another red letter day

i decided that this was the year Malachi could handle the information regarding his autism diagnosis.
mostly because I see a lot more awareness on his part this year, much more growth, and I see him hitting a lot of walls. not understanding why he doesn't have friendships the way other kids do..not sure why he can't stop thinking about the same thing(s) over and over.. but I wasn't sure exactly how to go about this process either.
thankfully at just the right moment a special ed teacher came into Malachi's life and asked if she could meet with him weekly to prepare him for the information and also to help him cope with it.
in talking with her i found that her philosophy was very similar to mine and her approach was just an extension of what I have already been telling all our kids, which is that we are all different. We all have our strengths , we are all unique and not one of us is like the other nor are we intended to be, and that we should love everyone . I have also talked about how different people learn in different ways, some people learn well by seeing pictures, others by listening...some of us like being around lots of people, some like to be alone or just with one person at a time. ..
I was thankful to hear the teacher tell me that her goal was to emphasize what Malachi is good at, where his strengths are, and give him ways to cope with the things that come harder. But that over all we wanted to present it to him in a way that was to say this is a learning style, this is something unique about some people and they happened to give that special way of thinking/learning a name. Autism.
we also felt that it made sense to have him "learn" about this in a school setting where he is open to learning new concepts and it was a natural step in the social curriculum he's been doing.

Today I had a meeting at school first thing this morning regarding general progress for malachi at school. This specific teacher was there and I asked her- as I always do- if she had used the " A" word yet. she said she had brought it up last week , but not specifically about Malachi, and was planning to talk about it today.

it has weighed on me heavily all day. feelings of guilt that someone else would be presenting this information. worrying that he might think we are telling him something is WRONG and he would be worried or upset by it. And even worrying that he would not even give it a single thought too.



Tonight as he was getting into bed I asked him if he met with Mrs S. today. He said " yeah"
me: " what did you talk about?"
Malachi: " we read a book about a boy who had (something I can't understand)
me: " ..what? oxygen?"
Malachi: " no, not oxygen...like..inside your brain.."
me: " a boy who has AUTISM?"
Malachi: " YES"
me:" ohh yes. autism. what did you think about the story?"
Malachi: " it was good. I liked it"
me: " did you feel like the story was about you?"
malachi: " well, yes"

we went back and forth a little as he tried (rather sleepily) to ask me/ tell me that autism was a thing..
I felt he was a little confused and I re-explained that Autism is just a name for a certain way some people have of thinking/ learning.
" like you"
I said.
" how do you feel about that?"
Malachi: " good. fine"

he's very sleepy at this point so I just let the conversation wane and brushed the hair out of his eyes as he closed them and started to drift off to sleep.


and thus begins Chapter 4 .

PS I have since received this explanation from his teacher:
" We did read a book called "Taking Autism to School." It was about a boy named Sam who has Autism.

As ideas were presented about Sam that "matched" Malachi, I'd prompt and say something like, "Do you feel frustrated with loud noises?" He would answer "yes".

At the end, I said, "Malachi, do you think you're like Sam? "

Malachi answered, "Yes."

I said, "Do you think you have Autism?"

He answered, "Yes."

There wasn't any emotion with it, so I think the concept still might be a bit abstract for him yet. "

you know how sometimes you listen to a song by accident and you are suddenly in a different time and space ?

the heart is a TIME MACHINE

THAT just happened.

i sold a painting, but i couldn't be happy about it because the painting paid for me to have my teeth drilled into this morning. i felt a little bit like what i think it might feel like if you sold an organ and then used the precious money from your GUTS to endure your face being wrecked for a day and that's basically it.

also we are having hard times with our children. i think you call it "parenting" . whatever it is- it sucks.
oh i know you're not supposed to actually admit that. whatever. it's my blog.
the thing is- it would be fine if we didn't have to have them be in school. that's basically where all the problems happen.

example: kid teaches my 7 year old to say F word . he does it , even though he has no idea what it means, and gets in big trouble.
kid teaches 7 year old to stick up his middle finger. he does it. and is then told that that means the F word, and he gets in big trouble AGAIN.
teacher calls our Dr to plead her case that the 7 year old is a monster.
i go to the dr today thinking we will prove that this is utter nonsense and we are not out-of-control it was just circumstances...
what happens?
7 year old and 3 year old get the case of the sillies. i'm talking sillies on an epic level. full-on laughing hysterically, wrestling, rolling on the floor, spitting, ripping paper and general stinker-towns. but the thing is- they aren't being malicious, they seriously can not - for one filthy second stop laughing and control their bodies.
at one point the pediatrician actually holds my 3 year old and gives her a time-out , because she is THAT ridiculous that we can't even have a conversation.
half of me wanted to scream and beat them and the other half wanted to lay down on the ground and start laughing with them.
what ? why? why for the love of all that is holy do they get the super sillies TODAY? when I need to prove to our dr that all this complaining from his teacher is unfounded...and
OHhhhhhhhhhhhhhhhh dear lord in heaven. the insanity.
I'm surprised no one wet their pants with all that laughing.
you know the scene in Mary Poppins when they are all up on the ceiling and Mary is clearly PISSED?
if I could have told a story about a dead puppy to get them to come down i would have. at one point i hissed in ivan's ear " i'm serious- you are in such major trouble" and he still could not contain his mirth.

so i have to do the walk of shame out of there...dragging my two hoodlums along with me as all the "good" parents watch ..shaking their heads at us as the two red-cheeked glassy-eyed little varmints just keep right on giggling as they decide to RACE to the elevator . without me.

and then i have to come home. feeling like the most giant failure ON THE PLANET all because - yet again- we did not do what society wanted us to do .
and what happens?
we get home and 7 & 3 year old go into 3 year old's room and sweet as pie play quietly on the floor.
no fighting. no wrestling. no licking. no hysterical laughing.
nope.
playing.
like normal children.
can i please call all the teachers and drs and have them come to my house NOW? at this very second? because i swear to you i am not crazy. they are not crazy. we just don't belong here.

we get home and i do what i always do when we get back from germ-land (pediatrician's office) I take their clothes off and wash them. then we put on pjs.

after this happens i look around and survey the damage of a night and day without mommy cleaning up after everyone. DISASTER. every single area that can be messy IS. laundry basket overflowing, toys, dirty dishes on the table, carpet cleaner in the middle of the floor. pile of dirt that didn't get swept up yet..don't even get me started on the kitchen..
so what happens?
someone knocks at my door.
and OF COURSE it's Malachi's case worker. YEP. I spaced on our appointment . i can do nothing but let her in and apologize. profusely about the state the house is in. and we are in.
I slide piles of stuff over and we sit at the table. the kids proceed to eat all the granola bars and an entire sleeve of crackers while I talk to her. they know i am powerless to stop them.
in the middle of our meeting my husband wakes up from his nap (yes. at 4pm. yes- he works a weird shift) and comes out of our bedroom WITHOUT HIS PANTS ON. lucky for him she didn't turn around quick enough and he was able to jump back into our bedroom before she caught him in his shorts.

so that happens.
and she leaves and i suddenly remember two things.
A) tomorrow is St Nick's day
B) I didn't make dinner.

Jes picks up chinese. i have not eaten ALL DAY because of my dentist appointment and numb mouth, so i am RAVENOUS. I eat two hot bites and Violet starts screaming.
she has never IN HER LIFE pooped her pants (since she has been potty-trained) so of COURSE she would pick the middle of dinner to poop her pants, get it on her hands and on the floor. And be completely hysterical about it because she's a lady. and ladies DO NOT poop their pants.
so i have to take her to the tub and clean up the floor and all that while my husband and boys eat their dinner.

I am hesitant to push " publish" now for fear it will set off another chain of crazytown events.

PS
tomorrow I get to take Ivan AND Violet to the dentist. Someone WILL lose a tooth. (the dentist- when Ivan kicks her in the face)

HAAAAAAAAAAAAAAAAAAAAAAAAA

little prince quote

"For millions of years flowers have been producing thorns. For millions of years sheep have been eating them all the same. And it's not serious, trying to understand why flowers go to such trouble produce thorns that are good for nothing? It's not important, the war between the sheep and the flowers?... Suppose I happen to know a unique flower, one that exists nowhere in the world except on my planet, one that a little sheep can wipe out in a single bite one morning, just like that, even without realizing what he's doing - that isn't important? If someone loves a flower of which just one example exists among all the millions and millions of stars, that's enough to make him happy when he looks at the stars. He tells himself, 'My flower's up there somewhere...' But if the sheep eats the flower, then for him it's as if, suddenly, all the stars went out. And that isn't important?'" ~ the little prince


I feel personal about this quote , maybe because one of the names I go by amongst friends is " flower"

now, now. (St. vincent)

I'm not your mother's favorite dog
I'm not the carpet you walk on
I'm not one small atomic bomb
I'm not anything at all

I'm not the feather at your feet
I'm not your yellow brick street
I'm not anyone you'll see
I'm not anything

Now, now now, now now, now

You don't mean that say you're sorry
You don't mean that say you're sorry
You don't mean that say you're sorry
You don't mean that I'll make you sorry

I'm not the pawn to your king
I'm not your world on a string
I'm not anyone you'll beat
I'm not anything

Now, now now, now now, now

You don't mean that say you're sorry
You don't mean that say you're sorry
You don't mean that say you're sorry
You don't mean that I'll make you sorry

school.( in defense of public school for a change)

it's a touchy subject between mommies.
why?

it's not an easy decision. who will teach your child? as mothers and fathers we know that we are the primary teachers of life to our children. we are where they first learn most everything. from love and relationships to self-discipline..well , list is long.
But then it comes to the academics and we have to decide if we will put the in a school or continue to teach them that at home as well. We are lucky and blessed we have that choice.

as a parent our job is to KNOW our kids. they aren't just kids. they are people. who they are is there from day one. their needs and learning style and ideas are unique to them and that should be viewed as valid and real. it's our job to learn them. who they are.

what's frustrating to me is when people's personal choice of how to school their individual kid- who is different from everyone else on this planet- becomes the " rule" or the BEST choice across the board.

I know a lot of homeschoolers. And I myself was homeschooled, so I know that it's not the easy choice by any means . Lately the trend of homeschooling is on the rise so there is a lot of information and attention being given to it. And it is time for people to understand it and see it as a real option available to them. It's wonderful that it is becoming mainstream enough that it's no longer a strange "weird" thing to do. I'm happy to see it being treated as a valid form of education .
(and I hate to say " but") ....
But, I think some homeschooling families feel they need to defend their choice, and in doing so there seems to be a lot of judgement being thrown at non-homeschooling families. Perhaps it's just from where I sit?
Homeschooling is not easy. it is a sacrifice in many ways, but just because it is a sacrifice does not automatically mean it's the better choice for everyone. nor does it mean that the parent who puts their kid into a public or private school is NOT making a sacrifice. In fact , there are many times when the parent who decides to put their child into a public school is making the hardest sacrifice they have ever had to face

As a parent of TWO children with *special needs, the hardest thing in the entire world for me is to place them into someone else's hands. into their care, away from my control. my protection.

But when you have a kid with needs above and beyond the average kid, the truth is- you need a city to help you raise this child. You can not do it alone. - no- not that you CAN'T, but you shouldn't have to. why? because this kid needs all you can give and more. So what happens when you don't have more?

would my kids be ok if I kept them home with me? would they be safe and happy? would they be protected and could I control what they heard and learned and could I save them from mean words and judging looks?

don't think for one second that is not the most tempting thing in the world for me .

But at some point, you need to swallow your pride. swallow it hard. and ask yourself - for real- what is best for my child?

I'll say it again-

"WHAT IS BEST FOR MY CHILD?"

notice I did not say " what is best for ME?" or " what would make me feel best?"

so get over yourself for a minute.

when you really ask what is best for your child- not for YOU, you can finally figure out if you need to teach them at home, or put them into a school.

The truth is for US, that school is able to provide a different kind of structure and social situation that I can never provide. When you have a kid who needs to be taught social cues, he needs to learn how to be IN this world- he needs to learn more than just what books can teach us. He needs to learn standing in line, or how to tune out lots of voices, or to understand a judging " look". he needs to understand that his needs don't always come first. He needs to know what it feels like to be misunderstood, or pushed beyond what he thinks, or what *I* think he's actually capable of.
so there's that- but there's also this-

I can't afford a speech therapist, an occupational therapist, I can't be structured enough. no matter how much try. I can't hire someone to come work with my son weekly to talk about what it means to be autistic. To teach him what is going on inside his brain and why the things that are hard for him are there and why the things that are brilliant about him are there.

When you have a child with a disability- or a special need- you need more than what you can give.
That's hard. I know that's a hard pill to swallow because as a parent you want to think you are enough. Guess what? you're not. Not if you want to give them every single possible help and advantage available. and you do. I know you do.

There are many reasons to gripe about the public school system. I understand that. No one will ever do it perfectly. People will fail us. school will fail us because there are people there. humans. we don't always know the best way. But when it comes down to it, I am being honest with myself about my kid's needs and my strengths and weaknesses and what I can give. and if it's not enough then I will swallow my pride and ask for help, because it's not about me.
and it's not about you . it's about them.
this is your job- not to control everything that comes into your child's world, but to help them be strong enough to be out there in it.

The one thing I've learned about having a child with autism, is that every family is different (seems obvious doesn't it?) What I mean is, I am less judgmental of how other families do it . Because I understand now that no matter how much you plan,or how strong your ideas are about parenting or schooling .. You don't know anything until you've met your child.






*Ifind that phrase a little funny...don't we all have " special needs" ?

September is coming to a close

Departing summer hath assumed
An aspect tenderly illumed,
The gentlest look of spring;
That calls from yonder leafy shade
Unfaded, yet prepared to fade,
A timely carolling.
- William Wordsworth, September

*roar*

after two months of dry brushes
i have returned to say

" I am a woman"

I've gotten a lot of..."input" when I paint nudes. I find this curious. Why can we go to a museum and admire any number of paintings and sculptures of nudes , yet blush when I post a painting like this one? is it because people know me personally?
I'm always asked if my paintings are of myself . Some are intended to be self-portraits, others are not. It is true that my own body is the most familiar to me , the same body I have tried to escape from the time I was 11 years old. I think a lot of women feel this way. Never content with their curves or lack of curves. always comparing. never feeling comfortable in their own skin...
this month alone I have had three friends have to face cancer on one level or another. and it has me thinking about what it means to be a woman in this skin of ours.

there will always be people who see breasts or a backside and blush and giggle. and that's fine I guess. but if that's all you see you are missing the point.

not it

i am not super mom.

i don't know what to do

i feel my life stretched out before me and the autism road is a long one and never gets easier. we only change lanes.

i have no idea what i'm doing.
today my world is very small

just me and them and that's all we are going to do

that's it.

memory

........i was remembering the feeling of being pulled through the water..........my long hair dragging in the waves behind me
the feeling of being heavy and light at the same time.....

if you forget who you are...

...wait for autumn

i like olives

i like olives. i do not like licorice. I find that I am often friends with non-loving olive people and licorice-liking people. do I do it on purpose? is it a personality-type?

july 7th 2007 ~ on losing my mother in law to cancer and battling my son's autism

there are days when i ask how ....
when i ask how God could have mistaken me for some sort of warrior.. someone who has it together who will lead who will stand up who will not become daunted
i am just so tired
i am just so angry
i want to choose option "D" - only to find...
it's not available
not a an option

for me
eventually the sun comes out and i wake up and see the green things poking out of the ground
i think of you
i think about how you took the earth and made beautiful things out of it
i think about how you just took what you were given even when it was so bitter
and in spite of all that you believed in me
when I didn't

you're words still carry me
can i tell you that? can someone whisper it in your ear?
can someone please tell you that i am not forgetting
i am taking what you gave me
i won't sleep forever
i will wake with the sun and go back out and fight
for him
for you

June 4th 2008~ Autism

WEDNESDAY, JUNE 4, 2008
rise & fall
"what hurts?...show me what hurts"
how many times I- as the mommy ask my crying boy this question?
(maybe - if he can tell me- I can fix it)
this morning that question floats through my own self.

"what hurts?..show me what hurts?"

but I don't know how to answer

It just does and I don't know why

It hits me like a wave and I can only push up and down through it to keep breathing
There is no time to find out why or where it came from

maybe I can tell you later, when the waves stop

will they ever stop?

8-28-10 good things

periwinkle

the moment when you first realize you can smell autumn

new paint brushes

the first bite of pie ( that little triangle tip)

laying very still on the slant of a hill and imagining everything around you tipping, you staying one with the ground

the sound of a football game

the shapes of all the spaces between leaves and branches

light:
1 hour before the sun sets in the summer
early in the morning during the spring
right before it will storm

watching people in activity and thought when they are not aware of your eyes on them

finding the perfect song
and listening over
and over again

swings.

being in love

mail

my uncle's porch

a beautiful memory that only you and one other person share

floating

laughing with someone that knows you so much that you didn't even have to voice the thing you are both laughing about

being known


wind chimes

belonging

smelling pine needles

blowing dandelion wishes

holding hands

pockets in dresses

aprons

paint on my fingers and arms..and face......and in my hair

being naked

dancing

singing when I'm alone

words

bottom lips

how things look when they are falling

red shoes

surprises

secrets

1/3 of the way into a painting

lines

sex

the way melted chocolate turns and folds over itself as it pours into a bowl

christmas lights when seen through teary eyes

the sound of horse hooves

1st kisses

when words sound like what they mean

you

how the woods can be dark inside even when it's daytime

hope

spreading frosting

fingers in the water while riding in a moving boat

letting wind mess up your hair

high heels

the eyes of someone you love the second they recognize you

1-1-11 ~ a letter to my fantastic little brother

to my most awesome little brother

i'm not even sure when you grew up. i know i missed most of it. but suddenly here you are, and it seems like you did it all without any help from anyone
my favorite thing about you is your optimism . how committed you are to believing in something that you want to see happen.
to anyone that thinks you'll give up or change your mind...they just don't know you that well. I know that once you set your mind on something you will find a way to make it happen. I believe in you, and I know that if you really want to do this, make it work in LA and find work in the film industry you will.
I just hope you can stay strong , even when other people don't support you, or try to pressure you to take the easy way out.
If any of us seem to be pulling for you to stay here , or come back sooner than you'd like, remind yourself htat it isn't because we don't beive in you, i'ts only that we are selfish and want you around.
i hope it goes without saying, but I'll say it anyway- that if you do ever decide you don't like where you are, for any reason at all, it will not be a failure on your part, but rather another direction you're choosing to go. Be careful that you don't make decisions based on what other people will think, but base them on what is best for you and brittany and your dreams of what you want in this life

I'm really proud of who you are. I think you are amazing. Determined, optimistic dreamer . you've never lost the ability to be excited and I love that about you.
keep doing the best you can.
i love you to the moon and back

"This is the press of a bashful hand—this is the float and odor of hair;
This is the touch of my lips to yours—this is the murmur of yearning;
This is the far-off depth and height reflecting my own face;
This is the thoughtful merge of myself, and the outlet again."

walt whitman~ leaves of grass

"A child said, What is the grass? fetching it to me with full hands;
How could I answer the child? I do not know what it is, any more than he.

I guess it must be the flag of my disposition, out of hopeful green stuff woven.

Or I guess it is the handkerchief of the Lord,
A scented gift and remembrancer, designedly dropt,
Bearing the owner’s name someway in the corners, that we may see and remark, and say, Whose?"

~walt whitman, leaves of grass

in response to the article "the reporter" ran

this is the article the paper ran:

http://www.wisinfo.com/apps/pbcs.dll/article?AID=2011110814024

this is what it SHOULD have said:

Explaining what is behind my paintings is deeply personal . i hesitate to tell too much of the story behind each piece because i want it to resonate with people as part of their own story not mine.

i've been painting professionally for 15 years, and while i love the challenge of creating custom pieces for people and collaborating with them in that process..
but it's the pieces I do for myself that are the most precious to me, and when someone else connects to those pieces it is always the most overwhelming and amazing feeling.
to do a solo show like this allowed me to paint solely for myself without a client in mind or any goal other than the working out of my own story
which is a very liberating wonderful thing, and also extremely terrifying! But I think allowing yourself to be vulnerable in your art is what draws others to it. People relate to that

I approach a series of paintings as an opportunity to tell a story. Which means I often paint the whole series in a marathon frenzy. this exhibit has 32 paintings in it and 21 of those were painted in 30 days time. I prefer to work that way , it's the same way a writer waits for inspiration and then locks themselves away until they get it all down on paper.
I really wanted to be honest with myself with this series. Shadow of the moon was inspired by something that tends to be a bit of a taboo subject for a lot of women. Isolation. I was really not intending to make that aspect of this story public..but in a conversation with a close friend, I was revealing a bit of what was behind some of these paintings and she encouraged me to share it openly because it's something that woman are often afraid to admit, we think if we talk about it it implies we are unhappy in our choices or regret the path we are on, and I don't think that's necessarily the case. there are many seasons in life, when you get married and have children you know you will be busy, but you never anticipate the level of isolation that can still come even during such a busy season of life.
My husband and I have three children. ages 9,7 and 3. Our oldest is Autistic which has obviously added another level of "busy" to our life. It's not something we were very open about initially because we do not want it to overshadow who he is or focus on any negatives. But it is a big part of our life and it is a challenge .It is often easier to stay home and not put our family " out there" . it's hard for us to make the time to pursue our hobbies or even time alone. for the first few years I really put my art on the back-burner and didn't feel like I could give my energy to that AND my children.I went through a time when I really questioned if pursuing painting was a valid endeavor. And it occurred to me that there is unnecessary beauty in the world. God did not have to make it that way..he is an artist. It was a beautiful moment and sort of gave me that permission I was looking for. Painting is a passion and a way for me to pay homage to all that beauty around us.
I got to a point when I decided that it was a positive thing to show them that pursuing something you love is important. Instead of building my studio in the basement as we originally planned I took over our small sunroom so that I could create and still be accessible to them and also to let them be involved as well. All of the kids are very interested in art and often paint along side of me. But so far our oldest Malachi seems to be the most interested in being an artist. He is very talented and paints on his own, but also collaborates with me on paintings which has been a really special process and we both really enjoy it.
there are many seasons in life. I'm trying to be fully present in each one as they come, and learning that even though your journey is your own, you are not as alone as you think you are. What a beautiful thing

surprising generosity

this one time i was complaining on facebook about how i don't have a decent easel.
i have been using this old children's easel that is actually a chalkboard. it didn't even have a place to rest a canvas so I screwed a leftover chunk of wood to it from some broken something or other.

Then the other day the bottom piece broke and fell out, so it's quite precarious..might crumble any day.

It's also not big enough, so I put a piece of peg board on it to try to find more space for hanging things I'm working on.

I also bought this tiny umbrella one,

but found out quickly that it falls down constantly and is always crooked no matter how many times I adjust it. *sigh*

so my friend Kris said he could totally make me an easel. fantastic! but we didn't talk out the details yet...

so last night, Kris comes to my opening night of my exhibit and what does he bring me? the most kick-ass easel you have every laid eyes on.

I would have been happy with three barn boards nailed together. But no. he made THIS:

I can not even get over this amazing gift . I just keep staring at it. I don't even want to get paint on it it's so blasted beautiful
the pictures do NOT do it justice. it's incredible

shadow of the moon ~ opening night

i don't even have words really.
i was afraid no one would come and you all blew me away! so overwhelming to hear such heartfelt responses to my paintings. it's indescribable to put something so precious to your heart "out there" and have people connect to it.

I am humbled and lifted up all in one fell swoop!

dress up

today i will take my little sister

i will watch as she puts on her pretty wedding dress and stands and looks in the mirror.

i will hold her little veil on her head - just so.

i will stand back and admire her

her beauty

her youth

her hope

her joy

her love

her *being* loved


and i can't help but remember her the age my daughter is now. small and sweet with her tiny lips and big brown eyes while i dress her up like my little dolly

no such time.

people always told me " you'll know when the time is right"

or maybe you won't. maybe you won't know the right time, OR the right words, but suddenly there you are. and you don't feel you have any other choice.



tonight i took my boys to see the fireworks from my sister's front lawn.

shortly after getting there malachi started demanding Ivan play pretend with him. they always pretend to play whatever they are currently into, right now it means " angry birds" that silly game everyone has on their computers and IPODS
Generally Ivan loves to coach Malachi along in his pretend -escapades. But tonight...tonight he had REAL playmates. His cousins and two other fun little boys his age. Ivan really wanted to play REAL games..not just cater to Malachi.
Suddenly Malachi is screaming and bossing Ivan, commanding him to play with him. And Ivan? Ivan starts weeping. WEEPING. And when pressed- what does he say " I don't know what to do!!!!"
and you know why? because he didn't WANT to play with Malachi. He wanted to play with his peers. But he felt GUILT. guilt for not playing the way his brother was demanding him to play. Guilt for not WANTING to be with Malachi and cater to him.
he SOBBED . my boy just sobbed and sobbed. He wouldn't play with malachi, but now he could not even play with his peers because he was so beside himself with grief over his situation.

and I realized-
there's never a good time dammit.


So I walked my sobbing 7 year old boy to the van. and I said " Ivan. I need to talk to you. Malachi is not like the other kids. Remember how we talked about everyone being different? and some people's brains do things and think things differently than others? " Ivan interrupted and said " yes! I KNOW.." and tried to walk away, so I said " No. Ivan, I need you to understand. Malachi has an autistic brain. Ivan. Malachi has autism. And he's not trying to make you feel bad. He just doesn't know how to play with the other kids. He doesn't understand. "
Ivan just stood there. defensive angry scowl set on his face and said " I don't want to talk anymore- can I go now!"
and I said " Ivan. I need you to hear me. This is not your fault. You do not have to play the game with malachi right now. You can play with your friends and you don't have to take care of Malachi. *I* will take care of Malachi. Ok? you don't have to worry about him"
his lip started to tremble. and he swallowed hard and nodded his head. relief. mom will do it.
mom will take care of him. I can play.

and he ran off to join his friends.

I went back and sat next to malachi. Looked up at the fireworks and said " this one is for you" and we watched it explode in the sky.

bee's knees and elbows in wasp's nests

the woman in the blue car in front of me decided to brush her hair. it must have been quite a mess because she need BOTH hands for the job. I watch as one hand held a clump and the other tried to brush through it. the ENTIRE way down Johnson street. stop & go lights...over the bridge..all the while both hands off the steering wheel attending to what seems to be the most snarled head of hair that ever was. How does one's hair even get that matted? did she just get off a motorcycle? lose a bubble gum blowing contest - in the wind?
I continue to follow her all the way down johnson and then all the way down park ave. The entire time..both hands in her hair, eyes in the rear view mirror.
I don't know whether to be horrified or impressed. that lady has some talented knees.

I never understand how people can drive with their knees. I have never even considered trying to master that. I guess I just don't really feel motivated to work on a skill that could possibly end up killing me in the process.
it's like people who can ride a bike with no hands.just riding along without using the handlebars? why? obviously you're trying to show off. get a unicycle hot stuff!
I could never do it. I'd jack-knife that bike faster than you can say " elbow cast" .
of course I've never been that good at riding bikes anyway. I didn't learn until the 3rd grade. it was such a huge source of humiliation and shame for me. I remember being at a friend's house and trying to make up excuses for why we shouldn't ride bikes...
I still don't feel comfortable on one. There are too many cars around! where am I supposed to ride? what are the rules about turning? who invented those torturous seats?

it's a wonder anyone gets anywhere at all.

exit

Ivan just walked down from upstairs with wide eyes and calmly said
" mom. there is a black bird upstairs"

please let this is not some sort of omen.

sure enough- darn bird snuck in through the vent in the room I have stripped raw to it's bones on our second floor.

after some ridiculousness he finally calmed down- LOOKED- and saw that the window was wide open for him, and simply flew out.

reminding me of how often we are too worked up to actually SEE our exit that is so clearly lit.

life with autism

Autism- or - as "they" call it officially now- Autism Spectrum Disorder (same thing) it is not a shameful thing. it's different than some people, but not WRONG.

The first dr we saw when Malachi was diagnosed was kind of an asshole.
I was totally keeping it together and I asked him as calmly as could be " if this was YOUR son, what would you do?"
he looked at me and said " first..I would cry."

part of me gets it- deal with the emotional response. yes. I understand. But the other part of me is thinking- CRY??!! cry? that is your response? because it's a horrible diagnosis?? My son doesn't have cancer! he has autism! it's a learning style not a death sentence! fuck off!

But we go through all sorts of emotions over and over don't we?
it's a constant thing . one day you accept it and you move on and sometimes weeks go by and you don't even think about autism.
other times you barely survive 5 minutes at a time and all you can think about is the autism and how it's affecting your life and the lives of the other family members. and you have days when you are happy and embrace who your child is, and you have days when you DO want to cry. and that's ok too.
what it comes down to is just simply- no parent wants their child to struggle or have pain. on ANY level. EVER.
it's not any different for a parent of a child with autism than it is for any other parent. It's only that parents of kids who are dealing with something that is obvious and in your face- think about it a little more often.

when is the world just going to get to the point where we can accept that not only do some people not fit the " norm" but NO ONE DOES. there IS no normal.

lets just love each other for our differences . can't we?
give more understanding
give more patience
give more love

dad

my birthday card from my dad this year :

"thanks for being there for the entire family-
fashion coordinator, counselor, comedian, artist.
We love you and are so proud of you"

just be.

yesterday I was sitting in the backyard with my kids and there was no breeze at all.
not a stir in the air. As I looked up,I saw one single dandelion " wish" quietly flying along, just like it was riding an unseen river, bobbing and swaying and turning..like the tiniest umbrella . with no help from big great all controlling MAN. with no help from us that little seed just obeys and moves and will settle and grow. it will not ask for anything at all. it will just be. and then when it's time is up it will die. it will not ask " why" .

the river

there's this river near my parents house i am madly in love with
every time i see it i want to fling my body into it
a river is never in the same mood twice
it is alive

who's your support ?

i hate exercising. i hate it.
but i hate being fat even more

so how do you motivate yourself? how do you get through it? i think we're supposed to be positive and have a "support system" and all that...right? i'm pretty sure we're not supposed to call ourselves names and degrade ourselves in our head right? well so far it's working for me.
i am the meanest drill sergeant in my head. when i feel like i can't make that last mile or so i've been known to chant ' fatty fatty 2x4 can't get through the kitchen door' in my head. wrong?
probably.
one thing that really DOES help is music. music is the key. there have been times when i never would have gotten through my run without those words and those beats.

on a dark rainy day the postal service ran my 4 miles with me
another day it's moby, even the arcade fire jogged with me one day.
my husband prefers to listen to screamy violent music when he runs. I get it...but most of the time i choose friends that aren't yelling. because i do enough yelling in my own head.

mother's day

this morning i sat on the front steps and watched them run, scooter and bike back and forth down the sidewalk. how perfect they are.

this afternoon I saw a chubby little boy , around 11 years old with rosy cheeks carefully selecting dandelions from his front yard and placing them into his other hand already full with a big yellow bouquet. perfect.

driving along I watched as a husband and wife -well into their 60's- walked together hand in hand, arms swinging ... like teenagers newly in love.
perfect <3

bottle the moments

they slip away

do what needs to be done

"...I want first of all - in fact, as an end to these other desires - to be at peace with myself. I want a singleness of eye, a purity of intention, a central cor to my life that will enable me to carry out these obligations and activities as well as I can. I want, in fact - to borrow from the language of the saints -to live 'in grace' as much of the time as possible. I am not using this term in a strictly theological sense. By grace I mean an inner harmony, essentially spiritual, which can be translated into outward harmony..."
— Anne Morrow Lindbergh

remember that one time I freaked out and tried to kill a room all by myself? well I started with the floor...

so I went a little insane and ripped out the carpet like a wild sweaty monster
but it looked like this:

so I scraped and scraped until I couldn't feel my hands but it still looked like this:

so I bought some adhesive remover and scrubbed like a maniac
and then I took too much of the finish off, so of course I had to put more stain on.
so it's not perfect. it's still not super even. BUT
I like it.
it's clean. it's smooth. it has character. and most of all-
it is not carpet filled with plaster dust. WIN!

some things happened

and I've had it. I've just HAD IT.

the room upstairs that Malachi's swing hangs in is very old crumbly plaster. it was cracked when we moved here, but then with all the swinging this happened

And every day there is more and more little chunks of plaster and dust caked into the carpet.
one day I actually found the boys upstairs playing pretend WITH THE PLASTER PIECES! *sigh*
Jesse is convinced we can just patch it. um........
it is falling apart.
yes. putting swings in a bedroom that small where the kids feet can hit the wall might sound silly... Ok. really stupid. BUT! understand that swinging is critical to Malachi. He has found it regulates him and helps him process. he says " I need to think!!" and swings and it helps him. he swings several times a day and he can't always do it outside. So no. I don't regret hanging the swings up there.
but now here we are. plaster caked carpet and falling apart walls. And my husband wants NOTHING to do with this project.
nothing.

so ...some things happened which I won't get into......
and when I looked in the closet and saw this nice floor...

I just ..well..I think I blacked out because when I realized what was going on I already had half the carpet torn out.

and many hours later. hands bleeding and numb this is where I am at

please someone tell me if I can just scrub this off with some happy soft bubbles! yes?
perhaps I can dump some acid on there?

because literally
I can barely feel my hands as I type this.
people who glue carpet down should be tortured.

and I haven't even gotten to the sledgehammering the walls part!

I am now begging.
anyone?
...............
anyone?
............
............
..

remember that one time?

when I grew little babies in my belly?

best love scene ever? (Punch Drunk Love)

yes

i just freaked out and ate a piece of chocolate cake

it doesn't matter why. i mean- it does. but it doesn't matter to you. so never mind about that.
ok- yes. it might have something to do with that book over there - the one that I worked really hard on but the paint threatens to peel off of when you turn the pages. yes.
or it could be The List that the book sits upon that I am pretending to ignore- but can't. and yes...it could be you. or you. but I won't burden you with that. and yes. it could very well be THAT..and it could also be THIS. so then i slipped in my red socks and bumped Violet's watercolors spilling the painty water cup onto my pajamaed leg and the water ran precariously close the the plugged-in hair dryer. yes. it is in my studio. on the floor. because i'm working dammmit! i'm working on all these things that no one will even care about but i can't seem to keep myself from creating them. yes. it could be a lot about that.
it also could be because i'm supposed to be doing things and being places and i'm not.
it could be the thing i didn't pick up at the place yet. or the calories i did not yet burn on the treadmill where i have not yet dripped my sweat on. i will. i will.
i will after i do that. and this. and make that. and finish that. and fill out the boxes with the words and empty the coffee grounds and fold all that laundry and decide this and that. and punch myself in the face for not doing any of that and instead doing this.
not THIS- as in typing this- but THIS..this. this this this this.

and that's why.

" to be where you are" a picture book by Nina Schmidt