Sleepy Guys

The weekend was glorious! Warm weather, fun outside, plenty of playing and plenty of things on the Honey-Do list finished. We now have bunk-beds in Bug Boy's room and mulch around our playset. The house is relatively neat (except for the oft-untidy basement playroom, but that is nothing new) minus the floor, which looks like a protest against Martha Stewart.

The boys played HARD this weekend. They were filthy-dirty, covered in mulch and grass. The sunblock seems to be a dirt magnet. My tub has RINGS, folks! I kid you not!

We thought that since they spent the majority of their time outside this weekend, climbing, running, riding bikes, playing with friends, pulling wagons and just generally being kids, they would become EXHAUSTED by bedtime. N.O.T. We thought a warm bath and a good meal in their bellies would be the catalyst for getting them to sleep soundly. W.R.O.N.G.

For some odd reason it was nearly impossible to convince them that the day was done and the mommy and the daddy were tired. All three evenings this weekend were a chore. They were literally bouncing off the walls. The fact that it is still light out when they are crawling under the covers does not help our slumber cause. Since they are up in the wee hours with the roosters and sparrows (and rabbits and the *^&$% squirrels eating my trash) they are not getting much sleep. In fact, we aren't getting much sleep. And who is more important? That's right. Me.

If Momma ain't happy, ain't nobody happy. If I do not receive the required (not desired, required. Let's be honest here!) amount of sleep, I do not function. At all. Add in the cold that has lingered for a month, the second round of antibiotics, the muscle relaxant for my current back issues and it all makes for one tired momma. Eight Hours. I need EIGHT HOURS. I managed to make it through the infant years because Bug Boy sleep every two hours and so did Momma. Bugaboo was one of those dreamy babies who slept seven hours his first night home and kept that up until toddlerhood, when we first suspected the seizures. Even still, he sleeps solidly through the night these days, rarely waking. When he does stir it is for a mere moment and he drifts blissfully back into slumber wrapped in momma's arms with his little feet tucked between my knees.

The past three nights I figured out (because I am a math tutor, and I am good at this stuff) that they have each received a whopping 8.5 hours of sleep a night. Since it takes me over an hour to get through my routine at night, picking up the floors and finishing chores, that leaves me with about seven hours of sleep (this is the Mj version of math we are talking about, if you are lost). I am often up before them to start breakfast or hop in the shower. 8.5 hours is not enough for these active boys. I mean, some boys can function on that. My children cannot. They are beyond reasoning with , super cranky, puffy-eyed, whining and miserable. Every little thing is a major ordeal. Here are some examples:

• Since our niece was with us Saturday evening and we did manual labor for twelve hours, we decided to go our for pizza. Bugaboo normally does well at this local, family-friendly pizza joint that we frequent. At five in the evening (when kids are hungry) the place is dead. Bugaboo even sits most times, but not this time. He insisted on being in the lobby area where the take-out customers wait for their food and wanted to peruse the soda and chip section. He does not drink soda, just molests Pepsi bottles. He then found a brand of chips he recognized (because he is so picky that he can distinguish between brands of food and drinks) and would not give up. To get him to return to the table I handed him a small, blue bag of chips. He seemed satisfied. We got to the table, he had a meltdown in the booth (luckily there were only two little old ladies giving me the hairy eyeball that evening, I may have flipped them the bird). He dragged me BACK to the chips and sat and felt up the bags. After picking up three or four and hurling them behind his back, he finally found the color bag he wanted. RED. Never mind that he has never in his life had a ruffled potato chip. Tonight he was going to open that red bag at all costs. And we did. Upon returning to the table he parked himself on teh booth bench, reclining with his chips. I could not move him. I ended up sitting at the end of the table on a chair. At least he was quiet. Until he climbed under the table and ate things off of the floor. Things we did not order. Ewwwwww...

• We go to TJs every week (sometimes more, because I am addicted to that place). There is this great guy there who makes balloon animals for the kids and always remembers their names. Bug Boy loves to go in with me (while Darling stays in the car with Bugaboo because Bugaboo hates to food shop) and loves getting a balloon animal or light saber, whatever is being twisted that day. We arrived at home and it was nearly bed time so Bug Boy put the animal down in order to get ready for bed. He put it down. On the floor. We have a dog. You know, with claws? Yup...let's just say that a three-hour bedtime battle ensued. He could not go to bed without a balloon animal! It was important! He would NEVER fall asleep without it! He is staying up ALL NIGHT! ALL NIGHT! He was NEVER going to bed again! We had to drive RIGHT BACK TO TJ'S!!!

• More examples: Bugaboo insisting on being barefoot with no pants but had to have his winter coat on. In 80 degree weather. Bug Boy wanting to wear flip flops to church. Bug Boy sneaking binoculars into church and was surprised at my reaction. Bugaboo climbing up and bringing me every single one of his clean, empty cups from the cabinet when I told him he couldn't have more juice. Bug Boy wanting chocolate chip pancakes for dinner. Cold. Bugaboo wanting M&Ms for dinner. It got better and better all weekend.

So you see, they can be a wee bit inflexible when they are tired. Who am I kidding? They are always this inflexible. I just think it is magnified to a certain degree when they are exhausted. And when Momma is exhausted it is even MORE fun in Chez Bug Boys.

Can we reverse daylight savings time. Pleeeease?

Bug Boy Makes Life More Fun

Bug Boy has some funky irrational fears. (that doesn't sound nice)

They are not irrational to him. They are to a bunch of experts who write that on pieces of paper to get services, but I digress...

Bug Boy can be afraid of things that we have never thought about. (There, is that better?)

In the beginning, we co-slept with both Bug Boy and Bugaboo. When they each turned two we moved them to the crib and then a bed when they were ready (well, actually, Bugaboo pretty much never slept in a crib since he climbed out at fifteen months and we were still co-sleeping). No, co-sleeping did NOT ruin our sex life. It did NOT make our children clingy. It did NOT cause SIDS, as the AAP would like you to believe (because, gosh forbid you sleep with your children!). It also did not cause their autism. I was just a lazy mama who was not about to walk down the hall to nurse my babies in the middle of the night. Somtimes Darling slept in the spare room if it was a particularly rough night. For the most part, our children have been THRILLED to sleep in their own beds since the age of two, and love their rooms.

The past few weeks with Bug Boy have been hairy, at best. He sneaks down to the Living Room while we are in the family room watching television or working in the kitchen. He climbs behind the couch or under the Dining Room table and falls asleep there, barricaded in by the couch cushions and pillows. When we've found him down there (after performing the nightly bed checks and realizing he has been missing for a few minutes) we have sent him right back to bed, only to find him asleep in our bed, on his floor, in Bugaboo's room, in the hallway and once asleep on his bathroom floor. He has not fallen asleep in his bed in three weeks.

A few years back we received (for free) a single-bed-sized car bed for Bug Boy. He was three and growing out of the toddler bed. Bugaboo was moved into the toddler-sized car bed that my crazy brother bought him on eBay. They seemed to enjoy the beds, although they NEVER slept (it was over a year before we found out about the night terrors and seizures). The toddler bed was uncomfortable and Bugaboo hated it. When we moved it went into the yearly borough yard sale. Bug Boy kept his bed. The only problem is that the bed (molded plastic) had vent holes in it. And our house is chock full of spiders and creepy crawlies this time of year, due to the swamp-like conditions outside. So, guess where they sometimes end up? Yup, in the vent holes of the molded plastic of his car bed. We have to vacuum it out about once a month, which requires taking the entire bed apart. How did we find out about this, you ask? Well, not long after we received the car bed (which was stored on my friend's porch) we noticed Bug Boy was waking up COVERED in bites from an unknown insect or spider. He would develop these severe reactions to them and a few times had cellulitis. He has not had bites in over a year because we have been diligent about cleaning out the bed. But a few weeks ago, Bug Boy had a nasty dream. And now he will not go to bed.

We have toyed with the idea of getting rid of the bed for some time. I have wanted to get a bunk bed or captain's style bed for sometime. I'd really like to get a bunkbed with a trundle under it so that when we have the cousins or other guests over, Bugaboo can sleep on the bottom bunk of Bug Boy's room and the guests can use Bugaboo's bed, which was the original thought behind buying him that frickin' expensive mattress. Right now Darling's Sister and her husband sleep on that gosh-awful futon in the basement, which is fine, but it is FAH-REE-ZING cold down there and sleeping on that futon is like sleeping on 2X4s. Literally. The futon is made of 2X4s.

Where was I again?

Oh yeah.

So, he won't sleep on his bed. This weekend we have decided to look for a replacement bed. In the meantime we are going to take the bed out of his room and put the mattress on the floor. I now have three days to convince my husband that we need to go to IKEA to look for the bunk beds, since it will be more cost effective (and savvy-er, if that is a word) and they will look nice. He hates IKEA, in case you are wondering. Hates it with a passion, and we STILL have the white-foil-MDF bed that he has had since a preteen, and he will not allow me to get rid of it, no matter how shabby the bed is! ACK!

Do not even get me started on the bathroom issues at school...

HALP!

HALP!

There is a grand conspiracy afoot. Someone told the weather people that Bugaboo is ending his two week break today and decided to forecast this yucky wet storm. And now there is SNOW on the ground, and a two-hour delay to boot. Do y'all have ANY idea how much this messes them up? Autie's don't like changes in their schedules!

To top it off, Bug Boy has literally not ceased using his mouth to make noise since the rooster crowed. I kid you not. If he isn't talking, he's singing. If he isn't singing, he's humming. If he isn't humming he is making sound effects from Star Wars with his mouth. AAAAAHHHHHHHH!!!!

And, I have a long-awaited doctor's appointment at 10, which I now have to bring Bug Boy to. And then hurry so I can drop him right off as soon as it is done, two hours late.

Out of the Mouths of Bug Boys

We had somewhat of a busy weekend. We did not really HAVE to do much but we decided that the only way to preserve our collective sanity was to keep the kids moving. After Soccer practice we headed home, did a quick House Blessing and picked up every room. We knew that Sunday meant massive rain so we did as much outside as we could to get ready for the deluge. If Lake Erie is going to grace us with its presence in our backyard we needed to pick up toys and doggie piles (because that is really naaaasty after the rain, I kid you not. Soupy Poopy, nothing like it!). I was exhausted after a few hours because of the continuing back pain so Darling took the boys out for a short time while I napped. Once I woke up I decided that the very thought of getting my pots and pans dirty was enough to send me into a coma and pulled my best puppy-dog-eyed routine and scored a dinner to Panera! w00t! So off we went.

Bug Boy was not a happy camper. He likes Panera but wanted desperately to zone out on Star Wars Lego (his current OCD/stim/PDD fix). He complained the entire five minute drive to Mommy's favorite cheapo dinner place that he, "Did not think Panera was very healthy and might make you fat!" Once we got there the tune was changed. Suddenly a grilled cheese kids meal was the best thing for a growing boy to eat since it has plenty of coliseum to help his broken arm (never mind that the arm has been healed for eleven months now). In fact, getting a drink from the fountain was the most fun he had, "all day, no, ALL WEEK!" The boys were nearly 3/4 of the way though their food before we even sat. I barely had one bite of my soup (surprise, POTATO!) before Bug Boy looked up from his sandwich, sighed, glanced around with a huge grin on his face and stated quite matter-of-factly that Panera was, "Quite a fancy place! This place is soooo pretty, mom! It's sooooo elegant!" Yup. That whopping $15 dinner for four. That is one classy place!

Since we were not quite finished punishing ourselves taking our children out to a public place (remember, any public outing with Bugaboo comes with ear-piercing shrieks, items we did not intend to buy that he smuggled out of the store and his random disappearing acts) we headed to the mall. On a Saturday Night. Forgetting that it was teeny-bopper social time and prom season...

It was worth it since I finally found a pair of black, heeled, low-cut boots to wear with jeans. But I digress...

After an hour of the most fun I've ever had in my life with the kids at the mall (yes, being facetious here. Does the sarcasm show?) Darling decided that since it was 8:30 he would go the shortest route home (just kidding! Of COURSE he went the loooooong way that he thinks is shorter. Never mind that I am the expert at back roads and he took all of the wrong ones!). Bug Boy reminded us that he was thirsty. And he was six. And Tyler is seven and has heelies. SEVEN. Got that? SEVEN, and he has heelies. Bug Boy also reminded us that he will be SEVEN in no less than eight months, so he will wait for his heelies. And Darling was kind enough to speak up and say that our rule was eight, at which time I gave him the hairy eyeball, which also came with miniature pointy daggers that I fantasized going into his eyeballs and face because I was so pissed about the whole heelies conversation (my child will never have a $70 pair of sneakers with wheels in them that he cannot wear to school or in public or ride on the sidewalk. Not to mention that we have a propensity for breaking bones in freak accidents in our family.)

Where was I? Oh yes. Long back roads, Bug Boy thirsty (Singing, "Da, Da, dadadaDAda" Star Wars theme), Mommy thinking about drinking (does that make me an alcoholic?) a glass a wine the moment the boys are asleep. So we did what any good parent would do, we headed to Wawa to get Bug Boy an iced tea at Nine pm. Mommy helped herself to a Decaf Mocha (homemade, half hot chocolate from the machine and half 6-hour-old decaf coffee from the pot). But they did not have the favorite brand of Iced Tea, so Bug Boy let us know he did not think he would enjoy that particular iced tea but would try. I asked him to be flexible, at which time he pointed out that he, "Would never be flexible. Because I am not flexible. I will NEVER be flexible, guys." We looked at each other with the sad realization that what he just told us was true...

After church on Saturday we thought about staying home for the whole day but once again decided we were too lazy to chase Bugaboo around for several hours so we took our aquarium membership and set out in the pouring rain. Thinking it would be abso-smurfly-crowded we prepared for massive crowds and screaming Bugaboo. SURPRISE! Not crowded! But flooded! Getting out of there without driving through rain water as high as our car took some maneuvering on Darling's part. And since he cannot find his way out of a paper bag and I was not talking to him (because he kept going left which made us go in a square, like, three times y'all! THREE! And he'd say, "I don't know which way to go!" And I'd say, " There's the river! We need to go back WEST because we live in that state over THERE!" And Bug Boy said, "You guys! Stop it! You are being rude and not using good manners! Apologize right NOW!") it took many extra minutes to find our way back home. By the time we got there we were all bushed but Bugaboo does not typically take naps, so I devised a plan to go walk around Tarzhay for the remainder of the afternoon. This was, of course, thwarted, when I dropped Darling off, ran in to use the loo and went back to the car to Bugaboo sawing logs.

So, Darling and I took a nap. Bug Boy got his electronics stim/fix in. Bugaboo took a nap (that now that I am thinking about, he may have needed because I am fairly certain there was some seizure activity with all of the jackasses attempting to take photos of fish at the aquarium. With flashes. Against five-inch-thick panes of glass. ). We woke up, had a decent dinner and decided to do Tarzhay and TJ's in the absolute pouring rain. Shopping with Darling is never as much fun because he wants to stick to the list and won't let me browse the sale racks and clearance areas. But Bug Boy helps derail that by remembering things that we need, like"" TAPE! And BATTERIES! And MATCH BOX CAR RAMPS WITH THE 360 DEGREE CAR SPINNER!!! AND I BROUGHT MY TEN DOLLARS! Look! Here it is in my pocket! How did it get in there?!?!"

Little things make Bug Boy happy, like the cool guy at TJ's who makes the food and balloon animals. "You are the BEST balloon animal guy ever, Walt!" And, "Excuse me! May I please have some stickers? I used good manners!" When we finally got home, trimmed the little Bug Boy hairs (M&Ms help tremendously to bribe certain Bugaboos from crying, even this anti-ABA girl can appreciate a little behavior mod!), trimmed their dirty nails, gave them baths after a four-day hiatus, fairly certain that the neighbors will report us to CYS for going four days without washing our filthy children, who actually get pimples and body odor, I kid you not.

They went to bed. I am elated.

Please join me in celebrating at 8:40 am Monday morning when I am FREE! FREE! FREE!! of children! WAHOOO!!!!!

One More Camp Idea

After discussing it briefly with Darling last evening, we have a few more tricks up our sleeves. I have to keep remembering there are a few free things I can sign Bug Boy up for this summer, like the library reading program. So, without further ado, here are our new scenarios:

-the local elementary school has a Y-affiliated camp that they run for $20 cheaper per week than the regular Y camp. It is on the school grounds, five minutes from our home, and they still go swimming, do the arts and crafts, etc. He will be inside for a portion of the day (lunch and arts and crafts) so that helps with the outside-all-day-thing and his heat intolerance issues. The only drawback is that it is from 9 to 5, and that is a looooong day for him.

-We have considered doing a week of the Future stars and then two weeks of the cheaper Y camp. Or a week of Future Stars and a week of nature camp. If we can find a combo it would be great. I have to talk to Darling a little further about this. My first choice (if money were no object) would be to send him to future starts, since it is a well-rounded program with a low staff/camper ratio (5 to 1 or 6 to 1 at worst!) and the Y camp is 10 to Y. They both offer a variety of activities and swimming, but the Y is once a week instead of daily.

-I think I have decided against Nature Camp altogether. It sounds AWESOME and I know he'd have fun, but I am worried about the bug/heat thing. Darling agrees.

I kind of wish that we could just send him to the specialized camp from last year. He had so much fun there and really blossomed, I just feel that he is going to be held back there. It means that instead of attending all summer he will only attend three or four weeks at best. He does not qualify for extended school year (which is a total crock, but they do not provide it for kids like him) so it has to be out of pocket. Grrr...

I am glad I do not even have to think about it for Bugaboo. He goes to year-round school!

UPDATE: It gets even better! I just found out that two local rec associations run summer camps for five weeks, half days and it is amazingly cheap. Like $150 for all five weeks. I think we are going to do that, and then sign Bug Boy up for one week additionally someplace else. That way we have him busy up until the beginning of August! WOOHOO!

One Down, One to Go

Friday I hit rock bottom. Not Bugaboo, ME. I HIT ROCK BOTTOM. I think if I wasn't feeling so crummy I could have handled it better. Well, except for when he poured the hot sauce all over the house. And I mean all over! Rug, couch, wood floor, linoleum, appliances, nothing was spared! But thanks for all of your words of encouragement. Today I am much better. Well, except for my back!

Bug Boy goes back to school today after a week-hiatus. We spent the week doing playgroups with his buddies from school, reading every book in his library, building forts and ramps all over the house and basically just talking. We talked about things he likes, things he does NOT like (red food, except for Salsa and ketchup) and how he does not like the fire whistle in S'more. In fact, he made sure he told me each and every time he heard it this week.

This morning he was quite excited to be going back. Bug Boy is certainly a routine-oriented child. He likes his sameness, he likes knowing what to expect. Despite my best efforts to give him a weekly and daily schedule this week (and the distraction of his cousin staying with us from Wednesday to Friday) he was still off. By Sunday he was anxious and short-tempered. When we began packing his lunch and picking out his clothing in preparation for today, he was suddenly a changed-child. He thrives in his school environment and routines. I am thinking harder about summer camp now.

Last year he attended a camp specifically for children on the spectrum. He was in a great group with boys just like him. He was relaxed and happy and had a wonderful time. He also attended all summer, for free.

This year we feel he has made plenty of progress, basically disqualifying him from the camp. We do not want him to back-track and so we want to send him to a typical camp for a few weeks. The problem is they all cost tons of money, anywhere from, $175 to $400 a week. Depending on where we decide to send him, he may get to go for one week or four weeks. The Y camp is too sports oriented and they spend too much time outside. Since Bug Boy has exercise intolerance and heat/sweat issues (part of the metabolic stuff) I do not want him outside in the blazing sun for six hours a day. It could cause him to seize or to dehydrate very quickly. We found a neat camp run at the college for $250-$275 a week (Future Stars, I kinda like the way it sounds) and they have a schedule almost like school. They do academics, arts and crafts, sports, swimming, computers, drama, you name it. This is my favorite of all of the camps so far and we could send him for two weeks. A well-rounded program right in town where he may have school friends attending. The last camp we are considering is modestly priced at $160 a week. We could afford to send him for 3 weeks. It is a Nature Camp run at the arboretum. He would be under nature's canopy learning about bugs, trees, plants, creek life and weather. He would be running around the woods with his school buddy (which is how I found out about it). But he would also be eaten alive by bugs, and he is allergic to mosquitoes. I'd have to spray him with chemicals everyday. He would also be outside, although it may be cooler there since he'd be in a wooded area. They do not do swimming there but they do get to go to a creekside swimming hole and play in sprinklers each day.

He will go to camp but Darling and I must decide in the next two weeks. I hate being pressured! At least I do not even have to consider what to do with Bugaboo this year. He has year-round school! Easy decision!

Painfully Obvious

While we were at my favorite red-dot-store-that-rhymes-with-Barget this morning, I ventured over to the pharmacy to get the next month's supply of Bugaboo's meds. They know me by name and never have to ask. I merely show up and they grab my stuff. That is how often I am there!

Anywho, while there I saw a mom pushing her little guy around in a special stroller. He was in his footy pjs (like my kids!) and had some physical challenges. We chatted a bit while we waited. Her little boys smiled and laughed. He just couldn't move.

I am guessing he was two-years-old but because of his physical limitations he could be small for his age. But as we left (and ran into them again at the elevator) I have to admit I was nearly in tears just thinking about that little boy. I cannot even imagine what his parents have gone through to this point. He has a feeding tube and mickey and has sensors to make sure he is breathing and his heart keeps beating. He cannot independently move out of that chair. His every need is taken care of by his mother and nurse (who was with them). She had a cart full of Easter stuff, my guess is that she has other children. Four, from the amount of goodies in her cart!

Why did this affect me so? Her child's condition is fairly obvious. On first sight most people could guess that he had Cerebral Palsy. He may even have been a preemie, due to his small size. I really do not know. Most people know what to expect with a child with CP. Often their brains are intact (average to mildly below average intelligence ) and their bodies cannot move. Sometimes it is more severe. A child with Down's Syndrome has obvious physical features. Most people know that they have developmental delays and often speech issues. But a child with Autism? Most times they look like everyone else. I do not know if this is a blessing or a curse.

At least with my child no one will have a preconceived notion of what to expect from him. I know that this is debatable, since each child with a disability is different, even within their own diagnoses. People are usually shocked to find out that my children have issues, on first sight. Once they observe their behavior I usually get a knowing glance (the, "It's-ok, I-have-a disabled-child, too!" look, like this morning) or a pity glance (the "Wow! Sucks-to-be-you!") or better still, the "Look-of-horror-and-disgust-combined-with-embarrassment-and-wanting-to-shrink-away-and get-their-child-out-of-there-before-they-catch-something-contagious" look. Those of you with children with "issues" (because I hate the word disability, really) know what I am talking about.

The thing is that even though people aren't going to judge my children right off the bat like some children they also will not be given any allowances. People will assume (and they do!) that they are normal and just spoiled. Or give me dirty looks in the grocery when Bugaboo is shrieking, buzzing, flapping, stimming, etc. I even get little old lady (and some young ladies) scolding me for not using the belt, which he has taken off about fifty times. My only defense is to repeat the grocery mantra, "You need to sit! Sit down! That is unsafe! Sit in the cart! Do not climb out!" and I still have my hands on him the ENTIRE TIME, yet he manages to jump out while I am checking eggs and run laps around the store. The people at TJs know all about us, as they do at the little co-op in town (which isn't truly a co-op, but I digress). I felt compelled to tell them so they'd be a little more understanding with us and they are VERY kind. They even help us out.

With everything in my life, their disbilities are a mixed blessing. They have taught me lessons I never knew I needed (or wanted) to learn. At the same time, I am almost jealous of the woman with the child who could not move (those of you who know me personally know why!) because of what I go through with Bugaboo. Then I feel like an ungrateful wretch because I have this perfectly healthy, happy child who may have neurological differences but is a a joy to most people. I never get tired of hearing from perfect strangers (and friends and family) how gorgeous my little boy is. I never tire of people asking me about Bug Boy's little genetic hair display (think: Calico kitty!).

No parent of a child with issues has it easy. No parent has it easy. Parenting is a difficult job to begin with . Add in the stress of dealing with a child with special needs and you have recipe for disaster. No wonder the divorce rate is so high among people with children with special needs! The paperwork, therapies, denial of services, meetings, people coming and going, schedule, appointments, it never stops! It is a full-time job in itself, so I appreciate being able to stay home and dedicate myself to it. After twelve hours of Bugaboo I feel like I have been doing hard labor.

As for the word "disabled," I hate it because it is so negative and condescending. It focuses on what your child CANNOT do instead of what they CAN do. Do not misunderstand me, I am not one of the "So-PC-It-Mkes-Me-Want-To-Puke" types. I just wish folks would stop being so hung up on a bunch or words and concentrate on the whole child! Concentrate on the blessings! Concentrate on the love!

Speaking of the love, he has been helping me type all along. Nothing like having "help." I apologize for the lack of proofreading and proper spelling and grammar! I just wanted to post it as quickly as I could before he deleted it all!

Rite of Passage

It is part of life. The thing that defines your years when you are five or six. It has finally happened in our house and I feel a little sad because of it. After months of waiting the inevitable occurred.

Bug Boy lost his first tooth.

Since November (when the dentist told us that it would be falling out before Christmas) we have had a loose tooth. He allowed us to look at it, wiggle it, brush it to no avail. The thing would not budge. Meanwhile, every child in his class (and I mean, EVERY CHILD) and the girls that I watch after school lost teeth. Little Miss has lost FIVE since September, the sixth one is loose now. Bug Boy sat and waited patiently. He had us pack him apples and carrot sticks because, you know, they make loose teeth come out. He wanted hard, crunchy food because, you know, they make loose teeth come out. And Coliseum. He wanted lots and lots of coliseum because coliseum is good for your bones and it helps new teeth grow, which will help the old one fall out. Because, you know, ice cream has coliseum!

Last night, after indoor soccer, we did the "tooth check" that we do every night after dinner. Darling remarked that the time had come to try and pull it out. Bug Boy was having NONE of that. He said, "Dad! Just give me an apple! Cut up! WITH PEANUT BUTTER! CRUNCHY!" Darling sighed and obliged. As I cleaned up dishes and packed lunches, Bug Boy chatted with us (or made speeches to us, as he is inclined to do) about his day, his life, his Legos, his Star Wars, etc. I turned to look at him and noticed something red on his shirt and pants. Then he said, "Ewww! There is something in my peanut butter that I can't chew!" and spit it out on the floor. It was....DUN DUN DUN!!!!! His tooth!!!

He had blood running down his chin but he was sooooo excited! He and Darling ran to the mirror and checked it out, then dug out the letter they wrote a month ago to the tooth fairy. I tried to head Darling off before he mentioned tooth fairy (since Bug Boy had never heard of it and I do not do fairies and bunnies and santas) but it was too late. We are now committed to a few years of quarters under the pillow. Or half dollars, since that is what we had on hand to put in the envelope under the bed. Here is what Bug Boy wrote:

THIS IS PAGE 1
Dear Tooth Fairy. My name is Bug Boy. I am SIX YEARS OLD.
THIS IS PAGE 2
I live at 123 Main Street in Little Town, PA. Thank you. LOVE BUG BOY.

I think Darling was more excited than Bug Boy. He really gets into all of this cutesie stuff, I am the meany that would rather skip the events and parties. Anywho, Darling had tears in his eyes, I kid you not. He has stated on many occasions that he is happy and having fun. Of course, he never brings that up (for some strange reason) when Bugaboo is turning the sink on all over the kitchen floor, takes off his diaper and urinates all over his room or runs outside at 5am and is up to his knees in mud. Hmmmm...This is the same man that while I was IN LABOR ON THE WAY TO THE BIRTH CENTER, for the SECOND TIME, he was mentioning that when we have the NEXT ONE, we should do X, Y, Z and I wanted to take his bottom lip and pull it up over his head and then kick him repeatedly in the arse.

Ok then.

So the tooth is out, safely tucked away in my room. I am keeping it for a little while, since it has a ton of his DNA in there (plenty of tooth pulp, I read that it is useful in a safe kit with your kids' prints and such). I do not think I will keep EVERY TOOTH as my mother did. She still has each and every envelope, with teeth and fairy request, in her jewelry box in her room. I found them a few years ago when helping her clean and had a good laugh at some of the things my siblings and I wrote. I was Ms. Moneybags (please leave me $1 this time since I am ten. Thank you.) and my brother was very concise (Thanks, love Jay). I know she kept them because she could not stand to part with them or their messages. And with seven children, that is quite a large amount of baby teeth!

Yes, I feel sad in a way. The gap-toothed smile is on its way. I KNEW I should have made that appointment for our family portrait sooner! ACK!

Surprise!

For those of you who have been to my house, you understand about the "window" between the boys' rooms. For those of you who haven't, allow me to explain.

The previous owners had three teen aged boys and a television in every room. The rooms are not huge, so in an attempt to save space in the rooms their boys came up with a clever (but horribly ugly and white-trashy) solution. The decided to cut a hole in the wall of what is now Bug Boy's room into the closet of what is now Bugaboo's room. That way, the boy who used to live in Bug Boy's room could be in bed watching television, they would put it on the top shelf of Bugaboo's closet facing into Bug Boy's room.

Is that confusing? Did I explain it ok? Hope so.

Ok, back to the story: The hole is still there. Bugaboo used to be in Bug Boy's room with the cutout in his wall. We did not like him in that room because his window is directly over a very long drop to the ground and we felt it was dangerous, not to mention his room was further from ours. So a few months ago we switched Bug Boy and Bugaboo, so Bug Boy is now in the room with the hole in the wall and Bugaboo is in the room with the hole in the closet. After a few weeks in that room Bugaboo began climbing onto his dresser, breaking the baby locks and pulling the drawers out like stairs. We bought straps to bolt his dresser to the wall but decided that it would be safer just to put the dresser in the closet. It is a standard baby dresser, longer than it is tall, cut out for the changing area that we never used, cheesy wood (don't ever by a crib-to-college set, you never want the set after toddlers are done with it unless you paid $$$ for a solid oak or well made set) and stuff that I want to get rid of. Anywho, guess what? Bugaboo began climbing on the dresser to get to his fish lamp, which we had placed on the closet shelf so that he would stop ripping the plug out of the wall. We had it on the shelf and ran the cord through the hole and into Bug Boy's room to plug in. Once he began climbing up there we contemplated removing the dresser altogether and eventually moved the fish lamp out of his room, since he wouldn't go to sleep with the light on. We left the dresser intact.

At some point we knew we'd get around to drywalling the hole in since it is unsightly and strange and has outlived its usefulness. We have yet to paint (or finish with joint compound, for that matter) and knew we'd get to it when the drywall phase was being worked on, which we hope to do this spring. It just has not been a priority, like floods in our backyard and failing appliances. You know, real life got in the way in the past eighteen months. It never occurred to us that the hole would need to be boarded up SOONER rather than LATER.

We are really good at procrastinating these days. After eight years of fixing up a one hundred-year-old house, we are tired of home improvement.

We knew Bugaboo would climb up into the hole and watch Bug Boy and laugh at him, and Bug Boy would throw things at Bugaboo to get him down. We kept saying, "We need to do this next week!" Tonight became next week!

You know what happened already, don't you???? So I can stop now, 'cause you already know.

Just kidding.

After putting the boys to bed this evening we settled on the couch and I almost immediately began dozing. My back is still hurting and I am exhausted. A few minutes after they were in bed we heard some loud noises, Bug Boy's door opening and many footsteps approaching us. Bug Boy burst into the Family room and blurted out, "Mom! Dad! We have a problem!"

Bugaboo was right behind him. Completely Nekkid. No footies. No diaper. Nothing.

He jumped up and down and looked absolutely pleased as punch. Quite proud of himself, really. We did our best to stifle the hysterics we were feeling and through the hands clapped over our mouths (and tears sliding down our face in fits of laughter) we told the kids we were going back upstairs. We were actually afraid of what we would find, but thank goodness he had already produced a bowel movement today. His room was, however, covered in little puddles. Yup, his bed, two spots on the floor, his dresser and half of the clothes hanging in his closet were covered with pee. Bug Boy even helped us strip and remake the bed, clean up the pee and move the dresser out of his closet. They are now back in bed and (we hope) asleep.

Bugaboo did undress himself last evening and I heard him crying in frustration so I went to check on him. It turns out that he had stripped himself (a regular thing around here, nekkid Bugaboo at all hours of the day) and was attempting to put a diaper on himself and cried because he couldn't quite get it right. Poor kid!

Word to the wise: If you are ever faced with the decision to purchase a home that may or may not have a hole cut into the wall (though artfully framed in with trim) and have active boys with advanced motor skills or a Harry-Houdini-monkey-of-a-son or a child with autism who likes to strip nekkid and pee and climb through windows, do not buy the house. Or at least have the foresight and initiative to board up the hole. Stop procrastinating already! DO IT!

Did I Make a Mistake?

Darling typically does not accompany us on appointments to duPont. Nope, I take all the time off to go to these things since my schedule (the stay-at-home-mom-who-does-daycare-schedule) is more flexible. Once in a while, if there is a procedure or copious quantities of blood work I ask someone to help me out. Mostly, I go it alone all day.

This Friday we have our second annual appointment with the developmental pediatrician. Bugaboo went a few months back because we were having terrible issues. The hyperactivity and feeding issues had reached an all-time high and we were desperate. We were referred to several specialists, received great feedback on the feeding issues, changed his school program and now things are much improved for him.

Since we already have a diagnosis for both boys (which helps us receive a long list of necessary services) this trip is merely a formality. Its purpose is really just to follow up and see which services are still necessary and which services we could live without. I asked Darling to accompany us this time because it is a two-to-three-hour appointment for EACH CHILD, so it is nearly impossible for me to be able to focus on the doctor and her staff with one child at a time. It is chaotic at best. Therefore, when I asked Darling if he wanted to go he agreed. I know he wants to hear what she has to say.

I explained to Darling that we needed to make sure we were on the same page on several issues. One was Bug Boy, his diagnosis and his difficulties in school. I reread his evaluation from the school and shared the information from Bug Boy's teachers that explain his control-freaky behavior, difficulty switching tasks, eloping from the room to see what is in the hall (nosey child!), his rigidness with schedules and rules and his lack of empathy with other students. Darling questioned whether or not he still needed speech and occupational therapy. When I read the scores of the tests to him (these tests do NOT lie, although others do!) he stated, "Oh. Ok." I still do not think he gets it, no matter how many things I e-mail to him, print out for him, read to him, etc. He does not think Bug Boy has any issues, just a "social and emotional delay." Uh, honey? A twenty-five percent delay in one or more areas constitutes a developmental delay. In our case, Pervasive Developmental Delay. They would have diagnosed him with Asperger's Syndrome, had it not been for the fact that he did not utter a syllable until the age of two-and-a-half. And then he never babbled, he spoke in clear, loooooong sentences. He sounded like a little professor. Never pointed, never waved bye-bye.

But, from what I understand from Darling's mother, he spoke for the first time at the same age, never played with anyone, and basically did not talk for the next ten years. When he first saw the criteria list he breathed a sigh of relief and said, "Wow. Maybe that is what is wrong with me! I meet all of this criteria!" No kidding! My sister and I have suspected it for years.

Anywho, I do not know if we are on the same page about this. I mean, he seems to agree, he does not think I am creating a mountain out of a molehill and he agrees that Bug Boy has the issues he has. I just wonder if we are going to get in there and he is going to refute everything I say. That is not his normal M.O, so I think if we agree on those points it will be fine. Afterall, I really just need this appointment as backup to keep services, since the speech teacher is hell-bent on making sure she tells me that everything Bug Boy does is "fine" and "good" but doesn't quantify anything. His classroom teachers tell me a totally different story!

As for Bugaboo, we agree on the main issues. Frustration about not being able to communicate. Sleep issues. Hyperactivity. Danger in the environment. These are your typical Autism-related issues. These are issues we have been dealing with for a while. Now, things HAVE improved with him. Since the diagnosis of his stomach issues and seizures we have had him growing by leaps and bounds. Once he began eating better he grew THREE INCHES in one year and gained almost six pounds! He does sleep better now than he ever has. He is even eloping less. The TSS at school and home have helped us improved things and his new school program works much better for him. But there is still this freight-train-tornadic-activity-whirling-dervish-thing that he does. You know, spinning, running as fast as he can, climbing, jumping, opening and closing things, and his newest behavior, pouring out coffee mugs and smashing them. Oh wait, there's more! He now also LOVES getting into the pantry closet or medicine closet (both locked, but someone inevitably leaves them open!) and finding a glass bottle (like beer from the fridge) and shaking it and opening it and FIZZZZZ!!! All over the place. This is a fun thing for mommy to clean up.

So, we are mostly on the same page with Bugaboo. Darling wants to try hyperactivity medication but I do not. We shall see what she recommends. I am not so keen on it, especially since he is already taking medications for seizures, night terrors and stomach problems. In one respect I wonder if I am giving him a fighting chance to calm down and find out what he is REALLY like? What if that is the thing that helps him the most? I still do not know how I feel about it. We know what she will tell us about Bugaboo. We already know he has autism.

Typically,when more than one child in a family has autism or developmental delays they look for a genetic component. Since several boys in our family have developmental issues and they also existed in my brothers and my husband, it is safe to say there is something genetic going on.
We've had common genetic tests (like Fragile X, which was negative) and so far nothing has popped up. The only thing we are concerned about this point is finding out about the metabolic issues they have, since the have physical side-effects from it. I am not so hung up on finding out the WHY part, just the WHAT-CAN-WE-DO-ABOUT-IT part.

So, I am a little apprehensive about bring Darling to the appointment but I am looking forward to him participating. I value his feedback and his opinions even if they are different from my own. I know that his only concern is the boys and what is best for them. I also know that he wants so much for them to succeed and reach their potentials. We just need to find out how best to help them reach it!

ADHD Brains and how they work

Ok, wanna know how an ADHD brain works? Here is a portion of our conversation (well, Bug Boy's soliloquy, since he doesn't actually have back and forth conversations) on the way to duPont for our appointments yesterday:

Bug Boy: Mom?

Me: yes?

Bug Boy: Mom? I don't want Daddy to sell the jeep. I like riding in the jeep in the summer. I like it when we take the top off and go and get Ice Cream. Ice Cream has coliseum in it and that is good for my broken arm*. I like riding in the jeep. Hey! Look! A bird's nest! Do you think it's a bird? Or do you think it's a squirrel? Did you know they don't have squirrels in Australia? Shadow loves chasing squirrels. She's never caught one. Nope, never. Shadow needs her teeth cleaned. Her breath is really bad. Know what? Mom? Know what? I brush my teeth everyday and I do not have bad breath. Shadow does. Look! Another nest! Know what? I don't want to get blood work today. Ok? I don't have to get it, right? No blood work? We're going to go to the doctor to get my mole checked. I don't want them to take it off. It will hurt and they will have to give needles and blood work. I don't like that. I want to keep my mole. Can we get a kid's meal when we get there?

Me: The cafeteria won't be open until 11 for lunch...

Bug Boy: I want to get chicken nuggets and french fries. Not cheese, though. Nope. Can't have dairy. And I don't like their cheese. I'll just get ketchup. Can we stop at Wawa and get a soft pretzel?

And people wonder why my head is spinning at the end of the day...


*Bug Boy's arm has been healed for about seven months now,although he still refers to it as broken. We are selling our '84 CJ-7 garage-kept Sunday driving car and Bug Boy cannot comprehend why. It was the mantra of the day, "I do not want to sell the jeep!"


UPDATE: Perky wants to know if everyone's brains are supposed to work like this. Well, yes and know. It is one thing to be an enthusiastic child who wants to point out everything he knows in life. It is another thing altogether when he cannot concentrate, has difficulty relating things (even with the incessant chatter, yes) and when this type of brain activity gets in the way of normal day-to-day functioning. Ooops, said that N-word again. Normal. I mean TYPICAL, mmmkay? So when it gets in the way of functioning TYPICALLY, like being able to sit and read a book, being able to attend to a teacher's instructions, being able to control your body from doing certain things, then yes, it is a problem. But, like i said, it is the least of my concern. There are so many things going on with these kids that I just cannot think about it right now. So, if it is getting in the way of functioning typically, you cannot get organized, you feel overwhelmed because you get nothing done, you cannot carry on a conversation because you are constantly distracted, then yes, get it checked out.

Genetics

For those of you who need to know, I am recovering from the recent stomach flu, I still cannot eat and have bad stomach cramps. I am also wiped out physically and want to stay in bed all day. The boys have a TWO HOUR DELAY! ACK! HELP ME!!! Ok, it is out of my system. I will survive...

Yesterday we saw the Genetics doctor who specializes in metabolic disorders. She took one look at Bug Boy (his hair, his mole, his stature, his hand and foot shape) and had plenty to say. There are some things they are going to look at, due to a number of physical genetic flags, but the gist is that they still really do not know for sure. The boys most likely have a metabolic disorder that involves how they metabolize and store (or lack thereof) certain things. They have the most trouble with sugars and fats, lactose and fructose being two of the culprits.

This is not typically a fatal thing. There are types of these disorders that children do not survive due to failure to thrive and genetic defects. Bugaboo and Bug Boy have always been 75% and up for weight. This is clearly not their issue. But they do have a tendency to break down fatty acids and sugars and instead of storing them, they float around and end up being soaked into places they should not. Like their brains and muscles, who have no use for them but cannot get rid of them. Therefore, the boys have side effects: muscles cramping (too much lactic acid); headaches and seizures (from storage of things that do not belong in the brain); frequent urination and constant thirst (from the blood sugar imbalance, most likely hypoglycemia); problems regulating body temperature and profuse sweating (and the body odor and pimples, yes pimples! That go along with it.). The biggest thing is that Bug Boy (and now Bugaboo is developing it) is the muscle cramping. My kids cannot tolerate exercise. It may be why their weight is 50-75% but they are still healthy. The doc feels that they'd be horribly skinny if they didn't have the intolerance problem. Basically the boys muscles will cramp up after 1/2 a block of walking or riding on a flat surface. They simply cannot continue. It hurts! This is NOT normal for a little boy.

Long term the prognosis is good. The good news is that they are catching these things earlier, as they typically do not manifest until preteen to teenage years and beyond. By then the majority of the treatments are no good and they go on to develop kidney and liver problems, hypoglycemia and diabetes, hypertension and heart muscle problems, the list goes on. With the boys being so young there is much they can do. Some treatment may involve a monthly IV treatment, similar to what they do for rheumatoid arthritis. Some treatments use medications, although the boys most likely will not respond.

The doctor knows Bug Boy has this. She is not sure about Bugaboo because he is nonverbal and cannot relate some of the symptoms. At the moment we are assuming he has it and are proceeding with the tests to diagnose it. Since it is usually developed when children are older, it is possible that he will develop it full-blown by the time he is high school age.

The perplexing thing is that children with these conditions, while they develop delays due to illness, RARELY, if ever, have autism at the same time. This is not the first doctor who has told me that they do not believe that Bugaboo has autism. Just about every specialist has. But I am convinced he does. Am I a bad mommy for thinking that? I mean, I believe that the name doesn't matter as much as the therapy. But the name is necessary right now in order to get the therapy. The therapy is helping. If it ain't broke, don't fix it. We see the Developmental pediatrician again in March. We shall see. She already thinks that ADHD combined with a developmental delay due to chronic ear infections and sensory disorder is his main problem. He just exhibits these other tendencies. She also thinks he has aphasia, an inability to get your brain and mouth to coordinate in order to talk. But if that were true, they feel he'd be able to sign! He hasn't shown much interest in learning.

The best part of all of this? Late talkers and similar developmental delays run in the family on both sides. The genetic disorder could be passed on through the mother so there is a very good chance that some of my nephews (one in particular) has it. The metabolic issue is most certainly from Darling, or he has it and I am a carrier. The doctor showed me the nifty chart she made explaining my family tree and who has what, and where things most likely come from. Rather fascinating, this genetics stuff.

I Love His Perception of Things...

Bug Boy has an interesting idea. He'd like to go to first grade. NOW.

When we asked him last evening why he would like to go to first grade, NOW, he replied:

"Because you can buy lunch in first grade!"

DUH! We are supposed to KNOW that!

So this morning I asked him about it again. I said, "You know, they may not always have things for lunch that you will like to eat. Some days they might have red food. Some days it might be sandwiches. You probably will not buy lunch everyday in first grade."

He studied my face for a moment and calmly stated, "Well, they have chocolate popsicles everyday!"

Aha! Now we are getting to the bottom of it!

Just had to share

Bug Boy was just putting on his coat and hat. The bus was due in five minutes and he was being rather pokey. He said, "Mom! I'll get my own coat and mint-ins." So of course I said, "Can you say mittens again?" And he said, "Mi-ins." So I said, "Try again! Mit-tins" And he looked at me, his head to the side, a naughty smile on his face and said, "GLOVES!"

Cheeky little monkey.

I've been awake since FIVE AM!!!!

No worries about getting up on time this morning, Bug Boy was kind enough to wake up at five. He has had a wicked bout of ear infections the past week and was in tremendous pain. Last night when we tucked him in we found him sound asleep, on the floor, in his underwear, snoring away. He also had a blanket wrapped around the heater in his room (hmmmm, he was hot?).

Bug Boy has not had an ear infection in about four months. Before that it was eight months. So, two in one year was not too shabby, considering this poor child has had three sets of ear tubes and one operation to correct scarring on his ear drum. Bugaboo has also had three sets so far. I expected that Bug Boy was growing out of them, but now if he gets one more they will refer me back to the ENT.

The main culprits with the boys are allergies and anatomy. There really is nothing I can do about their anatomy and we have little control over their allergies. Neither boy can be on allergy medication because of the fear it will make them too drowsy or interact with the seizure medications. We just tough it out, use saline and hope for the best. Because of the unseasonably warm temperatures we have had their poor little noses have been suffering. I think Bug Boy's nasal passages have just decided they have had enough and are currently exiling the inflammation and fluid to the ear canals.

He woke up with so much pain this morning (still in his undies) and climbed in with us while I massaged his ears and sinuses. He has not cuddled with me in MONTHS, so despite the fact that I was bleary-eyed and wishing he would doze off, I cherished the moment we had. His little (BIG!) feet tucked in between my knees, his little hand holding mine and his head tucked into the space between my head and my shoulder. I have never felt so close to him! My boys just are not the huggy-kissy-snuggly-type. They like their space. It makes it that much sweeter when they want to be cuddled or held.

I imagine Bugaboo will be ill some time this weekend. I am amazed that he has only had a handful of colds so far this season but I am bracing myself for the onslaught of viruses. He generally gets one this time of year and it lasts for months, due to his immune system difficulties. I have been pumping him full of vitamins and protein in an attempt to perk him up and hopefully make him stronger. Let's just say the kids like Bugaboo do not have the most stellar hygiene skills!

Bug Boy must be feeling better. He has retreated to the basement and Darling and I have been able to hear him talking NON-STOP for the past hour. To himself. Or the cars, I do not know which...

Just had to share

I was upstairs folding for baskets of laundry this morning (stripped all beds this weekend plus our daily laundry pile, two days that I did not put away!). Suddenly I heard this blood-curdling scream:

"MoooooooooooooooooommmmmmM!!!!! Moooooooooommmmmmmm!!!!!! MOOOOOOOMMMMMMMMMMM!!!!!"

I dropped what I was doing, ran as fast as I could down the stairs, expecting Bug Boy to be pinned under something heavy or hurt, by the terrified sound of his voice. As I nearly wiped out on the kitchen linoleum, I glanced around the Family Room and called him, "Bug Boy!! Where are you?" I did not see him.

He was behind the sofa, in his "clubhouse" playing with his Leapster. He looked up at me and asked, rather innocently, "Mom? Is seventy-five and seventy-five equal to one hundred fifty?"

He looked at me and waited for my reply. Through clenched teeth I told him, "Yes, it is. And next time you need mommy, please do not scream like that. If you need me (unless you are in trouble or hurt, please use a quieter voice and come to find me. Do not sit down here screaming. Do you understand?"

He nodded and went back to his game.

Grrrr....

Baby Bugs do funny things

Today I went to Bug Boy's class to help with the Gingerbread House building. They made these cute little graham cracker houses and used canned icing and fruit loops and some candy to decorate them. They turned out sooooo cute and Bug Boy did a great, thorough job. Not his usual, "Two pieces and I am done" gingerbread house. He made a walkway, a chimney, windows, doors, trees, light posts (so the car can see!) you name it. And I meant to take a picture of it. If Bugaboo and Shad Roe didn't eat it (well, Bugaboo ate it while we decorated the tree, Shad Roe ate what he dropped) I would have posted it. No seriously! The Kid Who Won't Eat now has a chocolate fixation. He took one look at the M&Ms, chocolate chips and pretzels and went to town. It WAS awfully quiet in the family room while the rest of us were in the living room working on the tree!

I will, however, take a picture of our first fake Christmas Tree. Bug Boy insisted on hanging chili pepper lights on it so for the first year EVER I am not putting my usual 800 white lights on it. We also decided to skip the glass ornaments for a very good reason: Bugaboo. Our tree was knocked over three times last year, the last time it fell on him and resulted in the breaking of antique glass ornaments. Those are put away for a few years! We knew it was the right decision (not taking them out, I mean) because as soon as the tree was up, Bugaboo was stimming with the branches. Oh Lord, help me! Shadow took up her usual spot under the tree, so as we trimmed it (and mommy tripped over her about a thousand times, there are still choice words hanging in a dark rain cloud over my head.) we had to climb over her.

To create the mood a little we dimmed the lights in the house, put on Christmas music (digital cable has not one, but TWO Christmas music channels!) and giggled and talked about every ornament. We showed Bug Boy the ornaments Mommy and Daddy made as kids and told him where we obtained many of them. Well, the ones I can remember! When we were finished we admired it and returned to the Family Room, where I tried to get the boys ready for bed. Darling had to call the help desk at work (nothing like upgrading your work laptop over the phone while your kids climb over you and say,"Who farted?") and I changed Bugaboo and doled out meds. Thinking it would be easier for Darling, I turned off the music. Bugaboo came RUNNING from the other room and turned it on! So I flipped to another music channel! He begged for it to be turned back! He loves to have music on so I guess I should not be surprised. At one point we waited until he was playing with Darling on the couch, tickling and rough-housing, and then I quietly lowered the music. He stopped what he was doing and ran over to the tv and turned it back up! For a kid who doesn't seem to pay attention to much, it just goes to show you that he is ALWAYS paying attention.

Bug Boy spent the rest of his evening attempting to persuade us to let him eat the rest of the gingerbread house. His arguments are becoming more and more logical. He almost had me convinced that, "The candy has milk, right, Mom? And MILK CHOCOLATE has milk in it. And milk has coliseum in it. And coliseum is good for your bones. Since I broke my arm (seven months ago) the coliseum will be good for it. Therefore, (yes, he says therefore) candy is good for me. See, Mom? See? Can I, Mom?"

It is so difficult to discipline them when they do certain things, especially when they are so flippin' cute.

Nothing to Worry About

This morning (after coffee with some friends) I drove to a medical office nearby to pick up records for Bug Boy. Tomorrow we have to see a Cardiologist, per the request of the Neurologist. It seems that Bug Boy's blood work came back with elevated levels of lactic acid. This does not surprise me, he has had muscle cramping problems for a long time. At night his legs are in so much pain he can barely stand. He is constantly thirsty and must drink quite a bit. Since starting a muscle relaxant and seizure meds he sleeps much better and the muscle cramps have all but ceased. There is a lingering problem, however.

Bug Boy is an active boy. He is your typical run-around-the-yard-until-my-cheeks-are-red-and-I-cannot-breathe-any-longer type of kid. But the problem is that he has less and less energy to do the typical things. He can only walk part of the way around the block or ride his bike for a very short distance without getting tired. When playing on the playground or out in the backyard he gets very tired and has to stop after about fifteen minutes. Because of the muscle spasms and because of the elevated blood levels we have been asked to see a cardiologist. Apparently this exhaustion (and the dark circles under his eyes) can be heart related. Because, after all, we need to see yet ANOTHER specialist.

I am sorta not worried. We had a heart work up when he was eighteen months old that showed he was healthy but his blood has a little trouble keeping him warm when it is supposed to and he is sensitive to extremes of heat and cold. We have to be careful in the summer not to let him get overheated, air conditioning is a must. He sweats more than your average kid, again a result of the lactic acid. It also causes problems with digesting the -oses, you know, glucose, fructose, lactose, etc. His heart works fine (at least it did four years ago). But they are concerned with the tiredness, which may or may not be a result of sleep cycle seizures. Now that he is on seizure meds they still feel it should have "gone away" by now. So, tomorrow we will spend three hours at duPont, getting an EKG, ultrasound, etc. They will tell me he is fine and yet the problem will persist. Then they want to do a gosh-awful procedure called a muscle biopsy to rule out a few other things.

Sounds so minor and yet it is all complicated. Something metabolic is going on with Bug Boy and they also feel Bugaboo may have it. Since Bug Boy is older they are choosing to go through all of this first with him and then will test Bugaboo for whatever they find. We have no way of knowing how bad Bugaboo's pain or intolerance is because he cannot say, "Hey, guys! My calves really hurt! Hey! My back is having spasms!" It is so difficult to figure it all out with him.

Wish us luck. Pray for us. I do not need another thing on my plate. And this is supposed to be our last appointment for four months!

IEPs, round two

Yesterday I received all of the documentation regarding Bug Boy's IEP. There were two big, fat envelopes in the mail from the school district and I knew exactly what they were. One is an invite (because you can't go to the IEP without an invite, apparently. Even though it is your kid.) to the IEP that should be signed and returned so they legally have proof you are going to be there. The other is an evaluation report on his present levels of performance. The district did OT, PT and speech testing in the summer and then recently did their classroom observations and psychological testing. They have been providing Speech and OT based on his IEP from Early Intervention until his school-aged IEP occurs.
I had no problems with anything until they did the psychological testing. When I asked for a Multi-Disciplinary Evaluation I didn't realize that they would also do Intelligence Testing. I could have read the fine print (and I have learned to do that in the future) because it was spelled out in black and white, plain as day. Last week the school psychologist called to give me the results. She was astounded by the results but I am not surprised. They are classifying him as "gifted."
Now, I know he is intelligent. He is quirky and has a knack for memorizing EVERYTHING. When we used to spell things when he was two so that he couldn't understand them he'd tell us the word we were spelling. And when he was about that age he'd point to street signs and tell us what they said. I am not bragging, anyone that knows him could tell you that he is a brainy and peculiar child. It doesn't surprise me that they call him gifted, Darling and I were both in gifted programs as children.
My problem is that all of the sudden they want to give me all of this information about the gifted program (that supposedly doesn't start until third grade). They have a first grade classroom that they call first/second because the children work on higher level curriculum and enrichment. It is a neat program. And in Kindergarten they will do enrichment with the children who qualify. Bug Boy loves learning and soaks up everything he hears like a sponge. I just want to make sure we foster that so that when he is a teenager he doesn't play hooky and snooze through classes due to sheer boredom.
I do not want to put extra pressure on him since it is difficult for him to function in the class anyway. According to the evaluation report he is bothered by the noises other children make, he constantly reminds them of the rules, tells other kids not to bump or touch him or tells them they are "annoying" him. Not the way to make friends, you know? And, during the test the examiner had to remind him several times to stay on task. During the timed portion he chatted so freely that he ran out of time. And didn't care. He was too busy telling the examiner that he knows, "Lots of stuff. Wanna hear some of the stuff I know?"
My biggest fear is that they are going to set him up in this program and forget his needs as a child with PDD. He will still need to be followed and work on social skills and pragmatics. He will also need to have sensory based instruction until he learns how to deal with environmental stimuli. Occupational Therapy is an absolute must. I have to make sure I am forceful and remind them that although he is "smart" he still needs support for his social and emotional delays.
Silly thing to vent over, I know. But I just want him to be normal. I don't want him to stick out for any reason. I am beginning to realize that it may not happen that way!

Funny Joke

Bug Boy told us a joke today that had us in hysterical fits of laughter. I mean, talk about tears in our eyes! Do you wanna know the joke? Do ya? Huh? Huh? Ok, hope I can do it justice. Here it goes:

Why did the chicken cross the road?

'cause he wanted to get to the other side! HA HA!!!!!!

No, really. That is the one he told us. Wanna know why we laughed so hard? It is a long story and I have never been accused of being reticent. So here is my best attempt at being abridged and coherent at the same time.

First the back story:

Darling has a step-brother Brian that is the same age we are (34, did I just admit that?) and has Down's Syndrome. He functions fairly well but mostly is like having a five-year-old around. One night the family was out for dinner to one of those cheesy dinner theaters. You know, the ones with the huge, fattening buffets made with large cans of institutionalized foods? Anywho, It was pouring rain, the show was TERRIBLE, the roof leaked and there was no one there. At half-time (I made a funny, it is really called intermission) the Emcee asked if any of the twenty captive audience members (no doubt all family members) would like to come up and tell a joke to warm up the crowd. So, Brian and his friend Brad (who also has Downs) were the only ones to raise their hands. Brian went first and sauntered up to the stage proudly. The Emcee handed him the mic, he cleared his throat, smoothed his hair and said:

Why did the chicken cross the road? To get to the other side!! HAHAHAHAHAHAH!!!

The place was roaring. It was so darn funny the way he acted surprised that no one got the punchline. He was beaming from ear to ear from the fact that someone laughed at his joke. Then Brad jumped up and ran to the stage to collect his thunderous applause. Brian slapped him on the back, gave him a little pep-talk and handed the mic over. This is what Brad said:

Why did the chicken cross the road? (Oh yes he did!)

There wasn't a dry eye in the place. And you could barely hear Brad's punchline (do I really need to type it? You know what he said!) people were laughing so hard. It made an otherwise dreadful evening one of the most fun I've ever had. They were so proud that on the way home they announced they were starting a comedy act. And they kept telling the joke and laughing at each other.

Guess you had to be there.

Anywho, that is part of the reason Darling and I were guffawing over that particular piece of humor.

Here's the other reason: Kid's with Asperger's and PDD (Bug Boy has a dual diagnosis at the moment until he gets a little older and they finally give in and tell me one or the other) typically have great difficulties with emotions, body language, facial expressions, sarcasm, jokes and the like. There is a concept called Social Stories that helps gives children with ASDs a script to memorize and work on until they get it. That way they can function better and interact and not be so isolated. I have been working on jokes and expressions with Bug Boy so I am proud that he FINALLY is getting it. Or at least memorizing it, the kid has a memory like an elephant, I tell you. If he hears you whisper something five miles away pertaining to a year from now, he will remember and remind you. Every five minutes. Until your head explodes like a smashed pumpkin.
So, we are glad the prompting and social stories are working a little bit. He is playing well with some kids, he is playing soccer and not throwing himself on the ground every time a kid takes away "his" ball and looks forward to his after-school group every week. At least things are going well with him. Now all we have to do is get things a goin' for Bugaboo! Stay tuned for his update.