We met with the behavioural specialist last week and she had a very useful piece of advice for us. I was commenting that I was feeling worn out and discouraged, even though by all objective measures, things are improved almost beyond recognition. It's now possible to take Alex and Nathan out with only one adult because Alex will now follow verbal commands and is less likely to bolt. He's cooperating much more (without a standard complaint before cooperating). He's making great strides in toileting with the therapists.
She explained that feeling discouraged is actually a positive sign. When things are consistently bad, people aren't discouraged. They don't expect anything better, they just hunker and down and cope with it. They develop a kind of emotional callous to keep from getting upset.
When things start to improve, parents can find themselves feeling worse than they did when things were awful. Because now they have hope and expectations.
It makes me feel better about the situation. I was being hard on myself, telling myself I should be happy and grateful instead of discouraged. Now I can be easier, knowing this is part of the emotional process.