Sunday, September 26, 2010

Live Facebook chat with the author of Cowboy and Wills

No time to really blog much for the moment, it's been a crazy weekend of wonderful birthday insanity, but I do want to pass this info along to you readers!

Just a quick note that Monica Holloway, author of Cowboy & Wills will be holding a live video chat on the Cowboy & Wills Facebook page on Tuesday Sept 28th at 7:30pm EST.
First person with a question will win a 3 foot tall stuffed golden retriever, donated by Gregory's Toys in Encino.
Next 5 questions get signed copy of the book.

Tuesday, September 21, 2010

Six sets of ear tubes, and possibly an end to nose bleeds

This morning was one of those mornings that I spend lots of other mornings dreading. Nothing like having to be at the surgical center no later than 8am. I know you all want to hear a story...

The morning began wonderfully. I was bright eyed and bushytailed, and both children were incredibly enthusiastic to be woken up. We quickly and efficiently got dressed, and made it into the car with lots of time to spare. I dropped Sierra off at pre-school, where Jaymes charmed everyone with his wonderful behavior, then headed off to Winston, whistling cheerfully. Jaymes was just overjoyed to be heading off to places unknown, and fully understood the importance of not eating or drinking prior to his surgery. He was both pleasant and quiet on the car ride there. As always, traffic was nonexistant, and we found our way there with ease. Exactly on time, we skipped into the waiting room, where Jaymes and I chirped a happy "good morning!" to everyone there. The entire waiting room rose and applauded Jaymes arrival. In no time, we were ushered back into the pre-op area, where Jaymes danced and giggled with bliss. He was so very happy to see the nurses, doctors, and anesthesiologist. He was absolutely cooperative throughout the very short wait, and as he walked contentedly into the surgery room with a nurse, he blew kisses and smiled. The surgery itself was quick and perfect, and everyone involved was deeply impressed with Jaymes beautiful ear anatomy. When everything was finished, I met up with Jaymes in the recovery area. He was so serene and happy to be lying under a mountain of heated blankets, and made no effort to get up until he knew he was fully awake. He enjoyed a popsicle, and then had his IV removed with no fuss, and we skipped out to the parking lot, our hearts soaring with joy! The rest of the day was blissfully quiet, with Jaymes relaxing and giving me as much time as I needed to rest.

Ok, now that I've told you a story, how about we go over the way it REALLY went?

At 6:45 in the morning, my husband prodded me in an effort to wake me. I recall moaning loudly, throwing something at him, and burrowing under my pillow. He turned on the light, and tormented me into wakefulness. I staggered into the bathroom like a not-so-fresh zombie, and tried to wake myself up by splashing water on my face. Unfortunately, my aim was not too great, and I managed not only to splash ice cold water on my face, but also down the front of my shirt too. By the time I'd struggled into clean clothes, Jaymes had realized that daddy was not home, and come out of his room. I noticed this right as he was grabbing the box of Lucky Charms. It occurred to me at this point, that if Jaymes ate anything, they would cancel his surgery and I would have gotten up early for no real reason. With a shriek, I grabbed the box. Jaymes was not happy with me. There was much screaming about Lucky Charms. I was knocked awake by the horrific odor of the diaper dangling around Jaymes' waist, which I suppose was a blessing (being awake is good) despite the loss of all my nose hair due to the fumes. Once Jaymes was ready to go, I poked Sierra awake and got her dressed. She was annoyed with me, and wanted nothing to do with being awake so early.

Eventually I did manage to cram the children into the vehicle, about 10 minutes later than I had planned. Traffic was a nightmare, and by the time we got to Sierra's pre-school, we were even more behind. Jaymes, as always, pitched an enormous fit in the pre-school, horrifying both children and staff alike. Sierra was eager to join her class and pretend not to know us.

I got lost, as always, and made us even later for our appointment. Finally got there at 8:30. Jaymes was very upset when he saw where we were, and startled the ancient people in the waiting room with his bellowing. For the next 30 minutes he yelled that he wanted to go home, he was all done, etc. Finally make it back to the pre-op area, and the nurses are wonderful. They always try really hard to make things comfortable for the kids. Normally, Jaymes loves them. Not so much this time. Every time they asked him if he wanted something, he was very loudly say "NO." NO, he did not want a teddy bear. NO he did not want to watch a DVD. NO he did not want to ride in the wagon. NO, he did not want to wear his bracelet. I wore it instead. There was a bit of a hold up, so we had a pretty long wait. I think he went in for surgery around 11am. We were in the room right by an automatic door that was continually opening and closing. Every time it opened, Jaymes loudly ordered the doctors to shut the door. It bothered him a lot. The nurses decided giving Jaymes some meds to calm down might be wise, before the actually knocking-out. This backfired, as I thought it might. Jaymes doesn't react the right way to the stuff they give. It makes him more energetic, and it makes him super paranoid. He spent the rest of the time eyeing anyone who walked by as if they might jump at him with intent to kill at any time. When the doctor came over to talk to us, Jaymes let him know that he did not need to be seen, and would like to go home.

Once they got him back there, things went pretty quickly. He ended up having new tubes put in both ears. One ear had fluid, the other's hole had closed up and was getting toward having fluid. They also did decide to cauterize the nose vessel, which apparently was quite large. I really hope that means there will be no more nosebleeds.

I met up with Jaymes in recovery, where he was awake enough to be really upset that he couldn't sit up because of all the blankets on him. He was pretty loopy. He slept on me for awhile, then woke up enough to demand orange gatorade and an orange popsicle- both of which he greatly enjoyed. I was a little nervous, because last time he drank a bunch after surgery and vomited all over me, the exam room, the car... everywhere. Thankfully, he kept it all down today.

He was not a happy camper, in the car on the way home. He decided he would unhook his car seat harness, stand on the back seat, and wave to passing motorists. My orders to sit back down didn't do much of anything, so I had to pull over and harness him back up quickly. Went and got him a thing of french fries from Burger King, which pleased him, at least until we got home. He lost interest pretty quickly, and went about his favorite task, of destroying the house. Tried to get him to take a nap, but that was not happening.

Anyway, another set of ear tubes down. Jaymes always takes it pretty well. He does seem to have a little more pain than usual, he really cried when I put the drops in his poor little ears. But other than that, he seems to be back to normal. Hopefully cauterizing that big vessel in his nose will be helpful, neither Jaymes nor I can handle any more gushing nose bleeds!

So tomorrow, kiddos go back to school, and I go on preparing for Sierra's birthday party on Saturday. Praying it does not rain, so we can use the back yard and not the cramped kitchen like last year. Party is Saturday, and then Sunday I'm taking Sierra for a special day. she gets to choose where to eat lunch, then we'll go to Build A Bear and she can make whatever she wants, then ice cream. Jaymes will be with his respite worker, because I feel like Sisi really needs a day that is all about her, and not Jaymes. She's had it rough the last few months, with all his issues going on. She needs some special mommy and daddy time. It should be fun, and I sure do like birthday cake!

Tuesday, September 14, 2010

Tens steps forward, 11 steps back?

The couple months we had after Jaymes' hospitalization were really wonderful. We finally had a happy, calm, pleasant Jaymes. He was happy, we were happy, and we could really do things as a family again. I should have known that it probably would not stay like that!

I had actually meant to write this post up last night, but realized that in doing so, I'd be posting in frustration, and that the event would be funnier the next day than it was right then. I try to see some humor in everything, that is generally how I keep from losing what's left of my mind!

Most of yesterday was spent doing "have to do" stuff, rather than "want to do" stuff. Being exhausted from the Hunter Pace on Sunday (bareback challenge, can you say SORE muscles?!), I wanted to sleep in a bit. Sierra was not going to pre-school, so it would work out. Jason put Jaymes on the bus. At about 7am, I was peacefully dreaming about ninja cats serving me chocolate cake. The dream took a very odd turn when I was distracted by my cake by what I assumed was a very heavy cat without fur landing heavily on my chest. It also seemed to be talking to me. It took awhile for me to make out what it was saying.

"Can we watch Dora, mommy?"

Oh. So not a cat. A Sierra. Who couldn't wait to watch Dora. So much for that cake. Not sure why I have so many dreams involving cake. I imagine it has something to do with the whole dieting thing.

Anyway, the day was a thrilling one, consisting of much online course work- tests and essays. By the time I was done with that, it was time to clean up the house. Of course, the minute I'm looking at my horse forums online, Jason gets home. The timing always stinks- and makes it appear that all I do is sit online reading horse forums. Which obviously is not the case.

Jaymes got off the bus in a fairly jolly mood. He had a lot to say about school. Unfortunately, most of it was gibberish and I couldn't get enough real words out of him for it to make much sense. He started in the kindergarten class yesterday, for circle/centers/music. It's actually a little odd, he's always loved school, but this year he begs not to go back every day. I hope he settles in.

I wanted to eat lunch and let Sierra take a nap, so Jaymes P.A worker guy came and took him out to the playground. I met up with him (along with our dog, Midnight) later. We hung around about an hour, then it was time for Anthony to go home, so I told him I'd take Jaymes back home and not to worry about that. Bad move.

Jaymes had been bordering on explosion with Anthony, from what I saw... He needed a diaper change, and would not come down until both Anthony and I got after him. He screamed the whole way to the car, and was whacking Anthony with his jellyfish, which is a sign that normally would have sent me running for the car. For whatever reason (I blame the sun, clearly it killed off some brain cells!) I ignored it and changed him, then headed off back to the playground for the kids to play. Jaymes had gotten to where all he wanted to do was scout for new families. he'll approach someone, sit next to them, and try to make them kiss his jellyfish. Obviously not everyone appreciates his special brand of greeting, so I try to shoo him away when he does this.

Finally I decided it was time to go. Sierra accepted her playgroundless fate quickly, but Jaymes... Not so much. I tried to coax him out of the area, but that started a screaming fit that probably knocked the glass out of nearby vehicles. He picked up his jellyfish and flung it at someone as we walked away, and so I had to let go of him to pick it up. He bolted at that point, fairly gleefully, thinking he had managed to trick me good. To his credit, it IS pretty smart to toss something you know mommy won't leave, in an effort to get back to the area you did not want to leave.

I circled around the climbing thing he had scrambled up, getting a little more desperate with every scream directed down toward me. By now, of course, the entire playground population was staring at me. One very nice lady offered to hold the dog so I could climb up and get Jaymes. This seemed like a good idea. So, I gave them the dog, and began my slow, clumsy climb. Now, I am not in the best shape, and I still have some major issues with my back and hip from my injury. I'm sure the sight of me trying to haul myself up through an opening meant for children was deeply amusing to the bystanders. By the time I actually got to Jaymes, it occurred to me that I had not thought about how I would get down.

Jaymes solved my issue himself, by yanking out a hearing aid, separating the BTE piece from the earmold, and chucking them down down under the slide. So down I went, probably with smoke shooting out of my ears, to retrieve the hearing aid. Again, I climbed up, grabbed the boy, and clumsily climbed down praying I did not fall and land on him in the process. When I got to the ground, Jaymes threw one of his shoes, which Sierra ran to get for me.

I threw my screaming, squirming child over my shoulder, grabbed the dog's leash, and we headed across the part toward home. I was a little worried someone would call the police, thinking that the thrashing, bellowing little person hanging over my shoulder was being abducted, murdered, or otherwise assaulted. However, Jaymes kindly distracted me from police related nervousness by smacking me in the back of the head several times. The 5 minute walk through the park was more like a parade of crazy. I mean, picture it... Slightly chunky 25 year old with 38 pounds of angry kid hanging over one shoulder. Fists punching, legs flailing, teeth gnashing and slobbering. Shoes sent flying, balls of human hair (my human hair) being thrown into the air. And of course my face getting more and more purple as I struggled with my overwhelming desire to sell him on Ebay.

While I was pretty embarrassed, I wasn't all that upset until just before we got to the car. I'm ok with smacking, kicking, and attempted biting. But then he started scratching and pinching, and that really hurts a lot. He got the underside of my upper arm with his nails, and left me with some lovely long scratches and a lot of big black and blue marks. That and the hairpulling realllllly did not feel good. sierra was smart, and followed a distance behind, picking things up as they were shot into the air. She's such a helper! The dog looked like she wanted to leave with a different family. I do not blame her.

I'm glad I didn't write this last night, but having written it now, I can see that it still isn't all that funny. Give it a week, and it'll be hilarious, and the source of many, many jokes in very poor taste.

On the more serious side, I'm not too thrilled with the return of the aggression. I hate being kicked, hit, punched, bitten, spit on, and scratched. It's just not fun. Here's to hoping it will go away again.

Saturday, September 11, 2010

Easter Seals, I think I love you. also, a school update.

I know that in the past I have commented on the fact that Jaymes gets respite care hours through Easter Seals... Been getting that for the last couple years. Recently we were approved for personal assistance hours. 144 hours per three months. So that equals out to... 3 hours, 4 days a week. We met the gentleman who would be working with Jaymes, and we all really like him. He is a great guy, and he and Jaymes get along pretty well. He doesn't seem bothered by Jaymes meltdowns, and he's got a great sense of humor. Nice to have someone to talk to, I spend so much time by myself or with kids.

Anyway, I love this. Between Jaymes being at school and Sisi being at pre-school three days a week, I have time to do things! My house has stayed clean, because I have time to do it. My laundry has not piled up into the precarious mountain of death, because I have time to do it. My pasture has remained manure free, because I have time to do it. My school work, same thing. And I have time to ride Rocket at least a few times a week. That helps my brain out so so much. Yesterday I rode up past Piney Grove Elementary. Across the street is what will eventually be a little subdivision with big fancy houses. There's one house there now (which is so gorgeous I froth at the mouth with desire!) and then just a bunch of undeveloped land. Lots of great hills, for building up flabby pony muscles. On the way back I rode in the fields out there, and stopped to watch one of those sky writing planes. It was really need, although the skill of the pilot might be questionable, as I could not figure out what it was supposed to say. Saw some deer, had some very impression pony-spooks that involved sideways levitation... But a great ride. Feels so good to be able to ride more than once a week.

I have been told by friends that I seem much happier, less exhausted, and a little annoyingly perky. I guess that's a good thing!

As far as school goes, it looks like Jaymes will begin going out to the regular Kindergarten classroom on Monday. Very glad, I was a little worried that I'd have to fight for that again this year. I had a conversation with Jaymes' teacher, and asked that she drop the topic of potty training for now... But still got yet another note home about it, so I asked the principal to ask her to tone it down. I honestly shocked myself by mentioning it- I have not always been known for having much of a backbone. But Jaymes principal is a good person, and I like her a lot... Felt horribly bitchy to be complaining about it, but I do feel better having done so. My only regret is that, in a panic of actually voicing my concerns, I forgot most of what I had wanted to say. I think that I may have left the school thinking I just want Jaymes in diapers for life... And obviously, that's not what I meant to convey.

What I meant, when I asked that the potty training be dropped for the moment, was that the school focus on academics. I feel like if Jaymes is in underpants like the teacher suggested, he will constantly be wetting (or worse), thus interrupting academic time. And, if he is in underpants, what happens when he unexpectedly wets himself while he is in the regular kindergarten class? What normal kindergartener isn't going to laugh or tease? I know I would have, back then. He does not need to be any less "normal" than he is. I would rather Jaymes be in there, working on social skills and real teaching that will actually help him get somewhere besides Lowrance Middle School. I don't expect him to be mainstreamed, I don't expect him to be in the kindergarten class full time. I do expect the things that I fought for all year last year. I expect those things to happen. I don't want this teacher's opinion that because he is 6, he is ready for potty training, to interfere with this.

I would love for Jaymes to use the potty. I love Sierra using it. I would give that teacher a medal myself, if she managed it. But in my mind, when looking at potty training or academics... well, you all know where I stand.

Jaymes has a lot of people working with him. He has me, his dad, Mr. Anthony (the P.A. guy), three fabulous therapists, and an army of doctors. Many of us have been, and will continue to be, working on toileting skills. So I guess what I am trying to say is this: We are not ignoring the potty issue. It's being addressed in the way that I and the professional's feel is best. In the end, I'm Jaymes' mom, and I have the final say in this. It's not laziness- I doubt anyone who knows Jaymes and I would ever associate the word 'lazy' with us. My life revolves around giving Jaymes every opportunity to be a part of society, to give him a future outside a group home setting. The school has every right to question or suggest- but they need to remember that I know Jaymes best, and that above all, his best interests are closest to my heart.

Tuesday, September 7, 2010

Potty training dilemma

Jaymes has been in school a couple weeks now, so he's settling in pretty well to his routine and his new classroom. Unfortunately, seems like there is already some tension between myself and his new teacher. I had hoped we'd at least manage to go a month before I had to unleash my inner bitch... But it's getting close. I may be being irrational about this, maybe not. Hard to tell I guess, I'm pretty biased! Jason agrees with me, as do many of our friends... But of course that doesn't mean that I'm right, she's wrong, or vice versa.

The second week of school, I got a note in Jaymes backpack that (to me) had a very abrasive tone, essentially an order that I send Jaymes to school with Pulls Ups, because "he is more than ready to potty train." Now, the first issue here is that I don't particularly appreciate feeling like I'm being told what kind of diaper I can or cannot send my child in. It's actually fairly unusual to have one of Jaymes teachers use that sort of approach on me. Mrs. C never did that, even when we were discussing things we both felt strongly about, I always felt like I was being treated with the utmost respect, and that I was being talked to, not talked down to. That isn't the feeling I get now. I feel a bit like a child, being lectured. I really don't like that.

So yes, that was the less mature part of my irritation... On to the more logical piece of the problem. For one thing, I do not like Pulls Ups. Jaymes does not make any effort to make people aware that he's wet or dirty, and Pull ups do not absorb like diapers do. So Jaymes ends up with very painful, nasty rashes on his backside. Also, they leak. There's nothing like Jaymes coming home, getting off the bus with a leaky, overflowing diaper full of a combination of poo and urine. Generally that results in a bath, and a change of clothes.

The biggest issue has nothing to do with how mommy feels, or her dislike for Pull Ups. It has to do with the fact that I know my son. In what world is this child "more than ready" to potty train? I hate to be a witch here, but his teachers for the last 3 years have told me this at the start of each school year. Did they have any success? Of course not. Yes, there were a couple incidents where the timing was just right and Jaymes managed to direct his bodily fluids into whatever potty or potty chair they held him on... But those were few and far between.

We've tried for years to get him trained. Therapists have tried. Family members have tried. No one has managed it. Guess why? Because he is not ready. How do I know this? I know this child. I've been living with him for almost seven years.

But we mothers are always clueless, I suppose. Let's see what the World Wide Web has to say on the subject: tells us that parents should start potty training when their child is ready- not before. The signs that the child is ready are below.

  • Your child signals that his or her diaper is wet or soiled.
  • Your child seems interested in the potty chair or toilet.
  • Your child says that he or she would like to go to the potty.
  • Your child understands and follows basic instructions.
  • Your child feels uncomfortable if his or her diaper is wet or soiled.
  • Your child stays dry for periods of 2 hours or longer during the day.
  • Your child wakes up from naps with a dry diaper.
  • Your child can pull his or her pants down and then up again.
Let's see where Jaymes stands.

  • Jaymes does not signal that he needs a new diaper. If asked, he either says "NO" or runs away. He gets very upset if asked.
  • Jaymes hates the potty. Occasionally he will sit on it on his own, but only to complete the procedure he was taught at school- pants down, sit on potty, flush potty, pants up, wash hands. Any effort to keep him on the potty results in extreme distress most of the time.
  • Jaymes does understand and follow many basic directions.
  • Jaymes has no problem sitting in a wet or dirty diaper. He will actively try to keep from having it changed, and if not checked frequently, will sit in it until his bottom is raw. Diligence is very important for me.
  • Sometimes he stays dry for up to two hours. Sometimes not. It's very random, and definitely based more on how much he has had to drink during the day.
  • Jaymes wakes up from naps in a very wet, and often dirty diaper.
  • Jaymes can get his pants up and down without a problem.
Sooo.. Three out of eight. And those are assuming the child is typically developing. Mine is not. As the school is so fond of telling me, he has a very low IQ (not sure I agree with that one, mind you), and there is a whole long list of "can't do" items that are used against Jaymes every time I bring up letting him spend additional time outside of the EC classroom.

But maybe this list is just far out, and unreasonably holding back children who are clearly ready to potty train... Maybe another source will offer up a more realistic set of criteria.

Wow, this came from The American Academy of Pediatrics. Those folks know what they're talking about. Let's take a look at what they say about how to tell when you're child is ready to start potty training...

  • Your child stays dry at least 2 hours at a time during the day or is dry after naps.

  • Bowel movements become regular and predictable.

  • You can tell when your child is about to urinate or have a bowel movement.

  • Your child can follow simple instructions.

  • Your child can walk to and from the bathroom and help undress.

  • Your child seems uncomfortable with soiled diapers and wants to be changed.

  • Your child asks to use the toilet or potty chair.

  • Your child asks to wear "big-kid" underwear.

I don't even need to give specific answers to these. It's obvious. The biggest thing that the schools, therapists, and assorted people who think they know better than mom, is this....


Was that clear enough, to describe my feeling on this? I hope so. I know that Jaymes is six years old, and that he will be seven in December. I know that all "normal" nearly seven year olds are toilet trained. But my son is not typical, nor is he normal. It is unfair to push a milestone on a child who is not ready. Chronologically, yes, he should be ready. But, as all that testing tells us, developmentally, he is between two and four. His self help skills are among the most delayed skills.

If Jaymes were ready to train, would he get very upset when I check his diaper? would he run away, or scream and fight when I try to change a smelly diaper? Would he sit in it, as the nurses at the hospital's psych unit let him, until he ended up with a diaper rash so severe that he has scarring on his rear end?

No. If he were ready, he would tell me he needed a diaper change, or at the very least allow me to check. He would initiate potty time himself. And given the diligence of the staff at school, if he were ready, they'd have him trained by now.

So my dilemma is this... I explained to the teacher my feelings about Pull Ups. She did not seem too thrilled with my refusal to allow them to be used, but she suggested I send him in normal underwear instead. At the time I said I'd talk to Jason about it, and I have. I've talked to a lot of other parents about it, those with autistic kids and those with typically developing kids.

An issue I have with the underwear idea is the mess factor. And of course the humiliation factor. No, I don't know that Jaymes would feel any embarrassment about wetting himself (or worse.) But the fact that he might really eats at me as I think about this. I really don't feel like Jaymes is going to benefit from continually soiling underwear. I've tried that method, and while it worked fine for Sierra, it did not work for Jaymes. It also irritated his ridiculously sensitive skin, along with upsetting him and requiring more frequent bathing (which I'm fine with, but Jaymes doesn't like one bit.)

I try really hard not to be unreasonable. I try to go along with what the school folks want to try, and I am nearly always open to new ideas. But this I am not on board with, and I'm not comfortable about. And it is not that I "refuse to allow him to be potty trained," or that I want him in diapers. I would love to have him potty trained. I love having Sierra potty trained. It's wonderful. I'm not trying desperately to keep Jaymes in diapers. I hate them. I hate the smells, and the squirming and the assorted nastiness that come along with a six year old with stomach troubles who is still in diapers.

But in the end, I'm Jaymes' mom. Until someone proves me wrong, I'm going to assume that I know my kid well enough to know whether he is ready to do something or not. In my mind, it's obvious, and I feel like backing down and letting someone who has known my son all of two weeks bully me into pushing Jaymes when he is not ready to be pushed... Well, that's not the right thing to do, and it is not in the best interests of the child.

I am not sure how to handle this. Maybe I am being unreasonable. I don't think I am, but hey, you never know. Jason agrees with me. It's unusual for us to both be in complete agreement about this.