In my practice, I see children of all levels of function. I have evaluated some children who are actually OVER 100% by 20-30%. I see many children in the 90-ish percentile. Many children begin their programs in the 70-ish percentile. And yet, sometimes when I make my recommendations about how to help these children, I see parents complain and even cry because they will need to change their diet or incorporate creeping/crawling into their day. And somehow doing some portion of program ten times a day can push them right over the edge.
And then I meet with mothers whose children are functioning below 10-15%. And they must CONSTANTLY be suctioning trachs, watching for aspiration. Feeding can take an hour or more and must be done 4-5 times a days. They would be delighted if their child could make sounds at all, much less talk too much----if their child could lift their head, much less run on the track team in high school. They are perhaps the ONLY person in the world who believes their child is a person worth the investment of time and resources. And yet, when I give recommendations to the mothers of these children they say, "Bring it!" They are in a battle to save their child and they are absolutely ready to do whatever it takes. And believe me when I say my recommendations are as extreme as the problem we're trying to solve---they always are.
So, sometimes I get torn when I see the divergent reactions. The mothers of children who are profoundly affected would be prostrate on the ground with tears of joy to only need to make moderate changes in their life for a couple of years. They would praise God with ever fiber of their being if they had to do things only 10 times a day instead of around the clock.
I'm sure there are lots of reasons for the different reactions, and I am NOT trying to condemn anyone. But sometimes I get torn---especially if I meet with the opposite ends of the spectrum on the same day. I wish parents with very hurt children could understand that "almost well" kids are still a big challenge and it's not easy---EVER. And I wish parents of "almost well" children could understand how much they have and what a small thing they are asked to do in order to allow that child to really soar. Both ends of this spectrum tear at my heart----a lot. And I wish I could help them all see the whole vista. I am torn.