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
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.
Last week at back to school night, one of Sebastian’s teachers said, “He’s a compliant student.” I laughed because in this respect he most definitely takes after me.
I’m the one on a deserted road at midnight who comes to a complete stop at the stop sign and who feels guilty if I cross the street against the light. I like blaming my Catholic school upbringing for the need to be hyper-compliant, but the truth is I have been a perfectionist for as long as I can remember. My earliest memories of kindergarten include a pretend wooden fruit stand and a coloring assignment. After completing the homework sheet, I realized I had done it all wrong. After some amount of hysterics, my mother used a butter knife to scrap off the crayon so I could fix it.
It took years to calm my perfectionist ways. I will say the compliance trait does come in very handy in my special needs parenting life, especially when it comes to Benjamin’s medical needs and anything related to his government benefits. But sometimes being compliant in an imperfect world is frustrating.