is the anniversary of the day Sam was diagnosed with High Functioning Autism.
I sent this email off to my family and a number of my friends and thought I would share it here, as well. The entries are all copied and pasted from here on 43things.com which reinforces for me again what an important resource this place has been to me and my family.
I just discovered today is a landmark day – it is the anniversary
of the day when I got Sam’s official Asperger’s/High Functioning
Autism diagnosis. I have often said I don’t care what label they
slap on it (being a rather un-label-loving person myself), I
just need Sam to be served educationally and socially.
I was reading through some of my writing from the past year
and I have been crying as I read and then I got angry at myself
for not sharing more of this experience with each of you. Instead
I sat here in Bakersfield, living my personal hell from a pretty
alone place. It is a shame I do that, but I have and I would
like to stop doing that.
I thought I would send several of my entries from my writing
about Sam throughout the past year so you can know more
of what Sam’s day-to-dayness is like.
Mom told me Jeff asked about him recently and that sort of
opened my eyes to the fact I don’t communicate with
y’all enough and you might be interested.
This is going to be lengthy – but it HAS been a year’s
worth of processing, after all. I hope you will
take the time to read this and I also understand
if you can’t.
Today I wrote:
I helped Sam with his homework a couple nights ago
and was amazed at his ability to multiply.
He hasn’t been taught multiplication yet,
but he knows it.
They were working with coins and there was a
word problem that read Rachel has seven dimes,
how much money does she have? And Sam
blurted out “Seventy Cents” immediately.
Which means he had to get, “Dime is 10 cents”
and “Seven times ten equals what?” to
“Seventy Cents” in a split second of time.
My jaw dropped.
They had another problem where there was a pattern.
I personally see these number pattern things and go
cross eyed. This one required multiples of three,
that was the pattern.
The missing numbers were in the 80’s and 90’s
and Sam just spit it out: 92, 95, 98… again
without “showing” any thought process,
he just figured it out.
He is mindbogglingly smart, my little boy.
Earlier this week I wrote:
My word today is grace, I prayed it as I combed through
Emma’s tangles, knowing if nothing else the word would
hold me in a comfortable, strong embrace, like I
held Sam this morning.
“It felt so good, holding him.
“Holding him, letting his bones and cells and dirt
splotched skin become closer kin to me… it just
felt so good. Sam’s skin in my skin.”
We have a morning ritual of holding. I know
experts say kids with autism don’t do the
touching thing, but for Sam, the “power touch”
of firm, 100% present holding is something that
always brings him great calm.
He is getting so big, for now he can still fit
under my chin and I can hold his entire self
against my entire self, cradling him. Before
too long, I will need to get creative with
my holds.
There are times when he is about to blow
that I just take him and hold him. It isn’t
restraining, it is presence-holding. It isn’t
punishment, it is “I am listening to you, I
hear you, and I might not be able to solve
your problem with whatever is going on
with you… and I can hold you.”
There was a recent day when we were
leaving VAC and Sam had leapt into my
lap and I had held him a moment and
Emma was there, showering him with
“I love you so much Sam”s and a Dad
was watching us as Sam walked out,
sure of his world being just right.
I said to the Dad, “Must be a tough job
to be loved so much.”
He laughed.
Don’t we all want that? Where our only
job is to be loved so much?
Wow. Brings tears to my eyes.
On March 24 I wrote:
One of these days I will be able to settle into his
dramatic improvements rather than
be afraid all the time.
Last December I wrote:
Sam’s eyes showed sadness today but he
didn’t use words to express it. I first saw
sadness flit across his face after we took
Emma to school.
It came up later, too – when we talked briefly
about going to “Williams Street”… and then,
vaguely, throughout the day, probably when
he went on a thought path that I was
not privy to traveling.
I was reminded of John, when he would get
sad. It was such a mournful sadness, and so
rare… because I never saw it building. It was
just an explosion, finally, of deep, utter sadness
the likes of which I never knew personally
until recently.
I am sure there were flickers of sadness,
flitting across his face, too, but I never noticed it.
With Sam, I see a lot because I consistently
watch for it now.
I was reading about autism this morning again
as I was looking for this whole expression
piece… not reading other’s expression but
“letting it out”…. and didn’t find anything
very fitting, but I did find one link that
brought tears to my eyes… the frequent
presence of chromosomal abnormalities in
the families of children with autism, which
made me think of John, who had both the
chromosomal abnormalities of Down’s Syndrome
and the mark of autism.
I wonder if my children will pass up having
children because of this? That thought makes
me so very sad. And I know I am thinking wayyyy
too far in the distance…but…oh, there is such
a mixture of emotions here.
The tears turned to a sad half laugh as I told God,
“I really have had enough “a-ha’s” for now.
You really can slow down the lessons….
Last November I wrote:
I watched Sam climbing the tree, asking me along
the way, “A” or “B”? “Straight or left or right?” He
always asks which branch to venture upon,
where to turn next.
He sat down in the perfect branch bench and
I flashed on the thought, “that looks rather
dried and crackly” when the
six-feet-in-the-air-bench-and-Sam
all came crashing to the ground.
It was a moist, water-filled, soft soil landing,
but Sam was scared and his belly took a hit
from the branch. “Did my heart break?” he
asked through tears. “Is my heart broken?”
I went to his side, rubbing him a little,
encouraging him.
“The tree needs a time out, Mommy.
Time out the tree, please.”
So I gave the tree a stern talking to
which it took… like a tree.
I waited for Sam to stop crying, just staying
present with him and allowing him to express
himself. “Do you want to go home now?” I l
looked down at my son, shaking still with
tears, carpenter’s jeans wet from the lower
thigh down from where he fell into the lake
after he catapulted himself during a particularly
energetic toss of duck-food into the water.
I thought he looked pretty miserable.
“I want to stay here longer and larger.” He said,
getting up. “I want to climb the tree again.” He
stood by the crooked branches and said, “A” or “B”?
I looked, said a little prayer and chose “A.” He
scrambled up and at one point, when he was
horizontal with the earth, he stood on a branch
as if it was a balance beam. I stood a couple arms
lengths away and held my breath. If he fell, he fell.
I am obviously not a hovering parent.
I was with Katherine, so much so that I often
wonder how she turned out so well.
As I retell this story on the page, Sam is playing
in the back yard. He came in a moment ago after
hearing some church bells sounding their 11:45 song.
“Are those the First Presbyterian Church Bells,
the Bakersfield College Bells or the Greek
Orthodox Church bells?”
I stop typing, look at him and pronounce, “Those
are the Garces Memorial High School Church bells.”
“Ok,” he said and walked back outside.
I relaxed with Samuel and Emma. I let them discover
their way. Sometimes they get hurt. Sometimes tree-limb
branches give way when you don’t expect it. Sometimes
you throw a piece of bread towards a duck with such
passion, the energy knocks you off your feet and
you fall in the lake and get wet.
Its all ok.
We walked around Hart Park, exploring sections
Sam calls “God’s Garden Center”. We talked to a
man named Steve who was birding on his way
to the golf course. I learned in the winter there
may be up to 100 breeds of birds making their
home right in this very park.
We ended up where we always end up, at a
small playground where Sam turns the climbing
structure into a house in his mind with all the
areas carefully selected different rooms and
all three slides with different destinations.
I watched Sam for a bit and then decided to
lie down on one of the benches and stretch out.
I wondered if this is what it felt like to
be a homeless person.
I watched the branches of the pine tree beside
me move and sway in the slight breeze. I enjoyed
this unique under-belly point of view. I peered
around the grove of trees and saw a whole
gaggle of geese resting there in the distance.
I saw a man go into the restroom wearing one
outfit and go out wearing a completely different
ensemble including very, very white ankle socks.
I laughed to hear Sam had taken slide “A” into
the puddle at the bottom. His pants were wet
from his earlier fall, it didn’t hurt anything
to get them wet again.
Today turned out exactly as it was meant to,
complete with Sam falling into the lake and
falling onto a moist, forgiving soil.
I will not hover over my child, I will allow
him to discover and follow his own
fascinations in his own way.
I can hear some people disagree, that
we need to protect our children from
such experiences.
No, I don’t need to protect Sam from
falling from a relatively low branch of
a tree or from tumbling into a foot of
water when I am standing right
beside him.
“But he has autism!”
Yes, he does. And your point is?
He is quirky and so logical and concrete
at times I think I will pull my hair out of
my scalp. Being outdoors, exploring,
allows him the space to roam, to explore,
to learn it is normal to feel both scared
and safe at the same time.
Sounds like a great environment in which to grow.
End of October, 2007:
I am going to try to be succinct and
not get upset.
The language assessment did not go well. After
a half an hour of not being able to engage Sam in
her assessment process, the speech and language
“professional” turned to me and said,
“Julie, this is not a disability, this is a brat.”
Yes. Those were her exact words.
That was….about ninety minutes ago and since
then I have been on the phone with a variety of people.
I am now creating a paper trail, so I wrote a letter
to her supervisor stating what she said,
when, the bare minimum.
OK, I am off to get this printed, head
to the school district for delivery, and
then? I am not sure what.
I am mad, I am sad BUT I am not
tumbling into despair.
From Mid-October, 2007
One of Sam’s incessant questions is, “What is it?”
followed up with second incessant question,
“What does it mean?”
When I am cranky, like I was tonight,
these two simple questions for the 895th
time that day can get downright painful.
Sam was antsy and since it has been a while,
I agreed to take him on a pre-bed ride. We were
driving down Christmas Tree Lane not far from home
and he said, “What is it?” and I had no idea what
“that” he meant.
“Let’s see, a streetlight, an apartment,
a utility pole? I don’t know.”
He asked again, “What is it?”
“Oh, I don’t know, Sam. Wait. I
know. It’s life.”
We were driving down an ordinary street.
We were driving on life. It seemed reasonable.
It was apparently the right answer. Sam
asked his follow up.
“What does it mean?”
“It means you are breathing. Your heart is beating.
You are growing, moving forward… hopefully.”
And then I smiled.
Sam sat silently, apparently satisfied with my response.
From a Year Ago, Today:
Sam and I went to the psychiatrist at
Kaiser today. She finally gave me the
official diagnosis that I knew all along.
Sam has Asperger’s.
Not PDD, not ADHD, not any other label… Asperger’s,
as I first discovered when God and Gooogle got
together and reached out and said, “Look,
Julie… look here!”
I now have a paper to wave around to all
the bureaucratic types. “See?! It is true!”
I am glad and yet, I am sad.
The most refreshing thing was hearing the
psychiatrist being so compassionate and
knowing the BS I went through, precisely,
with the school last year and their
bungling of Sam’s education and behavior.
She got it. She heard me. She cares.
I know they are all supposed to care,
but sometimes it doesn’t seem like it.
Sam admitted he was in the first grade today.
Progress.
I’m not crying anymore.
