Brotherly Love

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Benjamin’s been fighting a cold for the past three weeks. Last night he was crying, loudly. Sebastian closed his door so he could complete his homework. For years, Sebastian would fall apart when Benjamin cried. He would yell at me, “Go take care of him.” He keep saying the noise was too much for him to handle. Three years ago, when Benjamin had his hip surgery, I bought Sebastian a pair of Peltor ear muffs. I always do my best to make Benjamin happy, but I’m not a miracle worker. I knew there would be a lot of crying after hip surgery. And there was. I will never forget Sebastian sitting in the car, out in the garage, wearing his ear muffs. Continue reading

Dear Benjamin

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Dear Benjamin,

Today Daddy and I will pick you up early from school and take you to a neurology appointment. We need the doctor to sign some legal papers. I can’t believe that in just 18 days you will turn 18 years old. I’m not sure yet how we will celebrate a birthday that had never been guaranteed. Do you know how amazing you are?

You were about five months old when the doctor confirmed you had lissencephaly. We read that the average life expectancy for a child with this brain malformation was two years. When you were 18 months old, we traveled to Chicago to see another doctor who said you had a 50% chance of living to 10 years old. Those numbers scared me. To this day, I hold my breath when I open your door in the morning and I am grateful when I hear you breathing. There are few things better in this world than the smile you give me every day before you’ve even opened your eyes. Continue reading

We’re All Different

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I was going to share some good news with you the other day, but I was consumed with the debate between All Lives Matter and Black Lives Matter after the deaths of Philando Castile, and Alton Sterling. It’s times like this I’m a little relieved that my boys are mostly oblivious to anything outside their little world. But I have a responsibility to teach them how to interact, communicate, and treat others with respect.

It’s not easy to talk about race, especially with children who need everything spelled out in the simplest form.

I’m off the hook with Benjamin. He does not have the capacity to hate, or discriminate against others. I’ve seen him wake up from a 10 1/2 hour surgery and smile at the doctor. Simple as he is, he is not without opinions. He complains in his own way about TV shows and the food I serve him. He was also known, as a baby, to throw up as soon as his physical therapist touched him. He truly loved her (smiled when we were just socializing)….just not what she stood for. So, he’s always been way ahead of the game.

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A First Step

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Last night I went to a poetry reading. The recent massacre in Orlando served as a prompt for one of the author’s (Edwin Romond) poems. Although I don’t remember his exact words, I can’t release the message.

“There’s no value in teaching reading and arithmetic if it doesn’t serve to also teach humanity.”

Before the poetry reading I found this article in The Washington Post by Suzanne Nelson, Books to help teach kids to be inclusive and compassionate. The author begins with a story about a regretful experience she had when she was 12. She is haunted by the fact that she wasn’t brave or compassionate enough to attend a birthday party for a special needs student she had been paired with at school for peer tutoring. The author knows she wasn’t supported by the adults at school well enough to effectively communicate and bond with her hearing impaired peer, but she still blames herself. On the day of the party she went to the peer’s home, dropped off a gift and apologized for her inability to stay. The peer’s mother revealed, “No one is coming to the party.”

I’m a huge fan of using books to teach real life lessons and Ms. Nelson also realizes that it’s only the first step. As she says, “Contact and communication must extend beyond classrooms to foster understanding and genuine, long-lasting connections and friendships.”

As the mother of a 13-year-old boy on the autistic spectrum I am spending more and more time thinking about this. Sebastian has finally acquired enough social skills and motivation to reach out to peers beyond the confines of his self-contained classmates. In school the students are truly kind and Sebastian has felt the welcoming arms of inclusion in his non-academic classes and in after school sports teams. He’s collected teammate’s phone numbers and has, to some extent, been successful at arranging the occasional weekend movie gathering. He even got invited to a birthday party this year. I know Sebastian’s teachers and therapists have been instrumental in supporting him and the other students to make these connections. For that I will always be grateful.

While this all sounds wonderful, the challenges are still real because every middle school child is trying to figure out who they are, and where they belong. As parents we both guide and have to allow our children to be independent. We can’t force relationships. Sebastian has a lot to learn about the differences between an acquaintance and a friend. I can’t help but feel how wide the gap is between him and all the well-meaning children whose numbers sit in Sebastian’s contacts- because his phone never rings and he’s beginning to worry about not having friends.

I’m just trying to figure out how to help Sebastian stay motivated, and how to foster inclusion, compassion, and humanity.  So that diversity does not create fear, hatred, and massacre.

This is my first step. What will yours be?

 

 

photo credit: the great solar flare of peace : rainbow warrior flag, harvey milk plaza, san francisco (2014) via photopin (license)

The Small Bus

 

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When we lived in Brooklyn the most stressful part of the day was, like for most families, the morning.  Getting Benjamin up at 6am, dressing, comforting him through seizures, medicating, and strapping him into his wheelchair in time for his 7am bus was like running a marathon every day.  We also had to wait for his transportation nurse who had her own struggles with parking.

Those of us from Brooklyn can write pages about parking problems, and the overall fun of driving in a crowded city with its less than patient fellow commuters.  I can tell you how little I appreciated drivers who honked at Benjamin’s school bus in the morning.  It takes time to carry a child in a wheelchair down the front steps, load him onto the bus lift, and tie down his chair.  It’s a drag to wait.  Sorry.  Except, I wasn’t sorry and I was sure to wear my very best Brooklyn Too bad for you face as I stared down the piece of work leaning on the car horn. Continue reading