Tuesday, June 30, 2009

It's Progress, I Suppose

This morning Dr. Harvey Karp, also known (at least, according to his profile) as "America's most read pediatrician," posted "Cracking the Autism Riddle...." over on The Huffington Post.

Although I don't claim to speak for anyone other than myself, much less the entire autism community, I am certain there are several thousand parents with children on the autism spectrum out there who will agree with me when I say it is very difficult to give any measured amount of credibility to a medical professional such as Dr. Harvey Karp, who has a history of adamant denial of the existence of a link between vaccines and autism. It never ceases to amaze me how so many of these "professionals," who have not done their own laboratory studies, nor have they ever been witness to watching one of their own children regress into himself after receiving a round of vaccines, can sit back and so unbudgingly deny what seems so apparent to many of us who experience the effects of autism in our children on a daily basis.

And don't even get me started on Dr. Karp's fellowship in the American Academy of Pediatrics.

What's that? You don't understand why being a member of the AAP is a bad thing? Well, let's just say that I am sick and tired of the pediatric medical community in this country being fed the same information regarding vaccines that any average Joe is capable of finding if he or she does their homework, yet so many of these overpaid imbeciles swear up and down that vaccines play no part in autism. Many of these pediatricians have this problem that I like to refer to as not knowing what they don't know - a.k.a. Ignorance. I've even had the privilege (that's sarcasm, folks!) of being told by one pediatrician that there are no longer any vaccines that contain thimerosal (and that's mercury, folks!). Hmmm....that's news to me - and apparently to the FDA (see Tables 1 and 3) as well. And the FDA can call it a "trace" all they want, but when we're talking about one of the Earth's most dangerous and volatile substances, it's no comfort to me that it's only a "trace" amount when someone is standing over me or my child's body, ready to take aim with a needle syringe. Seriously....

Until concrete evidence of the cause of autism is found, I'm going with what I've seen in my own child and no doctor will ever be able to convince me otherwise. In the meantime, Karp's article provides a trace amount of hope for me that perhaps some of the allopathic medical community may be coming around to admit that autism indeed is on the rise and not just being better recognized.

Friday, June 26, 2009

Finally Friday!!!

It's finally Friday and under normal circumstances, that is a good thing. However, considering I have not gone to the grocery in almost two weeks, who knows what we will be eating this weekend. I could sneak out after dinner and leave my husband to oversee tonight's pool party, of which the guest list only includes Reiss, Milla, my husband, our plastic kiddie pool, and possibly our neighbors if they should happen to be outside and come over for a visit, but browsing the grocery on a Friday evening is not my idea of fun. Taking a stroll through the grocery on a Saturday morning or Saturday evening does not sound terribly appealing either so what it comes down to is choosing the lesser of the two evils. I think I'll go tonight. Who cares about vegetables and healthy foods, we are almost out of chocolate and that is not a good thing.

And speaking of the lesser of two evils, I'm not sure which is worse: attempting to potty-train one child who is becoming increasingly adamant about not wanting to use the potty and prefers to "finish it up in the Pull-Up" or having a twenty-month old who wants to potty-train at a time when I haven't gotten her older brother trained yet. Neither one seems like an insurmountable hurdle but when you add the two together it equates to me spending an unusually large amount of my tv-watching and bon-bon eating time in the bathroom with either one or both children sitting on the potties. And yes, we have a plural number of toddler potties in the bathroom. Add to the frustration that they are not alike in design or colors and the result is often two toddlers with pants around their ankles fighting over who is going to sit on which potty chair. These are indeed the joys no one tells you about before you have children.

In other news, I am kicking myself right now because Reiss said something so incredibly funny this morning that he almost had me in tears I was laughing so hard. I took a mental note to remember what it was so I could blog about it this afternoon, but alas, my memory just isn't what I wish for it to be and I have no humorous story to share. We were reading some book of theirs when it happened and I do remember which book it was so perhaps I'll get it out to jolt my memory later when my breast isn't hanging out and serving as a human pacifier to a sleeping toddler. Yes, I'm that way. If she falls asleep and I'm sitting at the computer reading or typing, there she stays. She's happy. I'm happy. And most important, she is asleep. So I'm a bad parent....who isn't?

Wednesday, June 24, 2009

Smiles and Scissors

I got him to smile on demand! Woohoo!!! Progress...

Another day, another disaster. Notice the center of Milla's dress around her belly area? I'm convinced this is why God makes our children so cute - so we can't stay mad for long...even when it is one of Mommy's favorite girly dresses on her baby girl. Any ideas for recycling and/or repurposing a beautiful Gymboree dress are welcome HERE.

By the way, the scissor incident did not happen on my watch.

Monday, June 22, 2009

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.

Wednesday, June 17, 2009

Mall-walking Wednesday

This morning Milla and I went mall-walking. Or to be more accurate, I walked and she rode in the stroller. At times she was dancing like a wild woman while at other times, she sat munching on animal cookies (GFCF, of course!) and watching intently as the "mallies" showed up for work. If it weren't so obvious, I'd probably stare too, as some of them take on quite interesting appearances. No one really takes notice if a toddler as young as Milla practically breaks her neck to get a good look at something unusual but I fear the flogging that may result if I were to do the same.

What used to be a weekly attempt at some form of physical activity for me has now become the exception rather than the rule. Typically, I walk with my friend, Carol, but anymore quite often one or both of us has something going on where we can't make it. One week it could be a crying toddler who won't calm down. Another week it might be another toddler who just created a half-hour's worth of poopy mess to clean up. Call it an excuse to get out of walking, but I am not leaving the house in such a state simply in order to make it to the mall in time for walking. And still other weeks it may be that one of us is in the Dominican Republic or Mexico or the East Coast or Florida or anywhere but in boring old Indiana walking in the mall. That would be Carol, not me. You all know I don't live such an exciting life of travels. And while we're on the subject of not being present for our always exciting tour of the mall, where were you this morning, Carol? Lying in bed while I sweated my buns off in the under-air-conditioned mall? Isn't that the whole reason we began walking in the mall too? Because it's supposed to be air-conditioned?

Before Reiss was diagnosed with autism, and at a time when I was constantly asking other moms how they entertain their children, someone told me to let Reiss play with a tray of rice, pasta, or dried beans. We did this quite a lot and when Reiss would reach a point when he grew bored of whatever food medium we were using for his entertainment, I would switch it up and move on to something else. We went from rice to macaroni to spiral pasta to beans and then he grew tired of all of it and we didn't play with our food for quite some time.

It wasn't until Reiss began preschool months ago that I was exposed to the concept of burying little trinkets and toys in the food. What can I say, I lack creativity and quite frequently the obvious totally escapes me.

Reiss' preschool classroom had a table that I am guessing was originally made to be used as an elevated sandbox for outdoor use filled with colored rice and various items buried within it.
After several failed attempts to describe the table, and of which said attempts have been deleted, please go HERE to see a table similar to the one for which I cannot find the words to provide a good visual. Seriously, where are those descriptive writing skills today that a bachelor's degree and several years of busting a hump supposedly "prove" that I possess?

So back to the table...After realizing this sand table in Reiss' preschool classroom was full of rice and toys, I got the idea to create a similar setup at home, only in a bowl. I re-purposed a bowl once filled with organic shortening into a rice and critter archaeological dig. Reiss and Milla get a lot of busy time out of digging around in the rice for bugs and frogs and yes, the occasional tidbit of leftover potato chip or dehydrated mango from whenever the rice got swept off the floor from a previous play session.

This morning I brought out our little portable archaeological dig for Milla to explore.....

I will confess to that indeed is food around Milla's mouth. We were eating lunch while digging for critters. I'm a bad mommy. I don't always make them sit at the table for breakfast or lunch. I also don't fret about wiping mouths off to bring out the camera when we're having so much fun. Dinnertime is a different story. It's at the table and no tv's, radios, or toys are allowed. Anyhoo....I think it's safe to say Milla was having a good time.

Monday, June 15, 2009

A New Look

Yes! Finally!!!

I have finally revamped the look of this blog. Honestly, I don't know what took me so long. Probably just my ignorant belief in doing so would require a lot of "know how" that I do not possess. However, it was so incredibly simple, and because of that, I'd like to thank The Cutest Blog On The Block for offering adorable FREE backgrounds and making things so easy for the dummies out there by providing detailed step-by-step instructions that even I could not mess up.

If I do say so myself, the monkeys are quite fitting for a blog about my two little nutballs.

Autism: A Parental Extreme Sport

As my family continues on this journey into the Land of Autism, I am forever challenged with finding a truly accurate response to the question of what our lives are really like, as asked by parents of neurotypical children. Instead of trying to put it in my own words today, I encourage anyone reading to follow the link below to Life as an Extreme Sport, by Sierra Ansley, guest writer on The Age of Autism and a parent to a child with autism spectrum disorder.

Life as an Extreme Sport

If you choose not to follow the link, allow me to point out the one thing that struck me most in the article. It is the way the writer describes life for a spectrum parent:

"...ASD takes no breaks. It's 24/7, including evenings and weekends. You can't put it on hold for a while to catch up on sleep or get the house clean. It's relentless."

I couldn't have said it better, and believe me, my attempts are numerous. It is something I wish I could get across to a few particular individuals without them making the accusation that my family's lives revolve around autism - as if this is some fault we can avoid. When a person is thrown head first - and with a level of ignorance, I might add - into a situation such as ASD, how can he be expected to not focus on educating himself and living moment to moment revolving around how to make the best of the circumstances?

Saturday, June 13, 2009

What NOT To Do....

As autism becomes more and more common, with it come greater odds that each and every person reading this blog will at some point in their lives be affected by it. It may be one's own child, grand-child, niece, nephew, student, a friend's child, or anyone else we come across in life.

Current statistics estimate 1 in 68 families in the United States has at least one child affected by autism. Depending on the information one reads, I have seen autism estimate rates said to be 1 in 151 children to all the way as high as 1 in 60-something children in certain areas of the country. (And the CDC adamantly argues that we do not have an epidemic on our hands! Bull-oney....but that's not why I am posting today and with any luck, I won't go off on a tangent about that.)

Because I know not everyone reading this has yet been affected by autism in some way or another, I would like to offer my two cents worth of what I wish more people around me would have known as we began our journey into the land of autism. The more people I meet who have children diagnosed with autism, the more often I hear stories of how parents discovered their own child's detour on the journey of having a typical childhood. Furthermore, the more online research I do on my own, the more often I see people on parenting message boards advising parents to consult their pediatrician with concerns about autism or developmental delays. Surprising as it may be to many people, in our case, it was not our pediatrician who clued us in on our son's developmental delays. Nor was it the pediatrician who gave any indication of possible developmental delays to a single one of the parents of other children I know who have autism spectrum disorder. Sadly, I am not surprised by this at all.

Pediatricians generally schedule their appointments in ten or fifteen minute increments for each patient, with some of them even double booking - just in case. Really, what do they think they are - an airline?

With that said, ten minutes is barely enough time to perform the basic tasks expected of a well-child appointment let alone get into an in-depth discussion on whether the child is developing motor skills and behaviors at the same or similar rate as his or her typical peers. I vaguely remember bringing up a few concerns to our doctor regarding Reiss and his quirks, as I called them back then, at a few of those well-child visits only to be told that all children develop at a different rate and all children have their quirks. I can only imagine how my husband and I would be the only people in America not affected by the economy if I had a dime for every time someone gave me the "All children develop at a different rate" line or the other one I hate, "Oh, that's normal for children that age."

So....rule number one: If you think your child or a child you know has autism, please don't depend on the family doctor or the child's pediatrician to have any idea of what may or may not be going on with the child in regards to developing.

I know what I am saying contradicts the main purpose of well-baby and well-child visits - to make certain a child is hitting milestones and developing at a typical rate. I also know it may sound like I have a distrust in the medical community and for the most part, I do, but consider this: On any given day, the number of children these doctors and pediatricians see amounts to an average-sized elementary classroom full of children. Some of those children have a serious illness but for the most part, many children are there because of a runny nose and the parent wants it fixed.....now.

Is it any wonder pediatricians miss so much? When they see so many children each day and spend such a small amount of time with each child, many of whom have parents who over-react to the smallest illnesses more often than not, I can easily understand how it would be difficult for a mainstream pediatrician to weed out the legitimate concerns voiced by parents and distinguish them from the more commonly proclaimed trivial matters.

So if we can't count on a doctor - someone who is supposed to be trained in detecting problems - to offer guidance in determining whether or not a child is developing properly, who can we count on? Ourselves. We can only depend on ourselves and the people in our children's lives. We are the ones who spend countless hours with our children and really know them inside and out. We can usually predict the outcome of a situation before our child reacts. We know their likes, their dislikes, and their quirks too. We know when something just "isn't right."

When James and I began to think something was going on in Reiss that just "wasn't right," we talked to probably every person we knew who has children or in some way has experience with children. With the exception of one person, everyone we talked to chalked up our concerns as being "normal." Unfortunately, we did not listen to the one person who advised us to contact our local early intervention office to have Reiss evaluated for developmental delays.

Fast forward approximately a year and we finally decided we were no longer going to discount our concerns about Reiss as being simple quirks and totally normal for a child his age. By this time, he was nearing the age of three and that's the cutoff for early intervention services. Our next stop was the public school system.

I'm not going to go down this road today and explain how we got from Point A to Point B of where we are today but the point I do want to make is this: If you are someone who knows a child with behaviors that seem out of the ordinary, confide this to the parent if you are on that kind of level with them - but do not tell them, "Oh, that's normal" if they voice concerns to you. If you think your own child has any kind of developmental delays at all, do not depend on your pediatrician to give you a kick in the pants on getting your child help. Contact professionals who specifically deal with this type of thing daily. If you don't know who to contact, ask your pediatrician. Most likely they do not know autism when it's sitting right there in front of them but they can probably help with dispensing the contact information for those who do know it when they see it. The worst thing that can happen is your child has an evaluation and his or her quirks turn out to be just that - quirks.

Wednesday, June 10, 2009

Boogers, Bottles, and Breakfast

Just a random photo of Reiss looking at the camera when the lens shot. He's a tough nut to crack. Sometimes he loves getting the camera out and taking pictures. Other times it's like pulling teeth to get him to look at the camera for a photo.

The above was the scene of the following conversation between Reiss and myself:
Reiss: Is that a burger?
Me: I don't know. Is what a booger?
Reiss: (pointing at the wall where this photo was taken) That!
Me: (Sigh) Yes, Reiss. That's a booger.

I still don't know who the guilty party was. I'm pretty certain it wasn't my husband because the booger was (eeeuuuwww) fresh when I wiped it off the wall and James had been at work for a few hours. I know for certain I didn't do it so that only leaves two monkeys as the possibilities. And since Reiss was the one asking, I'm gonna go out on a limb and say it was Milla.

At any rate, yuck! But oh, the joys of parenting. Somehow, these were not the kinds of things I envisioned B.C. (before children) whenever I sat daydreaming of being a mommy and chasing around a houseful of toddlers.

No, this is not the result of a drinking binge and a late night craving for...onions and potatoes??? No, this is what happens when one has a cordless phone that is a piece of c!@& and the battery constantly goes dead, regardless of how much you leave the handset on the charger.

The phone rang this morning and I had to pick up the call on the kitchen phone attached to the wall (yes, they still make those - believe it or not!) because the cordless phone's battery had gone dead earlier in the morning from a previous call. As I was on the phone giving out my insurance information and everything but my blood type to a compounding pharmacy that receives way too much business from us, Milla decided to empty out the cabinet where I keep the potatoes, onions, and garlic bulbs.....and well, a bunch of liquor bottles.

Honestly, I don't know why that stuff is even still in there. I can't tell you how old it is or how long ago anyone dispensed anything from a single bottle in there. My husband and I are way past our wild years. The strongest thing my husband ever drinks is orange juice and....just orange juice. He has never been one to indulge in "spirits." The strongest thing I drink anymore is a beer now and then - and only one beer.

Okay, maybe I go in phases where every day is what constitutes "now and then" but really, it's only one beer and I do only drink it for the taste. Years ago, I lived in Germany and now consider myself somewhat of a beer connoisseur. I like to try different brands and types of beer. They are almost always dark and they are always bottled. The thought of canned beer conjures up visions of bare-bellied Nascar fans hooting and hollering away their afternoon in the in-field at the Indianapolis Motor Speedway and frankly, makes my stomach turn just thinking about it.

I am currently in one of those every day "now and then" phases but that will come to a halt in about a week and half when the fridge is empty of all bottles. I love my dark beer but it loves me too much and is preventing me from losing weight more quickly.

Anyhoo, here is the guilty party to the pantry raiding incident. She doesn't do a very good, "Who? ME? Are you kidding???" look. Sorry, Milla....you're GUILTY, as charged!

This has been my breakfast the last two mornings in a row. It's three eggs scrambled with cut up sun-dried tomatoes and baby spinach leaves.

Several years ago, I worked at a small mom~n~pop restaurant that was actually a friend~n~friend business. It was a small cafe called The Lonesome Pine Cafe and was owned by two ladies a few years my senior. It was probably one of the worst-paying jobs I ever had but what I got out of it was so much more valuable than money. I worked with and for people who became good friends. I gained experience in cooking some darn good soups and other recipes, and although I did quit partially because I got burned out on it, I can honestly say it was one of the best jobs I ever had.

It was at The Lonesome Pine Cafe, which was named such because of its somewhat out of place and rather large single pine tree growing in front of the building housing the cafe which was located on a busy city street, that I learned to make quiche. My friends, the owners, used a very basic recipe as a basis for different types of quiche. It's a very simple combination of ingredients and I have it memorized to this day (more about that in a minute). One type of quiche we used to serve was Spinach and Sun-dried Tomato. This was my favorite and I've been craving it quite a lot lately. I contemplated getting all the ingredients for it but doing so would be breaking rules for our gluten-free, casein-free way of eating these days.

Instead of breaking any GFCF rules and for the sake of keeping my own weight-loss plan intact, I decided to opt for just the main flavors I had been craving and went with the spinach and sun-dried tomatoes. Below you will find the recipe for the real deal of what we served to customers.

Spinach Sun-Dried Tomato Quiche
5 eggs
1 2/3 cup half~n~half
sun-dried tomatoes
baby spinach leaves
swiss cheese shreds
1 pie shell

Combine the eggs and half~n~half, whisking until well blended. By eye-measurements alone, add in the tomatoes, spinach, and swiss cheese. Whisk and pour into the pie shell and bake at 350 until just set.

The eggs and the half~n~half are the same measurements we used for all the different combinations of quiches served at The Lonesome Pine Cafe. It is very versatile and I've never used this recipe with any type of ingredients that didn't work well in it. If you have a grandma who can make your pie shells by hand, like we did at the cafe (this was the sole restaurant-related task one of the owners' mothers), all the better. If you want to try this recipe and are eating a low-carb diet, just eliminate the pie shell - the filling is just as good on its own.

By the way, I am not sharing proprietary recipe secrets here - I would never have given out this recipe years ago. Unfortunately, The Lonesome Pine Cafe - to the dismay of a good size following of customers - went out of business about three years ago. Sadly, the owners could not keep up with the competition and keep their prices competitive unless they switched to a much lesser quality line of ingredients. Guess people just preferred going elsewhere and eating frozen pre-made stuff sold at nearby franchises, rather than eat "from scratch" dishes made with excellent quality fresh ingredients, a grandmother's touch, and a lot of love.

Sunday, June 7, 2009

A Wedding and a Wading Pool

When James sees this photo on here, he will probably break into my blog and delete the HTML for this photo but oh well...I think it's a pretty good pic of him. (Don't tell him I told you, but he's wearing a pair of child's Spiderman sunglasses.)

Milla is becoming quite a little ham for the camera and will often smile on demand these days. Notice Reiss now has the Spiderman sunglasses?

Milla splashing around in the pool and the tips of my gnarly feet. I have never been for a pedicure before but I'm starting to think my time has come.

This must have been around the time when our neighbors walked over. Milla just loves our little neighbor boy, who is a week younger than her. They always share the most adorable hugs and kisses when they get together. I'm wondering at what age exactly do I need to start monitering that behavior...????

A rare moment caught with Reiss actually looking at the camera...

Quite often, this is the face Reiss makes when told to smile for the camera. Usually, it doesn't include quite so much tongue...but this made me laugh so I had to post it. This photo was taken at the wedding we went to yesterday. More on that in a minute.....

Someday, we will have photos of us all smiling and looking at the camera when the lens shoots. However, that day was not yesterday.

I don't normally post many photos with me in them because it somehow feels vain, even if this blog is about my family, but here is one for those of you who have emailed me or made comments that you never see any pictures of me. This was also taken at the wedding.

The only photo we have of James at the wedding yesterday is one in which he is about to say something and as a result, makes him look angry. In it, Milla is also crying and Reiss is actually looking at the camera. Go figure...At any rate, it wasn't a good pic so it's not on here.

The 9:30 a.m. wedding that I went on and on about on here on Friday was actually supposed to be a 9:45 a.m. wedding that ended up being closer to 10 a.m. The wedding and reception hall were out in the middle of nowhere. Seriously, I kid you not when I say that we were stuck behind a combine that was wider than both lanes of the tiny little country road we were travelling on for a few minutes on our way to the wedding.

If our country is ever invaded, that place is where I want to be, as we were barely able to find it ourselves - I'm sure someone invading isn't going to find it. The directions were wrong. Yes, they were wrong. It was not that we were wrong. The directions were wrong and said to turn on a road that didn't even exist. Amazingly, we still got there and on time.

The bride and groom not only wrote our children's names on the invitation, but also encouraged us to bring them when we saw them recently, stating that, "There will be tons of kids there." There weren't. There were no children Milla's age and maybe three who were Reiss's age, two of whom were in the wedding itself. By the time the wedding got started, Milla was "over it" with all the waiting and so she and I got up and walked around. Luckily, we were in the back row and the wedding was outside so doing so was not a disturbance or anything tacky. Not long after we got up, James and Reiss did so as well.

I didn't get to see any of the wedding. James got to see a few minutes of it. We then waited for the wedding party to come into the reception hall. More attendees began coming into the reception hall and we were all waiting. We waited. And waited...and waited...and waited. Meanwhile, the DJ told everyone to go ahead and help themselves to the breakfast buffet (it was now after 11 a.m. and James and I had had nothing to eat at all). So we all did and we waited for the bride and groom to come in to sit at the wedding party table. And we waited and waited and waited. And waited some more.

They never came in and finally I asked my sister-in-law where they were and she said they were doing the wedding photos. Okay....great. But seriously, I have never been to a wedding where it took so incredibly long. And if I sound like I think this event was all about me, I don't mean to. It's just that when you go to a wedding you typically think you're going to at least see the bride and groom at their own reception, right?

Finally, a little after 12 p.m. Reiss and Milla couldn't take being there any longer so we said our good-byes to the family members around us and went outside to leave. As we were walking to the parking lot, I saw my nephew (the groom) and told him we were sorry that we had to leave. He said that they were still doing photos and he was sorry they were not inside yet.

I'm not sure which I was more shocked by....the fact that the photographer was taking so many photos OR that the reception hall (I was told) was supposed to be emptied out by 12:30....meaning the bride and groom would not even get to be at their own reception because they needed to be out of there before they were even done doing all their photos.

Whatever. I wished I had gotten a sitter to watch Reiss and Milla. Perhaps I would not have been so frustrated by the getting lost getting to the middle-of-nowhere reception hall, the fact that there were no children there after all, the fact that we had to leave before getting to see the bride and groom....blah, blah, blah.

I'm sure it was a wonderful day for the bride and groom. They both looked awesome in their wedding duds and what little I did get to see of them, they looked very happy together on their big day. The bride wore an unconventional tea-length cut dress. It reminded me quite a lot of the many photos I have seen of 1960's brides with their something-other-than-full-length dresses and wavy styled hair.

It really was a good day....I don't want to sound like I'm raining on their parade. But I am glad it's done and I no longer have to worry about being lost in the Indiana countryside with combines blocking the road in front of me and banjo music playing behind me.

And in case anyone is wondering, Pancake Saturday became Pancake Sunday this morning, if only for today.

Saturday, June 6, 2009

Middletown Centre for Autism Quarterly Research Bulletin

I have had sight of the much awaited first issue of the Middletown Centre for Autism's Quarterly Research Bulletin (May 2009). Thanks to teacher friends of mine, a photocopy of the original photocopy was forwarded to me. No glossy paper here, just a colour photocopy.

It also seems the Middletown Centre for Autism staff are not computer literate otherwise the bulletin would have been linked on their one-page website. Considering they have wasted seven million pounds, it might be prudent to find ways to save money on postage costs.

I wish my friends hadn't bothered showing me this piece of trash. There are so many other pressing issues to cover than this, but after reading the A5 (4page) piece of disappointing irrelevance, I had to comment.

The 'bulletin' is prefaced with a letter from the CEO of Middletown, Mr Gary Cooper, thanking those who contributed to the content (the monkeys at Belfast Zoo were chuffed).

The remaining 3 pages of the photocopied 'bulletin' contain 5 abstracts. Four of these are from the same journal and same volume of that journal (Journal of Autism and Developmental Disorders, Volume 39. )

The link to the said journal is not provided in the Middletown publication so I will provide it to you here - see: www.springerlink.com/content/0162-3257. I don't know how much the Head of Research earns per year, but the more recent job description for a Research Officer paid up to 28,000 pounds. see: www.nijobs.com/clients/middletown/FinaladvertisementAgreed27thFebruary2009.pdf for a description of some of the jobs that were on offer at the Centre. For the researcher position, the job description clearly states the incumbent would have to have experience of producing high quality research. This didnt happen here.

Pulling four fifths of content from one journal does not a research bulletin make. This is called scanning a journal and copying and pasting abstracts onto a piece of paper.

In his covering letter Mr Cooper states six referenced pieces of research are included in the bulletin, yet only five abstracts are actually shown. No proof readers at Middletown? These are the people who want to 'help' our children? Is this bulletin an indication of the level of 'professionalism' at Middletown Centre for Autism? The stakeholders at the Centre were touting it as a potential research centre. As this bulletin is an expression of the Centre, a calling card if you will, my doubts about any real research coming out of the centre have been totally and officially confirmed. Whoever produced this trivial piece of fluff should be fired.

The selection of research used in the bulletin, according to Mr Cooper, "reflects interests and issues that have been identified to the "Centre's Research Department through the Public Consultation carried out last year and also the Centre's ongoing training work."

The titles of the abstracts included are:

1. Restricted and Repetitive Behaviours, Sensory Processing and Cognitive Style in Children with Autism Spectrsum Disorders;
2. Sensori-motor and Daily Living Skills of Pre-School Children with ASDs;
3. Qualities of Symbolic Play Among Children with Autism (not included in the bulletin)
4. Decoding Representations: How Children with Autism Understand Drawings;
5. Transition from School to Adulthod for Youth with ASD's;
6. Comparisons of Eating Attitudes between Adolescent Girls with and without Aspergers Syndrome.

I find it very hard to believe that those parents who were consulted by the Centre (were there any parents who were consulted?) expressed that the issue of eating in adolescent girls was a huge problem, over and above all the other problems we as parents face. Also none of the research abstracts addressed adults with ASD's. We cannot forget that our children's childhood is very short-lived, that they are all rushing towards adulthood.

As a parent who makes it her business to scan, read and discuss research on a daily basis, this bulletin is not only a joke, it's a disgrace. I presume it is Mr Gary Cooper's responsibility to vet any bumpf emanating from the Centre. Clearly he did not read this piece of junk. What is even scarier, is that I believe he did read it. His name is on the front page together with his own welcoming letter and signature.

He states at the bottom of his letter that he looks forward to receiving your comments and suggestions.

As a parent, here are my comments and suggestions: -

First get yourself a researcher, someone who knows how to find research and knows how to determine the relevance of that research to the issues surrounding autism both here and elsewhere. Find yourself a researcher who can read more than one journal at a time. In fact, please give me the name of your researcher so I can advise her/him/them myself how to engage in researching, where to look for it, and how to disseminate it.

Second, with the over seven million pounds already spent on the Middletown Autism Centre, this bulletin, needed to be twice as long, printed on glossy paper and should have contained research that is relevant to those who might read it. Where are the connections/relevance between the presented abstracts and what parents need/want? The abstracts cited just sit there on the page. I am laughing as I write this, it is just too weird! Who could possibly glean anything useful from these four pages of regurgitation?

Third, hire a proof reader. Six research abstracts are cited, only five are printed.

Fourth, this 'bulletin' is not a research bulletin. Someone from your centre bought one journal and pulled four articles out of it, and printed them. Fair play to them, because they at least did look at one other journal to pull the other abstract from. But its not a research bulletin. A better name for it would be 'I had some time on my lunch hour journal' or, 'my job description says I have to do a mail-out' but this is NOT research.

In Gary Cooper's 'welcome letter' he states that the Middletown Centre for Autism has a number of online journals. He suggests that groups and individuals are welcome to come to the Centre and access the journals with prior notice. How kind of you, considering our taxes paid for these journals. I will arrange respite and hop in my car and spend 20 quid on petrol just to come and access your wonderful journals. I am sure the Centre will be inundated with other like-minded parents and teachers who have nothing better to do.

Why aren't these journals made accessible online for free via the one page Middletown Centre for Autism website?

Mr Cooper states the centre's library is currently under construction. I presume that this is a euphemism for 'we don't know if the shit has really hit the fan yet and we are hedging our bets until it is absolutely official, or until Catriona finally throws in the towel).

Considering funding was halted mid May, no mention was made in the newsletter of this fact, in fact no update on the centre is provided. It must have taken all of five minutes to put the newsletter together and it was sent out, I believe, well after the funding was dumped.

All in all, my son who has autism has created better documents than this one, without trying and without having been paid a hefty wage to do so.

I would be eager to hear from Mr Cooper what the public response has been to it.

Please make sure you get your own copy and provide your comments by contacting Middletown Centre for Autism by contacting them at: 02837 51 5750. Or email them at: admin@middletownautism.com.

The mind boggles. Seven million pounds has been wasted on this non-existent centre and hardly a whimper from the public or government.

Something stinks to high heaven here.

I wonder if Catriona Ruane has seen the research bulletin and if so if she is still lauding it as something special as she did in Stormont recently. Yet, what does Catriona Ruane know about research or autism?

Until parents speak out about the travesty that is Middletown, until parents wake up to the fact they and their children have been hoodwinked, money will continue to be wasted. Our children will continue to be forgotten and ignored.

One thing is for sure, very little money was spent on the first edition of the Middletown Centre for Autism's Quarterly Research Bulletin.

I have forwarded a copy to others, both here and throughout the UK. A resounding ' appalling' is their response. I think they feel sorry for me that I live here. But moreso, are stymied as to how 'they' got away with it.

That is a very good question.

Friday, June 5, 2009

Finally Friday!!!

Hello, my little neglected blog! I have not purposely deprived you of my passion for writing these last few days - it's just that it's finally Summer here in Indiana. Well, not technically if you look at the calender, but if you go by the weather alone, the warm temperatures have finally arrived and are hopefully here to stay for a few months time.

Reiss is out of school for the summer and we are busy already. Between playgroups and therapies and everything else we have going on, we are going just about every day. Not all day or even every day but a lot of the time and it makes the time fly by. This week seems to have passed in the blink of an eye.

One day per week Milla has speech therapy and we both love her therapist, Miss Laura. Miss Laura pulls up in the drive in her SUV that's "just like the Mommy truck" as Reiss calls it. She unloads her bags of toys and puzzles and learning activities and comes in to have Milla immediately pop a squat in her lap. They click so well together that it only serves as a reminder of how lucky we are to have chosen someone who does such a great job. I hear from other mothers how they went through ____ (fill in the blank) therapists before finding the right fit for their own child(ren). Had I done a "Thankful for Three Things Thursday" post yesterday, this would have been something worth mentioning.

Reiss is also doing a therapy of sorts in a group setting. A friend who has two sons with ASD has a therapist come into her home to do ABA therapy with her youngest son who is a few months older than Reiss. The therapist comes one day per week for one-on-one therapy and then another day for therapy with other children present. We go on the day when the therapist is there to perform group therapy. We only started going this week but I am very optimistic and looking forward to seeing the benefits Reiss will reap from this type of setup. Not only do I get adult conversation and a mommy break, but the therapy is free of charge for us since it is my friend who is being charged. (In my defense, I did offer several times to compensate her for some of their charges but she refused.)

Tomorrow we have a wedding to attend at 9:30 a.m. No, that is not a typo and yes, you read right. Nine-thirty. In the morning. On a Saturday. Seriously, who gets married at that time? Need I say more? Probably not. But I will.

This is my nephew on my husband's side of the family who is getting married. I made a comment about the time of the wedding to my husband, who then made a comment to his mother, who then made a comment to my brother-in-law (her son), who said that the time of the wedding is because the bride's mother was making all the wedding arrangements and in order for them to get the "lower rate" on the wedding and reception hall, they had to make the time of the arrangement in the morning.

Ooooookaaayyyy.....Now anyone who knows anything about me knows I am all about saving money and stretching a dollar so tight it will flip you in the head when you let go of it, but come on, is it really necessary to be such a tightwad when doing so comes at the inconvenience of so many others involved? Really, how much of a savings could there possibly be? And I know we can't be the only people who think this is an absolutely ridiculous time for a wedding so again, I ask....SERIOUSLY, who - in their right mind - gets married at that time?

Guess we won't be having "Pancake Saturday" (for the first time in nearly four years!) tomorrow morning.....

Monday, June 1, 2009


No wonder John Grisham so often portrays Indiana as the butt crack of America in his books. It's people like THIS who give my state such an image. Honestly, if it was not so darn funny, I'd be more than just embarassed to share this story with those living on the outside.