My precious girl, I love you more than all the leaves on all trees that 

have ever been and ever will be, and then I love you more. 

You are my best-favorite.

Happy Birthday.