Not to alienate anyone but Segev is Segev

 edited for grammar
There is nothing I wouldn't do to make Segev a healthy average child. But as it is Segev is not healthy and he is quite the opposite of average. As a matter of fact in all of my studies over that last twelve years, discussions with doctors in all fields of medicine and in my many communications with parents and support groups, I have only encountered one other child with Segev's constellation of problems that has survived as long as he has, even surpassing Segev by nearly four years in age.

But there are many children like that, that have a unique set of difficulties which one day will be properly categorized into a syndrome with a name. A syndrome which will firmly place that child on the endangered species list. I mean to say that there are children like Segev, with  different unnamed syndromes who also are at daily risk of succumbing to their degenerative states.

About 70% percent of the children born with Ohtahara syndrome supplemented with multiple system defects die before age three.  Where I live you are eligible for social service assistance and stipends only after the child reaches age three. Hmm, I wonder why? 

The fact is that while parents of handicapped children can stand together and organize themselves, demanding better services, accesss, treatment and financial assistance, parents of extreme multi complex handicapped children (EMCHC) basically have time and energy for this after their child has died. So in the mean time we will be included in the status of "handicapped child", not as EMCHC.  When I look at both adults and children and what qualifies them as being classified 100% disabled and dependant for all daily activities such as feeding and dressing and then I look at my Segev, I say to myself, "this is a child with 500% disability"

Now, I don't expect anything from the government. Really I don't. If they were to give me nothing at all you would not here me complain. Perhaps I'm just stupid that way. But if the government is saying "you have the right for your child to go to school" and "you need and will be given assistance for your handicapped child", then I say well let's go about it in a way that does not make you look retarded in giving this help. 

I would love to go to my parliament and camp out there with Segev, showing the world what's what. The cost would be Segev's health. Followers of this blog of course know that I could never do such a thing with Segev. But what will it take to change their perception and realize that there is a whole world of ways to improve handicapped life that doesn't cost money, it's a question of organization. 

But while respected people like Peter Singer can be a cause de celebre, probably feeling very noble in discussing such a diffiicult subject in such a forthright manner, infuencing policy of the future, I have to fall back on my basic belief that in regards to those severely disabled it is those with the experience which should be tapped for their insight, as a minimal ingredient in the discussion of policy.

 who is wearing the dunce cap, is it me or is it them? 

So let's stop beating around the bush though; our children are marginalized because they are exceptionally handicapped; not only government agencies are at a loss to deal with them, the medical community repeatedly sends parents home with their children, sometimes to die, without the most basic knowledge or foresight. Again and again I have seen this and I believe this is one front that should be addressed and to this end, finding no organized resource out there I started the facebook page which is linked on this blog (you do have to sign in or up though and then request membership).  

While it may be overly ambitious to attempt to organize treatment experiences, practical help, in that forum, I do not see an alternative. Each syndrome and disease, each type of disability has its own website but they do not deal enough with general practical advice that parents need to have, like having a pulse oximeter in the home, monitoring respiration during sleep, suction machine and how best to use it. 

When Segev was last in PICU I had to stand, literally, by his bedside for 17 hours and then catch 2.5 hours sleep because their suction protocol was once or twice a shift! Each and every one of you has a thousand stories like this but if we don't share the information and organize it so many people are left out in the dark. 

The doctor's assume someone else is giving instructions to the parents. If you have a different experience I would love to hear it. Personally I have gone through 11 pediatric neurologists. The best one was the guy who at least admitted (he was the chief pediatric neuro for a major hospital) that he doesn't know how to read an MRI. Another one was excellent, experienced chief neuro, a real listener, with care in his eyes who couldn't prescribe for my son since hospital protocol forbade him interfering with his subordinate who was given the case! 

It goes on endlessly. How about the Professor of Pediatric neurology whom I explained to what the latest major research and results were for VNS implantation and he said, "Where do you get your information from? This is great because later this week I have to give a lecture on VNS to the staff physicians?" WTF?! (That's webspeak for Why To Frown, isn't it?)

I feel like I am living in a dream most of the time with existential experiences like these. My connection to the world is on the net and writing this blog has allowed me to further widen my gaze, coming into contact with so many parents with questions. Do I have the answers? Perhaps a few, but I know that they are out there and waiting to be plucked if we can find the open state of mind that many of us had prior to landing in the quagmire of care that our children demand of us.