together

feeling a little frazzled

husband gone

2nd job

3 kiddos

school school school

picture

so I know

 we can handle this



International

While talking with my son's kindergarten teacher (who's amazing BTW)

I am explaining how I believe 

Al perceives the world around him

Al will often ask me --- "is this in my world?" 

referring to people in proximity

family and very close friends are considered
in "his world"

Things that are not in "his world"

anywhere more than 25 minutes away from our home
 anyone he doesn't know by name
and somewhere he's never been

This doesn't upset him -- it's just not in "his world"

 Think of Al as an "International Student"
here on an assignment

 learning and observing

our customs (eye contact)

our language (figurative speech)

"our rules" for personal space and levels of engagement

He's trying to absorb and take in all the scenery 

However

it's so loud and smells awful

people are annoying and often demanding

everything is either too fast or too slow

it's just not his "world"

Al steps back and takes a breathe

It overwhelms him

but he heads out there every single day

 with a HUGE smile on his face

and he tries so very hard to be in "our world"

school

Update

He LOVES school
Huge Deal
HUGE

He has LOVED school since the very first day
Joy in my Heart
He's teacher is AMAZING

A complete 360 from our preschool nightmare
Delighted

I've been working on the "kinks" behind the scenes

"Hands to Self"
Kindergarten Stuff
(that take a little extra effort to get into "swing" of these concepts)

I couldn't be any happier with the choices I have made this year
SweetRelief

laughable moment ...

I can't tell you why this struck me as so funny?

Autism as a diagnosis hasn't been very funny ... truthfully I haven't been relaxed enough to laugh about "Autism"

Until last night ... listening to my kiddos while they were brushing their teeth

My - "Al, what would you do for a Klondike Bar?"
Al - "I would eat it!"
My - "No, What would you "DO" for a Klondike Bar?"
Al- "It would go in my mouth and then in my tummy."
My - "What would DOOOO for a a Klondike bar?"
Al - "My Mom would get me one."
My- "Nevermind"

I looked at the hubs and we couldn't help it - we were cracking up and with tears in my eyes - "A question NOT to ask a boy with Autism!"  To laugh at Autism felt great - a huge release for me.  The literal meaning of a commercial jingle and the delight of tasty treat -Al gave the correct answer for himself.  I love that it isn't the answers that is expected -Al thinks outside the box.  There are so many thing about Al that bring joy to my heart and Autism is one of them -- it doesn't define him it or make him "special" -- he does that all on his own!

jitters

the first day jitters

are behind us (me)

one of my worse fears

had come true

it's almost like I put it out "into the universe"

and it happened

a child had put their hands on my Al

he couldn't recall all the details

(I don't really want to get into any specifics)

the very first day

I had to email his teacher

 feeling better

but a lot of tears*

just from me
(*hidden)

can't I just keep him home

with me

FOREVER

lump

i know every mother has

that lump in their throat feeling

their baby is off to school

i feel this a hundred time over

for a million different reasons

my son often cannot recall the details of his day

what if someone treats him poorly?

he would be unable to communicate that to me

worries

that he may have a "behavior" or an "outburst"

be overwhelmed with the kids or the noise

that his teacher won't understand that he really is amazing

will the other kids like him?

please don't let him be all alone

that he won't be able to open his lunch by himself

that he might have to pee while on recess

(because we let him pee outside once this summer)

he doesn't always have a firm grasp on appropriate behavior

more more more

worries

this is so overwhelming

along with an extremely lengthily

email i sent to his Kindergarten teacher

detailing

our diagnosis

therapies

progress made

what we are working on

my overall concerns

our goals

An increased desire for learning

to be "present" with his peers

i have MORE worry

MORE MORE MORE MORE

i want to shout it at everyone i can

i am angry

angry at the parents

who don't have these worries

and will NEVER know what this feels like

i have protected my Al so fiercely 

from the day he was born and our eyes first met  

to let him go into the world

without me

***swallowing hard - the lump in my throat

cha-cha changes

changes on the horizon

in just one short week and a couple of days 

two of my three children will be in school full-time

Arlo starting - Myla switching

I feel a great sense of comfort knowing that

my kiddos will be only 3 minutes away

I can be a presence in this school

Exhale

the hubs

has taken on a "second" job

doing amazing things with his god given talent

"No - it's not exotic dancing - wink wink"

Tattooing

He had tattooed for a moment back in our "carefree" days

it was a different scene 

 not nearly as mainstream as it is today

now - you can make a living

hopefully we could get to that place within the year

Other changes 

nothing too exciting with Leo and I

maybe I will finally wean the small football player

take a mommy and me library class

enjoy some "baby days" before I blink and he too is off to school

Still feeling very overwhelmed with decisions for the Fall

extracurriculars - therapy - schedules

I feel like I've come to a conclusion - make a firm stance

only to have someone tell me

it's really "not recommended" and that "studies have shown"

Yada Yada Yada

I am very pulled -- to do what I think is right for my son ... 

Mother knows best ... Right!?

fast forward summer

fast forward summer

a lot to catch up on

Al is doing really great with therapy

speech and OT

swimming amazing

However ... a slight

 hiccup with ABA therapy 

more like a couple of grand worth of co payments

not at all expected

actually assured that we did NOT

 have a co payment

BAM 

5x a week x 3 months = an awful surprise

once school begins

a little worried about over doing it

thinking speech and OT with everyday all day Kindergarten

Oh, my ...

chest is actually tightening

  a small spark of panic feels my heart

ALL DAY
EVERYDAY

My Al

I have so much more to write about

just not enough time

to accomplish this

to be cont...

insert foot here ...

 I've made a mistake

wording and vent

on a previous post

I shouldn't have mentioned

spectrum/function

always hearing from professionals

"high or low"

comparing children

The spectrum doesn't matter

it was not meant

as a judgment

I was upset

that I have put so much

effort into my

playgroup

only to have no one show up

 for the first two weeks

then ... to watch Al just

play all alone

while the older crowd went to play

I had really high hopes for the playgroup

to find a kiddo 

just like my Al

a match

a friend 

I am learning

that there will be

similarities and differences

on and off spectrum

just as no two kids will be alike

neither is autism

there are strengths and weakness in everyone

everywhere on the spectrum

my post was not intended to

measure your child or compared them to mine

it was truly me

just trying to find where we

 "fit-in"

please know how truly

sorry i am if had offended you

Gulp-Sigh-Tear-Breathe

I've been struggling with where WE belong

We started our playgroup

 Al sat all alone in the sandbox

the group was much older than I had expected
also with different needs on the "spectrum"

Same Day

Now on to ... gymnastics

Al has moved up from tiny tumblers to boy's level one

all neuro-typical boys

Al is all over the place

can't wait in line - jumping into pits - not following directions

"semi-typical" boy behavior

tough as a Mom to sit on the bleachers and know ...

I can feel what the other parents are thinking

"Wow, that kids is really out of control"

--never mind-- 

They weren't thinking

I actually heard that or something very close to it
being said right behind me
as Al took cuts once again

I want to scream

thanks for talking shit about my kid

sorry your kid had to wait one extra second

because my kid couldn't

I feel stuck

on one hand it's nice hearing that Al doesn't seem autistic

he MUST be very HIGH functioning 

on the other hand --- it sucks hearing that he

"Seems so NORMAL or doesn't

 look Autistic"

He is normal - He is my son

Gulp- Tear -Gulp -Sigh

Breathe -- over it

  

more therapy!?

we now have ... drum roll ...

eight different therapy appointments per week

and two social skills group

for the remainder of the summer

i know - you are silently judging me

it's too much and why am i putting my child through this

why and am i putting myself through this

this is the kindergarten crunch

we have a limited amount of time before school

to give him the very best start

this is what was recommended by each of our physicians

the most important fact

Al is enjoying himself 

 looks forward to seeing his teachers and therapist

each therapy is "play based"

he is gaining confident and feeling successful

acquirng new skills and learning so much

Happy Al = Happy Momma

(the rest of the details will work themselves out)



Busy .. Busy .. Busy ..

I've been a busy busy busy
little beaver

 Moving forward

Pass the diagnosis

Over the this total sucks phase
 now - let's kick ass at Autism

My hard work has been paying off

We are one of the first families to be approved and receive insurance covered ABA therapy - due to new Autism legislation past last March

Speech and OT therapy - twice a week
Making a lot progress -18month gain on fine motor development

Kindergarten IEP, here we come - all our supports are in place for next Fall

 Received a 400$ scholarship for summer programs

Taking an active role in a support group
http://workforautism.com/

Oh and I started a playgroup - Social skills
AutismPlays

busy busy busy busy
That's how I work best

kinda broke my heart ...

It was Al's birthday and "helper Mom" day at school

School is where I see our biggest challenges

 Al

Didn't want to sit for circle time

Wouldn't sing "take me out to the ballgame"
Sat in his "spot" apart from his class and looked at books

Didn't want to participate in table work or craft

Al sat in the corner for all of this and played alone
with a Mister Potato Head

It broke my heart when he didn't want his school friends
to sing him happy birthday

It sucked - but only for me 
Al was fine


  

I've started reading

I want to remember this ... and share.

Jim Sinclair, a man with ASD who spoke at the 1993 Intenational Conference on Autism: "Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence... It is not possible to separate the person from the autism. Therefore, when parents say, "I wish my child did not have autism," what they're really saying is "I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead"... This is what we hear when you mourn our existence. This is what we hear when you pray for a cure." As a mother of a child with autism, I completely understand the feeling of wanting a "normal" child, and for the autism to "go away." But I understand now that the autism is what makes my wonderful boy who he is, and makes him so special.

decisions - decisions - decisions

I've never been in this position before

making a decision for one child based on the needs of another

Wait - I am lying - I have

I have asked My to give Al her lollipop
Al had dropped his on the ground

I knew she could recover from a lost candy - he could NOT

With the promise of two pieces of candy when we got home

My would happily give her lollipop up to her brother

Thank God I have a compassionate loving
 first born daughter

Only 21months apart

Al & My 

are very close

makes a Mom smile from ear to ear

This decision feels major today

I am sure I will look back in 15 years and think

Why did I agonize over this for months and months

I wouldn't stop second guessing myself

When a friend told me something amazing

When you have more than one child
one will always need you more than the other
You have to give to the one who needs it
There will come a time when the other
will need you more
and their time will come
and you will be there

I know that My will be successful and thrive
wherever I place her in the garden
Al is going to need something special grow
better light different soil
Keeping them together is more important
for our family

to be honest ...

to be honest with you

this whole process began 3 years ago

it started with my daughter's preschool

i had asked a teacher with over twenty years of experience

what she thought about my son - then almost two years old

these concerns continue to my pediatrician

then onto an early intervention service

which found only a very "mild" language delay

i worked my ass off to "catch him up"

dismissed at 3 years old - professional opinions stated - "on track with his peers"

brought more concerns to my doctor

compared and compared and compared him to other children

every child looking for a common thread

i finally had enough last summer - right after his fourth birthday

when i was handed back my money and told my child could not participate

cried

and this is where that story ends and how we began down a new path ...

today

Today someone amazing told me ...

Al is going to be alright.

He will have a job
get married
have kids
a dog

I cried.

Uncertainly for your child's future is a very scary thing.

officially official

The news is out

it's officially official

Autism

Now, I am in the horrible position of defending a diagnosis I didn't even want in the first place.  Starting with the fact that Al is "high functioning".  We work with him every single day.  I am his therapy - fine motor development - speech and language - everyday to keep him from being miles behind his peers.  We've been just able to keep his head above water the last three years.  I deserve some help - advice - trained professionals - I want him to succeed and not just tread water his whole life.

I also don't want to explain how my son is autistic or what qualifies him as autistic. I don't want to tell you that Al can spin endlessly or he can't find the words multiple times a day or loves to crash over and over and over again.  I don't want to tell you he only uses lines from movies so he can contribute something to a conversation.  Because, your first reaction is to compare him to another child that you know that is "neuro-typical" and tell me this is normal behavior.  To reassure - to soothe -- to tell me everything is going to be alright.  I can really only begin to tell you the things that Al does differently than other children -- these are only pieces.  I now know first hand why Autism chooses the puzzle piece motto.

Al has now been seen by at least nine different specialty doctors and has had over 15 different IQ style test performed - we have answered piles upon piles of paperwork and questionnaires about our son.  I feel like I almost tried to disproved this diagnosis the last month -- trust me, I hated this label beyond words -- but my heart keeps leading me here.

Welcome to Holland

Tonight was my first autism support group

 

It was very tough

I wanted to walk out as soon as I walked in

 

Then she handed me this  - and I stayed.

    

 Welcome to Holland

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum. The Michelangelo David.  The gondolas in Venice. You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland"?!?  you say.  "What do you mean Holland??  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going Italy."

But there's been a change in the flight plans.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language. And you will meet a whole new group of people you would have never have met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around ... and you begin to notice that Holland has windmills .. and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy and coming and going from Italy ... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was suppose to go.  That's what I had planned."

And the pain of that will never, ever, ever, ever, go away ... because the loss of that dream is a very, very, very significant loss.

But ... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 

tomorrow

 Tomorrow is the Day

of the

Official Diagnostic Test

Mixed Emotions

Would LOVE for them to say that they see absolutely no signs of Autism.  Then in the same choke-filled breath I want the official diagnosis - bring it on - I am ready for Autism.

 

Ready to know what makes my son different from his peers - ready to start the services and therapies - ready to be his biggest advocate - ready for the highs and the lows.

My son will thrive and amaze everyone who knows him. 

Then again - I am scared shitless.

Scared for his future. Scared that other kids will laugh at him.  Scared that he won't be able to find the words he is searching for.  Scared that he won't make a "real" friend. 

Scared Scared Scared

So scared that people will only see his Autism and they won't see my Al.

This sucks.

 

rules

I always follow all the f'ing rules. 

No drinking or smoking - absolutely NOT.  I would NEVER take even a sip of wine while pregnant - not when I am breastfeeding - nothing for years and years.  I didn't eat sushi or lunch meat or hot dogs or fish from Lake Michigan. I took my prenatal vitamins everyday. I went to all of my appointments and ultrasounds. I didn't take hot baths or hot tub or even super hot showers. Not even one Tylenol or sudafed or any pain drugs while given birth - I did every single thing the doctors and the books told me to do.

Why do I feel this overwhelming sense of guilt - As the mother - I should have protected him or done something differently.

I know in my head that Autism isn't about what I did or didn't do.

I need my head to tell my heart.

Autism

Al
 has always marched to beat of his own drum
Hell, he doesn't need a drum or beat to march
he has Autism
(The beat is already playing in his head)

The weight of this diagnosis
sits on my chest
like an elephant

I can't look back on our journey
the fact is we are here
and Autism is now

The uncertainty I feel for his future
scare me to death
and at the same moment
challenges me to be
simply amazing 

I have no plans of "fixing" my son
he is and will never be broken
to me or anyone who knows
how truly remarkable he is

Right Now
I am allowing myself to feel this

It sucks
Tomorrow might be better
or it could be worse
Today
Al was trying to tell me something
he bangs his forehead with his palm
 "Mom I just can't get it out of here - it's stuck"
Al
I promise you
It's alright budddy
Mommy will help get it out