Seventeen Months Later

black calendar close up composition
Photo by Pixabay on Pexels.com

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

Advertisements

Be Kind

img_4122.jpg

 

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

black and white black and white depressed depression
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

Little Devil (1)
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.

40450933534_9ba113e875_m

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

Exceptional Parent

As a special educator, I’ve worked in preschools and as an early intervention provider. While I loved working with babies and children, I found my greatest passion is working with parents. Having the opportunity to ease a parent’s stress by showing them teaching strategies or just listening to their fears and frustrations is fulfilling work. Nothing feels better than teaching parents how to advocate for their children’s educational rights.

Continue reading

Good Old Teletubbies

Last week Benjamin had a standard follow up visit with his neurologist. The first part of the visit included an EEG to check the electrical activity in his brain. The one and only normal EEG Benjamin had was when he was four months old. He hasn’t been seizure free for 16 years, but his daily seizures are brief and manageable. Unlike most of the epilepsy moms I know, I’m not expecting or even fantasizing about a change. Things are good the way they are. It’s been 20 months since Benjamin has needed a dose of emergency Valium to break free from a persistent seizure.

Continue reading