I hate that I have to care.
I recently found out that a local theatre company (Young Peoples Theatre) offers relaxed performances, suitable for autistic children and other who find loud noises and darkness a barrier to attending live theatre. This isn’t a new concept, movie theatres have been doing this for a while.
I had taken acting classes through YPT when I was a child, so I was really happy that they continue to innovate and be a good community partner. At the same time it made me cry. I hate that I have to care about this. I love both my sons. One has autism, the other is neurotypical. They are kind, smart, and funny kids.
But I hate that I have to care about all these extras. Finding the movies, the theatres and the experiences that are easier for him. I hate that we have to live a Tetris puzzle schedule to get him to pre-school and different appointments with his occupational therapist, different educational opportunities for my wife and I … and trying not to neglect our youngest son.
One of the hardest parts of having a child with special needs, especially autism, which is essentially an invisible disability, is that to others, we may look like we have it all together. It ain’t so. We’re tired, worried, and stressed. We fight to get out children ready to go out. I know, most parents are saying “so do we!”. Well, all I can say is: either your children is an undiagnosed autistic, or I can’t really make you understand. The difference is the frequency, duration, and reasons for his behaviour. He doesn’t meltdown because he’s being obstinate, he’s melting down because there’s something that doesn’t compute. His inputs are messed up and his wires get crossed.
I love him dearly, I really would’t change anything about him. He’s the child God gave us and I’m excited to see him grow. But, I hate all the extra stuff we have to manage.
When someone gets sick, like really sick (Cancer, breaks a leg), their immediate community of family and friends can rally around them. People organize meal trains, respite care (babysitting), laundry, or other help. When your child has an invisible disability like autism, people can’t see it and they can’t understand it, so rarely does the calvary come. We’re very lucky in that we have a chance every week to get away for a few hours for a date night. We’ve always been able to secure funding for a respite care worker a few hours a week (well, we can do whatever we want, but the funding is limited, so we ration to make it last). We have a great worker and our son loves playing her. She works with him on his skills and development).
On the other hand, when people ask if there’s anything they can do, I feel guilty asking them for help, like a meal. One one hand, this isn’t something that is just going to end. Aidan, God willing, will have a very long life, and there will be different stages of this as he grows up. Are we going to ask for help until he’s in college? There’s nothing wrong with asking for help and if people offer, I suppose you should assume they are asking out of a genuine desire to help.
I’ll do whatever we have to to help our son have fulfilling life. But, I don’t have to like what we have to go through to do it.