Wednesday, November 24, 2010

The obligatory Thanksgiving post

Every year I like to force myself to look past all the stupid little stresses in my life and think about the things that I am grateful for. Sometimes that's hard to do, especially when being licked by an almost seven year old, while running back and forth from the bathroom puking as a result of last night's birthday chicken wings. But, I will now overlook the extreme nausea and licking to stop being an ungrateful cretin.

I am so grateful for Jaymes and Sierra. Jaymes has taught me so much, sparked so much interesting conversation, driven me to grow a spine (slowly, vertebra by vertebra), found me some awesome friends, and kept me on my toes. In the nearly seven years he's been around, Jaymes has totally changed who I am and how I function in life. For years, I struggled horribly with being shy and spineless. There was a point in time when I could not go into stores alone, I could not talk on the phone, I could not cross a street by myself if cars were stopped and I thought they were looking at me. While I still battle my chicken-like quirks, I have learned to suck up and do things because I have to. I've learned to fight like a monkey on steroids (chasing an alligator with a mouthful of bananas) for what Jaymes needs.

Sierra has been my little buddy, my little helper, and the source of some much needed "normalcy." It is so cool to have a real conversation with a four year old. When Jaymes was four, he didn't even babble. She amazes me every day with the things she learns. She picks up things in minutes that we've struggled to teach Jaymes over years. She helps me around the house, and she tolerates my unique personality. She is willing to play zombies with me, staggering around croaking out "braiiiiiiinnsssss!"

I am grateful for my friends, most of whom I met through my awesome riding buddy, Dianne. Thanks to Dianne, I have the most amazing bunch of horsie friends and I've gotten to take part in lots of hunter paces at Yadkin Valley Hounds. I have had a LOT of fun in the last year or two, finally getting to really ride and really get away from the boring roadways I'm stuck with since I do not have a trailer to go places.

All my friends are awesome. They're all here for me. I can call and rant, or whine, or made bizarre jokes and I know I won't be judged. I can dress my pony up in a Santa hat, Xmas lights, jinglebells, and a red bow in his tail and whike I will certainly be laughed at, everybody accepts it because they know it makes me happy.

I am grateful for my precious pony, Rocket, who has given me back my confidence and gives me regular "therapy" in the form of hugs, cookie theft, trail rides, and blue ribbons. I love that he is rock solid, that he will not do stupid stuff on the trail or on the roads. He watches out for me, and he is so careful. I can trust him, even if something scares me (like steep, muddy downhill treks), because I know he is keeping me safe.

I'm grateful for my family, even though some of them have some crazy drama going on in their lives, like my poor sister.

I am grateful for the opportunities that I've gotten through this blog, all the people I've "met" and all the great books and products I have gotten to check out and review.

And last, but definitely not least, I am grateful to all of you readers. It's really cool to know that at least a few people actually care what I have to say, and all your comments and emails really brighten up each day!

I hope you all have a fantastic, delicious, non-vomiting Thanksgiving. Ok, mostly the non-vomiting part was for me, but the rest of it still stands!

Thursday, November 18, 2010

Time for the happy dance!

Jaymes is doing really, really well in general. I love it. Yesterday we spent our afternoon making Jello Jigglers until it was time to get Sierra from pre-school. Jaymes poured the water into the bowl, pushed the microwave buttons, and when the water was hot enough, he opened all the Jello packets and poured them in himself. Then he stirred. He did most of it by himself. I poured it into the dish to go in the fridge and solidify, and Jaymes held the fridge door open for me. He did a great job, and the Jigglers are really tasty.

Jaymes has been talking, more and more each day. Not just talking, but using long strings of words. Last night he really impressed me at dinner. He'd scarfed down his entire dinner, and upon seeing there was no more food, turned around and asked me "may have some chips please?"

I was floored. He is so smart. I did not think he could ask so politely for something- especially without being prompted.

Jaymes is in the Christmas spirit, for sure. Yesterday he took his rainbow lights out to his little play house in the back yard, grabbed an extension cord, and strung the lights along his roof like any home owner would. He did a good job.

He is loving his personal assistant worker, when the guy pulls up Jaymes goes flying out of the house with a loud cry of "MR. JAYYYYY! HIIIII!" good to know they get along so well!

Anyway, I'm pressed for time today, but wanted to share how positive I'm feeling about Jaymes lately.

Thursday, November 11, 2010

Christmas time is here...

In Jaymes' mind, anyway. The stores, namely Jaymes' beloved Target, put out their Christmas stuff the day after Halloween. On one hand, I'm glad the Halloween stuff is gone, because Jaymes was obsessed with that section to the point of it being a nightmare to take him there. He'd desperately try to bolt toward the section with the lights. They had pumpkin lights, spiders, skulls, and eyes. I think maybe bats too. I took pity on Jaymes, not once, but twice and stupidly bought him a set of spider lights, then a set of the pumpkin ones. The spiders lasted about a week before they stopped working. He still has them strung up in the back yard, doesn't care that they no longer work. The pumpkins lasted a few days. Like, maybe three. Then one day I found them, all the pumpkins yanked off and the light bulbs yanked and put into one of the empty plastic pumpkin shells. Apparently he likes to take things apart. No more lights.

Christmas presents a similar problem. The stores have large sections devoted entirely to Christmas trees and decorations. It's like taking a dieter to a bakery. He loves Christmas so much. The lights make him happy, the music makes him happy, he adores Santa, and he knows he'll get presents.

Our last trip to Target was an interesting one. Jaymes was fine until he saw the Christmas section. Then he bolted, and I chased after him, grabbing first one, then another delicate ornament and praying we didn't break anything. Finally got him calmed down enough to look around, with minimal grabbing and lots of great talking, so we looked at the lit up reindeer and the trees. Jaymes likes the tallest trees, with rainbow lights. He has made this incredibly clear. And just in case I forget, he's always happy to remind me.

Soon I guess we'll put up the rainbow lights out on our fence. Seeing those lights really makes Jaymes' day. As a result, we kept them up last year well into March. I always feel guilty taking them down.

Jaymes has actually been doing really well. He is not hitting or pinching any more, the worst he'll do is "sting" someone really hard with his jellyfish. I much prefer this! While his behavior and speech have been really improving, he seems like he's developing more and more of those little autistic quirks. Some of them are a little aggravating, but tolerable, like the weird noises. He sounds like a pug with a head cold, it's this combination of throat clearing and snuffling through his nose. The random public squeals and squeaks continue, not a big fan of those, and people stare at us like we're pushing a komodo dragon around in the grocery cart, though I've never been too bugged by that.

The troublesome stuff, however, is definitely a problem. Spit related trouble. Yuck. He's always done the spit wiping (spit on hand, wipe it across face) to some degree, and that portion of it has not been bad at all in a long time. But now there are new things, and they are definitely not socially acceptable. He'll collect up saliva in his mouth, then when someone (like the speech therapist) asks something of him, he'll spit it out into an enormous puddle on the table, floor, or book being read to him. He also tries to lick random people. I'm not squeamish at all, but even I don't really like having giant, hot Jaymes tongue slurping my arm. Yuck! I know the therapists and random people in public do not want to be slurped, so this one we're dealing with pretty strictly. Trying to make him understand that spit stays in his mouth, and not on the floor. We've been making him wipe it up, as suggested by a couple different therapists, but he does not seem to mind that at all, so maybe I need to think up a better consequence for spitting. I'm thinking it might work to use Jelly the jellyfish for this. Just like Jaymes stopped hitting and started using Jelly to "sting" (it doesn't hurt! Hooray!), I wonder if I can talk him into not licking people, but letting Jelly lick them. I know that is kind of adding another behavior, and that people are not going to want to have his Jelly rubbed on them, but it's at least better than being licked, right?

Not much planned for the week... Next Thursday we'll be taking Rocket up to the school for Science Night, should be fun. I've always wanted to volunteer, but can't in the classroom and have always felt really uncomfortable thinking about helping out in the office or something, because I feel like I'm always complaining to the school folks about things, and you all know about our IEP meetings... I don't want to go in and help if it's going to be awkward. I'm probably seriously over thinking this one, the office gals are really friendly to me, and they're very good conversation! But, I'm comfortable volunteering this way, and it'll be neat to let kids who have never seen a real horse in person get some petting and treat feeding in. I firmly believe that everyone can benefit from horse time! It's better than therapy.

My birthday is on the 23rd, and I'll be celebrating it by taking Jaymes to Duke for his genetics appt (yay, joy, woo), driving 2 hours each way, and then my mother in law will be coming that evening. Will be an interesting birthday. I'm starting to think I should just stop acknowledging bithdays, and stay 25 for the rest of my life. Anyway, it'll be fun having Jason's mom visit. While she drives me nuts some of the time, she's actually pretty cool. So we'll do our Thanksgiving thing, then do the Black Friday shopping for gifts (she lets Jason and I just pick out our Xmas gifts) for the kiddos for Christmas. They're only staying a couple days, I guess. We're planning to get that IXL game system thing for Jaymes for Christmas, he plays with the demo one at Target all the time and loves it, so it should be a hit.

Monday, November 1, 2010


I'm sure most of you have already seen the article and video about the "crazy bus dad," but I wanted to share my feelings on the situation. If you don't have a clue what I'm talking about, click here for the article and video and then return to my post.

This kind of situation is one we can all relate to, especially those of us with special needs children. We've all gone through bad situations where bullies at school (or out in the world) target our kiddos because they're different, and because they are easy targets. I doubt many of us have stormed a school bus and blasted kids and bus driver the way this gentleman did... But I know that at least I have certainly wanted to.

There is nothing so heart wrenching, frustrating, and infuriating as knowing your child is being bullied because he is different, and knowing that school staff are aware of the issue and yet nothing is done to stop it. We have been lucky thus far, that due to Jaymes' age the bullying comes in the form of "haha, you wear diapers," or "what's wrong with you? Why don't you talk to me? Why is your blanket pink?" Younger kid bullying isn't as overtly cruel as with middle and high school bullying... But it still makes me see red. Jaymes is lucky, in a way, that he doesn't really comprehend (and even if he did, he wouldn't pay attention long enough to get the message!) the things people around him say. He just wanders off, happy as always. It breaks my heart though, and I really worry about school and bus time- times with limited adult attention because the kids greatly outnumber the adults and it's simply impossible for staff to catch every little comment. At least the child in question in the article (a middle school girl with CP) was able to tell her dad about the bullying. Jaymes can't tell me if something is happening to him, if he's being bullied or teased, or even (God forbid) an adult touched him inappropriately or something.

So in my own way, I really sympathize. I'm not sure that people without a special needs kiddo can fully appreciate why the dad's reaction was the way it was. I understand it, and the things he's said are things I've said silently in my head a couple of times. I don't approve of his actions, but I get it and I can't blame him.

I hope he scared the piss out of those evil little bullies, I really do. I don't expect that it taught them a damn thing, and I'm sure they will continue to prey on those kids who are easiest to target. It would be great if this whole situation will alert the parents to the fact that they need to re-think their parenting and teach the little bastards some decency. Again, I wouldn't count on it, but maybe.

I think those bullies deserved exactly what they got (and more, IMO), and wonder how it felt to them to be bullied and made to feel helpless, and if they'll learn a thing. The thing that I hate about this is that in the end, the bullies come out looking like victims. Unfortunately, dad screwed himself by storming onto the bus and screaming obscenities in front of minors, not only the bullies but innocent kids who were just riding the bus on home.

Again, I understand why he did what he did. I feel terrible for him and for his daughter. It's really terrible. But regardless of why, it is never ever ok for an adult to get on a school bus full of children, curse at them, and threaten them with physical violence. It is just not ok. There are alternatives. He could have raised an almighty fuss at the school. He could have spent a few days going up and chain of command, until he got to someone who would seriously fix the problem. He could have pulled the child out of the school and either waited for things to settle and resolve or find another school. He could even have contacted the media to make the community aware that at such-and-such school, staff and bus drivers are allowing bullying of a disabled child. There are legal, effective ways to fight back. All he accomplished in doing what he did (as much as the bullies deserved to get their asses handed to them) is making the bullies look like the bullied, and scaring the daylights out of a bunch of innocent kiddos sitting on their school bus. As soon as we as parents of disabled kids begin responding to things like this with anger, threats, and fury, we lose the battle.

I do hope the transportation department for the school district immediately began looking through their tapes, to see whether the bullying (and you know it was) was actually happening. The bus driver should have done something, but anyone who has been reading my blog long knows, I'm no stranger to bus driver stupidity. Remember the time the driver almost left Jaymes alone in the bus, door open, on a major road at a high school? Or the time they forgot to bring him home? Or the time the driver failed to notice (sitting directly behind her, so that she could see him in the rearview in case he caused a problem) a serious, gushing nosebleed that left puddles on him and on the bus seats, and probably the kids next to him?

I hope this father does not get jail time. His daughter needs him, and he isn't a criminal. He acted wrongly, out of rage and frustration, but all he was trying to do was protect his little girl.

I do not look forward to when Jaymes is in middle school. Not at all. I don't want to even think about the tormenting that bullies will do. I was "normal" in high school, but I was tormented mercilessly. The end of middle school and all of high school were awful for me. I remember coming home so distraught I just wanted to die. I don't ever want Jaymes (or Sierra) to feel that way.

Schools need to get with the program and stop allowing this kind of thing to happen.

(Insert tangent here, where's my soap box?"

So many of these schools (ask me how I know...) love to slap a label on our kids and stick them in a self contained classroom away from the regular education population. In separating the "normal" from the "special" children, the schools are sending a message to their students. What they need to be doing is exposing their students to kids of all abilities, and teach tolerance.

The world can be a very ugly place sometimes. My thoughts are with "crazy bus dad" and his family. I'm on their side.