A Young Man with Autism Bakes Gluten Free

In this world of autism, we are constantly reminded of what these individuals cannot do. But sometimes, there are instances where they do achieve. Blake Herskowitz is one such individual. He is a young man of 21 years with severe autism. When I use the word, severe, I mean that he cannot speak and needs 24 hour supervision. He is unable to care for himself. However, Blake has found something that he loves to do and that he excels in: Baking cookies and cupcakes. 

Since Blake was three years old, he has been gluten and dairy free. In later years, he also gave up corn, soy, artificial colors and preservatives. He is not totally sugar free, but he does often bake products for himself that contain alternative sweeteners like agave. Therefore, much of his baking is gluten free. 

Blake is an example of what a person can accomplish if there is a motivation and determination to succeed as well as someone who is willing to take the time to teach them the skills. Every person who exists on this planet can find personal success and a purpose. It may take some time and trial and error on the part of the people that support them to figure out exactly what that is. 

Check out Blake on his website at: www.misterblakescakes.com

Yummy and Healthy Chocolate Pudding-Gluten, Dairy, Soy, Corn and Egg-free

I had a tough day. My son, Blake, had to get his teeth cleaned. "So?" You say. Well, the difference is that he is a 21 year old man with severe autism. Getting his dental work isn't a matter of just going to the local dentist. What's involved is a two hour ride two counties south, a 3 hour wait, general anesthesia, a long recovery, throwing up, and then an even longer ride home with a half comatose person who doesn't understand what the heck is going on. Oh-and we had to do the whole thing with my son being on an empty stomach-really the hardest part for him. 

But as hard as it was for me, it was even harder for him. The dentist recommended a soft diet for the rest of the day. So I wanted to make a treat for him. So I decided to try and wrestle up some quickie chocolate pudding. Watching him gobble it up after a long and stressful day, really helped us both to recover. So here is an easy recipe for you. And you don't have to wait for a difficult day to make it.

Quickie Dairy, Gluten, Soy, Corn and Egg Free Chocolate Pudding:

3 Tablespoons tapioca starch mixed with 2 Tablespoons of water

1 1/2 cups Coconut Milk

1/4 Teaspoon Vanilla Extract

1/4 Cup Evaporated Cane Juice

1/4 Cup Unsweetened Cocoa

2 Tablespoons of Agave Nectar-optional

Mix everything together in a pot. Warm up over medium heat stirring constantly (watch that it doesn't burn on the bottom). It will thicken quickly.

Once it is thick, remove from the heat. Pour into a glass bowl. Wait a few minutes until it has cooled. Taste. If you want to add a little sweetness, add some agave until it's sweet to your desire.

Cool in refrigerator. Enjoy!

Delicious Gluten Free Cookies for the Holidays-Egg, Dairy and refined sugar free, too!

With all the holiday baking, we are always on the lookout for an easy and delicious cookies. My family has found a new favorite. Interestingly, I found it while I was trying to bake for a friend of ours who is presently undergoing cancer treatment and needed a treat that was low in carbs for Thanksgiving. So I made him these. Since then, my family has wanted them every day. And they are quick and easy enough to accommodate them:

Almond Chocolate Chip:

1 Cup of Almond Flour

2 Tablespoons of oil of your choice

2 Tablespoons of Agave Nectar

1/2 Teaspoon of Vanilla

1/8 Teaspoon of salt

1/4 Teaspoon of baking soda

1/8 Cup of Dairy Free Chocolate Chips

Directions:

Throw all the ingredients except the chips into your food processor. Process until the ingredients are all blended through. Stir in the chips. Then drop by small teaspoons onto your cookie sheet. Bake on 350 for 10-12 minutes. Let them set up for 15 minutes or so before you remove them from your cookie sheet. This recipe should make 16 cookies.

Back By Popular Demand

Many of my readers have responded very favorably to the last blogpost that I did regarding the Best GFCF bread ever, and also requested additional great GFCF recipes. As I previously mentioned, this is not a blog that is designed to focus on food, but I guess since a lot of our kids are GFCF, I suppose a post here and there about some great recipe that I come across or put together is ok. Right?

Well I did come across a GREAT new GFCF recipe. Actually, it wasn't dairy free, but I reworked it and now it is. YEA! Blake and I made them today, and they are really yummy. Even my husband liked them. But we didn't make them for me or for him, We made them for Blake,and he loved them. What are they you ask? I'll tell you: GFCF Oreos!! And they are also free of soy and corn as well.

To be honest, a regular Oreo kind of turns my stomach. I apologize to those of you who are die hard Oreo fans out there. But just the ingredients gross me out. However, these Oreos taste really great! I would use the filling recipe even if I was making regular cookies. The reason that they are better is because the shortening that I used is Spectrum Shortening, which is much healthier than Crisco.

The cookie itself uses Teff flour, which we used in the Greatest GFCF Bread ever. So here is another good use for that flour. It also incorporates white rice flour and sweet rice flour. Sweet rice flour is also known as glutinous rice flour, and it can be a little hard to find. They have it on amazon.com, but I was a bit in a rush to make these, so I located it at an Asian supermarket. And the difference in price was startling. It was $2.99 at the supermarket vs $6.56 on Amazon. However, if the convenience of using Amazon outweighs running all over town, I will tell you, you will get a lot of cookies from the bag of flour.

Note the sugar in the cookie: I stayed with 1/2 organic cane sugar and 1/2 coconut sugar. I'm just starting to get into using coconut sugar. It's a great sweetener as it is lower on the glycemic index. Also, the confectioner's sugar I use is the organic powdered sugar which is corn-free. If you don't care about the corn, you can use regular confectioner's sugar.

I made these just a tad too big, so they look a little like whoopie pies rather than cookies. Blake wanted two, but they are too big for that. I usually give him two cookies at a time.

So let me know if you like them. By the way, the original recipe is calculated in weight not volume which is a much better way to measure. But if you don't have a kitchen scale or you just don't like measuring by weight, let me know, and I'll convert it for you. You can email me at valerie@snaccers.com

Gluten-Free Dairy-Free Oreos
adapted from Gluten-Free Girl and the Chef
October 21, 2010

Yield: I only got 10 sandwich cookies out of this recipe, but mine were too large. I would most likely be able to get double the amount with a smaller cookie.


For the cookies:
80 grams sweet rice flour
60 grams white rice flour
35 grams teff flour
2 grams (1/2 teaspoon) xanthan gum
1/2 cup unsweetened cocoa powder (we used Dagoba organic)
1 teaspoon baking soda
1 teaspoon baking powder
1/4 teaspoon salt
1 cup sugar (we used 1/2 cup organic cane sugar and 1/2 cup coconut palm sugar)
140 grams Spectrum shortening
1 large egg

For the creamy filling:
58 grams Spectrum shortening
4 tablespoons Spectrum shortening
2 cups sifted confectioners’ sugar
2 teaspoons vanilla extract
Preparing to bake. Preheat the oven to 375°. Line a baking sheet with parchment paper or a Silpat.
Making the cookie dough: Put the sweet rice flour, white rice flour, and teff flour in a mixing bowl. Add the xanthan gum, cocoa powder, baking soda, baking powder, salt, and sugar. Mix together with a wisk or fork until blended. Add the shortening and egg and mix well using a handheld or stand mixer. Once it is all blended, it may still look dry, however, it will stick together when forming the cookies

Baking the cookies: Scoop a rounded teaspoon of batter and form a ball. Gently, flatten the dough in the palm of your hand. After you have flattened, smooth the edges of the cookie dough disk to make it evenly rounded. Place the dough disks onto the prepared baking sheet, about 2 inches apart. (These will not spread, but you do not want them to touch each other.)
Bake on the middle rack of the oven for 5 minutes, then turn the baking sheet 180 degrees. Bake until the cookies are crisp on the edges with just a touch of softness in the center, about 5 more minutes. Take the cookies out of the oven. After a few moments, transfer the cookies to a cooling rack. Allow them to cool completely.
Repeat with the rest of the dough.

Making the creamy filling. Blend all the ingredients together with your mixer. Clean the beaters first, of course.

Assembling the cookies: Spread the blob of creamy filling toward the edges but not entirely there. Gently, press the second cookie down onto the filling and watch the filling reach the edges.

Continue until all the cookies are little chocolate sandwiches with a creamy filling. Oreos.

Eat and enjoy!

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!!

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

Just a little bit of difference

Yesterday was my birthday. Everyone asked me if I was going to do something special. or if I wanted to do something special. I had some time to think about it. What does special mean? I guess, in my situation, special would mean something different. Different than my usual day, which looks something like what the dad and brother go through in the movie, 50 First Dates. Have you seen that movie? That's the movie with Drew Barrymore and Adam Sandler, where Drew's character had been in a car accident and she sustained a brain injury which impaired her short term memory. So everyday, she wakes up and thinks it's the day before her accident. She has no memory after that date. Which means she always thinks it's the same day every day. So every evening, after her character, Lucy,goes to bed, the dad and brother prepare the house so that Lucy will see everything is exactly the same. Anyway, you get my drift, I hope. Back to me. So that is what my life basically looks like. It's not exactly the same every day, but the week does follow a rather specific routine. And with Blake, there are definitely some routines that we follow very specifically every day. Blake has a visual board that illustrates, in photos, what his day will be like. And he diligently checks it every night before he goes to bed. He knows that most weekdays, he goes to school. I take him by car (there's a photo of my car), and he comes home by bus. He knows if it's Tuesday, it must be bowling in the afternoon. Thursday is basketball, and swimming on Saturday mornings. He knows his morning routine as well as his evening regime. He jumps for joy when I take out all the products and items that we use before bedtime, and even is happy when he takes his medicines, which are given on a precise schedule. As long as we are following exactly what he is expecting, he is very happy. Because of Blake's strict routines, I also have developed a rather specific schedule of my own to adapt to his life. I don't have a visual schedule, but I do have an iPhone that contains all my appointments. And I have my own set of "If it's Tuesday, it must be..." Oh my goodness. I've become Blake. Stuck in a pattern of routines that also bring a great deal of comfort to my life. I like it. It also brings a smile to my face. Is this bad? I don't know and I don't really care. I'm just appreciative that my husband understands. Actually, he's starting to develop a whole set of routines himself, probably to adapt to mine? So for my birthday, what did I want to do that was special? Did I want to rock the boat and get someone to watch Blake overnight, which would mean that I had to get someone else to take on some of the tasks that I normally do? No-too much energy. I do that on occasion when I travel for work. No-I think a nice dinner out with the other kids would really fit the bill-just different enough to call it special. We are doing it tonight since last night was a work night for the kids (they are all grown). I'm really looking forward to it. One cool thing about having a routine life, is that just a little bit of difference makes it super special. I'm really lucky!

A little radical?

Last Friday, I did something quite radical. I got a tatoo. Not a little butterfly on my ankle or a petite flower on my back easily hidden from the public. No, I got a rather large autism ribbon on my arm. Big and bold in all it's blue, red and yellow technicolor glory. It wasn't an impulsive decision. I had been thinking about it for almost a year. I'd would have probably gotten it sooner, only I was scared of the pain. I had even researched numbing agents. But when it came down to getting it, I decided that I wanted to feel it. Every scratch, pinch and poke. And it hurt. Not unbearingly, more annoyingly than anything. Especially, at the end when my arm was getting sore. It's actually more of annoyance now as it goes through the healing process. And it's much larger than I had originally imagined because it had to be to get all that intricate puzzle-piece detail into it as explained to me by the tattoo artist. So the $64,000 question that everyone, even my husband, keeps asking me, is why did I need to get this? Why would a 55 year old not very "tattooish" type person feel compelled to get this? I do confess I have another small tattoo gotten many years ago. But in general, I don't think anyone would peg me for the type. And here is the best answer I can give, because, to be honest, I don't think I really understand it completely myself: Autism has been an overriding theme in my life. Not only have I been living it 24-7 since my son was diagnosed in 1993, but it is my chosen profession which I selected many years before that. And I can't quite get my head around the fact that even though, it is widely known that 1 out of 88 children are being diagnosed with it in the year 2012, it's not the most important topic discussed on every TV, newspaper, blog, or any other media outlet. What the heck? If there was an epidemic of something else that appeared to be growing and growing year after year which had the affect of a life long possibly debilitating result which would require a society to basically support an entire entity of 1 out of 88 individuals wouldn't this be a huge thing? Remember the bird flu or swine flu thing? H1N1? I just can't understand it. Do the other 87 families really think their lives won't be affected at all? Oh really? Don't they pay taxes? And are we any closer to understanding what causes it? It seems that I read about another theory every week. But I'm not sure that in my lifetime we will know what is going on and how to stop it. And that makes me very sad. So that's one reason I got my tat. I'm sure there are multiple other reasons which I will be blogging about soon I'm sure.

Sorry it's been awhile since I posted. Been busy. I'm sure you know the feeling. :)
But I am going to try to make a committment to post each week. So please come back next week!

Meanwhile, I want to post about a conversation that I had yesterday with an acquaintance. She is a very nice person, and I mean her no disrespect. She is not a parent of a special needs child, just a friend.  But she said something that made me cringe a bit. She's about my age-mid 50's. We were talking about the future. I mentioned that I was getting a bit old to be doing what I've been doing (I was referencing the micromanaging of my son, Blake). I told her that I couldn't imagine doing it at this pace in 10 or 15 years down the road, and that eventually I needed to figure out another option. I guess because she is around my age she was taken back at the reference of being "too old?" I don't know. But she immediately jumped in and said, "you're not old!" Of course, I then referenced my comments back to the management of Blake and how a person of my age wouldn't normally be taking care of an adult child with special needs and all that goes along with that. "Okay, okay," she commented in relief realizing that my life bore no resemlance to hers, I suspect. I soothed her even more by saying that I still feel full of vim and vigor (haha), but not necessarily all the time. I mentioned that being in the mid-50's is not old to work or go on cruises (yes, I was a bit passive aggressive, I admit), but a tad bit over the hill for wiping behinds a (big hairy one at that!), dealing with school issues, and lots of doctor appointments. And having to be home at 10PM on a Saturday night to relieve the caregiver. Yes, a bit old for that. She got my drift!

This isn't the first time I have received comments that are in the same vein.  When I clarify, there is always the risk that I can make the listener uncomfortable, so I am careful when elaborating to be sure that the they understand that I take it all in stride. It's my life. And to be honest, I'm pretty darn happy most days. It's not easy, but I'm really ok with it. I know that I maybe can't plan like other people my age. My husband and I don't travel like our friends. And I know I have a lot on my plate. But I think I have a very deep appreciation for days that are uneventful, and I noticed recently that I don't ever complain about being bored.

As I was making my umpteenth call the other day, all things regarding Blake, I was suddenly overcome by the realization of what it takes to manage his life. We have a least 2-3 doctor appointments a month. He takes several medications, needs letters to certify his disability for this agency and that agency, managing caregiver schedules and payments, well the list goes on. I'm sure you can relate. I'm an extremely organized person. I have spreadsheets, charts and files of all sorts. And I truly don't mind doing this job. I do it with love and would be happy to do it for another 50 years. But I'm 55. Whose going to do this job when I can't remember things so well anymore? I do have a system for giving him all his medications each day. They have interaction issues, so everything is timed just so, so hopefully I'll be able to continue this routine for awhile. But who will do it when the inevitable will come? So you think about it?

So I thank all 64 of you who visited our blog on the first day. It's apparent that there are a lot of us in the same or similar boat. Though my living situation is working for us presently, I really don't know what the future will bring on that front. My bigger concern for the immediate future is what I'm going to do with Blake next year when he graduates from high school. Unfortunately, there isn't any options for him in my community. I find that incredibly hard to believe, but it's true. Nothing. Zero. Zip. Nada. I guess I've made my point. So as usual, I guess it's going to be up to me to figure something out to do. So, I've been thinking.... Something my husband says is a dangerous thing. LOL. But I really don't have a choice. HE CAN'T STAY HOME ALL DAY. So what should we do? Well, he likes to cook and bake. His favorite item to cook is quiche. It's fairly easy, and with assistance of course, he does quite well. He also likes to bake cupcakes, cookies and cakes. He isn't independent enough to work for anyone other than me. Do I have to open a shop? Do I have to start a business just to give my son a purpose in life? These are some of the thoughts that I've been having lately. What are your thoughts? What are your adult children doing to keep themselves busy all day? Have any of you started anything like a day program or cottage industry? Please comment!

Welcome to the first post of SNACCERS. SNACCERS as you can see stands for Special Needs Adult Children Caregivers. In other words, if you are the parent of an adult child (18 years and up) with special needs, and you are involved in caregiving in any fashion for your child, I think you will enjoy our blog. You may want a clarification of what it means to be a caregiver. Well, there are many ways in which to be a caregiver. In my case, my 21 year old son with autism, Blake, sort of lives at home. "Sort of" because he lives in his own home which is attached to my home. Like a mother-in-law cottage. He has 24 hour supervision, which isn't myself all the time,but I'm quite involved. I do a lot for him, but also have help. So I am a Snaccer. Now there are many other types of caregivers. I know people who's child lives in another setting, but they are still actively involved in managing their child's life. They are most certainly Snaccers. Then of course, many individuals still live directly in the family home. What kind of SNACCER are you? Where does your child live? Tell us about your situation. Val