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.....

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.

Happy Belated Blogiversary To Me!

And to celebrate, I am doing another giveaway!

It was around this time last year that I began blogging about my family's life, the challenges of having a child with autism, and on many occasions, about nothing in particular. In the year that has passed, I have read several books on autism, treatments for it, and the stories of other parents and their trials in raising a child with autism. Some of the books have been so-so. Others I finished with an attitude of wanting to change the world, or at the very least, make it a much better place for my child and his needs.

The book that has captivated my attention and influenced me like no other is A Child's Journey Out of Autism by Leeann Whiffen. Although it is a story about one particular family's journey into and out of autism - and not a reference book for treatment options like many others I have read - it is definitely a book I know I will refer back to quite often for years to come.

With that said, I am offering a new copy (not mine! Mine is dog-eared and highlighted and well-loved.) of A Child's Journey Out of Autism as a blogiversary gift from me to whomever wins.

To enter this giveaway, please read carefully:

1. Giveaway entries will be received by emailing your street address and blog address to pnewlin@prodigy.net by January 31st. Entries received after January 31st will not be valid.
2. Please put "Blog Giveaway" in the subject line of your message.
3. If you would like to increase your chance of winning by receiving two entries into the giveaway, please leave a comment on this post in addition to sending an email to me.

Monday Messes

My day began by cleaning up spilled apple juice that I had poured into a "cup without a lid" and given to Reiss during breakfast. He reached for it to take a drink, somehow missed, and that was how we got Monday Mess #1.

Immediately following the cleanup of the overturned apple juice, Milla was asking (I'm so nice to call it "asking" - it was more like whining at a fever pitch) for some milk. So I got the foil-pack carton of Almond Breeze out of the refrigerator, started to shake it, and next thing I knew I was being showered with almond milk. As was the entire westside of my kitchen. Monday Mess #2 was born.

Reiss finished breakfast and went off to play in the master bathroom with a - unbeknownst to me at the time - toy aquarium. He filled it with water and came walking down the hall asking, "Mommy, why's this thang got water coming out?" That is not a typo. He really does say "thang."

Well, Reiss that would be because it's a toy aquarium, not something we actually fill with water. Monday Mess #3 made its appearance and in a grand way, all the way down the hall, through the bedroom all over the carpet in there, and on into the bathroom where a puddle approximately the size of Lake Michigan awaited my maiden skills and already sopping wet towel I was scooting down the hall with to clean up.

After removing the aquarium from the bathroom and establishing a new rule: No filling toy aquariums with water - I returned to the kitchen to find Milla and Monday Mess #4. Milla had turned her cup of apple juice over as well. All this action before 8:30 am. Do I know how to live it up or what?

I suppose it's a good thing I don't give them very much juice when they have cups without lids.

So why don't I just give them cups with lids? I could. And I could also listen to them tantrum themselves into a tizzy for a few minutes. I'll take cleaning up a mess now and then over a tantrum anyday. Honestly though, I can handle the tantrums. There is more to my excuse for giving them cups without lids and it includes having teachers in preschools who prefer to have them able to drink with a regular cup when they begin attendance. They also asked me at Milla's IFSP evaluation last week if she can drink from a cup without a lid so I guess that is something that is expected of a two-year-old??

I don't know. You tell me. I don't even know what "normal" behavior is anymore so I don't know what to expect.

Monday Mess # 5 came this afternoon within five minutes of Reiss and I throwing a big party for him having pooped and peed on the potty. It was naptime for Milla and Reiss had just finished eating his reward treat for pooping on the potty. He left the kitchen, then returned five minutes later, and told me he had poop in his pants.

Seriously???

So much for rewards. His reward this time was a diaper. Not a disposable pull-up. A regular old Huggies tearaway-tabs-on-the-side diaper. And he didn't even mind.

Reiss has been pooping in his pants several times the last few days and yesterday we told him if he did it again, he was going to wear a diaper. He wanted no part of the diaper scene again and threw a fit simply by the mention of him wearing a diaper. Today, he didn't care.

Really, I don't know how I am supposed to potty-train a child who doesn't even care. Why, oh why, does everything have to be so difficult? Just as I start to get comfortable in anything and thinking, hey, this ain't so bad, a monkey wrench gets thrown in. It almost never fails.

I really do try to stay positive with having a child with autism but it's so hard when nearly every aspect of every day is difficult in some way. And before I get the people coming out of the woodwork telling me:

"He's four. What do you expect?"
"These things happen sometimes."
"Oh, that's normal. He'll be potty-trained before you know it."

Or any other attempts to make me see that this has nothing to do with autism, let it be known that I'm not saying Reiss is not potty-trained because he is autistic. Although, I do think that plays a part at the very root of the problem - even our DAN! doctor has given us information pointing to that regard. But it has to do with gut and bowel issues and is not something average people who don't spend nearly every spare moment away from their children reading about the science behind autism would find interesting.

And I'm not saying Reiss does everything he does because he is autistic. What I am saying though, is that there are a lot of things Reiss does because he is four years old and is a boy and then there are also a lotta lot of things he does because he is autistic. When you add them together, the sum can be some extremely difficult days to handle. Frankly, it's exhausting. I want those carefree fun kind of days so many other people get to enjoy.

Speaking of carefree fun...We went outside in the freezing cold weather today so I could pull these monkeys around on the sleds. While Reiss waited on Milla to be pulled, he whined that he wanted her sled, which is for babies and too small even for her. While Reiss was being pulled in the baby sled, Milla was crying loud enough for the neighbors three streets over to hear her. Regardless...I pulled them around like a pack mule and tried to make it fun for them. I don't know if it was just their moods or just too cold but they didn't seem happy and then Reiss wanted to come back inside.

And that was about as carefree as we got today. Oh wait, I did let them empty out nearly a full bottle of glue on pieces of construction paper while I loaded the dishwasher. No, that is not my idea of a craft. They were supposed to be making snowmen from craft pom-poms and glue on paper. Instead, they just sat and watched as the glue streamed out of the bottle on their sheets of paper. But I got the dishwasher loaded and that was an accomplishment.

Here's to hoping Tuesday is more carefree and less messy.....

Things Are Better Than I Make Them Sound

First things, first.

Celeste Jean, if you are reading, I have emailed you to request your mailing address for your Betty Crocker prize pack to be sent to you. If you're like me, you may get a lotta, lot of email and perhaps did not see my message, so I wanted to bring it to your attention on here.

We did not get to do the adorable marshmallow craft pictured below this morning because I am a slacker mommy. I was going to go to the craft store last night to get the styrofoam ring to make it and noticed that I didn't have any marshmallows either. I could have just sworn I had a bag of the large kind in the pantry but alas, none, and I didn't want to make two separate stops last night. So, going to the craft store and getting marshmallows at the grocery are both on the list of to-do errands this weekend. Maybe we can save this project for a craft-time activity for Monday.

This week has been a challenging week. Dealing with this autism thing day in and day out, one would think I would get used to some of the more annoying behaviors and just let them roll off - and really, sometimes I do.

However, this week and over the past two or three weeks now I have heard the question "What's gonna happen if I close the gate while I'm on the brown?" probably no less than 422,000 times. See, Reiss knows how to open the gate at the top of the stairs but we keep it there so that Milla doesn't fall down the stairs. Reiss is welcome to let himself through the gate and to the stairs going to the basement whenever he wants. Too often though, he will open the gate, stand on the top step (which is brown, hence, "the brown") and try to close the gate behind him, all while asking that question....the question that I am just certain if I hear it one more time, steam will come barreling out of my ears or nose or mouth or all three combined.

When I tried to express my frustration on facebook about this, I got the typical phrase all parents of children with autism just love to hear: "Oh, that's normal. All kids do that." Well, that wasn't exactly what was told to me but that was the jist of it and any parent in this position knows that this kind of behavior is not normal. If I had a dime for every time I've heard the "All kids do that....blah, blah, blah." Whatever....come walk in my shoes for a day and you will know what I'm talking about.

Yes, all typical kids will ask questions over and over. For example, "Can I have ________, please? Pleeeeeaaaase? I promise, promise, promise I'll be good." And that's what the parent may hear several times in one day. If you're one of these people, seriously, tell me, when was the last time your typical child asked you the same question three-hundred, four-hundred, or even more times in one day? And yes, I am being literal. Those numbers are no exaggeration.

If I sound like I'm complaining, well, maybe I am and this is my blog so I'll do what I want. Call it what you will but I have the right just like anyone else to vent now and then. And don't even get me started on the petty little complaints on some of my facebook friends' pages to the likes of "Oh, poor me. I'm so tired. I need a nap." from people who don't even have kids, much less a kid with autism. I really just want to tell them to suck it up and that they don't know the first thing about exhaustion. Ask any parent about exhaustion and I bet close to 100% will say they never knew the true meaning of exhaustion until they had kids. And that's saying a lot coming from me, someone who was in the military, someone who knows what it's like to get up at 4am, go to PT and then train all day long for an eighteen to twenty hour day.

Blah, blah, blah.....blah.....blah, blah, blah!!!

Yes, I am very frustrated this week.

Guess what Milla's thing is right now? She likes to take her pull-up off and get a new one every few minutes. By 11 am this morning, she had changed her pull-up no less than fifteen times. Keep in mind, that is only about two hours that she had time to do it too, because she woke up a little before 8am and her speech therapist was here for an hour. She did not pull off her pull-up any while the ST was here so that only leaves about two hours - or an average of a new pull-up about every eight minutes. Good times.......

On a more positive note, we are going to have breakfast with Santa this weekend. We have to take our own food, because although it is sponsored by an autism support group, many of the parents do not use any special diets for treating their child's autism and the food there will be traditional fare, almost certain to contain all kinds of gluten and casein. I am happy to have friends who also eat gluten-free and casein-free who will be in attendance. There's nothing I hate more than being the freaks wherever we go because we don't eat things others do. I'm starting to think this must be how people feel who eat a raw diet or vegan or both.

It will also be interesting to see the kids' reactions to Santa and if they will go near him. Hopefully, I will not forget the camera. Let's hope I have something pleasant to photograph.

And another positive....Reiss pooped on the potty last night!!! Something that has not happened much as of late. Just when we think we have his "currency" figured out to bribe him to poop on the potty, he switches things up on us and his currency turns to something else that we can't figure out and the old currency is worthless. Right now, chocolate candy bars are out. "Bugs" are in. Bugs are gummy fruit snacks, such as the Betty Crocker Create-a-Bug snacks I recently reviewed. We also buy the Annie's bunnies, but wow, are they expensive!

Well, I'm sure no one came here to read me complain about everything under the sun and since I'm not having the greatest week or looking at things with the best perspective....Toodles!

Until next time...

Alec's Journey

Today has been a bad, bad day and as a mommy who is having a serious "autism day," this video gives me hope.........

Alec's Journey

Invitation to Plug Your Fave Book/Website

Between dealing with a home remodel project under the supervision of the world's slowest contractor, my growing dissatisfaction with Reiss' progress (yes, I DO indeed recognize this is not his fault!), and everything else going on, I am getting more and more frustrated with eating a gluten-free, casein-free diet and not being able to get a break from cooking and dishes. I'm tired of the same old fare I seem to be rotating in an organized fashion.

So with all that said, please share (in the comments section) your favorite book or website that caters to gluten-free - and casein-free, if possible! - recipes and cooking.

And I hate to have to give this little disclaimer but there are the few who ruin it for the many: Any website postings meant to be advertisements for any products or services unrelated to gluten-free dieting will be deleted.

Post away, people!!! Pleeeeeaaaaasssee, post away!

Woohoo!!! Organic GFCF Chocolate for Cheap!

Endangered Species Chocolate

If you or someone in your family eats a gluten and dairy free diet, you are probably all too familiar with the high price of getting a chocolate fix in the form of a candy bar. Right now, Endangered Species is offering their organic 1.4 ounce bars at an incredibly low price of only $0.49! If that alone doesn't set off your Woohoo Meter, consider the fact that most candy bars that fit into the category of GFCF usually cost at least $2 and aren't even made from organic ingredients.

So you can save some money, stick to your dietary restrictions*, and feel good that "10% of net profits (are) donated to help support species, habitat, and humanity."

By the way, I am not being compensated in any way for this plug for Endangered Species.....I saw a good deal and thought I would pass it on to others. If anyone is in the same boat my husband and I are in, you can sympathize with needing a good deal when it comes to providing a candy bar bribe for a poop on the potty (versus in the pants!) by a four-year-old. :)

*Only the dark chocolate bars are gluten and dairy free.

Join Me on Facebook for Biomedical Discussions!

This is just a quick heads up to all my bloggie world friends that a few friends and I have created a facebook group called DAN!/Biomedical Parents. If you are interested in joining, the aforementioned boldface words are the exact words you will want to search for when on facebook.

The intent of the group is for those who are using the DAN! protocol or those who are interested in learning more about it to discuss issues relating to the protocol and other biomedical treatment methods used in treating individuals with ASD's.

Here is the fine print, per se. And I hate to have to say it but unfortunately, as my friends and I have found in the past, it is necessary: Currently, the group is set as "open," making it available for any facebook member anywhere in the world to join. If problems should arise with any member or members causing trouble (bashing, criticizing treatment choices of other members, etc.), said members will be booted from the group and the group will be reset as "secret." In the event that the group is changed to secret mode, it will not be searchable on facebook and membership will be by invitation only.

Come join us on facebook and give us an introduction! I look forward to "meeting" all of you!

A (Nearly) Perfect Autumn Day

Today we went to a birthday party for a little boy who is our neighbor and a very good friend. In the last three and a half years, even before the little guy came along, James and I have really gotten to know his mother and father and they are awesome people. By the way, if you click on the link on the right for "The Wellness Philosophy," that is our neighbor's blossoming business.

The birthday party for our little friend was held at a park fairly close to our house. We have been there one other time and didn't think much of it but obviously it was because we did not walk around a whole lot while there. When we went today, we found there was a bridge over a stream that led to what must be miles and miles of cleared away and paved trails. It was an unbelievable surprise, to say the least.

At one point, I was walking along one of the trails with Milla while Reiss and James were over in the playground area and, with all the colorful leaves falling all around us and just being in the middle of it all, it felt like a little slice of Heaven. Being back there surrounded by all the color and beauty of the environment, one would never guess there is the hustle and bustle of a very busy commercial area close by and a very well-travelled street right outside the park's gates. It was refreshing and relaxing and I could have kicked myself for forgetting to bring the camera. The setting provided a perfect opportunity for one of those kinds of photos where a child is pictured from the back wondering amidst falling leaves and those already on the ground. Grrrr! Maybe next week.....

Our neighbor, who has shown great interest in the biomedical treatments we use in treating Reiss' autism, attended one of the DAN! conferences and is now a practicing provider in the DAN! protocol. Because she is so aware of the importance of our GFCF diet, she made a cake especially for us to eat at her own son's birthday party! How cool is that? And although I told her to please do not do anything special for us, I have to admit, that is a true friend!

There were several children at the party and we all played on the playground equipment and walked around (making certain to avoid a very large, very disrespectful pile of dog poo someone failed to dispose of - seriously...what is wrong with people?) and talked and it was just great fun.

There was one time when Milla was making her way up the steps to the slide and I had to seriously restrain myself and now I wish I hadn't but who knows what the consequences would have been had I opened my mouth. Anyway, there was a little girl of about four years old who was trying to get past Milla rather than wait her turn. Her father kept telling her to wait her turn and she kept on trying to get past Milla and the father grabbed her on her chest (like one of her breasts) and squeezed and very angrily told her to wait her turn. She let out a little wail and, although I did see it happen, I didn't need to see it happen to know by her wailing that it hurt pretty badly. Call me a wimp and call me a stereotyper, but I kept my mouth shut because all his tattoos running up and down his arms scared the crap out of me. Now I'm wishing I would have said something....poor little girl. If he does that out in public, I don't even want to think what happens at home when she does something he disapproves of. (SIGH!)

The child abuser was the worst part of my afternoon. Otherwise, things were mostly ideal. The kids played fuss-free for nearly two hours. They were very happy and having fun and probably would have played even longer without any fits but Milla was getting tired and naptime was approaching, so we left. Milla was worn out and was asleep in her carseat as we approached our house.

It doesn't sound like a particularly spectacular day but it was a great Autumn day and one I will remember for a long time.

Blah, blah, blah, blah, and BLAH....

This morning when I picked up Reiss from preschool he asked me, "Why'd you have to pull a stick?" Again, if you're a newbie here this is Reiss' way of asking "Why did I have to pull a stick?" And the sticks he is talking about are the popsicle sticks on the disciplinary chart at school.

I'm not privy to all the fine details of the "stick" system at school (or work, as Reiss calls it) but I think it boils down to their form of 1-2-3 Magic. It looks like they start out with three sticks and the child pulls one when they do something wrong. I don't know.....I figured I would wait until things have calmed down from all the new-ness of the new school year and then bombard the teacher with all my questions. You know, just as she is feeling like she can relax.

Monday evening Reiss and James made brownies together. They used one of the Betty Crocker gluten-free mixes we received from BlogSpark. I've got a ton of pictures from the mess that evening but have not downloaded or uploaded (or whatever!) them onto the computer. After the brownies cooled a bit, we frosted them with some leftover frosting I made for a cake last week.

Yesterday, as I was trying to do some dinner prep in the morning, I scorched the brownies to a crisp. The pan of brownies was sitting with foil on it on one of the back burners on the stovetop. I needed to use that burner and moved the brownies to the front burner and then turned on - what I thought was - the back burner on "High." But no, it was the front burner where the brownies were sitting and I soon began to hear a sizzle accompanied by a nice aroma of charred brownies. It wasn't pretty....at all. Actually, it was so bad that I threw the pan away - and that was after letting it soak for awhile. This is a big thing because I don't throw anything away unless it really cannot be used again. I even told my husband as I was carrying it to the trash can, "Watch this because you won't see it very often." Even knowing me as long as he has, I can still shock him.

We are getting ready to get a new bathroom in our master bedroom. This was something I really didn't want to do until next year or the year after. However, as is almost always the case, our house had other plans. Our shower took a turn for the worse and started leaking water through cracks in the tile walls and into the ceiling of the finished part of our basement. We could just repair the damage. Or we could spend a little more and get a new shower. Or we could even spend a lot more and get a new bathroom. Woohoo.....what can I say.....things never happen as we plan for them to and I'd rather get it all out of the way now than do one thing now and then have construction people back again in another year or two.

In other areas of our lives......I think I mentioned awhile back that Reiss is now getting B12 shots. We are to give them to him every three days. I am so proud of my husband or maybe I should clarify and say that I am so thankful for my husband in that he has taken on this duty with gusto. I have not had to give Reiss a single shot. And speaking of Reiss, he has taken it like a big boy. He loves "pokey time" as he calls it.....I just hope he doesn't ever say this very loudly out in public. Goodness only knows what people will assume he is referring to.

Anyhooo.....

Since this is just a random post, I'll just add this in here. I don't watch "Jon & Kate Plus 8" anymore because it's just become so darn depressing but sometimes it comes on after another show is playing and I'll hear the beginning of it. Am I the only one who wants to vomit every time I here the part in the opening of it where Jon says, "We're a family and we're in this together." Yeah......before you decided to go dropping your pants all over the place. Seriously..........

I don't have much time to write today but wanted to share something written by another spectrum parent. Maryann's (the writer) feelings reflect almost the exact same way I've been feeling off and on for the last few weeks in regards to all these darn dietary restrictions, treatments, and supplements my husband and I have to deal with every single day.

Matthew's Puzzle

Although Reiss does not and has not faced some of the more extreme obstacles Maryann's son has faced, I can so feel her pain. There are days when I don't even want to get out of bed. There are days when the pain of seeing other people and their typical children interacting with one another and other children is so emotionally painful I want to go up to the parent and ask, "Do you know how lucky you really are?"

Somebody, Please Put "M.D." by My Name!

Last night, I opened my email inbox to find a wonderful and most unexpected message. After a spectacularly craptastic weekend endured waiting for Reiss to dislodge seven days worth of waste, I was on the verge of coming on here to let it all out and write a tale of my woes. But before doing so, I checked to see if I had any new email messages.

A little background.....

A few weeks back, my husband was listening to a local radio station on his way to work when they were discussing the swine flu vaccination and taking caller comments. Several people on both sides of the argument - to get the vax or not to get the vax - were calling in, many of whom were doctors and professionals working in the medical industry.

A few doctors (as in, with M.D. beside their last names) actually called in to say that much of the general population was misinformed about the vaccine and that it does not contain thimerosal (that's big pharma speak for mercury, folks!). While there will be a thimerosal-free version, to say that is does not contain thimerosal is far from telling the entire truth and is most certainly a disservice to any listeners who most likely will not do their own research - a.k.a. the vast majority of people. The reality of the swine flu vaccine situation is that anyone in the general population receiving the vaccine will get a thimerosal-containing version unless he or she specifically asks to receive the thimerosal-free version. Such exclusion of details by these "professionals" just seems to be another example of the extreme ignorance being displayed in the medical field way too often these days. It serves only one purpose - in my opinion - to make me question what other more important things are doctors not entirely educated in? Things that more directly affect me other than just vaccines?

A few other professionals, were calling in to argue that we, as a population, are over-vaccinating. One particular individual, a naturopathic doctor, I contacted myself, and we had a lengthy conversation - one that left me feeling more informed when we hung up and about which I think she felt the same. Interestingly, she has been practicing natural recovery for children with ADHD and autism for several years but had never heard of DAN! until I made mention of it to her. I strongly encouraged her to become DAN! certified, as Indiana could definitely use more providers practicing this treatment protocol.

Aghast as I was when my husband informed me of the comments of the very misinformed doctors, I knew I had to write to the radio show hosts. I tried to sound as informed and diplomatic as possible, yet passionate and knowledgeable as I provided proof of my argument. A few weeks past and then last night I received an invitation to be an in-studio guest in the near future to discuss vaccines. As of now, I do not have a date but am eagerly, excitedly, and nervously looking forward to this opportunity.

As for the information I provided regarding the vaccines, it can be found on Age of Autism and on the ABC News websites.

Hmmmm....Our doctors are saying there is no mercury in this H1N1 swine flu vax. Surely they can't be wrong....can they? Really? Isn't it strange that thiomersal (known as "thimerosal" in the United States) is listed right there on the bottle???

Seriously, it gets old being more informed about vaccines than the doctors doling them out (and making way more money than my family to do so!).........

Dear Centers for Disease Control

Originally, I found this over on Matthew's Puzzle. It gave me such a laugh I couldn't help but post it to my own blog. I worked and worked to make it fit and still be a large enough print for the average person to read....Alas, I am not a techno geek. For a larger image, click on it and ENJOY!!!

What a Whirlwind of a Weekend!

Happy Birthday to Reiss!!!
He is four years old today.

This past weekend came and went and happened nothing at all like I had envisioned it would in the weeks leading up to it. Well, Friday was much like I thought it would be, if not better, but the rest of the weekend was literally life-changing.

Friday evening we met up with my favorite aunt and uncle who came for a visit from Albuquerque, New Mexico. My aunt is that one person I think of when I think about who I'd like to be like when I grow up. Well, I can aspire, but I'm afraid she will always trump me in her ability to make everyone around her feel special.

My aunt, uncle, sister, sister's boyfriend, my nephew, and my family met at a park that we have gone to for three years now for this annual gathering. My uncle, who is great with kids, got Milla to warm up to him in no time. She's a little daredevil and it's a darn good thing my uncle - who is 70-some years old - is in as great shape as he is because she definitely had him chasing after her.

My uncle is simply an amazing man. Really, there is no other word for it. He is still working the same job he started at fresh out of college over forty years ago and he bikes to work every day. I'm not sure of the distance of his two-wheeled commute but it's not some piddly ride down the street. And it's in Albuquerque no less - so we're not talking about some drab, flat-as-a-board terrain here like Indiana tends to be.

My uncle helping Milla off the big kid slide at the park.

Reiss holding the camera case and "taking a picture of Daddy."

Reiss climbing the rock wall at the park playground. Who says children with autism have poor muscle strength??? To be honest, he is slightly delayed in his physical agility but he is much less apprehensive than he used to be when playing on playground equipment.

This is the same playground where Reiss received a mysterious leg injury the day before Milla was born. I say "mysterious" because he could not walk after going down the slide and having his shoe skid on the side of it, yet doctors could not find anything wrong by x-ray. Finally, they ruled it to be a sprain but we will never know for certain.

My uncle helping Milla at the top of the big kid slide.

Our visit with my aunt and uncle was awesome, as always. We definitely do not see enough of them and I hate it but what can ya' do?

Saturday morning started out like every other Saturday in our home. We had Pancake Saturday and Reiss helped James make our special GFCF pancakes.

Saturday was my dad's birthday. He and I do not have the best relationship in the world but I will give him credit, he does seem to be making more of an effort to make amends in recent days. He called Saturday morning to see if we would like to go to a dinner my step-brother was having for him. I told him we would maybe stop by but things were really busy and I totally forgot that we had discussed going with our neighbors to the church's Saturday evening casual service.

Saturday afternoon we had just gotten naps for Reiss and Milla started when Reiss came out and told James he needed to go pee. He sat on the potty in the bathroom with Daddy and started making noises with his mouth. James asked him if he needed a drink and he said he did, so James went and got him a cup of juice. He took a drink and then our lives changed. He started flinching, so James took him and put him in his bed. While all this was going on, I was lying in bed with Milla while she slept.

James came and got me and said something was wrong with Reiss. When I got in there, his eyes were looking to his right side. I picked him up and tried to get him to talk. He said, "I know, I know, I know, I know..." And then nothing. Reiss has never had a seizure before but I knew almost immediately when I saw his eyes going off to the right that he was seizing.

James grabbed Reiss and I got Milla and we headed for the hospital, which thankfully, is very close to our house. We ran stoplights, honked the horn almost non-stop, and at one point, even gave someone a yard job (in order to get past some people who had gotten in a fender bender) all in order to get to the hospital. By the time we got there, Reiss was not conscious and my heart was pounding.

Reiss seized for an "unusually long time" as we were told by the emergency room staff. I've never felt my heart breaking so entirely so quickly. I hate to think what could have been had we not recognized the level of seriousness of the situation or had we - God forbid - gotten in an accident ourselves on the way to the hospital. Or had we even called 911 and waited on an ambulance, rather than drive ourselves. Time really was of the essence here and none of it could be wasted waiting on others.

Without giving the minute details of the entire situation, suffice it to say that James did not have the best Father's Day.

Today is Reiss' birthday. Our big boy is four years old. Today has not been the ideal day of what I had planned for his birthday. Originally, we were going to take Reiss to an indoor waterslide park until I researched a few of them in the area, only to learn that Reiss does not meet the height requirement for getting on the waterslides. He could have played in the toddler area but when we factored in the cost and the limited attractions he would be allowed to play on, we decided perhaps next year would be a better time to take him to such a place.

We then decided to take Reiss to a part of downtown Indianapolis that has been restored to serve as a family-oriented tourist attraction. Indianapolis has an old canal that runs partially through the city. We were going to take Reiss to walk along the canal and go for a gondola or paddle boat ride. Saturday evening I was going to make Reiss a special gluten-free, casein-free cake that would serve as his birthday cake.

None of the plans I had happened.

Yesterday, Reiss was unable to walk on his own. His speech was slurred. He was so tired and cranky from the physically draining seizure ordeal, all the medications pumped into his little body, and lack of sleep that he cried almost non-stop Saturday evening and Sunday. In the wee hours of Sunday morning, Reiss was still awake until 3:30am, when we finally okayed the administration of Benadryl to relax him. They would not sedate him and they do not use or approve of our natural method of using melatonin in aiding sleep. We didn't really want them to sedate him or use Benadryl to get him to sleep but he was not going to go to sleep any other way. Total and complete exhaustion was not making him fall asleep.

Fortunately, Reiss is doing much better today. James stayed home from work as a precaution though. Reiss is walking fine, talking fine, and with the exception of being a bit more hyper than his normal self, he is back to being the Reiss we know and love.

D*#@ the CDC!!!

Thanks to Ginger, writer of Adventures In Autism, I found an interesting article regarding autism, the medical community, and health insurance providers. You can read the full article HERE. For Ginger's blog and her take on the article, go HERE.

The article itself is likely an eye-opener for anyone who is unaffected by autism in some way and/or is unfamiliar with the red tape families who are affected by autism must wade through when it comes to insurance companies and their policy coverage for autism-related treatments and therapies.

That said, what struck me most about the article was not the ridiculous stance insurance companies take regarding coverage (or lack thereof) for autism-related charges, as this comes as no shock to me having incurred way more out-of-pocket medical expenses than any family should ever have to face. No, the slap in the face I felt was a result of two statements contained within the article that were made by Catherine Rice, Director of the CDC's National Center for Birth Defects:

"Studies have linked autism to air pollutants, pesticides, pet medications and even drugs used in the birthing process, such as Pitosin."

“It could be anything from the exposures in our physical surroundings — chemicals around us in homes, clothes, products, medications we take and food we eat”

Rice is quoted in the article admitting to studies having linked autism to birthing drugs and then goes on further to say that it (the cause) could be linked to anything - including medications we take.

Besides myself, does anyone see the complete irony here? Autism can be caused by birthing drugs or even something as simple as medications we take....yet, it is such a stretch for the CDC to admit that vaccines could play a role in the onset of autism as well.

GRRRRRR!!!! This angers me so intensely...Seriously. I could have gone without reading that article today. Nonetheless, thank you, Ginger for all your digging in order to help keep our community of autism-affected families well-informed.

How Do You See This Blog?

Allow me to preface this post with a very appreciative thank you to all the people who read this blog and offer supportive comments, tips regarding "What worked for my child...," encouragement, insight, and - most important - an understanding attitude from parents of typical children and children with autism.

When I began writing this blog in January, the purpose was for me to keep track of progresses, failures, learning experiences - for our entire family, not just ones experienced by Reiss, and to tell of my life experiences, in general, as I live it. Although my family's life is impacted by autism every single day, it is not what defines our lives. Just like anyone in the world, we have our good days and we have our bad days. Some days autism seems like the big smelly elephant in the room paying us a visit. Other days it feels like we are as close to a "typical" family as we can get. I write about about good days, bad days, and things totally unrelated to autism.

The reason I am posting on here today is because it has come to my attention by two people who are *supposed* to be very near and dear to me that my blog reflects a "Gloom and Doom" image. One of the mentioned persons admitted to only reading my blog once or twice and still had the audacity to point out only one specific instance where I wrote about a particularly bad day we were having. Honestly, I thought it was obvious by many of the posts that this blog is not meant to be all gloom and doom and if it is, why do I get so many supportive comments and email messages? If this blog is all gloom and doom, please refer to the following posts and tell me where the gloom and doom is:

FINALLY Friday

Happy Easter!!!

Turkeys On An Egg Hunt

Low-Carb Fiber "Fudge"

Surprisingly Great Weekend

Some Saturday Photos

Pee Puddles and Toilet Paper Truffles

Tantrum-Free Target Tuesday

Most Valuable Currency: Chocolate Chips!

The above posts are only from April and they do not include any of my "Thankful for Three Things Thursday" posts. During the month of April I made twenty-one posts. Personally, I think I did a pretty good job of keeping the number of "bad day" posts to a minimum.

One of the worst things parents of children with autism deal with is having others judge us. Every parent is judged. I know this but we seem to be judged more and on a different level because many times we are the ones in public places with the child behaving in a way that others deem our child(ren) as that child. We are asked why we can't just make the child behave. It is very frustrating to explain to people who have never been on this boatride that things aren't as simple with children with autism as they sometimes are with typical children. All children have their ups and downs. All children have their good days and their bad days. For those who do not understand why we can't just make our child behave sometimes, I'll direct you to this website: Ian Community. I encourage people to take a look at the links directing from that site.

Children with autism are wired differently. It is not an excuse spectrum parents make for our children and their behaviors. It is a plain and simple fact. In many ways, they are just like other children and in many ways they are very different. Children with autism do not see the world as you and I do. As people without autism, Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm is a excellent read for anyone trying to relate to and understand the mind within a child with autism.

Yesterday and last night when the above mentioned confrontation took place between the people tearing down my blog and my husband's and my parenting abilities, I was told:

a) We do not discipline our children. - We discipline our children. Anyone reading this blog can see there are many times when I discipline and it's ineffective. It is very hard to find the magic key to unlocking any child and what works to make them behave.

b) We are not consistent with discipline. - I was given one example of when my discipline was inconsistent, and while I will admit there was an inconsistency there, I will also admit that I'm not perfect. NONE of us are. Why do my husband and I get judged by one example of inconsistency?

c) We shelter our children too much and they are smothered. - Before Milla came along, Reiss and I had an activity outside the house every day, Monday through Friday. Now Reiss goes to preschool two days per week and a Parent's Day Out program one day per week. He gets a lot of social interaction at both places. Fridays we go to a playgroup. What better form of social interaction and learning experience can children get other than by playing? Even "the experts" do not deny the fact that young children learn best by playing.

d) We do not take the advice of people with experience. - Seriously??...SERIOUSLY??? Because I have not heard a whole lot of advice being given. Rather, it's been more telling us what we're doing wrong than helpful hints. That's not to say that real honest-to-goodness advice has not been given. It has been given. And many times we have tried it.

We were told to let Reiss run around in nothing but underwear as a method for potty-training. We did that in the past. It didn't work. There were days when I was changing underwear ten and twelve times before noon. That is obviously a sign that it was not working. Now it is what we are using again and it's magically working. It wasn't that we were doing anything wrong in the past, it was obviously just not yet time for Reiss to transition into the "big boy" phase.

e) We are not bringing our children up right. - The only examples I was given are things from when Reiss was a baby...three years ago!!! Don't we ALL live and learn? There were no examples of what we are doing so wrongly now. Can we move on? If I'm such a bad parent, give me an example from say, the last six months or three months or whatever.

f) We only see Reiss as an autistic child and not just a child. That our lives only revolve around autism. - That's not true. Again, I will refer to the above posts. We have fun as a family just like any other family.

Many hurtful things were said to me. But not once was there ever a "Congratulations on getting Reiss closer and closer to being potty-trained." Nor was there a "So what are you guys doing these days?" - in our lives, in general, or regarding ways in which we are helping Reiss. No "How is Reiss doing in preschool?" or anything positive. Why do people only have to see the negative?

It didn't end there. I was even ridiculed simply because I write this blog. I was asked why in the world I would want to put all this out there. I was told with my blog posts it seems as though I am saying, "Poor me. Everyone feel sorry for me because my child is autistic." Again, where in the above posts do I come across as asking for pity. Or for that, matter, ANY of my posts. I don't want pity. I want understanding!

To answer why I write this blog...well, I've already answered that in part at the beginning of this post. Why do I write this blog? For the same reason millions of other people write blogs: I write it for ME. I write it as a means of therapeutic self-treatment. I write it to let others peek into my world. I write to give others a better understanding of life in a home where a child with autism resides. I write it to share our joys and successes. I write it because I was an English major in college with a concentration in writing. That's what we English majors do - we write. So condemn us for it!

No one is forcing you read this blog. I don't need people to tear me down on my parenting skills. I get enough stress in the real world - we all do, don't we? I don't need your numbers on my ticker. It's not a contest for me to see how many hits I can get on my site. The purpose of this blog is not to see how many people from different countries I can get to stumble in on my Feedjit. Having said all that, if you've made it this far and you still feel this blog reflects all "Gloom and Doom," then consider this your invitation from me to you to make your exit now and not come back. Don't let the door hit you in the a** on the way out!