Thursday, April 30, 2009

Thankful for Three Things Thursday

It's Thursday. It's rainy and dreary and gray outside and I'm finding it difficult to be in an upbeat mood today but suck it up I will do since it is Thankful for Three Things Thursday.

Today I am thankful for:

1) Sleep. When I get it, that is. Last night didn't get off to a great start with Milla waking what seemed like every twenty minutes but eventually there was a stretch of time when I got close to three hours of unawakened sleep. Three hours!! What a delectable little treat of total physical inactivity. I'm sure for some that sounds like torture - and it is - being thankful for sleeping three hours straight. However, I've gotten used to being so incredibly sleep-deprived that anything more than an hour or two straight feels like pure dormant bliss.

I have GOT to remember to give Milla some Vitamin D liquid before bed each night.

2) Rain. Really, I don't like that it's raining out and has been for days now but if I show some appreciation for it, maybe it will move on to another part of the world for someone else to loathe. After all, I might as well be thankful for it now, with summer coming we may not see it very often. And crispy, brown, sunburned grass in front of my house doesn't make for a beautiful window view.

3) Excellent public services for special needs children in our area. Well, so far, anyway. I am very happy with the speech therapy services and the speech therapist helping Milla along with developing words other than just "Ma-ma-maaaaaaaaaaaaaaaaaaaaaaaaaa!!" Actually, it's kinda ironic that I wish Milla would say more than just "Mama" because I always wished for Reiss to call me "Mama" or "Mommy" when he was a baby and all he would ever say was "Mom." Too grown up sounding, if you ask me. He does call me "Mommy" now though and that's fine. For some reason, I have this little visual in my head that nothing is as precious as a little baby calling out "Ma - ma" for their maternal figure to come rescue them from whatever situation they may find themselves. Yes, it's silly, I know.

It would be nice and I would like to be able to once again say I am thankful for weight loss but this week has not been stellar, by any means, for me and trying to eat well. My first "infraction" was when I decided to give up the fight and lose the battle in finding a suitable sweetener to replace sugar in my coffee each morning. I have tried a product called Just Like Sugar - which, by the way, is definitely NOT just like sugar. There have also been trials of stevia, Sucanat, honey, maple syrup, Zylitol, agave syrup and my apologies if I've left anything out.

The initial goal was to find a natural sweetener that provided zero or close to zero carbs and could be considered natural. Nothing tasted right so I loosened the reigns on my dietary rules and allowed natural sugar replacements that are considered low on the glycemic index. Still a no-go. Nothing tastes as good as plain old white refined really-bad-for-me sugar. So Tuesday morning marked my reunion with a really good cup of coffee. It could be even better but I'm trying to persuade my tastebuds into believing that half the sugar I used to use still tastes better than the full amount of any of those other things. I may be back to sugar but it's been cut in half.

Tuesday also ended up being a bad day for fiber intake as well. Unfortunately, I didn't eat a whole lot of produce that day and to make up for it, as in, to (ahem) keep things moving, I ate five prunes that evening. What? Prunes aren't a bad thing? Well, no traditionally they're not bad but they are when the person eating them is trying to stick to lower carbs. If the sugar and prunes were not enough to blow it all, Milla must have felt certain I was starving because she kept bringing me pieces of Pirate's Booty. Suffice it to say I will be pleasantly surprised tomorrow morning if the scale reflects any loss at all this week. Wish me luck.

Tuesday, April 28, 2009

Most Valuable Currency: Chocolate Chips!

Not a whole lot going on here to speak of, really.

Reiss goes to preschool on Tuesdays and Thursdays. I got a shower this morning, so that was quite nice. Not something to laugh about but showers on an everyday basis are somewhat of a luxury for me. Most Tuesdays, Wednesdays (when Reiss goes to PDO), and Thursdays I get a shower. Mondays and Fridays, when Reiss is home all day, are questionable. Weekend days I always get a shower. Mondays and Fridays are difficult unless I take a shower at night because taking a shower during the day requires that I leave Reiss and Milla to their own devices and most often that results in Reiss terrorizing Milla.

Reiss has had more of a compassionate or loving or I'm not sure what to call it streak in him for about the last two weeks. He will just out of the blue come up to me or Milla and start hugging and kissing us. In the past, this has not been the case a whole lot and on the rare occasions when he did do it, he liked making a game of hugging Milla as tight as possible. Not a bad thing when it's an adult, not so great when the recipient is only an 18-month-old baby girl.

Reiss peed on the potty today at school. This is quite an accomplishment for him. He hasn't peed on the potty outside the house since the last time we tried potty-training, which was last fall, and he only did it one time. Even after running around town for about two hours today after school, Reiss reminded me when we got home to give him his reward: a few GFCF chocolate chips.

Rewards have meant virtually nothing to Reiss in the past and I was beginning to question if they would work with our current efforts to potty-train Reiss. But it's just like a new friend of mine (who is also a spectrum mom) keeps saying, "You just have to figure out his currency." And I think we have finally found it. We are very proud of Reiss. Four - or, at least, close to it - seems to be the magic age for Reiss mastering the potty.

And speaking of running around town after school, I was so impressed with Reiss's behavior at Target last Tuesday, I decided to brave Meijer with him and Milla today - without Daddy along to help.

Just like last Tuesday, Reiss received the stern warnings before getting out of the vehicle that he was to either hold my hand or keep one hand on the stroller at all times while in the store. Parking lots are non-negotiable and he has to hold my hand while we make our way from any lot to a store or business or doctor's office or whatever.

Other than a sprint of about twenty feet when we first entered Meijer and went to the customer service desk, he stayed with me the entire time. We were in there for close to an hour probably so this is another reason to be proud of him today. He is making strides towards improved behavior, which means I am also making strides towards not feeling isolated from the world and being a prisoner of our home.

Saturday, April 25, 2009

The Cure for Autism: Ketchup?!?!?

Oh Lord, please tell me she is NOT serious!

Allow me to preface this story by stating that I am certain years ago I thought there would come a time in my life when I would no longer be utterly amazed at the level of ignorance so many people in this world possess. Unfortunately, as I move closer to the big 4-0, there are still people out there who shock me with their ignorance on a daily basis.

A little background: My husband and I have been getting lunch every Saturday from the same hole-in-the-wall Asian place for around nine or ten years now. We love it. The owners are friendly, the food is good, it's cheap, and it has become our little weekly tradition.

Today I walked in the place to get our "usual" and the man who works there said he never sees my mother (he was actually talking about my mother-in-law who used to go there with us quite often) in there anymore. I said that I thought maybe she was just doing other things on Saturdays now. Then he started telling me in a sad tone how they never see all of our family in there together anymore. It makes me sad too and I explained that with Reiss having autism and being so hyper and wanting to move all over the place all the time, it's just too stressful for me.

Standing beside me, rather than behind me to wait in line, and hearing all of this, some woman pipes up, "Have you tried removing ketchup from his diet?"




Okay, I'm sure it wasn't really that long before I shooshed the voices in my head telling me to knock her up the side of her head and I regained sensibility to reply to her that yes, my son is on a very specialized diet that includes the removal of gluten, casein, preservatives, dyes........blah, blah, blah....

Seriously, I was so dumbfounded by the ignorance of her question that I'm not really sure where the conversation went after I told her that my son is on a special diet. It couldn't have been long after her question that I ended the conversation and made my exit because I couldn't wait to get home to tell my husband, "Good news! The cure for autism is simply removing ketchup from Reiss's diet!"

I did not elaborate on many of the details of the diet to this woman or the fact that is does NOT include the removal of ketchup but just in case anyone reading this is wondering, "Well, have you tried removing ketchup?" the answer is no, Reiss does still eat ketchup. We only buy organic ketchup and it has no preservatives, dyes, or flavorings in it. Although I am pretty sure this woman didn't have a clue why removing ketchup might help, even if her argument was based in the ketchup containing phenols from the red color of the tomatoes, and removing the phenols may help, it doesn't stand to reason that it would work for Reiss. He only eats ketchup very occasionally and certainly not enough to notice behavioral differences by the removal of it.

And people wonder why one of my ideas for "paying it forward" is mandating sterilization of people who exhibit levels of such ignorance in order to prevent further generations of people of their kind. Okay, not really but come on! Don't parents like myself have enough to deal with without having to hear such asinine comments and questions from people who haven't the slightest idea of what living with autism is like????

Seriously, I'm beginning to wonder why I even leave the house some days.

Thursday, April 23, 2009

Thankful for Three Things Thursday

My new washer's wash tub

The control panel

The front view

Yes, it's that time of the week again when I tell the world - you're right, I'm not fooling anyone so perhaps I should say my very small, very special following of readers - of the things for which I am most thankful right now.

1) While I am indeed very thankful for our washer, just like the new refrigerator we purchased a few days before Easter, it is not something I wanted to buy at this time. Actually, if I don't have to spend any more money on appliances in the next year or so (knock on wood!), it will be too soon.

Having said all that, I am very thankful for our new washer but I'm not terribly sure that it is new and not just new to us. We purchased it from the scratch and dent outlet and one assumes the items are there because they were somehow damaged in transit but I keep seeing little details - a knick here, a chip there, and even what looks like a small splotch of paint dribble on it - that have me skeptical of my own previous belief that our home is the only one in which it has resided. Regardless, it works very nicely and should anything go bad on it, we did something we never do: we bought the extended warranty that covers everything.

After being without a washer for three days when the transmission konked out on our old one, a time in which we are potty-training no less, I consider myself fortunate to now be able to spend some time doing the labors of laundry. Although I take pride in my laundry organization system that consists of two three-bin laundry sorters and only requires that I do one load per day most days, laundry is not exactly something I miss when not doing it. Factor in several pairs of toddler underwear that have either been wet or soiled, and it's a recipe for making me want to be a laundry goddess.

2) This week we had our first DAN! appointment. It wasn't as productive or as informative as I had hoped but we did get some lab tests and additional supplements added into Reiss's already wide-ranging regimen. I am thankful for the appointment because otherwise we would have had to wait until October to see another DAN! provider in our state, as there are only five and they all have schedules that are booked up right now a year in advance. The provider we saw yesterday has only recently become DAN! certified (October 2008) so his schedule isn't quite so full yet.

We have been doing a lot of research on our own regarding the DAN! protocol and the biomedical approach to autism and, as a result, we are already doing many of the practices (GFCF diet and supplements) covered in the initial appointment. I think the doctor we saw is either used to or was expecting to see a family who is totally lost in the world of autism and hasn't done any research or he's just so new to this himself that he wasn't sure which route to take with Reiss. That's not to say we thought he is incompetent, I just don't think he was prepared to see someone who has done their homework as much as we have done ours.

3) Lastly, I am thankful because of all the awesome behavior Reiss has exhibited this week. He's not been an angel by any means but he has had a very good week as far as having fewer tantrums than usual, being more compliant to change and transitioning during the days' activities, and his overall good mood just seems atypical for him in comparison to what we are used to dealing with on a daily basis. Maybe it's the diminishing cold weather and the coming of Spring that has him on the upswing...whatever it is, I'm definitely not complaining and I hope it sticks around.

Oh, Really...???

Thanks to Chrissy for posting the link to this wonderful article written by Jim Carrey on The Huffington Post:

The Judgment on Vaccines Is In??

The great thing about this article is the way Jim comes across as simply asking people to at least consider the possibility of vaccinations being linked to autism...because really, I don't care what anyone out there thinks they know about autism, NONE of us will ever know the real cause until more testing is done. And that will never happen as long as there are people like Dr. Paul (Pr)Offitt and others like him out there running the show.

Nothing frustrates me more than a doctor, medical professional, or parent of a typical child who has not done their homework regarding vaccines, yet is dead-set in the belief that vaccinations play absolutely no role in the cause of autism. So many times I have had to bite my tongue and not tell them, "Don't share your opinion with me because you're not living with autism like my family is doing every single waking moment." While those people can shelter themselves with ignorance and hold their stance all day long, I don't want to hear it - I have done my homework!

Tuesday, April 21, 2009

Tantrum-Free Target Tuesday

Yes, I am back to my infatuation with alliteration.

Today has been one pretty terrific Tuesday, although I have to say that even I am a tad amazed at being able to say that after getting Reiss home from preschool and experiencing tantrum after tantrum....and that was just the first ten minutes after arriving home.

We got home and Reiss didn't want to come in the house. Then he got mad at his drink for dripping water on his jacket and pants. Stupid sippy cup! I tried to explain that his jacket wouldn't have gotten water on it had he taken it off when I asked. I left out the part that it would have been his shirt that got wet had his jacket been off but whatever...moving on. He then threw a fit because there were only two things (salami and pineapple chunks) on his plate and not four things and that's when I got the peas and corn out of the fridge. Then it was his peas that were the cause of his upset. Darn things kept falling off the plate.....after he kept pushing them to the edge, of course.

We all ate lunch and Reiss kept asking for more peas. Yes, I know that is probably a dream for most parents! So he kept asking for more peas and I kept piling them on his plate. He was ignoring his salami slices though, so I had to start bribing him into eating one slice of salami per one more spoonful of peas. I'm all for eating peas but we have GOT to get protein in the boy too!

As Reiss ate more and more, his mood started to lighten. When he finished, I gave him a big hug and made a big ta-da out of how well he ate and he seemed pretty content. After getting his cup refilled and some shoes and socks on Milla, it was off to Target we went.

For some odd reason, there are certain stores where - as soon as we pull into the parking lot - Reiss will begin yet another tantrum about how he doesn't want to go into that store. Target is one of those stores. But Target is where I have found the "pretty girls" (what Reiss calls Milla's hairbands and bows) I like to buy for Milla and she has been in need of more of them for a few weeks now. I've been talking for days now about going to buy more pretty girls and, as a result, Reiss has also been saying "Wanna go buy more pretty girls." After a quick glance in my rearview mirror, I caught the beginning of Reiss getting a big birdie lip and a few tears and then there was the whining, "Don't wanna go in this store. Don't like this place."

Before I go any further, a little history.....Typically, I do not try to accomodate tantrums in ways in which I think doing so will make Reiss think he is being rewarded for bad behavior. However, having said that, I will fess up to several occasions when I have left a store's parking lot at the first sign of him throwing a fit about not wanting to go wherever we are going. Seriously...why fight about it? The most likely outcome is going to be that his fit escalates into an all-out tantrum and taking that kind of behavior into the store with me just isn't something I want to do.

Today was not going to be any different as far as me wanting to haul Reiss into a store kicking and screaming so I tried the only thing I could think of at the time to try to avert the inevitable tantrum: I lied.

I told Reiss that Target was the only place we could get pretty girls. Yes, it was a lie but I knew it was his currency for getting us in the door tantrum-free since he's been talking about buying pretty girls for days. Much to my surprise, it worked! He said, "Wanna go buy pretty girls." It was like clouds moved, skies opened up, the sun came out bold and bright, and a chorus could be heard.......LAAAAAAA!!! There are no words to describe it - I really think I was in shock.

Records were probably broken for the amount of time it took me to get the stroller out, Milla strapped in, Reiss out of the truck and into the store. We walked - yes, I said walked - around Target. Reiss didn't run even once. Maybe it was the stern warning (or maybe it was warnings since I probably told him at least twelve times) I gave him that he was to hold my hand in the parking lot and the stroller in the store or we would leave IMMEDIATELY. He did not hold my hand or the stroller the entire time in the store but he did not run from me even one time. I'll say it again: He did not run.

To any parent of a typical child I'm sure this doesn't seem significant at all but this was BIG for us. This is one of the very reasons I don't go out a whole lot during the day without my husband to help because Reiss runs from me wherever we go. The stroller is of no use because getting him into it without a tantrum is next to impossible but more important, he knows how to undo the straps. The harness/backpack restraint/leash/call-it-whatever-you-want thing is useless because - like the stroller - he throws a tantrum at even the mention of it and in the rare instance I can get it on him, he can get it off.

We casually walked around and looked at things and for the very first time since Reiss was young enough to not put up a fight about being in the stroller, I actually felt like a regular parent out for a no-stress trip to Target picking up a few items we needed and some we didn't. It was an amazing feeling. We did have some of the token harassing back and forth between Reiss and Milla - Reiss grabbing Milla's arm...Milla grabbing Reiss's glasses if he got too close to her...Reiss pulling Milla's pretty girls out of her hair - but otherwise, it was actually (dare I say it???) relaxing to just walk and look at things and get to shop.

On a side note, Reiss has been carrying around a little leather business card protector that James received as a promotional item from a hospital for which he did some work. Until last night when James got Reiss a real men's wallet, the business card protector served as a wallet for Reiss because Reiss has to do everything like Daddy.

Have I ever mentioned that Reiss's glasses do not have real lenses in them? Daddy wears glasses and because Reiss has to do everything like Daddy, for awhile he was wearing a pair of safety glasses. That is, until grandma went and got him a real set of frames with fake lenses.

Anyway, as usual, getting off-track here....So Reiss was carrying the business card protector around Target because I didn't want him to lose the real wallet and my thinking ahead was a darn good thing because he lost the business card protector. We paid for our stuff at Target before I discovered this and then we back-tracked our steps without success in finding the protector. We drove the stroller over to the customer service desk and someone had actually found it and turned it in.

Now, call me cynical but I really didn't expect someone to turn a lost item in to customer service - not even a worthless little business card protector. So, in addition to getting my mommy mojo back, our Target trip was also a lesson for me in keeping a level of faith and trust in our fellow mankind to do even the most trivial, unexpected favor of honesty.

Monday, April 20, 2009

Pee Puddles and Toilet Paper Truffles

Today has been an interesting day. Well, it's only late afternoon right now so perhaps I should say that today has been an interesting day, so far.

After reading about playing dollhouse several times in the last few weeks on 18underoneroof, I got motivated to drag out our garage sale dollhouse to the playroom. We set some of the dollhouse furniture up and played for awhile. Milla was agitated because the little girl figurine kept falling off the potty. Reiss was insisting that we make the little vacuum cleaner work. I continued placing little pieces of furniture in the house and wondering how much lead might be in the paint used on all of it. The stuff is pretty darn old.

After a bit of playing appropriate dollhouse play, they both reverted to something I am now certain James should never have taught them. They both stood inside the dollhouse and began to shake it furiously with Reiss exclaiming, "Earthquake!" And after a few seconds of that, dollhouse time came to an end with furniture all over the playroom floor.

We are still potty-training Reiss and today has not exactly been a stellar day for successes in the bowl. Reiss normally does not tell us basic needs or wants and one can only imagine how difficult this makes potty-training. In addition to taking him for routine visits to the bathroom, we remind him to tell us when he needs to pee or poop. He'll say, "Are you peein'?" or "Are you poopin'?" And that's his way of telling us. However, here lately, it has turned into somewhat of a game for him and he sometimes says it when he doesn't mean it.

This morning after a few visits to the bathroom he came and told me, "Are you peein'?" So we hurry, hurry, hurried to the bathroom and he had done a tiny tinkle in his Elmo underwear. He sat on the potty and didn't do anything, so we got up. Got his pants off, new underwear on, same pants put back on because the pee did not soak through the underwear to the pants, shoes on and we were ready to go. Thirty seconds - if that - later we were in the kitchen and I was starting lunch and he said, "Are you peein'?" Only this time he really, really was peein' - and puddles - literally. Had it been in the potty, it would have been one heck of a reward but as it was, I had to strip him down, put his shoes and clothes in the washer, wipe up the pee puddles on the floor, and get Reiss clean clothes to wear.

After Reiss's pee clothes had gone through a cycle in the wash, I went to put them in the dryer only to discover our next obstacle of the day. Our washer has been acting up in that it will only spin a little bit or not at all. Usually I can go in there and fiddle with the washer's tub and get it to spin. Not today. Thank goodness we have someone coming in a little while to look at it. I don't really want to get a new washer and going without during potty-training is unacceptable. I'm not being a cheapskate here by not wanting to get a new one. I would rather just use the thing until it either dies or explodes. In the last thirteen years, we have had four washers. FOUR!!! Part of the reason - I'm sure - we have to keep buying them is because every time one goes bad, we have gone and gotten the bottom of the line, dirt-cheapest model Sears has to offer. Not this next time. If this one is bad now or whenever it goes bad, we are spendin' some money! anything made to last anymore? Well, it may be worth mentioning that we have had the very same dryer all thirteen years and only had one very minor problem with it in all that time.

After lunch, which took about an hour and fifteen minutes to make with all the stuff going on, we went back for another bathroom break. Milla wanted to play with the toilet paper but instead of obliging her with the entire roll, I gave her one little sheet - you know, one little perforated square. She wiped the bathroom drawers with it and then pretended like she was blowing her nose. Meanwhile, Reiss sat on the potty and we sang the ABC's, The Itsy-Bitsy Spider, Mary Had a Little Lamb, Milla Had a Little Lamb, Reiss Had a Little Lamb, and Twinkle, Twinkle Little Star. I looked over at Milla and she had taken her toilet paper square and wadded it up into a ball. She was looking at it and studying it and then POP! Into her mouth it went! Yummy....What fun it was fishing all that soggy toilet paper out of her mouth and scraping her tongue with my fingernail to get the leftover remnants. Oh, the joys of parenting. No job for pay can offer these kind of benefits.

Sunday, April 19, 2009

Some Saturday Photos

Hail, Sandbox!!!

Reiss and Milla in the sandbox...

Milla decorating her ride...

Reiss and Milla shoveling the sand...

"Um...I'm working here."
At one point, Reiss did actually say, "No pictures."

Sand, sand, everywhere!

They loved all the new sand. James is proud of himself for getting it for $1.50/50lb bag.

Surprisingly Great Weekend

After the kind of day we had Friday, I wasn't expecting for this weekend to turn out as nicely as it has. I am happy to report that the amount of back and forth toddler harassing between Reiss and Milla has been about equal the last two days. Given most families' circumstances, any amount of harassing behavior between children would most likely not be cause for celebration. However, considering our family's circumstances and the fact that Reiss seems to consider pestering Milla a favorite pastime, it's nice to see when she gets in a pinch or a shove every once in awhile.

Friday evening I told James I was planning to go redeem my Gymbucks on Saturday morning. He wasn't thrilled with the prospect of having to watch Milla at a time when she is usually looking forward to her morning nap. The weather had other plans for me though. Saturday turned out to be a beautiful day and the mall was no place to be on a day that was such a rare treat for the month of April in Indiana. James had to do some work-related stuff and I was glad I had RSVP'ed for a birthday party for a little boy in Reiss's class that we wouldn't be able to make it because - well, we wouldn't have made it on time if we had tried.

Later on, there was a ton of stuff to do and yard-work to do. Reiss helped Daddy "work." I did some things that were getting behind in the house - a.k.a. laundry, dishes, bills, etc. - and then went outside to play with Reiss and Milla. We played on the swingsets...we threw sand everywhere in the sandbox and in the grass...we walked a little way into the woods to look for mushrooms. Well, not really. They played and I walked a little way into the woods but only far enough where I could still see them playing. Didn't find any mushrooms but really didn't expect to either. We have lived here six years and have not found any mushrooms since the first Spring of being here.

We came in for dinner and then decided to go burn up some gas driving around. Okay, not really. We weren't just driving around aimlessly. The plan was to go to the health food store before it closed so that I could replenish some supplements and get Reiss some Enjoy Life candy bars as a special reward for when he makes big strides in potty-training. And yes, I'm aware you're never supposed to use food as a reward but when you have a child with autism and sensory issues and other kinds of things going on, you do what you can and so far, chocolate is the only motivating factor for Reiss to produce "results" in the potty.

So we went and got the candy bars and then Reiss wanted to drive by his "work," which is just what we calls the school where he attends developmental preschool. Since it was kinda on the way to our next stop and not terribly off-track to getting there, I didn't argue against it. We went to the school, did a drive around the parking lot, and then it was on to Chick-Fil-A to get a "Daddy Pop" - what Reiss calls Sprite - and play in the play area. We do not keep soft drinks in our house, so Sprite is a special treat. By not keeping it around, it ensures that we - Reiss and Milla, to be specific - aren't drinking it all the time. We got to Chick-Fil-A and played for quite awhile and things were winding down and not a minute too soon because some creepy man came into the play area. I really do think he was the grandfather of one of the children in there and not just some pervert hanging out but he gave me the willies, nonetheless, so I got Milla and James wrapped things up with Reiss and we left.

Today turned out to be a perfect day for the mall because the skies have been gray all day. I'm always excited whenever Gymboree has Gymbucks earning and redemption times because I am able to stock up on clothes for super-cheap.

Most people think of Gymboree and think their clothes are so expensive - and they are right. But most people don't shop at Gymboree like I do either. I have several rules set for the way I shop there, including but not limited to only shopping the sales and clearance racks and ONLY shopping during Gymbucks earning and redemption periods. There's a lot more to my method than that but I won't bore anyone with the details of my strategies for bargain-hunting there or the gratification I get out of doing so. Suffice it to say that by sticking to my "rules" of shopping, I pay less for brand-new clothes from Gymboree for my children than my mother-in-law pays for second-hand, sometimes not-in-such-great-shape clothes for them from Goodwill. And no, I have nothing against second-hand clothing but when it has seen much better days and I know I can pay less for new clothes at Gymboree, why bother with the hassle of having to sort through literally thousands of things at Goodwill just to find a few things worth taking home?

My Gymboree extravaganza this afternoon was quite satisfying and much to James's surprise, very quick. This was a good thing because he was in charge of "entertaining" Reiss and Milla there at the mall while I shopped. They went and rode a few of the horrendously priced ($0.75 and $1.00 each) little toddler rides. That may not sound like a lot to pay but it's a far cry from the penny rides Meijer used to have in their stores. Yes, used to have. They took them all out and I don't know how true it was but I heard it was because some kid got hurt. Poor kid...I really do feel for him if that is what happened but, at the same time, I'd bet my left arm it was a child whose parents gave him the penny and sent him on his way rather than stand right there to help and keep him safe. I saw that kind of thing all the time when they had those rides in there.

Anyway, getting off-track here...what's new. So they rode the rides a few times and then stood outside Johnny Rockets and listened and watched as the employees sang and danced around and then by the time that was all over with, I was done! Amazing! I bet I wasn't in Gymboree longer than twenty minutes and that's pretty impressive since - even with being only four days into Gymbucks redemption - everything was pretty picked over and I was having to do some serious bargain-hunting. I came away with some really good stuff and one shirt even rang up for a dollar-something. Now who says Gymboree is too expensive???

After Gymboree, we headed back to Sears, where we came in. Reiss played on the tractors and Milla ran around the lawn furniture. I chased her for a little while and she just thought that was loads of fun and giggled the whole way. I then plopped down into one of the chairs and my goodness, was it ever comfy!

We left Sears and the next stop on the agenda was to go to Gander Mtn. This morning I had this brilliant idea to go to an "outdoors" kind of store like Gander Mtn. or Dick's Sporting Goods and let Reiss and Milla play in the tents. Well, it seemed like a brilliant idea until we got there and there was only one tent set up. The rest of the floor models were displayed up high on the walls. Oh well. We also went and looked at the live bait, as in, minnows. Reiss really likes fish so this was pretty neat for him. My other reason for going there was to hunt down a stainless steel tiffin set for Reiss to take snacks to preschool and lunch to Parent's Day Out. That was a bust and I figured it would be so back to shopping online for that.

After all that, it was home for a nap for Milla and that brings us up to now....Off to make dinner: fried chicken, mashed potatoes, and green beans. Gotta get in some comfort food before I have to be good again and continue eating low-carb starting tomorrow. I cheat on weekends and although I still stick to GFCF and all my other rules, I eat considerably more carbs on the weekends. As long as I am good during the week and naughty on the weekends and the weight keeps falling off...why be good? >:)

Friday, April 17, 2009

FINALLY Friday!!!

There is a quote that goes something like "Any day I wake up alive is a good day." I don't know if those are the exact words and I don't know who said it but I am certain that person was not living his or her life as the parent of a special needs child. Today is not a good day and right now I would rather just go back to bed and sleep for about three days. But alas, I haven't gotten a full night's sleep in over four years, much less spend days in bed.

Our morning started out with Reiss telling me approximately 1637 times that he wanted to leave for playgroup. It wasn't time to go yet and that wasn't satisfying him. When we did finally go to playgroup, he harassed every child there, some of them more than one time. He got a break (this is just Reiss's name for a timeout but again, for some reason, he gets bent out of shape if we call it a timeout) after being told two times not to do whatever he was doing (it was different with each child) and then given a final warning. After his break, he continued going from child to child doing various different things: shoving toys in faces, slapping hands, pushing, putting his arms tightly around the other child, taking toys from others, squeezing their hands as hard as he could, you name it.

Before Daddy left for work this morning Reiss was given the usual talk about the behavior that was expected of him at playgroup. He and I had the same talk on the way to playgroup with an additional warning: If he acted up at playgroup, we would leave and he would not get to go see Daddy and take him something to eat at lunchtime. Well, here it is - a time at which we are normally at Daddy's office on Fridays - and we are at home. So you guessed it, Reiss did not heed either of the behavior talks and we came home without taking Daddy lunch. We ate lunch at home. Well, we didn't really eat lunch but that explanation is to come.

The playgroup we go to on Friday mornings is actually called a Share Group and it's a few women - all with young children - who get together and in between all of the chaos of the children playing around us, we have a little bit of Christian fellowship. Most of the moms can generally let their children play and they sit and talk with one another. In the years I have been going, I have only occasionally gotten to sit and talk while most of the time I have to get up about every 14 seconds to get Reiss back in line. As with the library playgroup we used to attend, it's getting old chasing him around and not getting to enjoy the same break that the other moms get. If it sounds like I'm complaining, call it what you want, but seriously, I would just like a break every once in awhile. I'm tired of having to spend my life getting up every few seconds because no form of discipline seems to be effective at getting Reiss to behave and do as he is told. I'm tired of being THAT parent out in public.


We came home because not getting to go see Daddy was Reiss's punishment for not behaving at playgroup. Reiss waited until exactly four seconds after I sat down and had gotten situated with Milla breastfeeding to tell me he wanted something to eat. I told him I would get him something in just a few minutes and OF COURSE, this prompted a tantrum. I was just over it. Normally, there is nothing more effective at getting me to move quickly than having to listen to one of my children cry, but I was just over it. Let him throw his fit. It wasn't even 11AM yet and I was exhausted.

Milla got done breastfeeding. I got up and made lunch. Milla wasn't very hungry - obviously - since she had just nursed for a few minutes. She started throwing her strawberries (actually just single strawberry, but cut up into pieces) on the floor. Reiss thinks he has to do everything she does so then he started. Another warning about throwing food on the floor. I took her food since she obviously only wanted to play. Reiss continued throwing his food everywhere. Come on! This is an almost-four-year-old! An 18-month-old throwing food is somewhat expected, especially when said child is not hungry, but a 4-year-old throwing food is just plain unacceptable. He had only eaten about three or four bites of his lunch when his food throwing started, and since I was over that too, I took his lunch away. Now, under normal circumstances, I don't believe in depriving a child food as punishment but when nothing else has worked today and I'm at my wits end, that's what it has come to.

It's finally Friday, but right now it just feels like Hell. Mommy needs a nap.

Autistic Boy used as Human Skittle - Northern Ireland

3 April 2009

(Autism Awareness in Northern Ireland - we have far to go)

"A Derry woman says she's horrified that a group of bullies used her seven year-old autistic nephew as a "human skittle" - hurling balls and stones at him in a bid to knock him to the ground.

The woman, from Fernabbey, says she's disgusted by the "inhuman" treatment of her nephew and has asked the Bishop of Derry, Most Rev. Dr. Seamus Hegarty, to intervene by helping to educate local people about autism. The boy's mother has also visited local schools in the area to ask for support from teachers.

"I'm asking the Bishop to direct the priests in Derry to speak to people at Mass this weekend," she said.

"This is a humanitarian issue. People are ignorant about autism. Children on the street can't be allowed to abuse a little boy for fun. It's National Autism Week and I want the priests of Derry to make people aware of their ignorance."

She revealed that on Tuesday night the youngster had gone out to play football with his friends.

"His mum went out to look for him only to witness them treating him like a human skittle. They were aiming the ball at him to hurt his little body. She shouted at them but they ran away. My wee nephew was badly shaken and distressed. Last year we caught boys hosing him down in the street."

She said her nephew loves playing with his friends.

"Some of the boys know he's different," she said. "But they see it as fun. Their parents are not aware it's happening. These children don't really care, they think it's fun, it's alright to abuse and mock, regardless of the innocent victim.

"I don't want anyone to suffer the pain of injustice, to feel like my sister and myself feel, the hurt, despair and terrible anger. If tears could make this alright, I'd never stop crying. He is a bright, intelligent seven year-old, who loves company. This lovely little boy with blond hair and big blue eyes is very lonely.

"Autism is such an isolation, but all these children need is normality, just like everyone else. My little nephew is normal, he's not stupid, he's quite clever. He feels emotion, pain, sadness and happiness just like everyone else. At seven years- old all he wants is fun with friends. He would be too trusting, this is the reason these little scumbags tried to hurt him. There's no excuse for injustice against this innocent angel.

"This must be stopped now. These thugs and bullies must never be allowed to do this to any child again, especially someone who can't defend themselves because they are autistic.

"This is Autistic Awareness Week and situations as serious as this incident must be highlighted now more than ever in chapels and schools. Parents must be made aware of this as well. These wee boy abusers are from the Galliagh area and I've asked the priests and Bishop of Derry to intervene and try and help as well. I don't want my sister or nephew to suffer any more grief.

"There's already too much pain in Derry because of other people, regardless of age.""

Thursday, April 16, 2009

Thankful for Three Things Thursday

It's "Thankful for Three Things Thursday!!!"

I am really glad I decided a few weeks ago to do a post such as this one every week. It has really made me reflect on things and how fortunate my family and I are in this world. Each week around Tuesday I find myself pondering the things around me that have made me happy or my life easier in some way.

This week, I am very thankful for.....

1) All the people who help us in some way to improve the quality of life for Reiss. Reiss only has mild to moderate autism and that, in itself, is something to be thankful for because things could be much worse (but just don't tell me how "easy" I've got it or you will face a wrath like you've never seen!). But I am very thankful for his preschool teachers and the teachers in his Parent's Day Out program. His preschool teachers are fairly used to being around children with autism but the teachers in his PDO program have gone out of their way to accomodate for keeping Reiss in the program and also learning about autism themselves.

2) My weight loss. Yes, I know I was thankful for this last week too but it continues and this week I was able to squeeze (barely!) myself into a favorite pair of jeans that haven't fit for more than two years.

3) Little potty-training successes. After nearly three weeks into potty-training Reiss, we are finally beginning to see some real progress. Using a reward system in the past has not been very effective for us but it has this time. Reiss really wants those few teeny-tiny chocolate chips. We are convinced he is even beginning to drink more just to go pee.

Wednesday, April 15, 2009

Shoe Fetish

Ever since Reiss was a Robeez-sportin' little tyke, he has had a thing about shoes. We have been through many phases of shoe obsession. First, there were the few months in which he had to have his Robeez on whenever he walked around on the kitchen tile and entryway linoleum, which I am happy to report are both GONE from existence in our home. After the Robeez, Reiss had a different type of shoe - a brown pair that could be worn either for play or dressed up a bit. The brown shoes had to be on his feet at all times, by his insisting. He would not wear anything else and he had to wear them to bed as well.

Reiss has been through a few pairs of shoes in his nearly four years of life - only about three of which he has been in shoes. We don't usually put shoes on our children until they are around one year of age. Milla started a bit early though. Anyway - off and on - he has slipped back into wanting to have shoes on all the time. This isn't such a bad thing when you consider a lot of children pull their shoes off all the time, but it doesn't work out so well when you want to go bowling or say, to Bouncertown (or other similar places where there are bouncers for kids to jump on) or any other place where the rules are "No Shoes Allowed."

The latest phase of shoe fetish we have entered into is taking pictures of our shoes.....

Mommy's and Milla's shoes

Reiss's shoes propped up. And right behind them, a small peek of Daddy's shoe.

And totally unrelated to shoes, a close-up of Reiss. I really like this photo because it not only showcases his beautiful blue eyes, but also because he is smiling - not something we are able to catch on camera very often anymore. It's not that he doesn't smile - it's just that whenever Daddy or I bring out the camera, a tantrum usually ensues about Reiss not wanting his picture taken. Usually, I just point the camera at him anyway and tell him I'm taking a picture of something else near him and that takes care of the tantrum. Call me a bad mommy for lying but a mommy has to do what a mommy has to do to get her babies' toddler-hoods caught on film.

Tuesday, April 14, 2009

Low-Carb Fiber "Fudge"

Since going back to eating lower carbohydrate foods a few weeks ago, I have gotten a little sweet tooth that needs to be satisfied. In order to stay on track and keep the weight falling off, I came up with a recipe (and I use that word very loosely since I do not measure any of the ingredients) for a concoction that closely resembles fudge. It is lower-carb, high-protein, and full of fiber. Depending on any additions you choose, this could be made to include not only a ton of fiber, but Omegas from here to Utah! No matter how you go about making it, it is sooo good for you!

Although I do occasionally throw in some of the optional additions, the "recipe" is how I have been making this most often. All measurements are approximations, as I just eyeball everything as I assemble it. Double, triple or multiply this as needed - the following will make enough to last about two days with only myself eating it by the spoonful here and there throughout the day. Do NOT be scared of the chocolate chips!!!

Low-Carb Fiber "Fudge"
2 T. nut butter - I use Maranatha Macadamia Butter
1-2 T. Enjoy Life GFCF chocolate chips
1 T. coconut milk
3 T. natural unsulfured coconut flakes

Optional additions:
flax seeds
sunflower seeds
raw cacao nibs (at 9 fiber grams per 1oz-serving, these are almost pure fiber)

Melt the nut butter, chocolate chips, and coconut milk in the microwave on 10-15 second intervals, stirring in between intervals. Heat only until melted or the chocolate will get gritty. Add coconut and chill until firm. If you're really "jonesin'" for a sweetie-treat, put it in the freezer for 10-15 minutes.

Yes, this recipe does have chocolate chips in it and generally, chocolate chips are not low-carb. However, because we eat gluten-free and casein-free as well, we always have Enjoy Life brand chips in the house and although they are only minimally lower-carb than traditional chocolate chips, they do not contain the higher glycemic index sugars. They are made up of literally only three ingredients: evaporated cane juice, chocolate liquor, non-dairy cocoa butter. That's a far cry from all the ingredients - some I can't even pronounce - in traditional chocolate chips.

There are endless possibilities with this recipe. You could switch up the nut butter to peanut butter and make it a peanut butter "fudge." Personally, I love the subtle flavor and silky texture of the macadamia butter. It's a perfect complement to the coconut and coconut milk.

In case you're wondering, yes, I can eat this delectable treat and still lose weight.

Sunday, April 12, 2009

Turkeys On An Egg Hunt

We must have taken a zillion photos today and finding my favorites to post was very difficult. Even though Reiss and Milla could only be coaxed into looking at the camera a few times, none of those photos made my cut to be placed on here. All of these are "action" photos - the best kind, in my opinion.

Reiss holding up one of the first eggs he picked off the grass.

Milla distracted from egg-hunting by the bubble machine.

Still playing with the bubble machine...Girl, we've got eggs to find!

Reiss playing with the wind-thingy. Milla getting up from a fall in the background.

Milla inspecting some of her loot.

Milla walking out of the flowerbed. She was looking at me but I cropped myself out of the photo, of course.

Reiss on the hunt......
Happy Easter!!!
Hope you have a blessed day!
Take a look at my new "Easter basket!"

Okay, so it's not really a basket but it does hold lots of tasty treats and goodies. This photo was taken just before noon and there was plenty of light, so I am not sure why it is so dark. Milla was in the highchair fussing and I didn't feel like messing around for five minutes to get the perfect shot so here you have it - our new refrigerator!

This stainless steel option is called "ultra-satin" and its main feature is fingerprints go virtually un-noticed on its surface. Notice how there is only one magnet on the front right now? Hopefully, it will stay that way. Our old refrigerator had so much clutter on its doors, it depressed me just to look at it.

Although I love this new refrigerator with its sleek stainless steel appearance, incredibly roomy interior, and - best of all - the "lockout" feature, which comes in quite handy with two very curious toddlers, I'll be totally honest and admit that I really didn't want to spend the money right now, after just having a bunch of remodelling done to our house. Unfortunately though, our old refrigerator kept leaking water out the bottom and with our new laminate floors, it was just too high of a risk to keep the old dinosaur and chance having the floors buckle under it.

The old refrigerator was at least twenty years old - if not older - and was inefficient energy-wise so bothering with a repair didn't make sense. Besides, we had a friend who does a lot of work with his church haul off the old refrigerator and I'm sure he will find a home for it with people whose options are most likely limited to having our old dino fridge or nothing. So, in effect, we really did recycle our refrigerator.

Friday, April 10, 2009


Yesterday, I had the best intentions of getting on here and doing my "Thankful for Three Things Thursday" post but it just didn't happen. I thought about punishing myself by making it into a "Fortunate for These Four Things Friday" but that's just silly. Seriously, I'm an adult and I am my own boss and if I don't get around to a particular post, who cares. My boss isn't going to ride me for it and I'm not getting paid to do this so is Friday, let's move on.

Having said that, I do want to mention a few things I am thankful for because one of them, cilantro, is pictured in this photo:

The recipe in the link calls for coriander but I used cilantro. Cilantro, for me, is one of those things that just gets me all giddy. I mince it all up and I'm like a teeny-bopper girl who just got a smile out of the most popular boy in school. It's ridiculous, really. Whenever I'm messing around in the kitchen with a cilantro bunch, my husband always tells me, "I used to make you happy like that."

We ate the salsa with chicken and salad greens. Nothing would make me happier than to say that it was grilled chicken but alas, I live in Indiana...and we'll leave it at that. No, actually, we won't leave it that. Remember how I was going on and on last Thursday about the buds on the trees, the warmer weather, and the animals frolicking outside? It snowed on Tuesday.

By the way, the recipe is a good one but besides substituting cilantro, I also used fresh garlic cloves - I don't remember how many. Knowing me, probably five or six. Next time I make it, I will leave out the olive oil and add more red pepper flakes. Honestly, I didn't see the need for the olive oil but followed the directions and threw it in there anyway. The element of "fire" just wasn't as strong as my tastes demand so I will probably the double the amount of red pepper flakes.

Another flashback: Remember the gratification I mentioned I get out of cutting with high-quality sharp knives? That same knife I posted a link for last week got a mind of its own this week and came after me, nearly slicing my darn finger off...while I was making the aforementioned salsa.

Now, I don't want to sound like I'm bragging here because I most certainly am not but I did want to mention my weight loss. I have been dieting for a few weeks with a few cheats here and there but I got on the scale this morning and my weight is now finally (for the first time in seventeen months) lower than it was the day I left the hospital after having sweet little Milla. Like I said, not bragging, just wanted to mention it because I am proud of my will-power and thankful for the loss.

In other news....

We are on Day #12 of potty-training Reiss. So far, he has not peed on the potty yet. He has done three practically microscopic turds on three consecutive nights but nothing else. I do find the poops to be somewhat encouraging but still wish that he would pee in the potty...and not down his leg.

This weekend we are going to make some exceptions to all my food "rules" and allow Reiss some mainstream candies for Easter. They will still be gluten-free and casein-free but I'm going to allow something with artificial dyes and flavorings and opt for Jelly Belly jelly beans, most likely. If I get time, I will also purchase an Easter-themed candy mold and melt down some Enjoy Life chocolate chips to fill it. Either way, Reiss gets candy so seldomly, he doesn't know what he's missing. It's not a big deal if he gets a tiny bit of naughty stuff like food dyes every now and then - it's the gluten and casein that are most important for him to avoid.

Well, there are children waking and garage doors opening, a signal of DH's arrival home....

Wednesday, April 8, 2009

A Spectrum Mom's Commentary on "Unlocking Autism"

Considering a slight feeling of disappointment I had in response to watching Unlocking Autism on Discovery Health this past Monday evening, I have been dreading writing this post. However, when I first posted about the program in an attempt to encourage others to watch, I made a commitment to come back and give my thoughts on it.

To be totally honest, I did not see or hear every minute of the show because, as is always the case in our home, the volume level in our house is incredibly high. And I don't mean the tv. DVR'ing shows is not something we do for one very simple reason: The show would never get watched. We are exhausted by the end of the day and whereas most people put their children to bed and then watch tv or do other things that need to be done, we do not. When the kids' heads hit the beds, so do ours.

From what I did see, I got the impression the show was made more for people in general, not parents of children on the autism spectrum. While this may sound disappointing to me, really, it's not. I am all for any type of educational programming dealing with autism, no matter who it aims to have as the intended target audience.

One thing I was impressed by was the choice of the child who was the main focus of the program. Although I think the narrator mentioned the child had moderate to severe autism, the boy who the narrator spoke of for the majority of the program did not exhibit the stereotypical symptoms of autism that I think a lot of people think of when they hear the word "autistic." He was not running around flapping his arms and acting all haywire. He wasn't out of control. He simply had some problems with being non-verbal, a tad sensitive to noises and things out of his control, and some other things. It is really important to me for people to understand that not all children on the spectrum exhibit Rain Man-like symptoms. As a matter of fact, most spectrum parents are flat out offended by the mere mention of such a disaster of a film. While some people with autism are savants, like the main character of Rain Man, the majority are not. I do not have any numbers in front of me at the moment, but I recall reading something awhile back that said that less than one percent of autistic people are savants.

The aspect of the show that I found most disappointing was its negligence in providing a broad perspective on treatment options for autism. There was one doctor the producers interviewed and his opinions were the only ones offered. Although I do not recall his name, he practices at the MIND Institute, mentioned in this article. The article makes a reference to gluten-free, casein-free diets and that research has "found that many children on the restricted diets become nutritionally deprived." To which, I would reply is most likely a result of the parents of those children not doing their "homework" per se, and not following the diet properly and in the manner it was intended. The doctor interviewed in the show did not go into any great detail mentioning the diet, but I wonder if he feels the same way about the diet as others at the MIND Institute do.

My family and I have been on a gluten-free and casein-free diet for months now and I dare any doctor to declare my children as nutritionally deprived when we feed them healthy servings of meat and poultry, vegetables, and fruits every single day. I would even go so far as to say my children are better off nutritionally than probably the vast majority of American children. When, or perhaps I should say if, the medical community in this country finally realize what doctors in many other first-world countries already know - that dairy products are not a human dietary necessity and that grain products did not play a role in the diets of ancient mankind - I think there are going to be a lot of extremely embarassed "well-educated" professionals out there. But that's an entirely separate rant post.....

Monday, April 6, 2009

Saturday, April 4, 2009

Couldn't Have Said It Better.....

This may offend some and I sincerely apologize but I found it humorous and true in so many ways. I do not know who the original creator is so I will give credit to Natalie, the person from whose blog I abducted the image.

Thursday, April 2, 2009

Thankful for Three Things Thursday

It's Thursday and that means it's time for my "Thankful for Three Things Thursday" post!

This week, I am thankful for....

1) Sharp knives. There is nothing more dissatisfying than sawing through a potato or sliding around on a tomato skin in an attempt to cut with a dull knife. As I pulled out my Furi knife this morning to whack and mince some garlic cloves for fresh homemade Italian dressing in my Pampered Chef Measure, Mix, & Pour, which I absolutely love and have an order in for two more, I was reminded of the gratitification I get out of using high-quality, razor sharp knives. They are indeed one of life's affordable luxuries that provide repetitive gratification without repetitively investing in them....unlike the spa facials I have been treated to once per month for two months now.

2) My own open-mind. Going into extensive, boring detail regarding what has me in this latest funk and why I'm thankful for my own ability to see gray area is not something I feel like partaking in or wasting time doing. Nor do I feel like representing myself as a Debbie Downer by putting it on the shoulders of anyone reading. Suffice it to say that, at one time, I may have been a black and white thinker but I am glad I now have the wisdom, maturity, and respect to consider the views of others and the possibility that those views held by others may be just as "right" as I feel mine are - even when we disagree.

3) Green grass, buds on the trees, and warmer temperatures. Without fail, every single year around March I get to a point where I am so sick to death of winter that I start cursing the weatherman and reminding my husband of how I could be living in Texas...had I not met him. It drives him crazy but even the smallest promise of nice weather in February or March only makes my Spring Fever come out in the worst of ways. Although we had warmer temperatures tease us a few weeks ago only to turn to snowfall the following week, things are finally moving in an upward direction on the thermometer. I am thankful to be able to look upon my kitchen windowsill and see a small clipping of our forsythia bush, with its perky little yellow flowers, that was brought in by my sweet little munchkin son. It's nice to see the buds on the trees, grass getting greener and taller, and more animals scurrying around and chasing one another.

World Autism Day

On Tuesday in Belfast, my friend and I watched from our car as a small gaggle of children and their parents descended on Stormont to "Stand Up for Autism", AutismNI's "contribution" to World Autism Day which is today. We saw the balloons, filled with hot air go up into the ether, just like they did last year. They will eventually pop just like the hopes and dreams of the parents whose children have been diagnosed in the last 365 days. For many of those parents, requests for services and understanding have received the same hot air that filled those balloons.

From our vantage point we could not see the steps of Stormont, but imagined the children, just like last year, being forced into a photo shoot to show the world the "face" of autism.

We thought about how many of those children had dual diagnosis, like bi-polar disorder, Alexithymia/ADHD/ADD/Dyslexia/Dyspraxia/Hypotonia/ Sensory Integration Disorder/Mitochondrial Disease/Diabetes/Down Syndrome/Cerebal Palsy/Auditory Processing Disorder, etc. We also thought of our own children's many medical and neurological conditions, problems that rarely get a look in where their label is concerned.

Subsequent photos of the Stormont event will probably be accompanied with text portraying these children as the face of autism, when really, autism is multi-systemic, incredibly complex and does not begin or end with the A word. Actually, if my child 'just' had autism, there really wouldn't be a problem.

I wondered how parents whose children don't have a special "day" might be feeling about World Autism Day. If our children had cerebal palsy or muscular dystrophy, we would want to know why our children's condition did not have its own day.

After further discussion we realised that this rally,apart from being a vehicle to bolster public exposure of AutismNI, actually detracts from the seriousness of the condition called autism, by making it appear as a singular difficulty. Most of us who are parents know that a diagnosis of autism is often accompanied by other equally serious difficulties. Trying to explain or portray autism as having one or even two faces is not helpful.

Anyway, our concerns about this day were unfounded. Very few people attended the rally and even fewer were made aware of it via the media. The understanding of autism remains as elusive as it did prior to today.

Balloons are far less controversial though the 'hot air' metaphor is timely.

Wednesday, April 1, 2009

Why It REALLY Is So Difficult...

Like most children with autism, when in a group of children, Reiss is indistinguishable from other typical* children. One would not know Reiss has autism simply by looking at him. I don't know what people expect to see but you would be surprised how many times I've heard the comment, "Well, he doesn't look autistic." To which, I want to reply, "What does autistic look like?" But, of course, I don't.

In recent weeks and months, I have had several conversations with different individuals regarding the aspects surrounding Reiss' autism and the things that make him different from other children. Usually when people find out out his diagnosis, they have a lot of questions. Having others be inquisitive is preferable to them being judgmental any day of the week. I even tell people that I would rather they ask me questions and admit to their ignorance than to judge me and look stupid. Often this gets a little laugh out of them and loosens them up to not feeling so awkward while asking me their questions.

Between the conversations I've had and some of the looks I get from people when we are out, it has made me want to do a post like this for quite some time now. It is not meant to make people feel sorry for us or to make others feel badly for asking questions. It is meant solely to provide a better understanding of why it really is so much more difficult for parents of children with autism. This is also not meant to be directed at any one individual. If you are reading this and thinking I'm writing it because of a recent conversation you and I have had, please understand that this is something I have wanted to do for months - even before I began blogging.

It has been on my mind for a long time to sit down and write out the things that frustrate me and why I feel autism is so misunderstood and underestimated. It's almost like a longing to want to have a piece of paper - a crib sheet, per se - to give to people so they can see that when you simply look at Reiss and see a sweet little boy, that there is actually much more behind that little face and why parenting has been such a long road and difficult journey for my husband, me, and many other parents of autistic children.

With that, let me start at the beginning, back nearly four years ago...

Reiss was born in the summer of 2005. Other than being delivered by c-section because he was in a nearly-impossible-to-turn breech position, his birth was pretty normal. I didn't know what it meant at the time, but in the hospital at only a few hours old, the nurses informed - or perhaps I should say warned - my husband and me that "This one's gonna be a handful."

After leaving the hospital, like all babies, Reiss always wanted to get up to feed several times per night. At a few months old, we tried the "Babywise" method of getting him on a schedule of eating and sleeping. Not being one to tolerate letting a baby cry it out and eventually coming to the conclusion that it's not the method God intended, we ditched the Babywise method and never looked back. These days I warn any new mother against this method but all new parents have to do what works for them, I suppose. Personally, I believe it's about what's best for the baby and not me, but maybe that's just me.

At eight months old, Reiss had still never slept through the night and was literally waking up some nights as often as every 15 - 45 minutes. When I say it's not about what's best for me, I sincerely mean it, but by this time I thought I was either going to die from lack of sleep, go crazy, go on a shooting spree to let out some frustration, or all three. Something had to be done and that is when we decided to let Reiss co-sleep with us.

Other than the sleeping issues, Reiss seemed to be developing fine. He crawled at around eight months, walked at thirteen months, had several words in his vocabulary, ate a varied diet, and was pretty well on target with his milestones. The only thing that stood out - and only to his doctor, not us - was that he was only in the 5-10 percentile on his weight. The lactation consultants at the hospital where I attended a weekly breastfeeding support group assured me that he was fine on his weight. They went on further to add that most doctors get their baby growth charts as promotional items from baby formula consultants visiting their offices and that formula-fed babies generally tend to gain more quickly than breastfed babies. Either way, we didn't mind. He was gaining weight regularly so we didn't think it was a big deal.

At just before thirteen months, Reiss received his one-year vaccinations. Not long after that, we began to see some changes. Reiss seemed to be developing at a much slower pace than before. He started losing some of the words he had previously said. He used to do the cutest thing where he would excitedly say "awesome" and do a little fist pump into the air. He stopped doing it. He stopped dancing whenever he heard music. He didn't seem as coordinated as he once had been. As time went on, we kept noticing things here and there that just didn't seem right but parents of older children assured us that children develop at their own pace and Reiss seemed "normal." Unfortunately, we didn't listen to the one and only person who told us that we should call First Steps if we had concerns. After all, why should we have? Everyone else assured us Reiss was just like other children.

Fast forward to last year around this time. Reiss was closing in on three years old and by then, we were pretty sure Reiss had some developmental, behavioral, and speech delays so I called First Steps. Although I had read a lot about autism and knew Reiss exhibited some of the symptoms, it was the farthest thing from our minds. After all, a lot of typical children do many things that are categorized as symptoms of autism but they don't have autism - they're just doing things children do.

Because Reiss was so close to turning three and First Steps only deals with children up to the age of three, we were told to call the public school system. We did. In the meantime, we began seeking help on the medical front and I am not even going to explain all that but suffice it to say that Reiss was diagnosed with only one appointment. That was in December and the demand for help with autistic children on the medical front is so high that Reiss doesn't even have his second appointment until May! wonder parents of autistic children are so frustrated. Back to the public school system...misplaced paperwork, Summer Break, refiling the paperwork, jumping through an uncountable number of hoops, and having an evaluation later, Reiss was finally placed in developmental preschool in January of this year.

We have also begun using DAN! (Defeat Autism Now!) protocol in seeking medical help and Reiss has his first appointment with a DAN! provider this month! Because there are only five DAN! providers in the entire state of Indiana, we were going to have to wait until October to see one of the other providers whose schedule is booked up nearly a year in advance. However, the appointment we have is with a doctor who is new to the DAN! approach to autism and his schedule is - thank God! - not yet booked for months in advance.

That is pretty much the story of how we came to where we are now. As for addressing the issue of why things are so difficult, here is a list of things we face on a daily basis:

Reiss will be four years old in about three months. In his nearly four years of life, he has never technically slept through the night. If you count the medical definition of "sleeping through the night," which is (last time I checked) sleeping for six hours straight without waking, Reiss has done that less than a handful of times.

Imagine a child who not only does not respond to traditional disciplinary methods, but in many ways, does not even understand that the method is meant to be discipline or that he has done something wrong. That is Reiss. Timeouts have never been an effective means of discipline for Reiss. Taking things away rarely means anything to him because autistic children typically don't place a value on objects or others' feelings.

Reiss has severe impulse control issues. He cannot resist doing things even in the occasional instance when he knows what he is about to do is wrong.

Watching television is not something Reiss does. No parent wants their child to obsess over watching tv but having the freedom to plop a child down to watch an Elmo video for even five minutes would be nice. I don't have that freedom or that luxury. Reiss simply does not watch tv.

Self-entertaining is a challenge, to say the least, for Reiss. It's not that he never does it, it's just very rare. My days - when Reiss is not napping like right now - and my husband's evenings are consumed almost entirely with taking care of Reiss, keeping him entertained, and making sure he is not hurting his sister...which brings me to the next thing.

Along the lines of Reiss having impulse control issues, he is obsessed with trying to hurt his sister. There are many times when he plays very nicely with her. However, there are many more times when he cannot be left in a room with her without hearing her scream and my husband or I returning to the room to see him lying on top of Milla, pulling her hair, stepping on her arm, squeezing her head, or a variety of other things he likes to do.

Reiss is very fortunate in the speech department as far as autistic children go, in that he now has a very wide vocabulary. Unfortunately, he doesn't know how to use it properly in a lot of situations. He cannot carry on a simple conversation that a typical child his age could. Yes/No questions are usually met with a blank stare or repeating the question (echolalia) back to us. He cannot express simple wants and needs to us many times. It is only in recent months that he has - and not regularly - begun to tell us when he is hungry.

Reiss lacks social skills. If a group of children are playing, most often he is off to the side doing something entirely different. He would never walk up to another child and ask if they want to play because he not only lacks the social knowledge to do so, he couldn't care less the other child is even present.

Tantrums....oh, where do I begin? Let's just say everything is met with a tantrum. Since beginning all our diet restrictions, we have noticed a difference in the number of tantrums but Reiss still has way more tantrums than a typical child his age. His tantrums originate over literally anything. One might be over the color of shirt I've decided to wear on a particular day. Another may evolve because his food was cut up and we can't "put it back together." He has always had an obsession with his shoes to a point where he even wore them to bed for a long time. Asking him to take off his shoes is quite often met with a meltdown. The tantrum we face most often is when he starts crying and his face gets wet from the tears. He doesn't like his face being wet so he wipes it on his shirt...then his shirt is wet and then more crying because he doesn't like that either. And it's a vicious circle that's like chasing your tail because he doesn't grasp the concept that if he would stop crying, there would be nothing to get his face and shirt wet.

Reiss lacks coordination. We can show him the simplest of moves and he cannot duplicate them a lot of times...things that Milla can.

Sitting still is non-existant for Reiss. Besides eating such a strict diet, this is another reason why it is next to impossible to take Reiss to a restaurant. It is also nearly impossible to take Reiss places on my own without help from my husband because Reiss runs away and is gone in a flash. Putting him in the stroller doesn't solve the problem because he knows how to get out of the seatbelt. Putting the "leash" on him no longer works because he has a never-ending meltdown at the mention of it. Disciplining him for running doesn't work because, again, traditional discipline does not work with him and we have yet to find the magic method that not only works for him, but makes him learn not to do whatever he is being punished for again in the future.

Things have to be "just so" for Reiss. I will give credit where credit is due. Reiss has gotten much better at handling things that change but it used to be that if he was playing with say, the blue truck, and had left it and came back to find it moved - even a fraction of an inch - it was cause for an all-out meltdown.

Now I know a lot of these things sound like typical four-year-old behavior. And I've even had people tell me, in not so many words, that I should try to keep my frustrations at bay a little better because whatever Reiss is doing at that very moment is just him being a four-year-old. However, what those people don't see is that I have not only had to deal with whatever is going on at that moment, but all the other stuff that goes on constantly. When I have to "put out a fire" practically every waking moment of every waking day of my life, when sitting down for more than thirty seconds at a stretch is a complete luxury, when I feel trapped because I love my child so much but just wish he would be "normal," when I have to worry that my child may never have friends (this is the absolute worst and breaks my heart), when I hear other parents complaining about how poorly their children does this or that and know that my child may NEVER do it at all, grates on me. And that is why it really is so difficult having a child with autism.

*I have explained this on many occasions but feel it necessary to repeat: "Typical" is the politically correct term used for referring to children who do not have autism or other disabilities. It is not meant to be derogatory and I am not the one who declared it to be the term to use. This term is used in every piece of autism-related piece of literature I have come across.