Should severely disabled kids be kept small?

[katy]

Having a person in some type of group home is not necessarily the same as “locking them away”. The goal would be to have a truly loving home for folks who cannot stay anymore in their own homes. Maybe this is the 21st century version of the old time need for orphanages.

 

[harinkj]

These parents are sick!! :tsktsk: :bigyikes:

The poor child.

• kathie :bowdown:

 

[JohnCWalker]

Yesterday’s readings brought to my attention again the importance of the unity of the body and how it is incomplete without its members. While the reference in Corinthians is used as a metaphor to describe the importance of each member of the body of Christ, it is no less applicable in its true form in describing the unity of the physical body:

For the body does not consist of one member but of many. If the foot should say, 'Because I am not a hand, I do not belong to the body," that would not make it any less a part of the body. And if the ear should say, ‘Because I am not an eye, I do not belong to the body,’ that would not make it any less a part of the body. If the whole body were an eye, where would be the hearing? If the whole body were an ear, where would be the sense of smell? But as it is, God arranged the organs in the body, each one of them, as he chose. If all were a single organ, where would the body be? As it is, there are many parts, yet one body. The eye cannot say to the hand, ‘I have no need of you,’ nor again the head to the feet, ‘I have no need of you.’ On the contrary, the parts of the body which seem to be weaker are indispensable, and those parts of the body which we think less honorable we invest with the greater honor, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so adjusted the body, giving the greater honor to the inferior part, that there may be no discord in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together. (Ignatius RSV-CE, 1 Cor 12: 14-26)

We must not forget that “[m]an, though made of body and soul, is a unity. Through his very bodily condition he sums up in himself the elements of the material world. Through him they are thus brought to their highest perfection and can raise their voice in praise freely given to the Creator. For this reason man may not despise his bodily life. Rather he is obliged to regard his body as good and to hold it in honor since God has created it and will raise it up on the last day.” (CCC 364)

This obligation would be even more serious for someone charged with the responsibility for the care of someone else’s body.

The body, while it will temporarily die, will be eternally immortal after the resurrection. Hence, the care and respect of the body cannot be in the context that it is mortal, but eternal. Non-therapeutic amputations, sterilizations, and mutilations of the body deny respect for this truth.

 

[Sixtus]

This case carries a strong smell of eugenics

I am delighted this case has come to light. It highlights some of the things on the agenda.

My wife is a midwife. She is most distressed that a leading agency in UK is looking at the whole issue of profound and complex disabilities.

In particular most parents do not realise what they are
taking on when they say they want to keep a disabled
child. By the time the child has reached about 6-years,
the parents may well have regretted their decision not
to abort. Therefore, parents in this situation should have
the right to mercifully end the childs life at or before the age
of 6, for the health of the affected child or that of the family

I regret I cannot quote the source and will probably get told off by the moderators. I am very sorry but my wife is an intelligent emotionally stable person. She would not say that if it was not the case.

I think it is time to watch all such issues and to challenge them whenever you hear or read anything that supports the compulsory ending of a live childs life on the basis ‘it does not want to live’. Who is to say that

 

[JohnCWalker]

I think it is time to watch all such issues and to challenge them whenever you hear or read anything that supports the compulsory ending of a live child’s life on the basis ‘it does not want to live’.

Amen to the call to challenge them!!! It is insufficient for the laity to merely hold opinions in support of the culture of life, but rather, we are specifically charged with the responsibility “to seek the kingdom of God by engaging in temporal affairs and directing them according to God’s will.” (CCC 898).

 

[JohnCWalker]

For this reason man may not despise his bodily life. Rather he is obliged to regard his body as good and to hold it in honor since God has created it and will raise it up on the last day." (CCC 364)

This morning EWTN ran a special program entitled “Messengers of Mercy” which detailed the Sisters of Mary and how they care for the seriously ill and dying. In particular the show demonstrated not only the respect we are to have in caring for each and every human person, but the respect we are to have for each and every spiritual AND physical part of the human person.

 

[concerned2]

My thanks to all the folks on this and the other blogs I’ve looked at that were concerned enough to form and express an opinion about the Ashley Treatment. It is good to know that some folk out there are interested in how the more vulnerable members of our society are treated and are prepared to reflect on the ethics of the newer medical procedures possible. As a person who has shared the past 44years with someone almost as disabled as Ashley, the concern expressed is heartening, even when I find myself disagreeing with some opinions or discounting them as based on limited information/experience.
Having read the Ashley Treatment blog and looked at the posted pictures, it appears to me her parents acted with a clear rationale and intention of sparing their daughter what appeared to be predictable future suffering and of enriching her life. The difficulties they sought to avoid appeared to be valid, likely to occur, and exacerbated by her neurological condition. I would point out to those who suggest that the “mutilation” of her body was unjustified because it was unrelated to ammeliorating her neurological condition that they are simply wrong about the “unrelatedness”. The person I’ve shared the last 44 years with has “conditions and complications” that run to 3/4 of a page, single-spaced, full lines, all devolving from her original neurological problem and needing to be accommodated to create a comfortable daily life. Since Ashley’s parents could not “ammeliorate her neurological condition”, they did what was possible to ammeliorate its negative effects in her life. While I have considerable discomfort with the choices they made, I am also grateful that their particular challenges and options were not ones I was “gifted” with.

 

[jmcrae]

How we treat the most difficult people is a mark of our civilization. If we mutilate them to make them more convenient for us to deal with, what does that say about us?

And what happens if the child gets spontaneously well (as happens extremely rarely), or if a cure is found for this condition, or if she responds unexpectedly well to her therapy and becomes, for all intents and purposes, essentially normal - what then?

 

[harinkj]

If one had read every television script, novel, or movie script, they never could have found or made up something as pathetic as this. The only problem this poor child has is it parents, who made this hideous decision.

• Kathie :bowdown:

 

[concerned2]

Reply to jmcrae.
Couldn’t agree more about how we treat the most vulnerable members of our society being an indicator of our degree of civilization. And it’s pretty shabby treatment that the most vulnerable get, too. Seldom choices about whom they live with, or choices about the “medical care” they receive, if any, once family has exhausted its financial and human resources. Check BC’s Health and Community Care policies if you don’t believe me.
Historically, at least one of BC’s Acute Care Hospitals has refused admission to it’s Emergency Dept. and when admission was gained, denied timely treatment of a “potentially life-threatening” situation (status seizuring). That was 25 years ago (person got the needed intervention outside the hospital situation, survives, thrives and has not attempted to use the facility since) but I suspect the situation continues today complete with the intervention of a tax paid ethicist to explain how scarce health care dollars must be allocated to those considered more worthy. Certainly, our tax-paid physicians feel quite free to refuse to take on as a patient one who might prove time-consuming or intellectually challenging or who is considered to be of as little worth to our society as a person with profound multiple handicaps.
We should research Ashley’s particular form of brain disorder. I do not believe spontaneous cures or miracles are associated while developing problems are predictable. Caregivers with commitment to more than a pay cheque don’t usually have the luxury of waiting for a miracle.

 

[jmcrae]

Caregivers with commitment to more than a pay cheque don’t usually have the luxury of waiting for a miracle.

True, and that’s a good point.

Still, the caregiver also needs to have it in the back of his or her mind, “This person will one day hold me accountable for how I treat her.” As Christians, we know that this will happen on the Judgement Day in the presence of all the nations, but in secular society, we see the disabled being treated literally like dogs and cats - as though there were no rational human spirit residing in that body - or as though Christ Himself were not looking out through those eyes, and hearing through those ears, everything that we are doing and saying to that person.

 

[CathCentrist]

I wont say yes or no.

Case by case basis and depending on the resources and finances and physical capabilities, age, etc of the parent(s) needing to do the caregiving.

 

[ems3]

True, and that’s a good point.

Still, the caregiver also needs to have it in the back of his or her mind, “This person will one day hold me accountable for how I treat her.” As Christians, we know that this will happen on the Judgement Day in the presence of all the nations, but in secular society, we see the disabled being treated literally like dogs and cats - as though there were no rational human spirit residing in that body - or as though Christ Himself were not looking out through those eyes, and hearing through those ears, everything that we are doing and saying to that person.

jmcrae, I love what you say here! I think of this often as I am caring for my severely disabled 14yr. old daughter. I look forward to seeing her in Heaven and hope that she will lovingly greet me and tell me I did a good job taking care of her.

There are times I feel overburdened and even a little resentful because I know there are things I can’t do and freedoms I don’t have because of her needs from me. But then I look at her and she is sooo innocent and totally dependent on me and I know that she is a very special gift. I feel so unworthy and yet so gifted that the Lord would entrust this child to my care.

Well, I am probably off track here, just wanted to comment on what you said as it really hit home. Thank you

 

[jmcrae]

jmcrae, I love what you say here! I think of this often as I am caring for my severely disabled 14yr. old daughter. I look forward to seeing her in Heaven and hope that she will lovingly greet me and tell me I did a good job taking care of her.

I feel certain of it.

There are times I feel overburdened and even a little resentful because I know there are things I can’t do and freedoms I don’t have because of her needs from me. But then I look at her and she is sooo innocent and totally dependent on me and I know that she is a very special gift. I feel so unworthy and yet so gifted that the Lord would entrust this child to my care.

It is certainly a calling from God, isn’t it? I suppose that all who are called by God in a special way feel a certain amount of restriction - it seems as though it would be so much better to be “normal” - whatever that may be - but it’s not all of what it’s cracked up to be, and there are so many “normal” people out there looking for what you already have - purpose and meaning in life.

 

[concerned2]

True, and that’s a good point.

Still, the caregiver also needs to have it in the back of his or her mind, “This person will one day hold me accountable for how I treat her.”

JMCrae
I think we’re on the same side but why wait for judgement day. Life for profoundly disabled folk and their families could be enormously improved if each of us chose to give some “hands on or out-of-pocket financial help, here and now” and then perhaps families like Ashley’s wouldn’t feel so isolated and pushed to make compromise-decisions based on the best interests of their child and quite forseeable future problems.

Michelle’s paid-caregiver of 15 years and I had quite a giggle over the part quoted above. Depending on the drugs she is taking, she can have a very short fuse. She has only one hand that works and despite our best efforts to keep them otherwise, very sharp nails. Even with our good reaction times, we both bear permanent scars on our forearms and the backs of our hands from skin tears where she drew blood. We’re just waiting for the day when we can hold her accountable!!!

Fortunately, the current drugs don’t cause quite so much pain sensitivity.

 

[jmcrae]

JMCrae
I think we’re on the same side but why wait for judgement day. Life for profoundly disabled folk and their families could be enormously improved if each of us chose to give some “hands on or out-of-pocket financial help, here and now” and then perhaps families like Ashley’s wouldn’t feel so isolated and pushed to make compromise-decisions based on the best interests of their child and quite forseeable future problems.

Yes, and there is so much help, if people would only ask and look. People don’t have to go it alone - they are not required to be such tough strong lone rangers, if they don’t want to be, or if it is just beyond their reach to do so.

Michelle’s paid-caregiver of 15 years and I had quite a giggle over the part quoted above. Depending on the drugs she is taking, she can have a very short fuse. She has only one hand that works and despite our best efforts to keep them otherwise, very sharp nails. Even with our good reaction times, we both bear permanent scars on our forearms and the backs of our hands from skin tears where she drew blood.

Medals of honour, indeed.

We’re just waiting for the day when we can hold her accountable!!!

Fortunately, the current drugs don’t cause quite so much pain sensitivity.

And things are getting better all the time. The more we all care, the more will be done - but “making the problem go away” through mutilation won’t ultimately lead to a cure, I don’t think.

 

[concerned2]

Yes, and there is so much help, if people would only ask and look. People don’t have to go it alone - they are not required to be such tough strong lone rangers, if they don’t want to be, or if it is just beyond their reach to do so.

 

[concerned2]

jmcrae - ]Yes, and there is so much help, if people would only ask and look. People don’t have to go it alone - they are not required to be such tough strong lone rangers, if they don’t want to be, or if it is just beyond their reach to do so.

Hi there. Just thought you might like to encourage folk with “pillow kids” , technically known as “profoundly multiply handicapped, Extended Health Care Bed Elligible, Level 3” and sometimes “medically fragile” in BC, by listing the help that is available to families wishing to raise their child within their family and not be "tough strong lone rangers’. Perhaps, you could even supplement the “services list” with an evaluation by parents’ of the contribution those services make toward family integrity. Knowing about support readily available to them might discourage other parents from taking the drastic route Ashley’s parents took.

If anyone is interested, I could certainly outline what is available to this class if/when they reach adulthood (few do) for any family wishing to continue with them as an integral member.