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.

Turning Corners in a Round House

last night as Jake settles into bed:

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

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


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

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

Fall Break Week One Update

No California Academy of Sciences today.. my great plan to entertain both of my children. Today is "Free Wednesday", and while I think that is just fantastic for everyone else, those kind of crowds do not make navigation easy, so we will skip that.

Jake is feeling a little bit better in terms of episode...I think... He was able to lunch yesterday at a restaurant. Sage met us at the local Indian buffet and he was well behaved and was even following some directions. Jake and I "rolled" around the shopping area from 10:30-2pm waiting for our car to get new run flat tires, then new front and rear brakes... ouch to the wallet. Run fat tires are a great idea, but they cost at least twice as much as most tires and last half as long.

Anywhoo, Jake went into his wheelchair happily... he has a cold so he was a bit lethargic, which after the past however many weeks of spazzing and throwing, I'll admit I was a little bit okay seeing. We went to a discount store where he picked out his costume.. a skeleton. He laughed when I told him it was perfect because he was skin and bones already.

I don't think Lucy is going to be thrilled with Jake's choice of costume. She is prety convinced that she is going to be a penguin, Jake is going to be a puppy, Daddy is going to be a pumpkin and I am going to be a bee. Just ask her. SHe's been saying this for at least a month now. How quirky she is!

Wish us luck we are off to Lucy's swimming lesson. Jake hates it there... lovely.

*************************

Swimming update... Jake did very well at the enclosed noisy swim school that Lucy loves so much. Half way through the lesson my dear Squid came to entertain Jake so I could help the teacher Faith, remind Lucy to use "big arms". Jake even gave Squid a little low five in the car and smiled when she asked whether he was going to come over to her house soon. Yay for friends! Yay for Jake feeling better! Yay for giant coloring book purchased for Lucy at Costco which may keep her entertained for the next 15 minutes!

Out on the Town

Descartes has just taken Jake out in the car again. Jake was screaming and crying. Throwing himself around on the kitchen floor. I gave him 1 mg of Atavin at 3:45 as recommended by his psychiatrist. It has done nothing to relieve whatever "this" is. 

Every day 5:30-8:45 Jake screams and cries. Have you heard of sundowning? It is a term most often used in describing symptoms which occur in those afflicted with Alzheimer's. Maybe that's what is going on for Jake. 

I still managed to clean out the toys upstairs and get a flank steak marinated which Descartes grilled when he got home. Had I actually gotten a hold of Descartes at 4:15pm when I tried texting him I would have begged him to come home because Jake was so out of control. Then I made the kids dinner and half way through, Jake started smiling and laughing. Then he played in the back yard happily... and then he lost it again.

I am so tired. Emotionally drained really. and poor Lucy..all potty training has stopped. She is telling me she is a baby. 

The only way things feel sane is to have someone come to help us every day. The fact is we just cannot afford to have that much help. Yes we get respite hours, but the reimbursement rate does not cover what an aide actually costs.  We never have help over the weekend Friday through Sunday we are on our own, because **really** shouldn't we be able to take care of our own children? 

I just want my arm to be healed a little more before we start cutting hours. I know this episode won't last forever, but it better end before it breaks the bank.

Upside Down

Jake was a happy kid this morning, and then I found myself typing this entry into my phone in the school parking lot. Windows are rolled up and I can still hear him screaming as he thrashes his way down the hall. 

He started crying two blocks before we even got to school. Jake has always loved school,and now he cries, and cries, and cries...with tears as we near the intersection that dictates that there is no other end point beside school. 

I sent a scathing letter to the district yesterday in regards to Jake's 1:1 aide. She is not a bad person at all. she just isn't cut out to be an aide in a Special Ed. class. or at least not Jake's aide. Not many of us are. I sure as hell don't feel like I have the right skills and energy to do this job on many days.. but I didn't CHOOSE this as a profession. At her young age I am hoping she can find the right career.somewhere else. We should, if all goes well for us, have a new aide when we return from fall break in two weeks.

*******************************

I forgot Jake's bus vest and had to go back to school... and his nose is running clear, so that means it is allergy time again.. Lovely. As if we weren't throwing a whole bunch of drugs in him already this week, let's add Clairitin. 

********************************

Jake arrived home (early day) happy happy kid. SO happy that I asked him if he wanted to go get ice cream for a date. Even with my recovering arm, I was thinking that he looked so happy it just might work. Sure enough he said "eye-ce creammm" so yeah.. Jake got ice cream. Three scoops of cookies and cream with chocolate sauce and marshmallow topping. And he sat nicely and even looked at the employee who said she was glad to seem him after all these weeks.

*******************************

I still gave Jake an Atavin. I don't yet trust that at 5:30 he will be this happy child, and I cannot have any more bloodshed in this house for at least another week.  

Just not That Funny

So I can't remember where I was, perhaps it was the CBS 5 Blogger Mixer? (which was great by the way) and someone told me I was funny. And then they asked, "Is your blog funny?" and as I contemplated a witty answer, my dear friend Squid volunteered

"No. It's about her life." And then the conversation moved on.

Yeah. It's about my life, which lately is just not that funny. I mean I can make most things sort of sound funny...

like this one, ready?

Beware of Safeway meatloaf, it nearly killed me. It was so tough I almost took off my left index finger a few weeks ago and had to go to the local emergency room to get four stitches to staunch the bleeding. The wait wasn't very long. I asked them to triage me last so I could actually get a nap. As I see it that visit will end up being 40 bucks a stitch and $200 an hour for a bed to nap in.

What really happened?
Jake was so upset, as he has been for weeks and weeks and weeks now that I was hurrying and watching him thrash at the counter with his aide and I stopped looking at what I was cutting and sliced my finger. It bled through a kitchen towel and I still finished making his dinner so I could feel comfortable that I was leaving the aide with as little else to manage as possible. At the hospital I fell asleep on the gurney so hard that they were a little worried about me, as it seems they would leave the room for 20 seconds and I would fall sound asleep before they returned.

and then here's another good funny story:
My younger brother Gerard came up for the weekend. He arrived just in time on Thursday to go out for drinks with all of my mama friends from SEPTAR, scaring them with his amazing white teeth and strong beach body builder physique. On Friday night we decided to eat dinner at home because Jake was having such a hard time. He yelled for me after he went to check on Jake who had gone to bed early. I ran down the stairs only to find my brother with blood all over his hands and when Jake slid a bit to the side, trying to wriggle away from Gerard, blood all over the floor. Dude.. welcome to my home.

okay I can't even make that story funny.

After we put Jake to bed he continued to thrash about. I gave him the max on the benzodiazepine that was recently prescribed by the Psychiatrist. Apparently, this stronger and "smoother" drug takes more time to kick in and more time to wear off, than the other one we had used sporadically to control extremely out-of-control, dangerous, thrashing. We kept checking on him, but Gerard was the one who found him covered in blood, coming from an unidentified head wound.

Head wounds bleed a lot, and after carrying Jake upstairs and putting him in his 5 point car seat in the car, which the only place we can truly hold him down without hurting ourselves, we cleaned up the wound and decided not to go to the ER. Staples that would probably get pulled out by Jake would inevitably be harder to deal with than waiting until the swelling in the little know went down and the 1cm would closed up. It wasn't long before the bleeding stopped, but it was several more hours until we felt comfortable that Jake wasn't going to bash his head into another wall downstairs, so he sat in the living room with us, belted into his thank-God-we-have-this wheelchair. It was awesome. Jake's car seat still has Descartes' shirt over it covered in dried blood.(which Descartes stripped on and held against Jake's head as soon as he saw the blood.. God I love that man who knows how to react...)


okay so you can see...not that funny.

I also have an injured shoulder from Jake ripping my arm out of the socket (practically) which, while it is healing, and I am going to PT, makes me incapable of doing many household tasks well or at all... and my house was not looking good to begin with. And then I had an IEP for Jake, which led to the need to have another one (those went very well, just took a long time).

And I had a really emotional day after getting Jake into Camp. You would think that it would just make me happy, but it is a really bad process to sign kids up for 1:1 aides. I know I must be first my son's advocate, but it makes me cry (while driving friends on the highway in my Not-so-mini van at 75mph.. not good)

and did I tell you about the 2 inch nail Jake stepped on last week? I don't think I did. Went into and back out of his foot. His high pain tolerance meant that he did it while I was 12 feet away from him, and did not know expect for a strange drawing-in of breath that he took loudly. It was an odd enough sound that I watched him for a minute noticed a slight limo and asked Descartes to check out his foot as he passed by. He just scooped Jake up and said we are going to the hospital. I called Sage and she came for Lucy without waiting for me to tell her why I needed last-minute babysitting. The ER was great. They "got" Jake, and didn't insist on numbing his foot all up with a bunch of needles before we took out the nail. It came out as it had gone in quickly. Jake only cried when they washed his foot, and I am guessing it is only because we held him too still. We were able to spend the entire next day focused on Jake because Squid took Lucy home with her to play with Mali.

I haven't been laughing a lot lately.

I am okay. Good things have been happening too. I know they have. We decided on the list of contributors for the next Can I Sit With You? book due out in November. Jake continues to say more words at school-- "No! Applesauce!" when offered yogurt. Lucy is starting to sleep a little better. My closet is clean. I have amazing friends who jump at the chance to help us. We went to the new California Academy of Sciences which the kids loved.

Those things aren't funny either, but it is my life.

This is all just one part of my life, which will pass. Hopefully I am in a learning phase right now so that the next part is really really easy, and less physically painful, and funny. Maybe it will be funny.

A is for Apple

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

  

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

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

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

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

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

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

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

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.

No More Patience

I'm not sure what has put me over the edge but I have no more patience right now. Could it be the incessant whining of my two year old? My same daughter who will not fall asleep without a tremendous struggle that lasts hours and hours. Perhaps it was a weekend with my house filled with extended family, whom I love very dearly, but when you plan for Friday night and get the whole weekend...

and the babysitter didn't show up again yesterday...miscommunication... I know I know. I am going to get new help when school starts..just two more weeks.

and Jake flipped out (episode time) last night during bath time and came up from the ground full speed and knocked me in the chin knocking my jaw into my friggin' brain. I am stiff and sore this morning from that one. Luckily I didn't get my tongue cut off.

This morning little Miss Lucy happily went to her new daycare and Jake proceeded to whine for several hours. His migraine medicine doesn't seem to be working, although he is a lot calmer now that lunch is over. Just in time for that PhD student to come over and do a verbal test on him. Fantastic!

I am going to drink a diet Rockstar and take a Wellbutrin and hope that I become civilized enough to deal with adults.

Right now it's a good thing that Jake likes to hang out by himself because I am not pleasant company.. but I am feeling just a tad bit better writing it all down.

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.

What is the Deal?

Jake had such a hard time yesterday afternoon that his therapist walked us across the playground to go in to therapy..then right back to the car. Jake flailed the entire time. My arms hurt, my knees hurt. I am so saddened by his outbursts.

Is this the all new and improved episode?

Missing Something

It is Dognobble's birthday today. He was the best man in our wedding, his wife read a poem during the service. We were in their wedding 4 weeks later. They have been the best friends we have ever had. And now their kid barely remembers me when I call to wish his daddy happy birthday.

We used to go to Montana every year with them.. and before there was a "them" and an "us" I went with Dognobble and groups of friends and we helped build the cabin, plant trees and watch the stars.

We used to go to their house and stay up all night long drinking Lime Rickey-Mickey's, good Scotch and bubbly water, and wine, and one time tequila when we had run out of everything else. All while our child slept in a pack and play in the guest room. We used to take walks along all of the beautiful paths in their town, and spent several Halloweens touring their safe flat city.

We actually talk when we are with Dognobble and DB. They are much more liberal than we are.. or at least they think they are, since we hold our hand pretty close, but they are damn smart and so open to discussion that by the end of each evening at least one of us seriously considers taking on a new opinion on any given subject. After one night I went and bought a book on world religion and another documenting the ongoing saga of "Peace" in the Middle East. Not exactly easy conversations.

At some point it got too hard. They have always been so warm and welcoming with Jake. Loving and asking all the right questions and saying all the right things every time, but it was too hard for me and Descartes. Too hard to take Jake and have him flip out at their house because he had such crazy sleep problems, maybe too hard to have Jake not be able to play with their precious and oh-so-smart and physically capable son Teton. Their house is on the way to my sister's house, and whereas it used to be that Dognobble's home was our final destination, we continue on to Tahoe now. They had a second child, also perfect and wonderful, and still we managed to see them, managed to get to Montana, and now all of a sudden, or not suddenly at all, Teton can barely remember who we are, and doesn't remember meeting Lucy at all.

Dognobble is very important to me; they both are, but Dognobble occupies a special place in my heart. Yes, I did date him in college, but it was a very brief relationship that turned into a much better and deeper friendship...mostly, he is important because he knew me when I was all hope. When I could still be anything in the world I wanted to be, and I was going to be. He knew me when I went dancing at least two, if not three nights out of seven, and still managed to work 80 hours a week, and still have more energy to make cakes for friend's birthdays and drop in on a recording session or two, just to hear people lay down amazing music.

I am pouring myself a glass of wine and toasting Dognobble. Toasting all of his successes, and his beautiful wife, and his amazing children...and his ability to help me remember some of who I was when it is hard for me to see that bright-eyed girl in the mirror. Thanks Dognobble, and Happy Birthday dear friend.

Sleep Perchance to Dream

Both kids are sleeping. Jake went to camp this weekend. His kind 1:1 aide gave us the tame run-down, saying that there "were some rough spots". In truth it sounds like Jake was in a serious episode. Poor girl. She was visibly skinnier when we took the monkey off her back.

just getting started

Jake is coming out of an episode. It's hard to say if they are really getting better. It seems like they are farther apart, and last longer, but they aren't as drastic as they were before...no blood, no black eyes. Well, actually I guess he did break my nose during the last episode in November. I can't wait until he's a daddy and I can tell him that one when he is whining about some little parenting nightmare of his own. So far he's only three and he's given me a black eye, a broken nose, and bruised eye socket, permanent scars on my hand form his biting, and those are just the things I haven't blocked from my memory.
I have been thinking about writing a book "How to Really Survive with a Special-Needs Kid." Not only does no one tell you how hard parenting really is, but certainly no one knows how to prepare you for raising a special needs kid. Though I suppose, even if I wrote a book, and made it specific to the bay area, it still wouldn't capture the "how to's" for most of the people we know. My husband I and I use dark humor to get through most days, peppered with crying (me), swearing (me) drinking too much Charles Shaw (both of us) and watching mindless television (Descartes).