They don’t adjust to adult life because of poor school performance, less full-time employment and subsequent lower income.
Parents spend every ounce of their emotional energy coping with the unending procedures and consoling their gravely ill child. Now is all they can handle. They can’t afford the luxury of dreaming that their child will live.
However, they need to prepare for adulthood by arranging frequent evaluations to monitor academic performance as well as mental health counseling to deal with the trauma of having a life-threatening disease.
If you know a family with these challenges, consider gently broaching this subject so they can discuss it with their doctors.
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