Saturday, September 11, 2010

September Happiness Project-Family

This post is being written as I watch the reading of the names of the fallen on 9/11. I leave the television on all day while the names are read. Why? Because we all must remember that that day was not an abstraction but that actual living breathing human beings perished because of hate that day. You may ask not knowing any of those that perished on that day, what does their passing mean to me? It means something because we are all part of the human family. When something happens to a part of our family we are required to help. It is why when hurricanes or floods happen half-way around the globe it is our instinct to reach out as best we can and offer what support we can. It is in our blood. It is how we are raised. So I sit and remember those of my American family that perished on 9/11. It stays on from the first name read until the last. Even if we are not in the room to watch, the names reverberate through the house. It is the least that we, who are alive, can do.

I know that this is a rather odd segway into our discussion of September’s Happiness Project, but seeing that September’s word is family, I began to think just what is family and how far does it extend? Family I suppose comes in many forms in today’s world. We recognize that people are allowed to love each other beyond the traditional view of family and that people become family because they share a unique bond and a unique caring for one another. Family is no longer simply the people you grew up with, or the distant cousin you see every ten years at a family reunion. Family is the therapist who comes in snow and sleet to help your child learn to speak, or the teacher who brainstorms with you on how to get your child to read. Perhaps family is the wrong word; perhaps “village” is a better word to describe those in our lives who care. But with either word, they connote the people you can turn to when there is trouble and people you can turn to when you have some joy.

Being parents of special needs children we are always faced with the issue of family. Invariably I hear from those whose blood family doesn’t understand the issues that their children face. Or those blood relatives have no idea nor care to have an idea about what autism or any disability that their children face happens to involve. It is perhaps the cruelest cut of all. At times even worse than that day you received the name of the disability that was causing your children so much difficulty. You see, we do know, in the back of our hearts and minds that there is something not the way it is supposed to be with our children. By the time they are diagnosed we are sometimes relieved, well at least I was, that we have a name for everything that is happening and it gives us something to work with.

But the thing that you did not expect, the thing that cuts you to the quick is when family who you helped with their issues, your family that you grew up with, shared a room and late night secrets just doesn’t care and doesn’t want to care. That those blood relatives that you have helped overcome some of the most troubling times in their lives turn on you and has no use for you anymore because it means that your child and not they, are now going to be the center of attention. It is disheartening to find out that those who you were told your entire life, that these were the people you can count on, are the exact persons that you cannot count on. So what does this mean for us? What do we do? What this means for us is that we go out and create a new family, one that cares about what is happening in our worlds. We redefine family. We redefine who is important in our lives. And finally we end up in many ways redefining ourselves.

But first we need to allow ourselves to get over the hurt of the abandonment by those who were supposed to be there for us. We need to allow ourselves to mourn the passing of what we thought was family. It is interesting that we face this exact issue when we are also told that it is ok to mourn the loss of the child we thought we were going to have. This according to psychologists is a normal event. We need to mourn what we thought our lives were going to be and what we thought was going to be our children’s path.

I have seen parents become despondent over the fact that their children have a slight speech delay thinking that their children’s future was over. I know to those of us whose children truly have a myriad of real issues, whether development or life threatening medical conditions, this seems insane. But as I explained to the specialists who were angry at this one particular mother, unless you live in the special needs world you have no idea what people face. To this one particular woman her child could not keep up with her peers and her thoughts raced as to what would be for her child. You cannot always blame people for their reactions to things, you just sometimes try to understand why they react the way they do.

I actually tried that with those blood relatives who abandoned us. I tried to understand for a very long time why they thought or felt the way they did. If it was just a fear of not understanding and a fear of not being able to deal with the autism I think I could have forgiven that. But it was the true not caring and the true not wanting to understand, not a fear of understanding that drove me from my blood relatives. It wasn’t even the relative who had ideas for you, albeit so very wrong, including it being just bad parenting. In an odd way they at least seem to care, even condescendingly, what is happening, even though they have no idea what they are talking about. Of course, this doesn’t include the relative who keeps telling you to spank your child and that will fix your child. Ignorance and stupidity really are no excuse, but at least you can understand it. Just not giving a damn well, that is a totally different rejection.

The truth is your child and you deserve respect. No one has a right to be mean to your children no matter who they are. When anyone is mean to a child, never mind one they know is disabled or ill, then they are not only not family, they are removed from the definition of human being in my book completely. They cease to be a part of your life, and are not worth any effort on your part. I think the hardest part when this happens is that you also need to deal with the fact that there are those out there who are not you and you cannot expect them to be. There were so many people that I had been overjoyed when things were good and helpful when things were bad, but when it was my turn, their backs was what I saw. The trick of course, is to make sure that in your disappointment, your sense of self does not change. It is important that you do not change who you are just because those who were supposed to be there for you, were not what you expected. Disappointment in the human condition can be hard at times, but it does not mean you have to change who you are.

So we mourn who our children are not going to be at the same time that we mourn the loss of those that were supposed to be our family. We deal with a lot at the very beginning of our journey with our children. We just never thought that while we were trying to build a world in which our children could exist, we would also have to rebuild our definition of family.

But rebuild it we can and we do. We learn that family is the person who sits with your child and holds them while they meltdown in school. We learn that family is the person who runs to the market for you because you are too overwhelmed to go out for that quart of milk. We learn that family is the person who sits with you over a cup of coffee and listens to you bitch and complain how alone you feel even with them sitting there. We learn that family is the parents of other special needs kids who accept you and your child without reservation.

We learn that family is some stranger on twitter or facebook that you have never met face-to-face, but understands you without ever having met you. Together we offer advice and give hugs (albeit virtual) when things gets tough. Together we exchange information, ideas, and hopes for the future. Together we understand what it means to not be able to go on a “date” with your spouse or that “date” means the respite care giver came over and you and hubby sit in the basement for an hour of peace or in fact, just fall asleep together because you have found that rare moment of quiet. Together we understand without condemnation what it means to be severely in debt because of therapies. Together we understand what it means to be overjoyed that your child reaches and surpasses a milestone that an NT child reached years before. Together we understand what it means that there may not be a solution to a problem and that we just need to deal with life as it is at present, but that we can hold out hope beyond hope for a better future to come. But most of all, together we do not condemn, together we do not judge, together we are just there, as best we can be, if one of us needs each other.

Family has many meanings in today’s world. There are many configurations of family and how these families look. I say embrace your new families. We all have a right to belong among those that understand us.

Until next time,

Glad for those that are part of my new found family,


OK one more 9/11 must see video: