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.

Calm

Lucy is eating her fourth piece of toast smothered in butter and home made jam. Jake is in the back yard sifting rocks, creating his own Zen garden in the corner.

The migraines have finally passed. This time. We made it through another round.

I try to remember how I felt just a few days ago. I think it's like living while drowning, if that's at all possible. Although I've never been even close to drowning in actuality, I can imagine that our life with Jake's migraines (which exaggerate his other disabilities), our life might be like when you have fallen in and you are just about to swallow that first breath of water, but you can still see the surface. I feel like I'm not going to make it, as if I have run out of patience and compassion and energy and will.

and then I catch a breath. Descartes comes home from work, Jake slips into a tenuous calm, the babysitter shows up, and I can come up for just a moment.

Wow. Now That's Customer Service!

The Rite Aid pharmacy employee was just a TOTAL bitch to me. A phenomenal wow, seriously? kind of nightmare. And I know I am a bit of emotional Hulk right now so things can set me off, but c'mon.

They did Jake's insurance wrong and when I asked her to run it through the correct one so it would be zero dollars, she said I would need to come back because she had "a lot to do."

I said, "Well it should take about two minutes at the most because it has happened before."

Then she started to argue with me about how I should have told them which insurance to put it through (which I have) and that I would need to come back to get it--and she was huffy and puffy and hands tapping at the counter kind of irritated.

So I said "That's okay, never mind, it sounds like you are in sort of a bad mood, and I have a seven year old with a migraine so I don't care how much it is I will take it now. Thank you so much."

And she hemmed and hawed and said I would need to come back.

and I started to cry and said "I am having such an extremely bad day, a bad week really, and I have a child with a migraine and we need that medicine now. So I will just go ahead and pay the money and take the prescription now. It's not a problem."

Through the bullet-proof drive-through window glass, she held the medicine up in her hand close to her body and said I would need to come back.

And I said, "I will pay you the money for the prescription now. You will give me the medicine and I will leave right now with my son's medication. I am paying you now and you will give me the medicine and then I would like to leave right now."

She paused, sort of unsure, it seemed, of what to do with that many directives from someone who is not her boss.

Then she finally, reluctantly, slowly went to the register with the money I had shoved in the metal box (after reaching in and grabbing the handle so I could pull it out myself and shove cash in.)

She started to be argumentative again as I took the medicine. I said "I need to go now."

and so I left.

what a piece of work she was...'cause that was EXACTLY what my day needed.


The good news is that apparently she is a "floater", and not a new employee at my pharmacy...so I hopefully will never see her again.

Duh.

This week has been very very hard with Jake. He has been so "bad" after school, throwing himself around, unable to sit at dinner, screaming, crying, loose-limbed and non-compliant. Jake was so tormented and sad and throwing himself this morning that he:

• cried real tears.
• scared Lucy (not on purpose, but he was so loud).
  
• reduced me to tears during the sock and shoe phase of the morning.
• made Descartes yelp in pain from wriggling away whilst Descartes was still holding onto Jake (Descartes' back twisted a wrong way).
• made me so worried that I decided not to leave the kids alone to shower (Descartes had an early meeting).

Then I decided to try the (DUH!) migraine medecine. 18 mintes later he was calmly riding in the car to school. He was fine all day at school, mellow, (almost like a person who had had a mild seizure?). When he got home I gave him another Maxalt since last time it seemed to wear off around 4pm. He has been the happiest he has been in days.

Duh. duh DUH! One pill and he felt better. One pill. My poor boy.

I do not even have enough room in my heart for the guilt of having not thought of it sooner.