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.

I'm Still Breathing. That's Positive Thinking, Right?

This day started out fairly awesome this morning but then turned to c-r-a-p by early afternoon. Our morning therapist, Jessica, and I took Reiss and Milla to a playground at a church that welcomes the public. It was a great time but while there I received a call letting me know our afternoon ABA therapist called off. No problem, that just meant we had more freedom to do whatever and go wherever the day took us. Or so I thought.

Being the health nuts that we are now and that we have been in recent years, and I say that with sarcasm because sometimes it would just be so much easier not being so knowledgeable of the different ingredients that go into consumable products on the market today, we do not keep over-the-counter cold remedies or pain relievers on-hand regularly. That's fine if we never get sick or if we never have aches or pains - and we rarely do except for the five week nightmare we experienced recently - or if natural supplements would work 100% effectively when they are taken. However, such as the case may be, despite downing capsule after capsule after pill after pill of Vitamins C, D, and Zinc and who knows what else for the last several days, James has a terrible cold and he asked if I could get him some Dayquil or something similar while I was out and about today. A trip to CVS seemed simple enough.

Before I go any further, let me explain that I really do try to remain positive with regards to outings with Reiss and Milla when I do not have James or a therapist along to help me, but deep down the mere thought of going places with the two of them and the possibilities and the what if's scare the bejeezus out of me. Reiss is a runner. Milla can be a runner. If you do not know what I mean by this, clearly you do not have a child with autism. Many typical children run too. Children with autism run and reeling them in can prove to be quite challenging. I don't really know how to explain why or how it's different when it's a child with autism running away from a parent as opposed to a typical child but that's not what this story is about anyway.

So we went to CVS and as I always do whether or not I have James or a therapist with me or I am by myself with the kids, we talked about The Rules before getting out of the car. I am not some drill sergeant mommy whose children are expected to stay in formation while walking through the grocery. Nor am I a Nazi dictator-type mother who only allows her children to stay crowded together like sardines to keep the order. I do, however, expect my two charges to refrain from running from me and to keep their outdoor voices turned off while out in public. The only other rule is that they are to look with their eyes and not with their hands unless given permission. Today they were told that if any of The Rules were broken, we would leave the store.

One minute into our CVS trip, the wandering from me had already begun. I gave Reiss and Milla a warning. They continued to wander as I tried to find the best deal on some sort of chemical coughing cure with the least amount of yuck in it. I gave them another warning not to run from me and darn it if Reiss did not outsmart me again! He told me, and I quote, "Mommy, it's okay because we're not running away. We're walking."

Really???

I could not decide whether to laugh, cry, or...or...or what. The same statement out of almost any other kid would surely be perceived as sarcasm but since Reiss has no concept of sarcasm and he processes everything in the literal sense, I had no one to blame for his and Milla's wandering but myself. After all, they were not breaking the rules because they were not running away. So I clarified that they were not to run or walk away from the area I was in and they needed to stay one arm's length from me.

Next thing I knew, Reiss and Milla were walking very fast towards the front of the store. I just watched and waited as they walked all the way down the aisle from the pharmacy to the front counter and when they saw me staring with probably the most evil look ever, they came back. When they got to me, I very calmly put the items I was carrying back on the shelves and we proceeded to leave. Or more precisely, I carried Milla screaming and kicking out of the store while Reiss walked with his hand in mine and whining all the way to the car.

All that and we still did not have anything for James and his cold.

Because I really needed to get something for James to take and because I felt Reiss and Milla deserved another chance to prove they could behave in a store, we drove up the street to Walgreens. Once again, we discussed The Rules before getting out of the car. We were in and back out with some cold medicine, cough drops, and Disney princess silly bands in a matter of about fifteen minutes and - dare I venture to say it - without any meltdowns from my children or stares from other shoppers. It was definitely a much different scene from the one at CVS just minutes beforehand.

I would like to say Reiss and Milla were angels inside Walgreens but that would be embellishing their good behaviors. They were pretty well behaved though. Well, if you don't count when Milla grabbed a bottle of fingernail polish and was about to paint Reiss' nails while I had my back turned for maybe all of ten seconds. And yes, I admit that I got roped into buying silly bands that they probably didn't deserve after the behavior they had demonstrated in CVS.

All was well and we all lived happily ever after. That is, until our next errand - to the cable company - where I had to contain myself and refrain from firebombing the place because of their lack of service and where Reiss and Milla danced and played on the floor and stood in the chairs and played with the gumball machine and asked other customers their names and rolled around on the floor being "Colts guys" and at one point, Reiss even locked the door and I just let them do all of it because goodness knows if I had to make them follow The Rules in the cable company's office while trying to stay calm with people who have left a cable running across our yard for close to four months now, I may have gone into cardiac arrest or stopped breathing or some other unintentional bodily destruction and I would not be here now to tell all about it.

Or to take another breath after that unbelievably long run-on sentence.

Edit: 10/01/2010 - Thank you, to a friend of mine who read my blog and so discreetly emailed me to let me know I used the word "wonder" where I should have used the word "wander." How embarassing! Judging by how I spell nowadays, no one would ever guess I won my elementary school's spelling be in the fifth grade and then went on to the county bee only to end up misspelling the word "measles."

An Early Morning Stumble

After a rather early awakening this morning by a certain two-year-old, I found myself tossing and turning, trying unsuccessfully to go back to sleep. So, as I almost always do when battling insomnia, I got up and went to the computer.

As the new school year approaches, just thinking of Reiss attending public school gives me heart palpitations. School starts in four days and we are not even certain whether or not he will be going on to kindergarten within our school system. Yes, with there only being a matter of four days that separate us from now until the beginning of school, we should know if our child is going to start school and yes, most people - including other parents of children with autism - do know whether or not their child is going to go to school. However, we are not "most" people and "most" people do not have to deal with case conferences, IEP's, therapists, and assorted other things that make up the story behind why we do not know if our child will be attending kindergarten within the public school system. But that story is one for another time, not now.

Back to my heart palpitations and the anxiety causing them...

In the past few weeks, merely the thought of sending Reiss to public school darn near gives me a full-on anxiety attack. My mind races with news stories of children with autism being abused by teachers, disappearing from school, and of one autistic boy who even drowned in a school's pool. I think about how no one knows a child with autism like his own parents. I think about how I have tried to explain to one of my own relatives that my child does not comprehend danger and is often a "runner." I also recall the response received and it was not one that provided me reassurance of a total understanding of the problem. If I cannot get someone who is related to my child to "get" it, how on earth am I going to stress the importance of safety to a teacher - someone who is merely being paid to educate my child, not make sure for instance, that he comes back from the bathroom or eats only the food sent to school with him or does not have a meltdown because his pants got water on them or...or...or...?

It is all the "ors" that have brought homeschooling back to the forefront of my thoughts, so with not being able to sleep this morning, I began digging around (again) online for homeschool resources and specifically, for people who have children with autism who they homeschool. In doing so, I stumbled across Free Printable Fun, a fun little blog written by Jamie Sue, a crafty mom to a five-year-old boy with autism.

Jamie Sue does not post very often and from what I have read so far, I do not get the impression that she homeschools (but I could be wrong!) or that she uses the projects she posts as homeschool materials. Again, finding her site was simply a stumble for me that appeared when I Googled "homeschool autism resources." However, the content of her posts are valuable and the projects seem fun, even if they are not meant to be part of a structured homeschool curriculum - although some of them could be used in conjunction with other materials for that very purpose.

How Many Are Out There?

This may sound like an unhealthy bit of curiosity but sometimes I cannot help but wonder how many parents out there are on the verge of having a child diagnosed with autism. Some people claim to have gay-dar, which I do not have, nor do I care to have. Whether you play for the girls' team or the boys' team makes no difference to me. However, I do sometimes think I have A-dar and can spot a child with autism in a crowd or in a playgroup or while we are in the library in the children's section.

Before anyone criticizes me though, I only think I possess this ability to pick up on an autism frequency because I have been exposed to so many children with autism other than my own.

I wonder how many people - parents of children with autism, people who have worked around children with autism, or simply individuals who have had exposure to autism - pinned my child with autism using their own A-dar. Were they friends of mine who were trying to tell me something before I ever had a clue what was going on with my child? Did they know but did not want to say anything for fear of my reaction? I really wish I knew.

I wish I knew what the right thing is to say or not to say to the three friends of mine with children whom I suspect have autism. How would they react if I suggested they have their child evaluated? Has it ever crossed their minds that their child has more going on than just a cranky nature and delayed speech? Have they ever wondered why their child throws tantrums over seemingly nothing? Or that the constant diarrhea never seems to go away? Do they think it is normal for a child to have some kind of illness at all times and that medicating and medicating over and over is the key to good health? Has anyone ever even given them a list of signs of autism? Probably not. Many pediatricians know little or nothing about autism themselves, much less would they know how to educate the parents of their wee patients.

Then there is the child of another friend of mine whose developmental fate is unfolding right before my eyes every day on Facebook. This particular friend is a person with whom I am primarily Facebook friends with and only know as an acquaintance in "real life" - in other words, someone who I would not dare suggest an inkling of a notion of autism regarding her child. I have to wonder why she never makes the connection between her child's vaccination schedule and the following days of non-stop crying, fevers, and illnesses. She is one who posts often and with great detail regarding her family's goings-on - which, by the way, I am not criticizing by any means. Most of the time, I rather enjoy her posts. Her family is very active and helpful to others in need and that is probably why it is all the more heartbreaking when one day she posts something along the lines of "_____ was so brave today at the pediatrician's office while getting all his shots." and then the very next day her posts may go something like, "_____ was up all night last night with a fever. He's sleeping now. I hope he just had a rough night."

And then perhaps later that day, "_____ has been crying all day long. I can't wait for these phases he goes through to be done." Or, "Ends up _____ is sick with a fever, diarrhea, and vomiting. Back to the doctor.....again."

I have watched this poor mom's Facebook posts go on like this following every round of shots her child has received since his birth not so long ago. I want to reach out to her and tell her what I have noticed. I want to tell her that only she can make an educated decision whether or not to have her child vaccinated BUT this correlation between his vaccines and his poor health is unmistakably and undeniably not a coincidence.

If I had it all to do over again, I would hope that if someone's A-dar was going off with Reiss when he was younger, that person would have said something to me. At the same time though, I think I know why no one ever said anything to me. They were probably in the same boat I currently find myself in. They were afraid of how their suggestion would be received.

And now I wonder which of my Facebook friends will ask, "Are you talking about my child?"

Kicking Myself

While we are enjoying the results and benefits of the last three weeks of Reiss receiving ABA (Applied Behavior Analysis) therapy, at the same time, I am kicking myself every day for having not fought more intensely for him to receive such therapy since learning about it more than a year ago.

When I first discovered ABA therapy, I did what I now look back on and think of as a very casual, half-hearted effort to seek ABA therapy as part of our treatment plan for Reiss' autism. After coming up with basically no resources for ABA in our area, I gave up. A few months later, once again, something apparently sparked my interest in seeking out ABA services for Reiss but the only results I came up with at that time were Lovaas and ABA centers that are a one-hour one-way trip from our home.

I didn't want the hassle of being responsible for submitting our own insurance claims that came with Lovaas services and driving a one-hour drive to a center and sitting for four to eight hours while Reiss received therapy was simply out of the question. Laziness has nothing to do with my reluctance to file our own insurance claims. No, my hesitancy stems more from past experiences with insurance companies and how they frequently try to pass the financial responsibility on to the consumer rather than own up to their entire purpose for providing insurance - paying the claims.

Making a one-hour drive to a center was not even something I would have considered doing. It's not that I would not do just about anything to improve Reiss's autism symptoms, but rather, many factors combined to make considering such a trek on a daily basis totally unfeasible. First, I also have Milla to think about. Making such a trek daily when she was barely a year old would have been like packing up our lives every single day so that we could go and sit all day in the parents' area of the center waiting for Reiss to come out. How would that even be fair to a one-year-old? And that's not even considering the factor of inconvenience. Second, Indiana is not the greatest place to be during the winter months. It's not unusual for what is usually a five- or ten-minute drive during warmer months to transform into an hour-long expedition out into the tundra during the winter months. So imagine what an hour-long drive under normal driving conditions translates to in blizzard-like conditions. Not fun. Not to mention, stressful, and somewhat dangerous.

During all this, there was also the question of "How in the world are we going to pay for this?" When your child receives an autism diagnosis, no one hands you a nice little manual on how to proceed after you leave the doctor's office. Most of this stuff you learn by trial and error, talking to other parents of autistic children that you meet along this journey, and by spending countless hours doing your own homework - and God knows that's necessary since no doctor out there is losing sleep over my child or spending his time advocating for him.

Anyway, so it's no surprise that I learned about ABA and then went for months wondering how all the families in these success stories I was reading about could afford ABA for their child(ren). No one ever bothered to mention anything to me about autism mandates or the fact that - regardless of my loathing Indiana winters - my family lives in quite possibly one of the best states in the United States when it comes to having a child with autism and the mandate that entitles my child to insurance coverage for autism treatments.

Depending on the source one consults, a full-time ABA program for a child can cost upwards to $100,000 per year. Yes, that's per year - approximately two times the total median individual (as opposed to a family) income for a resident of the United States and approximately three times the annual cap of $36,000 that many states provide for in their own autism mandates. Luckily, as I later found out, Indiana is not only lucky enough to have an autism mandate, but we also currently do not have any dollar amount caps on the benefits a child can receive annually. At $100K per year (and that's quite a lot more than the average I am finding), or even $36,000 per year for autism treatments alone, it begs the question of why the insurance companies themselves are not calling on politicians to demand funding for further research into autism and its causes....but that's a whole 'nother rant.

It wasn't until early this year when I declared myself to be on a renewed mission of seeking out the best possible routes of treatment for Reiss that I really began paying attention to what the autism mandate meant for us. When I researched it further and learned that basically the mandate states our insurance plan cannot deny ABA services to Reiss, it was like we had won a small victory that I had never really fought very hard to achieve. It was a victory, nonetheless, and when the former director of one of the centers I had previously contacted gave me a call to tell me she and her husband were opening a center on our side of town, I was ecstatic. Little did she know that in the following days the introductions she made possible between myself and another former employee of the same center where she was employed would result in our family getting started with ABA by means of an in-home program, much sooner than her own center was opened.

Do I feel guilty for facilitating Reiss's in-home ABA program with a different individual than the person who was trying to get us onboard as clients in their own facility? No, not really because we may still end up sending Reiss to the center once it opens so that he can continue having social interactions on a regular basis.

Long story long, that is how we arrived where we are today. Reiss is doing an in-home ABA program for around 22 hours per week and we are in Week 4. After school is out for the summer, Reiss will bump up to forty hours per week. If you are not familiar with ABA, this probably sounds like a grueling schedule to keep, especially for a child who isn't even five years old. However, ABA therapy is very play-oriented in its teaching techniques. Reiss generally runs three to five "programs" and then gets a free period in which he can choose the activity he wishes to do for the duration of his break until the next set of programs.

The results we have seen so far are amazing.

We are experiencing many less tantrums.

Now, unlike before ABA, Reiss sometimes gets water or something on his shirt and there is no meltdown. Sometimes, in these instances, my husband and I find ourselves looking at one another while both of us are thinking, "Okay, where is the tantrum? Is it coming and is just delayed?" But it never comes and we are shocked and amazed.

Car rides are actually enjoyable - something I have never - post children -been able to say prior to now. Reiss and Milla sit. And they are often quiet. No screaming. No stressing me out to a point where a three minute car ride is like enduring a non-medicated root canal. And at the risk of jinxing myself, I will even go so far to say they often watch DVD's while in the car, as in, they actually pay attention to them.

And discipline....oh, where do I begin? Prior to ABA, nothing and I really mean nothing has ever proven effective with Reiss for any given amount of time. Timeouts were the worst. Sending him to his room was like a reward. Reward systems meant nothing to him. Positive reinforcement was like a permission slip to follow his good deeds with an undesirable behavior. If parents of typical children thinks it's difficult trying to discipline a child, they have no clue what it's like for many parents of autistic children. These children simply think and process things differently - and that's not my opinion, it's a fact.

Reiss is writing and drawing and - I don't even know how to word this to give it the magnitude it deserves - recognizing written words. I would venture to say he is reading. Reading by rote memory recognition of words used repeatedly in visuals with his ABA programs, but reading, all the same.

The most amazing thing though, is that Reiss is actually initiating conversations - no, wait, I mean meaningful conversations with people. He is asking people their names, their middle names, last names, birth dates. Before ABA, Reiss barely noticed the existence of other people around him, much less engage in conversational speech with them.

With ABA, I feel like we have our sanity back. Literally.

Finally arriving where we have has been quite a lesson in researching our options and digging for that information that no one is going to spoon-feed us. The whole process has left me wondering why we didn't get ABA for Reiss much sooner - at any cost or inconvenience or whatever. But I know the answer to that - I just didn't put up enough of a fight.

And while the ABA is costing us an arm and a leg, even with insurance coverage, that sanity isn't something one can put a pricetag on.

I can just see the commercial for ABA....

Autism: Your child's ability to develop "normally" out the window.
Effects autism has on a family: Feelings of isolation and lack of others who understand and can relate.
Treatments for autism: More money than any average person makes in a year.
ABA: Too darn much.
Getting one's sanity back after ABA: Priceless.

No, I Have Not Gone Missing In Action

But one might thing so considering this is the longest stint I've gone without posting something since I began blogging last year.

Wherever shall I begin? So much has gone on in the last few weeks that I barely remember a lot of it. I suppose I will just begin with the most exciting parts.

Yesterday we started ABA with Reiss!!!!! Yes, this is very exciting news and hence, the exclamation points. It is not only exciting because of the spectacular results we have seen in only two days of therapy, but also because we have been waiting for what seems like an eternity for the therapy itself to begin. Long story short, we went with a BCBA (Board Certified Behavior Analyst) who used to work in an ABA center and then left the center to go out on her own and create in-home ABA therapy programs for children. Because she is relatively new to being out on her own, she is still building up her group of therapists she employs to go out and do the actual therapies.

Today was Day 2 and already I feel like I have learned so much simply by giving all control to the therapists and watching how they handle particular situations. Last night was probably the most "normal" evening we have had since Reiss was born. We sat. We ate dinner. Everyone was calm. I actually feel like it may be the first time I was able to relax in close to five years. And breathe.......I got to breathe without feeling like the weight of the world was on my shoulders from caring for a child who can go from zero to all-out ear-piercing repetitive screaming in 4 milliseconds.

For the first time ever, Reiss is saying "I'm sorry" when he does something wrong, like screaming at someone for no reason. Granted, he does have to be prompted to say it and he does hesitate but he's doing it! And without having to be carried kicking, hitting, screaming, and biting on the way to the timeout chair to sit for a spell for not doing as he is told.

All of it is just totally amazing! It's like a friend of mine says, "I don't know what they're doing but it WORKS!" Actually, I do understand what they are doing and much of it seems so simple, it is like we have been doing much of it all along - now it's simply in a more organized and purposeful way. Needless to say, I think this is going to be a very good thing for Reiss and our entire family.

So much more has happened around here but I really must figure out what to have for dinner besides roast. Until next time.....

Where ARE You, Supernanny???

Today has been one of those days where the suggestion of having a lock on the outside of my son's door no longer seems like a joke amongst a group of moms discussing their children but like a really great idea.

Not so long ago, Reiss and Milla and I used to go to a group gathering on Friday mornings at a local church. All the mothers would share some fellowship while our children played in an adjoining room. Quite often the conversation would turn to discussing our children and the funny things they had done recently and sometimes the not-so-funny problems of disciplining children. A few of these moms told me, in all seriousness, that they had switched the door handles on their child's room to make it so the lock was on the outside of the door. I used to laugh at such a notion....

No more.

ABA therapy cannot begin soon enough for us. I was hoping it would have already begun but unfortunately, we do not have enough therapists lined up yet. Actually, there's a little more to it than that but that's the long and short of it. We should be up and running within the next two weeks. If not, my sanity may not last.

Some days we have these really great days and then other days are just maddening beyond belief. We have already started going to a social skills group associated with the ABA group we are using and Reiss does really awesome there and pays attention fairly well to the other kids' therapists who take charge of the group. Once we are up and running with our own in-home ABA program, our therapist will go with us to the group as well. Until then, I take Reiss and Milla and he has to do what the other therapists tell him to do.

Yesterday was quite interesting. We went to the social skills group. Reiss behaved pretty well but did have his moments of non-compliance. When he gets a timeout with the ABA therapists, he is generally very compliant and does his "time for the crime." Overall, yesterday was no different, with the exception of one instance where Reiss put up a bit of a fuss before his timeout. The therapist wasn't having it and seconds later, Reiss was sitting quietly in a timeout.

Fast forward to about an hour later when we got home and he did something to get a timeout here and being the observer I've learned very quickly to be, I did everything exactly as the ABA therapists, only to be met with a four-year-old putting up a fight equivocal to that of maybe someone three times his size just getting him over to the designated timeout area.

Seriously, I don't understand what I am doing wrong. I can do everything exactly the same (or, at least, I'm pretty certain it's exactly the same) as the ABA therapists, even down to the detail of showing no emotion. However, what works like magic for them most often results in kicking, screaming, pinching, hitting, and total lack of cooperation to sit in the timeout area. Reiss will sit quietly in a timeout for therapists and for his teacher at school a lot of times, yet I can't even get him to stay in the same place in a timeout when restrained in a booster seat. The only way to keep him in one place for a timeout at home is to put him in a booster seat that has buckles on it and also to restrain the booster seat to something else so that it cannot move. We have, well had - we need to refasten the straps - our booster seat sitting on the floor for safety and strapped to the posts that make up the railing around our stairs leading to the basement.

If it doesn't sound safe, I can assure you it is safe. There is no way Reiss can fall over, strangle himself, fall down the stairs, or whatever else anyone may be thinking. And just a note for anyone who may be thinking of calling Child Protective Services on me, I've checked, this is not only safe but actually what is recommended for keeping a child safe during a period of timeout.

I just keep thinking if my sanity can last until the ABA begins, we will all be fine. Reiss took non-compliance to a new level today. He peed in his pants twice. He pooped in his pants three times. He went through several pairs of pants and then fussed and complained and harassed me endlessly for two hours about how he has no pants that fit him. His ideal pants are Goodwill purhased, been through who knows how many children, faded beyond belief jeans....or home pants, as he calls them.

Now, I have nothing against secondhand clothes - they are practically all I grew up with and I still continue to buy from Goodwill occasionally when I can find something I like. However, for Reiss to say that he has no pants that fit him is simply ludicrous considering the fact that his size 4 and size 5 wardrobe has been complete since before he was even three years old, due to the fact that I exclusively buy him Gymboree clothing when it is out of season and on clearance and during Gymbucks earning and redemption periods and with coupons and using my Gymboree Visa and Gymboree Rewards program and on and on and on.....my method for getting Gymboree clothes for next to no money out of pocket is a whole 'nother post all its own and I won't bore anyone with that sort of thing today.

Needless to say, it breaks my heart when I see several pairs of excellent quality size 4 Gymboree jeans with those little marked down pricetags still hanging from them getting pushed to the far reaches of Reiss's closet all while he complains about having no home pants clean because all his crappy Goodwill jeans that cost more than the Gymboree jeans are dirty because he either pooped or peed in them.

And all this going on while Milla is trying to take a nap and keeping him at a low roar is like getting an elephant to tread lightly on a glass roof....

So going back to my original question....

Where ARE you, Supernanny???

Of all the lucrative ideas people have come up with to swindle parents of children with autism out of their dwindling financial resources, why hasn't someone come up with the idea of being a Supernanny-type professional exclusively for children with autism? Now that would be someone I would hire...

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.

Therapy, As An Extreme Sport

Some parents overload their kids' schedules with football, soccer, softball, basketball, karate, gymnastics, dance, hockey and whatever else their children come home begging to partake in. But not me. Nope, Reiss has never begged to be in any of those things and other than the occasional passing by the tv and noticing Daddy is watching "Colts guys" - which consist of any football players, doesn't matter whether it's college, NFL, or a fictional movie like Rudy - I would venture to say he is not even aware of the existence of many types of sports.

Oh sure, we play outside quite often. We throw balls around. We get the hose out and these monkeys play and I get soaked and slightly irritated. James and I take Reiss and Milla out to the swingset and sandbox to play around for awhile. We ride our bikes. Or, more precisely, James and I ride our bikes and Reiss and Milla ride in the bike trailer. Reiss does ride his bike with training wheels but his bodily movements (kinetics, kinesthetics, neither of those are the right word. Where is the right word when I need it???) need some work and his pedalling is not fluid in motion. In summertime, quite frankly, I think Reiss could easily be persuaded into living outside if I lost all my marbles and thought it was a good idea as well. That, however, is not the case. I still have a few marbles rolling around up there and furthermore, I have no plans of chucking the house for a nest or den in the backyard woods.

Ramble, ramble, ramble....point being this: Organized sports are not something Reiss participates in at this time. Milla, well, she is definitely too young for that sort of thing just yet.

So instead of sports, we have therapies - my new pastime. Well, actually, my part in all of it is doing the research, finding the resources and professionals to carry out the therapies, waiting around (when the therapies take place in an office setting) while the therapies are being performed, and a whole lot of praying that all of it is going to result in some real and visible changes.

If my kids' therapy schedules were to be laid out in a format similar to an event program at a sporting event, it might look something like this:

Reiss:
Developmental Preschool (Preschool through the local school system for children with learning challenges)
Miss Emily, The Toy Doctor (Private Occupational Therapy)
Talking Doctor (Private Speech Therapy)
and coming soon....Applied Behavior Analysis, the in-home program version

Milla:
Miss Laura's Visit (In-home Speech Therapy through Early Intervention)
Miss Emily and Her Swing (Occupational Therapy)
Jill and Her Toybox (In-home Developmental Therapy through Early Intervention)
Miss Ashley and Her Potato Head Couple (Private Speech Therapy)

I never wanted to be a soccer mom. My friends with older children always told me to never let my children play baseball or softball because the innings are so long with children who have no skills playing and it makes the game last all day. No mother wants to be this kind of mother: the Therapy Mom.

But that is exactly what I have become.

The silver lining to this storm-sized cloud though, is that I have already seen improvements in both children in just the two short weeks from when we began with Reiss only being in preschool and Milla only receiving in-home speech therapy. Reiss actually wants to go to the "toy doctor." Milla is using "I" phrases more in place of her usual "me" demands. They are both gaining exposure to adults outside of their usual regimen of Daddy, Mommy, teachers, and occasional grandparent visits.

Now, If I could just get more of their appointments in sync with one another, I could possibly become that mom I have wanted to become for a very long time: The Bookworm Mom. Oh, how I miss reading. Reading, that is, during daylight hours and not at three in the morning because I am awake worrying about all I didn't get done the day before or all that needs to be done in a few short hours or wondering if today will be the day that Reiss goes poop on the potty again and not in his pants or how I could have handled things the day before when tempers started tantrum-ing or hoping to find peace in the hours that will follow when one or both children are not behaving in a most desirable way or......or......or.................blah, blah, blah.

In my case, perhaps the title of "Therapy Mom" should also mean some of it for myself as well.

At the End of My Rope...

Never in a million years did I think at nearly five years of age my child would still be pooping in his pants - and not just an occasional accident, but regularly and on purpose! I am so over cleaning poop out of Reiss's pants on a near daily (sometimes two, three, or four times) basis, I could tear my hair out.

And he was doing so well there for several weeks.....

But no, Reiss is now back to pooping in his pants almost daily and is proud of himself for doing it. He wants to wear a diaper because Milla wears Pull-Ups (visualize me saying this in a snotty voice). Seriously, I could cry. Actually, I might just do that later.

Today alone, I have cleaned poop out of Reiss's pant two times. Weeks ago, even just days ago, the threat of wearing a diaper would send him into a tantrum begging not to have to wear one. He goes back and forth though...one day he wants to wear a diaper to be just like Milla. The next, he is having a record-breakingly loud and extensive meltdown at the mere mention of having to wear a diaper. Make up your mind already, ya' know??

How in the world is a person supposed to know how to handle that? GRRRRR!!!!!!!

And by the way, I hope I never sound like I don't like or love my own child. I love Reiss to pieces but some days....some days I wish with all my being things could just be even a teensy bit easier.

On a more positive note, my husband and I are working with a woman who is the former director of a therapy facility for children on the northside of Indianapolis in helping her and her husband (also a former director of the same facility) get the word out about a similar facility of their own that they hope to open by summertime.

Their facility will provide ABA (Applied Behavior Analysis) therapy, occupational therapy, and speech therapy services all in one building - a wonderful benefit to those parents who either have several therapists coming to their homes and/or travel to several different facilities in order for their children to receive their different therapies. This is exactly the kind of thing this side of town (we live on the southside of Indianapolis) needs, as no other facility of its kind exists here.

I always say the southside is the worst place to have a child with autism because all the professionals specializing in autism treatments are on the northside. The one place that is not is downtown and is a university-based autism treatment facility that is so overwhelmed with patients they cannot provide the intensive treatment these children need. Just ask me and my husband. Unfortunately, we know first-hand. For example, their recommended form of therapy for Reiss was ABA for one hour, one time per month. Anyone who knows anything at all about ABA knows that one hour of ABA might as well be nothing. ABA is generally given to children ten to thirty hours per week, with some children needing a little less, others needing a bit more. However, one hour per month would never be considered effective treatment by the professionals who originally conceived the ABA theories.

In other news....(is that so cliche or what?)

A girl, well, she's actually a woman now, I went to school with and am facebook friends with sounds like she is in the process of beginning the journey into autism with her son. It breaks my heart to know others have to go through what we go through but it's nice to know I have been there, am still there, and can help others just now joining "the club" that no one wants to be a part of, but many of us (and a growing number of us) are forced into joining.

There were some other positives to my day today. I didn't ditch my friend, Carol, and our regular Wednesday mall-walking date like I have had to do for a few weeks now due to other things going on. So I did get some exercise today.

While at the mall, in addition to walking two miles, I also rocked the Bath & Body Works store! My brother-in-law gave me a giftcard for there. I was unsure of the amount of the giftcard and kept forgetting to call the 800 number on the back to find out. After walking this morning, I had some time to kill before going to get Reiss and decided to go spend my giftcard before I forgot about having it. Their semi-annual sale is going on right now and that is one sale I love so much that I actually tell people about it. I must sound like a real dork telling people about a sale but this sale is a good one. How can I pass up stocking up on gifts for people when they include getting body sprays for $0.35???

Anyway, so I picked out what I thought was probably around $25 worth of stuff. It ended up being a total with tax of $30.39. My giftcard was for thirty dollars so I got 21 items for $0.39 out of pocket! Not too shabby, especially considering I was just guessing at the amount of the giftcard.

After robbing the Bath & Body Works store, I took Milla to the play area for the remaining little bit we had before needing to pickup Reiss from preschool. She played and ran around and I hope she had fun. She looked like she was having fun. There was one mom whose little girl of about eighteen months, by my guesstimation, ran out of the play area. The mom was young (but then, anything younger than thirty seems young to me these days) and was sitting there talking with a friend and not watching her daughter. I was watching her daughter and Milla at the same time and wondering how long it would be before she got up to go get her daughter. Finally, after her daughter was about fifty or so feet from the play area and getting ready to enter JCPenney, the mom got up to go look for her daughter. And it wasn't even in an oh-my-goodness-where-is-my-daughter sort of way. It was more like la-dee-da-dee-da-I-guess-I-will-go-find-my-daughter-now kind of way. GRRRR!!!! (Just for fun, can you count how many times I used the word "daughter" in that paragraph? Sheesh, where are those writing skills people used to gush all over me about?)

Anyhooooo.....surely anyone reading this to here is bored to tears by now so........

I'm off...back to conquering the world I go. HA!

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.....

So Much to Blog, So Little Time...

So I better get started while there is peace and sleeping children.

Where do I begin?

Today has been a day of super highs and downright lows. It all started with me patting myself on the back for thinking ahead last night and sitting out some roast cuts on the stove for around two hours and then placing them in the garage refrigerator overnite to thaw. Actually, I'm pretty good about that planning ahead thing when it comes to dinner but roasts take a long while to thaw and even with that amount of time out of the freezer, they were still practically solid this morning. No matter, I seasoned them up and pre-browned them prior to tossing them in the crockpot with some new potatoes and baby carrots. We also have some leftover green beans and corn mixed together that need to get gone. This type of mixture is what my mom always called succotash but I have since then come to learn that true succotash is lima beans and corn....not grean beans. Dinner, done! Score! One point for Mommy!

Next up was showering. I try not to complain about it too awful much but I rarely get a shower during the day when Reiss is home and Daddy is not. Most mothers can just throw their tots in front of the tv and trot off to the bathroom for a few minutes of blissful hot water raining down on them. Not me. If you read this blog at all, you know Reiss does not watch tv. And left unsupervised.....well, that doesn't happen. Enough said. Having said all that, I decided I would go ahead and try to take a shower this morning anyway. It must have been some kind of Christmas miracle because I was able to get in the shower, lather up, rinse and get out with the house still standing. Granted, it was only three minutes but it was probably the best three minutes I've had all day. Score! Another point for Mommy!

Apparently, I must have been getting a little cocky with all my triumphs of the morning because soon thereafter, the mayhem began. We had gone out for a quick few errands and had returned home.

A little about our trip out first.....

While we were out, I saw a man turn into a cigarette and lottery ticket store and do an almost complete donut on the icy parking lot. I don't think he meant to do it, but it unnerved me just a bit because he turned into the place going way too fast. Had he spun just a few feet farther over from where he did, he would taken out at least three cars. Good job, buddy! Now go in there and buy some cigarettes so you can kill just a few more brain cells.

At one point while out, we were driving in another parking lot and I saw a girl in what had to be no less than five-inch heeled boots with an ice pick thin spike serving as the heel. All that.....walking across an icy, snowy parking lot. I wasn't sure whether to laugh or be impressed. All I know is that I was this close (visualize my thumb and forefinger coming together as close to one another as possible without actually touching) to rolling my window down and clapping. But I didn't.

One of our errands included going through a drive-thru and getting some lunch to take to James. Just as we entered the parking lot to the fast-food joint, some lady pulling away from the pickup window was either oblivious to me driving in the parking lot or simply felt she owned the place because she just started pulling out right in front of me. Luckily this parking lot wasn't icy or I'm sure I would have slid into her after having to slam on my brakes to avoid hitting her. I had to lay on the horn. Okay, maybe I didn't have to but I wanted to get her attention. And then, of course, as he always does when I beep at someone, Reiss had to ask me, "Mommy, why'd ya' beep at them?" And, of course, I wanted to say, "Because that lady had her head in her rear, sweetie." But I didn't.

Back home again, chaos ensued quite rapidly.

On the way home, Milla fell asleep in the truck so once we arrived home, I took her out and brought her into the living room and laid her down in a chair. Reiss was playing in the garage. Milla was snoozing with sweet little toddler snores barely audible over the heating ducts spewing out warm air since I had cranked the heat up immediately upon entering the house . I had turned the heat all the way down to 66 when we left and it must not have taken long for it to get that cold in here with the arctic temps outside because it was all the way down to that temperature and we were not gone long at all. So all was well in my world and then some psychotic battery-operated vtech bug toy decided to go off all on its own and make a musical wakeup call to Milla. Score! Psychotic toy, one point!

Reiss came in from playing in the garage and told me he had to poop so we went to the master bathroom and we both sat in there doing our business. Reiss on the toddler potty and me on the regular toilet. I was done before Reiss and got up and flushed. The toilet seemed to be taking longer than usual to refill the tank but I didn't think anything of it and next thing I knew water was spilling over the edges all over the place. Good thing Reiss had finished up because I needed to get him up to clean up the flood. Amidst that disaster, the shirt Reiss had taken off and placed at his feet had gotten soaked. As I tried to contain the flood, Reiss treated me to an extended length tantrum, extolling the extreme grief I caused him by not allowing him to wear the "pee shirt." Bad Mommy! I am just so mean.

Score! Psychotic toilet, one point!

Next up we went to the basement to see if there were any visible traces of the great flood of December '09. I didn't see anything and was glad of that because maybe it means that our contractor actually got something else right and the floor really is water-proofed.

While we were in the basement Reiss and Milla played with some toys that we just recently banished to the downstairs play area to make room for the Christmas toy explosion. Reiss was pushing around some robot toy and somehow landed flat on his face. The first time he did it, he laughed and got right back up. A few minutes later, I heard him pushing around the robot again, a cracking noise, a falling noise, and then Reiss crying. I went into the hallway and quickly picked him up to find blood pouring out of his nose. I'm not entirely certain what happened, as I couldn't get Reiss to answer my questions very well but I think he was pushing the toy around with his head down and ran into the door jam. Score! House, one point!

Finally, it was naptime and that leads us up to now.

I swear, the adventures of my daily life often read like a manuscript for a movie entitled "Manic Mommy" or some other hysterical comedy at which I am usually the only one not laughing but it doesn't get much better than this. There is peace and sleeping children, a fully cooked meal in the crockpot, and a husband who made it home safely and is crashing Bigfoot trucks all over the place on our new Wii.

Breakfast with Santa Claus

Reiss, Milla, and Daddy at one of the craft tables. They made little reindeer ornaments with popsicle sticks, pipe cleaners, and googley eyes.

Reiss getting ready to tell Santa Claus to bring him a Colts shirt, please - with buttons! We're still trying to figure that one out.

Reiss surprised us with his willingness to sit on Santa's lap. Milla wasn't having any of it!

Another surprise.....Reiss not only did not throw a fit about the horse, he was very willing to check him out and even give him a little pat. If I sound pessimistic, I don't mean to. I'm just going by most of our experiences with animals. Reiss and Milla are both terrified of most animals - even Grandma's chihuahua. In their defense though, Grandma's chihuahua is yippity-yappy and more hyper than Reiss doped up on candy bars.

Dancer and his merry red-painted hooves. This was the last photo I took before we all went on a very, very chilly carriage ride.

Yesterday was our breakfast with Santa Claus. The event was held at a church not far from our house and was sponsored by our county's autism support group. Although we had to take our own food in order to be able to stick to eating GFCF, it was nice to be around others who "get it."

No one around to point, stare, and whisper if our children began having an all-out meltdown over something as trivial as a drop of water getting on their shirt or having to have the food wiped from their faces (as was the case with us). Really, I'm not prejudiced against people who only have typical children but I do get tired of the looks we receive. If pointing and staring at children like mine is the example these parents are setting for their own children, it's no wonder why their kids grow up to be the ones who bully kids like mine once they are in school.

I will not go off on that tangent though. This is supposed to be a positive post!

Reiss and Milla got to eat breakfast at a table decorated with Christmas decor and marshmallows for snow, work on crafts, see Santa Claus, use bathrooms away from home (which is the whole reason we went there, right?), and take a carriage ride. It was incredibly cold yesterday but fun was had by all. Other than the mouth-wiping incident, I would say it was one of our best outings in quite some 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