Is There a Pill for This?

I've been working on a post for The Thinking Person's Guide to Autism on why we chose to give Jake medication to address his ADHD symptoms, and how to go about it if you think your child might benefit.

The thing is, as I keep working on the post, and I've been opening it and writing, deleting, and writing again, every day for over a month, I find that it is really not my best work. The language is stilted. There is no flow. I can't seem to get the words out, or clarify my message.

Last night was a restless one for Descartes and I. I could tell at about 4:30am that neither of us was sleeping. But just in case I was wrong, I let the silence surround us, as I am NOT wont to do. Silence is so heavy for me. It forces me to think for myself, instead of bouncing my ideas off of other people, gauging their reactions. It forces me to be my own company, which makes me think about what I like and do NOT like about myself...and then how I want to change those things, which inevitably leads me to thinking about how I need to do more for my family, for my friends, for my work. I form to-do lists at 5am that I will accomplish TO-DAY! for the projects I dedicate my mind to.

So this morning in the darkness I tried to work through what was bothering me about writing what would appear to be a simple post about the medications I give my son, why we do it, and how to do it. I think I am worried about the judgment. People, myself included, are so quick to judge others. It's how we determine friend or foe, helpful or harried. We make snap decisions about people all the time. If we have grace, or empathy, or something other than outright narcissism, we might consider why another person is behaving in a certain manner, and hold our harshest judgments, or our condemnation, but sometimes we just judge and move on.

People, individuals I know, and talk show pundits, and magazines and teachers have judged my family and our choice to give Jake medication, and it is painful to think that others might view me as the type of parent who would cause my child harm. What's worse is that I judge myself. I know we've made the right decisions.. I know that we have, but a part of me questions the ethics of giving a non-verbal 10 year old medications, which alters his mood. He can't tell me when he has cotton mouth. He can't tell me if it is making him feel anxious, or if he's not eating because the medications remove his appetite, or he ate a big snack at school. And I have found myself thinking that many children are mis- or over- diagnosed with ADD or ADHD, when all they really need is some more stimulating way of teaching to keep their attention focused on learning.. or maybe they just need to have P.E. in school again to run some energy off some of those antsy legs.

But I don't want to share that part with parents who are trying to figure out if pharmacological intervention might help their child. I only want to tell them the good parts, about my son's overnight ability to sit in a chair, or go to brunch with his grandparents again. The way he can make it through a five hour flight to Hawaii, and dinner. I want parents to be unaware of those harsh judgments, so they can get to the point of helping their children, because in spite of those naysayers who tell us we have made up ADHD, some children will benefit from medications like this.

The Thinking Person's Guide to Autism is filled with fact-based information. Science. Truth. Honesty. It is already helping families and has opened communication with adults on the spectrum. I know that an honest account, of all my emotions, will be the post that reaches the most people. I just want to balance all of that negative- the negative in my own mind, and all of those harsh words around us, with all of the possible benefits, and somehow write all of it down, without being judged.

or, as I have often done in my every day, going-to-get-through-this way, I suppose I could just do what I need to do and let the critics say what they must before they move on... because they do eventually move on, and what always remains is the best decision I can make for my family at the time.

Things that Make Mommy Want to Double up on the Wellbutrin

• Clock reads 7:54am and I can see that with my head on the pillow next to Descartes' head, and I can see he has his eyes closed. Jake should be at school at 8:00am. [family flies out of beds and races around]
• Being told that Jake "hit" a woman in the hall yesterday.
• Upon further questioning, discovering that perhaps Jake just had his arms spread out wide and grazed her as they were walking through the wall.
• Being told that the difference between hitting someone and grazing them as you walk past is "semantics".
• Trying to leave an environment before you "graze" someone, and trying to endure people who want to chat with you.
• Bursting into tears in front of your toddler.
• Explaining to a little sister that their big brother is very unhappy.
• Hearing the little sister explain to me that "Jake just doesn't want to go to the classroom with BB because I don't think hims likes her."

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.

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.

News Flash: Woman with No Childcare Maintains Sanity

okay my mother just complained that I haven't posted in seven days.. so here is something that I tried to write and finish on the 14th of January

****************************************
seriously...

Last time we had daytime help with Jake was December 21. We have been out two times at night (after kids are asleep), but other than that I pretty much have been on duty.

Jake is back in school and Lucy goes to her little home daycare on Tuesdays and Thursdays for a few hours (or more)... so it's not like I have it sooooo bad or anything, but the afternoons can be really very hard, but they haven't been.

Jake and I went to The Psychiatrist last week. Jake is medicated. I know some people think this is wrong, but it the right thing for Jake, and for our family. When Jake takes Adderall he is able to be present in the classroom, follow some directions and learn.. he can also sit nicely enough to eat meals at a table. He can even manage to use a fork (pre-loaded by us). Basically, the extended release was wearing off as he got home from school leading to very rough afternoons.. rough like Jake couldn't sit for dinner, couldn't take a bath with his sister without kicking her, and couldn't follow any type of direction. We also saw tears, temper tantrums and, well he was just nearly beside himself every afternoon.It was the perfect storm..Jake has an expectation of how he feels all day, and it was gone, I have an expectation of how many directions he can follow, and he couldn't follow any, I am tired from being me all day, and, of course, we have "the Four O Clocks" at our house like any/all families do.

So we are now giving Jake 5 mg of a shorter release of the same med. Basically he is now in control of his emotions and his body until bed time. Phew.

A Nearly Daily "Back" Regimen

I open the kitchen cupboard and fiddle with all of the little bottles, then take:

2 Naproxen for my aching back.
2 super vitamins to get my mom off my back.
1 Wellbutrin XL so as not to get all over someone else's back.
1 "Stay Awake" (generic No-Doz) to keep from lying down on my back.


I swig this down with a sip of water with a Coffee back.

In it For the LoOOOOOOOOOng Haul

this is the longest week in the history of all time.

Valerie asked for the day off, she already doesn't work on Wednesdays or Fridays...so that makes Monday and Tuesday that she was here helping with Jake (total of 5 hours). Thank GOD Lucy goes to Nanny Tidwell's house for a bit on Tuesdays and Thursdays. Jake goes back to school on Monday. By 9am this morning I was already done. I hate that feeling. Probably doesn't help that I COULD NOT sleep last night. Too many things on my mind. I was making lists.. this insomnia and mild panic could possibly be explained by....oh wait uhm yeah....

did I tell you the best part? I got a call from the pharmacy during which I was informed that there is no known date for the delivery of more Wellbutrin. The country is out of Wellbutrin? Holy Crap there are going to be a LOT of cranky awful people out there. I tried taking a generic yesterday and it just made me feel crazy. I know it is supposed to be the same but it is worse than not taking anything. It makes me feel like my brain is soupy and my emotions are all twisted up. So luckily I keep a stock pile which should get me through an extra two weeks past when I should have refilled the Rx.

As if being cookooo wasn't hard enough they gotta make my crazy pills scarce too? Yikes!

yeah what- --ever

what ever I said yesterday about forgetting to take Wellbutrin.. HAHAHAHAHAHAH
this morning if I could have double dosed without risk of seizure I would have.

Descartes had to go to the dentist. He pretends like he is not anxious, but I know he is. He just says "I don't want to go". Basically he was very quiet and needed an abnormal amount of prompting to help get kids ready today. He is so good with them in the morning these days that I realize it now makes me a bit irritated when he isn't, poor guy.. just can't win :)

and I am going to try to work on my project today... and pray that Lucy does better at childcare so that she may be able to stay the rest of the month. That is a longer story.

and Jake's aide doesn't come until noon.

and the housekeeper comes this morning, so I am instantly reminded that my house is overrun by clothing (all clean, but still) and I am a failure because I can't even keep my own damn house clean by myself.

and Jake ran FULL STEAM into my ankle this morning. I can apparently handle having my ankle twisted right from under me, or I can handle being stabbed by two troll toenails, but I cannot apparently handle both at the same time without tearing up and wanting to swear, and dropping nearly to the floor in pain. How did I ever give birth? Then he fought me with every single pant leg off and new pants on... then a bit more with a new diaper,

and made me chase him to put his yogurt/meds combo. (this last one being a job Daddy has been doing mostly.. so it was extra irritating to have to chase Jake with yogurt/meds in a bowl with Lucy following and yelling "that, that, that, THAT" because she wants some too. and she can't have even a bite because it has time release Adderal in it and it would do God knows what to that little hellion!)
and so
I am off to take Lucy across the city to her little daycare.

Trigger Happy

So I find no shame in saying that I take Wellbutrin. See I said it. Okay, some shame...I need a crutch. My doctor said very nicely.."jennyalice, You are having very, very normal responses to a very extreme situation.. and I don't see the situation changing any time soon".

But what I have noticed lately is that I have been forgetting to take it sometimes, and here's why I think this is...

• I have had consistent childcare, both in number of hours and with the proper nurturing of my children.
• I have been giving away and throwing away things from my house to try to dig our way into a cleaner easier life.
• I have been completing some contract work.. for that same beautiful SF company.. and they appreciate what I can do.. and pay me accordingly.
• I have a "new-ish" group of friends who are very supportive and brave and funny and who appear to like me.

So what I have figured out is that I need a few things to feel human: a little time away from being a mommy, a little control over my environment, a few moments where someone thinks I'm smart, and a couple more when someone thinks I am funny. That's it. On a day when I can also add going to the gym, making dinner for my husband and reading a book.. well that sounds like a life of luxury.

Most days I get a "trigger" which reminds me that a little round white pill will make life a lot smoother...like I look into the unfinished backyard which I began to undo for my kids, but will most likely never finish, or I try not to get kid's poop into the cracks on my hands which are there from washing my hands so much because I change so many diapers.

Some days the "trigger" comes at 4am when Jake is wandering the halls and I am unable to get up to help him because I still have Lucy nursing for what seems like all night long for these 13 months of her life.

Whatever it is, lately I haven't noticed those "little" triggers, the days aren't as tough when I have some of those other things going on. hmmm....

Camping in Carmel

www.saddlemountaincamping.com

well, we are off today to camp with the family in Carmel Valley. Hopefully Jake won't run off. At least the dogs will be at home... Normally I worry... we are going to lose a kid or a dog. I think this time I will just lose my mind. Jake didn't sleep last night, and he seemed a little overwhlemed by his cousins (both girls, both super smart, both very active)

Prayer is the only thing that is going to get us through camping.. oh, and valium. Yes valium. and wine... (but never together of course)