I try not to think about the life we might have had, if they were typical children. What helps me is to focus on the work we do with them each day, trying to find more effective ways to teach.
Our lives have of course been changed unbelievably. No one expects to have one, never mind two disabled children. It is very painful to give up everything that you anticipated for your child. There are also so many worries, that parents of typical children never have. Every parent of a disabled child feels afraid to die, afraid of what will happen after they can no longer care for their child. I think about that every day.
Our daily life has changed in that all the little things you might take for granted, can be much more difficult. I can never leave the girls alone in the house. Childcare for disabled teenagers can be hard to find and very expensive, so that you think twice before going out in the evening. Planning a holiday is like organising a military expedition. Both girls have sleeping problems and sleep deprivation can become a way of life.
We have had to change our house to make it more childsafe, with childproof locks on doors and windows; and easier to keep clean, e.g. wood floors, washable paint on the walls, machine washable rugs, and covers on our furniture.
Going out with the girls can be stressful. They may wander off, or make sudden loud noises. We work very hard to get them to act appropriately in public. Right now we are trying to increase their tolerance for waiting in queues; if the wait is longer than about 3-4 minutes we leave the shop rather than risk a tantrum. It can be very wearing to be stared at when my daughters act inappropriately, but I guess that people are just curious. Mostly, I’ve been impressed with peoples’ kindness, once they understand that my children have autism.
