Moppi and Peepa.

When Jaysen was little, and trying to figure out this thing called language, I would try to get him to say certain words. When he tried to say "Grandma and Grandpa" it came out "Moppi and Poppy". Over a short period of time, "Poppy" morphed into "Peepa", and my parent's new monikers were born. Moppi and Peepa it was.

Let me tell you a little about them.

Peepa is the most wonderful man in the whole entire universe (possibly the whole galaxy, but the votes aren't tallied yet). He is the one who has been a stalwart support for me at times I feared my Lexapro was failing me. From first diagnosis, he has been a resource of research findings, and networking aficionado.

I think Peepa "gets it". He knows that when Jaysen is dysregulated, something needs to happen. He knows that certain behaviors lead up to a possible meltdown. He knows that the meltdowns were not because Jaysen needed a spanking, or because he was a bad kid, and most importantly, he realized that Jaysen had little control over them.

Peepa is the "asker of the questions" the "information seeker", the one who will "find that out". He's the one who will go with you into foreign situations, and ask the questions you were too scared to, or forgot to ask. He makes sure he understands.

Moppi has a heart of gold. She loves her grandsons so much, that she would do anything for them, despite the cost. Moppi desperately wants the best for everyone around her. She is the motivational speaker. She is the one filled with hope.

I don't think Moppi quite "gets it" yet. Moppi can be pretty high strung at times. She's still having a rough time accepting Jaysen's diagnosis, and often gets upset about it. She wants him to be able to take a magic pill and be "normal". She's getting better though- there was a time where she refused to read anything about Autism because it was "too painful". At least now she is able to accept information in small doses. Moppi and I go head-to-head quite a bit- she is a "cure-seeker", where I am a "make the most of what you're dealt and enjoy it" kind of person.

Moppi has difficulty recognizing when Jaysen is approaching overload. I have tried to explain over and over, that if he says he doesn't want you to do something (like take his picture right now), to please respect that. But she wants that picture, and figures she can try to trick him into letting her take it. Yeah- didn't work, did it, Mop? And when Jaysen does have a meltdown- she takes it personally.

But Moppi's great. She just worries too much. About everything. That's the yin and yang I suppose. My mom freaks out, and my dad tries to ground her. She absolutely adores baby Rylan. She really is a super grandmother. Moppi has helped me out in a lot of situations, and I know that she is absolutely there for me if I need it. 3am babysitter because I got a last minute ticket to an all night Loch Ness Monster vs. Sasquatch curling showdown?...she'd be there.

At the end of every day, I am so thankful for my parents. I think they need to be medicated at times...but they are so very important to me, and I love them bunches. I just hope that I am able to be there for my boys like they are for me.

Quirk.

My son is Quirky. To be honest, I think most of his quirks are awesome.

They not only set him apart from others, but they make us laugh. And when I say us, I mean Jaysen too.

I love when he wants something and is trying to be cute about it, he'll curl up the right side of his mouth and look out of the corner of his eye when he makes his request (think a cute little-boy Billy Idol sneer).

I love when he finds something so humorous that he can't talk because he's laughing so hard.

I love when he is quietly involved in intense play- and when he emerges, he shows up like the Band-aid Bandito.

I love that he talks with an accent of sorts, (kind of a mix between England, New York, and Canada?) and I don't know where he acquired it.

I think it's funny that he has to wear his Spongebob underwear backwards, so he can see Spongebob.

I love it when he doesn't let the expressive language disorder get in the way, and tries to explain something (you can see the wheels turning in his head as he stops to think what it is he wants to say).

I sometimes *cringe* love some of the echolalia. Every once in awhile he'll come up with something really funny- (example) The Price is Right: We were playing Jaysen's version of The Price is Right in the bathroom after his bath. Jaysen called me to "come on down". I stepped up to the counter, and out came a perfectly scripted execution of Bob Barker explaining to a contestant what they will be bidding on. I placed my bid, and Jaysen made the buzzer noise, indicating I was incorrect. He moved on to the "next" contestant, and in mid sentence, stopped himself, turned back to me, and said "you can go back to your seat, Mommy". I was rolling, considering we were in the bathroom and there was no "seat" from whence I came.

I love when he does things like The Frog Prince of Bel-Air, and each character has their own voice and mannerisms.

I think it's cute that he has to have his pillow facing a certain way before he can fall asleep.

I love that he's so kind to his brother(although he always wants Companion to feed Rylan so I can give him my full attention).

I feel proud when he corrects people's manners (even though that too, is a result of scripting).

I love that because of his amazing memory, he usually knows where the remote is.

I think it's cute that he has his videos organized by collections in his bedroom, but the rest of his room looks like a bad weave.

I love his attention to detail.

I love that he loves to laugh, and loves to make others laugh.

My son rocks. Quirks and all, he is awesome.

Stupid Is As Stupid Does.

I have to admit...sometimes it's nice having a child with language issues. My friends often tell stories about their kids picking up bad words from others, or their "potty mouths" creating embarrassing situations for them in public.

Jaysen has come a long way since the days of pure echolalia, but he is still noticeably behind his peers in language development. Jaysen isn't interested in age-appropriate things just yet (although I was so excited when he tried to 'spin a web' like Spiderman), for the most part, he still likes the baby videos. Not videos for little kids, I'm talking baby videos. He has, and cherishes, the whole Baby Einstein collection, and has moved onto the So Smart collection as well. Every once in awhile there will be a stand-in, like Mickey Mouse (Fantasia), Blue's Clues, or the occasional Scooby Doo, but as a whole, it's the baby stuff.

He knows they're for babies (because it says it right on the box), and he'll add in his own commentary "for babies...and Jaysen". I get flack for not trying to get rid of the tapes, or not replacing them with something more age-appropriate, but I honestly think the attraction is because they're non-threatening.

Think about it. Here is a kid that has sensory issues. Here is a tape that provides visual and auditory stimulation, at a level that he can handle. He likes the visuals because they're fun and transition into each other. He likes the music because it's simple, clean, and at a constant level. There's no storyline to follow, no dialogue to decipher...it's the perfect entertainment.

Anyway...I just got way off topic...language...right.
Jaysen still relies on echolalia for a good portion of his repertoire. The extent of his swearing has been "Awww barnacles" "tarter sauce" or if he's really mad, "fish-paste" a la Spongebob. Makes it difficult not to smile when your 5 year old is red in the face screaming "fish-paste" at you.

Well... Jaysen just recently learned the word "Stupid".
I don't know where he learned it (probably from me), or why he decided to pick that one up for his vocabulary arsenal- and although it's not all that bad of a word (unless it's applied to people), I was a little taken aback when I heard him say it.

I actually think he called me stupid first. I told him that it wasn't a nice word, and we don't say things like that because it can hurt people's feelings. Then he got mad. Really mad. Suddenly, everything was stupid. "Couch! You stupid!" "Chair! You stupid!" "Companion! You stupid!" "Stupid, stupid, stupid!" "STUUUUUPID!"

The more he said it, the less he seemed able to control it. He was crying as he was insulting everything's intelligence. I forgot about trying to get a lesson across, and went into rescue mode. I tried to help him calm down as best I could. Nothing was working. I could tell that he was tired, so I abandoned ship, and just carried him to bed. I laid with him and scratched his back. The crying eventually ceased.

Laying in Jaysen's bed, listening to his breathing, trying to figure out if I can make my escape to my own bed yet- I hear a soft little voice sweetly say, "Goodnight, Stupid".

*Sigh*

Boating Therapy.

My parents had a BBQ last night- not a huge crowd, but large enough to get Jaysen's dander up after awhile. My parents are also notorious for calling an event at 4:00p, and starting to heat up the grill somewhere around 5:00p. So Jaysen was getting pretty antsy by the time dinner was ready. He ate his hot dog (nothing else), and was ready to go home right after.

I decided to try to buy some time, and entice him with a boat ride in the inflatable raft my dad got for the communal pond off of their backyard. Jaysen of course said yes, he wanted to go for a ride.

Getting into the boat was interesting, but once entry was accomplished, Jaysen really enjoyed the boat ride. We looked at the trees and houses forming a fortress surrounding the border of the water, we checked out the "nucky" stuff floating in the green water, and tried to catch some ducks. Jaysen commented that Moppi and Peepa (my parents) got smaller the further out we went, until they were itty-bitty like "baby Moppi and Peepa". He thought that was funny. It was a blast.

As we just floated around the pond, I commented on how peaceful and relaxing it was on the water. Jaysen agreed, let out a big sigh, and said "I want to go to sleep". He turned around so he could lean back on the bow of the boat, and closed his eyes.

Jaysen's always been a water kid, but it usually means playtime for him. Despite my attempts to show him how soaking in the bathtub with a pillow and bubbles can be calming, he has always equated water with fun. Here he was, laying back, eyes closed...relaxing. It was moving for me to see him so calmed and serene.

He talked about the boat ride well after we got home. He gave me a play-by-play recap of what we did, what we saw, and how he liked to "go to sleep" on the boat. We will definitely be returning much more this summer. I just hope he doesn't ask for a pond for his birthday...

Preventative Measures.

There has been so much hype about possible causes of Autism...particularly vaccines. As a mom, I started doing research as soon as I found out I was pregnant again. The more research I did, the more confused I became. It seems everyone had an opinion, yet nobody was willing to advise me because they were afraid of liability. If you are standing behind your convictions 100%, why would liability be an issue? It's the Thimerosal, it's the number of vaccines, it's the other preservatives in the vaccines, it's genetics, it's because Mercury was in retrograde when you conceived...my head was spinning. Doctors said vaccinate, but they wouldn't tell you it's safe. Advocates said don't vaccinate, but they won't back it up either. Fanatics said don't ever vaccinate, and have my amalgam fillings removed because the baby could become Autistic if I kiss him (yes, really). Regardless of their stance, all camps always ended with the same closer "but it's your choice". I know it's my choice. And I'm trying to make the most educated choices I can, before I decide.

I have never tried to uncover where Jaysen's Autism originated. I've never tried to lay blame on anyone. I'm not looking for the magic elixir that will make him into a "real boy" (yes- I had been told once when Rylan was born that it must be a relief that he's a 'real boy'). Instead, I had decided to focus my energies on what I can do for Jaysen now. It's not important for me to know about the past- but it is important to me to know what I can do for Jaysen today, to help lay a foundation for him to grow from. The past is the past. You can't change it. You can't take back administered vaccines, you can't take back genetics, it just is what it is.

You can't rewrite history, but you can learn and become informed from it. Which is what I'm trying to do with Rylan. If by any chance, the vaccine theory is true- I feel it is my duty as a mom to try to make the best choices I can for him. Companion and I discussed vaccinations awhile back. We had decided to hold off on vaccinating for now, just to be safer.

Until I spoke to my cousin, who is a pediatrician. She admitted that since she is a pediatrician, she is an endorser of vaccines- but it's what she said after, that really stuck in my head.

"I'd rather have an Autistic child than a dead one."

Yep. I'd have to agree. So, Companion and I were once again back to square one. We finally really decided to go ahead with the scheduled vaccines, but to hold off on the "triple" vaccines (DPT, MMR), and have those administered separately. Break up the triple vaccine into three vaccines, and given on another encounter.

Is it the right decision? I don't know. I can say that this is what we've felt the most comfortable with. If Rylan does happen to have Autism as well- at least I'll know that I didn't just sit there and follow through on what was dictated to me. I went out, did research, and came to a decision that I thought was for the best. And I will love him with all of my heart, just like I do Jaysen. I am standing behind that 100%.

Way Outside Of My Comfort Zone.

I feel like a turd. No...I feel worse than that...

I feel like a big heap of unholy butt-sauce.

Last night's trip to the psychologist left me feeling very uneasy. This was the appointment where Doc wanted to see Jaysen frustrated. He wanted to observe Jaysen's naural coping skills for his frustration and anxiety, and from that we would form a plan on how to carry it from play, into "real life" situations. I understood the reasoning, but I didn't like it.

I had to set Jaysen off. On purpose. For no reason.

We started to play like we always do at Doc's. He suggested bowling. I insisted I bowl first, and kicked over the bowling pins before he got his turn to bowl. Jaysen got a little upset, stopped bowling, and went on to find something else to play with. I tried to redirect him to the bowling pins scattered about the floor, and told him he had to clean up my mess. He ignored me, making a Krabby Patty out of play food. I grabbed the Patty, took the hamburger part out of it, and told him that it was mine. He protested, and asked very nicely for it- I told him he could not have it. I then took his tape out of its box- put the tape in the play oven, and the box up on the windowsill.

Ooh- anxiety was setting in.

He was now intent on getting that patty from me. He started to get this half-wild half- anxious look in his eye. He gritted his teeth and started shaking. I wanted Doc to see this because I did not want to have to repeat it. My natural instinct, being Jaysen's mom, is: when I see the frustration and anxiety rising- I give him my full attention, try to calm him, and find out what is going on. Not to be the instigator, and then not comfort him. At that point, I was waaay out of my comfort zone.

On the way home, I talked to Jaysen about the visit. I told him I was sorry for being so mean at Doc's. I tried to explain that there were problems that came up in there, and Doc helped us deal with them. I told him that Doc was going to help teach us how to problem solve.

I don't think he understood, and I don't blame him. There was no reason why his mom was being mean all of the sudden. I was being horrible, making him feel dysregulated, and he didn't know why. He was being "good" and I was treating him like poo.

Ugh...I still feel 'ick' about it.

Grandpa's Hat

My Mom watches the boys while I'm at work, and my Dad comes over to take Jaysen to school. He used to have a ritual of walking around and around the flagpole, and reading the little plaque attached to the base of the flagpole.

He has recently created a new routine involving taking Grandpa's hat off and throwing it. Upon the first time doing it, apparently my Dad reacted in a silly manner, and *poof* a new routine was born.

In school, Jaysen's teacher had been working on poetry. She had the kids write poems of what they wanted, and in their own words. This was Jaysen's creation:

Grampe has a hat
I fro it on the grand.

(Grandpa has a hat, I throw it on the ground.)

Applause, my son. Well done.

Father's Day

I kind of feel like an ass...

Ex called Saturday night and wanted to take Jaysen to a BBQ at his girlfriend's parent's house for Fathers Day. I was coming home from Florida that day, and I wasn't sure what to say.

On one hand, it had been a week since I had seen my boys. I didn't know how Jaysen would react because I've never left him like that before. He's very clingy, and I thought he may need the rest of the day to transition back into life at home with mom again.

On the other hand, it was Fathers day, and Ex makes it a point to remind everyone that he has never had all of his kids together on Fathers Day- mainly because Ex's ex is a nut-job.

I asked Ex if I could call him once everything was settled, and if Jaysen seemed to be okay, then he could take him to the BBQ. He said that was fine.

I should've known, but he called later to tell me that he was already at the BBQ, and would see Jaysen sometime this week. I won't hold my breath.

Although this is the first time I've given second thought to him taking Jaysen somewhere, I often found it funny that Ex got all bent out of shape when he "didn't have his kids on Father's Day". Ex is not much of a father. Yet he wants the recognition of being one? I don't usually talk smack about him, but I can feel it bubbling up right now because he seemed perturbed with me for my hesitation.

He pays major child support for his first two children, so I do not ask for support- and he does not offer. He has come through for me on occasions where I needed help with major things like whopping dental bills for Jaysen, but there is no "support" happening. Ex was a recovering addict. He is currently drinking and druggin' again- which is sad that he puts that crap before supporting his son, but that's not what really gets candlewax in my butt-hair. On average, Ex comes to see Jaysen about once every couple of months. Personally, I wish he would either be in Jaysen's life, or out of it. This inbetween crap is... crap.

He hasn't had a car in...wow- I don't know how long...so he never spends alone time, father and son, with him. He usually brings the flavor-of-the-month girlfriend with him (which is fine- I really liked last month's flavor. She was a sweetheart.), but Jaysen doesn't want to spend time with them.

He has no idea what is going on with Jaysen. No idea what it costs financially, and emotionally, to raise him. He has no idea how to interact with him when he does his "quirky" things. He has no idea what is going on with school, the meetings, the therapies, etc... not because I don't tell him- but because he just does not get it. He listens, but does not understand. Which is sad because he's the one missing out on such an awesome kid.

So yes, you can be pissed at me that I thought it best for Jaysen to be at home while he regulated everything that was going on. Sorry, but my son comes before you.

Happy (Un)Father's Day, Ex.

Oh The Thinks You Can Think.

Okay- I made it back from Florida. Everyone is alive and well, and almost in the same shape as when I left. Rylan looks a little bigger and is sitting up unassisted now!

Jaysen and Companion came to the airport to pick me up. I have to admit I was a little worried. Jaysen was either going to excitedly burst out of the car to hug me, or he was going to kick my ass for leaving. I don't know who was more excited to see whom. Jaysen stayed in the car with a huge smile plastered on his face- kind of frozen there, like he wanted to be sure I was going to get in the car and go home with them. Once I did, he said "Hi mommy, I love you home-" and sheepishly nuzzled my arm. I was so happy to be back home. Companion had decorated the house with welcome home banners, streamers, and balloons. It was really cool.

Companion said that Jaysen was "an angel" the whole time I was gone. Rylan is teething, so he was a whole 'nuther story. Whenever Companion and Jaysen were playing, and Rylan started crying, Jaysen was super-good about stoping what they were doing, and letting Companion tend to the baby.

Jaysen also went to the Metropark. He got to ride on a boat, and the Captain of the boat let him steer, ring the bell, and honk the horn. Jaysen was Mr. Bigstuff.

The souvenirs were a big hit- especially the "Thing" T-shirts. I really thought the Sorcerer Mickey (from Fantasia) would be the big winner, since Jaysen's video of choice has been Fantasia lately, but being an avid Dr. Seuss fan, I saw these Thing 1 and Thing 2 shirts, and had to have them. Actually, I got 4 of them. Companion was Thing 2, I was Thing 2, Jaysen was Thing 3, and Rylan was Thing 4. When I presented the shirts to Jaysen, he immediately put his on. then he proceeded to make us all put on our shirts. Once we donned the shirts, Jaysen had the idea of referring to everyone by their "Thing" numbers. this took a minute to catch on to. Here's how it went in a nutshell:

"Do you want to play Sorry, Thing 2"?

"I'd love to Jaysen, let me grab a coffee first".

"Say 'yes, Thing 3'."

"Huh? Oh- yes, Thing 3, I'd love to play Sorry".

"Okay Thing 2".

"Does Thing 1 going to play"?

"I think Companion is in the garage. You can ask him if he wants to play".

"Not Companion! Thing 1"!

"Oh- sorry. Thing 1 is in the garage".

"Thing 4 is still sleeping"?

"Yes Sweetie, Thing 4 is still sleeping".

"No! Thing 3"!

"Right. Yes Thing 3, Thing 4 is still sleeping".

Good gracious. By the time I had it down who was which Thing, and what I was supposed to say...I was ready for bed. After our game of Sorry and a bath, Jaysen wanted to wear his Thing shirt to bed. He forgot about it eventually, but it was the first thing he put on this morning when he woke up.

I can almost bet that I'll be changing into mine when I get home from work...

Nerves...

I'm nervous.

In a few days, I leave for Florida. My work is sending me to a training session, and at the end of training, I have to take a certification exam. Am I nervous about the exam? You bet. But what am I most nervous about? I'll be away from the boys for almost a week.

I am pretty sure Companion can handle both boys- it will be difficult, but he has his mom coming down to help for a day, and my parents are just around the corner if he needs them.

Jaysen and I have not been apart for more than one night at a time. He'll most definitely be anxious- if I go out for the night, I'll find him asleep on the chair in the living room when I get home because he was trying to wait up for me.

I am going to miss them like crazy. I know I'll be worried sick. Did Companion remember to give Jaysen his med? Was it the right dose? Will Jaysen give him a super-horrific time because I'm not there? Is he going to know when Jaysen's had enough? Is Jaysen going to know when Companion's had enough?

I can't think about things like that now- I have to concentrate and put my energy toward this exam. It's a 5 hour exam. Ugh. I thought I was done with this stuff. Apparently not. Well, this is all for the betterment of my family, so I'm going to give it my best shot. Even if I feel like I'm drowning.

Glub.

Na-ne-na-ne-boo-boo.

I often think about Jaysen growing up. Right now, he's still in Kindergarten- so he's not too different from his peers...but what about in the fall when he starts first grade? When he's expected to attend a full day of school? When he's expected to listen to the teacher, and participate in class? When he's supposed to do actual homework that will challenge him? When he's expected to perform?

All of these pending expectations send my anxiety to a whole new level- but nothing like the thought of...ohmigod...childhood teasing.

Let's face it- everyone gets teased, and kids can be cruel. This I know. It happens to everyone. It happens to Jaysen at times, and he doesn't realize that he's being made fun of.

As a child, I was mercilessly teased about my big nose and flat chest. Fortunately, I was a late bloomer, and did in fact receive the much anticipated breasts, and thanks to my parents, also received a much coveted nose job.

I'm mentally preparing myself for "the talk" about teasing, and trying to straighten out in my head, what I will say to Jaysen. I know that "if someone calls you 'retard' or 'stupid', it's okay to molly-whop them in the eye" is not good parenting, but it's my instinctual reaction.

I'm going to have to have the "why people are different" discussion, and i think I have a fairly good handle on that one. I'm struggling with the teasing. When I was teased, I would spend hours at home crying my eyeballs out. It hurt more deeply than anyone could imagine. I wanted friends so badly, and couldn't understand why my "friends" would hurt me so badly like that. the thought of Jaysen hurting like that, and crying because he doesn't understand why people can be so mean, just tears me apart. There is a difference between teasing that "builds character" and teasing that just cuts to the core of your psyche.

Some people may think I'm jumping the gun on this one, but the teasing I endured created some pretty hefty emotional scars that carried into my adult life as well. My parents gave me their best guidance of "don't listen to them, you're beautiful, they're just being mean, you don't need friends like that"- but I did. I did need friends. And so does Jaysen. I'm hoping he will find a friend who will help him stick up for himself, and help him brush things off. I will do what I can as a parent, but he also needs someone with him who's in the thick of it. Someone who can address things at the moment they're happening. Someone to intervene and reassure him, to get him back on track, before he's had all day to think about it and feel like a worthless pile of poo by the time he gets home. I just don't want him to think there's something wrong with him- that he's not a whole person, and needs to be fixed.

'Cuz I just might have to buy a new pair of combat boots strictly for kickin' butt.

Veggin' Out

Not counting baby food (because really...they open, and you just shove in whatever it is you want them to have), Jaysen has never- and I mean never- eaten a fruit or vegetable. His pediatrician tried to reassure me that he is following the typical age-appropriate diet of pizza, chicken nuggets, mac-n-cheese, and the occasional hot dog, and I shouldn't worry.

He's five now. He needs to be eating better foods, and following a better dietary routine. Yes, I am aware that quite a bit of this is my own fault, but I'm still figuring out this sensory stuff too.

So, we tried a sticker chart. Jaysen would get a coveted video tape if he ate 5 bites of a fruit or vegetable (he chose it to be apple- I made a mental note to next time write fruit and vegetable). I explained that he could take as long or as many days as he wanted, but he wouldn't get the video until all 5 squares had a sticker in them.

Day one: A successful bite of apple with much apprehension and a little gagging.
Day two: Another successful bite of apple, less apprehension, still gagging.
Day three: Yet another success. I decided to up the ante and make the "bite" a "piece".
Day four: One slice of apple eaten in about 10 minutes. Lots of complaining.
Day five: One slice of apple eaten in about 1 minute. Big smiles and "I did it"!

(It's extremely difficult watching your child having such a hard time with eating certain foods. He was trying so hard- giving such a valiant effort, yet he truly cannot handle the textures. His choking and gagging is not drama. It's for real. As a mom, I have to think about what's right for my son. Yes, he needs to eat good foods, but am I torturing him by putting him through this? Is this even helping him become more tolerant of different textures? Is there a better way? Because right now, I feel like the "Meanest Mom in America" for putting him through this. I offered him baby food, but he won't eat it because "it's for babies". He likes to juice things in the juicer, but won't drink it because it doesn't "look right".)

The next chart had 6 squares for fruits and vegetables. He choked down 2 pieces of apple and 3 grapes. I extolled him, and told him that all he had to do was eat one vegetable and the tape was his. He said, "*groan* maybe tomorrow". That was fine with me- I didn't want to push him. He did eat a small carrot the next night.

The day after that, Jaysen decided he wanted to do another sticker chart for another video. This time the deal was: Three fruits, one milk, and a vegetable.

The result?

The whole chart was completed that night. Hmm...this kid has got some serious motivation. He complained, gagged, and choked, but he didn't want to give up. He wanted that video. And he got it. Now my dilemma is- how can I get him to add these offending foods to his daily diet. He's willing to do it for incentives, but he wants to knock 'em all out of the way at once. If I could just get him to spread it out throughout the course of a day...it will take some planning, but I'll figure something out.