Bug Boy Can be Charming

Bug Boy would do anything to play video games. I am not kidding on this one. We can write a list of chores as long as his arm and he does them, without complaint, and sometimes we reward him with a turn on Playstation. He is rarely allowed to play on a school day. Heck, he NEVER plays before school and only once in a while plays in the evenings. On weekends we stay busy. The grand total for the week (seven days) is somewhere in the vicinity of one to two hours, maximum.

In honor of National Kill Yer TV week, I've decided that it will ALL be off, minus the computer. He is not allowed to play the computer but it is on. This really is not all that difficult, the boys are not television junkies. The watch maybe a total of an hour of the idiot box per week. They are extremely active boys so a certain amount of outdoor time (or basement trampoline and playtime on rainy days) is necessary for all of our nerves to avoid being frayed.

This week, for some strange reason, Bug Boy has been relentless on his quest to play video games. He has always been obsessed with electronical devices (hallmark of ASDs) but this goes beyond the usual eating, sleeping and breathing. He is sneaking around. He is saying and doing anything to be allowed time. He even wants to cash in his reward tickets for extra video game time. Here is our conversation from yesterday morning before school:

Bug Boy: Mooooooom. Pleeeeease. Please, Can I play video games? I'll turn them off on time, I promise! (whining the entire time)

Me: No, Bug Boy. We've talked about this. We've also talked about the way you are asking me.

Bug Boy: Oh. Then MAY I PLEASE play video games?

Me: No! You know the rules. You need to stop asking. The rule is that there are no video games on school days and NEVER before school. Never! Now, go and get dressed.

Bug Boy pouts and hangs his head. He stomps up to his room, disappears for twenty minutes and comes back down, fully dressed. He has also brushed his teeth, washed his hands, combed his hair, washed his face and put his shoes on. This is typically something that takes us over an hour with FIVE PROMPTS and a check-off list to do. Proof that he can do it when he is motivated enough!

Bug Boy: Ok, Mom! I'm READY! I have TONS of time to play now. Hmmmm...what can I do?

Me: Bug Boy, I am glad you are dressed and ready but you are not playing video games. You know the rules. Why don't you get out a library book and read it with me? Or get your lincoln logs out?

Bug Boy: Mom! You are SOOOOOO pretty! You are pretty mom! Mom! I like your hair today! Now, May I please play playstation?

This is, coincidentally, the first time my son has ever told me I am pretty. Which I told him I appreciated. And then I told him he would not play playstation. I am a heartless woman.

This morning we had to drag ourselves out of bed, hitting the snooze several times (who invented that? I want to talk to that person!). While we were busy showering, dressing, ironing, etc, Bug Boy must have decided to sneak downstairs and play, you guessed it, video games. We both tip toed down when we went in to wake him and we was not in bed. The look on his face is one that I will never forget!

When we confronted him he knew he was caught. He also said sorry. He also asked if he could just play for a few minutes. He also told us we looked nice today. Sigh.

I know kids sneak. I know kids lie. I also know they misbehave. But sometimes it is more difficult to get through to Bug Boy. Even though he could recite a list of rules VERBATIM he still stretches or disregards them when he sees fit. That is the egocentric thinking that he possesses. That four-year-old mindset. You know, the one where THEY are the most important person in the universe and therefore whatever THEY think is good and appropriate must be the correct viewpoint? Let's just say for the sake of argument that the powers that be estimate Bug Boy's emotional and social skills to be that of a four-year-old. At the age of six. This does make things difficult. I must remember that I have to explain to a very intelligent six-year-old in a way that makes sense to a four-year-old with consequences appropriate for his age.

So, no video games. In fact, he has lost them this weekend. I am happy since I don't have to hear the music for Star Wars Lego for a while. Killing the zombie machine is not so hard to do.

Totally off topic: we received Bugaboo's progress report yesterday. For the first time in eighteen months of early intervention our child has MADE PROGRESS! I mean, I know he has made progress, but we are talking real, measurable progress towards his IEP goals. This is a grand thing, indeed. Bugaboo has had plenty of regression and difficulties this past year, the report is the best thing since sliced bread, in my opinion. He has mastered or possesses over half of his goals! WOOOHOOOO!!!

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?

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!!!!!

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!

The Magic Pill, Revisited

Perhaps I was a little too quick with my conclusion.

Let's just say the past few days (weeks, months) were difficult. I know that NO ONE SAID IT WOULD BE EASY, but what do you do when your child is exhausted and yet cannot stop moving? Or knows that he is not supposed to touch things, but cannot control the impulse to touch it? Or knows that he is not supposed to run outside, but MUST RUN OUT IN THE STREET because he cannot control himself?

This poor child has not stopped moving in months. I mean, we always knew he had energy, more than the average three-to-four-year-old, but this is getting out of hand. He seriously does. not. stop. Ever. He CAN'T stop. I know it is upsetting to him. It is upsetting to us! We are frustrated because he is frustrated. We do not know how to help him.

On one hand I would like to blame it on the seizure medications. They are supposed to make him drowsy, sleepy, slow him down. He is supposed to be improving behavior-wise. He is supposed to be sleeping well at night! These medications are working for Bug Boy. He has only woken up a handful of times with night terrors or other reasons. His meltdowns have STOPPED COMPLETELY except for the occasional, normal, six-year-old temper tantrum. I feel as if it is the answer to our prayers with him. His attention is better, his mood is better, his energy level is better. He is happier! YEAH!

But Bugaboo is not doing well on them. He has been waking up nightly for the past three months, after three months of him getting back on track. In school, he is improving by leaps and bounds. He has a TSS that is working well with him. His teacher and the staff are AMAZING, I kid you not. He has the occasional moment at school when he just will not do something, but on the whole he is doing well. Once he steps off of the bus, however, it is an entirely different story. The seizure meds are wearing off, he has been through eight hours of demanding "work" and is tired. The paradox is that once he passes through the treshold of being exhausted he actually becomes more hyperactive. The more exhausted he seems to be the more destructive behaviors he exhibits. He comes home and stims, stims, stims. He does not seem to be having fun when he comes home. He seems lost, cannot slow himself down, seems empty. We look forward to getting him to bed instead of looking forward to spending time with him. I feel guilty about that.

Bugaboo takes all of my energy. I save it all day so that in the four hours (four until eight) that I spend with him I have enough energy to get through it. Some days I do not. He takes more energy than the average child, I would say three times as much as Bug Boy. I can deal with a typical child all day before I lose it. With Bugaboo I am lucky to make that four hours. As a parent it is frustrating. I am SUPPOSED to deal with this. But some days (like last night) I cannot. I called Darling and told him I was done, DONE for the evening. I told him I could not handle taking them to indoor soccer, even if it was an hour break for me. He dropped everything and ran home, wolfed down his dinner and took the boys to soccer. Once there, he and I walked the track the entire hour. It felt GREAT and gave me enough of a recharge to finish the evening.

The moral? I need to get back on a consistent gym schedule. I have not gained weight and I have been eating better (and, surprisingly, less) than I have in years. I feel well health-wise. I just need to relax more. Relax=exercise as much as humanly possible, in Marj-Math. So, back to daily walks and three to four trips a week to the Y. I finally renewed the membership after forgetting to stop by three weeks in a row!

Magic Pill? Last night I wanted one. I HAD IT. It was especially difficult for Darling who had never really seen an older child with severe autism. I was telling him about the different children last night and he kinda sobered up. He pointed out one little boy (about six) and said he thought that Bugaboo would be like him in a few years. He asked me if he would be. I just do not know, I wish I had those types of answers. I wish I knew what to expect. It just does not work that way. Darling and I talked about how it is going to become more difficult before it gets better and we just have to be prepared to deal with it. We have to work on our acceptance of this situation and realize that there is no "cure" to speak of ( I know, there are those out there that spend thousands if not millions to find "cures" but we just do not believe that is for our Bugaboo.). We do not know what tomorrow will bring and we are just going to have to deal with that. It does not make the situation any easier but it will bring us peace. Realizing that something is out of your control is scary until you realize who IS in control.

Magic Pill Today? I dunno. If there was a way to help Bugaboo slow down, to calm down this level of activity, we feel he would be happier. We just do not know what it means medically and will not know until the results of the EEG are in and we can speak with the Neuro. We may be able to alter his meds so that he receives more of one and less of another. Who knows if it will help. As a last resort, we may try a hyperactivity medication, although I am DEAD AGAINST it. Everyone else in Bugaboo's life wants to give it to him. HE IS FOUR!!!!! I know it may help him but, HE'S FOUR!!! We shall see. I do not know if we have hit rock-bottom yet. That might sway me.

Have a nice day. I am going to take a loooooong, hot bath.

I Do Not Know What to Say

I had this glorious, well-thought-out post written in my mind, I could not wait to sit down and post it. I hurried through my morning routines, roused the sleepy Bug Boys from their cozy beds and gave them breakfast and meds. And then all heck broke loose.

Bugaboo had a global nuclear meltdown. I could not get to the bottom of it. He did not want the brown shoes, he did not want the black shoes. He did not want the wet diaper on but he would not sit still for the dry one. He did not want his coat on and yet stomped his feet and screamed to get it on. I am sitting here in front of this computer completely shell-shocked. It came out of NOWHERE. Usually I have some sort of warning or at least expect them to get upset about a variety of things. There was nothing out of the ordinary this morning, at least as far as I could see. He even cried and refused to get on the bus! He NEVER cries getting on the bus! He did NOT WANT TO GO. I made him. I needed him to go, I was about to totally lose it.

The teacher will call me if he does not calm down by circle time, an hour into the day. The get to school, put their things away, do free play (not his favorite part, as it is unstructured), potty time, and go over their schedules. Then they do circle time. If he is still crying I asked her to call me to get him.

Of course, today is the day that I finally decided to take care of ME. I have plans to have breakfast with my dear friend who is a great listener and still likes me even though I have kids with issues (my friends with children with disabilities can understand this one. It is the same thing that happens when you have kids and your friends don't. They stop calling and don't answer your calls anymore). My friend wants to talk about NORMAL LIFE and asks me questions about Autism and does not make me feel uncomfortable. Of course, she is a doctor of Psychology so perhaps that is why she is so good at it! Anyway, we plan to meet this morning.

After breakfast I was going to rescue my house, ala Flylady. I need to pick up each room, get some laundry folded, reboot the laundry and run the vacuum. I have not vacuumed since this weekend! It is AWFUL! There is still rice on the floor from last week when Ian had a throwing contest in the kitchen and I know some of it ended up in the heat vents. There are also blobs of dog hair everywhere, as Shad Roe the Dog is losing her winter coat, the inevitable Springtime ritual. My floor is covered with muddy dog prints and kid shoe prints due to the fact that NO ONE can stay out of the mud. Sigh.

When the housework is finished I am going to get my haircut! For the first time in FIVE MONTHS! Yes, I promised I would do it more often but time got away from me. I am embarrassed that the last time I had my hair cut was on my birthday. In October.

I plan on shaving and showering, too. Not that you needed to know that, but I plan on it. I might even paint my toenails.

So you see, Bugaboo's tantrums need to stop NOW. I am praying that the bus provides the sensory input and calming that he needs to focus and get ready for school.He is on that bus for an hour. I need this time to myself!!!

Nekkid Baby

I have spent the entire day chasing Bugaboo down.

It seems he has developed a propensity for undressing. He has always enjoyed undressing himself but enjoyed being wrapped up from head-to-toe (footies, snowsuits, etc.) more. He now likes to get nekkid and stay that way. The child whom I used to envision cutting grass for a living (due to his absolute devotion to all things lawnmower) I now envision becoming a Chippendale or pron star (yes, intentionally not spelled correctly to chase off the Googles.).

Here is what our day looked like today:

• Bugaboo wakes up. I dress Bugaboo.
• I wake Bug Boy. Bugaboo is no longer clothed and pees on floor.
• I clean up pee, make breakfast.
• Bugaboo is again undressed, peeing on floor.
• I dress Bugaboo, clean up pee, get Bug Boy ready for school. He gets on bus.
• Bugaboo is (SURPRISE!) not dressed, starting to pee on floor.
• Friends come over. We go outside. Bugaboo takes his shirt off. The other boys think it is great and want their shirts off. Bugaboo removes his shoes. The other boys want to remove their shoes. Bugaboo starts pulling off his pants. I stop him before we have gaggle of four-year-old boys doing the full monty in my backyard. We live on the corner, we could have given them all a good show.
  
• Friends leave after a few hours. My back hurts, I try to rest on couch, Bugaboo leaves for a minute, running to window to watch the first school bus of the afternoon and returns to the room sans clothing. The diaper is being worked off. I catch him before he pees on the floor.
• I get up to start picking up and preparing snacks for the big kids when they get home. Bugaboo is stripping and twirling in circles (and laughing). He starts to pull diaper down and pees down his clothes.
• I take Bugaboo upstairs to get him new clothes and a diaper. We go downstairs. The doorbell rings. First kids off of bus. Bugaboo comes into the foyer, yup, no clothes. No pee this time, though. Thank goodness. The second round of kids gets here.
  
• Therapist comes. We keep him engaged for an hour. Therapist leaves. I turn to get dinner started. Bugaboo disappears into his room, per usual. He comes downstairs and does the nekkid baby dance in the kitchen. I catch him as the girls giggle and scream, he runs off up to his room. When I get there his room is covered in puddles of pee. Yippee. I strip his bed and take the laundry downstairs to start washing all of the stuff covered with pee.
• I return upstairs and...he is no longer clothed. After I dress him (can't find any puddles) an hour later I find a pee spot on the COUCH! ACK!
• Darling comes home and wonders why dinner is not ready and I am crying. Hmmm...

Needless to say, I will be steaming the rug in several places tomorrow.

The good news? Each time Bugaboo has stripped I have put him IMMEDIATELY on the toilet. I explained to him that if he wanted to be without clothing he had to sit on the potty. He would smile and sit for as long as I wanted him to. He would get dressed, cooperate, disappear and it would start all over again. More good news? We only went through two diapers today because he took his diaper off EVERY TIME he had to go. I have known for some time that he could feel it just by the way he reacts each time he urinates or has a bowel movement. Even better news? This seals the deal on our decision not to replace the nasty, horrible, ugly carpet. We are going to save tons of money with his little peeing habit. No new carpets, less used diapers. A win-win all the way! WOOHOO!!!

Just trying to be positive...at this point I am so fried I am giddy with glee.

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!

Bugaboo's Latest Antics

Bugaboo has had a complete personality change the past two weeks. Gone is the smiling, happy and active little boy. In his place is a miserable, screaming imp. We do not like the newer version of Bugaboo and would prefer it if the old Bugaboo came back to us. Have you seen this child?

Seriously, though, the past two weeks have been difficult for him medically. He had a wicked ear infection a few weeks ago, got an antibiotic shot and it cleared up. Then he started with horrible tummy troubles. We started on the new tummy meds, things started to clear up and the screaming began. We ended up back at the doctor with a raging ear infection, resulting in both of his ear tubes being projected out of his ear drum. With some drops he has been doing much better, the Motrin helps the rest. This weekend we chose to stop the laxative, as he was going SO often that it seemed to hurt him.

Big mistake. Since he arrived home from school today he has cried, bitten his hands, screamed, run around screaming, run around laughing, destroyed half the house and has been giving us massive drama about going to bed. We started the bedtime routine at 7:30. I am posting this at eleven and DH finally has had the last straw and is taking him for a ride. We've tried warm baths, hot compresses, rocking and pacing, cuddling, singing, feeding, drinking, he just won't settled down. He screams so much he is closing his eyes (pure exhaustion) and still screaming. Something is just not right.

I know he needs to go to the bathroom but that cannot be all that is wrong with him. Couple that with the fact that he just cannot explain how he feels and the fact that he must be frustrated being belief, and you have a recipe for disaster. This child is at his breaking point. He is angry, frustrated, moody and sad. He is not the child that I know. I am hoping that this anger will lead him to the place we need him to be. None of us can take much more! We are ALL tired and depressed about it. We just do not know what the next step is. I have prayed and prayed and cried and cried. I need answers for him.

This evening he tried to run himself a bath. I was cutting out paper dolls with my little neighbor girls (we were sitting RIGHT under the bathroom, mind you) and the water must have been running for ten minutes. Little Miss and Middle Girl asked me to print out more doll clothes so I sat down to print them and he came running into the room crying. Middle Girl kept trying to tell me he was wet and I brushed her off, my eyes still looking for paper dolls. I figured she meant like his diaper was wet or that he was playing in the sink again. She said, "No! He is REALLY wet. I mean REALLY!" I turned to look at him, noticed he was fully clothed and completely, soaking, wetter-than-a-fish wet. I also saw a trail of puddles through the kitchen so I went up to the linen closet to grab towels to dry him (and the floor) and only then did I hear the tub running, drain closed, showerhead partially on. The water was freezing cold and up to the top of the tub. I caught it just in the nick of time.

I am sitting here right now emotionally and physically drained. I am sore from rocking his thirty-six pound body. I am tired from not sleeping a full night for two straight weeks (and six straight years) and for not sleeping a wink for two nights. I am weary because I feel defeated and trodden upon. Tonight Autism is winning and I do not want to let it. I refuse to have this take over my child and change him. I want better than that for him. But I am oh so tired...Shhhh...Shhhh...

They are back. Please pray he is asleep. Please pray that he is better tomorrow. Regardless, I will be calling the doctor and staging a sit-in until someone figures out what the hell is going on.

Bugaboo and the Bad Ears

For the past week Bugaboo has been miserable. He has cried constantly and it takes us forty-five minutes to an hour to calm him down. Just when we think we have it figured out he starts all over again. Since he hasn't been going to the bathroom everyday we figured it was his bowels and reflux acting up again.

The GI recommended we put him back on the laxative and we did. After a week on it he still wasn't producing a bowel movement everyday. The screaming and crying was getting progressively worse and his personality had done a complete turn around at this point. Gone was our happy, laid-back content little smiler. In his place was a miserable, reticent child that I did not care for too much. We updated the GI yesterday (it had been a week and it was getting worse by the hour) and she suggested doubling the laxative, adding Milk of Magnesia (good luck getting it into him!) and a suppository as a last resort. He FINALLY started going to the bathroom last night and it quickly became diarrhea, which was the plan. They wanted him completely flushed out to be sure there was no obstruction or twist. If he did not go by this morning they wanted him in the ER for an x-ray or CT scan.

Last night I had a parent meeting and returned home at nearly ten o'clock. Bugaboo was still awake, still crying, completely miserable. Darling had tried several times to get him settled and to get him to sleep. He finally gave up. Bugaboo just screamed and screamed. I tried getting him calmed and tried every trick in the book. He was finally asleep, exhausted beyond belief, around eleven, nearly four hours after his typical bedtime. Darling and I were also exhausted, I had dealt with the screaming all day!

This morning he woke up at the regular time. He was groggy and cranky. He barely touched his food. By ten o'clock he was crying again. After an hour of it I COMPLETELY lost it and yelled at him. I think I had finally reached my breaking point after a week. I just picked him up, looked in his face and yelled, "WHAT IS YOUR F-ING PROBLEM????!!!!" Of course, that just made him cry more and I felt awful for it, but I was at a total loss. I tried calling Darling at work. No answer. I tried calling two of my friends. No answer. That was the straw that broke the camels back, so to speak. I decided that the only person that could help me was the pediatrician.

All I had to do was tell them he was screaming for days, they heard him screaming and said, "Bring him right in!" I packed up Bugaboo and his school buddy that I am watching this week and away we went. She checked his belly. Soft, no distension and slightly gassy, but fine. She checked his breathing. Fine. She tried his temp. Normal. The fact that it is an ear thermometer and he went postal should have been my first clue.

Normally to look in his ears we have to restrain him. I have the technique down pat: He sits facing away from me, my legs over his, one arm wrapped around his shoulders to hold him against me and keep his arms from moving and the other arm holds his head to the side against my shoulder. The doc (amazing woman!) dives in and checks one ear, then we move his head the other way. It is NOT easy. He REALLY fought us this time. And when she finally got a decent glimpse (easy, since you can see his nekkid ear drum with out an otoscope, his ear canals are deformed) she exclaimed, "OH WOW!" And proceeded to tell me that there is blood in his ear canal, the ear drum is bulged out, the tubes are popping out from the extreme pressure in his ears. No wonder he is screaming in so much pain! The whole time we thought it was his belly, and part of it might have been. It just never occured to us that his ears would be bothering him. He just had a WELL VISIT on Friday, for crying out loud! They looked fine! It happened THAT fast.

Normally we have a few clues. Low grade temp, nose stops running (which it did! But I just didn't notice!) the dog goes nuts licking him. I think we just weren't paying attention, or, were side-tracked by the stomach issues. I know we shouldn't beat ourselves up over it. But the truth is I feel like every time he makes some decent progress we end up taking several steps backwards. This past week was especially frustrating and difficult. He just wanted to be left alone, but when he cried he wanted us to pace around the house holding all thirty-six pounds of his four-year-old body. Since he is more than half my size, that is not easy for me!

I am really hoping and praying that next week, when he returns to school, he is well and happy and ready to go back. We need some massive progress soon.

Well-Itnentioned People

I receive several calls and E-mails a week about everything related to Autism. There are people in my life that try to make sure I hear everything that is out there, which I appreciate. There are also people in my life that think I have my head in the sand and feel they need to point out every little thing in every little report and then call me and ask me if I've read/seen/called about it. While I appreciate their thoughtfulness, it is starting to get OLD.

My Mother-in-Law never passes up an opportunity to give me information. She is the one, by the way, that called my husband one night when I was out (on purpose, so she could lecture and grill him on how we have our head in the sand, even though all along we were PRIVATELY deciding how to handle the matter and were in the process of seeing specialists and having him tested) and decided that Bugaboo had Autism, because she read a list on the Internet. He was fifteen months old at the time. She complained that he never looked at her and he screamed when she came over. Never mind that we were struggling with the realization that something was going on with our child. I can't help but feel that it was an, "I told you so!" situation. I felt like my parenting skills were being judged.

Now, she truly does dote on the kids. She lives close by and comes over when we need her. When Darling was on his recent business trip and I ended up with a stomach virus, she came over when I needed her. She has done that many times in the past. She is the one that came over as much as we needed when we were new parents, and again when I had a C-section and had a two-year-old at home.

I guess I feel uncomfortable with her passing so much along because it is usually old information that we've seen and discussed and because she almost always asked if we've tried that for Bugaboo, if we are considering it for Bugaboo or if we think we should do it for Bugaboo. Because, you know, it is that easy. Just read it in Newsweek and VOILA! Instant thousand-dollar therapy for your kid that has no scientific research and no guarantee it will work for any child. Just a bunch of doctors who say, "Hey! They want a cure! Let's give them anti-psychotic drugs and see what happens! Let's put them on funky diets and see what happens!" Sorry, call me a doubting-Thomas but I ain't trying stuff like that on my child. He is not a Guinea Pig.

Don't get me wrong. We've considered some weird things. We've done the GFCF diet (very briefly) and we've put him on vitamin supplements. We have tried essential oils (he HATED them) and certain behavior therapies. But one thing that drives me crazy is when people hear you have a problem and say, "We have a drug for that!" Remember, my Darling works in pharmaceuticals, and we know more dangers and risks than most people. There is a time and place where medication is useful and needed, but we believe very strongly that our child will not be on psychotic drugs. It is not worth the risk of added ticking, liver damage and stunted growth just to make him "more aware" of his surroundings.

That said, there are other medications that we may pursue in the future. He is only four years old! We have no way of knowing how he will change in the next year. Part of me feels that I am not giving him every opportunity available and wants to give him meds to see what will happen. The other part of me says that it isn't such a good idea, that we need to give him more time. But then again, we feel like we are running out of time! We feel like he is four and we need to DO SOMETHING!!!! What if we find out a few years from now if we just had rubbed lotion on his ears or had just made him eat popcorn once a day, that he would be talking to us. I know it sounds silly, but when you are in this position you feel like you could try anything. Then your senses kick in and you laugh at yourself for your clouded judgment. Then you pray even harder for guidance because you want God to send you on the right path.

I know there is a plan for us. Bugaboo is here to teach us something. He is here to prove the statistics wrong and to bring our family closer. He is here to teach us to fight for our needs. He is here to make us rely on one another and to love each other unconditionally. I am sure if there is more, it will be revealed to me. I've always prayed for patience...guess what? I am learning it now! Your prayers are always answered, friends. The answer isn't always the one you want.

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.

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.

His brain is doing jumping jacks!

Bug Boy explained that when he has seizures it is like his brain is "doing jumping jacks." We thought this was an interesting analogy and very effective at letting us how he feels. The medications have been working well for both boys and we have seen good progress. They seem more aware, more alert, happier and calmer.

Bugaboo has had twelve seizures between Friday morning and Monday morning. He does not have grand mal seizures (yet) but an interesting phenomen called Complex Partial Seizures. Basically his brain has a very short version of a grand mal, some electrical short circuiting. The doc called it a tonic-clonic seizure. Since he has a diagnosis of Landau-Kleffner syndrome it does not suprise me in the least. The difficulty with this situation is that he will continue to have seizures for some time. The meds will only do so much.

Monday (yesterday) Bugaboo's bus arrived and he was one sleepy little boy. The driver and aide do their best to keep him awake since they know that I have a better time in the evening when he does not nap (because he will not go to bed until midnight!). He was so sleepy he put his arms up for me to carry up the driveway and steps and did not even watch the bus pull away, nor did he watch the 4:00 bus bring the elementary kids home. His TSS arrived and Ian was just camped out on the couch kinda dazed. We tried getting him to do a few things but he seemed tired and distracted. Then he had four seizures in two hours and I put a call into the Neuro. The Nurse Practioner called me back and did not like what I was describing so she called the doc. He called back and said they were clustering, which means they are getting into a close pattern and will progress VERY quickly into a grand mal. In fact, we were probably leading up to one in the next few hours. In order to head it off before it started, the doc asked us to give him the Diastat usually reserved for grand mals and then double his Klonipin. At bedtime we were to give him his usual dose of lamictal. These are all very powerful seizure medications and muscle relaxants so we thought Bugaboo would pass right out. Riiiiight.

Bugaboo was loopy and could not get his sea legs but it took us over two hours to get him to sleep. He even ate a brownie, his third brand-new food in a week (the other two are m&ms and ice cream, guess who is developing a sweet tooth?). But sleep was very far away! We even resorted to a car ride and he was still awake upon returning. Mommy and Daddy went to bed and he was still in his room, in bed, undressing himself and redressing himself, singing to himself in that sing-songy voice. We awoke to him still singing at 6:30 am. I am not sure how much sleep he had.

I prepared his meds and breakfast and Bugaboo had one more seizure. He has had his medication and seems to be in a holding pattern. We will call the doctor soon and let him know how Bugaboo is and they will decide if we need to come in. Since I am not exactly anticipating our SEVENTH trip to the ER in 2006 with great joy, I'd prefer that we did not have to go at all.

Bugaboo has to stay home today so we can monitor him (Yippee! A whole day of him tearing around the house destroying everything!) and because the meds can make him "impaired." Yeah, because he isn't impaired already! HA! I know, I know. They mean that he will be a little hung-over. Plus they want to see how many more he might have today. I think I am going to plan some shopping in order to keep him strapped down for a while...

Pure Exhaustion

What I should be doing right now:

• Stripping beds to wash linens
• Feeding Bugaboo
• Getting Bugaboo dressed
• Packing bags for day-long adventure at duPont
• Showering and dressing myself
• Picking up around the house to get a head start on what I have to do later when I finish the appointments.

What I am doing right now:

• Slowly nursing a cup of tea. It is supposed to be hot but I cannot bring myself to stand and nuke it.
• Sitting and staring at the walls.
• Reading blogs.
• Dozing off in between.

Bugaboo was up last night. For a very long time. And when I say a long time, I mean a looooong time. Screaming, running back and forth, pushing on me, pulling me, begging me to pick him up, running to the fridge, making me get on the couch, crying because I had the audacity to lie down on the couch, pushing me to get on the dog bed with him (his favorite place to snooze). I tried getting him something to eat and drink and he stared at it. I rocked him, he pushed me away. I took him to bed, he shook like a leaf and begged to leave the room. I turned on his fake fish tank, he cried. This went on for several hours. Darling tried to take him so I could sleep and attempted to take turns but Bugaboo would push him away and take him back to our room. The dog tried to comfort him (and me) but he wanted no parts. He finally pushed me back onto the couch, pulled his favorite fuzzy blankets over us and drifted off to sleep. At 3:30 am. Since our alarm goes off at 6:30, that gave me a grand total of 3.5 hours of sleep, since he woke up JUST as I drifted off at 11.

I can barely see what I am doing, sounds like some caffeine may be in order. I have to take him for a feeding behavior evaluation and then to the Neuro. Little Bugger slept in until nearly 9! ACK! And he is in the best mood possible. That is a good thing, since I am not exactly in love with him (or his behavior) at the present time.

Wish me luck...

It's 5am...

Scene: Hatzell home. It is five o'clock in the morning.

Marj bolts awake from a great dream about her son's neurologist. She will not insult you and tell you the details of that dream, since you can probably guess. Marj hears something, looks over at her husband. He is fast asleep. The dog is snoring at the foot of the bed on her favorite blanket. Marj is just about to settle back to sleep when she hears noises across the hall.

A blood curdling scream ensues, followed by banging on Bugaboo's door. He is trying to get out of the room, but they keep it locked so he cannot go outside to play in the wagon at six am, like last week. Marj jumps up, opens Bugaboo's door and tried to quiet him quickly, so as not to wake the rest of the household.

She cuddles with Bugaboo as he screams and flails his arms and legs. He is out of control, running around the room, literally trying to climb the walls. She scoops him up again, attempts to climb back under the cuddles and whispers to him, "It's okay, Momma is here. Shhhh...Momma is here, it is okay." He continues to scream, attempts to flee. After fifteen minutes of out-of-control screaming Marj decides to try getting Bugaboo something to drink. This, of course, sets him off screaming the most horribly imaginable cry. He sounds like someone is trying to hurt him, like he is scared beyond belief.

Marj makes her way downstairs in the pitch black as quickly as she can drag her sorry behind down there. Once the cup is filled (exact proportions of juice and water, just the right temperature!) she groggily climbs the stairs again, grasping for the railing that has not been hanging on the wall since she moved into her home a year ago. She enters Bugaboo's room, hands him the cup, "Here, sweetie. Momma got you some juice. Do you want to drink your juice?" Bugaboo stands there screaming, but manages to take sips in between the hysterical hiccups. He can barely take a breath, is shaking uncontrollably. He begins to quiet down. Marj snuggles down under the covers once again. Ever few sips he returns to the wild-animal-like cry. It becomes clear that this is not going to stop without some desperate measures. With a sigh, she tells him, "We are going downstairs. " He takes her hand and they walk down slowly.

They make it to the family room and Marj turns the dimmer on very low. She turns on the television and asks Bugaboo what he would like to watch. He stands there gasping and crying, "Maaaamaaaaaa!" She shows him Chicka Chicka, Thomas and Wiggles. He stares at the Wiggles. She takes it as his sign that he made up his mind and puts Top of the Tots in the DVD player. Not her favorite!

The music starts and Bugaboo climbs on the couch. He is finally silent. It is nearly five-thirty. Marj gets blankets and they snuggle on the couch. She drifts off for a few minutes but he climbs onto her and wakes her. She must keep watch with him. He will not allow her to close her eyes for long, placing his chilly hands on her warm cheeks and making eye contact with her each time. She still manages to drift off a few more times before the DVD goes back to the main menu. He hops down off the couch, runs to the DVD, pushes play and then climbs quickly under the covers. The next time Marj opens her eyes he is putting the DVD on for the third time. A few moments later she hears someone get up to go to the bathroom. The alarm is going off.

Marj reluctantly gets up from the couch and wearily goes upstairs to make sure Bug Boy and Darling are getting up, showered and dressed. She dresses herself, pulls her hair back under a bandanna and returns to the kitchen to start breakfast and get medicine for Bugaboo. She makes darling's breakfast (toast with honey) and begins fantasizing about dozing off peacefully once the kids are on their buses and Darling goes to work. That fantasy is interrupted by the realization that she watches her neighbor's children before and after school.

An hour later Bugaboo is dancing up and down the sidewalk waiting for his bus. He sees it off in a distance and hugs Marj's legs. He laughs out loud and claps his little hands together, holding one of his bus toys. As the bus picks up the child down the street Bugaboo begins to jump higher than a Jack Russel. The bus finally pulls up to our driveway and before the driver can put the bus into park, turn on the flashing lights and open the doors, Bugaboo has already tried to pry them open. He jumps on the bus, the aide straps him into his five-point harness and they soon drive away. Marj waves to the children, happy that she gets a few moments of peace but sad that she will not see her kids for nearly eight hours. It is sometimes more that she can stand.

Very Wordy Wednesday - Unconditional Love

Monday is the end of an era. And the beginning of a new one.

Monday Bugaboo will be in full-time school. At the age of three.

We are hopeful that this will be the beginning of amazing progress. We are hoping that this will help him learn to communicate. It seems that everything else we have tried has not worked.

I have spent the last six years at home. I have put off plans to finish my Master's. In what, I no longer know, but you can bet it WILL NOT be in special ed, since I no longer have the desire to work in that field. I know I'd burn out, working with those loving but demanding children all day and then having to parent my own children at night. Nope, not gonna do it. Wouldn't be prudent.

Having two children changed my life in ways I never imagined. I cannot even begin to describe the joy of being a mother. Even though I thought I'd be single forever and childless even longer, once I found out I was having Bug Boy it all changed. We spent two weeks in utter shock at the thought of , "Us? Parents? Uhhh...." and then it clicked. We knew it was right for us. We wanted it and we were so overwhelmed with happiness.

Not to say there are not times we'd like to pull our hair out in frustration. Being parents means sacrifices. It means thinking of them before yourself. It means that if there is one serving of potatoes or bread left, they get it before you do. And y'all know how hard that is for me. It also means loving them unconditionally.

So what is this crazy little thing called unconditional love? And what are we supposed to do with it? Patience, I am getting there!

It is accepting the way your spouse/child/relative/friend is made and living with it. It means that if they blow their nose in the shower you just have to ignore it. (Pick your battles on that one, girls! ) It means that if you have two boys and really, really want a girl, but cannot get pregnant or else it could kill you, that you need to accept it and move on. It means that if your children have special needs that they are still loved without batting an eyelash. It means never wishing your life was different somehow, no matter how difficult it becomes. It means never looking at your siblings and wishing that you had what they have (like the bigger house, the husband who makes more money, the nicer car, the newer furniture, the more normal kids). It means accepting that your mother has a mental disorder and that she will never be the kind of mother you always wanted, you know, the one that calls every week and wants to see the kids? It means realizing that Darling will NEVER get me flowers for any holiday or birthday or anniversary, but he WILL get up on Saturday morning with the kids, do all of the dishes, feed them and clothe them and then let me sleep as long as I want.

Side note: This one took the past ten years to get over. For some silly reason I actually was miffed he didn't buy them, especially since he knows I was born a flower person and prefer to be with plants over people. And I even talked him out of waiting until 6pm on Valentine's/birthday/anniversary and driving around to every florist in the tri-state area, looking for yellow roses (which have to be special ordered most of the time), only to find that florists close around 5 or so, and then ending up at the grocery buying half-wilted flowers and dinner getting very cold and wifey getting very Irish while we all sit at home wondering where the heck he is because he never turns on his stinking cell phone.

There now, feeling better?

Moving right along: This unconditional love thing has brought me to the point of accepting the fact that if my child were typical he wouldn't even have started preschool yet, that he'd still be home with me, eating eggs dressed in his jammies while we cuddle and read stories, bundle up to go on long nature walks in our neighborhood, collecting pine cones and acorns to adorn our front porch (since they ain't bringing those nasty things in my clean house, thankyouverymuch!). It has brought me to the point that even though half of my heart goes with him on that bus every morning I think of him the whole time and realize that he is in a place where he will someday learn to WANT to go on walks in our neighborhood collecting pine cones and acorns. Because right now walks in our neighborhood means he goes up to everyone's car and tries to get in (little car obsession there), climbs every porch he sees and tries to get in the house, ignores every neighbor when they smile at him and ask if he is enjoying his walk with mommy and then runs down the sidewalk to avoid having to make the dreaded eye contact with someone.

So, as much as it hurts to send him away everyday to be with people that are NOT his mother, and even though I was programmed at an early age to believe that staying home with Momma until kindergarten is the only way of raising a child, I am now altering my pedagogy, albeit slowly, to believe that there is something better for him out there. That I can only do so much as a parent, especially since I am not his therapist (even though I was trained as one). I am first and foremost a mother. I can be a mother, a good one, and still let go.

That, my friends, is love.

Pull ups

Here are some of y'alls comments about the pull-up comment yesterday:

1. "You can get them for free with Medical Assistance (which Ian has, due to being a child with a disability)."
2. "He can take care of the pull-ups himself, not the diapers."
3. "She can just change herself."
4. You are a crazy nut-case and oughta get a life (I made that one up)

OK, so it didn't dawn on me about the Independence thing. You know, like DOING IT HIMSELF??? HEEELLLLOOOOO!!!! I mean, isn't the whole point of all of this to be able to do things himself? To gain a better quality of life through Independence? To be self-sufficient and able? I think further thought in this area is required. I hadn't looked at it from quite that angle before.
And for the record, I am NOT potty training. But I think this is the start of something good.