Thursday, September 5, 2013

Stop Saying You did Everything You Could

The following post is admitting something I have never talked about before.....

Guess what, I am going to go the non-politically correct route. I know you are shocked, shocked you say....Once again we read of a tragedy involving a parent trying to murder their autistic offspring. I do not know this Michigan family. I had only heard of them this morning. This sadly, though, is merely the last in a string of desperate parents who feel they have no out but to murder their children. And no, I am not saying "poor parent" as opposed to realizing that the true victim in these situations is the autistic child. I am NOT making any kind of excuses for the parents whatsoever. I am indicting those around the family....

Over the years I have had limited experience with families in crisis as a volunteer advocate in my area. There is one thing that these people have in common. A refusal to recognize and accept the reality of the crisis. And this does not just mean the parents. Sometimes it is the parent that is in crisis afterall. It could be friends, grandparents, aunts, uncles and even coworkers who refuse to see the obvious. It is this circle of friends,  the distinct group of supportive people, that refuse to see and deal with what is right before them.

I am very tired of hearing how everyone around the effected person did all that they could. Sorry, but no you did not. You did not do everything you could if these persons in crisis succeeded in killing themselves or harming another. We can always fool ourselves into believing that we did everything we could. That we were there the best way we knew how, or that somewhere in the recesses of our minds there was nothing else we could do.

Many try to claim privacy laws. Or the fact that their adult children wouldn't get help and they couldn't force them to get help. But did these people go to a lawyer and talk about how to fight the courts? Did these people go so deeply into debt that you couldn't possibly ever extricate yourself to help your child or that family member? Did you ever review how you ignored the issues your child had growing up and chalked everything up to adolescence and today's culture wars?

A person does not "snap." That is a movie hook to enhance drama. A person doesn't suddenly become mentally ill. Yes circumstances and traumas lead to mental illness in adulthood. PTSD is one mental health issue that comes to mind. In truth, there is help for that too. But for most, their problems start young and they progressively get worse. It is up to parents to figure out what their child needs. Schools are not going to butt in if the child is producing passing grades and is not a behavioral problem. They are not going to put themselves out on a limb. So don't take it as a good sign that a school district refuses to do anything for your child.

Years ago when MrGS was little our pediatrician, who by the way, is a developmental pediatrician, didn't see his autism. As he got older, some nursery schools did see the autism, and they did try to tell us. I refused to see it because they went about it in the wrong way. I felt attacked instead of feeling that they wanted to help. Friends of my in-laws saw the autism, but I refused to listen. The grandparents didn't want to hear it and backed me up. I did not want to see what was right in front of me and it was my child who had to go on for years without the help he needed until he reached a breaking point that he should never have had to endure. And yes I blame myself. And I should.

Luckily I learned my lesson with CM2. I saw the autism. Others, including family and the new pediatrician, said he was just copying his big brother (lining up of toys, obsessive behavior). He didn't talk because he was a second child, etc, etc, etc. But I knew better. This time I got him help long before he fell apart. No, its not been smooth sailing by any means, but he received the help he needed at a much earlier age because I learned from my mistake. I remembered the detriment of ignoring what was right in front of me and it was a lesson well learned.

Also at one point, unfortunately, we had a terrible problem with the new school district. The special ed teacher along with the new vice principal of the elementary school were trying to undesignate CM2 as a 2nd grader. They wanted to make themselves out to be heroes to say they "cured" him of any issues. I knew better what was to come in school, having an older child with autism, and I knew that I had a huge fight on my hands. But what it did, was send me into a tailspin.

After the trauma that we had gone through to get help for MrGS, after the cruelty and evil, horrible people that we had endured in the NYC pubic schools and the Jewish pre-school world, I had hoped that we had found an oasis of calm for our family. It was a psychic shock that the school district I was relying on to help my children, the one that had so helped MrGS, was in fact trying to do damage to my younger son. It sent me to my bed. One morning I refused to get up. I had no where to go. What was I to do if this district didn't help CM2?

Hubby didn't yell at me. He didn't cajole me. He didn't bribe me. He immediately called the psychologist with whom we had been working. He knew that I was in crisis and I needed help and support. Yes, I got the help I needed. I spoke to the doctor and got out of bed. I received the medical help I needed and created a support system made up of psychiatric, medical and special education personnel. So not only do the boys have a village, but I did too for awhile.

Hubby and I, as lawyers, also sat together and put a case forward that basically shoved a red-hot-poker up that 2nd grade "special ed teacher" and vice principal's respective asses. Besides severe IEP violations, there was an ignorance about his testing and the requirements to come. We put together a seven page outline of a lawsuit that left the district director quite annoyed at her personnel. I saw them all get together in a huge meeting by the end of the week. CM2 got every support that I wanted for him for the following year and then some.

Honestly, winning that battle, did alot to get me past my depression and trauma. Now we have been through alot of periods of being and feeling overwhelmed through the years, most of which I have detailed on these pages. Most of which was dealing with incompetent school personnel too. But I can honestly say that I have never ever felt so alone as when we were fighting with the school district about helping CM2.  But at least I had hubby for support and we fought the fight together. He helped calmly, rationally and with his usual finesse. We were also lucky that the district special education director understood the issues, especially the legal issues, and that we had the law on our side. We were also lucky that she didn't want to support her personnel, right or wrong, to the point of going to court. The children's needs were her concern, not the people that worked under her.

The point is that the people around you need to be aware of what is going on. They need to see what is right in front of them. If I had listened about MRGS in the first place and not heard what I only wanted to hear; if I had followed my instinct that something really was wrong before he fell apart; if I had not been so insulted by the way the nursery schools handled MrGS; he would have been helped earlier (And no, don't tell me its OK, since he is doing splendidly now, because you know what its not. For your child you have to buck the tide and grow up.) I luckily remembered, and was independent enough,  to get CM2 the help he needed when he needed it. And the hubby saw that I needed help and insisted I get the support I required before I tailspinned totally out of control.

Funny its been 13 years since I began to fall apart that one morning and was pulled back from the brink. But I still remember how it felt. I still remember the hopelessness and the feeling of isolation. I still remember the fear and the feeling that I simply could not fight anymore. I still remember the desire to avoid anymore trauma in fighting the world. But  I also remember how with support and love I came back to myself and saw that there was a future for everyone. Lucky for me that the hubby loved me enough to see the truth of the situation.

So when I see someone who goes into that dark tunnel and doesn't come out,  and that there are those  IRL who say they did all that they could...well sorry, no you did not. Am I adding to your guilt by saying this? Too bad. Am I being judgmental? Well,  I've been there, on both sides of the equation and as an advocate as well. I don't think that people take the easy way out, it's just that sometimes the reality is so painful and so hard to deal with that it is easier to make up excuses why you didn't help or why you didn't see what was right in front of you. Sadly that doesn't help those who are in crisis and it doesn't eliminate the responsibility that comes with being a friend, relative and part of humankind.



By the way, you could also add "to refusing to see what was in front you,"  what happened last year with my father. He was diagnosed incorrectly with TB as opposed to lung cancer. We were all really happy that it wasn't cancer because we thought TB to be a curable disease at least. We didn't suggest to my parents to go for a second opinion. When the pain started, and with lung cancer there is alot of pain, the doctors even dismissed it as part of the TB. We discussed how he probably was going to get sicker before he got better. But the pain just kept getting worse even as he took all the TB meds. Finally when the CDC called (they apparently follow everyone ever diagnosed with TB) and told him he was incorrectly diagnosed we just chalked it up to a different form of lung infection. I tried to get him to go to the doctor earlier than a scheduled appointment, but I did not go to my parents house and force them to the doctor or the hospital. Meanwhile all his doctors happened to be on summer vacation at the time and no one bothered to call him back even after he went for a CT scan of his lungs (It apparently showed stage 4 lung cancer). His pulmonary doctor's appointment was weeks away.

We don't live anywhere near my parents and visited periodically. We had seen my parents about 6 months before my father died. He looked pretty good at the time of our visit. He had just gone through a hernia operation and was actually quite chipper. (Funny they said there was a cloud on his lungs before the operation, but no doctor followed up on that. We didn't either. But he was using an inhaler alot at the time of our visit and told me he had COPD.) Three months after our visit, was when he was diagnosed with the TB. At the time of diagnosis, it was recommended that no one come visit them as the infection might spread. Infact my father wasn't really allowed to leave the house for several weeks and my mother had to be tested periodically to make certain she had not caught the infection. My parents didn't use facetime or any other kind of video-chat just yet.

But then one day brilliant-computer-sis did get them to go online and my father had changed dramatically. Sis and I even discussed it. How terribly ill he looked. That weekend I had a dream and woke up, called my mother and told her she had to take him to the hospital right away. I was coming down to Florida to help. He died four days later from lung cancer.

Did I do everything I could have for my parents? No I don't think I did. I could tell myself that I did. But I know better and it is something I am going to have to live with. I will have to learn to make peace with that as well. But I think there is a lesson learned here:

Never take the doctor's word for anything. Second opinions are so important even if the diagnosis is something you want to hear. Be realistic. Don't ever settle. Doctors make terrible mistakes. (Just as there were those developmental pediatricians and speech therapists, who didn't see MrGS' autism) While my father would probably not have lived due to the lung cancer, at least he might have been kept more comfortable and not in so much pain. We also might have had the opportunity to have seen him and his grandchildren would have had spent some last moments with him. Yes we were robbed of all of that. Yes I blame the incompetent doctors for everything...the misdiagnosis, the pain they let my father live with, the lost time together as an extended family, but I also blame ourselves for not following through on our instincts and being happy to take their word for everything. Having been involved with the medical community for over twenty years, I should have known better.

Yes guilt is a mighty force to recon with. But it is also a mighty motivator. Just learn from the mistakes of your past and teach others to seek out the right answers. That is the legacy I will pass on from my father's painful death. It's all I can do now for him.