My Drug of Choice

I don't drink coffee. I drink herbal tea only. I don't imbibe alcohol, I don't
smoke pot and, my some miracle, I'm not on any antidepressants either. But it finally occurred to me that I do indeed have a drug of choice. It may not be the most conventional type of drug, but it does definitely induce a chemically-based high.

If you're my husband and you're reading this right now, and you are probably
guessing that it is chocolate chip cookies. I have to be honest, good cookies of any type runs a very close second. Well maybe not second-maybe fourth after my family.

I got in the car this morning to take my son to school. Nothing uniquely
different about this ride to school versus any other day. Blake and I buckled
up. I turned on the Navigation, a requirement of you know who. He can't possibly ride in the car without the map of the GPS being front and center. Flipped on the CD player
to the same CDs, same tracks as always (The Eagles: Long Road Out of Eden, or sometimes Santana or Bob Marley). And now comes my drug fix: I look in the rear view mirror, and I see Blake laughing and smiling and rocking out to the tunes on the CD player.






The truth is that I have a really strong addiction and it's not to any
chemical that I ingest. My drug of choice is a smile from Blake. And I don't
delude myself to thinking that it's not a chemically reaction. I am sure that
endorphins are running wildly through my body at the time creating a feeling of
euphoria that I get when my son is happy, smiling and laughing

So yes I'm hooked on him. I'm hooked on his joy. I'm hooked on his elation at
the little things of life like turning on the radio in the car, and when he
starts rocking out in the backseat I look in my rearview mirror and catch a
glimpse of his life when he's at his best.

Of course there's a flipside to this story. As Blake is bipolar, there's a lot
of days or minutes where his demeanor doesn't exude happiness. And then the
chemicals in my body exerts some other chemical, probably adrenaline, which
isn't as pleasant as endorphine.

Coincidentally, I had lunch with a long time acquaintance of mine. She was telling me that her son is moving out of her house into a group home in a couple of days. She is absolutely panic-stricken. I totally understand. Aside from the concern she has about how her son will manage in a brand new environment, she is overwhelmed about how she is going to handle it. Her son has been her life for so many years. She kisses him goodnight every evening. She has help with him, but manages every aspect of his existence. She has had the same caregivers for years and years. They are her friends as well as her support. She is concerned about what her life will be after he moves out. We both recognize there will be a period of mourning the old life, before embracing the new one can happen.

We talked for several hours. She knows it will be hard. But, she also knows that it has to happen. One day, we will all be needing to allow our son or daughter with autism or other special needs, to move out of our home and into a place that will be their home for when we are no longer able to take care of them. It's hard to fathom for most of us. But it is a part of the process.

But for the next few years, at least. I hope to still be able to get my "fix."

Sometimes I feel like I'm getting Alzheimer's

I know that I am not getting Alzheimer's. I have googled the signs and symptoms enough times to realize that. Still, there are some days that I just can't remember why I walked into a room or if I locked the door or who I was just about to call. I have read over and over again that these occurrences are just part of the normal aging process that people in middle age start to get. But still it's disconcerting. Especially because caregiving for a special needs adult requires so much memory: doctor appointments, medicine schedules, school or daycare requirements, grooming details, automatic vitamin deliveries, medication refill reminders. Well the list goes on and on.

I am really extremely organized. I have done everything I can to create schedules, appointment reminders in my phone, Post-Its galore. I have pill organizers, visual schedules, white boards for the other caregivers to alert me to items they are running out of, and other tangible tools to keep it all straight. And for the most part, these strategies work well.

But what has me boggled is how much it is necessary to rely on these tools. As time progresses, the need will increase, I realize that. But what will happen when the day comes when I don't remember to input all of these appointments into my phone or setup the daily medication dosages. Who will do it?

A couple of times, when Blake was younger, I brought him to a respite home for overnight visits when I had to travel for work. Both times, they screwed up his medication. And these were nurses. Sorry to sound paranoid, but this really happened. I think I still have Post Traumatic Stress from these occurrences.

So who will do it?

I just read something on a listserv that I haven't been able to stop thinking about. On the subject of what will happen to our children when we are gone, a parent wrote in that he basically doesn't worry about it, because he will be dead. I thought that maybe he was just some random person with a unique way of looking at things. But then a couple of parents wrote in that they agreed with him. I was so shocked that I started thinking about it. Is it possible that there are many people who feel this way, but just don't express it? Perhaps, they don't worry about what won't affect them directly? Do you think this is the case?

I know you can accuse me of over-thinking on this subject: Who will take care of our kids when we are gone. But in my defense, that is my job as a blogger and a writer. Right? But are there so others who just say whatever?

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!!