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.
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.
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.
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 →
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 →
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.
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.
When Sebastian was eight years old, I took him for a routine dental visit. By that age he was brushing his teeth by himself, which I considered a major accomplishment. Like many parents, I struggled to teach Sebastian good oral care. At some point, he didn’t want me to do the brushing but on his own he would spend 30 seconds cleaning his teeth. No doubt, there were sensory issues including a very specific preference for toothpaste. Oh the stress of running out of toothpaste and not being able to find it in any store within a five mile radius…
As Sebastian sat in the dentist chair that day, I tried to keep him calm with superficial conversation and general reassurances. He was fidgeting. I placed my hands on his because the dentist asked him more than once to keep them down. His tone was a little too stern for my liking. Sebastian was obviously anxious, which made me anxious. Sure in a perfect world I would have asked the doctor to take a break, show Sebastian the dental instruments, talk to him about what he was doing and what to expect.
The world isn’t perfect and neither am I. I took a few deep breaths and tried to reassure Sebastian that the cleaning would soon be over. When the dentist finished, he looked at me and said, “You could be doing a better job cleaning his teeth.”
Benjamin loved his brother from the very first moment he saw Sebastian.
I’ll admit many of Benjamin’s classmates had siblings and I longed for my boy to have that kind of bond. But for awhile, Sebastian treated Benjamin like a piece of furniture.
I remember after Sebastian was diagnosed on the autistic spectrum, my brother James said, “At least you know he will improve.” I knew he was right, but in the heat of crisis that truth didn’t comfort me. It didn’t matter to me that Sebastian’s situation wasn’t like Benjamin’s- where doctors couldn’t do much and the average life expectancy was two years. I had two boys whose futures scared the hell out of me.
I’ve written about Benjamin and Sebastian’s bond in the past and how wrong I was about Sebastian’s actions and feelings, and I love it when he shows me how right my brother James was all those years ago.
Last May we had an opportunity to participate in a Taiwanese documentary about multicultural differences regarding disability rights related to accessibility, education, and sex. I’ll admit, some of their questions on sexual rights caught me off guard.
I had no idea that other countries provided sex as a service to people with disabilities. They wanted to know if it was a legal option, would I request this service for Benjamin. The good Catholic school girl in me first told them, “Parents in the US don’t like to talk about sex.” But they weren’t buying it. After a deep breath, I thought about the concept of Maslow’s Hierarchy and explained that our top priority is meeting Benjamin’s health needs. Sex just isn’t on our radar.
Later, with my permission, the crew interviewed Sebastian and asked him if he was interested in dating. While I sat on the sideline, more than a tad terrified about what my teenage son might say, Sebastian easily answered, “Yes, but I know it takes a long time to fall in love and get married.”
I love that my autistic son was the one to put the emphasis on building relationships. Plus, he made a super awkward situation comfortable.
I hope to see the whole film in the near future, but for now I’m excited to share this clip highlighting a much more comfortable subject. In case I haven’t cued this up properly, skip to 1:58.