Question:-From New Hampshire--As the parents of a 10-year-old boy who has been mentally and physically disabled since birth, we have been concerned about what we will do when he becomes an adult. He now weighs more than 75 pounds and is growing rapidly. He can not do anything for himself, is still in diapers, does not sit or stand, and must be carried everywhere and turned regularly. We got along pretty well until I was diagnosed with genetic back problems that do not allow me to lift him. This requires my husband to take leave time from work to help me take our son to the doctor, etc.

We made the decision for me to give up my career as a teacher to stay at home to raise our son. We also decided not to have any more children because of the time commitment to raise our son. We have not had time away from him since he was just over a year old, and his rapid growth is fast becoming a burden that we may not be able to overcome.

Because we can’t afford outside sitters and help, we had been talking to his pediatrician about options that would allow us to keep him at home, including ways in which to slow or stop his growth, when we read about what Ashley’s parents had done in Seattle. Without some help, I am afraid that we will not be able to keep our son at home with us because of both physical and financial issues. If you have heard from other readers with this problem, please let us know how they may have handled it and the legalities involved.

Answer: The recent flurry of press activity concerning the parents of Ashley, the 9-year old mentally and physically disabled girl who chose to stunt her growth through surgery and hormone treatments to in order to maintain her in a more controllable size so they could keep her at home, has only brought to the forefront the myriad of issues that face parents of disabled children.

First and foremost, since the course of action parents take when it comes to caring for a disabled child depends on the particular family circumstances, there is no “rule of thumb” that will fit all situations.

Second, caregiver parents who wish to keep disabled children at home with them for as long as possible must be given wide latitude when it comes to making these family decisions. While “talking head” medical ethicists are enlisted by network television and the press to give opinions about, and pass judgment on, parents’ choices in this area without knowing all of the facts, we don’t believe, in good conscience, that anyone has the right to criticize family decisions when they do not know all of the facts.

That said, when uninvolved medical ethicists opine on whether a chosen course of treatment benefits the child or the parents, they, in our view, miss the point that the decision must benefit the family unit. If, for example, you and your husband are unable to keep your son at home with you, he will have to be placed in a nursing facility at a much greater cost than the SSI and Medicaid he currently receives. In addition, he will go without the warm, loving family relationship in a home environment that is most important.

Bottom Line: There is no right or wrong. While our society is quick to condemn choices made by caring and loving parents, by and large, the options provided to help caregivers like you are severely lacking. You should make a choice that fits your and your son’s needs and not concern yourselves with the opinions of those who have no idea what it is like to walk in your shoes. For more information about Ashley, her parents’ blog can be found at click here .