Autism Awareness Day

[annaswirls]

Many of you know that I have been directly touched by autism (okay I know I am a bit autistic myself!) and know that many other poets and writers here are as well. I have dedicated a good portion of my life to advocating for those with developmental disabilities.


So.

Here is a thread.

Share.

Personal stories.

Things anyone can do.

Poems on the subject.

Crazy things your kids do that crack you up or make you crazy.

Advice for those who come in contact with our kids being themselves...and don't quite get it (trust me, I did not get it until I GOT it.)

Answer the poll. It is anonymous. Pick as many of the options as are true.

 

[annaswirls]

http://www.autismvotes.org/atf/cf/%7B2A179B73-96E2-44C3-8816-1B1C0BE5334B%7D/logo_AV3.gif
Autism Speaks Hails the Introduction of the Landmark Autism Treatment Acceleration Act

Wide-Ranging Legislation Addresses Key Issues Facing the Autism Community, Including Services for Adults and Insurance Reform

NEW YORK, NY (April 2, 2009) – Autism Speaks, the nation’s largest autism science and advocacy organization, today applauded the introduction of the groundbreaking Autism Treatment Acceleration Act (ATAA). Originally drafted by then-Senator Barack Obama and introduced by Senators Richard Durbin (D-IL), Robert Casey (D-PA), and Robert Menendez (D-NJ), ATAA is comprehensive federal legislation that addresses several critical challenges facing the autism community, including increased funding for scientific research, treatment and services. The ATAA incorporates provisions from the Expanding the Promise of Individuals with Autism Act (EPIAA) originally proposed by then-Senator Hillary Clinton (D-NY).

A key section of the bill requires insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorder (ASDs), including coverage of Applied Behavioral Analysis (ABA) therapy – a medically-necessary, evidence-based autism treatment – and assistive communication devices... Read more and take action.... www.autismvotes.org

 

[annaswirls]

Oh I wanted to say that the purpose of the poll is to show the level of impact autism has on many of us, here, there, everywhere.

 

[annaswirls]

at the zoo he might have said

he might have said
by annaswirls©

not the candy not the
gibbon family swing or polar bear splash
but this inflatable room
closed, hum, darkened, it sinks in and covers
we jump and we jump and the laughing!
it is too much perfection to ever leave-
but always
always they call me out
and they call me
out always too soon
they do not understand

and Mother tells me
come this way
and Mother tells me
it is finished it is
finished
she signs with her fingers
speaks slowly
she counts backwards
from five
she tells me
come, come here sweetheart

But I know she means
the place where big sounds bring pain
of squint eye lights and vertigo smells
air touches skin air touches skin
like firework fingers

and they wonder why the screams
why the screams and pulling why
prone refusal across the walk

she must know desperate begging
just put me out
put me out let me out
take you with me
under fingernails and fists
go back back into
the place it was good it was good


instead
she just holds on
holds on
kisses cheek
whisper counts to twenty
we breathe
slow
she holds tighter
holds my pieces together
until they slow down enough
I fall into myself
she carries me through hell

it’s okay baby
it’s okay baby
it’s okay baby

her back strains
under my weight
I am not small

bury all senses in her neck
under hair under her skin
breathe the first scent
dark warm muted
okay
okay
okay

 

[annaswirls]

the elder

the elder
by annaswirls©

For the first time all day,
your will is obeyed here on the banks
of Gunpowder River.

You tell your arm to throw a rock
and your arm does as it is told.
You tell the water to splash,
and the water listens.
Rock and water speak your language.


Last night I had that dream again.
The one where I am awake
and trapped inside a sleeping body
that I cannot control.

I tell my self
Wake up!
I try to call out
Someone please help me.
I will my arm to move, to fall from the bed
to do something to wake me up--

But there is no sound,
no movement.
No control.

My mind is trapped inside of a body
that will not obey.


You keep throwing rocks,
with unintelligible yells of
haah or da bi beeem
or splashemmmmm
flapping your arms
boom ah boom a boomeh haha!

Against doctors orders, I allow you
to continue your preservation. Your obsession.


You jump on pointed toes and yell
Happeeee! Happeeee!

I echo your rocks with my own.
They fill the holes in the water
left by your splash.

It makes you laugh

and I say to your smiling face,
Baby, sometimes Mommy has this dream...

~

We walk down the trail in silence
until you run up from behind me,
rocks in both hands.

You look me in the eye
your monotone voice pleads,
Mommy make ah beeg splash pleeze.
Throw rock make ah beeg
splash pleezem!

It is Mother's day along Gunpowder River.
My son shares his desires with words.
Sentences even.
I want for nothing.

.......................

my god he has come so far since Mother's Day 2005..... still loves to make a spash though

 

[KillerMuffin]

We just had an epilepsy awareness day last week. No one really noticed. I hope it goes much better for you and autism.

 

[annaswirls]

Five Wagons of Hickory Nuts

Five Wagons of Hickory Nuts
by annaswirls©

They tell me,
Your whole life
was getting ready for this.

My son makes the leaves rain
and his voice growls a low thunder.
Eyes closed, I fall back
into the spin of the teal princess.
Her gown fills with air
and long sleeves float like ribbons.

Today we fill five wagons with hickory nuts
one bucket at a time.

They tell me,
God gives special children like him
to people like you for a reason.

I once hid
in my sister’s closet
and squatted over the mirror
while studying the diagram
in her Women’s Health textbook.
I touched the places they said
were supposed to feel good and wondered
when my blood would start.

They tell me,
You are a Saint, woman
I could never do it.

We fill five wagons with hickory nuts.
We use two hands.
We use one shovel.

The baby calls me Mommy Princess
but I am not,
not even a Saint.

 

[annaswirls]

We just had an epilepsy awareness day last week. No one really noticed. I hope it goes much better for you and autism.

Thanks! Epilepsy and autism often go hand in hand. One of my best friend's daughters has both. I think that the disability community needs to stick together. I am sorry I missed the announcement and recognition of Epilepsy Awareness day last week. Our new local non-profit is inclusive, not just autism, so every week is awareness (except when we are hiding in temporary tunnels of denial )

 

[WickedEve]

Interesting to see this thread here today. I was just talking with Hugo last night about some major problems with Katy, and that I wasn't sure what to do next or where to turn to. I know some of you know that I have an autistic daughter. I've written some poems about Katy that I'll share later.

 

[annaswirls]

Interesting to see this thread here today. I was just talking with Hugo last night about some major problems with Katy, and that I wasn't sure what to do next or where to turn to. I know some of you know that I have an autistic daughter. I've written some poems about Katy that I'll share later.

I am sorry about the new problems, they tend to wax and wane. Let me know if you want a sympathetic (not pitying ) ear. Yeah that you have a supportive partner and yippee that you will share your poems here! I love Ladybug Egg!

 

[WickedEve]

These are older poems of mine. Katy would have been only a few years old at the time I wrote them. Forgive the writing. I still had a lot to learn back in '03. And probably still do. lol

The first poem is about Katy's night terrors, which her dad used to have the same problem. Fortunately, she's past that now.

The second poem is also about the difficulties at night and my frustration with getting no help from her dad. This would have been during the time we were separated. I've mostly raised my girls alone. For those who don't know, the ex-husband died in 2006, so I'm really raising the kids all alone now. But do I have great parents who are there for me as much as possible. And now I also have a Hugo.

Katy

When terror thrashes night,
my gentle words are absorbed,
acidic stream of syllables.

Come back to bed.
Let me hold you.

You keep teddy close.
Unaffected, unknowing,
you sleep.
I see the sunrise.

Day leaves me wanting night.
There is need for slumber eyes,
though darkness is my fear.

In light you spin and never stop,
my little one, wild,
tearing at mother's flesh.

You empty pantries
with obsession,
hiding ears in hands
when caught.

Hard against your seat,
forward then back,
till you hear my voice.

Listen to me.
I love you.


_______________________

Autistic Slumber

Little words gather
to reach God. I topple them
in mid climb when I remember
there's nowhere for them to go.
Heaven faded years ago.

Where's her father
in repetitious night? If I can't talk to God,
then let me have Daddy's ear —

a handful of seeded prayers
whispered near his lobe.
Little words may not find God,
but perhaps they'll take root in Daddy.

 

[WickedEve]

This poem is from 2004 and it's about Katy's obession with monkeys. She will fixate on something and stick with it for a long time. She asks me several times a day if I love her. This has been going on for about three years now. So lots of love talk and monkey talk in my house. lol


In Her Own Special Way

What's the tree saying?
Does the rock love me?

She chews her blonde
and runs from yellow silence
that could scratch the morning.

Momma holds hand at 7:10

They cross to the stop,
to the green hill
where creepers hide in pipes
and flashlights sparkle dew.

Little bus rumbles at 7:20

Teacher shows her gibbons.
There are gibbon images
and all day
gibbon-speak.

There are only gibbons.

Purple gibbon waits
on 2:10 go-round wheels.
Hyper joy stumbles
across the road,

and everything sparkles
like green hill dew.

 

[WickedEve]

Please Don't Feed The Flowers
2004

I heard the stems snap.
Tiny enthusiasm picking flowers
till "petals bite" shrunk her from my violets.

Six o'clock shadows
brought mother goose down
from an upper shelf.
Hungry flowers were uprooted
long before slumber.

Now morning runs barefooted
as Katy leaps over dandelions
that want nothing more than to eat her toes.

I know this because she told me so.

 

[UnderYourSpell]

I do know I am 'different' I don't know if it has a name or if I fit into anyone's categories. I realise now it's why my mother rejected me in the way that she did .... she couldn't cope, she had no experience of coping with one such as I. Maybe I shouldn't even be in this thread because I learnt enough to walk alone and I suppose my disability is nowhere as bad as many. Much of my childhood is blocked the good mostly which is very odd or perhaps there wasn't that much good to remember. I just wish whatever made me block the good would take the bad too and stop it bloody haunting me

 

[WickedEve]

I do know I am 'different'

Yes, you are. You need to be normal like me and sit on a spiky dildo chair.

Hey, if you're living your life and you're basically happy, then you're doing better than many people out there. As far as blocking your childhood, my mom lost nearly the first 9 years of her life (after her dad died) and never regained any of those memories. She's 67 now and it still torments her that she can't remember him.

 

[UnderYourSpell]

Yes, you are. You need to be normal like me and sit on a spiky dildo chair.

Hey, if you're living your life and you're basically happy, then you're doing better than many people out there. As far as blocking your childhood, my mom lost nearly the first 9 years of her life (after her dad died) and never regained any of those memories. She's 67 now and it still torments her that she can't remember him.

sometimes I'm happy sometimes I'm not I wonder how much is a facade a shield I have built up over the years ... my protection if you like. When I was young nobody got any help with such things you sank or swam. But it's always there I can't escape it ever, nature or nuture I've never known bit of both I suppose. If I had had wonderful mothering like you do for your children what could I have been? but can't live in what might have beens I'm mostly pretty strong but it's odd more and more these days I want to be alone and that hurts Ron. Sorry I've hijacked a link I've really no business to be in I was just looking for answers when I don't even really know the questions

 

[WickedEve]

sometimes I'm happy sometimes I'm not I wonder how much is a facade a shield I have built up over the years ... my protection if you like. When I was young nobody got any help with such things you sank or swam. But it's always there I can't escape it ever, nature or nuture I've never known bit of both I suppose. If I had had wonderful mothering like you do for your children what could I have been? but can't live in what might have beens I'm mostly pretty strong but it's odd more and more these days I want to be alone and that hurts Ron. Sorry I've hijacked a link I've really no business to be in I was just looking for answers when I don't even really know the questions

Have you ever talked about any of this with your doctor or any professional?
You're right about not getting much help back years ago. I remember grade school in the 70s. Kids were called "slow." As a child, I'd sit in the corner and read to two of my disabled classmates. But so much more is known about disabilities now. There is more help in the schools. My kids are in a small town school, which has limited resources, so it took a lot of effort on my part to get more help. One mom can make a difference and you do have to fight for your child. Because of my love and support for Katy, several special ed teachers took classes on autism, T/Tac came into the school and met with the teachers and me. Lots of other improvements were made. It took a lot of meetings with teachers, the principal, superintendent, phone calls, emails, contacting other organizations, etc. I wish some other mom had done some of the work earlier. It could have benefited Katy in her earlier years. At least there is more help now for kids coming into the school. So Annie, there are things you can do. You can make things happen for you. Do your research, reach out to people, seek help.

 

[Angeline]

I think I wrote here before about Samuel (not his real name). At the time I worked with him (as a teacher and mentor), he was 17. Very pale, thinning blond hair, large gentle blue eyes. Samuel was considered seriously autistic (and borderline intellectually disabled), enough that he'd need to be in some kind of supervised care all his life.

If he chose, Samuel could completely ignore you, really make you feel you weren't there. Other times he wanted to be engaged with someone he trusted in some activity: cooking or sharing our respective treasures (his matchbox cars, my glasses). Sometimes he'd sit quietly next to me and hold my hand. He has a loud excited laugh, and loves to give and get "noogies," (and Samuel's noogies hurt, they are way too hard!). He has elaborate fantasies that he'd build into whatever else he was doing. Sometimes I took him to the Y and we'd shoot baskets. He'd be muttering the whole time about Scooby Doo and vampires and whoever else was worked into the story in his head.

His favorite activity is karate and he loves to go to lessons twice a week. Once we were driving there and the traffic was heavy, so I took a different route. Samuel got worried that we weren't going to his class, so he tried to grab the wheel away from me. We had to pull over so I could try to make him understand that this is dangerous behavior, and if he did it again, no more karate lessons. I hated sounding so harsh but sometimes it's the only way to get him to listen and avoid hurting us both.

Samuel was rejected at birth. He has been in group homes all his life. He has no idea who his parents are and sometimes articulates, with a lot of sadness in his voice, that he wants to know who his mom and dad are. Having only a state-appointed guardian to approve anything for him made for some interesting situations. As he got tinto his teens and the hormones started flying, Samuel started trying to touch women innappropriately. He was following his instincts; he didn't really understand why it was wrong--well beyond our standard instruction "we do not touch others without their permission."

My boss and I agreed that Samuel needed to learn how to um take care of his needs. We ordered a tape where a young man explains what masturbation is and shows how it's done. It's not really porn, just an honest approach to helping kids like Samuel help themselves. We explained that this was something private that he could do to help him feel better when he was frustrated. We hooked up a dvd player in his bedroom, put on the tape and left him alone, behind closed doors to study it. An hour later he finally came out (fully dressed) and with a huge smile yelling "I did it!" He then insisted on going off to take a long bath and has been an enthusiastic bather ever since. And no more inappropriate touching, either. That whole incident made me cry, like he was a bird learning to fly out of the nest.

When Samuel turned 18, he could no longer stay in the teen group home. We were worried. It's very easy to take advantage of Samuel, and we prayed he would not end up in a home with any predatory men. As it turned out our prayers were answered. Space was found for Samuel in a home with three other young men, two of whom have Down Syndrome and the other also autistic like Samuel. It's just a small house in the community that is staffed at all times by caregivers. Two of the young men in the house are former friends of his from school. I should also mention that Samuel loves to sing and has a beautiful voice. He can pick up lyrics instantly and is always a hit at holiday parties. One of his housemates is a good singer, too. His mother lives nearby and she spends a lot of time doing activities with her son and Samuel. Both boys are very active in their church choir.

I thought I'd write about Samuel because he is someone autistic who I really do love.

 

[UnderYourSpell]

Have you ever talked about any of this with your doctor or any professional?
You're right about not getting much help back years ago. I remember grade school in the 70s. Kids were called "slow." As a child, I'd sit in the corner and read to two of my disabled classmates. But so much more is known about disabilities now. There is more help in the schools. My kids are in a small town school, which has limited resources, so it took a lot of effort on my part to get more help. One mom can make a difference and you do have to fight for your child. Because of my love and support for Katy, several special ed teachers took classes on autism, T/Tac came into the school and met with the teachers and me. Lots of other improvements were made. It took a lot of meetings with teachers, the principal, superintendent, phone calls, emails, contacting other organizations, etc. I wish some other mom had done some of the work earlier. It could have benefited Katy in her earlier years. At least there is more help now for kids coming into the school. So Annie, there are things you can do. You can make things happen for you. Do your research, reach out to people, seek help.

I wasn't slow in school in fact the complete opposite I was far too clever for a little country school room. I could read before I was 5, books were my refuge all I ever did was hide myself away and read read read anything and everything I could lay my hands on. I found out early on that other kids don't like the brainy ones especially the weak and puny ones with no skills for fighting back. I was the first kid in that school to pass the exam called the 11plus which meant I was eligible to go College when I was 12. I've had counselling and that left me worse off than I was before oh yes and I was forced to see a phsychiatrist in school when I made the stupid mistake of telling and my mother denied it and branded me a liar and not right in the head. I never told anyone again till I was in my 30s

 

[annaswirls]

you are such an awesome mother

Please Don't Feed The Flowers
2004

I heard the stems snap.
Tiny enthusiasm picking flowers
till "petals bite" shrunk her from my violets.

Six o'clock shadows
brought mother goose down
from an upper shelf.
Hungry flowers were uprooted
long before slumber.

Now morning runs barefooted
as Katy leaps over dandelions
that want nothing more than to eat her toes.

I know this because she told me so.

 

[annaswirls]

sometimes I'm happy sometimes I'm not I wonder how much is a facade a shield I have built up over the years ... my protection if you like. When I was young nobody got any help with such things you sank or swam. But it's always there I can't escape it ever, nature or nuture I've never known bit of both I suppose. If I had had wonderful mothering like you do for your children what could I have been? but can't live in what might have beens I'm mostly pretty strong but it's odd more and more these days I want to be alone and that hurts Ron. Sorry I've hijacked a link I've really no business to be in I was just looking for answers when I don't even really know the questions

Annie, there is no need for apology. Inclusion girlfriend. You got your troubles and you are welcome to share them.

It is okay to want to be alone. Autistic or not, we all need our time to hide away alone. I am sorry you had a rough go of it, but I think you turned out pretty wonderful

Let us know if you find those questions, I have been looking for them too!

 

[annaswirls]

I thought I'd write about Samuel because he is someone autistic who I really do love.

thank you for this story, Ange. I have heard you speak about him before, but this was a whole new twist, new details, all of which give me hope.

and remind me that I am pretty sure adopting special needs kids is in my future.

oy vey

talk me out of it quickly!

 

[Angeline]

thank you for this story, Ange. I have heard you speak about him before, but this was a whole new twist, new details, all of which give me hope.

and remind me that I am pretty sure adopting special needs kids is in my future.

oy vey

talk me out of it quickly!

Well, if you adopt a whole bunch of kids, plus the three you have now, maybe you'll get a show on the Learning Channel. I'd watch!

The thing about Samuel, who is now a young man, is that aside from his obvious pain at being abandoned by his parents, he is a happy, interesting, creative young man. He has a wonderful, sly sense of humor and he is quite smart in his own way. He doesn't miss much though he may not appear to be engaged. I think overall he's a happy person who is hopeful and enjoys life. What more could anyone want for him or herself, ya know? So yes, you should feel hopeful. And I know of autistic adults who have special friends (boyfriends or girlfrends) and one couple in their forties who are married. The approach to dealing with these folks by keeping them out of institutions and helping them succeed in their local communities is wonderful. It's pretty much the way all special needs people (except maybe the aggressive, violent ones) are treated here in Maine. It's a good thing. I think Maine is one of the more progressive states in this.

 

[annaswirls]

Well, if you adopt a whole bunch of kids, plus the three you have now, maybe you'll get a show on the Learning Channel. I'd watch!

Spenser once said, Mom, I think you should have seven more kids and then you can have a show, Vince and Jenn plus Ten.

That got him sent right back to bed, Pronto!

The thing about Samuel, who is now a young man, is that aside from his obvious pain at being abandoned by his parents, he is a happy, interesting, creative young man. He has a wonderful, sly sense of humor and he is quite smart in his own way. He doesn't miss much though he may not appear to be engaged. I think overall he's a happy person who is hopeful and enjoys life. What more could anyone want for him or herself, ya know? So yes, you should feel hopeful. And I know of autistic adults who have special friends (boyfriends or girlfrends) and one couple in their forties who are married. The approach to dealing with these folks by keeping them out of institutions and helping them succeed in their local communities is wonderful. It's pretty much the way all special needs people (except maybe the aggressive, violent ones) are treated here in Maine. It's a good thing. I think Maine is one of the more progressive states in this.

I am moving to Maine

No, just kidding, we are working very hard here to get programs and services in place with our non-profit. I am organizing a 5k for Halloween. Mucho work.

Today at occupaional Therapy, O's therapist had him send me a text message from her cell phone! How frackin cool is that? We were texting each other, from the therapy room to the waiting room. We are really hopeful that typing will open up his world.

Hi Mom Owen

Hi Owen!

Thank you. I love you Mom.

I love you too Owen.
Sigh. Our first electronic conversation. His therapist joked that her boyfriend was going to question who is texting her love messages!


Then he came out to the waiting room with me and wrote another message.

A simple Hi

and my phone rang, and he ran over to see his HI on my phone, and oh my god that BIGGEST SMILE!!!!!!


sigh

okay enough gooing and gaahing about my big kid

 

[Angeline]

Spenser once said, Mom, I think you should have seven more kids and then you can have a show, Vince and Jenn plus Ten.

That got him sent right back to bed, Pronto!



I am moving to Maine

No, just kidding, we are working very hard here to get programs and services in place with our non-profit. I am organizing a 5k for Halloween. Mucho work.

Today at occupaional Therapy, O's therapist had him send me a text message from her cell phone! How frackin cool is that? We were texting each other, from the therapy room to the waiting room. We are really hopeful that typing will open up his world.

Hi Mom Owen

Hi Owen!

Thank you. I love you Mom.

I love you too Owen.
Sigh. Our first electronic conversation. His therapist joked that her boyfriend was going to question who is texting her love messages!


Then he came out to the waiting room with me and wrote another message.

A simple Hi

and my phone rang, and he ran over to see his HI on my phone, and oh my god that BIGGEST SMILE!!!!!!


sigh

okay enough gooing and gaahing about my big kid

There's a woman in Maine you need to know about. Twenty-some years ago she realized that people with intellectual disabilities and autism spectrum disorders and other mental health issues were being treated inhumanely by being institutionalized. And from what I know of life there, from people I worked with who had taught there, it really was inhumane. Anyway she started a local grassroots movement with parents and other interested citizens, some churches, local charities, etc., to begin pulling people out of institutions and into supervised group homes within the communities. Her efforts became the first of many such agencies who oversee this in Maine. Everyone is teachable (as you know) to some degree, and people work or participate in day training programs to the extent they can. People are taught to be as independent as possible. The various agencies have community events to get people together, they do local and special olympics, lots of stuff.

Anywho, she really is a wonderful woman who has accomplished what many insisted was impossible. I'll pm you her name. You should write to her. She's a very good-hearted approachable woman.