I watched Samuel walk from the car toward school this
morning. I still carry incredulity in my front pocket when I realize this is
the very last month of my career as an elementary school mother. I’ve been
doing this elementary school mommying gig since 1990 so it is more than a wee bit shocking to realize,
especially with my beloved son being my final elementary school student.
I often equate his schooling with pain and sadness and
fighting and exhaustion and wondering “Will this ever get better?” The girls
were a breeze. I never thought about it with them much. Now, with Samuel, I am
nearly always on red alert for the school to call to tell me something
happened: something bad, either to Samuel or because of Samuel.
Then I watch him on a hiking expedition with friends and see
him energetically lead the way. I see how he gives all that leadership fun up
in order to “help me” across the creek. I watch him create videos and laugh and
write comedic scripts and I realize there is so much more to him than he
usually shows. I watch his concentration and joy as he rides his bicycle.
Tomorrow I will be visiting the junior high he will be
attending. I told him this morning I would be going there. “Why?” he asked.
“I need to check it out before you go and make sure it is a
decent place!”
He seemed satisfied.
I hope I am satisfied.
People tell me they can’t tell he has autism. This is one of
the challenges of not being neurotypical. If you are high functioning enough,
you just seem like every other child until you are watched more carefully.
Today is Samuel’s birthday. He is twelve years old. He has
taught me so much about both deep, profound pleasure and deep, profound pain. I
need to remember the pleasure more as well as make more opportunities to
experience pleasure with him.
Swinging is very therapeutic for children on the spectrum. Here is Samuel in 2009
We're going on six years of adventuring on our autism journey.
Sometimes it feels like it has been forever. Other times it feels like it has barely started.
Today, in honor of World Autism Day, I decided to compile 10 blog posts I have written in the past about that wild and wondrous adventure.
The first through eighth post are about the recent past.
The ninth and tenth posts are about the long ago past, when I was still waiting for the official diagnosis and suffering through the first semester of Samuel's first grade year.
Today's prompt from the folks at Scintilla13 goes like this:
What talent do you have that your usual blog readers don't know
about? Talk about a time when you showed it to its best advantage.
I don't know how closely I followed the prompt, but believe it or not, the thoughts have been running in the background all day. My writing to it is sort of like burping up thoughts and trying to make those burps into a song. Please excuse the technical difficulties and enjoy the message.
I attribute this talent to my brother John. His verbal
language skills were never all that great, but he and I connected deeper than
language. Our communication was fully embodied and seemed, to some, ethereal.
It was a spiritual practice, now that I look back on it.
John taught me how to listen with my eyes as well as to
catch that listening in the tiniest shift, sometimes in the movement of air or
energy rather than anything other people might see or hear. Some people call
this empathic but that doesn’t quite describe it.
It is sort of like “intuition unplugged”.
Sometimes when I work with life coaching clients I will ask
them, “What’s going on with your shoulder today?” and from three thousand miles
away they will report an injury or just a tightness within their muscles. This
is more of the empathy way, but I also think of intuition as primarily from the
gut.
I’m getting tangled up in words which is ironic because what
I am attempting to explain has nothing to do with conventional language.
I remember when John was in the process of dying. Five of
the six siblings were together: the largest assembly at his hospital. We wanted
to talk with the doctors about John’s treatment when he had been six for a few
months. We were all chattering in the doorway to his room or rather others were
chattering. John couldn’t speak because of his tracheotomy. I was listening
with my eyes.
No one else heard his obvious to me plea, “I can’t see the
tv because someone pulled the curtain in front of it. Would someone please move
the screen so I can see the tv?”
I did. I also apologized verbally to John for not noticing
it more quickly.
He rested his head against the pillow. That day confused him
and it was the only time during his illness my Mom saw him cry. We were all
there, but we were hovering about and we all left, including Mom, for this
meeting. The only person left out was John.
The first time I noticed it was in college, when a group of
young women were in my dorm room. There was one quiet girl named Monica who was
sitting on one of the couches. This particular group of college women were very
talkative, myself included. My eyes heard Monica had something she wanted to
say. I said to her, “Are you feeling well, Monica? Do you need something?”
With that, Monica started to tear up.
She had been longing to be heard. My eyes heard her, first.
In another crowded room with all sorts of chatter, I heard the one who needed
to be heard with my eyes first.
I realize now not everyone can do this.
It is a continuing spiritual practice, one I need to remember. I practice with people, with trees, with birds. I slow down and bend my body - be it my ears, my mind, my eyes - and listen.
Are you listening, too?
Kris and Jimmy, where are you now? I'm sitting in an almond orchard in Bakersfield, California.
This post was inspired by the folks at Scintilla13 - Here's what they have to tell us:
Moms with special needs kids will recognize themselves in my
words here today.
I can’t even tell you how often this happens to me: the car behind me honks to startle me awake
from solving all the world’s problems or writing my shopping list or
deciphering last night’s dream. Sometimes I am thinking about how to help my
children lead their best lives. Oftentimes I am specifically thinking about Samuel's education. The next round of assessments, the IEP or whatever barrier I think may be right around the corner.
We are bombarded with advice, good intentions, and “professional-know-how”
but when it comes down to it, we teach our children from our gut more than our
intellect and we hope and pray much of the time that somehow something is
getting through.
Sometimes those prayers turn into an obsession.
Samuel has high functioning autism and is in a sixth grade general education classroom which
sometimes goes well and sometimes, like anything else in life, falls short. I made it a
point to introduce myself to the teachers earlier in the year, neither of whom
had experience to teaching children with autism.
I reminded them I never expect anyone to be an expert in my
child along with a request for us to work together in helping him become
successful.
This week Samuel’s language arts teacher sent me an email
over the weekend so I could start prepping Samuel and then working with him
throughout the week. Their writing assignment was to write a story about waking
up one day as a CAT rather than a PERSON.
At first Samuel didn’t want to do this until we started
talking about characters and how different characters impact the “what happens”
in the story.
This seemed to become a theme for me this week: it started with how to best help my son with autism in school more and turned into a different way to approach the world.
Last night on the way home from an event at the Art and
Spirituality Center we created from a whole new-to-me version of Hansel
and Gretl. This lead to me wondering how Emily Dickinson might write a poem about a particular
intersection here in Bakersfield.
I sat in my car, looking at a street light. I thought, “How
would Emily Dickinson see this seedy neighborhood with this high powered street
lamp?”
I was having so much fun I almost didn’t see the traffic
light turn green.
Are you ready to experience the darkness on a Bakersfield
street corner with Emily Dickinson and me?
Street Light, Corner of 21st and Union
Electric orb
Sharing luminousness with the
Members of the pearly ancient profession
And the shaking, tittering loose toothed
Hungry for the next, next, next….
As well as the cars who have lost
Their way and landed
Underneath you
Without question
Your work is done
# # #
Think about one of your favorite characters: fictional,
historical, literary, and consider what might happen how they might experience
your life through you.
To go deeper and more personal with your family, what might it be like to experience your life as your child?
Have you ever considered that in a creative, playful way?
Perhaps writing as your child will help you understand him or her better.
Just beware of when the light turns green. The car behind
you might honk to startle you awake from your creative parenting play.
In this 31 Days I will write of mothering my tween son, my teen daughter and my on-the-verge of twenty-one daughter. So much Mommying seems to focus on the PreSchool years. I want to share some other sides of Mommying and this 31 Days gives me the perfect opportunity.
It was still dark this morning when I woke up at close to
six o’clock.
I had given Samuel, my son, his usual five minute warning to
get out of bed, but I knew he had been up late so instead of being a command sergeant
playing reveille on her shiny trumpet, I climbed into his bed for a little
morning snuggle.
I won’t be able to do this for much longer. If he didn’t
have autism, I wouldn’t feel the ability to do such a normal-motherly thing. At
eleven, he is much like an eight-year-old emotionally. He got tears in his eyes
when I left the house Saturday to go to a five hour workshop. “I want to be
with you, Mommy, I want to be with you,” he said.
It was quiet moments like those as I watched him sleep this
morning. He usually isn’t one for closeness. When he goes to sleep he wraps
himself in a sheet or blanket cocoon. When I climbed into his full sized bed,
he unwrapped his sheet, let me slide in and went back into that lovely stage of
half-awake, half-asleep early morning brings.
He put his calf against my knee.
This is enormous affection from this little boy on the
spectrum. I stared at his long eye-lashes, his few sweet, still little boy like
freckles and his face, so like my father, his grandfather.
It was such a serene moment.
Last night I almost tweeted something like this: “It is one
of those rare nights where it feels like autism is winning. I am so aggravated!”
This morning, I said quietly, “Samuel, it’s time to get up.”
And he responded, equally calm and quietly “Ok.”
He stretched his ever getting longer legs before climbing
from the bed and the day began.
Moments like these are what keep me going when he is ornery
and angry and refuses to eat his French fries because I forgot to put the
chicken nuggets in at the right time. Even though he eats the fries first
anyway, his rule and ritual says he must have chicken and fries in front of him
before a single bite is taken or a single drop is sipped.
It would drive some people crazy.
It drives me deeper in love.
It was still dark this morning when I woke up at close to
six o’clock.
I had given Samuel, my son, his usual five minute warning to
get out of bed, but I knew he had been up late so instead of being a command sergeant
playing reveille on her shiny trumpet, I climbed into his bed for a little
morning snuggle.
I won’t be able to do this for much longer. If he didn’t
have autism, I wouldn’t feel the ability to do such a normal-motherly thing. At
eleven, he is much like an eight-year-old emotionally. He got tears in his eyes
when I left the house Saturday to go to a five hour workshop. “I want to be
with you, Mommy, I want to be with you,” he said.
It was quiet moments like those as I watched him sleep this
morning. He usually isn’t one for closeness. When he goes to sleep he wraps
himself in a sheet or blanket cocoon. When I climbed into his full sized bed,
he unwrapped his sheet, let me slide in and went back into that lovely stage of
half-awake, half-asleep early morning brings.
He put his calf against my knee.
This is enormous affection from this little boy on the
spectrum. I stared at his long eye-lashes, his few sweet, still little boy like
freckles and his face, so like my father, his grandfather.
It was such a serene moment.
Last night I almost tweeted something like this: “It is one
of those rare nights where it feels like autism is winning. I am so aggravated!”
This morning, I said quietly, “Samuel, it’s time to get up.”
And he responded, equally calm and quietly “Ok.”
He stretched his ever getting longer legs before climbing
from the bed and the day began.
Moments like these are what keep me going when he is ornery
and angry and refuses
eat his French fries because I forgot to put the
chicken nuggets in at the right time. Even though he eats the fries first
anyway, his rule and ritual says he must have chicken and fries in front of him
before a single bite is taken or a single drop is sipped.
Julie Jordan Scott has been a Life & Creativity
Coach, Writer, Facilitator and Teleclass Leader since
1999. She is also an award winning Actor, Director,
Artist and Mother Extraordinaire. She was twice the
StoryTelling Slam champion in Bakersfield.
Did
you enjoy this essay? Receive emails directly to your
inbox for Free from Julie Jordan Scott via the Daily Passion
Activator. One inspirational essay and poem (almost)
every week day. Subscribe here now -
It is time for the Five Minute Friday Flash Mob of writers. I need to tell you, I missed the Thursday party two weeks in a row due to my surgery for Melanoma. I found out yesterday my pathology report came back clear, so I was celebrating when some of the party people were typing up their five minutes on GRASP. Let me tell you, ladies... I am praying I remember and show up next Thursday because the party time is ridiculously fun.
Now: my words on Grasp…
Morning after morning, I go over Samuel’s homework with him,
attempting to help him the best I can to get it done, all the while wishing I
didn’t feel like it is such a chore.
He goes to an afternoon social skills program and doesn’t
get home until 5:30 or 5:45 pm and by the time our dinner is finished, it feels
like he has no time to just unwind and be a kid. I attempted to share my
distaste for excess homework at his IEP last year, but it didn’t work.
What worked was forging relationships with his teachers and
getting their help in sending home assignments and we kept in touch with each
other about all things Samuel.
This year, now that Samuel is in the General Education Sixth
Grade Class – he has high functioning autism – the subjects are getting more
difficult. I grasp at some of the facts and google has become an extra good
friend. I forget so much of the World History I haven’t studied since my
freshman year of high school.
I am more than slightly shocked that I know my way around
simple algebra. That happily surprises me. What else surprises me about the
math is I actually find myself enjoying it.
Another surprise: I am a writer, but I didn’t know the
different types of sentences we had to identify for his homework today. I
grasped at what was what….I knew exclamatory. I knew interrogative – mostly because
Samuel’s Dad is a lawyer. There was one, though – making a request – and I have
forgotten it even after doing the homework just an hour ago with Samuel. I know
Declarative.
I laughed with Samuel and told him how my entire eighth
grade year was spent diagramming sentences. For some reason, I liked it then
and I like it now.
I realize as I wind up here on Five Minute Friday today,
that I actually enjoy grasping for facts and gathering up what the answers are
rather than just doing the easy stuff.
Grasping isn’t a bad thing, it is a part of the
process. My fifteen-year-old wise
daughter
said something very wise as I cried earlier this week about not being
able to make her fancy lunches as I am in recovery for melanoma – skin cancer.
She said, “Mom, it is fine that you can’t make me fancy
lunches. Most kids only get sandwiches. Most kids make them themselves. I will
be fine: this is all part of a process. In sixth months, you will be much
better.”
Somehow, I taught her without knowing it that grasping is
not something to turn from, it is something to explore with an open heart and
attitude.
(I went a few moments over - so sorry!!)
If you are interested in joining the writing flash mob at FiveMinuteFridays, visit here.
A quick look at the guidelines from the gypsy mama - Lisa Jo Baker who is also our ringleader!
1. Write for 5 minutes flat – no editing, no over thinking, no backtracking.
2. Link back here and invite others to join in.
3. And then absolutely, no ifs, ands or buts about it, you
need to visit the person who linked up before you & encourage them
in their comments. Seriously. That is, like, the rule. And the fun. And
the heart of this community..
Oh and Ahem, if you would take pity and turn off comment verification, it would make leaving some love on your post that much easier for folks!
OK, are you ready? Please give us your best five minutes on:
Julie Jordan Scott has been a Life & Creativity
Coach, Writer, Facilitator and Teleclass Leader since
1999. She is also an award winning Actor, Director,
Artist and Mother Extraordinaire. She was twice the
StoryTelling Slam champion in Bakersfield.
Did
you enjoy this essay? Receive emails directly to your
inbox for Free from Julie Jordan Scott via the Daily Passion
Activator. One inspirational essay and poem (almost)
every week day. Subscribe here now -
Maybe it is because he is my first male child to be nearing
puberty, but I feel completely adrift when it comes to dealing with my son,
Samuel, who at eleven-years-old has suddenly become super clingy and more
anxious than ever. He has autism, too, so that just makes every new behavior more
noticeable.
I guess that is what I would call it.
I rumble around the internet looking for ideas. Let’s see:
Tai Chi? Not a bad idea. I might be best off to ask if they could do Tai Chi at
his afterschool program. He is smart enough to know he can act one way at his afterschool
program and as soon as Mommy arrives, he lets his guard down and acts like he
can’t manage anything on his own.
It’s “Mommy” and “When are we leaving, Mommy?” as soon as we
get in the car… and on and on and on.
I do some research only to find out seizures are a
one-out-of-four reality for spectrum
kids.
Researcher Christopher Gillberg reports “puberty, more often
than not, tends to increase (worsen?) the presentation of various autistic
symptoms.”
I also learn it is one of those “grin and bear it”
situations.
Believe it or not, my daughters have been almost a breeze
through puberty.
I remember before Samuel was diagnosed, I thought his
behaviors were because he was the youngest and the only boy. I didn’t realize
he had autism.
Now I know he has autism, have been working for the past few
years as his fiercest activist and advocate yet the thought of enduring several
years like these past couple months have been? I feel like I am too old for
this!
He won’t even let me follow him around with a camera anymore
unless he has a brilliant pose to show me.
Thank goodness my love for him is absolutely unconditional
and full of profound love beyond measure.
And if you happen to have negotiated successfully through
puberty with your son with autism, any advice would be tremendous.
I love him so much - I can handle the ornery behavior but it would be so much more pleasant if I knew more successful ways to deal with him!
Julie Jordan Scott has been a Life & Creativity
Coach, Writer, Facilitator and Teleclass Leader since
1999. She is also an award winning Actor, Director,
Artist and Mother Extraordinaire. She was twice the
StoryTelling Slam champion in Bakersfield.
Did
you enjoy this essay? Receive emails directly to your
inbox for Free from Julie Jordan Scott via the Daily Passion
Activator. One inspirational essay and poem (almost)
every week day. Subscribe here now -
Today's topic from #BlogFlash2012 - which I am joining almost half-way through the month - is CHILDREN. My most common computer password expresses, everytime I log into a website or what have you, how much I adore my children. My first internet handle was "luvmibabies" - yes, I am a mother hooked on her children.
I have heard rumors that most Mothers & Daughters go through a horrible season or two between ages 9 and 18 before they can actually look each other in the eye again.
I must have done something wrong in the parenting department. My daughters and I have never gone through that “Who is this female under my roof who looks somewhat like me but is so annoying I can’t stand to be in the same room as her!”
My formula for parenting success, though, isn’t an easy one either.
My belief is we were bound together by the not-so-great times so we cherish each other that much more in all the other times. We thrive on vulnerability, transparency and love. We have each others backs. We see the best in each other. We appreciate each other’s idiosyncrasies.
Last night my children and I had a slumber party in my living room. My daughters, my eleven-year-old son and I all chose a different spot and we laughed our way to sleep.
Julie Jordan Scott has been a Life & Creativity Coach, Writer, Facilitator and Teleclass Leader since 1999. She is also an award winning Actor, Director, Artist and Mother Extraordinaire. She was twice the StoryTelling Slam champion in Bakersfield. She leads Writing Camp with JJS & this Summer will be traveling throughout the US to bring this unique, fun filled creative experience to the people wherever she finds the passion & the interest.
Did you enjoyed this essay? Receive emails directly to your inbox for Free from Julie Jordan Scott via the Daily Passion Activator. One inspirational essay and poem (almost) every week day. Subscribe here now -
This turned into a bit of a rant. I apologize ahead of time, but you should be able to tell I am passionate about education AND I am passionate about ALL children.
You might say I am an expert in educational options for my children.
I have done it all: private school, public school, special education in public school, mainstreaming a special needs child in public school and yes, I have homeschooled all three children at some point or another.
There are pros and cons in all of these options.
I would not want to home school my children all the way through simply because I am a much happier Mama when I am not with my children 24/7. There, I admitted it. My children continue to be self taught at home, anyway, and I take them on all sorts of educational outings, it just isn’t “official”. Samuel learns so much by being curious and researching it is incredible.
Katherine, my eldest, went to private Christian school for kindergarten through second grade. I wouldn’t have elected to change this but our income went down, drastically, and I couldn’t afford it. We live in a school district that is very poor – even though we live in a nice neighborhood – and I swore I didn’t want my children in that district.
Now I work on several high profile committees in that same district I thought shouldn’t include my children.
My EuroAmerican children have been the minority for most of their schooling and I am glad it is that way. They appreciate diversity and value people of every ethnicity, culture and belief. They know discrimination because they have felt it, being in the minority.
All three children spent time at a particular Performing Arts Magnet School during elementary school. I was thrilled with Katherine there, slightly less thrilled for Emma and when Samuel was in kindergarten they broke education code… because they had administrators who were clueless and somehow have kindergarten teachers who don’t recognize the symptoms of autism.
I ended up withdrawing Samuel for a semester and homeschooling him until we got the IEP process complete for him and got him the Free, Appropriate, Public Education he was supposed to receive all this time and didn’t.
He was in a fulltime special ed placement for the first semester and then we started mainstreaming which has mostly been successful. He starts sixth grade in a week and it frightens me. Hormones and testiness… with special needs added, I am not sure how this will go.
He also attends an after school social program which has been excellent for him. I just wish hope pray he can generalize those social skills in “the outside of autism world.”
East Bakersfield was the high school for both girls. Emma is going to be a sophomore. Katherine is a Junior at prestigious (back to private) Smith College in Northampton, Massachusetts, after graduating fifth in her class. She is spending the Fall semester at University of Edinborough so we are adding international education to the mix.
If you were wondering, the boy who graduated second in his class spoke no English when he started kindergarten. I find that fascinating and inspiring.
Emma is doing very well at this (what my girls call “ghetto”) school. She is in the most advanced choir, drama and journalism. She is well liked and her social slip ups in middle school which lead me to home school her during middle school have faded.
At the start of last year she cried every day after school.
This year she couldn’t WAIT to get back to school for her choir camp. She is well loved by many.
With all this said, I would advise parents of all things: before you judge a particular mode of education, check it out thoroughly.
Don’t be dismissive “just because.”
If you choose public or private school, be a known entity on campus. Instead of immediately getting angry at the teacher or administrators, treat them with respect. This was tough for me because… not to brag… but I am an intelligent, well read Mommy. I am not a passive, “Oh, I don’t know anything” parent who can get pushed around.
On that note – don’t allow them to push you or your child around! NEVER EVER!
No child is a cog in a wheel. Each child is unique and is entitled by law to have a free, appropriate public education. If you elect to home school, look into online options which offer some instruction beyond what you are able to give yourself. That way you get at least time to drink coffee by yourself in the morning! Join home school support groups and involve your child (and yourself!) in the extracurricular activities.
Emma especially loved these opportunities.
Katherine, who I also homeschooled during Junior High, didn’t need them as much. Look at each of your children as unique individuals, too – because they ARE each unique individuals with unique strengths, weaknesses and needs.
I am passionate about education and educational needs of all children, unique and precious whether they are tiny little children or adult children. Can you tell?
Julie Jordan Scott has been a Life & Creativity Coach, Writer, Facilitator and Teleclass Leader since 1999. She is also an award winning Actor, Director, Artist and Mother Extraordinaire. She was twice the StoryTelling Slam champion in Bakersfield. She leads Writing Camp with JJS & this Summer will be traveling throughout the US to bring this unique, fun filled creative experience to the people wherever she finds the passion & the interest.
Did you enjoyed this essay? Receive emails directly to your inbox for Free from Julie Jordan Scott via the Daily Passion Activator. One inspirational essay and poem (almost) every week day. Subscribe here now -
For some reason, I am suddenly nervous about Kat going to Edinburgh. 2 years ago I was nervous about her going to Smith College. I am in California, after all. Smith is 3,000 miles away. Edinburgh is roughly 6,000 miles away – I am afraid to look it up, actually – so I worry my worry will be doubly bad.
Just last week I told Katherine I was worried about something random. She wisely said, “Oh, Mommy, it’s just your nature to worry.” Here I thought my nature was to appear all calm, cool and collected. Who am I fooling?
There was the day I cried after my first parent teacher conference for Katherine (then Kathie) when she was in preschool and then there was my sadness when she was stopped wearing diapers. I am the only person I know who cried when her child was potty trained.
I must recall as well my happiness that she was born at the end of December so I could “have her for another year” because of cut-offs for starting kindergarten.
Letting go of my children is not my forte.
I seriously don’t know how my mother did it.
Maybe it was because she got so much practice with four kids moving up and out in seven years. I imagine at that point it is relief because you don’t have to cook quite as much dinner.
I am thrilled Katherine has grabbed onto every opportunity that has come her way.
She will be even more poised and graceful after she negotiates life in the UK. I just looked at photos of the flats there at Edinburgh and my heart started pounding. What if it is hard for her to make friends? What if she just shuts herself into her little bedroom and never socializes in the “kitchen/living” area of her 12 person “flat”?
What if she doesn't come back after her semester and her brother, Samuel, who loves her so much, thinks she has deserted him? I went through that with John, after all. Our sibling relation didn't heal for years!
What if? What if? What if?
What if she has a fabulous time?
What if she meets and falls in love with a Scottish man with thick curly brown hair and green eyes?
What if my grandchildren have Scottish Accents?
I think I just need to calm down.
I survived the withdrawal from diapers, I can survive this.
Julie Jordan Scott has been a Life & Creativity Coach, Writer, Facilitator and Teleclass Leader since 1999. She is also an award winning Actor, Director, Artist and Mother Extraordinaire. She was twice the StoryTelling Slam champion in Bakersfield. She facilitates Virtual Writing Camp , too.
Did you enjoyed this essay? Receive emails directly to your inbox for Free from Julie Jordan Scott via the Daily Passion Activator. One inspirational essay and poem (almost) every week day. Subscribe here now -
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