You might say my family is doubly blessed. We not only have a son with a disability, but I also have 2 rare disorders. I also have multiple doctor visits and medications. At times, I am not at my best, which is the most frustrating of all.
I have a connective tissue and a platelet disorder. That is a dangerous recipe for a parent of a teen with autism and aggression issues. Hitting or kicking outbursts can send me to the ER for an 8-hour round of plasma.
That’s 8 hours I don't want to be away from my family. It's 8 hours I worry about who is giving my son the proper medications. Who is making sure he goes to the restroom, as he is not completely toilet trained? Who is making sure to tuck him in and remind him that he is our special angel?
As parents, we all think about our children's futures. I worry about it more simply because my poor body is literally a walking time bomb. I have spent 3 months in a hospital due to a ruptured intestine and over a month on a ventilator. It's hard to be a mom. But try being a mom on Christmas Day in the hospital with tubes coming out of your body.
So I have created a binder for my son. It has a list of all his medications, their dosages, what each medication is for, and how to give it. It has a list of all his doctors and their contact information. It has his seizure and asthma protocols, like the ones that the schools require us to have on file. It must always be kept updated.
I also have a list of random tips for my son’s care and well-being. It includes his schedule on weekdays, weekends, his favorite things, bedtime routine, and anything else I can think of. Just being a little more prepared sets my mind at ease.
We are lucky to have family in town in case help is needed. Staying in touch with neighbors and alerting teachers is part of our safety net. My advice to other parents is to always have a Plan B. You never know when you may need to call on someone in your absence.
Planning for a time when you can’t care for your child is difficult and may be frightening. But it is one of the most important things you can do.
As parents, the work of assuring our child feels safe, secure, and valued at home, school, and in the community is challenging and full of risks. In Sandra Kaufmann’s book, she shares relatable ordeals and hard decisions their family had to make for their daughter with disabilities.
Categories: Family Support
I have learned that not everyone is capable of providing emotional support to parents of children with disabilities. There is limited help available with the day-to-day struggles associated with managing time, appointments, and responsibilities.
Categories: Family Support