September 22, 2010

I can ramble.

Equal rights, what is that? Certainly not "sameness", because we all have different needs, some more eclectic than others. Equal rights = equal standing? Some kind of law of averages? I don't believe in this, this is to outrageously deny our differences in not only intent but certainly ability. For my son to be made average would require an army of workers, medical staff, therapists, assistants, teachers, a budget of a million dollars. To raise up Segev to the level that he would be able to interact with society without the need for me to be there for him 1440 minutes per day, would require the assistance of that knowledgeable and well trained and patient army and enough technology to bankrupt a small country. 

What is it that I want for my children, healthy, normal and sick and decrepit, alike? I don't want them to be at a disadvantage in life. I don't want them to be taken advantage of, treated unfairly. They will be, at some point in their lives, that is quite normal. But I don't believe that they have the right to be treated fairly. You may call me a cynic, but rights are something rather ephemeral in society. There is a long history by the way, of certain people appearing to have more rights than others, although occasionally that is a matter of confusion over initiative, I believe. 

I was standing in a long line at the drugstore with only one cashier working. One woman came out of the middle of the line and told the cashier that there was a need for another till to be opened. Promptly another employee came and the woman who had asked for this immediately stood as first in line there. My immediate reaction, with my proper Calvinistic Dutch genes, was to think, "such nerve! How dare she, others have been waiting much longer". And be certain that there was more than one woman who verbally lambasted her for jumping the queue. But before I had my turn I had already changed my mind, looked at her in admiration and thought, "lucky devil, her husband. Now here's a woman who knows how to take care of things!" Her answer still rings in my head, "I'm the one who asked for the till to be opened therefore it is my stake to be first in the new line."

So Segev can never be of equal standing in society? Unless a resurrected Isaac Asimov, acting as God, creates some fantastic world for my son, Segev will not communicate and cannot contribute to society the way average people do. Thus, everything that is done for Segev, everything that I want for Segev, must be tempered with the knowledge that my list of priorities will never match society's priorities. Exceptions, in society, similar to traffic on the highway, are tolerated insofar as they can be absorbed back into the whole. 

Traffic works because there is cohesive movement of the masses. It also does not flow because of rules, laws, regulations and the masterful training and abilities of its drivers. It flows 99.9% of the time because small adjustments are made and anomalies are absorbed into the mainstream. We have the theoretical framework to guide us but if we were to keep proper distance at all times, were always to wait to be allowed to lane change, never accelerated to make a light nor stop abruptly or any of the thousand deviations from theoretical traffic perfection that we do every day, traffic would grind to a halt. 
Now put a whirling dervish into traffic. Taking care of a severely disabled and chronically ill child seems to be too much for the system to absorb; he is much too dynamic, the rules change abruptly, medications go into the trash to be replaced by others. Treatment modalities are tried and discarded or ended for lack of funding. How much does that treatment actually help? How much can it actually contribute to your child's happiness? Or comfort? What about how much it can contribute to his actual health?  Adjustments in a kind of macabre dance are constantly being made. The moment you believe you have balance, things seems to swirl out of control. You have no rules to cling to and your "traffic cop", your physician, simply cannot keep up with the complexity. 

Even to quantify achievements in such a child borders on the impossible. Don't forget that I am not speaking of mild health issues, the child is not physically disabled, he is extremely or absolutely disabled. He is not mentally disabled, he is extremely mentally disabled. He is also chronically ill with severe and sometimes life threatening exacerbations.  As with my Segev, he may be taken care of at home by only one parent, no place existing that can give him the treatment he gets at home. No in-home help, no respite care.

I have the honour of having met, through the net, parents who are in similar or even identical situations to myself. We are into extreme parenting. We are the bungee jumpers of parenting. I wish I could patent my methods of helping Segev, establish protocols and universal concepts of care that address situations like I am in with Segev. The the day to day problems extreme multi complex children face are varied, the nuances of treatment tailored to each individual child, where there is no relenting in the minute to minute treatment. Any slacking, any lapse in judgment is immediately penalized whether we are aware of it or not.  

I do believe in taking initiative, like that woman in the drugstore: how do we put ourselves first in line? We need to create the circumstance for that to happen.

What is it we want? Do we want sympathy, or acknowledgement of our many battles? We want someone to take away our uncertainty, I believe. Are we doing the right thing? For how long will my child make it? Will I get help? Does anybody understand what it takes to "raise" such a child? Am I slowly going insane? Will I get back my health after my child is gone? Will I outlive my child?

Moving towards solutions?
These deep questions can be discussed and argued about, practical solutions though may actually help mitigate some of that need.I look with a sense of irony at a country like Holland, which can easily serve as an organizational model for the caring of disabled children in the community, even though it is also at the forefront of ethical debates about euthanizing disabled children. Nevertheless it is that model which I believe should be emulated as a starting point for the best care. 

Some general thoughts on the care model: 

An improvement that I see necessary in order to integrate seamlessly with treatment and research into ailments (such as seizures) is that especially the daycare facilities would serve as a medical hub to collect observations and treatment reports that would be fed into a database system that included questionnaires filled in by parents on a weekly or monthly basis. 
There are so many elements to caring for severe and multi complex handicapped children, especially since most are also chronically ill.
The degree to which a parent is also the main caregiver should necessarily be taken into account since their state of mind and physical health is essential for properly caring for their child.
In the mean time on the Facebook page "extreme multi complex handicapped children" I will continue trying to encourage dialogue to discuss practical issues, certain ideas, particular experiences that can be exchanged so that we can, as the main caregivers, increase the quality of treatment for our kids.  

1 comment:

  1. I am incredibly and deeply moved by your post and your blog. Via your comment at mine I have finally found a true companion on my journey! Eric, I am looking forward to the growth of our friendship and correspondence! Thanks for making this happen.