We've Come A Long Way Baby-Or Not

Having an autism ribbon tattooed on my arm has made me a walking billboard for autism awareness. Especially because it is summer, and I am wearing a lot of sleeveless shirts (good excuse to show off my new tat). Lots of people come up to me and say, “Nice tattoo.” Then I ask them if they know what it stands for. Guess what? I would say that it’s running about 70/30. Meaning that approximately 70% of the people that comment on my tattoo do not know what it means. Some people have guessed that its purpose is to raise gay pride awareness. Oops.

More than being able to identify the meaning of the ribbon, I'm still explaining what autism is. You would think with autism affecting one out of 54 guys and one out of 88 individuals in general, pretty much everybody would know what autism is by this time. Nope. I guess I'm going to have to go back to the time when I used to send families little cards that would talk about autism issues so that they could hand them out to people when they would look at our kids like they needed a good spanking.

I suppose my assumption that everyone knows about autism is due to the fact that autism consumes my life. I know what the ribbon stands for-how come you don’t know? Well, I decided to give my little arrogant attitude a test: I went online and I researched awareness ribbons. Then I checked to see which ones that I could identify. See if your score compares with mine.

Note: several of the colors stand for several causes, so my list below is nowhere near inclusive

Purple: Domestic Violence, Alzheimers and Lupus Awareness. Did I know this? Nope

Green: Cerebral Palsy, Celiac and Kidney Cancer Awareness. Again, my score was 0.

Red: Aids and Heart Disease Awareness. Shame on me. Didn't know this one either.

Pink: We all know this one, right. What a great example of a wonderful public awareness campaign. Statistics of the incidence of breast cancer are around 12% of women will get breast cancer. That equates to approximately 1 in 8 women.

Turquoise: Ovarian Cancer-If you read my book, you will know why I am kicking myself about not knowing this one.

And my favorite: Grey: Zombie Awareness. How could have not recognized this one? Oh, and also, Diabetes.

So this little exercise told me a lot-about myself as well as the society I live in. We ALL need to open our eyes to others. We can't live in our own little universe. Yes, I have a child with autism, but there are many other people out there with lots of other issues as well.

And most importantly, we need to continue to increase public awareness of autism. Our job is not done. Not that I am advocating that you go to extreme measures and embellish your body with an autism ribbon, however, I will take advantage of these hot summer days to continue to flaunt mine in hopes of spurning some conversation.

Just in case

I am sure that as parents of a special needs child, you have asked yourself the what if questions many times. What if I am in a car accident? What if I get sick and can't take care of my son (daughter)? What if I'm in a plane crash?

Should I keep going? No, I don't think I need to. I am sure you get my drift. If you are like me, and I am sure some of you are, you quickly dismiss the "what if" questions and go about your day, pushing those negative thoughts deep into the recesses of your brain where no one except the dream fairies can find it.

And oh those dream fairies. They sure like to get into your inner most thoughts, don't they? They like to find all your deeply hidden anxieties and make a whole lotta problems for you while you sleep. Ever have the dream where you can't find your child? You look and look, but can't find him (her)? I hate that one. It appears once every month or so. As if we don't have enough anxieties while we are awake?

The truth is, we really can get rid of those nasty dreams as well as the ogre disguised as a fairy. All we have to do is face our fears in real life. We have to look at reality and recognize that our "what if" questions are not that far fetched. They are actually possible if not inevitable.

If you have started to fill out the LifeCare book templates, then you are at the beginning of planning for the day when someone else will take over the responsibility of parenting your special needs child. Good for you. Print those pages out and put it into a binder with dividers, and you have the beginning stages of the manual called How To Take Care of My Child. It's a great first step.

I have one more idea for you. This might be fun. In addition to the templates, you should write a narrative about your child. It should be a story all about your child starting with what time he or she wakes up and exactly what happens after that. Blow by blow all the way until they fall asleep. You should pretend that you are explaining to someone what your child does every single day. In the story, you will want to include all the special things that you do for your child, all their reactions, every quirk or response to stimuli that you can think of.

Before you write the story, write an outline. List each area that you want to talk about-almost like you are writing a term paper. This way, you won't leave out any of the important details.

You can include photos in your story, too. A picture is worth a thousand words as they say. Maybe you are writing about a particular toy that your child must have with them at all times. You could put a photo of the picture so that if someone were to need to get that toy for your child, they could easily locate it. You could also embed videos. What a great way to demonstrate how you brush your child's teeth or in my case, how I prompt Blake when we are in the kitchen making our weekly quiche. Though the videos won't be in the print version of the book, you can reference them to the file on your computer.

There are many ways to approach this task. You can make it a fun activity or a sad one. You can look forward to writing it all down or you can cry your entire way through it. If you absolutely hate to write, there are good programs or apps so that you can dictate the whole thing. Dragon Dictation is one of the more common programs around designed to accomplish this. I don't do well with dictation. I am much more descriptive when I type, but some people are the opposite, and the dictation programs are effective for them.

Lastly, when you write, pretend that you are telling the story of your child to someone who is sitting next to you. Imagine you are being interviewed by a talk show host rather than looking at this as a document that may be used in the event something happens to you. This is a living document. It is dynamic in nature meaning that it will change with time. Today your child obsesses on his iPad. Next year, it could be something else. Our children change with time just as we do. We know them. We understand them. It is our job to try and teach others to know them as well. Just in case.

Just the Greatest GFCF Bread Ever

I realize that this is a little off topic for this blog. However, I just had to share. So here's the back story:

For the past 18 years, I have been involved in preparing gluten and dairy-free meals for my son, Blake. For many of those years, Blake has been soy, corn, artificial flavorings/colors free as well. Oh and nitrate-free, too. Probably some other "free" thing as well that I can't think of right now.

To add to this history, I have become enamored with baking for the past 3 years or so. Blake enjoys it as well. In fact, it's the first thing other than laundry and housekeeping that I can honestly tell you that he has excelled at and loves. Though I don't bake GFCF only, I have been doing a great deal of experimenting. And recently, we (meaning Blake and I), have come up with the absolute best, beyond a shadow of a doubt, GFCF bread that you will find anywhere.

I really put this bread to the challenge against any other GFCF bread, homemade or store bought. I know that sounds quite arrogant, and I don't like to brag, but it is really great. Very rarely can you get a baked product that non-GFCF people like. THIS IS THE ONE. And, on top of it, it's incredibly healthy. I have made it for several GFCF people that I bake for, and they are in disbelief that it is GFCF. It's also corn and soy free as well.

The original recipe came from Kim at her blog called Gluten Free Real Food. She supplied a basic recipe but had so many options that could be used that you really end up with totally different tastes in the breads depending on which milks, flours and fats you select. I am going to supply you with the recipe the way I finally perfected it, but if you want to see the original recipe with all the variations, here is the link:


So without further ado, I bring you the recipe. Even if you haven't ever baked bread, it's not hard. It is ingredient-heavy, meaning there are a lot of ingredients in it, but not difficult.

Wet Ingredients:
3 large eggs
1 teaspoon apple cider vinegar
1/4 cup of melted coconut oil
1 1/3 cup rice milk warmed to body temperature
1 tablespoon plus 1 teaspoon honey
3 tablespoons brown sugar

Flours:
1/2 cup of millet flour
1/2 cup of buckwheat flour
1 cup of teff flour
1/2 cup of tapioca starch
1/2 cup of potato starch

The remaining ingredients:
3 tablespoons xanthan gum
1 1/2 teaspoons salt
2 1/4 teaspoons dry active yeast (the equivalent of one package)

Directions:
Mix the wet ingredients together. Add the flours and the remaining ingredients. Stir together until the mixture is all blended.

Using a dough hook on your stand or hand-held mixer, knead for 2 minutes.

Note: If you are a seasoned bread baker, be aware that this mixture is very loose and does not come together into one ball like traditional bread dough. It's a cross between a bread mixture and a cake mixture.

Spray 2 small or one large loaf pan with cooking spray. Pour mixture into pans. Cover with a piece of plastic wrap, and put it into your oven that has been warmed just a teeny tiny bit (I set the oven to 170 degrees and then turn it off. Then I open the door to let most of the hot air out before I put the pans in. It should be just a warm oven that has been turned off and most of the hot air has escaped).

Let the bread mixture rise in the pans for approximately 40-60 minutes. The mixture should now come up to the top of the pans:

Take the pans out of the oven. Preheat the oven to 350 degrees. Bake for 30 minutes or until the loaves are cooked.

Take them out of the pans immediately. Let them sit for 10-15 minutes and then slice. YUM!!

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