Soon after Sarah was diagnosed, we were told that if she could not move freely because of her restricted joints, she might not be able to orient her body in the world and would have perception problems. She never had a problem. A doctor noticed that Sarah's face is asymmetrical and asked if she had double vision. She never has. These questions planted seeds of dread and worry which I have learned to put into perspective.
Parents have to stay in charge.
We can't let pity or guilt get in the way of setting limits and giving direction to all of our children. During times when my husband and I have become too tired or confused to make and enforce rules, the children have become ill-behaved and demanding and the whole family has floundered. It surprises me how well our children respond when we enforce stricter guidelines. Even during periods of flare-ups, when Sarah is in severe pain, she reacts positively when we tell her how she can and cannot behave. The highs are higher and the lows are lower.