In The News

Good Morning America

~ joannedesimone ~ 4 Comments

Earlier this month, Sebastian and I filmed a segment with GMA3. It aired today. You can watch it here.

It is my greatest hope that our message reaches every student who plans to attend an inclusive college program and wants to participate in NCAA Division III sports. I want students and coaches in elementary, middle and high schools across the country to know this is something they can work towards. Most of all, I want inclusivity in schools to grow to the point that all students with disabilities know that they truly belong in every aspect of their academic communities.

Since our story came out in the Philadelphia Inquirer last month, a lot of my friends have called to say they admire my tenacity. I’ll admit, when I first approached Gwynedd Mercy University to help us secure this waiver, it was never my intention to take no for an answer. I was ready with several back up plans if our first effort failed. While it’s true that I have been an advocate for a very long time, it was only during my preparation for this GMA3 piece that I realized what drives this- not taking no for an answer- attitude.

Years ago, when we lived in Brooklyn, Sebastian had a particularly difficult kindergarten experience. The school didn’t want him, but they didn’t really help us find an appropriate school either. Every day I would walk Sebastian to school knowing there would probably be some kind of negative report later that afternoon. Every day my five year old autistic son, who struggled to communicate, would look me in the eyes and say, “Find me a new school, mommy.” And I couldn’t make it happen. Every day I knew I had failed him. I had allowed a system to fail him. So, I made it my mission to be sure another system would never fail him again.

While I was surprised to realize this drive comes from a place of deep hurt, I am thrilled that it has resulted in such a positive, wide-spread change.

Congratulations to us all!

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

~ joannedesimone ~ 3 Comments

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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 →

A First Step

~ joannedesimone ~ 5 Comments

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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)

A Controversial Treatment

~ joannedesimone ~ 6 Comments

 

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Hardware in Benjamin’s leg to repair a fracture. Also, shows his dislocating hip prior to surgery.

 

Over the weekend, I read an article in the NY Times titled Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth? I remember the story of “Ashley X” in 2006 whose parents chose to stunt her growth through surgery (think hysterectomy, breast nodule removal) and hormone therapy. This intervention is as controversial now as it was then. Comments range from (I’ll paraphrase) God bless the families faced with such hardships to Therapies that mutilate children and strip the rights and voices of the differently abled are 100% unacceptable. It’s a heated debate and parents are in the hot seat.

Continue reading →

On my mind: A little boy in Chicago

~ joannedesimone ~ 3 Comments

In the spirit of increasing awareness I plan to share special needs related stories currently in the news…

There are several things that troubled me after reading “It was heartbreaking to see my child separated and wearing a trash bag” in The Washington Post.

Imagine it’s the second day of school.  You stop by your 5 year old child’s classroom to find him isolated from the others and sporting a garbage bag poncho because his epilepsy causes him to drool.

Not isolated because he was sick and not wearing a plastic bag fashioned into a smock for a super fun messy art project.

Imagine talking to the teacher, expressing concern about the situation, explaining that there’s extra clothes and bibs in your child’s bag, and offering to send in disposable gloves.

Imagine your son can’t speak so you act as his voice, assume you’ve been heard only to show up the next day to find your son again alone dressed in a garbage bag.

Blood boiling yet?  Hold on.  The best part is still coming. Continue reading →