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.
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.
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
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Activator. One inspirational essay and poem (almost)
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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 -
Where a flash mob of folks spend five minutes all writing on the same topic and then share ‘em at LisaJoBaker.com.
Words from my five minutes -
Samuel and I communicate in a beyond language place not unlike my brother, John, and I used to do.
People from the outside can’t climb inside our beyond language place, but for me it is a sacred experience between mother and son, fed by days and weeks and months of ritual and built on a foundation of safety and “I understand you” is the water we swim in. “I understand you and I love you.” is perhaps a tiny bit more accurate.
Samuel lives on the autistic spectrum. He has high functioning autism, so to most people he appears absolutely normal until something, unseen by most of the world, happens to interfere in his world and he blows up, to them, unexpectedly.
This happened last night at a party. I didn’t communicate clearly with him so when I said it was time to go, he wasn’t ready. He started crying, hard, and yelling at me.
He is eleven-years-old so this is pretty abnormal behavior for a boy his age.
He didn’t know many of the people there very well.
I felt awful about it, for him primarily.
When Emma saw him start to go, she retreated into the house. She gets scared when these episodes happen and she also gets more embarrassed than I.
I remember what it was like to be a special needs sibling, after all, my brother John had Down’s Syndrome. Before he died, we would communicate silently as well. I would “hear” him, though, clear as a bell. He would tell me things with his eyes. I would respond. No one else would be able to hear our conversations, our beyond words spaces and places we walked within.
I could easily be resentful or angry to have these relationships with these two guys in my life, but I am not. I am blessed. John prepared me to mother Samuel. Samuel prepared me to be an educational advocate, to communicate better with bureaucrats than I ever wanted to in the past.
Beyond language, beyond appearances, beyond our own understanding, we are blessed.
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..
OK, are you ready? Please give me 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. 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 -
“ Intelligent discontent is the mainspring of civilization. ”
— Eugene V. Debs
I was discouraged yesterday and believe it or not, I made that discouragement mean I was wrong. My not very productive thought was “If I was doing the right thing with my life, I wouldn’t feel discouraged. I wouldn’t feel discouraged.”
What I did next was important, though. I got up and moved away from my stuck place behind the keyboard.
I went about doing chores, taking care of my children, doing my afternoon Mom-Schlep and I allowed my mind to wander.
My mind wandered to my soul collage card from yesterday to Women and Leadership.
I had recently decided to leap into the discovery of current women in politics, especially those beyond the United States. I was an international relations major but somehow I had gotten way out of touch with the political world, especially on an international level.
One conversation knocked on my heart and helped me break through the inertia.
Last weekend I created a soul collage card that to me called me to personal leadership as well as the study of women leaders. I quickly discovered Angela Merkel, chancellor of Germany.
I confess, I had never even heard of Angela Merkel until yesterday. Now, I am deep into a study of Merkel and other top women leaders. The Forbes list for 2011 includes two powerful wives, a handful of politicians and a smattering of business women.
This made me feel very uncomfortable. It made me feel squirmy in my seat and more than a little bit disappointed in myself. Instead of getting stuck deeper in the quicksand of “my shortcomings” instead I accepted that for the past and now, I have turned the corner into spending more time learning about women leaders so that I may also become a better leader in the work I do.
I may not be the secretary of state, I may not be the head of a multinational corporation worth billions, but I do serve on several educational committees and I run successful Writing Camp programs and am in the midst of raising three phenomenal human beings.
My discontent of today, my squirmy ickiness isn’t holding me back any more, my vision of being a better leader is pulling me forward.
What will you do, today, to become a more engaged, educated leader?
This may be as simple as a shift in thinking or a quick google search on a woman who intrigues you. Allow your vision of yourself as a better leader pull you forward. The discontent is the nudge and the vision is what gives you wings.
This is post #18/31 for the Ultimate Blog Challenge. Slowly and surely I am getting caught up!
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 -
Today’s Summer Blog Challenge prompt is a difficult one to write to as well as read. My prayer is people read and respect other’s views, especially those that are completely different than yours AND those you don’t understand the reasoning. We may learn something from those opposing views, especially if we come together in conversation with minds that are willing to listen rather than shut themselves off.
The prompt:
July 19- If you were president or prime minister for a day, what's one law you would change? -Submitted by Hannah @ Baby Knows Best
I know some of you may be surprised by what I write about what laws I would change. Before you close your window and declare yourself unwilling to speak to me again, please read my why’s behind the what’s.
Here are a smattering of laws I would change:
Equality across the board – I knew of my first gay marriage back in 1990. I didn’t question the legality of it, I just thought it was great my friend Steve was getting married. It wasn’t until it was legalized (briefly) in California that I discovered, “You mean this isn’t legal?” My current research is to collect all the Biblical references regarding what Jesus actually SAID about this issue since I have a meeting with a fellow Christian about this topic next week. My children and I protested here in California and carried signs that said, "Christians Against H8." I had the best theological discussions that day.... and I was afraid my church friends might see me and tsk tsk. I also believe in equality in education – meaning all school districts should strive for excellence and serve their underserved populations like Special Ed students through mainstreaming as many kids as is appropriate and not just warehousing the “inconvenient” kids. And wouldn’t it be great if there really was a community where interracial friendships were the norm instead of the exception? How about straight people and the LGBTQ community hanging out together without women being called Fag Hags or straight women hanging out with lesbians being presumed lesbians. How would I create such a law? No idea, but I think if we created an environment of love and compassion, these outcomes would be like breathing. Maybe for our kid’s generation.
Get ready to spit out your coffee. I believe in legalized prostitution because I would prefer the women who are engaging in that profession be protected AS WELL AS the men who are purchasing their services. Imagine if we could be sure there aren’t all those diseases rolling around and imagine if we could get horrifyingly violent pimps off the street. Imagine if all the prostitutes were actually there by choice because they realized it was a way to make a decent living, support their families or whatever it is they are doing? Imagine if you couldn’t be drugged up to be a prostitute and you couldn’t have untreated STD’s to be a prostitute. Imagine if we could collect sales tax on prostitution to keep our infrastructure intact. (Some of our roads here in California are AWFUL!) Read here about how forward thinking parts of the US were in the 19th Century AND how women's rights were won first by Prostitutes and the WOMEN who employed them. I didn't write this, a scholar did....
Legalize and Monitor certain (now) illegal drugs. I say this as I am the biggest Carrie Nation style drug Prohibitionist you will ever meet. I have friends who, again here in California, have their Medical Marijuana cards, which is a joke. I hate it! People say “Oh, my fingers hurt from typing, I need a medical card” and they get one! And then they get HIGH and then they may lose their jobs because of the marijuana that stays in their system for a long, long, time! I know, look at all my exclamation points. I just found out last night there is a part of the marijuana plant that may be ingested (not smoked!) which actually HELPS with brain function. My thought with legalizing certain drugs is #1) Take away the power from the Drug Cartels #2) Empty our jails of bodies just wasting away and becoming bigger criminals from the culture on the inside #3) Again, build our infrastructure with tax revenues. #4) Actually minimize addiction instead of maximize it. Remember how awful it actually was during prohibition? All the crime, all the dirty activity caused because by it?
In the Education World (I mentioned a bit of this above) I would make sure all General Education teachers get training in Special Ed and with the huge Autism Epidemic, I would be sure the schools and the teachers are prepared. They would discover teaching a spectrum kid is actually helpful to their entire class. I would be sure all the administrators are educated in Special Ed law and if they BLOW IT by not helping a child they have the smallest inkling might have special needs, send those principals out of their offices and into special ed classrooms. Test them on laws and if they fail, they lose their income until the pass their legal exam. Can you tell it was administrators who failed my son? I realize this is more of a state-by-state and district by district thing, but I just wish all our children could be served AND that we, as a society, created a world where uniqueness was treasured rather than hidden off in the special needs ghettoes which exist on so many campuses today.
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 morning Samuel did what ten-year-old boys have been doing for several generations: he hopped on his bicycle, waved goodbye to his Mommy, who would be me, and pedaled off to school. The primary difference for Samuel is he has autism.
How often do we look at people with disabilities and focus so much of our emphasis on the “dis” rather than the “ability”. Samuel has taught me over and over again his life emphasis is on his personal “What I am able to do” rather than what he can’t do.
In actuality, if there are things on his “can’t do” list, I can guarantee he is plotting a way to make it happen while sitting at his desk in his classroom, arming himself with facts, figures and roadmaps to his scholastic success.
Four years ago when Samuel was diagnosed with autism, my worry and mantra was, “My son will never be ‘normal’.” People would either shake their fingers at me or roll their eyes and whisper or shout, “What is normal anyway? Who wants to be normal?”
I just want him to be able to negotiate the world.
He is doing exactly that and he is his own best teacher. He doesn’t put himself into a box marked “wrong” he is constantly expanding his capability to ride his bicycle, to discover new things, to notice nuances in the community and to help others feel better, too.
As advocates for our children, we may think we are protecting them by putting them into a “you are disabled” box or a “I must protect you from anything that would harm you” bubble.
Believe me when I tell you this: you do more for your children in the long run by allowing them to stretch and grow through the uncomfortable patches and come out the other side without thinking they need your help at every step of the way.
The ride may feel wobbly, just like Samuel’s bicycle riding first felt wobbly, but before you know it you and your child will have nourished a relationship and a lifestyle based on what he CAN do rather than focusing on what he CAN’T do.
He can achieve more than you think he can.
He can’t if you are constantly worried and hovering over his every move, giving instruction.
He can survive, even thrive, when you believe in him.
You can survive his growing independence.
This may be among the most important things you learn as a parent advocate.
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