Friday, July 31, 2009

Milkshakes and Product Reviews

Last night after dinner we took a short drive out to go scavenge some bikes out of someone's trash pile that James had noticed on his way home from work yesterday. I'm always a sucker for anything free that is in any condition to be recycled or reused. There were three bikes there but we only took need to be greedy - I just hope someone else did get the third one before it met a trashy destiny.

And yes, you can rest assured knowing that they were indeed someone's trash and not just some bikes the children living in that house had parked by the trash, as James had to remove some mangled tomato cages and rotted lumber to get to them. I feel I have to mention this because it never crossed my mind that someone might actually think we would just take some children's bikes from a stranger's curb. However, it must have crossed at least one person's mind because when I posted on my Facebook page about our trash-picked treasure and how I absolutely love heavy trash day, a friend posted "I hope those were really set out for trash! lol" Yes, Jen, they were in a pile. And we rescued them.

So what in the world does this have to do with milkshakes?

After completing our task of being the neighborhood nuisances by picking through others' trash pile, we were driving home when out of the blue I asked, "Who wants milkshakes? Raise your hand!" This was totally spur of the moment and I wasn't even certain if we had the right ingredients on hand to make them. To be accurate, I knew we had milk replacer (since we do not do dairy) and GFCF chocolate syrup but I wasn't terribly sure we had any ice cream - just the main ingredient - no big deal, right? Way to dangle a carrot in front of a four-year-old, hunh?

It ends up we did have ice cream, thank goodness. Since making such drastic restrictions to our diet around eight months ago, I've not made milkshakes. Smoothies, yes. Milkshakes, no. So where the thought to make milkshakes came from is beyond me.

Here are the ingredients I used, their specific brand names, and a brief review of each. They are in no specific order and please don't ask me the measurements. When making something simple like this, I just wing it going solely by the look of things! By the way, I am not being paid or compensated in any way to tout the benefits of the products.

AH!LASKA Organic Chocolate Syrup - This isn't Hershey's but it's pretty darn good. Considering it's organic, gluten-free, dairy free, and "free" of a few other undesirable ingredients, it's actually better than Hershey's in some ways. I do feel I use more of this than regular Hershey's or store brand syrups though and at more than $5 per bottle, that is somewhat of a drawback. Overall, it gets a thumbs up and hey, I'm getting pretty used to spending a lot of money in order to stick with our dietary restrictions. What's another five bucks for a bottle of chocolate syrup? It still beats the price of getting an ice cream treat out and about somewhere.

Purely Decadent Coconut Milk Ice Cream - Technically, this product is not called ice cream. It's a "non-dairy frozen dessert." But how appealing does that sound? It is made with coconut milk rather than full fat dairy cream. In my opinion, this stuff is better than real dairy ice cream. It is so incredibly rich and yummy.

This makers of this product claim it is "dramatically lower in fat, calories and sugar than most premium ice creams" but honestly, I wouldn't know because I don't know about you, but I've never actually looked at the fat count, calorie count, or sugar grams on any regular premium ice cream packages. Most times when I have eaten "premium ice cream" it has been to satisfy a craving, not to see how much of it I could eat without expanding my waistline. That said, this ice cream is awesome and it contains a healthy dose of fiber! How cool is that? Fiber in ice cream! Does it get any better than this?

Depending on where I purchase this product, I pay $4.99-$5.79 per pint. Not cheap, but not really any more expensive than other "premium ice cream" pints in the grocery store. My gripe? There aren't very many flavors. The vanilla bean flavor is spectacular though, and even better than the chocolate flavor. That's a lot coming from someone who would choose chocolate anything over vanilla any day.

DariFree Non-Dairy Milk Alternative - This milk replacement product is gluten-free, dairy-free, soy-free, as well as "free" of many other commonly avoided allergens. It tastes great on its own and in most recipes. I have found it works great for baking but does not taste so great in some savory dishes. I can use a little of it in mashed potatoes without tasting strangely, however, the results were not quite as stellar once when I used a tiny bit in some eggs for scrambling. Let's just say I'm sure the raccoons living in the woods behind our house thought they'd died and gone to heaven when they awoke that evening and went scavenging for some midnite munchies.

DariFree isn't just an ordinary milk replacement product either - it packs a hefty punch in the way of vitamins and minerals. Although its main ingredient is maltodextrin derived from potatoes, it is surprisingly low in sugar grams at only two grams per serving.

If you purchase this product in 25-pound bulk containers from the manufacturer (in the link above), the savings are more than worth having to pay for shipping over buying it by the canister from a local retailer.

Last ingredient for the milkshakes? Ice! No link needed - just look in your freezer!

Thursday, July 30, 2009

No Free Advertising!!!

It pains me to have to post this but I guess my number has come up in the lottery....

Advertisements posted as comments on this blog will be DELETED.

Wednesday, July 29, 2009

A Birthday Wish

Happy Birthday to me!

There was only one thing - well, depending on how you look at it, it could actually be counted as four things - I wished for on my birthday: No poopy underwear, no bloody noses, no vomit, and no children standing on chairs and peeing on carpet and dressers after de-pantsing themselves in their room. All those were things I experienced yesterday and, aside from the peeing on the carpet incident, are things I can generally count on experiencing on a near-daily basis. Yes, I know, I lead a glamorous life.

When I posted my birthday wish to my friends on Facebook, one friend commented, "...if you want a day without those things--well just learn to control yourself a little better, ok?" That gave me a pretty good laugh. (By the way, thanks, Gabe! You have always been quick with the humor.) Anyway, we are doing pretty well so far. That is, if you don't count the poopy underwear Reiss had earlier this afternoon.

The kids' pediatric dentist must have known it was my birthday because a few weeks ago his office staff sent us the postcard notifying us of our next scheduled appointment for these two offspring. And guess when they made our appointment? Yep, you guessed it - my birthday. So this morning we took Reiss and Milla for their appointments. Both had periodic oral examinations while Reiss received a prophylaxis and flouride treatment as well. All that is just a fancy way of saying the nice ladies in the office took Reiss back for fifteen minutes for a cleaning and flouride schmear and Milla for a three-minute (no, not an exaggeration!) exam all to the tune of $190 for both of them. You gotta love living in a country where dental insurance is considered a luxury! All I can say is it's a good thing our kids' dentist is so darn good-looking. There needs to be something to make it worth my while to go there on my birthday. Not to mention, something to make it worthy of me giving up any birthday money I may receive.....

We have not had any bloody noses, vomit to clean up, or chair-perching pee-ers, thank goodness! However, we have had an entire small size to-go cup from Wendy's full of Sprite get poured on the kitchen floor. The things that happen when you turn your back for three seconds! So adding to the celebratory occasion, I got the joy of mopping the kitchen floor.....on my birthday. Does the fun ever end? High fructose corn syrup Carbonated beverages are considered a treat in our house and the kids don't get them very often so if they pour it on the floor when they do, that's their loss - not mine. That is, if you don't count the money spent on the high fructose corn syrup beverage.

This afternoon, these two monkeys granted me with what I'm sure they thought was a wonderful birthday gift: refusing to take a nap. Guess they figured their awake presence was the best they could give since they are not of age to go out and independently by their dear Mom a gift. I axed that gift and put my foot down by putting them in their rooms to cry for awhile. Yes, I am the meanest mom. It was that or send them to our friends' house this evening to have them babysit two cranky, napless and hyper children while hubs and I go find some grub worthy of considering a birthday dinner. I chose relegating them to their rooms and now I sit here typing in blissful silence as they sleep.

Just another day in my glamorous life as a stay-at-home mom....another birthday....another day that seems as mundane as most days.

ETA: The UPS man paid us a visit today. Thinking he was bringing some birthday present my husband had ordered online, I left it on the porch for James to fetch when he got home. It was a doozy, alright! It was a box of B12 syringes for Reiss. I can now be counted amongst the moms who get to jab their kid with a needle every few days.....starting on my birthday. Oh goody!!!

Saturday, July 25, 2009

Please Make These Thoughts STOP!!!!

I had this post all typed out and sitting as a "Draft" under my "Posting" tab on my Blogger dashboard and then realized that perhaps I may want to preface it with a few thoughts for those who don't live within the puzzle of autism on a daily basis.

Sometimes my posts may seem depressing. Do I realize this? Yes. Do I want to fix it? No. Life isn't always about grins and giggles and neither is this blog. For those who have children with autism, you know it is a long, long journey during the grieving process after having a child diagnosed with ASD. I am not bragging but for Reiss only having been officially diagnosed about eight months ago, I think I'm doing pretty darn well. I read blogs of parents who are further along than we are in this process and they are still grieving tremendously.

For those who don't have children on the autism spectrum....well, count your lucky stars and know that for many of us out there, not a day goes by where we don't have at least one moment during our day when we are reminded of something our children may never do. Is that to say I don't hope for the world for my child with autism? No, it's just being realistic.

If you have a child with autism, you know what I'm about to say isn't anything we spectrum parents haven't at least thought of, if not voiced. And if you don't have a child with autism, don't judge me. I am not a horrible person. Yes, I realize it is my child who is the real victim here, so please know that I also do not mean to sound like a martyr in all this. You have no idea what it's like to be a parent in my position.

Now, having said all that, here is the original post...........

Lately I have been having some strange random thoughts. You know how sometimes you just let your mind wander while you're doing the laundry or dishes or enjoying that blissful five minutes standing under the running shower water? Well, lately those little blurbs of time have me a bit troubled about the future. Reiss is what is considered "high-functioning" and while I do try to remain optimistic about his potential in life, I can't help but think sometimes about things like........

At age four, we are still potty-training Reiss. I do hope he will be potty-trained and soon but that also leads to the next step: Using the bathroom alone out in public. Generally, I don't pay attention to all the stares and whispers out in public that we so often attract when Reiss is being quirky or having a tantrum or, God forbid, being different than other children (that's sarcasm, people!). But what happens in a few years when Reiss is potty-trained and he needs to use the restroom out in public and Daddy isn't with us? Let's say he's ten years old and we're in the grocery and he absolutely cannot hold it until we get home. Then what do I do? I can't reasonably take him in the women's restroom but I'm sure I would not want him to go in a men's restroom alone either.

I know all mothers - even those of typical children - face this same dilemma of when to let their sons in a public restroom alone but Reiss doesn't have the capacity to tell me when something has happened. Maybe by then he will but it's one of those things.....

What happens if the school "fails" us?
It used to be that I had my mind made up in regards to my children's education and I knew I would homeschool. That was before autism. That was before I felt so inept at knowing how to teach my son simple tasks such as the proper way to hold a writing instrument. I know there are other parents of children with autism who homeschool and do it successfully but I feel lost in a vast sea without a lifeline. I feel like I don't have what it takes to educate Reiss myself and scared of what may happen if the public school system proves itself to be similarly incompetent.

Will Reiss always have "pronomial confusion?"
Many times - correction, make that "most" of the time - Reiss gets "I," "you," and "me" mixed up. James and I understand what he is trying to say because we have been around him and listen to him talk all the time. For the most part, we try to correct him. For other people though, it can be very confusing to distinguish between when Reiss is talking about himself and when he is referring to the person to whom he is speaking. He may say something like, "Why did I go outside?" What he means to ask is "Why did you go outside?"

Will Reiss ever have an interest in activities in which typical children - and even many children with ASD - are interested?
We can go to the zoo and I'm not certain Reiss even knows we are there to see animals. He is so easily distracted that we literally have to physically direct his line of vision to the animals and tell him what he is seeing.

He does not watch television. I know, to some of you, this is probably a blessing but before you go counting my blessings, think about all those times you are able to put your child in front of the tv for five, ten, or fifteen minutes so that you can take a shower, make a phone call in a relatively peaceful surrounding, pay some bills....or whatever other things one might do while getting a small break from their child. I don't have that.

Reiss' idea of a great time is changing his shirt multiple times per day, taking off and putting on different shoes, insisting that they be tied "too tight."

Reiss loves hanging all over Daddy or myself - practically smothering us with what I like to think of as love but it can sometimes be overwhelming when it is all the time. Is he still going to be doing this at 8? 10? 16? I love my children with all my heart but seriously, sometimes I just want to be alone or at the very least, without a child on my lap, on my breast, or touching me in some way. I am not kidding when I say I can probably count on one hand how many times I have gotten to use the bathroom in the last four years without there being at least one child in the bathroom with me. I could close the door but then I would have to listen to the fitful cries. And really, I don't know about you, but when I go to the bathroom, having to listen to the urgency of a child crying does nothing for me as far as relaxing and focusing on doing "Number 2."

Will Reiss ever understand there are times when we just need to be quiet?
Reiss has two operating modes: Asleep and Deafeningly Loud. I feel like we do everything we can to try to get him to be quiet sometimes. Having a conversation with my husband is next to impossible. Watching tv while Reiss is awake is impossible. Making phone calls during the day is next to impossible. Sometimes I would just like some quiet.

I'm not one of those parents who grieves thinking their son or daughter will never be the top high school jock or the cheerleading captain. I'm not hoping for Reiss to be President someday. He doesn't even need to act like a typical child for me to be happy. I would just feel a little more comfortable with some sort of normalcy in my life.

I'm not complaining.....please don't get me wrong. Sometimes I just wonder.......

Thursday, July 23, 2009

What Does This Look Like?

What does this look like to you?
I got it at the health food store today.

It's an organic double kiwi!

What? That's not what you said? Come on, now....Get your minds out of the gutter, you bunch of dirty birds! Sheesh....some people!

Wednesday, July 22, 2009

Milla Monkey and Her Barnyard

Remember a week or so ago I mentioned the fun fair/rummage sale we went to? I just came across this recent photo of Milla with her new-to-her Little People barnyard and remembered I mentioned the barnyard awhile back but never posted the photo of her with it. She is pictured here playing with it and her Little People zoo.

By the way, ignore her visible collar bones - she is very well fed and definitely not lacking any baby pudginess.

Monday, July 20, 2009

Man, I REALLY Don't Like Whites!!!

How's that for self-deprecation? Actually, it sounds pretty prejudiced against not only myself but the majority of people in my life. That is, until I tell you it has nothing to do with people and all to do with what I said as I was throwing a load of clothes in the washer this afternoon.

While Reiss was finishing up a load of poop in his Pull-Up (I detest trying to put him on the toddler potty after he has already started doing his business!), I decided to start a load of whites in the washer. It felt like I spent an eternity in the laundry room pitching dirty socks into the washer. Seriously, I'm on to the sock scheming of the men in this household (which consists of only James and Reiss) - they're either changing their socks every fourteen minutes or those little buggers are breeding in the dirty clothes bin.

Before all the sock business we, as in, Reiss, Milla, and myself, had spent the better part of an hour in the bathroom. We got home from the library and immediately Milla grabbed herself and yelled "Pee!" as she always does when she needs to go. And it's so cute, by the way. She grabs herself and yells "Pee!" and gets the most accusatory look on her face as if to say, "Oh no, the nerve that I, the princess, would be made to do something so incredibly unclean!"

We went in the bathroom and Milla did her thing. She got up and I got her all cleaned up and helped her wash her hands and then Reiss declared he had to poop. So then I got Reiss all situated and, of course, Milla decided she had to go again. I never know when to tell her she can't go just because Reiss is in there because many times when she plays this game, she does actually produce some results in the potty, despite the fact that she just got off the potty less than a minute or two before. This was one of those times. So I got her back off the potty while Reiss still sat there and sat and sat and sat. We sang the ABC's and Twinkle, Twinkle, Little Star and some other song Reiss was singing. I'm not sure what it was but it sounded like he was singing the words to the Menard's (a chain of large home improvement/hardware stores primarily in the Midwest) theme song to the tune of the Go Daddy website song. Danica Patrick would be proud.

Finally, Reiss got up and hadn't produced anything. He went about playing and sure enough, next thing I knew he was going in his Pull-Up. Anymore, he generally wears underwear under his pants or shorts and only wears Pull-Ups when he is a)sleeping at night b)napping in the afternoon or c)going somewhere. Since we had just gotten back from the library and he was going to be napping soon thereafter, I didn't bother to take off his Pull-Up. As I said before, I do not like to try to get him to the potty in "mid-poop" so I just let him finish it up. If we are to get him potty-trained before say, high school, I think I may just have to bite the bullet and deal with the mess even if it means pulling him to the potty mid-poop occasionally. And please, don't anyone try to reassure me by saying "He won't go to kindergarten in diapers." While I would like to be optimistic and believe that about Reiss, I also know of many moms of children with special needs who can attest to the fact that that is exactly how their child showed up to a diaper.

Enough about poop.....

Today we went to the library and if you read this blog even occasionally, you know this is a big thing for me. We used to go to the library all the time until one day I finally threw in the towel and decided I was done making trips to the library until Reiss either stopped running from me in public or until we got him a locator bracelet. He still runs from me occasionally and he doesn't have a locator bracelet (yet - although we are in contact with an organization to see about getting him one) but I am trying to be more bold these days in my attempts at making outings without hubs along to assist.

The library seems like it would be a rather harmless place to go except the one near us can be quite dangerous. Since I cannot draw a picture I will try to describe it the best I can. First, the outside of the library has a pretty large parking lot that surrounds two sides of the building in the shape of an "L." Getting into the library can be a challenge because it is ALWAYS busy and we have to park a ways from the entrance. Reiss has little to no concept of danger so I can explain all day why he needs to hold my hand and he will still say, "Wanna get hit by a car."

Going into the library, the entrance consists of two sets of automatic doors. Once inside the library, the children's section is off to the right. All the way far, far back at the very back of the children's section is a place for the children to play. There is a wide aisle in the middle of the children's section separating row after row after row of bookshelves. Typically, we try to stay in the play area. However, if Reiss bolts for the door going out of the children's section, he only has to make it out of that section and about another fifteen feet before he would reach the automatic doors going out into the parking lot where people seemingly feel they need to race by the front entrance as if they are in the Indy 500. Should he decide to do so, Reiss could do it all in a matter of seconds. Not exactly comforting when I have Milla to look after as well.

In summary, when you combine a child who loves to run (I can't hold his hand ALL the time!) with automatic doors exiting a building, and cars whizzing by as soon as one exits the building, it's like a recipe for Reiss Roadkill. Call me biased but that's not really something I'd like on the menu of a single one of my days. See why the library can be quite an endeavor for us?

Today was a little different though. Reiss did not run from me even one time and I was very proud of him. Maybe all my lecturing is starting to pay off. No matter where we go, we always have these little discussions with Reiss about the behavior that is expected once we reach our destination. It's hit and miss whether it actually works.

Furthermore, my Momma Duggar impersonation was right on tack today. That's what I call my attempts at gentle parenting or whatever it's called when the parent remains calm regardless of the situation. Honestly, I don't know how Michelle does it....I think the world could be falling down around her and she would still have every last nerve in line and under control and would have the energy and patience to calmly say, "Now, J....... (whichever "J" named child needed some behavior correction), we don't do that." Seriously, does anything rattle that woman? If I sound annoyed, it's only because I'm so darn envious that I don't seem to have the same patience within myself.

What a boring day....Is anyone still reading? How many people left after all the poop talk? If you didn't leave after that, are you still awake and reading my mindless blathering?

Thursday, July 16, 2009

I Do Not Like Stuffed Animals

Anyone who knows me at all knows I love, love, LOVE Gymboree clothes. And not because I have to have my kids in the latest kids' fashions but because of their quality. Ever since I learned about Gymbucks a few years ago, I have done my best to buy Reiss and Milla Gymboree clothes at the lowest prices possible. By combining their clearance rack prices, 20-30% off coupons they send me, my Gymboree Visa 5% discount AND Gymbucks, I am usually able to get Gymboree clothes at prices that beat those of KMart and Walmart for children's clothing of lesser quality. Please don't think that makes me a snob - I just love that Gymboree clothes keep going and going and going just like the Energizer bunny.

Gymbucks redemption officially started today but most stores will allow redemption the day before the first official day and so I went last night to redeem mine before all the clearance racks were picked over. With my Gymbucks, I was able to get eighteen pieces of clothing for $82.53 That's an average of $4.59 per piece of clothing. See why I have to laugh when people say they can't afford Gymboree but yet they go and pay twice that amount for something elsewhere that is not as high-quality? Seriously....

So this morning I was rearranging all the Gymbo loot I got last night in Reiss' and Milla's closets and they were helping or rather, playing with all the clothes (a.k.a. unhanging them) on the lower rack faster than I could hang clothes on the top rack. In the far depths of the closet was a forgotten bin of stuffed animals.

I do not like
stuffed animals. I repeat, I do not like stuffed animals.

I do not care for stuffed animals because they are little dust factories and safe harbors for all kinds of creepy crawly things and just not my favorite type of toy. Oh, and if they came from Goodwill, eeeuuuwww.....just EEEUUUWWW. If someone gives a Goodwill purchased stuffed critter to my children, those immediately get tossed in the Goodwill pile.

I am not a germaphobe but I know the kinds of things I have given to Goodwill - yes, I have occasionally been guilty of taking off a shirt and throwing it into the Goodwill pile without laundering it - and I also know there are people out there who are not nearly as clean in their daily habits as I am. So if I'll give an unlaundered shirt to Goodwill, what are people of less conscious level than I giving? I can't help but think that maybe someone's dog has peed on some of the stuffed animals before they made it to Goodwill or even more realistically thinking, by how many dirty mouths that stuffed lion or tiger or bear has been bitten or chewed. Oh my!

With the Gymboree loot stored and arranged by size (I have some clothes for Milla all the way up to size 6!), we pulled out the stuffed animals for a romp in the playroom.

Here is Reiss chewing on Uniqua's tag. See what I mean about little mouths chewing on stuffed animals? My own children do it so I know others must do it too.

Milla carefully making her selection.

You should probably be made aware that my camera never seems to snap the photo when I want it to, so anytime you see a photo on here that's actually pretty cool, it's almost always by mistake. I was probably trying to catch a different memorable moment that ended up being another memorable moment by the time the camera decided to act. The photo above is one such instance. I was trying to take a picture of Reiss running from the scene after he had just dumped everything but instead, got a pretty swell photo of Milla looking like she was ever-so-delicately touching the bear's tummy. We will let her believe we don't know the truth about how she gets a little excited and not-so-delicate.

Stuffed critters everywhere! This photo doesn't do justice to the enormity of the mess, as there were many more critters all around my feet from where I was acting as photographer.

Not really related to the stuffed critter play session but seriously, could I not post this photo? She's looking about as devious as a toddler can get. This photo reminds of those "Pi$$ on" window cling things you sometimes see on cars or trucks that have the little character who looks like the comic character, Calvin, doing something that's not-so-nice.

The stuffed critter play session was part of this morning's festivities. Later on, in the early afternoon, we went to a friend's house and played with the kids there and swam in our friend's pool. Our friend has been doing this regularly schedule playdate and swimming for a few weeks now. We love it and they are so generous to share their home with us every week.

Reiss and Milla love the pool, which surprises me a little. Reiss takes awhile to warm up to anything new, no matter how fun it is or how much he likes it later. He loved the pool from almost the why won't he play in the sprinkler at home? He loves the pool and he loves to stand in the shower but can't stand when I put the kids' sprinkler on the hose. He's a tough nut to crack, for sure.

After swimming, we came home and had a snack and Milla was so tired she could barely walk. I hate to admit it but I sometimes think it's kinda funny when she gets that tired because she's like a little walking zombie. Don't get me wrong, I would never let her fatigue-induced stupor allow her to fall down or run into a wall....I'm just sayin' it
is funny. Bellies satiated with tortilla chips and drinks, off to nap we went.

And that brings us to now. Reiss is snoring like an old man on the couch. Milla is asleep on my lap. She was in the chair but sat up wide awake so I let her nurse a little while and she is back to sleep again. I may have to move her, as now my leg is asleep too.

Wednesday, July 15, 2009

A Study: The Stress of Autism

After posting early yesterday details of what was a typical stressful outing for us, and then late last night clarifying my stance on how things are different for parents of children with autism than they are for parents of typical children, I found this study interesting:

Thank you to Ellen Notbohm, author of Ten Things Every Child With Autism Wishes You Knew, who posted the article to her Facebook page.

Tuesday, July 14, 2009

I Would Like To Clarify....

a few things, actually.

Why am I on here so darn late? For the second night in a row, I cannot sleep so what better way to pass my wide-awake time than to clear up some things on this blog? Lately, my thoughts come in blurbs at a mile a minute and in order to keep up, I just type and type away and unfortunately, that sometimes results in not really producing an accurate translation of the thoughts in my head to words on the screen. In other words, I may have said some things recently that came out wrong or possibly sounded offensive.

With that said, I apologize for anything that may have come out as being offensive or other misconceptions I may have lead anyone who is reading to believe. I will also add that occasionally (if you ask my husband, he would probably tell you it's more than occasionally) I exaggerate things. Yes, it's true and that brings us to the first clarification I would like to make.

Awhile back, Reiss' preschool class took a school field trip to the zoo. James, Reiss, Milla, and I went along with them but in our own vehicle. In the blog post where I detailed the trip, I mentioned HERE about Reiss running away from us and getting "about a hundred yards into his sprint." To be more accurate, it was about one-hundred feet or so - not the length of a football field, as I would have people reading that particular post believe. However, what did make that incident so scary was that we were in a very heavily foliaged (is that even a word?) area and Reiss ran around a curve where we could not see him.

Next....I mentioned HERE just last week something about Reiss' particular autism making it so he does not understand the concept of money. This has been on my mind since I posted it but I have not been sure how to correct what I am trying to say. It's not that Reiss doesn't understand the concept of money because he has the form of autism spectrum disorder that he has, it's that he does not understand the concept of money and I think it is due to him having autism. Generally, four-year-olds have some concept of money and that it gets them what they want. Reiss knows that when you go to a store, you pay for things and by paying for them, you hand the cashier either money or a credit card but he also thinks this is optional as is often stated by him voicing, "Don't wanna pay for the........" I'm still not sure I am saying what I mean but suffice it to say that having been around enough typical four-year-olds to see how they react with money, I know that Reiss reacts differently and his relationship with money is different than that of a typical four-year-old.

And finally, in reply to my post I made just earlier this evening, Viv said:
"It isn't always easy for us *normal* moms either. My three year old is also a runner. As in he is GONE if there is even a single moment that he isn't restrained in any public place, or for that matter even our front yard. My whole life seems to revolve around keeping my sanity and *trying* to keep my household running......."

Viv has been reading and commenting on my posts long enough for me to feel confident in stating that I don't think she meant for this to sting even though it did just a little. And I don't mean it stung because she said anything hurtful. It stung for me to realize that perhaps my posts are conveying an attitude that comes off as me thinking parents of typical children have it easy. If that is the case, I do apologize and not only to Viv, but to anyone else who may be thinking the same. It is certainly not my intent to offend anyone nor try to make anyone think I feel others have it way easier than I do.


Yes, there is a "but." I would like to point out a major difference in my child running away and a typical child running away from his or her parent. Whereas a typical child can most likely communicate what his name is and/or his parents' names to someone who has found him after running from a parent, my son cannot. Or to be more specific, Reiss can tell you his name but probably won't, much less tell you what mine or my husband's names are. When we practice this type of conversation at home, we only get the correct answer out of him maybe fifty percent of the time if we are lucky. That's with us, his parents, so it's very likely he won't tell someone who is a stranger. Furthermore, he has pronomial confusion and echolalia, so even if he chooses to reply to a stranger's questions, it would most likely be in the form of repeating the question asked back to the person doing the asking or by him answering in a way that they would not understand. For instance, if you ask Reiss "Where is your mommy?" His answer would either be something along the lines of "Where is your mommy?" or "Your mommy is over there." He means "My mommy is over there." but that's not how he would say it.

So, while I do understand that every parent - even parents of typical children - has their own struggles of some kind or another, I would like to point out that parents of children with autism seem to have a lot of the same problems but compounded in ways that can be difficult to understand or even fathom if one is not familiar with children on the autism spectrum. That's not to say "My life is rougher than yours." or "Parents of typical children have it easy." It just means parents of children with autism often experience issues that parents with typical children will fortunately never have to deal with handling.

I'll Have a Grande Cappuccino and a Large Order of Simplicity, Please!

Today I am craving simplicity in the worst way and just a little bit of normalcy. I miss the days when I could just walk out the door without having to worry about taking every necessary precaution and planning every detail of every errand in order to make sure things went smoothly and I came home with the same number of children I took with me.

This autism thing is wearing on me the last few days. It seems to be a cyclical condition in which I have a few really great days and then a few bad or really bad days. Today has not been bad, it has just been a reminder that I no longer lead a carefree lifestyle like so many parents of typical children. If I sound bitter or envious, I'm a big enough person to admit that some days I am. However, I am working through it and am learning to accept that my family does not have the luxury of spontaneity or the same options available to us that many families do. I suppose it's a pretty good thing that I accomplished a lot and travelled more than most before having children.

What would most likely be a fairly easy outing for most parents was nerve-wracking for me today. I had a list of places to go and I knew it would not be completed before coming home but wanted to do as much as possible. Although we left around what is typically lunchtime for us, I was keeping a positive frame of mind knowing that lunch in the car was not totally unreasonable now that Milla is of an age where she can feed herself and Reiss usually does well at keeping the messes to a minimum. And after all, I didn't get leather seats and an expensive stain treatment for nothing.

We stopped and I got the two monkeys an order of fries each and a drink apiece (I love the value menu!) and some chili for myself. Before anyone thinks I'm starving my children, let me explain why they only got fries and drinks. Chicken nuggets are out of the question - they contain gluten. Hamburgers (plain and bunless) many times go uneaten without a ton of poking and prodding and sometimes all-out begging. Not exactly what I wanted to deal with in the car. Going inside to eat remains in that uncharted territory for me as far as doing things without my husband along to assist. Yes, I know, two children should not be a challenge but that's also very easy for people to say when they don't have a child who runs at every opportunity. Getting off track, as usual, anyone reading is probably still wondering why they only got fries and drinks. Simple! They don't eat much. What they got was plenty for them and I prefer to keep their nutritional needs in check on a daily basis rather than worry about it from a meal-by-meal standpoint. Translation? They got protein with breakfast and they'll get it again at dinner, along with a ton of veggies.

Back-tracking here a bit about Reiss and him running away from me.....Don't even get me started by saying, "Well, get a leash!" I have nothing against child restraints when they work but every one I've seen has the same type of buckle as the one we have and Reiss knows how to get out of that one.

Don't even get me started on the "Teach him about danger and not to run...." Most children with autism don't even get the concept of danger. Police and fire personnel in many cities are now being given classes and information regarding how to handle people with autism spectrum disorders so as to avoid situations like the Hawthorne incident and others similar to it that occasionally sprinkle the news and - even if for a short period of time - raise autism awareness in communities. Don't believe me? Look HERE.

Okay, so enough of me trying to defend myself and my failed attempts to teach Reiss about safety and not running from me in public places. Here is how our day unfurled.....

I checked the diaper bag to be sure we had plenty of Pull-Ups in there since Reiss is not potty-trained and Milla is starting to potty-train. Oh, the joys of potty-training two children at one time is just too much excitement, especially during those times when one is peeing on the floor and the other is unrolling an entire toilet paper roll. Most importantly though, I placed our new go-everywhere-with-us Diastat injector case into the bag. When Reiss had his seizure, we were lucky he was not placed on regular meds to be taken daily, but rather, given a prescription for Diastat to be injected only if another seizure should occur. Good: No daily meds. Bad: Remembering to have the Diastat with us at all times.

As I mentioned before, we left right around lunch time so the first thing on our agenda was food and getting some of it from a drive-thru. We did that and ate in the car and moved on.

Next, we went to the local YMCA to talk to someone about renewing our membership - but more specifically, about how things would be handled with Reiss and his autism. I wanted to be assured in the feeling of security that the care he would receive is appropriate and experienced. I needed to know if it is a problem that he's not potty-trained and would they know how to handle a seizure and blah, blah, blah. See what I mean about craving some normalcy? I wish I could just go in just like nearly everyone else and fill out a few forms and be done with it and start working out but it doesn't work that way for us anymore.

On the bright side, after talking to the woman I spoke with about our concerns, I feel rejoining the Y is a good move for our family and I hope to do it this week. We didn't do it today because Milla was getting all cranky-pants on me with it being early afternoon and near naptime and we might as well take James with us to do it all at the same time and save ourselves some time later of having to have his ID made on a separate date.

Next up was the health food store. We definitely do our part in shopping with local businesses and helping them stay in business. The two health food stores close to us receive more charitable contributions revenues from us than any one family should ever dole out. We didn't even need anything from the one we were going to today except that I noticed when I went to the other health food store yesterday, there was a sign on the freezer case saying the manufacturer of the Bell & Evans chicken nuggets we love so much was back-ordered on them. I wanted to get some more before both stores were out of them for God only knows how long.

Speaking of Bell & Evans, if you haven't tried this product and you don't mind paying the equivalent amount of money as say, a filet-mignon from the fresh meat case at the grocery store, I highly recommend their chicken nuggets. That said, we only eat them when I a)forget to thaw something for dinner or b)am feeling lazy and don't want to cook what I did thaw for dinner or c)want something that tastes like it came from out but don't want to pay to go out. They're expensive but convenience food doesn't come cheap when one has so many dietary restrictions. On a side note, if you come across the Bell & Evans chicken patties, all I can say is, "Back away from the freezer case." Honestly, I don't know how a company can make one product such a rockstar and another so gross I wouldn't feed it to the dog who roams the neighborhood. Oh wait, yes I would. That's exactly what I did when I served the patties for lunch one day and no one in our family took more than two bites.

Distracted again. Oh well, you guys are used to it by now. From the Y, and for most of the way to the health food store, Reiss and I had the "You run, we leave" conversation. I thought he had absorbed it and maybe this one time I wouldn't be "that parent" subject to the whispers and stares we so often get but alas, about ten minutes into my overstepping the bounds of just going in and grabbing what we needed and into the browsing segment of our visit, Reiss ran into another aisle. We already had the chicken and some organic popcorn (I've been wanting to try a recipe that calls for Chinese five-spice blend and some other things mixed and poured over popcorn), so I had to act on the you-run-we-leave rule.

We got our purchases rang and paid for and I comtemplated our next stop to Bed Bath & Beyond to get a salad spinner. However, Milla was way past due for getting home so that is where we headed. Back home. Back to the security of our haven of our own version of normalcy.

Saturday, July 11, 2009

Friday Night Fun Fair and PHOTOS!!!

Last night we went to a fun fair/rummage sale combo that was held at a church near our house. The tickets were CHEAP and the people were sparse. Reiss and Milla pretty much had the run of the place as far as the fun fair attractions were concerned - always a good thing when your child tends to be apprehensive around crowds of people.

I didn't intend to buy anything from the rummage sale area but they did have a toy section which, I might add, was very obviously strategically placed where one had to walk through it to get to the fun fair attractions for the kids. That's how they get you...You think you're not going to buy anything and they're one step ahead of you. It was all good though, because I found a Little People barnyard with Little People animals and some miscellaneous animals that didn't really go with it. We got that for $5 and another truck for Reiss for $0.50

One good thing about Reiss' particular autism - at least for now - is that Reiss doesn't understand the concept of money or "things being equal" yet so he doesn't know that Milla got something big and he got something small. And before anyone accuses me of picking favorites or cheating Reiss out of something, most often Reiss gets something and Milla gets nothing. I figure I can ride that one for a little while longer until she understands money and getting things and know, all the things in which little children are the ultimate experts.

Anyway, about my Milla's Little People barnyard......I'm all excited about this find for two reasons. First, I love anything Little People! They are such awesome toys to use as learning tools. And second, Milla's speech therapist is forever bringing some type of animal-related toy to assist in Milla's therapy sessions and I really believe Milla gets the most enjoyment out of the animal toys. Her therapist brings a barnyard similar to the one we got last night so now we have one to play with any time we want and not just a few minutes during therapy each week.

Enough of my meaningless rambling and on to the main course - the PHOTOS!!!

Reiss coming through the tunnel on the obstacle course.

Reiss sqeezing through the pillars....shouldn't be too difficult - he's a twig.

Forget the games! It's all about getting to choose a prize....

Milla getting ready to throw a bean bag in the bean bag toss. (Just pretend you don't see all that extra fat flesh on my arms!)

Not sure what Reiss is doing to Milla's bum-bum here but she doesn't seem to mind. This is the two of them in the jousting pit inflatable. They're obviously too young to joust so the guy just let them run around in a million circles in there.

Reiss with a jousting mask on his head.

I really think we may have discovered a future career for him....

I had to take a photo of this because it's not something I often see. This isn't just Milla sleeping - it's Milla asleep where she fell asleep. On. Her. Own. That's right! No help at all or any soothing methods necessary....she just went over to the beanbag, plopped down, and was out like a light.

Thursday, July 9, 2009

A Little Thursday Afternoon Rant

If anyone is actually reading this, I am probably going to catch some flack for saying what I am about to say but if you are a regular here, you know I don't care. And if you're not a regular, consider yourself warned. If you're dumb enough not to see common sense when it's right in front of you, the joke's on you.

It has been nearly a week since the passing of the Fourth of July and with every coming day that I sit here on the computer browsing my regular haunts, I am seeing more and more photos posted on Facebook, message boards, and blogs of way-too-young children sporting sparklers or lighting some other fireworks-type of pyrotechnic. What amazes me is how the parents of these children have posted these photos in a way to give an unspoken statement of the typical proud parent mantra of "Look what Little Johnny can do!"

Seriously, folks, what on God's earth are you thinking!

Now generally, I try not to judge other people and their parenting skills because, as a parent of a child with autism, my experience is that my husband and I are subjected to outsiders' stares and whispering on a much grander scale than the average parent. However, when a child's safety is at stake, hand me a gavel because someone needs to put the smack down. When I see photos of your three or four-year-old holding a lit sparkler, it does not conjure up thoughts of "How precious!" in my head. It makes me think you're a moron who has placed your child's safety on the back burner in exchange for a little bit of holiday fun and photos.

Come on, people! Educate yourselves! If you really think sparklers are harmless fun and safe for young children to handle, I encourage you to click HERE for the Center for Disease Control's statistical facts on fireworks. If you choose not to click, I'll just give you a teaser and clue you in on the fact that those "harmless" firecrackers and sparklers are the most injury-associated type of firework on the market.

By the way, considering my stance on vaccines, you'll probably never see me touting the CDC again!

Tuesday, July 7, 2009

The Different Hats They Wear

"Bush Babies" - Reiss and Milla with canvas "bush" hats. Reiss and Daddy wear these outside so their heads don't sunburn through their hair when doing yardwork.

Milla taking a break from the pool.

Anyone notice a trend here?

Monday, July 6, 2009

What is a Date?

No, not a Medjool date or even a Halawi or Thoory date. What do you and your spouse or significant other do when you get that ever-so-rare (for us, anyway) treat of a few hours of childless retreat?

Don't get me wrong. I love my children more than words can express but even the best parents need a break now and then. My husband and I do not get anywhere near the number of breaks our friends who are parents get from their own children. Occasionally, I will browse a local mommy message board and read about people who even go on vacation without their children - definitely not for me but I'm also not criticizing.

(Now why would I ever want to get away from someone who looks so sweet???)

Anyway, James and I had such a moment of childless bliss yesterday afternoon when my dad and step-mom came and watched Reiss and Milla. James and I get a break so seldomly that we usually don't even know what to do with ourselves when we do get one.

Yesterday's date was a late afternoon lunch at Ruby Tuesday. We both got hamburgers and I was pleasantly surprised when our food showed up to see that the buns were wheat buns (no, we do not ordinarily stick to GFCF when it's just James and I going out to eat) without us making any special requests for something other than white. James had a regular burger and mine was turkey with bacon and avocado. It was so good and so huge and I certainly should not have eaten the whole thing and the fries with it but I did AND also had a drink called a Ruby Relaxer.

I ordered and received the drink, our server informed me that the drink had four ounces of alcohol in it. I have serious doubts because I drink so little when I do drink that if I had consumed four ounces of alcohol yesterday I would not only know it when drinking it, but my legs would have known it as well when I got up to walk. It was an excellent drink and I don't drink to get drunk so I didn't mind that it didn't have all the alcohol in it that Andy proclaimed it to have. All was well and it served it's purpose: I was a little bit more relaxed after the last sip.

Following lunch we went to go get some Pull-Ups for little Miss Big Girl who is now potty-training right along with her big brother. I hate to think that she may be fully potty-trained before her older brother but if that's the case, that's life. Less diapers for me to change. We got them at Babies R Us because I had two stackable coupons - one for $2.50 off and one for $5.00 off. I never buy diapers at Babies R Us because they're too expensive but darn CVS and Walgreens have not had any good diaper sales lately. I gotta go wherever the deal is and yesterday, that happened to be Babies R Us.

After BRU, we went and bought another potty-chair and some white underwear for Reiss and some boxer briefs for James and candy bars. James got a Butterfinger and I had a Twix. Then we headed home.

To sum it up, our Sunday afternoon date consisted of having hamburgers and fries, buying diapers, underwear, a potty-chair, and candy bars. Do we know how to party or what? We are walkin' on the wild side now!

Sunday, July 5, 2009

Autism Strategic Action Plan takes shape - PARENTS WANTED

Do you want to make a difference in Northern Ireland regarding autism? Do you want to have your voice actually heard as a parent/carer? Here is your opportunity. No, you didnt get a leaflet outlining the information below, through your door, (in fact the first meeting to discuss this strategy publicly was only publicised 7 days prior to it actually happening.)

But, you do have further opportunities in the next month to attend meetings discussing the ASD Strategic Action Plan. Parents are being invited to attend these meetings, so that they can form the reference groups. Here is your chance to make a difference for your child. Parents are needed from every board area.

Please make an effort to attend the remaining meetings (cited below).

If you have complaints about the way things operate regarding autism in Northern Ireland, here is a chance to make a difference. It's a start and they state they 'really' want to hear from parents. This strategy needs new blood, get in now to prevent others speaking for you.

The next meeting is tomorrow (6 July) in Portadown (Seagoe Hotel) at 7.00pm.

I think that what the Autism Strategy organisers are looking for is to find parents who are knowledgeable, politically astute and who have the time to commit to this very important venture. They won't find you unless you present yourself. You will be responsible for shaping the autism strategy and forming/creating positive alliances and improvements in all areas of our children's lives.

Don't let the same old voices speak for you. No doubt certain organisations are going to 'pack' these meetings and cuddle up to the Chair, Dr Stephen Bergin. He is a very affable man, and very easy to talk to, but perhaps has something to learn about the 'politics' of autism in Northern Ireland. I am hoping that with his extensive experience, he will see through what is and has been been happening in Northern Ireland in terms of politics. Don't leave this opportunity to others because 'others' will certainly fill the vacant positions.

You have just as much opportunity to get involved in this as anyone else. Imagine setting the agenda for what happens in the future for your kids and mine! Slowly ever slowly things are changing in Northern Ireland and the government has realised that they must involve parent/carers/users. It's the law! Contact him via the phone number at the bottom of this page.

29 June 2009 - Health Minister launches new autism strategic action plan

An action plan that will deliver significant improvements in services for people of all ages affected by autism, their families and carers has been launched.
The Autism Spectrum Disorder (ASD) Strategic Action Plan (2008/9 – 2010/11) follows an independent review of ASD services which was chaired by Lord Maginnis.
Launching the Action Plan, Michael McGimpsey said: “From the outset I have been committed to improving care for those affected by autism. The need has been clear. This Action Plan will drive up improvements in the service for the benefit of all those affected by autism, their families and carers.

“I recognise that to do this partnership working will be vital. All sectors must work together and no one organisation can work in isolation. A joined up approach will ensure that the needs of children, young people and adults affected by ASD are addressed, through the delivery of high quality, timely and effective services.”
The Minister continued: “The Action Plan follows on from the excellent work of the Independent Review, chaired by Lord Maginnis of Drumglass, and I want to thank him and his team for the very valuable contribution they have made.”

A major action within the ASD Strategic Action Plan (2008/9 – 2010/11) was the establishment of a Regional ASD Network Group. The aim of this multidisciplinary, multiagency Regional Autism Spectrum Disorder (ASD) Network Group is to provide a regional perspective to the development of autism services and to oversee the implementation of the Action Plan.

Dr Stephen Bergin, Chair of the Regional ASD Network Group, welcomed the Minister’s support and encouraged input from parents and carers. He said: "Communication with service users, parents, carers and the voluntary sector is vitally important to the success of this action plan. To facilitate this, the Regional ASD Network is holding a series of open meetings across Northern Ireland where additional information regarding the Network will be shared. I look forward to working closely with services users, parents and all voluntary and community sector groups.”

Open meetings have already commenced and will continue to take place across Northern Ireland in June and July as follows:

June 29 - Omagh (Silverbirch Hotel).
July 6 - Portadown (Seagoe Hotel).
July 29 - Ballymena (George Sloan Adult Centre).
All events are scheduled to commence at 7pm.
Notes to Editors:
1. The ASD Strategic Action Plan and the Consultation Response Document can be found on the DHSSPS website.
2. The Regional ASD Network Group is chaired by Dr Stephen Bergin, Consultant in Public Health Medicine, Public Health Agency. Dr Bergin was a member of the Independent Review of Autism Services.
3. The Regional ASD Network Group will be supported by a Regional ASD Reference Group, chaired by Lord Maginnis, to provide valuable expertise and advice from parents, carers, and individuals affected by ASD as well as the voluntary and community sector.
4. Public consultation on the ASD Strategic Action Plan ran from September to December 2008. Over 450 consultation responses were received.
5. The ASD Action Plan is organised around five key themes:
service redesign to improve ASD care
performance improvement
training and raising awareness
communication and information
and effective engagement and partnership working.
6. Press enquiries to DHSSPS press office on 028 90522841. Out of office hours please contact the duty press officer via pager number 07699 715 440 and your call will be returned.

Saturday, July 4, 2009

Cry Me A River!

Yep! That's what I'm gonna do. There's already a river flowing in our yard from all the rain we have had today so I might as well add to it with my tears.

Disclaimer: This is going to be a whiney, self-pity party kind of post and it's MY bloggy so I'll cry if I want to, cry if I want to......Consider yourself warned. If you're not up for what is to come, I suggest you leave now.

Today is the Fourth of July. It is supposed to be sunny outside with the air full of the aroma of backyard barbecues. But is it? NO! It's been gloomy all day and raining for the last seven hours straight.

Although it was cloudy outside, my day started out pretty decently with our traditional Saturday morning routine of James and Reiss making pancakes for Pancake Saturday. We are now using this recipe and it comes closest to the texture of regular (as opposed to gluten-free, casein-free) pancakes as any other GFCF pancake recipe I have found. Word of warning to anyone who tries it: the pancakes soak up the maple syrup and easily become very saturated. I've noticed we use a lot more syrup with these pancakes than we have in the past, so if you're trying to watch sugars (including natural ones), this may not be the recipe for you.

After breakfast, I was able to get more cleaning done than typical Saturday mornings. James and Reiss always go to the bank on Saturday mornings and regardless of the fact that it is closed today, they went today as well. Hey, the less straying Reiss has from his routine, the better. They were gone for a little while and then soon came home. Then a friend called and that's when things started to go downhill.

The kids came in where I was talking on the phone and Reiss grabbed the phone headset (we have a cordless headset to wear for hands-free operation) and then Milla started screaming about who-knows-what and then James came and got them and took them out of the room and started slamming doors, to which I got off the phone and asked him about, and then we had a little tiff, and blah, blah, blah.

We all got ready to leave and we didn't get to eat our normal Saturday Chinese lunch because - surprisingly - the place we go to every week was closed for the Fourth of July. We went and got lunch from somewhere else and, as usual and I hate to admit, Milla could not sit in the highchair for more than five or ten minutes without screaming. Another thing that grates on me.....

Now, if you ask my dad or my step-mom or my mother-in-law or probably anyone over the age of fifty or heck, for all I know, anyone who has had a child who didn't mind sitting in a highchair, I am sure they will all say to just make the child sit in the chair and they will get used to it. Well, that's all fine and good when we are at home but the problem we have here is that a) we were in public and I refuse to be "that" family who everyone stares at because the child is left to scream endlessly and b) Milla is a puker. Yes, I was "blessed" with having a child who, when she reaches a certain point in her mood of upset, will begin to blow chunks on everything and everyone around her because she is not only a vomiter, but a projectile vomiter. And seriously, if you're out to eat, is that really something you want to watch from a child at a neighboring table after being subjected to five minutes of crying because the parents were forcing her to "get used to" the highchair?

After lunch, we left and went to a party of some friends on a neighboring street from our home. We knew there would be food there but we ate lunch out anyway, because the kids were starving and frankly, so were James and I.

The party was meant to be a pool/birthday/Fourth of July party. Again, it's been raining here all day, so no swimming. The kids would not stay with the other kids and play. Milla's very young so I don't expect it a whole lot from her. Reiss, on the other hand, is always so far up in mine or my husband's rears, I sometimes wonder if he even understands other children do exist.

Now before anyone gets their panties in a bunch, yes, I know that anti-social behavior is a symptom of autism and I should know this and be used to it and blah, blah, blah....easy for parents to say when they don't live with a child with autism and don't have to deal with the good, the bad, and the ugly of it every day. These habits and symptoms are relentless. Typical children are much more easily encouraged into cooperation. However, one cannot simply turn off autism. I wish I could but it doesn't work like that.

I knew, knew, knew I should have gotten someone to watch the kids so that James and I could go and have a good time and be social but did I listen to that inner voice? No. We spent an hour with Milla hanging on me and then going to one of the nieces (who Milla is familiar with) and being semi-comforted and Reiss hanging on James the whole time.

I just sometimes feel like we have no social life. I didn't get someone to watch the kids today because I was counting on sun, fun, and swimming. Had the freaking sun come out, there would have been our friends' nieces swimming and helping Reiss and Milla and James and I could have relaxed. But noooooo, Indiana weather can never cooperate with the holidays. Someone correct me if I'm wrong, but it seems that it also rained on the last holiday weekend (Memorial Day) as well.

Even our friends who were having the party have two sons with autism and their children aren't all "up in them" like Reiss is with us all the time. One of their sons is totally anti-social but rather than need to be attached to a parent all the time, he prefers to stay in his room much of the time. The other is somewhat anti-social but will at least sit in social settings, even if he doesn't interact with others.

It just gets so exhausting sometimes when you have a child who refuses to self-entertain. When Reiss is left to his own devices with me during the day if I am say, loading the dishwasher or whatever, his version of self-entertaining entails lying on top of Milla and squashing her or somehow hurting her in other ways. Or he will go tear something apart or be destructive. Gaahhh!!! Sometimes I just look at him and yearn for that little boy who used to push the laundry basket around and "help" me do the laundry, even when "helping" meant cleaning up two loads of clean laundry he had scattered all over the floor. At least then it was sweet and not mean-spirited. Now he refuses to help with the laundry and prefers to entertain himself by hurting someone or something.

Okay, I'm done whining. I have saved many of the details of this latest bout of depression because it's just too depressing to put words to the screen, not to mention, the fear of having you all think I'm just plain nuts. Thankfully, I do know there are a few of you out there reading who have children with autism and know exactly the kind of day I'm having (BTW, thank you for all your encouraging comments and email messages!!!). That's not to say I don't appreciate those people who have typical children who come here and read my ramblings, it's just that I know it's very difficult to walk in another's shoes when you've never been there yourself.

Blah, blah, blobbity, blah.....Here's to hoping tomorrow really is sunny - literally and figuratively.

Friday, July 3, 2009

Mother, can you spare a dime, or rather £450.00?

Autism Ulster/Autism NI together with an events company are organising an autism conference for July 2010 in Belfast (after a full month online, the link to the conference is today, inaccessible (under construction) - maybe AutismNI read this blog and are rearranging their fee schedule to make the conference accessible to parent/carers?)

UPDATE: 26 AUGUST 2009 - the site is back up and running and as expected, the fees have been reduced by at least half with a special rate for parents.

UPDATE: 2010 - The Conference is cancelled altogether - no surprises there then.

If you have £450.00 to spare, you can attend this two day event. If you book early or if you are selected to present a plenary session you will save £100.00. I do not understand why AutismNI/AutismUlster with their 24 staff had to hire an events company to organise this conference as surely that many staff should be able to prepare a conference with ease. They are after all 'autism experts'.

Extraordinary fundraising efforts from parents like these (see: will help AutismNI/AutismUlster pay the bills from the events company and more.

Yes, I know, what you are all saying - it's appalling that AutismNI/Autism Ulster takes money from parents like this. Maybe the mum insisted or forced herself on AutismNI/Autism Ulster? Maybe they just 'couldn't' say no? If we had statutory bodies who did their job, parents wouldn't be used like this.

Last weekend, PEAT (Parent Education as Autism Therapists) presented a comprehensive two day ABA conference (applied behavioural analysis) and brought some of the biggest names in the world to Belfast at a vastly reduced fee compared to the proposed AutismNI/Autism Ulster 2010 conference. (£60.00 for parents) The PEAT conference was well attended by parents and provided real help to those who want to 'intervene' their children's autism with ABA. PEAT is not well funded, is relatively new to the scene compared to AutismNI/Autism Ulster but has managed to give parents tangible and sustained advice and assistance that no one else in Northern Ireland ever has. Whether or not you agree philosophically with ABA or not, at least PEAT is doing something different and provides an avenue to parents to meet their children's individual educational needs.

PEAT's name and website links have been added recently to the AutismNI/AutismUlster site (though you do have to scroll through their links page to find it). Unlike the other 3 autism charities in Northern Ireland (NAS, Aspergers Network and Eagle Project) PEAT must have found favour with Autism NI/Autism Ulster.

I would ask the mother referred to in the weblink above how she thinks raising £2500.00 and giving it to AutismNI/AutismUlster is going to benefit her boy. I wonder if some of her fundraising might be used to permit admission for a few parents to the upcoming conference. £2500.00 will pay for five parents to attend.

'Company Store' springs to mind here. I also wonder what the membership of the charity think about the fact that most of them will not be able to attend a conference that their membership fees and annual fundraising efforts have paid for. Nice.

Really ladies and gentlemen, it is time to wake up. I know that some of the membership are not happy with this proposed conference, but I ask you who are not happy, have you voiced your concerns? Did you write a letter to the paper, to the CEO? Are you afraid to do so? Do you think it would make a difference if you did? Or did you go ahead, once more, and submit your membership fee, afraid that if you don't pay, you will be excluded or ostracised from your local support group?

I think AutismNI/Autism Ulster might mirror what happens to individuals in Northern Ireland who are members of particular political organisations, you know the ones who have their own 'clubs' and 'pubs'. People who have gone through ideological transitions over the years and who dare to speak out about their refreshed ideologies will not be welcome anymore. Is this the way it works in AutismNI/Autism Ulster? Speak out against the status quo and you are out. You lose your support group, people who you thought were your friends no longer want to be around you. It's dirty, incredibly damaging and all of it is orchestrated to keep parents in line and not to ask too much or think too much.

If you thought you and your family were isolated with autism before, try getting on your soapbox at your local AutismNI meeting and watch for the crumpled faces of your parent compatriots. Northern Ireland is like a wee village, it won't be long before the gossip evolves and you attract 'troublemaker' as your first name. This is so so wrong. I would throw down the gauntlet to any member of AutismNI/Autism Ulster or the NAS for that matter, to seriously rock the boat and see what happens. We all remember what happened to George Savage MLA at Stormont recently.

There is a war on for your and your child's mind here in Northern Ireland. Only square pegs are welcome.

Back to this young mum and her Great Wall of China idea - will the money she raises be used to provide her son with direct services or will it be scoffed to fly more MLA's off to Washington? I note in the linked article about her, that Michelle O'Neill (SF) has a few comments to make about how difficult it is here in Northern Ireland - as she was one of the selected MLA's to attend the December 2007 AutismNI/Autism Ulster junket to Washington, maybe she could tell us what her trip did for this young mum.

Maybe she would like to give this young mum back, the money it cost to fly her, wine and dine her, in Washington? What about it Michelle? Put your money where your mouth is. I distinctly remember talking to Michelle O'Neill about autism years ago and in the middle of our conversation she related to me how 'she had children'. I never did figure out what relevance that had to the issues I was bringing to her. That was pre-Washington. I presume she is clued up now?

The China trekking mum of 3 is no doubt genuine in her efforts to help others by helping the 'local' autism charity. Charity regarding our children, however, begins at home and if she likes I will gladly give her all the help and advice she needs to get her boy statemented and into a suitable program of autism intervention of her choice. I will make sure she knows that there are choices out there (and I will direct her how to get the Schoolboard to pay for it. Other parents, no doubt, will be able to tell her who to contact should she need independent legal or educational psychological advice. So much information is for free, if only parents would get together. There is no reason to re-invent the wheel, our pooled knowledge and experience as parents is unmatched. Yet, very few ask us for help.

Not many parents will be coming together at the proposed AutismNI/Autism Ulster conference, not unless they all take out a loan to pay for it and find a free creche to take care of their children for two days. The proposed conference is clearly not for parents, but for the well heeled members of the autism industry.

If I was able to raise £2500.00 I would start my own charity/organisation for my own son and buy him the sensory integration therapy he needs, (non-existent in Northern Ireland) or a Fast Forward Program, something his school 'can't' afford.

The ethics surrounding members of AutismNI/AutismUlster or any autism charity carrying out such fundraising is appallingly questionable. This mum's young child needs her and he needs her now. I suggest that the staff and CEO of AutismNI/Autism Ulster start training for the Great Wall adventure run themselves and leave parents alone. Parents have much to do, particularly parents like this mum. I digress.

Back to the conference...on it's web site linked above, AutismNI/Autism Ulster make a number of references to how beneficial the 2010 conference would be to parents and carers. I suggest any parent interested in attending, to ask your mortgage company or the housing executive to stall your payments for one month so you can attend this conference. Failing that, you could of course save 9 weeks of your Carer's Allowance or a month of your child's DLA in order to attend or apply for a carer's grant - that is if you really want to - the line-up is not exactly earth shattering.

AutismNI/AutismUlster, have been instrumental in continuing to promote the TEACCH Program (Treatment and Education of Autistic and related Communication-handicapped Children) in Northern Ireland. To that end, this conference will feature Gary Mesibov of TEACCH et al. What we as parents have to learn from Gary Mesibov is beyond me. The acroynym 'teacch' sounds like the word teach, but this program has very little to do with teaching/education/learning. The idea of paying £450.00 to listen to Mesibov drone on once again about the marvels of robotising our children is anaethema to me, and I am curious as to whether parents involved with AutismNI/Autism Ulster have ever been given the opportunity or have been heard in their critique of TEACCH. Surely some parents in Northern Ireland have read the comments from Patricia Howlin and others about the lack of efficacy of TEACCH.

If parents have voiced their concerns over TEACCH, AutismNI/Autism Ulster have not been listening. TEACCH is of course, lucrative and for Autism NI/Autism Ulster, it has been a good earner via the charity's dedicated company 'ACT'. Teachers like it because it fulfills their generally self fulfilling prophesies about our children ('these' kids can't learn, but they love routine, why bother educating them; they haven't learned the way 'we' teach them, it's their fault, we tried, they are stupid, lets control the damage via TEACCH; let's book a refresher course costing thousands of pounds via AutismNI/Autism Ulster so no one can claim we aren't qualified in how to damage children - most of all never EVER let the parents think their child is capable of learning otherwise the flood gates will open!)

Compare this to some of the more informed and pro-active parents in Northern Ireland who hire autism consultants from abroad, recruit their own dedicated staff, train them, and run full time education programs for their children in their home every day generating copious data collection, weekly reviews, video footage analysis and some of whom attend 3rd level and post graduate studies in ABA/VB/Autism studies) . The 'why bother' mindset of the TEACCH promoters guarantees children who will grow up to live dependent or in a group home. (statistics of independent/employed adults in Northern Ireland who have a diagnosis of autism is appalling in the extreme.)

No one knows where a child will go unless all possibilities are pursued. In Northern Ireland minds have been made up about our children and one thing is guaranteed, if you don't 'do the work' with your child, s/he will suffer for it just like any other child.

The 'system' in Northern Ireland has given up on our children by promoting TEACCH. It's cheap and it expects absolutely nothing. Most of you who have children on the spectrum will know how incredibly bright your child is but teachers dont have the time, money or belief to pursue excellence for our children. Parents have the love and the belief but so often don't have the time or the money. 'Excellence' in terms of provision for our children is the remit of the very few. It costs. It's all about money. School boards know this which is why special schools and TEACCH have flourished here in Northern Ireland. If parents knew the truth about this devastating program, we wouldn't have TEACCH anywhere near us. Try and talk to the head of your local special school about the efficacy or lack of, regarding TEACCH. Guaranteed you won't get very far because even they are uninformed, stuck in a rut and don't bother to do the research to discover that there are other ways to teach.

AutismNI/AutismUlster blather on about being around for 20 years, but nothing new evolves with them, same old same old. I do hope that at least one attendee at this proposed conference will stand up for our children and ask Mr Mesibov and the organisers what exactly TEACCH has done for the children here. No positive outcomes have ever been peer reviewed by the TEACCH organisation and their philosophy has not changed one iota in decades. (that autism is a 'culture', that individuals with autism 'like', 'thrive', 'need' routine, etc bloody etc. The TEACCH program was developed to keep little 'handicapped' children quiet. Please note that the word handicapped still remains in the acronym of TEACCH. In fact the english equivalent of the TEACCH program was until very recently called the 'society for the autistically handicapped'. What are the belief systems of those who subscribe to such language?

A simple google query of 'new autism research' will provide over 1.9 million links, none of which include using the TEACCH method. TEACCH is about damage control, keeping our children functionally autistic, ensuring a new generation of care and group home employees. I recently asked the principal of a large 'severe learning disability' (ugh) school to tell me what the outcomes are for kids who make it to mainstream from the school. This individual replied '1 in 20'. I was not surprised. This school uses TEACCH, as do all of the special schools here. The attitude of this individual towards me was patronising and clearly my question was an uncomfortable one. My question was eventually answered but only after much speculation to my motives for asking it. ('oh no, another parent in denial who thinks her kid can learn' and even worse, that thinks I should be able to teach him).

I could see to some degree why parents are put off asking questions about the TEACCH program and questions in general, if what they get is psycho/social interrogation for asking the question in the first place. God forbid that any parent in Northern Ireland thinks special schools are not delivering to our children. I believe this particular teacher knew exactly what my 'motive' was. Further, the individual knew the answer to my question was not going to be pretty. Labelling children with severe learning disabilities is a catch all phrase that conveniently lets school boards and teachers off the hook from trying to help our children. When no one believes in your child, how can the child flourish? Even a plant needs basic sunlight and water to blossom. I don't think Northern Ireland believes our kids will ever blossom and deliberately keep them in the 'shade'. I also believe that 'they' (schools/society) are afraid of what they might find should our kids find the 'sun'. If 'they' dared try something new, spent a bit of money and its successful, what would be the backlash from parents whose children came before? Better to convince all parents that their kids haven't a hope, that way no one will complain. Pity some parents believe this B.S., actually a lot of parents which is why we are in such a rut here.

Which is also why AutismNI/Autism Ulster has the cheek to bring Gary Mesibov to Northern Ireland with complete impunity. If you don't know what 'neurodiverse' means or why it was coined, you have much reading to do - google it. Northern Ireland is ripe for this B.S. and I can see it coming as a further way to save money. TEACCH falls right into this construct, in that it looks at autism as a 'culture', similar to how some of the more militant deaf community view themselves.

I have promised before to go into further detail about the TEACCH method but to be honest, it is too painful for me. I have great difficulty thinking about this program without feeling sick to the pit of my stomach. I don't hear parents begging for TEACCH, I don't know of any parents going to tribunal asking for a TEACCH program. That says a lot.

90 miles to the South and 200 miles across the water, you find ABA schools, autism specific schools, but here Mr Mesibov's practices keep us in the dark ages regarding autism.

I hope that any parents who intend on attending this conference ensure they get a substantially reduced or free admission. There is no mention in the link to this conference about a reduction for parents, except that if you book early you will save a bit of money.

The conference is not for parents. AutismNI/Autism Ulster changed it's name from PAPA (parents and professionals autism) for a reason. If you want to keep parents out, you charge whacks of money to get in.

Those who will be attending this conference will be professionals looking for a couple of days away from their desks, and whose budgets can pay for it.

Researchers and bright minds in autism are not going to attend this conference, nor have they been invited. AutismNI/Autism Ulster can claim the moon is made of green cheese as easily as they can tout this conference as 'one of the most important international conferences dealing with autism in 2010'. Actually, there will be hundreds of conferences regarding autism in 2010 all over the world, with attendees who are at the top of their research field. AutismNI/Autism Ulster is not in any way known for its research capability, their website is one example of that, and anyone who has something new to share in the field of autism will be hard pressed to take the time or make the effort to come to this conference. Why would they? Researchers needs peer review, their peers won't be here. AutismNI/Autism Ulster does not have the capability to scrutinise research, much less provide its dissemination.
'Smoke and mirrors' conference would be a better title. Here is a list of some other autism conferences taking place in the coming year, all at a substantially lower price and with better line-ups than the one described above. see: .

I would suggest to parents that we present our own conference, the line-up made up only of parent experts. If we charged £450.00 a head, we could raise enough money to build a new autism specific school or send us all to Washington on an autism fact finding junket, one that would actually amount to something.