When Benjamin was younger, Halloween was a very big deal. John has created many intricate wheelchair costumes. Honey, Target’s new line of wheelchair friendly costumes has nothing on you!

Benjamin’s costumes are a ton of work. They take hours and hours of shopping, planning, problem solving, and creating. As someone who has zero art talent, I am always floored by John’s creations.

It’s been a few years since John’s had the time to make an original costume, but this year Benjamin’s teacher asked us to help make his last Halloween in school special. So John spent a good 30 plus hours in the basement putting it all together.

Benjamin absolutely loves it. I know John agrees that Benjamin’s joy is worth all the effort.

Benjamin is worth every effort. I’m certain that everyone reading this will agree, but the truth is we still encounter people who don’t think the way we do.

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Today we celebrate Benjamin. Somehow 20 years have slipped by. I swear his birthday has hit me harder than my own post 5 – 0 birthdays.

Since he was diagnosed at four and a half months old, we’ve lived every day conscious of, and in awe of his strength and fragility. We know his life expectancy is uncertain. We also know Benjamin is happy, has a strong will to survive, and that we have very little control over the matter.

So we celebrate Benjamin. Every. Day. By sharing the books and music and TV shows he loves. By looking into his eyes and sharing his laughter. Today we will also celebrate with lots of cake and presents. Next month we’ll celebrate again with family. I’ve decided there’s no reason not to celebrate at every possible opportunity.

Over the past few months, I’ve watched an unsettling number of parents in our lissencephaly world bury their children. Their strength and grief are incredible to witness. So for them, I celebrate Benjamin because he’s with me.

Enjoy some pictures of Benjamin’s life.

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Happy 20th birthday my beautiful, beautiful boy. Mama loves you!

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

Seventeen months ago, we celebrated the delivery of Benjamin’s shower chair. Last week I received an email from the equipment vendor. Apparently they didn’t get paid and said it was because we did not provide them with letters and a script from a doctor enrolled in NJ Medicaid.

Um, no. Continue reading →

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.

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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 →