Malicious Whispers and Dangerous Trends - Our kids

[Donna Thomson]

Hi Everyone, Here's my latest post on something I've been noticing over the past year or so...

http://www.donnathomson.com/2012/07/...us-trends.html

[andromeda31]

Great topic Donna! I agree with the posted comment on the blog about physical vs cognitive disabilities. I feel that has been our experience too, some outright to my face (the neonatologist who said,"I hope you aren't expecting an olympic athlete" and then went on with additional bleak outlook.) and our experience during Caitlin's hospitalization in 2009 where I heard thru the grapevine a lot of nasty stuff said behind our back. (a friend of my husband's family is on staff there and happened to be in a meeting then that was about Caitlin). I actually got shingles after one of those long hospital stays from all the stress. That really sucked. In fact, I know I am stressing now about going to the hospital next week with Caitlin for her VEEG, 2 days minimum stay. Last year it took 3 days so I will be packing for that much to be safe. I love to scrapbook and bought myself digital scrapbook software for Christmas this past year....just last week at my friend that I scrap with we were talking about upcoming hospitalization and she said I should make a book to bring or something. That is why I rushed that book that I made with the new photos I just got last night. Too bad it won't arrive until after her stay though. I think it would be nice to have photos of her not in the hospital setting to show how she is at home in 'real life' to them...at least they are on my computer that I always bring with me. I also am planning to make a photo book of her medical history that I can bring with me to these types of trips. I think that will be much more better for them to see than just words on her offcial chart. They always seem to assign a resident to go over history every time we are inpatient.

One thing related to this that has been on my mind....there is a local boy with a rare skin disease. Last year his parents took him to an out of state hospital for an experimental stem cell transplant. He has state MA, at first MA said no, they appealed and lost. Then they went to the media and then MA reversed their decision and the boy got the transplant....which cost 500K. He did better but now is back in the hospital and requires a second experimental transplant. I struggle a bit with this as also last year Caitlin's PT got cut in half which means that what she does get is completely paid for by our private insurance and state MA pays none. (I did appeal this in court also and lost). I know a big part of it is due to the republican budget cutting but it is hard for me to not feel like why one person gets more of the MA "pie" than my child. I just wonder how it is decided how to allocate the funds available...he is not cognitively delayed and Caitlin very much is. I dare not post any of this feeling on fb as I would be crucified. Rightly so?

Lisa O.

[Donna Thomson]

Hi Lisa, Well, first of all, good luck at the hospital next week!!!! I think your observations are absolutely valid and I believe it's vital to have this discussion publicly. Because I think the absolutely worst thing is to have meetings behind closed doors about whether our children should have treatments or even live or die. And sometimes the ethics on our kids drift and we don't notice till a few really awful cases come to light and we realize that maybe we parents are the only people who care. That's my worry. Physical disabilities and diseases, especially in children get the most public funding. The elderly and those with cognitive disabilities are far behind and addictions fall off the charts. There is definitely a conception of human worth behind these funding decisions. And I am not saying that everyone should have endless funds for every new treatment, of course not. But I am saying, let's be honest about what drives our decision making so that at least we know and we can fight a battle when necessary and we know who and what we're fighting against. I would welcome your thoughts on the child neuro facebook page and I think others would too, but that's just me. I am not sure about the divisiveness in US politics right now - you know better about that. But I do find it very strange that anyone with a child with disabilities would not want better public funding for our kids health services, regardless of their political stripes. I will be thinking of you guys next week. Good luck!!!

[Earth Mother 2 Angels]

((((((Donna))))))

Huge topic and extremely relevant to today's economic and political climates.

I read your blog, as well as Catherine Frazee's blog, and I watched (with Jim) the video of "Taking Mercy." I only saw the first part of "Taking Mercy," about the mother of a son and daughter in their 40's, who are diagnosed with Sanfilippo syndrome and have been institutionalized since they were 7 and 8 years old.

Our computer conked out (we need a new one), as the story of Robert Lattimer, who murdered his disabled daughter 19 years ago, was beginning.

The mother said, “The saying, ‘walk in another man’s moccasins’? Don’t judge. Unless you’ve been there, don’t judge. This is no life. For anyone.”

Well, I have not walked in her moccasins, but I have walked a million miles in a similar pair. I think it's reasonable to say that I've "been there." But I am not judging her.

I chose a different path than this mother, in that I cared for my sons at home, as a single mother from their ages of 8 to 22 years. Maybe she believed the futility speech, the "put them away and live your life" speech that most mothers heard more than once 35 years ago (and since). Maybe she'd been given a life span for her children, and she never expected them to outlive that specific age. I was given those prognostications too.

When the mother goes to the facility to see her children, the narrator states that this is a "unique" day for the children, because she has come to visit.

What I don't know is whether this mom visits her kids regularly and has for the 2 decades of their institutionalization. Does she take them to the park, to museums, to concerts? Does she read to them, listen to music with them, watch TV with them, root for a sports team with them?

Does she treat them as humans or as the vegetables she says she believes they are?

What other medical issues do her children have beyond Gtube feeding? Do they have seizures? Do they get pneumonia or infections frequently? Are they often hospitalized with life-threatening conditions?

I agree with this mom in that no one should ever have to live as her children do ~ in an institutional setting, because they have developmental disabilities. In the U.S., the Olmstead Act ensures that persons with DD are able to live within the community to the greatest possible extent.

But within facilities, efforts can be made to ensure a home-like environment, therapies, and loving care.

My impression is that, because her children depend upon Gtubes for nutrition, she feels that they are on "life support."

I feel that is an inflated and artificial use of the term. Life support is when a machine breathes for you.

It could be argued that without food, we die. True.

But it can also be argued that without peeing, we die, so indwelling catheters are life support. And that if we stop having bowel movements, we die, so colostomies are life support. Without insulin, diabetics will die, so insulin is life support. Blood transfusions? Life support. Pacemakers? Life Support. Et cetera.

If a person is in an end-of-life stage, where organs are failing, and death is inevitable from the disease process, then the removal of nutrition can be a blessing to assist in the loved one's expected passing. Just as it is so with removing the ventilator.

But what if the body is relatively healthy, and the person is not actively dying? Is it right to decide that the person's life is no longer viable and to stop feeding that person through the Gtube?

And what if that person is cognitively impaired and cannot express his/her wishes?

I'm reminded of the woman, who I met at the hospital chapel this last visit, who cried in my arms, "I can't kill her!" referring to her 92 year old mother in ICU. When I saw this tiny, frail, fragile lady in that gigantic hospital bed, a part of me wished for her release, as she had lived a long and happy life. But her distraught daughter simply could not let her mother go.

And, I'm sure that I speak for many grieving parents, when I say that we are never ready to let our children go. We cling on to the very end until there is no hope remaining. And then we cling a little longer.

So, parents, who are wishing for their disabled children to die, or who murder them to "end the child's suffering" are the antithesis of everything that I've done for my children, and everything every other parent, whom I've known through the years, of an SN child has done for their children.

But, I am not judging these parents. I just don't understand their thinking or approach to their children's conditions and possibilities.

Perhaps they were influenced by the devaluation of their children by medical professionals, governmental agencies, or society. Perhaps they believed and accepted that their children's lives are/were worthless, because they were less than perfect. From what I gathered from "Taking Mercy," the general public agreed that Lattimer's murder of his daughter was a "mercy killing."

How do we combat that perception?

I've been working on it for 42 years. I still don't have an answer. Sadly.

Love & Light,

Rose

[Donna Thomson]

Dearest Rose, I am so grateful as always for your thoughtful and wise reflections. I DO judge the mother of the two young adult children on "Taking Mercy" though, and I judge Robert Latimer as well. I believe that we must judge them because if we don't, our own children will be at risk without our constant protection and vigilance. The groundswell of support for Robert Latimer in this country was and continues to be very frightening. The rhetoric of "it's OK for a loving father to send his daughter to our Loving Father above" was awful. The reality was that he put Tracy in the front of his pickup truck while the rest of the family was at church and he attached the exhaust pipe to the interior of the cab. That's murder, plain and simple and I am very happy that our supreme court agreed. But you know, the budget constraints of public funds in these times of austerity give folks lots of other reasons to justify doing away with "on compassionate grounds" those who consume the most health and social care dollars. In Canada, we need a public discussion on euthanasia, palliative care and its limits as well as how we support our most vulnerable citizens with extreme health and social care needs. Individuals with severe developmental disabilities are particularly at risk in the the current climate, because many (including some bioethicists) would consider them less than human. I think Global TV has much to answer for in their airing of "Taking Mercy" - it pandered to all those attitudes I am most worried about. Anyway, I often cite you Rose and quote you in my efforts to influence thinking about the worth of our kids and why they are great contributors to their families, their communities and their countries. We'll keep our flags flying for our beautiful boys. xoDonna

[Earth Mother 2 Angels]

((((((Donna))))))

Perhaps I should have clarified ~ without more information, I reserved judgment.

Now that you've provided me with some more information, I can state unequivocally that I agree with you that Robert Lattimer murdered his daughter in a premeditated manner. His punishment certainly does not fit that crime, unless his sentence is similar to that of any other murderer. What if he had killed his wife that way? Or a child, who didn't have a disabling condition? Or anyone, for that matter? What would his sentence be then?

The mother complained that medical technology and advances had prolonged her children's lives, and that without those interventions, her children would have perished long ago. It's very difficult for me to hear a Mother say this.

I give thanks every day for every one of Jon's life-saving appliances. I give thanks for every single moment I have with him on Earth. I can't imagine cursing the very things that are giving me that blessing.

That, along with the "unique" aspect of her visiting her children, and her body language when she was with them, prompted me to go where I do not like to go ~ judging her.

Not everyone is cut out to be the parent of a special needs child, or a child with a serious, long-term illness. So, I always try to cut parents some slack, because I am not them, and I'm not walking in their shoes, exactly.

Jim and I are often told at the hospital how different we are, in that most people with SN do not live at home with 24 hour parent care. And most people, who are Jon's age are in a facility, as they require nursing care, and their parents are either too elderly to provide it (or are unable to or never have) or are dead. I do know a few parents, who are still providing in home care to their SN adult child, and more would do so, if the support system were stronger. Economics, budget cuts, etc. always hit our programs first.

Coming from a place of devotion to my children for as long as they or I live, and as a Mother, who is grieving one son and pre-grieving another, I cannot wrap my head around this mother's desire to end her children's lives by denying them food. FOOD! The STAFF of LIFE! The very reason we have breasts ~ our purpose as mothers is to nurture and feed our children.

Even at the end of Michael's life, we removed the ventilator, but I insisted that he continue to receive nutrition. I couldn't stop feeding my baby! That seemed so wrong to me. But I now I understand that it truly is better for the dying patient in some ways. And I emphasize DYING patient.

Naturally, it is difficult for me to comprehend her desire to end her children's lives, without standing in judgment of her, because I could not do that to my children.

This is why I posed those questions in my initial response. What else do these two adult children have going on in their lives medically causing them misery and suffering? Are they in pain? Nothing beyond their DD and Gtubes was offered as a reason for ending their lives.

"This is no life. For anyone." She declared.

So I must ask: who is responsible for the quality of life that would be suitable for them? Her, as their mother? The government and taxpayers, as their source of financial support? The institution, where they reside? The community, in which they reside? The people of the world, on this planet? All of the above?

Being shut away in a facility and ignored and neglected absolutely is "no life. For anyone."

It isn't their fault that their quality of life is poor. The blame squarely rests upon those, who are responsible for ensuring that their lives have the best possible quality for them.

Where are the videos of families, who have stayed together, persevered through crises, and are ensuring that their children are receiving top notch care and are showered with love? Like your family, my family, all of our CN families?

And why are bioethicists determining the fate of our children or the fate of anyone? Who are these people to tell us who is worthy of living and who should die? They can have all of the Initials after their names they can stuff on a resume, but they are not LIVING IT. They theorize without real-life, hands on experience. Their proclamations do not factor in human frailties, foibles, emotions, spiritual needs, psychological effects, or anything relevant to a real-life experience. Why do we listen to these people? Why do we even need these people?

I do fly my boys' flags proudly and loudly, and I pray for changes. But I've been at this for a long time, and I do not see the changes we need. We need a champion for our causes. Someone with gravitas and stature. But I don't see anyone of that caliber running to the forefront to bring these issues into the consciousness of society.

And, when others are up to their eyeballs in problems with unemployment or job loss, or losing their homes, or not being able to afford health insurance, or just the daily grind, they lose interest in our issues mighty fast. They want tax dollars to help them. It's everyone for themselves.

We can and must keep pressure on our legislators, both state and federal, to proffer laws protecting the rights of persons who are vulnerable.

And we can remain vigilant, visible and vocal.

We will prevail.

Love & Light,

Rose

[Donna Thomson]

You are right right right Robert Latimer and about the woman profiled on the Global TV special. What is disturbing about her case, as you've pointed out Rose, is that she believes a life with disability is not worth living period. I would encourage her to visit Jean Vanier's L'Arche communities where anyone can go and live in the company of people with disabilities. Writers, engineers, just anyone can go to any of the L'Arche communities and the only responsibility they have is to give a person with disability a bath once a week. You have to TOUCH imperfection. Of course hanging out and dining together is a given. It appears that this woman does not know her children, I mean really know. And looking at them degenerate if she doesn't know them is understandably terribly painful, but it is HER pain. Rose, you articulate so well all the principles of excellent, loving palliative care. I'm with you, if there is no pain or distress (because that's a different story), a good life can definitely be had. Not least because of the inability to do things other than be intimate in conversation with someone you love. Latimer got the minimum sentence of ten years, there were a number of appeals and two supreme court decisions and he eventually got the ten years with no chance of parole. But a lot of people (hundreds of thousands) signed petitions in support of Latimer not having to serve jail time - they saw him as a good father and unjustly treated by the courts simply for putting his daughter Tracy out of pain. (She had pain similar to Nick's for hip dislocation which was then treated by surgery and they were proposing spinal rods for her next - Latimer couldn't deal with the surgeries and he referred to a G-tube as 'cutting a feeding tube into my daughter'). So, he was completely unable to deal with the medical side of what doctors were promoting for Tracy (which is all run of the mill for us). That's a subject for tomorrow that we can all figure out here, right ;) xox

[Mangosmom]

This may seem harsh or hateful, but I see their actions as lazy and selfish. They didn't put their children first. They didn't want to have to keep dealing with the "problems". I have no patience for anyone who thinks they have any say on whether someone elses life is considered meaningful or that it has any quality. Just as Paul is dealing with the doctors stating Grant has no quality of life. No one should have the right to say what is a good quality or not for someone else. It may not be THEIR idea of a good life, but I guarantee you, Amanda had a wonderful quality of life and had a great life in spite of her disablilities and her physical limits. Turning off her life support was the hardest decision I have ever had to make and ever will. And if there had been any other choice, I would have chosen another choice every time.

Unfortunately, I see it only getting worse.

[Earth Mother 2 Angels]

((((((Lisa))))))

I think that you have every reason to question the allocation of MA funds.

Why did the boy's parents win their appeal? Can you research that case and delve into the findings? I've always found that being an effective advocate requires detective work and really familiarizing myself with the agency, its policies, its previous decisions, etc. The more you know, the less they can get away with in being vague or ambiguous toward you. The more you know, the better and stronger your arguments are against them.

If you can demonstrate that MA showed this child preferential treatment, you can nail them on discrimination. Any child or person, who is denied services on the basis of their disability, is a victim of discrimination. And it happens every day everywhere.

I can think of one argument given by our state to parents of minor children with disabilities, "he's your responsibility, normal or otherwise, until he is 18." The consideration must be given to the extraordinary needs of a child with SN, which go far beyond those of a non-SN child. Parents can afford the usual, customary general needs of their SN child, but those extra needs, the ones that cause us to use the euphemism, "Special," are the expensive ones, which we can't afford.

The boy's parents were smart to take their story to the media. They drummed up sympathy among the community, while putting pressure on MA's image.

We did this in the 1980's on large scale issues, such as unsafe school bus transportation in our county and state budget cuts to our IHSS program. Our county knew our family well during that period, as our story appeared in local and major newspapers and local TV news. It is the best way to draw attention to inequities and crises affecting our children.

You have a right to and you should know why the boy's parents won their appeal and you didn't win your appeal. What is the difference between his and Caitlin's cases?

And the cut in PT affects more children than Caitlin, I would assume. So, why are they being denied a needed service? How does MA justify giving one child $500k plus whatever his current treatment is costing, and denying your daughter and however many other children money for PT? That is a valid question.

In a perfect world, everyone would get everything that they need. But we are in anything but a perfect world, so when corners are cut, everyone should feel a little slice off of their corner.

Love & Light,

Rose