Homeschooling a child with multiple disabilitlies..I need guidance..
My son MIchael is 9 years old and has severe autism, is nonverbal, has a life threatening seizure disorder, and registers on about a 1 year olds level. He is not toilet trained, needs me to do his daily tasks (bathing, dressing, changing, feeding etc ect). We just moved from PA to NC. His seizures are bad. He is frequently in the PICU (pediatric intensive care unit) on a ventilator because with these seizures that go on for hours, he stops breathing all together. We have been told 1 and 5 with his condition do not make it, and the odds of fatality increase with age. He is 24 days seizure today (A WONDERFUL MILESTONE!!!), but was going every 7-10 days having a seizure that would last hours and hours. We are new to Versed, and with the last 3, he did not have to be intubated and recovered well at home thanks to this wonderful medication.
He is/would be in a classroom labeled "Multiple Disabilities Classroom" to kind of give you an example. They work on IEP goals (like toileting, pointing at objects, climbing stairs, whatever is in the IEP). They do a lot of hand over hand things.
We have a problem this year. The school will not administer Versed (it would be intranasaly, and is the only emergency seizure medication that has worked so far). We have tried others like Diastat and it never worked, he would end up on a ventilator in the PICU fighting for his life, still convulsing hours and hours later. Versed is not prepackaged, and there a numerous steps to draw up the medication, take apart the needle from the syringe, add the nasal canula to the syringe, and administer it. It's a process, that the school nurse and staff cannot due unfortunately. Which leaves us as parents fighting for our boy and looking at options.
Has anyone here ever homeschooled a child like my Michael? Has anyone any other ideas to get him to be safe at school? We are looking at a private nurse to accompany him back and forth to school. I would homeschool him if that was our only option (it's very hard on a daily basis having Michael, and the break that he goes to school is nice to recoup). In all honestly all my time is spent caring for him in one way or another. I spend hours each night watching his seizure monitors. I spend numerous time each day fighting with insurance, taking him to appointments, feeding changing bathing playing etc. In a lot of ways he is like a 9 year old newborn to kind of give you guys an idea of what our world is like. I love him and will always fight for him though, and none of this was a complaint, more like showing the reason why the break is nice.
Other than a private nurse and homeschooling I'm kind of out of ideas. I have calls around all over finding an advocate to help with this entire situation (epilespy foundation and arc of nc).