A Reminder of the Prevalence of Autism

Today was the best, if not the strangest, afternoon I can remember having in quite awhile. It was a great day but with the number of other autism moms I saw today (amongst only a few moms total), it also served as a reminder of the prevalence of autism.

First, we started off by going to the dentist. Both kids behaved fairly well. That is, if you don't count the timeout Reiss got for banging on the side of the aquarium in the dentist's waiting room. It was not very hard but certainly hard enough to scare the bejeezus out of any fish unfortunate enough to call the tank their home.

In the waiting room, it was nice to recognize and talk with another autism mom whose children used to go to the same physical therapy office where my children went. Her boys' appointments coincided with my kids' appointments and we used to chat each week. Our insurance allotment of appointments ran out mid-year last year and I kinda lost touch with the mom, other than the occasional passing of one another on Facebook.

Our visit to the dentist's office reminded me once again of my spectacular memory, or rather, the lack of it. The dentist found a somewhat large cavity in one of Milla's teeth but it was nothing new to me. He told me about it on the last visit but I forgot to make an appointment to have it fixed. It was only after the dentist examined Milla on this appointment that I remembered that she had a small cavity. That small cavity is no longer small.

When Milla was finished with her exam and had picked out her Princess and the Frog toothbrush, her ABA therapist took her to her social skills group. Cavity-free Reiss and I then left and headed to the Y.

At the Y, I hadn't even taken my coat off when I saw there was another autism mom I know. This one I knew from her son and Reiss being in the same developmental preschool. We started talking, or maybe venting is a better word for it. We both feel lost about where to send our children for kindergarten next year. Another mom heard us talking and came over and joined in our conversation.

Thank goodness for eavesdroppers, especially when they are other autsim moms!

I felt especially fortunate for this other mom listening to our conversation because when she joined us, I learned that she is not only in my school district but, with a son who is ten years old, is also experienced in dealing with my school district's ways - two traits that I have found particularly difficult to find simultaneously occurring with other autism parents I meet. We hit it off immediately and an added bonus is that she has a daughter Milla's age. We exchanged phone numbers and I am excited at the prospect of having a new playmate for Milla.

As if all that excitement was not enough for one afternoon, another mom I have seen at the Y on occasion came over and spoke to us. She has two nephews with autism. We talked for awhile and she offered that her nephews recently went gluten-free and have shown amazing improvements.

While all this was going on Reiss played and played and played for nearly two hours straight with minimal intervention on my part. He played so wonderfully that I doubt anyone realized Reiss is just a little different than other children. Had it not been for seeing so many other autism moms, I may have even felt like any other parent just having an afternoon out at the Y. I think, just maybe, I may have even relaxed a little bit....

Miss the Bliss

Yesterday evening I went to my local TACA chapter's Coffee Talk meeting. Coffee Talk is, essentially, mommy therapy for autism moms, although an occasional dad shows up. It is a less formal, unstructured version of our regular TACA meetings; a time for talking about anything autism-related and everything else under the sun.

There were only four of us, including myself and three other moms. Somehow along the way we got on the topic of how autism affects every aspect of the lives of a family who has a member with autism.

I remember not long after my son was diagnosed, my father had become increasingly aggravated with me and told me it was because we (my family) had become so involved with autism that our entire lives revolved around it - as if we could just choose to separate ourselves from autism but instead made a conscious choice not to do so. Wouldn't it be great if it really was that simple?

Having only been into this journey for a short time when my father told me that, I did not know that my response should have been, "Yes, you are exactly right! Our lives do revolve around autism because autism has made itself a part of every single aspect of our lives."

No matter how much I would love to separate autism from our lives, it is there. It is always present and always finds a way to creep itself into every little detail of our lives.

Parents of typical children wake their children in the morning. In my house, my husband and I may be awakened at any hour of the night by our children who do not sleep well. Children with autism generally have an imbalance of seratonin and lack the ability to produce sufficient levels of melatonin - two hormones that, when out of balance, make for very poor sleep.

Parents of typical children give their children breakfast. My husband and I give our children a gluten-free, casein-free (GFCF) breakfast and more vitamin and mineral supplements than most professional athletes take. My children are full of metals and have gastrointestinal problems that cause them to have low levels of essential nutrients in their body or the ability to process foods properly in order to acquire those nutrients. The GFCF foods they eat help to heal their gastro issues and the supplements provide the nutrients they need where their bodies fail to obtain them through food.

Parents of typical children send their children off to school and bid them a nice day. My child goes to a private school with a full-time aide provided by our insurance because our public school system refused to give him an aide or allow our aide in school with him. They also refused to put necessary safety measures in place to ensure my child's safety without an aide.

Parents of typical children set up playdates for their children. My children attend a social group where they are integrated with neurotypical peers. Finding a playdate for a child with autism involves a monumental search equivalent to finding an ice cube in the desert. No, that's not right. Finding a playdate for a child with autism is not that difficult. The difficulty is in finding a lasting playmate for a child with autism.

Parents of typical children put their children in sports and activities like soccer and dance. My children take swimming lessons specifically for children with special needs so that they can receive one-on-one instruction.

Parents of typical children think nothing of sending cupcakes or cookies to school with their child for his or her birthday. When this happens, if I don't know in advance, my child is left out because he cannot eat the birthday goodies. How's that for "inclusion?" I did not choose to have my child on a special diet - his physical needs made that choice for us.

Parents of typical children think nothing of packing the kids in the car and taking off for a round of errands. For my husband and me, there is no such thing as a "round" of errands. If we can make it to two places with minimal problems and tantrums, we feel lucky.

Parents of typical children hire a babysitter for an evening and have a lovely evening out on the town for date night. My husband and I pay twice the amount for a babysitter as what typical parents pay and then we go out for a few hours with the hope that our son's next seizure will not occur on our caregiver's watch.

Parents of typical children take their children to the park or the library or a family outing and then relax or read a book or mingle with relatives while their children play. I have never been able to relax at a park for fear of my child bolting from the scene (children with autism are notorious escape artists) or injuring himself on the playground equipment because of his poor muscle tone caused by his autism and its internal workings or because he is having a tantrum for one reason or another. I have never read a book while my children play at the library, again, for fear that my child may bolt from the scene. I have mingled with relatives at family outings but only because my husband was overseeing the care of our children at the time.

This is what I mean by missing the bliss that other parents are fortunate enough to have. Actually, I do not miss it, as that would imply that I had it at one time. I have never had that peaceful bliss of just letting my children exist and play and live carefree lives. That bliss was ripped away from me just the same as a small piece of hope for my children to lead independent adult lives was ripped from them when they developed autism.

I have no point here, really. At this point, I am so over autism and while both of my children have made great strides towards blending better with their peers, autism still makes its presence very well-known on a daily basis. I grieve the loss of that carefree life I see so many parents around me living every single day.

Where Have I Been?

That title reminds me of the Dr. Seuss book, Oh, the Places You'll Go!

Well, where have I been? That's a good question! I have been a bad mommy blogger and have all but totally neglected this little piece of my world for around two months now.

Just like a lot of other folks, one of my excuses for absenteeism is the busy-ness of the holidays. My other excuse? Stress.

During the month of December, Reiss had three seizures and a fourth episode that can only be described as what looked like a seizure trying to happen. I say "trying" because Reiss is on anti-seizure medication and the symptoms he displayed during that particular episode appeared the same as his symptoms at the beginning of any other seizure (look of extreme fatigue, unresponsiveness, but still conscious) but he did not progress any further to some of the more extreme symptoms such as his eyes being fixed to one side or convulsing. Instead, he got a little bit spacey, told me he wanted to lie down and then, he simply fell asleep...for nearly six hours straight! And that was right after he had gotten up for the morning and eaten breakfast.

That was not all. We also had the return of Reiss's persistently bloody nose. We think we have that one figured out though. We added a zinc supplement back into his regimen, which he had been lacking for a few weeks because we had run out and we were not sure how much of a difference it was making. Once that was added back in, the incidents of Reiss having a bloody nose on a daily basis disappeared immediately and he has not had one since then.

So that was our December. As if December, with its holidays and preparations and special events, does not already present itself with enough stresses and frustrations without the addition of daily bloody noses and the riddling of seizures here and there.

On a happier front, we did have our share of holiday good times...

Above is a photo of Reiss and Milla decorating Christmas cookies (GFCF, of course!) at the house of our good friends, Matt and Staci. Staci is a registered dietician and is very familiar with the restrictions of the diet we follow in our house. They invited us over for cookie decorating and Staci so generously accommodated our needs by making cookies Reiss and Milla can eat.


It would not have been Christmas had we not gone out on a few occasions to check out decorations in several different neighborhoods. I read about the decorations of the house above in an Indy Star newspaper article featuring the best light displays around town. Granted, it's not really very Christmas-y in nature, but living in Indianapolis and being Colts fans, it was indeed cool to see.


On December 21st, Reiss achieved quite an accomplishment for any five-year-old. One of his ABA therapists made him the award pictured above. It has been hanging on the wall since that day and Reiss has counted to 1000 many times since then as well.


This is the only photo we have of both children on Christmas day because, not long after this was taken, Reiss had a seizure. No, the poor little guy could not catch a break even on Christmas Day.


I think this photo (taken the day after Christmas at my dad's house) of Milla looking at me makes her look so sweet. Please don't look at my big, pointy nose or double chin.


Milla was quite the little helper with Reiss's gift. As a matter of fact, she was so helpful that day that she opened most of my gifts while at my dad's house and I had no idea of what I received until we got home and got everything unloaded and unpacked. I still have no clue who gave me which gift.

That just about covers our holiday season. Yes, I am quite late to the punch, I know.

January has been snow and appointments and school cancellations and exercising and weight loss and oh yeah, did I mention that I have lost nine pounds since the beginning of the year?

I do not mean to brag but I have remained extremely dedicated and focused on losing this weight...again. At least I did not let it get really out of hand before tightening the reigns again. In the past I have been - how shall I say this? More tolerant of my own weight gain before getting it back under control. I was fat. There, I said it. In the past, I have let myself get to what doctors categorize as being obese. Personally, the image of obesity that comes to mind for me is someone who is so morbidly overweight that s/he can barely walk. But for the record, "obese" in medical terms generally means a BMI of more than 30 and/or being more than 20% overweight. This time around, I met neither of those requirements, thank goodness.

Weight loss is not the only change that is coming in our household. We have another BIG change coming soon. BUT I cannot tell about it on here just yet. It is a secret. Stay tuned...

B.R.A.T: It Is Not What You Think

Several weeks ago, I was giddy with excitement after having just received a goody box full of B.R.A.T. Organic Feel Better Drinks for my kids to take for a test drive. When I spoke with the owner of the company, who also happens to be a Facebook friend of mine, we agreed upon a review on my part in exchange for a free sample on her part. I had no idea her version of a "sample" would include all four flavors of the B.R.A.T. product.

Seriously, during my blogging days, I have agreed to plug for quite a number of companies whose interpretation of the words "sample our products" ended up being a single-sized serving or less of only one variety of their product amongst a line filled with many varieties. I am not one to complain when something is given to me for free, but when I agree to a review, I am not really getting the product for free, now am I? So when I agree to take the time to try a company's product and write about it, I expect a bit more than what the lady at the grocery store hands out on Sunday afternoons. How many companies are generous enough to send their entire product line?

If you are not familiar with the B.R.A.T. drinks or the more commonly known "BRAT diet" prescribed by doctors far and wide for upset stomach, then you may be wondering why anyone would give their child a product called B.R.A.T. or subscribe to the philosophy of a diet that seemingly might turn a little tyke into an obnoxious, out-of-control, spoiled...brat. Furthermore, if you are not familiar with the BRAT diet, it is likely you have never been sick since this go-to remedy is the catch-all advice from doctor to patient. For the rest of us, we know when our doctors prescribe such a diet that he or she is recommending bananas, rice, applesauce, and toast.

But let's say you or your little one is not feeling 100% and eating is out of the question for whatever reason. I had not planned on being graphic, but let's just say all the plumbing is getting a fierce workout, where do you turn for nutritional replenishment? The human body still needs incoming nutrients and electrolytes and unless your definition of good nutrition includes consuming artificial flavors, dyes, sweeteners, and preservatives, it is best to skip the Pedialyte.

Enter B.R.A.T. drinks - the Bananas, Rice, and Applesauce Tummy Soother

Nope, no toast in these drinks!

B.R.A.T. drinks:

• Come in four flavors: Original (kinda fruity), Vanilla, Cinnamon Toast, and Chocolate Honey.
  
• Are USDA Organic! Who doesn't love that??
• Have vitamins and calcium.
• Are free of the eight most common allergens, which is especially important to many people in the autism community and those people, in general, who have severe allergies.
• Taste great! And after all, a product can have all the nutrients in the world but if a parent cannot get it into their child's body, it is worthless - Right??

My family loved the B.R.A.T. drinks. My kids' favorite flavors were the Cinnamon Toast and Chocolate Honey. It is, however, difficult to say which they liked more, as their only responses during our taste tests were "Yummy!" and "More, please!" The Vanilla and Original flavors were well-liked too, but kids just go for chocolate. Or, at least, mine do.

B.R.A.T. drinks can be found at several supermarket chains nationwide. If you cannot find this product locally, I recommend speaking to the manager of your favorite health food store or wherever you shop frequently. If they are not willing to stock B.R.A.T. for you (find somewhere else to shop!), B.R.A.T. drinks can also be purchased on Amazon.

To your health! And that of your brat child - stay healthy with B.R.A.T.!

Gluten-Free, Dairy-Free Vegetarian Silly Burgers

Silly Burger dressed with fresh cilantro, salsa, and halved cherry tomatoes.

This recipe is very loosely based on a recipe by Paula Deen called Black Eyed Pea Cakes.

While I would never accuse the charmingly southern-accented Ms. Deen of developing a bland recipe, I did, however, feel when I first tried her black eyed pea cake recipe that I could improve upon it in a way that creates an end product that is not only healthier but more flavorful.

Somewhere in my blood an ethnicity that is drawn to cilantro and cumin apparently exists and, for that reason, I will add one or both of them to nearly anything in the kitchen. For my children, foods need only be called burgers or fries and they come running. As a family, we also eat a diet free of gluten and dairy products. My recipe for Silly Burgers meets all our culinary tastes and dietary needs.

Silly Burgers - Approx. 10 "burger" patties
3 cups cooked black eyed peas, drained well
1.5 cups grated zucchini (approx. 1 average-sized zucchini)
1 cup diced onion
1 cup diced roasted red peppers
1 egg (for vegan option, leave out and add 2 T. GF flour)
1/4 cup GF flour
1 clove garlic, minced
1 teaspoon cumin
1 teaspoon sea salt
Oil for pan

Optional garnish:
Fresh cilantro, diced
Your favorite brand of salsa or make your own fresh
Cherry tomatoes, halved

Heat oil over low-medium heat. With a potato masher, mash the black eyed peas. Add all other ingredients minus the oil. Mix well and spoon out into skillet, flattening slightly to make patties. Cook until golden on both sides. Garnish and eat with a fork or serve on a bun as a burger. Enjoy!

And yes, my kids really do eat these and come back for seconds!

Be Part Of The Revolution!

Okay, probably not a revolution and in the big picture, it is actually so trivial I cannot believe I am blogging about it but what the heck else am I supposed to do at eleven o'clock at night when I can't sleep and I have already raided the refrigerator? I mean, there is no hurry getting to those dishes on the counter. Or that puddle of spilled whatever that is on the floor. It will be easier to clean up when it's dry, anyway.

I will explain the "revolution" part in a moment but here is a shameless plug for a product I love and for a company who is not paying me a dime to brag on them.

Sunshine Burger "burgers" are one of my favorite convenience products for those nights when I either do not feel much like cooking or on Meatless Mondays in our house when we are....well, meatless in regards to our dinner. All varieties of Sunshine Burger are gluten-free and vegan and with their main ingredient being sunflower seeds, they pack a hefty punch of protein. If you happen to be one of the many in the low-carb crowd, the Original and Garden Herb varieties also offer a relatively low carbohydrate count with only 11 carbs per patty when you subtract the dietary fiber content.

Oh, wait....you say you are stuck on the part about sunflower seeds being in a "burger?" Do not be scared - these are not like so many other meat replacement products. Unlike some sham-burgers out there, these have flavor. And we, my family and I, actually eat them - so they are definitely not cardboard hippie food.

So what about the revolution? No, I am not planning a coup attempt. A few days ago, I posted to Sunshine Burger's Facebook Wall (because that sinkful of dishes and pile of clutter on the counter and the dirty bathrooms and the piles of unfolded laundry are all just illusions and I really am the most organized, best housekeeper in the world who most certainly does NOT have time to sit around and post random, meaningless things on Facebook....seriously) inquiring as to why their product is packaged three patties to a package. And now today, (because I am surely the only person who has ever asked about the 3-count package) Sunshine Burger posed a question to the fans of their Facebook page: "Who likes the Sunshine Burger 3 pack?"

AND that is not all. I, personally, received a message from someone at Sunshine Burger informing me of their quest to find out the preferred number of patties per package.

I told my husband I am taking credit for this revolution (please, PLEASE, note the sarcasm!). We are going to change the world.....or maybe just get Sunshine Burger to put an extra patty in those little packages and call it an even day.

If you want to be part of the revolution I started have your voice heard, please visit Sunshine Burger's Facebook Wall and state your preference.

And if you are still reading this and you think I have a superiority complex, please don't waste your time on my revolution. Stop what you are doing and work on obtaining some inkling of a sense of humor.

This AIN'T Nutella!

Because it is way better than Nutella!


A few days ago, during one of those rare moments when I get to sit down and not only watch television, but hear it as well, a commercial for Nutella came on. In a previous life, I loved Nutella so much that I could have eaten the better part of an entire jar of the stuff in one sitting. Okay, who are we kidding...I could have eaten a whole jar, depending on the level of comfort I was seeking at the time. But those days of eating Nutella by the jar, or at all - for that matter - since we no longer eat dairy, are gone and how I miss them so.

So when this commercial came on for that oh-so-yummy chocolate hazelnut spread I got to thinking to myself, how hard could it be to make a gluten-free (Just so that I do not mislead - real Nutella does claim to be gluten-free but because it contains dairy, it does not meet our specific dietary needs.), dairy-free Nutella copycat from scratch?

I made plans to purchase some hazelnuts on my next trip to the health food store and I would "wing it" with my attempts to create a homemade "Nutella." A good dose of hazelnuts (Nutella only claims to contain approximately fifty hazelnuts per 13-ounce jar), some cocoa powder, agave nectar or perhaps some coconut palm sugar, coconut milk (the real stuff, not coconut milk beverage), and some vanilla and I was certain I would have exactly what I was looking for and would have made it with less sugar and with real ingredients, unlike like some people whose product contains so much sugar, it qualifies for the lead ingredient on the ingredients list.

Right about now, I feel like I should be doing the nah-nah-nah-nah-boo-boo thing here.......in their defense though, at least they are using sugar and have not jumped on the high fructose corn syrup bandwagon.

Okay, so fast forward to yesterday when I got done at the Y a little earlier than expected and decided to swing by the health food store on my way home. I was in the refrigerator aisle looking at all the different bags of nuts, looking for hazelnuts, when a little voice inside my head told me to check out the regular store shelves in that same aisle - which happen to contain nut butters, jams, preserves, conserves, and other goodies I should not eat - just to see if there were any sales.

(And, gee, I wonder where my son gets his inability to stay on task and focus for any given ten seconds.)

Right there smack in front of me was a "NEW!" product and if you have not guessed what it was, I will give you a hint: I believe predestined drive exists, in this case, my drive to purchase hazelnuts led me to find a product exactly like the one I was there buying ingredients for to make from scratch.

Justin's all-natural Chocolate Hazelnut Butter contains no artificial ingredients and the first ingredient on the list is - who'da thunk?!? - hazelnuts! It tastes like a grainier version of Nutella and is not quite as sweet, which is fine by me, considering we have cut out many sugars from our diet in our house and our palates have, as a result, become quite sensitive to "sweet." The maker does not claim the product to be casein-free but the label states that it is gluten-free and dairy-free and there are no obvious casein-containing ingredients listed. With that, I consider it to be "safe" to give to the kids and gave them small spoonfuls to try, just in case they might have some reaction or intolerance to the hazelnuts (Reiss blows serious chunks whenever he is given cashews). They loved it!

They loved it so much so that half the jar is gone only one day later! We sat around and ate it by spoonfuls (or is it spoonsful? Like mothers-in-law instead of mother-in-laws), pulling a new spoon out of the drawer with each bite....no second-hand spit-containing double-dipping allowed here!

At $7.89 per jar on sale, perhaps I should go back and stock up.....????

And no, Justin is not paying me to say any of this. Just as I was not aware of the existence of his product until yesterday, most likely he has not found me yet either.

EDIT 7/7/2010: I do indeed plan to call the company to be sure they are using gluten-free vanilla and to make certain their cocoa butter is truly dairy/casein-free. Unfortunately, as I learned yesterday from a visit to a local farmers market, sometimes when people say their product is free of gluten or casein, what they don't realize is that - while their own finished product may not include gluten or casein-containing ingredients - the ingredients themselves may have gluten or casein in them. i.e. Not all brands of vanilla are gluten-free.

A Monster Of A Party!

Last week, our first-born monkey turned five years old!

I always have to laugh when other parents make the observation of their children growing up so quickly or empty-nesters whose grown children reached adulthood "in the wink of an eye." They all seem to say the same thing: "Where in the world does the time go?" Well, I will tell you where it goes or at least, where it went for me. For the first three-and-a-half years of being a parent, it ticked by so incredibly slowly all while I wondered if my "baby" - who was definitely no longer a baby - would ever stop waking every hour through the night, sometimes two or three times per hour, and if I would ever get any sleep again in this lifetime.

Alas, after starting our special diet and being convinced of its effectiveness on the very first night (the first night Reiss ever slept through the night in his whole entire short life!), we were finally getting some sleep and everyone thankfully survived. And now we are at five years old! FIVE! Who knew I would make it this long and live to tell about it? But I am definitely here and, unlike back then, time does not tick by nearly as slowly now that I am asleep for at least part of it in any given twenty-four hour period.

Enough of my woes....Can you tell I am so thankful for sleep?

Last Saturday we had a party for Reiss and rented a bounce house in the shape of a monster truck. Yes, I know how much bounce houses cost and I am also aware that our rental cost almost as much as buying one. And furthermore, I have chosen to say "enough is enough" regarding toys and clothes and stuff and things that require space for storage and I made the wise decision to go with the option of having someone else worry about where to store such a large item as a bounce house.

Yes, renting a bounce house is not an investment with endless returns but not having to store it makes up for all those "lost" returns.

Reiss wanted to keep the bounce house, as trucks are one of his favorite things but, as we explained to him, by having people who come to get the bounce house (instead of keeping it), we get to choose a different one every time we rent one. Milla has already called "dibs" on the princess castle bounce house for her birthday in October. Little do they know that renting a bounce house is not something that will happen with a whole lot of frequency.

We took some really adorable photos, however, due to privacy issues with other parents' children, only photos of Reiss and Milla are posted.






All of the above photos were taken before Reiss's party began and while Reiss and Milla were the only children playing in the bounce house. Just prior to the start of the party, I changed Milla into a perfectly-party-appropriate dress with a cupcake on it.

Reiss painting a car bank. It was one of the prizes leftover in the prize bin after the party.

From left: Crystal (Reiss's BCBA for his ABA therapy), Reiss, Milla, Heather (one of Reiss's ABA therapists)

Reiss getting ready to open his first gift. In this photo, we also have Anne, who is not one of Reiss's therapists but works for Crystal and was here with one of the children present at the party.

Reiss had $23 from his birthday to spend at Toys R Us. So what'd he get? A princess dress for Milla! We tried to persuade him otherwise but that is what he wanted to buy. He also bought himself one of those hippity-hop balls. I have no idea what the real name is for them. They are those things a child sits on, holds onto the handle, and jumps around on.

My little five-year-old prince and princess....

He Gets It! He REALLY Gets It!

Reiss turned five years old today. His first words when he saw me this morning were, "Today is my birthday!"

and right after that,

"I'm five!"

I nearly poured out buckets of tears. Tears of joy, that is!

My first thought was that he gets it. He finally "gets" the whole excitement surrounding birthdays. It was like that line Sally Field became so famous for in her Oscar acceptance speech in the 1980's: "You like me! You really like me!" Except for the fact that she didn't actually say that. That was simply the gist of what she did say and what has gone down in history in the minds of the masses.

Reiss, however, does "get" it. He really gets it now that birthdays are something special. I must say with each of his previous birthdays I have wondered if he would ever understand the concept of birthdays and the anticipation of one's own birthday, let alone when he would ever understand. Even around this time last year, Reiss demonstrated no understanding of the concept of birthdays or of them being cause for celebration. He exhibited no interest in opening gifts or any of the traditional birthday celebratory activities.

And this is where I interrupt our regular programming for a public service message.

When I try to describe all the things that make up our particular world of autism, it is extremely difficult to describe to someone who has only experienced having or being around neurotypical children. While Reiss is one of those children who definitely falls onto the spectrum of autism, his particular challenges are not easily pinpointed without going into great detail.

Birthdays are one of those areas where parents of "normal" children take for serious granted. Neurotypical children have birthdays, they get excited about them at a fairly young age, and their parents usually do their best to make their child's big day special. I would venture to say that many of those parents cannot fathom their child not being excited about his or her birthday. On the other hand, many parents of children with autism often wonder if there will ever be a year when their child will get excited over his or her birthday. My husband and I are no different from most parents in that we have tried to make Reiss's birthdays special but the whole concept has always eluded him...until now. His excitement left me with such hope for the future that I am certain is way bigger than any gift anyone could give to him.

My point?

When your "normal" child is sitting there whining and being a little patoot about his birthday gifts not being exactly what he wanted or when your little princess's heart is broken because you rented pony rides instead of a royal bounce house, just thank your lucky stars that your little turkey is even aware of that one special day each year.

End of public service message. Getting down off my soapbox now.

We are having a big bounce house bash for Reiss on Saturday but here are the photos from this evening....




The cake is gluten-free and casein-free, of course, and can be viewed HERE. We purchased three of them from our local health food store. If you are interested in purchasing this kind of cake, you might check with your own natural foods market or health food store. From what I understand, the Shabtai website is frequently out of stock on this item because so many distributors buy up their stock whenever they get them made. Plus, I paid less buying ours from the health food store than what the website charges.

Their photo, nor mine, does this cake justice. Theirs does not look exactly like the cake we have, as the flower in the center of the cake we have is made of chocolate icing, while the one on their website has colored flowers. I am pretty certain they have gone to the chocolate flower and just have not changed the website photo. The chocolate flower makes the cake seem so much more elegant, in my opinion.

Our Sunday BEST: A Revelation

For nearly five years in our house, every Saturday morning, without fail, we have had Pancake Saturday. In that time, I cannot recall a single Saturday when we have not made pancakes and we always make them from scratch.

For several months now, we have also eaten the same thing almost every Sunday morning as the previous Sunday morning and it was just this afternoon when I had a revelation. The acronym for our bacon, eggs, smoothies, and toast we eat on Sundays spells out the word "BEST." So from this day forward, our weekend breakfasts will consist of Pancake Saturday and our Sunday BEST.

Yes, I will admit I have some oddities. It's okay - I'm fine with owning up to those oddities.

By the way, I was going to wish you all a Happy Father's Day but with it being 12:22 AM on Monday morning, it looks like I am a little late to the punch. Hope it was a good one!

For our Father's Day.......

--- I called my own father and wished him a happy birthday and a happy Father's Day. My dad's birthday falls on the same date every year (one would hope so, right?) and some years that happens to be on Father's Day. This year was one of those years.

--- Reiss gave James a "hot glove" (that is a Reiss-ism for what others might call an oven mitt) he made at his ABA social group. It says, "Hands down, you're the greatest dad! Happy Father's Day!" Reiss wrapped it in some paper with the ends still open and set it on his and Milla's toy kitchen. He then waited to give it to James this morning. Too bad he already told Daddy two days ago what he was going to give him. Nonetheless, James reacted with surprise and excitement today when given his gift.

--- We went for a short road trip to Bloomington, a city approximately 45 minutes away from our home. We went to see two sets of aunts and uncles on my mother's side of the family who are currently in town for "mini-college," a week's worth of informational seminars on various topics at Indiana University. One set of relatives are in from Albuquerque, New Mexico and the other calls Clover, South Carolina home. It was really great to see them and unfortunately, we do not see them enough. I know they were disappointed that we could not go have dinner with them but Reiss and Milla were going downhill fast after already having visited for two hours and we are only just now beginning to get a hold on the whole dining-out-with-a-child-who-cannot-sit-still-for-five-minutes-let-alone-an-hour-or-more kind of thing, so long story short, we bid our good-byes and headed for home. They all went out for Indian cuisine and we came home to chicken satay with 100% buckwheat soba noodles and peas. The grilled chicken and peas were leftover from last night's dinner leaving me with only having to cook the soba noodles - for seven minutes, not eight like the package directs. I learned that little tidbit from Kelly over at The Spunky Coconut.

--- Before the visiting with the relatives, we went and bought a cooler and a bunch of ice at the superstore where I do some of our grocery shopping so that we could take it with us to go to another kind of grocery - a natural foods market. The irony that I was buying a cooler at one grocery store so that I could shop at another almost makes me laugh out loud. Actually, I would let out a good chuckle if it weren't for the fact that my children sometimes seem to sleep as light as special forces military personnel.

After purchasing the cooler, we set out on our little roadtrip and then to Bloomingfoods once we arrived in Bloomington. Peppadew peppers, maple sugar, 240 Sweet artisan marshmallows, and Himala Salt were just a few of the wonderful little treats I picked up while there. I have not found Peppadew peppers anywhere locally. Perhaps I could find them and any of the other items if I were to go to Whole Foods but that is a bit of a drive from us as well. The Himala Salt is easy enough to find at my usual health food stores but neither carries the large rock crystals for grinding.

Bloomingfoods was a nice little diversion and I will admit that I'm just plain giddy with my artisan marshmallows and Peppadew peppers (I bought both the red and yellow variety!) but the produce at Bloomingfoods was a bit pricier than I'm used to paying. For example, their organic bananas were $.99/lb. I am accustomed to paying $.69 or $.79 per pound at regular price or $.29-$.49 per pound when they are getting overripe and are marked down.

--- And finally, I was reminded that, on this day one year ago, Reiss had his first seizure.

She Always Says Exactly What I'm Thinking...

And I like how she comes right out and says she is not telling people what to do with their own children and vaccines because that is the same thing I tell others.

Vaccinate or don't vaccinate - it is each parent's choice. All I ask is that people do not make the same mistake I did and blindly trust their pediatricians. Educate yourselves, people!

Do not count on your doctor being informed about vaccines. Ask your doctor how much time was spent in medical school learning about vaccines. You will be surprised. My child's doctor actually told me vaccines do not contain any of the toxins that I now know very well are contained in them.

Just last week, I informed the wife of a pharmaceutical company employee about toxins in vaccines that she said she was told were not in them. If a doctor and a pharmaceutical employee - one who works for a company that does manufacture vaccines - don't even know aluminum, thimerosal, and formaldehyde are in vaccines, then I suspect the average person doesn't know it either or simply chooses not to believe it. And in that case, I invite you to visit the CDC's website and see for yourself what kinds of ingredients are indeed in vaccines.

Part 1.....



Part 2.....

GFCF Hot & Steamy Chocolate Silk

After a particularly cold jaunt to the great outdoors with my never-affected-by-the-freezing-temperatures four-year-old, I was able to persuade him to come in with the promise of getting to assist me with making hot cocoa from scratch.

Never in a million years did I think our attempt at throwing a few ingredients together would result in something so yummy, but the end product was a drink so rich and creamy smooth, it was like drinking chocolate silk. If hot cocoa can possibly be thought of as sexy, this stuff was Robert Redford, Denzel Washington, George Clooney, and Brad Pitt (or whomever floats your boat) all wrapped into a cup of hot and steamy relief from a half-hour spent out in bone-chilling windy tundra-like temperatures. Okay, I'm exaggerating, as usual, but in my defense, it is February. In Indiana. And I am done with winter.

So to cut to it, the following is what we concocted:

4-5 ounces filtered water
4-5 ounces coconut milk (not coconut oil or coconut cream)
2 tablespoons Sun Crystals (or sugar or sweetener of your choice to taste)
3 heaping teaspoons unsweetened cocoa powder
1/2 - 1 teaspoon gluten-free vanilla
dash of salt

Mix the water and coconut milk together in a mug and microwave until desired temp. Mix sweetener of choice, cocoa powder, and salt together in separate small bowl. Mix both mixtures together and stir in vanilla. Stir until all the cocoa powder mixture is blended well into the liquid.

Enjoy!

IEP's, Dinner For Dummies, and Other Ramblings

This evening my husband and I have a meeting to go to regarding the ABA center we are helping another couple get started. Actually, that makes it sound like we are playing some major role in the opening of a fabulous ABA facility but in reality, all we are doing is providing word of mouth to others in the autism community and a place for the couple to hold their presentations to get families interested in their center.

I'm very excited about it all but I'm also very tired. We have been going and going and going for around two weeks now and I just want a nap.

This morning was Reiss's case conference for his IEP and I gotta say, it wasn't nearly as bad as some of the nightmare stories I hear from friends who go in with a "team" of people ready to do battle. Of course, I don't have the same problems many of them have. We do have problems with Reiss running out of the classroom on occasion but luckily, it has not been out the door leading to the parking lot, but rather, the door leading out of his classroom and into the hall. We don't have problems - that I am aware of - with his teacher or aides giving him food that is not on his diet. And since we provide a box of snacks for him from home, they would have no reason to do so. We don't have problems with unfair punishments or have to deal with forms of discipline that some consider torture like so many parents of children with autism have to read about. Yes, it really happens...just look HERE if you don't believe me. By the way, that particular school system is notorious for incidents with their students in special services classrooms. Not long ago they also had one little girl with autism who was bitten in the classroom and force fed. I am, however, too lazy to go dig up a link for that as well though. So have at it, go Google yourself silly if you so desire.

Anyway, the only changes we made were to have Reiss's IEP written to include his dietary guidelines and his Diastat injector - just in case of another seizure - under the Health guidelines section. Because they have been having some behavioral problems in the classroom recently, there were also some behavioral modification plans made to accommodate for when Reiss fully rejects their current form of discipline, which is a combination of popsicle stick pocket pulls, 1-2-3 Magic, and timeouts. It sounds like a lot but it's basically 1-2-3 Magic adapted to a classroom setting. His teacher feels it is only effective for him a small part of the time and we will soon need to move on. It's amazing how this is exactly what she told me usually happens around mid-way through the year with the majority of the children, and although this is a little past midway, she was exactly right.

Moving on...

Today I made muffins. THIS is the recipe I used, as I often do. This recipe should have been more aptly name No-Fail Muffins or Muffins for Morons because it is so darn adaptable. These muffins simply cannot go wrong. They call for applesauce but I have also substituted the applesauce with bananas, zucchini, squash, and pumpkin, all with spectacular results. Today's applesauce sub was zucchini. They're so well-packed with good fats, proteins, and fiber that I don't even have an inkling of remorse serving these for a meal with a little fruit or something on the side. Because we have to get dinner on the table and out the door in a hurry this evening, we are having these muffins, some bacon, and whatever fruit we have on hand. I think there are some pears and apples that need to get gone, as well as some kiwis that Reiss will probably hoard all to himself.

Today we had carpet installed in our bedroom. I know, I know - don't tell me about all the harmful crap they put in that stuff. We purchased this carpet around a year ago when we had just begun making dietary changes, getting chemicals out of the house (we're still working on that one!), and frankly, we were just plain ignorant. If I knew then what I know now, we would have gone with running the wood laminate floors on into the bedroom or gone with a "green" carpet free of chemicals. What's the saying? Hindsight is 20/20 and considering the expense, it's not something we were going to just cut our losses and chalk up to experience.

After nearly a year straight of off and on (a lot of "on") people working on this or that in our house, I am ready to take a break. I am ready to close our doors and not have anyone work for us anytime soon. Ironically, we are getting ready to start our in-home ABA program and there will be people in and out of here every single day and for even more hours than all the remodeling projects put together but at least these are people working on a totally different aspect of our lives and not on our house and leaving messes in their wake when they leave for the day.

Thankfully, you can barely tell anymore that this is a 1974-built house. Other than the main bathroom, every room on this floor has been totally updated or had major modifications made to it to bring it into this decade from a decorative standpoint.

These monkeys are waking up from a nap. Reiss conked out on the chair in here during a phone call I was on earlier and Milla is on the couch. If you have read this far and are not bored to tears, I'm not sure whether to applaud your ability to focus or feel sorrow that you must have a really boring life that you could find my ramblings and my own mundane life ventures entertaining. At any rate, thank you for reading and leave a comment if you feel so inclined - I do read them and very much appreciate them, even if I don't acknowledge them as often as I would like.

And On A More Positive Note....

It felt good to vent a bit on Tuesday but lest anyone think all I do is complain about autism, I figure anyone spending any amount of their time reading my blog deserves to hear some good news as well. You know, to equal things out. Here are some of the breakthroughs we have witnessed with Reiss over the last (nearly) year and a half since we began dietary restrictions and supplements:

Regarding speech......
Although Reiss has been quite verbal since beginning communication with speech as a toddler, his speech wasn't always functional. His speech seemed a tad delayed, then it took off, and then he started losing some of it. At around eighteen months of age, he used to do the cutest thing. He would say, "Awesome!" and do a little fist pump into the air. Soon after, he stopped doing it. As the months passed, this wasn't the only thing he lost, it was simply the most memorable.

Reiss wouldn't talk a whole lot except to repeat things. Engaging in a conversation with him was non-existent. He had a lot of repetitive speech (echolalia). He had pronomial confusion - he confused I, you, me, and the possessive forms as well. For example, he might have said, "You want the waffle." but what he really meant was that he wanted the waffle. He could not answer a simple "yes" or "no" question, nor any type of who, what, when, why, or where questions. And he definitely couldn't ask any questions. At all. We never went through the "Why? Why? Why?" phase with Reiss that most parents complain about with their children during the toddler years.

The way it was explained to us by the special services school officials who evaluated Reiss for entrance into developmental preschool, many of these kids don't even understand that a question is being asked and that a response is expected. It doesn't matter that a typical person changes the inflection when asking a question, children with autism many times just don't understand. And that explains why I used to have to tell Reiss "I need a yes or a no, please." when asking him that type of question. Still, often times, he would reply with whatever pleased him and not necessarily the correct answer. I think he knew I was getting frustrated and he was just as frustrated and figured any answer would shut me up.

If something hurt, Reiss could not tell us it hurt. He could not tell us what happened if something got hurt when we had our heads turned and didn't see him fall or bump his head or stub his toe. One can only imagine how frustrating and heartbreaking it was when Reiss, at 28 months old and on the day before I was scheduled to have a c-section for Milla, hurt his leg going down a slide and couldn't walk. We knew something was wrong with his leg but he couldn't tell us exactly where it hurt. Pointing to things to try to find the source of pain was, well, pointless. We would point to his ankle and ask if it hurt and he would nod his head. We would point to his knee and ask if it hurt and he would nod his head. We would then point to say, his nose and ask if it hurt and once again, he would nod his head. That entire incident was about $3000 worth of medical bills and a leg cast for several weeks, only to be told by the doctors that they were certain his leg was not broken but otherwise, had no clue why he would/could not walk on it. (And people wonder why I have so little faith in the majority of medical professionals. This is only one example of why, but I promise, I'll save that tangent for another day.) Within a few days of getting the cast, Reiss was walking again but still couldn't tell us what hurt.

After only a few weeks of being on a gluten-free, casein-free diet, Reiss's language in terms of functionality grew by leaps and bounds. He was answering questions more and more as the days passed. He seemed to better understand the dynamics of speech and how it could get him what he wanted. There are times when Reiss still has some issues with holding a conversation but he can certainly answer just about any type of question now. "Why" questions seem to be the most difficult for him but he will sometimes make up an answer - even if an illogical one. If it means I get an answer when I ask a question, rather than a blank stare, I'll take it!

Regarding sensory hyper-sensitivity.....
My most vivid memories of Reiss having hyper-sensitive senses are of the many, many months where he would just bawl his little eyes out if the phone rang. The vacuum cleaner seemed to be torturous to him. If a door was closed, not even slammed, the poor little guy was ready to jump out of his skin. He would stare at lights and giggle. Car rides were painful...for everyone involved. A simple ten minute ride from Point A to Point B almost always ended in an hour of trying to console our poor baby. We didn't know then that all of these were exactly what they seemed to be for him: way too much sensory overload for him to handle. I remember a particular family member chastising me for keeping the phone off the hook during naptimes and also for not wanting to go anywhere that required a long (in which, "long" consisted of anything more than fifteen minutes) drive. I was told, "Well, he needs to get used to it!" as if forcing him into these situations of enduring the phone ringing or riding around in the car or whatever else would somehow eventually ease the real pain going on in his little body.

Reiss did begin to very, very slowly outgrow most of these things but still, until we began dietary changes, rides in the car were not fun for anyone and the pain of hearing the vacuum cleaner was just simply too much for him. These days, Reiss loves to run the vacuum cleaner himself. Car rides are much easier, although I cannot say they are much quieter. However, the difference now is that it's a more joyful noise on most occasions.

Regarding sleep.....
Most people don't believe me when I tell them about Reiss's sleeping habits as a baby and on into toddler-hood. Occasionally, even other parents of children with autism don't believe me because sleep was not an issue with their child with ASD. But here it is and it is the honest to God's truth and it takes another parent who has been through it to fully comprehend that it really can be this bad.

Having been in the military and gone through Basic Training, I thought I knew sleep deprivation. Until Reiss came along though, I was clueless. Reiss never slept through the night until he was three-and-a-half years old. No, really, I'm serious - not ever, not even one time. And yes, I'm aware that the so-called experts consider six hours of straight sleep for an infant is considered "sleeping through the night." As a baby and up until he was around nine months old, Reiss would wake every fifteen to forty-five minutes, all through the night. I remember telling people this and they would think I was exaggerating. I always got the ol' "It will get better in a few months." answer. But it didn't get better. And of course they thought I was exaggerating - that simply is not a typical sleep pattern for an infant. But I didn't know that then. Well, I did know that but everyone told me I must be exaggerating so naturally, I just thought that it must be that bad with all infants and I was just being a wimpy new mommy. I also remember thinking that I didn't know why anyone would ever want more than one child. How would they ever get any sleep again?

Around the time Reiss was eight or nine months old and I was nearing the end of my rope due to total and complete sleep deprivation, I decided to let Reiss co-sleep with us. Co-sleeping improved his sleep habits but they were still very poor for a child of nine months. By then, he was still waking just about every hour. There were times when he didn't wake but he would laugh hysterically in his sleep. (You parents of children with autism, you know what I'm talking about and you also know that it probably seemed cute and adorable at one time but is now a nightmare come true if your child still does it.) If I was able to drop-off into a deep sleep for only two hours before he woke, I considered myself extremely lucky.

Reiss's constant waking continued for months and months. And years. He had begun sleeping in a toddler bed but was still waking quite often and many times in a state of ear-piercing screams and was unable to be consoled. Sometimes the "waking" when he was screaming those horrible screams was not him waking, but most likely night terrors, in which he was still technically asleep.

If you don't believe what I told you about Reiss's sleep habits before we began a GFCF (gluten-free, casein-free) diet, you almost certainly won't believe what happened after we began eating this way. The very first night after eating this way for an entire day, Reiss slept through the night, all night, without a single wakeup. I knew this diet was going to be a real pain for us and it created even more challenges of its own (as if we didn't already have enough things working against us), but it was that one thing - Reiss sleeping through the night after three and a half years of life and never having done so even one time - that convinced me that we had to keep on with this diet and at least make an attempt at improving the other troublesome symptoms Reiss exhibited.

Regarding stimming (self-stimulatory behaviors).......
Reiss exhibited many of the stereotypical stimming behaviors in autistic children. He toe-walked. At the time, I didn't know this was one of the signs of autism. Although not to the extent of many children with more severe autism, he flapped his arms. I didn't know that was one of the signs of autism either. He would spin in circles, sometimes with his hands at his sides and at other times, with them held out at shoulder level. I didn't know that was a sign of autism. He would lie on the floor, literally for hours on end rolling a truck back and forth, back and forth (to a point where he would throw a tantrum if we needed to leave the house or transition to doing something besides rolling that darn truck). I didn't know he was stimulating his visual sense by watching the wheels spin. I also didn't know that was another sign of autism. He had to have his shoes on all the time. And I mean all the time - even to bed at night. He would throw a fit if even one drop of water got on his shirt. He would get bent out of shape if his fork and plate sitting in front of him were accidentally bumped and moved just millimeters. All of these quirks, stims - whatever you want to call them - are signs of autism, yet every single one of these behaviors was dismissed as being normal toddler behavior when we brought them to the attention of our family doctor. We would tell our friends and family about our concerns and not once did anyone ever tell us that these are all signs of autism. We were always encouraged to believe these were all normal behaviors for a toddler. But we knew...we just knew something wasn't right.

We began treating Reiss with diet and supplements before he was diagnosed with autism (but WE had known for a long time!). His stimming behaviors began dissipating immediately. Occasionally - but not very often - we will see Reiss spinning in circles but it's a different kind of spinning. I know that sounds strange and I don't know how to explain it, but it's true. We do not see any of the other behaviors on a regular basis anymore. Sometimes Reiss wants to get water on his shirt. Other times he doesn't even want one drop of it near him. But having said that, it's not like it used to be where he was consistent with throwing a tantrum every single time his shirt inadvertantly came into contact with a drop of water.

As you can see from my post on Tuesday, we still have many of the tantrums and undesirable behaviors but we are learning and working and researching and tweaking this way of life of dietary restrictions and supplements, with the help of Reiss's DAN! doctor, to find what works to solve his problems and what does not work for him, as an individual. Overall, I think Reiss has come a long, LONG way in only a little over a year. I know of a few parents who would consider the improvements he has shown as nothing but miraculous. My husband and I accredit all of it to dietary restrictions, supplementation, and DAN! protocol. I hate to think of where we would be and the greater number of frustrations we would have if we had not at least given a try with this method of treatment.

Regarding ATEC Scores.......
I saved this part for last because I can go on and on and on all day long about how well I think Reiss has progressed and how much my husband and I attribute all of that progress to diet and supplements but it means nothing to most people if it's not coming from the mouth of a professional working in the field of autism.

ATEC stands for "Autism Treatment Evaluation Checklist." An ATEC score determines a child's autism severity level. The higher the score, the more severe the autism is in the child. The lower the score, the more mild the autism is in the child. An ATEC score of 180 is the maximum, with the higher scores indicating severe autism in the child. It is only at a score of less than 50 that it is determined the child may have some success of leading a semi-independent life as an adult. At a score of around 30, the chances that the child may grow up to lead an independent become better. Many times when the score drops below 20, the child loses his autism diagnosis and behaves like any typical child.

When we first began seeing a special doctor for Reiss's autism, which was around three months into using dietary intervention and beginning supplements, Reiss's ATEC score was in the mid-eighties - simply put, his autism was moderately severe. I have to wonder how much higher it was before we even began dietary restrictions because I know by three months in, he had already improved quite drastically. Now, close to one year after our first ATEC scoring and almost a year and a half into changing his diet and adding in many supplements, Reiss received an ATEC score of 37 just two weeks ago. If that's not testimony enough as to the success of dietary invention and vitamin supplementation in children with autism, I don't know what is!

I can't wait to get started with ABA therapy as well, as it is one of the only therapies known to have a proven success rate in helping children with autism. It is also the only therapy that is recommended and supported by the Surgeon General (not that that means anything to me, but I'm sure it may mean something to others who are more trusting of those who are in charge of medical policy in this country) in developing abilities in children with ASD.

Do I think our way is the only way? Of course not. All of these children with autism are so different. After all, what may work for one child with autism, may not work for another. But I will say this, every single book and recovery success story I have read in regards to healing children of autism has always involved dietary intervention and ABA therapy. I think we are close to recovery with dietary intervention. I want to be even closer....

Next step, ABA. And it starts next week.

Because ONE Day Would Just Be Too Much To Ask....

I admit it. I envy parents of typical children. I envy how seemingly easy it is for most of them to just pack up the kids, pack up the car, and go out for a day of fun. I envy how they can think nothing of going to a movie their child has wanted to see or a restaurant for a special family dinner or heck, even just to the post office to mail a package.

I feel like my family's life is all about just wanting ONE day of knowing what it's like to have typical children. One day where we don't have to deal with autism. One day where I can look back at the end of the day and think "Wow, this must be what it's like to be a regular family." But apparently, one day like that is just too much to ask because I'm still waiting for it.

Packing up the kids and packing up the car for a day of fun (and I use the term "fun" very loosely because most of these outings for us consist mainly of chaos control and tantrum prevention) does not happen very often for us. Doing so means packing up food that fits our specialized diet, making sure we have enough clothes changes should we have any "accidents" with a child who would probably be potty-trained by this age, if he was a neurotypical. Don't get me wrong...I know it's not his fault he has autism and I do know we are lucky that he is "mostly" potty-trained, considering I have friends whose children with autism are seven, eight, nine years old and older who still wear diapers.

My kids do not watch tv so going to a movie is out of the question. It's not that we do not allow tv viewing in our home, they simply have no interest and no attention span to sit still for watching tv. Ask a typical child who their favorite cartoon character is and immediately they will spout off some silly Disney or Nickelodeon character. Ask my children who their favorite cartoon characters are and they will stare blankly, not even knowing what you're talking about.

Going to a restaurant? Ha! First of all, my children can't eat most of what is served in restaurants and again, there's the won't-sit-still factor. We could take our own food but then we have to talk to the manager of the restaurant. Then there's dealing with Reiss who has that wonderful aspect of autism that involves rigidity to sameness (although he uses this selectively, as you'll read later about fits involving me and giving him what I think he wants at the time) gets bent out of shape if his plate looks any different than Daddy's plate, so James can't really eat the food offered in the restaurant either unless we sit there with the whole restaurant patronage looking at us while our child throws a fit.

Going to the post office isn't impossible but it's no walk in the park. Typically, I try to do this, when needed, when Reiss is in preschool. Until about two months ago, Reiss hadn't even been in a post office for almost two years. I simply didn't want to deal with it.

Am I complaining? Yes, actually, I am and I'm not afraid to admit it. I'm not blaming anyone or blaming my child but yes, I am complaining. I get tired of all the challenges of autism and how it invades every aspect of our entire lives. Although I don't really pay attention anymore to the stares out in public, I do still get tired of them.

I get tired of every single day, nearly every waking moment being a challenge.

I am tired of politicians in high places cutting funds for services (i.e respite care....can I get a "Hell, yeah!" from those of you who know what I'm talking about???) families like mine desperately need and then offloading billions to people who have entered my country illegally. Yeah, I said it!

I am tired of trying what all the behavior "experts" whose clients are parents of typical children say to do for behavior modification and it not working with my child. I wish all these "experts" would walk a day in my shoes and understand that their Supernanny methods, 1-2-3 Magic, positive reinforcement, giving choices, and just about everything else imaginable doesn't always work with children with autism the way they swear it does with typical children. While all those are good methods and we have had limited success with each of them, the fact still remains that children like mine are wired differently. It's not just me saying this - it truly is a fact. Even my child's own preschool teacher understands that none of these methods will work consistently and for very long with a child with autism. So why don't these professionals who are getting paid multiple times more than her seem to get that?

I get tired of being judged for everything - how I handle situations with my children, the way I feed them, the treatments I choose to work towards recovering my children from autism, and on and on and on. Just this morning I was speaking with another mom of two boys with autism who told me her extended family swears that her sons' improvements towards recovery have nothing to do with the biomedical treatments (that are, coincidentally, very similar to the ones we use) she has been doing, but rather, her sons are simply "outgrowing" their autism. I wasn't sure whether to laugh or cry because we - my husband and I - have both heard things along the same lines.....

"Oh, it looks like Reiss is really starting to outgrow this..."

and

"Just give it a few years and he'll outgrow it."

I am tired of nearly every encounter with my child being a struggle. Reiss may want his pancake cut up today and then throw a ten-minute tantrum tomorrow because I cut it up. This evening I may give him a fork at dinner and then have to listen to him have a meltdown about "Why'd ya' give me a fork, Mommy?" when just yesterday he wondered why I didn't give him a fork. It's like no matter what I do, I have to think about my actions before doing them and recall what it was that made Reiss happy in the same situation ten minutes ago or this morning or yesterday and then recreate whatever made him happy, only to be met with a tantrum because this time he wanted it differently......again. Ignorant people call this being bratty. In my children, it's autism.

Yes, I'm complaining. And yes, I hate autism. And yes, I hate living in a world that's not made for people like me or my children. And yes, I am having a bad day. Yes, I would love to be one of those mothers of children with autism who just puts on a happy face all the time but that's not me. And honestly, I have a feeling that it's not really how those moms feel either......they just save their unhappiness for more private moments. I don't know of a single mom who will say they love autism or the challenges it creates.

I'm done....that's all, folks. Back to the grind and tantrums and challenges and endless paperwork for services for my children and therapies and phone calls to therapists and finding a babysitter who truly "gets" it and finding that magic combo that will save me my sanity improve my child's well-being.....

Mysterious Milla Meltdowns Mean No Mommy Break For Me

On the second Thursday of every month (except December!) there is a women's church group meeting, called Elizabeth Ministry Gathering, that meets at the church of a few of my other mommy friends. Typically, I try to go to the meeting but have been very sporadic in those efforts the last several months. One of my goals (I'm not calling them resolutions because many of them are not "fixing" anything, but rather, efforts to simply do better in particular aspects of my life.) for 2010 is to get out more amongst other moms and also to try and attend each month's EM Gathering. I keep telling myself I need these Mommy Timeouts.

I made it to January's EM Gathering and was well on my way to making it to this evening's meeting too until a few minutes before I planned to shovel my dinner in and make my way out the door. That is when the Mysterious Milla Meltdown occurred.

Milla has meltdowns all the time (yes, I know, two-year-olds do that - so save me the "That's-totally-normal" lecture, please.) so the fact that she was having a meltdown was not out of the ordinary at all. What was strange though, was how she was conducting her tantrum. A few minutes before dinner was ready, she walked her little shirtless self into the laundry room, left the light in there turned off, closed the door, and sat down on the floor. A few minutes later she started screaming and crying. I made an attempt to go comfort her and try to bring her out but she was having none of it. She screamed when I turned the light on. She flailed when I tried to pick her up. She was not coming out of there. So I left and continued with cooking dinner.

A few minutes later, same scene, different position. Milla had gone from sitting on the floor to lying down on the cold tile floor. Let's not forget she was shirtless too, so I know she had to be cold because the laundry room connects to the door going to the garage and it gets cold, cold, cold in there.

She screamed to have the light turned off when I turned it on. She screamed answers to all my questions:

Me: Do you want anything?
Milla: NO!!!!

Me: Are you hungry?
Milla: NO!!!!

Me: Do you want to eat dinner?
Milla: NO!!!!

Me: Do you want the light on or off?
Milla: Light OOOOOOOFFFFFFFF!!!!

So I left her in there again. She would not come out for dinner. James, Reiss, and I all ate dinner without her while she sat in there letting out an occasional wail for goodness knows what reason. She didn't want to eat and we did ask several times while we, ourselves, sat, eating our own dinner.

Meanwhile, it was getting closer and closer to the time when I needed to leave to go to my EM meeting but I still planned on going. But the nervous mommy in me set in and the fear of all the "what if" scenarios would not stop nagging me. So I stayed home.

Just before all this happened, Milla had eaten part of a sucker given to her from Reiss's and her occupational therapist. Normally, we do not allow artificial dyes or flavors and we try to stay away from soy. While we are not as stringent with these things like we are with gluten and casein, we do allow exceptions occasionally. This sucker had all three of those things in it - red dye, artificial flavoring, and soy lecithin.

Now I know for people who are not familiar with this diet we are on, or for those who do know about it but do not put a whole lot of stock in it, it may sound ridiculous and downright paranoid of me to think that a little sucker would cause such a reaction in a child - or more specifically, my child. However, I have observed enough of my own kids' reactions to different foods to know that yes, something as trivial as a few licks on a Valentine's sucker can indeed induce such a reaction with one of my children.

Before I even allowed the occupational therapist to give Reiss or Milla the suckers, she volunteered the bag upfront so that I could check out the ingredients list. The list didn't have any glutenous or casein-containing ingredients on it so I said "what the heck" and made an exception, all while hearing that little voice inside tell me I shouldn't.

Next time I will listen to that little voice and maybe, just maybe, listening will result in Mommy getting a break that evening.

Lesson learned: Listen to the voices in your head.