full exposure

ok- just so you know it's still me, i'll share a few things opposite of bird songs and monkeys in trees :).

today i found out that my eyelids are puffy and itching like crazy because of my new mosquito net.  and today i was acutely reminded that, "oh right! i have a child with special needs."  today i was reminded that my life, where ever i am, is usually lived with my underwear sticking out.  i just can't get away from that, try as i may.

today zoe had her first 'melt down' since we've moved.  today poor zoe got overwhelmed, and our poor new friends had to deal with it, friends who were helping me out so we could buy a kerosene lantern and some fabric, friends who don't really know me yet and who don't know zoe. 

i was standing on the side of the road bargaining for a bamboo shelving unit for the bathroom when the phone rang and zoe was crying.  she'd been playing, she'd gotten a sticky thought, she'd gotten upset, she'd started crying and yelling and yes, even, throwing things.  gulp.  that is bad.  poor zoe.  poor poor friends experiencing this, trying to help this, trying to know what to do with this. trying to wrap their heads around this.

they were generous.  they were gentle.  they helped her get home to her safe place.  but then everyone is left with the pieces.

the pieces of our lives that we do know.  exposed.  that at some point the other shoe always falls.  that when things are good for a while, all that means is that things have been good for a while- nothing else. that moving to a new place, with new people means learning all over again how to package things- how to help other people package things.  and that is hard.  and that is even painful. 

in thinking it over, this is our first move since shoes began falling fo' reals'- or being thrown as the case may be.  four and a half years ago when we moved to atlanta, we moved with people, and to people, friends and family who had known zoe for years.  people who, even if they didn't get her, loved her.  and four and a half years ago, zoe was 7 and life was easier for her, and for us.  she was different but not out of control.  and differences at 7 are much less obvious than differences at 11, expectations at 7 are much less than expectations at 11.  so this move, i knew would be hard.

and we had 4 really good days.  days when i thanked God but then didn't allow myself to think about it because i didn't want to jinx it (all subconsciously of course).  and i fault myself for not being more careful with her.  not being protective, not being precautionary or preventative.  instead i held my breath and jumped.  i acted in a bit of denial, i took advantage of those good days, i trusted them, when i think i should have known better, known that she needed more support and so did our new friends. 


but that is what happens sometimes.  you think for a moment that maybe life can be normal- or kind of normal.  or, you forget what your normal is. 


so after the call from crying zoe, and florence the lovely woman who was caring for her, and after a preparatory text from a friend about the incident, mike and i took the bamboo shelves and came home.  and i began my rounds of checking on zoe and those holding her pieces. 

and that is when i realized that i had moved. 

that i had left my deep rooted supports on the other side of the world, across a giant ocean and several time zones.  that is when it hit me that i have landed, at 40, with my kind of messy life,  in a new place where i need to navigate new supports, and explain my very complicated child.


it's not hard to leave stuff.  it's not hard to leave clean water from your faucets, and reliable electricity.  it's hard to leave people who know you.  who have seen the ugly cry and still like you.  who have helped you collect the pieces after you've fallen to bits.


so i went back to my house, and cried.

which was good. 
and real. 
and mike who knows me, held on to me and we talked, and then we talked with zoe. 
and we talked about the hard stuff- for all of us.  we tried to help her understand other peoples perspectives and feelings.  we tried to help her understand her feelings and to begin to recognize when she's feeling overwhelmed and to know that is when it's time to go, to re-group, to call us, to get some help.  and we told her if she ever threw anything again she would be throttled- ok- not really, but that she would lose an american girl doll.  we also apologized that we'd not been around today to help her navigate her world.


tonight the sun set at 7 as it has, as it will.  tonight i miss the long southern summer nights and i miss old friends. but the electricity is on so thankfully i can write which always helps put the pieces back together.  and i know that my far away friends are still there, that tonight they will look at the same moon i see now.  and i know that these kind, gentle new friends will be ok with the pieces- the exposed bits- the messiness of our life- besides they're stuck with us for a while :).

so i will be still and know.

haircut

oh dear. what goes up, must come down. 
another example of the always baffling inconsistency of zoe.

tonight, as usual, she was instructed to go take off her coat and shoes, put them away, go upstairs, get her pajamas on and brush her teeth.  notice i don't just say- go get ready for bed- because the tasks involved would not likely happen. the first time i went up, she's sitting on her bed, with her coat and shoes still on- reading a richard scary book.

now maybe i should have clued in.  i should have noticed the preschool literature choice and the inability to do the seemingly obvious first step of removing coat and shoes- and then softened my approach and offered assistance.  but i'm exhausted.  so i reminded her again what she needs to do- and tagged on that she needs to clean up her room.

when i came back upstairs a few minutes later- there is hair all over the bathroom.  yes, her hair.  she had decided to cut it.

now there are really two times in a child's life when they might cut their hair- one is when they're in preschool and are curious about scissors. hair hangs down and feels soft and it might be interesting to try cutting it. the second time is during the teenager years.  there is this new found independence- and with it a confidence that you're pretty good at most things, so when you decide that you need to see what you look like with bangs- you just do it.

i had an earthworm moment.  i stopped- looked at the bathroom, looked at her and her shaggy hair, and kept walking.  i just needed a moment.

when i came back upstairs i asked her what she was thinking. why it seemed like a good idea to cut hair instead of brush her teeth.

"because it was bothering me."

of course.  now i get it.  yes - an appropriate response to static-y hair.

i told her to please get in her pajamas and clean her room.  i sat there while she slowly pittered around picking up each item on the floor,  only using one hand, and assessed the damage.  she'd left the back alone, but had chopped large chunks out of the front and sides- you might be able to call them bangs- maybe.

when she went to brush her teeth- i had to just laugh- because it was so out of the blue, so random, and because she looks kind of funny.

but what i tried not to focus on, but lingers in the back of me,  is the impulsivity and lack of restraint- the apparent need to respond to whatever idea floats into her head- with out age appropriate evaluation.  where was the " on second thought.. i won't do that".  because when a 4 year old chops their hair it is funny- they don't know better.  when the teenager does it- it's also funny- they made a choice- they just need to live with it. she's stuck between the two worlds- not 4 and not 14.

she's not only in between, she's a little bit of both-preschooler and teenager- richard scary and harry potter.   but i already know that- so really, why am i surprised. 

so i decided to be here now.  to choose not to worry about what the play-out of impulsivity may or may not look like in the future- because i don't know. i decided it's just hair - it grows.  i decided to keep it a molehill and avoid making mountains.  i decided to let it go, and to laugh, because in the grand scheme of things, it actually is pretty funny.

happy valentines

happy valentines day! 
mine started with strawberry red vomit all over me, my light colored couch and my rug.  it was followed by zoe not doing her work, hiding, then not responding to me calling her multiple times- and me, finding her, snatching her stuffed hello kitty valentines gift out of her hands and bonking her on the head with it.  not good. it's been this way because everything bryn sips he throws up- and i woke up and still had my cold-foggy head, demi moore voice and all, and  a 'vestibular migraine' which means my balance is off and the room is spiny (and the neurologist said not to take the migraine medicine if that happens because i might have a stroke- that's really what he told me). and because i need to work on my talk for tomorrow- my talk for work- my talk about homelessness and palliative care. 

"so today we're going to talk about the intersection of homelessness and palliative care.  and this is really fun for me- because it's the intersection of two of my passions.  when i was a research fellow- i published a paper on housing instability and homelessness, and access to health care......."

back in the days of san francisco- the days when i was a doctor and quite possibly going to be a research oriented academic doctor- back when i was just pregnant with jude- before the knowledge of good and evil- before my life with zoe fell to bits.........back in the days with out a diagnosis, back when she was not-reactionary over everything- when she was flexible- when she wasn't ever mean (really)- when i had my own life- when she was in childcare from 7:30-5:30- in her life- back in the days before we needed medications, before we needed special schools, before we were kicked out of the special school, before i lost myself in her life- in her world- before mine began to fade away.

"and now i do palliative care- end of life care- care for people who's illness doesn't have a cure."

is that what i do? it is - day in and day out.  not just on fridays- because this stuff we deal with at home- this stuff she deals with everyday- it doesn't have a cure (even off gluten and dairy- better, not cured).  it's living with a life threatening disease- depending on how you define 'life'- depending on how you define 'disease' or  'dis- ease'.

"so lets think about what these things are separately- what is homelessness?  who are the homeless?  and what do people need and want at the end of life?  how do we do palliative care?  and then lets think about their interaction- about what might be unique and challenging about delivering palliative care to the homeless- what barriers must we address- what things do we need to think about differently?"

lets think about my life even 6 years ago, five or four years ago- other lifetimes ago it can seem- in those times when i studied people with out homes.  there was still struggle, yes-  there was unknown- but it wasn't like these years. it wasn't foot stomping, tantrum throwing, wailing- because you can't go to your friends house.  and you can't go because your poor little brother is vomiting his guts out- and your mom (who should have been writing her talk) can't leave his little side. those were the days when even if you couldn't empathize with him- you didn't get angry and explosive.

what do people want at the end of a life? how do we provide palliative care?  how do people live with life altering- life damaging- career wrecking change? the end of a life.  a life style. an expectation.  life as we knew it.  to palliate means to cloak- to cover, to protect.  is that what we're doing here? what i'm doing? not today.

it's 2:30- someone is snoring beside me after having the dry-heaves- and someone else is upstairs having lost hello kitty, and all her american girl dolls because of her absurd over reaction to not being able to go to her friends house today. because of her unwillingness to at least try to be sensitive to her  sick brother.  because of her storming upstairs yelling, "i just can't take change!"
oh really??

really?

tough.  because life is what happens when your busy making other plans.  because life is change.  because if you want to talk about having to adapt to change zoe- lets talk.


so he slept and she came down stairs and we talked about change- about the naturalness of it- the constancy of it, whether we like it or not.  we talked about trees and seasons- about what happens to the leaves in fall and winter and spring and summer- about the loss in the change and what you gain in the change- how you can't have one without the other. that plans changing can be disappointing- but there is always another opportunity. when a door is closed- somewhere a window opens.  and then i started listening to what i was saying, and i started believing it, and i stopped feeling so sorry for myself.

she said it was hard.  that she didn't know how to adapt to change.  i told her it's about making a choice- it's about how you look at it- what you focus on.  do you choose the sadness of the lost leaves or anticipate the buds of spring? do you choose to stay in that angry place of not getting to see your friend or do you make new plans for the afternoon?  do you twirl and twirl over what you thought you'd get and didn't or do you embrace the gifts that surround you now- different as they are, changed though they may be?



i'll choose to embrace.
happy valentines day!

happy halloween

wow- last year seems like a long time ago.  and i'm so thankful for that.  that it's not last year.  that we've come this far.

last halloween i won't forget. it was a dark spot with zoe.

she had been taking abilify which we had reluctantly put her on.

(i need to pause here.  there is no data on nonverbal learning disorders and medications.  there is very little data on autism and medications.  medications are primarily used to treat the symptoms associated with learning disorders/ or autism.  medications are often used 'off label' for other things than they were marketed for. at this point zoe was having a hard time with anxiety, and with sticky thoughts, and with getting out of control as a result of both the anxiety and the sticky thoughts.  we'd tried a few other things before this- prozac, which was helping but not enough, and amantidine- which for her didn't help at all, and some ADHD drugs which didn't help either.  i should also note, that we have a very good child psychiatrist who we trust and adore who helped with all this and who we use in combination with lots of non-medical therapies.)

abilify is an anti-psychotic drug. a 'big time' psych med.  a drug with potentially serious side effects. a drug with stigma. i'd been avoiding it. waiting. until it was so bad- that we decided those weren't big enough reasons to hold back something that might help her.  i was going through thoughts in my head like, "who will ever hire her if she's on abilify?" as if that had any relevance to our lives at the time.  it was a time of sadness and desperation and some very close friends (who were both psychiatrists) enabled me to see this medication with out all it's labels, as something to consider.  something that might help. something that doesn't have to be forever.  they reminded me that we needed to make a move because she was suffering.  she was feeling so out of control that she was miserable.  so finally, we decided to try it.

it was like magic.  really.  i could have left medicine and become a drug rep for abilify.  she, with in a few weeks, calmed down, she wasn't agitated, she could focus better, she could learn.  i have to say that i was amazed.  i was thrilled and so was she.  we'd started it at the end of august and we had a great september. then around the beginning of october i noticed she kept doing some weird thing with her mouth- like a teeth grinding motion. i kept telling at her to stop that thing with her mouth.  after about 2 weeks it dawned on me that it was so obviously a side affect of the drug- tardive dyskinesia- one that can become permanent if the drug is not stopped right away. i felt terrible that i'd missed it and even worse that i'd been yelling at her to stop it.  i called the psychiatrist and he told me to stop the drug immediately and give her a drug that would counter act it.  so three days before halloween we stopped abilify and gave her cogentin.

i was crushed. i'd gone from wanting nothing to do with abilify, to being terrified of what life would be like again with out it.  i was also stressed that this odd new mouth motion would never go away- my daughter with the sequelae of her psych med-to add to her list of trouble.  unfortunately to make matters worse- she had an adverse reaction to the cogentin- she was awake- wide awake for three days and nights.  it was awful.  and that is where we were last halloween.  on day three of no sleep- still grinding her mouth- and pretty much out of it.  because we had two little boys who were very excited about halloween- and about being a pirate and a ghost- we pulled it together and when out trick or treating and to a halloween party.  zoe went as some sort of a fairy, she was running on fumes. she finally crashed at the party and fell asleep on the couch.  she has no memory of last halloween- i think the no sleep erased it all.

so this halloween was fantastic.  and even more fantastic as i look back over the year- and i remember where we've been.  her jaw motion symptoms did resolve completely after a few weeks.  we were able to find another medication that has worked even better- with no side effects. (a drug used to help alzheimers patients- talk about off label). this year we planned the costumes- we went to two parties- one with her best friend and lots of people- lots of kids- no meltdowns. and the only stickiness was on the kids hands from eating so much candy.

happy halloween!