Sunday, September 19, 2010

Life May Suck But You are Still a Human Being

Guess what …your life sucks. It sucks. You have no money. Your husband works all the time. You are generally alone with your child. And oh yeah, your child is autistic. Your child rages, has sensory issues, can’t speak and you can’t take them anywhere because you don’t know how they will react or what will set them off. You can’t remember the last time you had a shower that lasted more than 30 seconds, if that long and never mind the idea of a manicure or pedicure. You wear a hairstyle that doesn’t really need care; you just stick your hair up in a pony tail and are off with your day. Make-up, heck if you even forgive yourself some face cream it’s what is on sale at the BJs or Costco and you don’t really know if it does any good. You can’t remember when you even had a cup of coffee in peace and quiet. You can’t remember the last time you bought yourself a new piece of clothing, not a fancy little black dress, but even a new pair of sweatpants. You don’t go on vacation. You don’t go out to lunch. You don’t even send your child to school because they won’t support your child properly so you homeschool. You don’t remember the last time you had a good night sleep….oh and the house needs a new roof but there is a new therapy that may help your child so where is the choice….

Many people will tell you that you are not allowed to be angry about any of this. Many people will tell you that you are not allowed to be depressed about any of this. Many people will tell you that you are not allowed to resent anything in your life. Many people will tell you that you need to make peace with what is our life. To them I say Bullshit. You are angry. You are sad. You are depressed. You are furious at the way your life turned out. Does it mean you don’t love your child? Does it mean you don’t love your husband? Does it mean that you will run away never to be heard from again? No. No. And No.

What it means is that you are human and have a right to be disappointed, upset and angry about everything that has happened in your life. And yes it is not a bad thing to say it has happened to you. Sometimes things really aren’t just about your child. It is not selfish to want the things that make us human. It is not selfish to want to be able to take a shower, drink a cup of coffee in peace, go to the market and not have to deal with a meltdown (and those nasty horrible stares). It is not selfish to want to be able to buy some cosmetics in a department store and maybe a new pair of jeans along the way. It is not selfish to want to spend some time alone with your spouse. It is not selfish to want to have a mani/pedi and a real haircut once in awhile. It is not selfish to want to join a girlfriend for lunch and talk about nonsense. It is not selfish to want to have somethings that are not life and death in your life.

We, as parents of special needs children, focus all of our energies on helping our children progress and survive that in so many ways we forget about ourselves. We forget that we are human and allowed to have wanted a different type of life. I am not talking about the fairytale, nobody really has a fairytale life, but what we ask for is truly just the basic everyday aspects of existence. You are allowed to not be happy with the way things turned out. You are allowed to hate, what has become of your hopes and dreams. You are allowed to despise the doctor visits. You are allowed to be disgusted that your child has to be a test-tube for medications. You are allowed to be repulsed by the lack of support in society for parents like us. You are allowed to be depressed, angry, sad and resentful….Now what do you do?

You get off your ass and do what you have to do. Listen it is human and we need to allow ourselves to be human, to have every emotion and run the gamut from sad, depressed to violently angry (as long as you don’t act on that violence). There is nothing wrong with it and you can forgive yourself your own humanity.

You know I hate it when psychologists tell us that we have to mourn the child that we thought we were going to have. Not because we do have to recognize that things will be different, but they leave off the part about mourning the life we thought WE were going to have. I have found that every step of the way in my boys lives I have been confronted with just how different things could be for them if they did not have autism. Yes, my boys are some of the lucky ones. Yes my boys have potential. Yes my boys just may have the complete life they are entitled to have. But what about how every step of the way our lives would have been different too.

Therapists I think forget that everything is not always about the children. They worry that we, as women especially, will feel some sort of guilt for causing our children’s autism. Believe you me that was never an issue for me. The reality is that no one actually every discusses what you can do for yourself now that your world has been turned upside down. No one ever discusses what you can do for yourself to help yourself deal with the stress that has been placed on your shoulders; other than go to a therapist or take drugs. Truthfully I had had my fill of both very quickly. Therapists have no answer and quite frankly the drugs just made me fat, which didn’t really help my self-esteem or my health any. Neither provided me answers. I had to find that out for myself. No one ever discusses with you that you are entitled to a future just like your children. It’s as if as soon as that autism diagnosis is said out loud you cease to exist as a human being. I am here to tell you, that it’s not ok to cease to be.

I remember when collegeman was finally placed in his out-of-district autism specific program, which was in another regular elementary school. I came to help him at the book fair. While I winded my way through the corridors looking for his class, I passed several regular kindergartens. They were all sitting in a circle and singing a very innocuous song. They were laughing and clapping and being 5 years old. I knew my son could not do that and neither could any of his classmates. You bet I got angry. You bet I started to cry. You bet 15 years later I still feel what it was like in the hallway. I remember I made myself a promise, or rather, remade the promise, that I would help my children have the life they were entitled to, no matter what.

I had originally made that vow in the doctor’s office when they read the report on collegeman’s testing. No one was going to tell me my baby was not going to have a future. What I forgot to promise was that no one was going to tell me that I was not entitled to a future too. Now, as I have said before, I did come into the world of autism, before there was social media, facebook, twitter and on line support groups. You just didn’t find support in the world by answering an add or googling autism. There were no real conferences, books, YouTube videos to tell you whether you were on the right track or not. You were alone in a world, stuck in a house with some very disabled children. But that should have not been the end of my humanity. Luckily my parents aw that and bought me a little television for the kitchen so I could watch adult programming, even the news to remember that there was a bigger world. It was the best thing anyone had ever done for me. It reminded me that everything wasn’t about the boys.

I think it is important to remember our own humanity. I think it is important to remember that you are entitled to a new pair of sweatpants and a new bra every once in awhile. I think it is important to remember that you can buy yourself some new eyeshadow or descent face cream. I think it’s important to remember that you can read a book, go back to school, or even take an acting class if you want. It is important to remember that you need an outlet and that you are entitled to a life of your own as you make sure that your children have a future of their own. I think it is important to remember that you have access to media, information and support in the netherworld of the internet and in many cases we can find our voice in our own anonymity on line. Yes blog, baby blog.

But most of all I think it is important to remember that just because you are angry, sad, depressed, pissed off beyond any sense of reality, does not mean that you don’t love your children. I say it is because you do love your children that you are so angry. And you know what you are entitled to love yourself too. BTW I can’t stand the people that say they love their children’s autism because it is a part of their children. Bullshit. Bullshit. Bullshit. I have never heard such New Age namby pamby crap in my entire life. (So now the neurodiversity crowd will come after me that is fine.) But autism is not who my children are. Autism makes it harder to be who they are. Autism makes it harder to enter a room. Autism makes it harder to digest auditory information and make decisions. Autism creates anxiety. Autism causes their seizures. (Collegeman goes back into the hospital this weekend for another video EEG because his seizures are acting up and no one knows why.) Autism makes it hard for them to make friends even though they desperately want some friends. Autism makes it hard for them to go ask a stranger in a store for information. Autism makes it hard for them to learn how society functions. Autism makes everything hard period. Autism makes them the “other” in a world that is not ready for them. Autism makes them the experiment when all they should be are just boys. Autism keeps me up at night because I do not know how to protect them from the world outside once I am gone.

I say acknowledge that this anger comes from the fact that you do love your children. They did nothing to deserve this. You did nothing to cause this. Harness this anger. Harness this depression. Harness this really pissed off attitude and make it work for you and your children. We fight the good fight for our children, no matter how draining it is. Don’t’ forget to fight the good fight for ourselves; for our marriages; for our very existence as human being. We can also begin by just acknowledging that sometimes life just sucks. OK, enough bitching...Now its time to get to work again...

On another note:...Glee and The Big Bang Theory begin again this week...time to laugh and sing...and get over some of our being pissed off for awhile.

Until next time,