Happy 16th Birthday Sebastian

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You were born four weeks early

On your uncle’s birthday

We hadn’t even picked a name for you

I wasn’t ready

And yet

I was so ready to hold you

Grandma came to the hospital

To watch you enter the world

The picture of the two of you together

Still makes me happy

Life seemed simple

When I stared at your perfect face

The name Sebastian

Begged to be chosen

Such a big name

For a tiny boy

The nurse said

Sebastian sounds like the name of someone bound to do important things

On the first day of your life

As with every day prior to your arrival

My biggest wish for you

Was health

Because your three year old brother already had so many medical complications

I didn’t have specific dreams for you

Benjamin taught me

How little I could control

On and off as you grew

Small things worried me

You didn’t always react when I called you

Perhaps I chose the wrong name

When the doctor diagnosed you with autism

I feared for your future

I wished I had wished for more than good health

So I started wishing

For you to speak

To listen

To understand

You did all those things

Not when or how I wanted

But you did

Today you are 16 years old

You wished for three dvd’s

Three books

To see a movie with a friend

And a trip to your favorite diner for a meal and a slice of apple pie

Pretty simple list

Yesterday I watched your teammates gather to sing happy birthday to you

Your smile assured me

That moment was more important to you

Than the presents

That moment was important to me too

Autism hasn’t and won’t

Keep you from finding your place in this world

The name Sebastian suits you very well

You have already done important things

I look forward to watching all you continue to do

Happy Birthday

Love

Mom

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Sports Lessons

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When Sebastian was in middle school, he joined the cross country team. I was thrilled about him participating in sports, until he signed up for winter wrestling. Early on I approached the coach.

“I just want you to know, I’m not the type of mom who will insist that her kid gets time on the mat. There are safety issues and it’s up to you to determine if he’s ready to compete. We’re in this for the life lessons.” The coach looked at me like I had five heads.

Before I was a mom or a special educator, I was a modern dancer. Throughout the years I’ve incorporated dance lessons into motherhood. I’ve written an entire book about it, which I hope to publish in the near future.

It has been my goal to use Sebastian’s love of running to help him generalize skills from sports to life. Running has given him a greater sense of independence and accountability. It’s a work in progress, but he is learning to communicate with his coach and teammates and follow directions. He independently organizes his workout schedule, and packs his workout clothes every night. His meet results offer concrete data showing how effort and commitment lead to progress. These are all areas Sebastian has struggled with in his academic life. Now I can point to these experiences and show him how they relate not only to running, but to the classroom and beyond. Continue reading

Be Kind

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As summer was winding down, I thought about Sebastian’s growth and remembered an essay I wrote when he was still in middle school. I used this piece for an audition and then put it aside. I’m happy to say you can find the essay here on Motherwell today.

Revisiting this essay allowed me to appreciate how much he continues to grow, and how he has found kindness in high school.

Wishing everyone a wonderful school year!

Confronting Silence

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Photo by Kat Jayne on Pexels.com

As the end of Sebastian’s freshman year of high school approached, a decision I’d made and suppressed months earlier resurfaced from my gut.

Early in the school year, one of Sebastian’s general education teachers refused to comply with his IEP (Individualized Education Program) – the legal document created by his school team which details his strengths, weakness, goals, modifications and accommodations. Sebastian’s case manager spoke to this teacher several times in an effort to rectify the situation but the refusal continued.

I took this as an opportunity to teach Sebastian more about his IEP and explained that it’s an instruction manual of sorts for his teachers. We read his modifications together and I made it clear that his teacher was failing to do what was expected. We discussed self-advocacy and how there’s a time to fight hard and a time to walk away.

His case manager offered a few options and Sebastian decided to drop the class. I supported his decision, even though I wasn’t happy. I worried that by leaving the class, we were reinforcing this teacher’s inappropriate behavior. I feared we’d taught, even just one student in the class, that Sebastian didn’t belong there.

Continue reading

A Runner

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Sebastian at 11-months-old eager to take off on two feet.

When Sebastian was little, I called him my flight risk. As soon as he learned to walk, he began to run. Like many autistic children, he would run away for inexplicable reasons heading to unknown destinations. With little safety awareness or enough verbal skills to keep him out of trouble, I feared the day I’d lose him for good.

Once, when Sebastian was in kindergarten in NY, he dashed out of the school cafeteria. His teachers rushed to the exit adjacent to the lunchroom and searched the perimeter. The school was located near a busy highway. Although he had been found by the time his teacher called me, all I could imagine was a speeding car flinging my tiny boy’s body to the side of of the road.

It took several years, a couple of police incidents, and many conversations to teach Sebastian not to run. Continue reading

Angry About the UK Pulling Alfie Evans’ Plug? Don’t stop there.

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On Saturday, Alfie Evans, a 23 month old British boy died after the UK courts decided his life was not worth sustaining and ordered the removal of life support. Last year the world saw this type of battle and outcome in the UK with the Charlie Gard case.

As Benjamin’s mother, I am furious at the fact that parents in the UK are so easily stripped of their right to make medical decisions for their children. The UK’s universal healthcare system finds it appropriate to disregard a parent’s relationship with their child and the right for every human being to live. Continue reading