Beware of the Coke pirate

Okay, we were spoiled. JP spent nearly 4 1/2 years before he discovered soft drinks. Well, a few months ago, he discovered Coke and Pepsi. I don't know where you stand on the debate. Personally, I can't really tell them apart. My loyalty is that I drink whichever is available. (However, I don't do diet!) Anyway, the standing joke in our house is that you never get to finish your own soft drink. If JP sees you with one, he somehow manages to take it over.

For example, my mother is a diehard Coke fanatic. She quickly learned her lesson. She is what I call a "sipper". She will open a can and sip at it for hours. That just will not fly in our house! JP saw her Coke and of course politely requested some. She graciously poured some into a cup. He drank it. Then he also took her can and finished it. Of course, he still said thanks!

Well, now this story is going to get a little less adorable.

We went out for supper a few nights ago. When asked what I want to drink, it has just become habit to say "Coke/Pepsi". It is just Murphy's law that if you say "Coke" than they will go through the whole spiel about carrying Pepsi products. So I just try to cover my basis and slur the two brand names together. It usually works. I rarely know if I am drinking Coke or Pepsi but then I don't really care.

Well, the hubbie and I had both responded and to my surprise JP chimed in that he would like a Coke. He looked so proud to be saying it himself and to be honest I was quite proud. He doesn't usually respond to the waitstaff.

Okay, here is what she brought him. Can you see the problem?

The rest of the world understands that these two items are universally interchangeable. Try explaining that to my son. He FREAKED out! I know that he was proud of ordering for himself and I partly believe his meltdown was more severe because he felt that his communication attempt broke down. I could feel his frustration and disappointment.

He didn't seem so concerned about what he was drinking but rather what label was on the cup. He ordered a Coke and the cup should say "C-O-K-E" not "P-E-P-S-I"! He was more upset than I have seen him in a long time. There was no reasoning with him.

The family sitting next to us was amused for the first few minutes. The waitress felt bad. I just kept wondering how tolerant the world would be if this was my 14 year old son reacting this way rather than my 4 year old. Most would just assume it is a child thing--not an autism thing. But he won't always be a child.

We have worked so hard to avoid rigid patterns in our life. These situations blind side you and make you wonder if you can ever really equip him to deal with the ups and downs of our crazy world!

Reality Check

Last night I experienced the single worst moment of my life.

We were getting ready for bed. Baby T downed about half his bottle and then he and I were sitting on the floor doing the diaper and pajama thing. It was an ordinary night. He was standing up as I zipped the front zipper to his footy pjs. In my mind, I hear the woosh of the zipper, see him tipping the bottle to his mouth and then I hear some sort of noise. I can't describe the sound.

Then my baby just collapsed in my arms. He went stiff and unresponsive. His eyes were closed and he didn't seem to be breathing. My first thoughts were that he was choking but he hadn't had any opportunity to put anything into his mouth. He hadn't gagged or coughed before collapsing. He was turning red. I thumped his back. Still no reaction. He was just in my arms limp. His mouth area was turning blue.

I screamed for my husband who was downstairs. I scared the crap out of JP who was playing in the living room with us. He started crying but I was too frantic to deal with that. I yelled again. And again. Finally I carried T to the stairs and yelled directly into the basement. Dad came scurring up. He was freaked out. I was freaked out.

He grabbed T and grabbed the phone. I just stood there. What could I do? I headed to JP to calm him down but then realized that I couldn't leave T. I just stood there paralyzed.

As we were on the phone with 911, T opened his eyes. He was back! Thank God!

I have never been so scared in my life! He was a little out of it and kept nodding off. The 911 dispatcher told us to take him to Urgent Care just to check everything out. As we loaded him in the van, he smiled at his Daddy. That eased some of our anxiety.

That was the longest drive of my life. Then the Urgent Care folks told me I would have to take him to the Hospital Emergency room. So I loaded him up and set a new record for the the longest drive of my life. Of course, this is after 9 pm and he is a tired boy. I am alone with him in the car (Dad stayed home with JP) and T keeps dozing off. I am panicked. Is he sleeping or is he unconscious. He has not even made a peep since the "event".

Finally, we get to the hospital. He just seems to bounce back. He finally starts babbling again--a lot infact. He was friendly and smiling at the hospital personnel. He was up and exploring every nook and cranny in the exam room. He was acting fine. He didn't seem bothered at all.

I wish I had an explanation. I wish I had an assurance that this won't happen again. They couldn't give me one. But they don't think it was a seizure. He didn't twitch while unconscious and he had a pretty quick recovery. They say this "kind of thing"actually happens pretty often with young kids. They compared it to a fainting spell. But why would he have "fainted". He wasn't having a coughing attack. He wasn't in the midst of a tantrum. He was just getting ready to drink his bottle. I don't know...

But how do I relax? How do I go to bed at night with him in the other room? Those lifeless 2-3 minutes felt like an eternity. They will be etched in my mind forever. But I must say that everything (Autism included) has been put into perspective for me!

Birthday bloopers

Well, Baby T is no longer a baby. He is one year old! He had a fabulous birthday! He was such a happy guy and really seemed to enjoy all the attention. He greedily ate his spaghetti and made a mess with the frosting on his cake. We did have to break the cake open for him but once we did he devoured it as well. By the end of the meal he was head to toe frosting and spaghetti!

The only down side was his lingering cough. He has been having trouble eating solids because of the phlegm but I figured...it's his birthday! He has to eat with the big boys! So we start out with the camcorder aimed at him while he eats his spaghetti. After about 10 minutes I figure that is enough of him slurping noodles, so I turn it off.

Then he starts coughing. And these coughs are the heart stopping kind where you worry that he isn't going to get his breath back. So I am rubbing his back and trying to coax him through it. Finally he gets his breath and greedily reaches for more spaghetti. I wipe the tears and snot from his face (because he should only have birthday food on his face)! That is when I notice a noodle poking out his nostril. I try to get it and discover that it has not gone up the nose but is rather coming DOWN the nose! Ick!!!! And to make matters worse, he slurps it back up!

So we are all watching him in fascinated horror while he greedily continues to eat his spaghetti. It seems to me that a noodle in my nose might have slowed me down--but not T! What a trooper! So a few minutes later he breaks out in another cough. Fortunately, this time we were able to extract the noodle!

So I wonder, should I put the noodle in a baggie like his first hair cut clippings? I truly regret having turned off that camera!

Milestones and Obessions

Tomorrow T turns a year old! I can’t believe it! He is my baby! How can he be 1 already?

Although I am giddy with excitement to celebrate his birthday I have to admit that there has been this gray cloud hovering in the distance. You see, ever since we found out we were expecting a boy, my nerves have been vibrating. First I thought, “Yea! A baby. Well, 1 in 166. Okay I can handle that." Then I thought, “a boy. Yikes!" Then I thought, “a boy sibling to a boy on the spectrum. @*#$."

First I need to state that I am a compulsive worrier. I stress over everything. I don’t even need real issues to stress over! But damn, here I am with a real BIG issue. How am I going to keep from having my head explode?

So during my pregnancy, I convinced myself to relax and just enjoy these first months. You see, JP met all of his milestones his first year. He walked on cue, he babbled like he should. He even said, “Mommy” and “Daddy”. He was doing great…until his words faded, his interactions faded and he was “Autistic”. I told myself that I owed it to T to enjoy this first year and get to know the boy within. If that boy changes, than so be it, but I want to cherish this time.

And we really truly have! He is a beautiful happy boy with a smile glued on his face. He is calm and peaceful and a bit ornery. Grandma refers to him as Curious George because he always has that big goofy smile on his face! But how can he be a year old already!

I know that I need to find a way to control my anxiety? It can't be healthy for any of us if I start obsessing over him. Yet, I still find myself obsessing over where JP lost his skills. I look back at pictures and I see pretend play at 18 months. I always see smiles. But then, who takes pictures during a meltdown? JP babbled and had words. But when did he stop using them? When! I need to know! I swear that I can feel the stress growing and taking over my whole being. Will T continue to meet his developmental milestones or will he venture off on the path with his brother?

Either way, I know that he will be a remarkable young man and that he will be happy. I will see to that! I just really want my baby to not have to experience the frustrations and the confusions that his big brother experiences every waking moment. Please! Please let life be easier to him! PLEASE!

Mommy...I can't sleep!

How many couples have you heard arguing about their children still sleeping in their bed? You know, Dad is feeling like the odd man out because the 4 year-old is still occupying ¾ of the bed. Truth be told, I have secretly been jealous of those people.

My brother-in-law's family waged this war with our niece clear into grade school so we were committed to not do the co-sleeping thing. And although JP often had trouble sleeping, I just spent the time getting him back to sleep in his own bed. There were many times we slept in a “nest” on the floor because I couldn’t get him to sleep. I enjoyed the cuddle and just never considered bringing him back to our bed.

During the summer while I was pregnant with T, I spent a couple of mornings coaxing JP out of his bed to come “cuddle with Mommy”. He seemed to like that fine and even started coming in on his own once he woke up in the morning. However, he continued to wake up in the middle night and not seek us out. There were many nights that he would wake up crying hysterically and I have always thought it kind of sad that he would just sit on his bed sobbing and never think to come get me.

I got really nervous after T arrived and we couldn’t get the two different monitors to play nicely. I know some people thought I was being “overprotective” to still have a baby monitor in my 4 year old’s room but I just felt that it was necessary. But we just couldn’t figure out how to make it work and believe me—we tried! Finally I just had to acknowledge that it wasn’t possible to eavesdrop on his sleep (or lack of sleep) anymore! Of course I tried to train myself to listen for his cries but I kept telling myself that he is a big boy and would just have to learn to get us if he had a problem. He could do it, right?

Regretfully there was a time when my mother in law stayed with us. The next morning she commented on JP’s lack of sleep. I was horrified! He had been crying and I had not heard! Her room was next to his and she commented that she stayed away because she thought we were making him cry it out! I felt like the world's worst mom!

I am committed to figuring this out because like it or not there are times he will need to get up in the middle of the night. What if he gets sick? What if he has to go to the bathroom? What if he hears monsters in his closet? I have tried to make it a priority to get him to come find us. We have role-played. There are nightlights guiding his path to our room. I have even gone so far as to make it part of our bedtime routine. “What do you do if you wake up sad?” I ask every night. “Come and get Mommy and Daddy in their room” he now replies. But he has never come…until last Friday night!

He has a nasty cold and around 3am must have decided to come snuggle with Mommy!!! Needless to say, it was one of my best nights of sleep--ever!

Another plagarism case in the books

Last night while I was experiencing Mommy alone time (shopping at Walmart) the boys were all hanging out. JP wanted to go downstairs where all of his train track resides. This has been an obsession for over a month now and frankly I am tired of tracks EVERYWHERE! I finally got it all put away a few days ago and hoped that he would forget about them for awhile. It worked until last night.

Well, he had it all strung out and specifically sought out Dad and T who were upstairs. He has been awesome at asking us "to come play with him." So Dad and T dutifully followed to the play room. After mere minutes, T was dismantling the track to chew on. (T actually seems to enjoy doing this just to get JP riled up) Usually, JP just says, "No T No!" I've been actually orchestrating this trying to work on developing the words to express that he is playing with the said item and making suggestions that he could give T one of the items of interest to appease him. (Imagine that -- sharing!!)

Well, last night we saw a new twist. JP yelled quite passionately, "No! No! Look what you did! Make that baby go away! He should not be here!

Dad was quite impressed and thrilled with the new use of language until later when they listened to our recent library acquisition...The Cat in the Hat on CD. JP has been listening to it nonstop and apparantly has the expression and voice quality down for the passionate cries of the fish...

But our fish said, "No! No!
Make that cat go away!
Tell that Cat in the Hat
You do NOT want to play.
He should not be here.
He should not be about.
He should not be here
When your mother is out!"

It is wonderful to see him apply it appropriately even if it was a bit overly dramatic for the situation. Always good to see new phrases get filed away in his repertoire.

Where is "there"?

JP turns 5 next month. 5! Five is a big kid! How can that be? He is still my baby, isn’t he? I look at him and see the things he is learning and I am so proud. We identify a weakness and craft a plan. He practices and learns what he needs to know and he succeeds (usually). He is doing great! I am so proud and I feel like he is going to get there.

But where is “there”? Up until now, “there” has been kindergarten in a regular classroom with all the “regular” kids. With his higher than average academic skills it just feels like that is where he is supposed to be. His teachers this year tell me how well he is doing in the “integrated preschool”. His SLP told me that he was almost indistinguishable. She felt that an outsider looking into their classroom wouldn’t be able to pick out the child with autism.

But I was there for the Halloween party...

Yes, he lined up with the other children for the group picture. But, no, he did not smile and while all the other kids were excitedly chattering away he just stared into space.

Yes, he frosted his cupcake and even ate it all. But there were no sprinkles or other fancy decorations for his cupcake. Cupcakes have frosting. That is it. They don’t have pretzels stuck in them (even if he likes pretzels). Pretzels do not go with cupcakes.

Yes, he decorated his paper pumpkin and it even looked like a Jack-o-lantern. Jack-o-lanterns have two eyes, one nose and a mouth. They do not have purple bow ties. It doesn’t matter if there is one here in front of him because Jack-o-lanterns do not wear purple bow ties!

Yes, he took his turn in the games even though he was the first one out of musical chairs. I imagine that not all 4 year olds understand that game. Perhaps he wasn’t alone. There were a couple other kids that had trouble with the games. But then there are supposed to be 8 special education peers in this class of 17.

I am glad I went to the Halloween party but I saw a lot! I saw creativity, mischief and competition. There were ninja warriors battling jedi knights. One jack-o-lantern builder even used the little circles (designed for the pupils) as nostrils. And the two boys left in the musical chairs game intuitively knew how to team up and beat the one girl that was left. How did they know all that!

How do I teach him all of that? Can I teach him all of that? Can we get "there"? Is that where we are supposed to be?

What a treat

He did it! We had a great Halloween. He dutifully marched up to the door and did it step by step as we practiced. Of course there was always some sort of deviation. The first house had a frisky dog trying to get out. But we survived it!

Our biggest obstacle was that we don't like chocolate. It seems that everyone gives out chocolate. So when JP was given the choice to pick out his own candy from the bowl it took forever and a day for him to find a suitable option. Then there were the times he would grab several pieces. For awhile I felt like I was adding rules after every house. Be sure and only take one piece! You only reach for the candy if they don't put it in your pumpkin for you! You should always say thank you even if they give you chocolate.

My favorite moment was after he had learned the new rule for only taking one piece of candy. This homeowner apparently wanted to rid himself of candy and said, "take another". So JP turns back around and puts the original piece back in the bowl to "take another". It was really quite sweet. If only he listened that well for me. Had I told him to give me the candy back he would have given me a few choice words and some tears!

Another sweet memory will be his verbal closing to every transaction. He would say "thank you" to the candy giver. Then as we walked down the driveway he would say, "Oh, thank you Mommy! And my candy thanks you too!". It has to be a Pooh reference but I haven't placed it yet.

Anyway, Halloween was a success and not as haunting as in the past!