Necessary codependency

I remember back in the nineties a certain buzz word: codependent or codependency. Do you remember it?  Strictly speaking, it refers to the relationship that a person has with another individual who displays controlling or dysfunctional behavior. An example would be an alcoholic who is verbally abusive to his wife, or a overly critical parent who berates their adult child. The one individual is totally preoccupied with the needs of the dysfunctional individual at the expense of their own. Codependency can occur in any type of relationship. Again, in the textbook sense, the controller is characterized as a narcissist and the other as displaying low self esteem.  This relationship goes beyond the typical parent- child caregiver relationship. Surely, we put our children's needs ahead of our own when they are very young.  But unless we totally disregard our own needs, this relationship is not codependent. Codependency refers to the complete preoccupation one individual has for the other.

I was in a codependent relationship once. I never knew if this person was going to be nice to me that day or not. I was told that I was a below standard partner, and that is why I was receiving negative feedback from him.  I read book after book on how I could be a better mate. I was told to go to counseling to improve my behavior. I analyzed all my flaws and tried as hard as I could to improve. However, these "improvements" didn't seem to change the relationship. In fact, things deteriorated, and it became physical. I then stopped analyzing my behavior. I started looking at the relationship. I saw the codependency pattern. Eventually, I became a really bad partner-I left the relationship.

But now I am in another codependent relationship. This one is between my son with autism, Blake, and myself. It's a necessary codependent relationship. My entire universe revolves around him. Being that he is prone to meltdowns, aggressive behavior, and self-injuries, I must be on constant alert. I watch his every move every moment I am with him. I analyze his facial expressions for signs of distress. He's a jumper. He jumps if he is really happy or if he is really upset. Therefore, when he starts jumping, which is fairly frequently, I have to figure out if it is a happy jump or a distressed jump.  He verbally stims a great deal. Again, I must decide if I think his noises are indicative of a positive state of existence or the opposite. It can go either way.  

Like a wife who is married to a wife beater or someone who has a hair trigger, I often tiptoe around my son.  I do whatever I can to keep things calm. Blake likes his life predictable, so I utilize several techniques with him to keep him "in the know." he has a visual board which displays photos of all of his daily activities. His life is fairly routine.  I don't put much pressure on him, though he does complete a lot of his daily chores on his own terms. If something is going to change, I alert him and try to prepare him in advance. Sometimes this is a successful strategy-sometimes not so much.

Everything is wonderful in my universe if everything is wonderful in Blake's. And visa versa. If this isn't codependency, I don't know what is.

Sometimes, I try to reverse the dynamics. I try and exude lots of happiness when I am around Blake. My hope is that my joy will "rub off" on him and make him happy. Sometimes it works.  I get Blake to laugh and smile by doing it first. I realize it's still codependency. I know it's similar to a person who tries to control the situation in a volatile relationship by trying to be ultra sweet to the other person. But whenever Blake laughs and smiles, my heart is full. It's like a drug for me. Luckily, he's happy most of the time, and the bad moods are the exception rather than the rule. So I get my "fix" frequently.  Which means my life is wonderful most of the time.

But when he is agitated, things go down the tubes fairly quickly.  If I am lucky, he can get himself out of it without doing harm to himself or others by jumping up and down or pacing around his padded room for about fifteen minutes. For that period of time, my stomach is in a knot. When it's over, I start breathing again.  Sometimes, the jumping and pacing don't work, and we are into a full blown meltdown with the need for strong male caregivers assisting to keep everyone safe. When that episode is over, I need my own recovery period.

Codependency. It's necessary sometimes.

It Starts By Facing Your Fears

I know first hand the terrifying feeling of asking yourself what if? What if something happened to me? What if I got ill? What if I get in a car accident and I'm debilitated? What would happen to my child? Who would care for him or her? You know those questions that haunt you at 3:00 in the morning. The ones that you don't allow others to ask you. The questions that if someone actually gets the nerve to ask that you answer by saying something like, "I just won't get ill ever." Or even more illogical: "Well, I'm never growing old?". Ok, maybe you won't ever grow old, but that means you'll be dead, which isn't so great either in terms of providing for your child. Well, that's what a lot of us go through. Actually, that's at least a step in the right direction. At least we are admitting that our child needs ongoing life care for their entire life. There are still a lot of folks out there with involved adolescent or young adult children who are still hopeful that somehow some way their child will be totally independent-like in terms of getting married and going to college and being on their own. Seriously. I know these people. Sometimes, most of the time actually, I'm polite and reserved. But there is the inner me thats dying to be the Dr.Laura of the autism world and tell them to snap out it and wake up from the daydream they are having and face the music. I'm kind of starting to do it with posts like this, aren't I? Maybe what we can all start doing right away is just one little thing to be on the safe side. Face your fear. Accept the fact that there is a good likelihood that your special needs child will need some type of support service for a long time-possibly the rest of their life. And then be proactive. How can you do that, you ask? I recommend that you start by writing down everything that's involved in your child's life. Everything that you can think of and organize it in a way that someone else could follow it if they needed to. I've done that, and I organized it into sections of a book I call Blake's Lifecare book. If you want the blank sheets that you can use to put in your own child's information, I'll send them to you. Just email me your email address or leave it on the blog. Let's get started.

Let's Talk About the Future

If you have a child on the spectrum, you will have to a one point in your life, think about the future. Sure, if your child is young, you really don't know what the future has in store. I get it. But still, wouldn't it be nice to know that in case something happened to you, there would be a really good option for your child to live out his or her life?

The reason that most of us are so scared to think about the future is that, as a society, there hasn't been a large of group of people who have grown up to be adults with special needs. Yes, there are many people who have various types of developmental disabilities that are adults, but the large numbers won't happen until  sometime between 2015 and 2020 when the children of the autism epidemic grow up. So, we don't know what to do about this. We are not prepared. It's so hard to think about something that doesn't exist.

Some of us middle-aged parents are also part of the special needs sandwich generation. That is, we have older parents who need some sort of caregiving, and we also have our child or children who need caregiving. In regards to our parents, we kind of have an idea what to do. Maybe we are not certain, but at least we know what the options are. We know that eventually it is possible that one or both of our parents will get ill or infirm and require some sort of care. Our society is somewhat set up for this. There are facilities that provide assisted living arrangements, while other provide skilled nursing. There are also agencies that provide in-home supports in the case that our parents stay in their home. These are all hard choices-not easy ones. They require lots of preparation and resources. But at least we are not shocked when the day comes that these services are necessary. And most of us are willing to talk about it at least among ourselves. Maybe not with our parents-that's a whole other story.

But when it comes to our kids, we don't have many options yet. Depending on where you live, there may be a group home option or a residential facility. At least that is what is available today. Who knows what will be available in the future. One of the biggest problems that I see with the group home or residential option is that they rely on government funding. I, for one, am not comfortable with a facility for my child that relies on government funding. I mean, how can I be sure that there will be these funds in the future. If the government cuts that have been going on recently are any indication of what may happen in the future, I am just not comfortable with relying solely on that option. Group homes and/or residential facilities receive their funding solely from the government. They do not fundraise, They do not have trusts that offer some cushion. Nothing. Just government funding. That is not good enough for me.

I have been told that my thoughts about creating communities for individuals with developmental disabilities is pie in the sky. Really? Is it that ridiculous to believe that one day, there could be a self-contained community that my son could live out his life in a safe, secure, well-funded environment?

My book (a fiction story on this subject) is now available on amazon.com as well as Smashwords. Soon it will be on all the other retail sites like Barnes and Noble. But you can read it now on any device if you buy it (for $2.99) on Smashwords. Actually, you can read an excerpt for free on Smashwords. Please read the book if you have a child with developmental disabilities. We have to start talking about this subject if we are to make any strides.
https://www.smashwords.com/books/view/181423

http://www.amazon.com/Always-Leave-Them-Laughing-ebook/dp/B008MAGIWE/ref=sr_1_1?ie=UTF8&qid=1342747312&sr=8-1&keywords=valerie+herskowitz+always+leave+them+laughing

My new book is out!

I'm so happy to report that after 2 years in the making, my new fiction autism-themed book is out. Its called Always Leave Them Laughing. Here is a great way to read a sample for free: http://www.smashwords.com/books/view/181423 Here is a synopsis: Maddie Candell, a middle-aged, single woman, is the mother to JC, a young man who has developmental disabilities. He is severely involved and displays aggressive behaviors along with a very limited ability to take care of himself. He lives at home with Maddie, and her life follows a very strict set of routines that totally revolve around JC. Maddie insists on being completely self-sufficient and refuses to ask anyone for assistance. But one day, Maddie encounters a very serious personal situation. This occurrence causes her to evaluate her life choices. She begins to question whether her decision to be independent of others was the right thing to do. In addition, she realizes that she has important questions that she must answer. As she journeys down this path of self-discovery, a deeper life purpose emerges. She sees that she has no choice but to follow this road. It's not an easy one, and there are naysayers along the way, but she realizes there is no other option for her to take. As you can see, it's really targeted at our population: adult children on the spectrum. I hope you read it. I want to raise awareness about adults and the issues that face them. Let me know what you think