Thursday, December 31, 2009

Is this overly ambitious?


Every year around this time (well duh, it's New Years Eve) I start thinking about New Years resolutions. Looking back over the past few years, it would seem my various resolutions either failed completely, or only lasted a very short while. I've done all the typical stuff: Lose some weight, exercise more, be a better (house)wife, blah blah blah. I've found that I have almost no actual desire to really stick to these goals, however, which probably explains why they never seem to work out. On the plus side, at least I'm not a rare case of Resolution-itis. The vast majority of us make these ridiculous goals that we know perfectly well we won't keep.

So in keeping with tradition, I'm going to say that I do plan to try and lose at least some weight. I will try to walk more, but it probably will only happen on days that my leg and hip aren't hurting. We'll certainly be eating better, I finally bit the bullet and switched from regular "everything" (yogurt, sour cream, cookies, etc) to fat free "everything." Except for milk. Can't bring myself to drink the blueish watery ick that is skim milk. Sorry, I like my 2%. That's better than a few years ago, though, when I only drank whole milk. I still prefer whole milk, but I have been very successful in changing "down" to 2%. I also plan to be a better housekeeper (the way Jason likes, anyway, I think my way is just fine, but whatever!) and maybe work on having more of a social life.

That said, I have a lot of what I consider "real" resolutions for 2010. Except that I'm not sure they really count, because they are all things I have been doing, working on, or working toward. But hey, a set of resolutions... is a resolution. Right?

My resolutions are mostly Jaymes related, with a couple of Amber related ones tossed in for good measure. Here they are, neatly presented in no particular order of importance, for your viewing pleasure. Because clearly, this is information on a random internet stranger (emphasis on the strange) that is VITAL to your life. Or something like that.

  • I would like to learn more about Jaymes' hearing loss, and hearing loss in general. I'm woefully uninformed in this department, having just recently found out Jaymes had any hearing loss!

  • I will continue to try and get to the bottom of Jaymes' eczema, through re-evaluations with Immunology and Allergy specialist up at Baptist, and with help from Dermatology, also at Baptist. Jaymes ENT also said that if Baptist doesn't pan out, that the Dermatology department up at Duke is excellent, and they might have some more ideas for poor, itchy, scaly Jaymes.

  • More IEP meetings. Maybe some progress. You never know, it could happen. Note to self: Never attend an IEP meeting when you're to sick to argue important points. Our last one was a wash, because I was so sick I barely opened my mouth, forgot some of my main points, and was too sick to continue debating various things. On the plus side, Jaymes' AU classroom teacher has really been helpful, and she has taught Jaymes so much. I feel like she's at least somewhat understanding where I'm coming from, and why I spend so much time pushing for Jaymes to get more class time with his non-disabled peers. I wish the regular ed teacher he goes with was more interested in including Jaymes, but we're all human, and we're not necessarily going to agree, I guess.

  • I need, not just want, need to help Jaymes get over this spitting thing he's been doing for the last month. It's gotten worse and worse, and it seems to be a compulsive thing, he doesn't seem able to control it. He spits on his hand (or, if he can't, on his arm, a toy, my arm, whatever) then spreads the saliva around all over his face. He gets it in his eyes, and then he screams because it burns, and it's making his face one nasty, slimy, wet, rashy mess. Also, anyone sitting near him when he's doing it is liable to get splattered, and nobody likes that. Especially not strangers who are unlucky enough to have to sit within range.
  • In the "Amber goals" department, I certainly hope to get all of my current medical issues sorted out, although I have been incredibly lucky to have really gotten wonderful benefit from the (non-narcotic) meds the Neurologist gave me. Apparently, the stuff doesn't usually work as well for others as it has for me, and I'm very fortunate. It's also only $4 a bottle. Hooray!
  • I want to ride more. I don't have a horse right now, of course, after the untimely death of my lovely Lucy girl, but I have several friends with horses who let me come ride- so I need to do that! I think that will help with the whole weight loss thing too.
  • This one is a big one, because I seem to be a drama magnet. I plan to avoid, ignore, or run away as fast as I can, from everything drama-causing. No more friend drama, no more internet forum drama, no school drama, no family drama. I'm going to stop responding to things that are just waiting to start another round of bullshit. I need some more positivity in my life.
  • I'm going to be more positive, less pessimistic. This will be hard, I'm a pessimist at heart, and always have been. Mostly because it seems that we and people around us get hit with more than our fair share of what can only be described as crap. I wonder if this is because most of my friends have autistic or otherwise special needs kids. LOL. Anyway, this goal applies to Jaymes too. No more focusing on the bad behaviors and the things we can't change, or don't like. No more accepting others treating him like he's a danger to them, or a spoiled brat. I'm going to focus on all the wonderful work Jaymes has done, both at home and in therapies and I'm going to celebrate every little bit of progress we make.
  • This last one is one we've been working hard on for awhile, but that we need to continue, and improve on. Jason and I are terrible money managers. That's a good part of why we keep finding ourselves in bad situations, financially. Over the last 5 years, I think the banks must have made a small fortune off our overdraft fees. We've started writing everything in a notebook that is updated every time we write a check, spend cash, or use a debit card. We've still had 2-3 overdrafts in the last 6 months, but that is a huge improvement on the previous 2-3 per WEEK. We're getting better. Wish they'd taught these things in school though, nobody ever taught either one of us to manage money and accounts right, so we're teaching ourselves. Here's to hoping for an overdraft-free 2010.
So this may be too much, and it may be too ambitious. It may all really just boil down to a couple main points. Hmm, I could have saved myself some time, and just said it like this:

  • I want to live healthier
  • I want to be a better advocate for Jaymes
  • I want to be a better parent (because even the best have room for improvement, so I have a LOT of room for improvement, right?!)
  • I want to rise above the petty, stressful BS that people in my life sling at me and that I feed right into.
Now why didn't I just say that in the first place? Oh well, it wouldn't have made for a very interesting post.

Happy new year, everybody. Here's to hoping it doesn't suck as bad as 2009 did. Here's to hoping we can all change the way we do things to make it a great year. Now, I'm off to go guzzle down some sparkling grape juice and BBQ chicken!

Tuesday, December 29, 2009

DIY Hearing Aids

Pictures before post, because I know that's what you all want from me!

Jaymes with his new train- see the glee? and the drool. But the GLEE!

MMMMM Candy! all this, for MEEE?

We love the truck!

The car ride to FL, Jaymes got his elbow stuck inside his beloved Blue Cup. Yes, he cuddles and loves on a blue cup. And yes, my kid got his elbow stuck in a cup. He's that cool. I know you're jealous of that skill.

We got home from Florida yesterday night, after a horrendous 12 hour drive. The drive was pretty unremarkable, aside from Jaymes deciding that my taking his hearing aids from him (he kept taking them out and dropping them) during the drive was unacceptable, and he did something about it. He grabbed a can of Play Doh and built himself a set of (sort of) identical hearing aids. Brown ones. Complete with the ear mold and behind the ear components. Thankfully he did not shove the play doh so deep that it wouldn't come out, he was very careful about it, and as soon as they were made and on, he was content. He rode the rest of the way like that, perfectly happy. Weirdo. ( :

The trip was pretty good, although I freely admit that I did NOT want to go. I hate Florida, and I would have rather spent a private, small Christmas with my family (Me, Jason, Jaymes, Sierra.). The original reasoning that we were supposed to go was that my Grandma isn't doing well, health wise, and we were going to spend some time with her. But it ended up that we only got about 45 minutes of that week with her, and the rest with my mother in law and Jason's brother.

The kids loved it. Marie (MIL) is really good with them, and she doesn't get upset about messes or any of Jaymes' odd behaviors. She actually is a teacher's aide in an AU classroom, so she knows how to deal with Jaymes better than most adults (non-professionals, anyway). Sierra and Jaymes had so much fun, they ate and ate and ate, and we got a much needed break from being parents. I don't think we had to fix a meal for either kid all week long. It was a good break. She even does diapers. Always nice.

Christmas was a lot better than I expected. Jason's family is really loving and everyone was in the Christmas spirit, no stress or anything. We all gathered around the tree at like 6am, and for awhile attempted the one at a time process of gift opening. This did not work for Jaymes, and it quickly dissolved into a paper shredding, bow flinging, tissue paper flying free for all.

I got a new phone from Jason, it's technically a "gophone" or a pay as you go deal, but you can pull the SIM card and stick the one from the old phone in and it functions the same as it would on a contract phone. The only difference is, because I'm using it on a contract, I void the warranty and it will not be replaceable. But that's no big deal, I can renew my contract in about a year and then I get a new phone. Phones don't last much longer than a year at my house. Anyway, I got an LG Neon, with the neat slide out keyboard. He also got me a pretty pink flowery cover for it. I love it! He also got me a pair of pajama pants, something he gets me every year, but which nearly killed him this year. He got 2XX size. I know I'm a little plump, but not 2XX plump. He could have stood in one leg, and me in the other, and we'd have been pretty comfortable. He survived my wrath by explaining that he'd read the hanger size tag, not the tag on the pants. Apparently the hanger said M. You'd think he'd notice, but it was really funny anyway. I returned them and got a pair in the correct size, and am enjoying the comfy warmth.

Sierra got a lot of baby dolls. She's like that foster parent who gets a billion foster kids to collect the money they get. Except hers don't make any money, and she destroys them rather quickly. These should last her awhile. She got a bunch of other stuff too, and is very happy with her toys. Some of my online friends made Christmas super-extra-special, and sent us some really wonderful toys and a couple gift cards.

Jaymes got some trains, and the LEt's Go Thomas train toy he wanted so desperately. Unfortunately, he seems to be afraid of it now, I hope he warms up to it. He also got a TON of Play Doh, and is overjoyed. His best gift ended up being from one of my NY online pals, a wooden food cutting kit. It's like bread, fruits, and veggies that are all broken into 3-4 pieces that hold together with velcro. It comes with a cutting board and a wooden knife, and it really feels like cutting a real veggie. Very cool. He is enjoying it SO much. He likes to cut everything into a bucket, take a whisk and stir it, then loudly declare "Jaymes makin' the yummies."

Jason got a bunch of DVDs from his family, and a couple small things from us. He was very happy. His family ended up giving me not one, but two snuggies, the miraculous blanket with sleeves. I regifted one, and I guess will keep the other, though I'll be teased mercilessly for wearing one at home.

All in all, for a trip I didn't want to be on, it went well. Jaymes did really well till the end, and you can't blame him for having a hard time with his schedule changed up so much on him for a whole week. I got to see my friend April, and my friend Julie. Oh and Tara too. Julie has the cutest, plumpest baby who makes velociraptor noises and grabs big handfuls of hair. I loved him, he was soooooooooo cute. Her kids look SO grown up, I don't see people often enough. I'm really glad I got to see Julie- I miss her a LOT.

I hung out with my other friend, Tara, at the mall awhile, then we went to Jason's moms, and talked. Then she opened up the back of her gorgeous truck, and the kids bounced and crawled around in the bed of the truck. They enjoyed this quite a lot. It was pretty funny.

So, it was a good Christmas. I think we only had one really terrible moment, and that's pretty darn good for a whole week. I don't want to do it next year, but it was nice. And for all my bitching about dealing with the in-laws, they're pretty wonderful people.

Saturday, December 19, 2009

What a week. Please tell me I will never have another one like this. Or at least not for a little while?

This rotten week was a combination of all things stressful. On Saturday, my mare Lucy was having a lot more trouble standing up from lying down to rest, and I finally realized that the time had come to put her out of her discomfort. There was no chance of her improving, and I wanted to let her go before we got to the point of the old lady lying in freezing mud, unable to get back up. Unfortunately, my former vet refused to euthanize this mare last time her saw her, saying he would not euthanize a healthy horse. She was far from healthy, but he wanted me to send her up to Raleigh and have a spinal tap done to check for EPM, and also ultrasound her leg. We're talking about a 20 year old mare who spent most of her life being worked hard and treated terribly. Someone in her past yanked on the reins so hard that they nearly severed her tongue in several places. She was starved when she came to be, and pregnant. This mare survived so much. She had such a happy, spoiled, loving nine months with me, and she gained back all the weight. She was bright eyed and shiny, and she knew that she would never want for a meal or love ever again. My old vet suggested sending her to auction to get a few bucks out of her and to be rid of her, rather than putting her down. Lucy deserved so much better than that, and she got it. I spent all day Monday making calls, and finally found a vet who discussed the situation at length with me, and agreed that it was time to give the sweet old girl the final kindness of a painless, quick death. I took Sierra outside Tuesday morning to sit on Lucy's back once more, pet her neck, and say goodbye. Of course, she's three and didn't understand, but she had loved that old mare and I thought it would be good to say goodbye.

Later on Tuesday, my wonderful friend Dianne picked Lucy up in her trailer to haul her out to the vet's office in Lexington. When Lucy saw the trailer, she actually started jogging around the pasture with excitement. It made me start doubting my decision, until we tried to get her in the trailer, and saw that she could barely use her hind legs. She made in it with the front legs, and slammed both hind legs on the trailer before managing to scramble inside. When we got there, Lucy was covered in sweat and her entire hind end was trembling violently. She's always enjoyed trailer rides, so I knew this wasn't trailering stress. She was in a lot of pain, and I cannot imagine the effort it would have taken to remain standing and bracing herself on the ride there. We are lucky she didn't go down and hurt herself. She came off the trailer badly, having to back out. Her hind end fell off the trailer, she just didn't know where her back feet where, but she did manage not to fall.

We brought her into the vet's barn, and Dianne and I fed her bananas, apples, and carrots. She ate a few, but didn't eat them all- not like her. She had also refused her last few meals at home. Eating was this mare's one great joy in life, and her refusing a meal told me she was done. I gave her a hug and kissed her nose, and waited with her until it was done. I figured she deserved to have me with her at this final moment.

Dr. McDonald (I hope I spelled that right) of Lexington Large Animal was incredibly kind to Lucy, and very respectful of myself and the horse throughout the process. She went down hard, and took quite a while to stop breathing, but I don't think she felt any pain in the process. The vet was very discreet about any of the aspects of things that might upset me, covering up any blood with a towel and treating Lucy's body very respectfully. He removed her halter and was even willing to get his farrier tools and remove one of her shoes for me to keep.

Dianne was wonderful and cried with me. We stayed with Lucy for awhile, just talking about her and rubbing her nose. She barely looked like the same horse, all the fire had gone out of her. But I think that's the most peaceful I'd ever seen this mare. Poor Lucy had a life full of suffering before I got her, and she was always on the alert for anything that might happen. She grew to love being spoiled and loved on, but she always had some level of vigilance in case things went sour for her again.

As much as it hurt, it was the right thing to do. My beautiful girl went out the right way: Fat, sleek, and shiny. Well fed, well loved, and wearing pink. As Dianne said to me, we should all be so lucky as to die fat and happy, dressed in our favorite color, surrounded by people who love us.

Tuesday night Jaymes had therapy, and I was feeling pretty sick from the stress of the day, but we went anyway. Jaymes did pretty well, except for this new spitting habit he has going on. It's almost obsessive, it started as a way to relieve his chapped face and nose, but it irritated the area so much that it really only made it worse. Finally got the face cleared by by keeping diaper cream on it at night and vaseline during the day, but it seems the habit of spitting into his hand and wiping it across his face has become something he cannot control. He's always slimy now, and if you stop him from doing it, he bites, or scratches. On Thursday he drew blood, which wasn't a lot of fun.

Wednesday, I had an IEP meeting at Jaymes' school to discuss the hearing related stuff and to try and figure out what Jaymes regular ed kindergarten teacher (the one who has him 30 mins a day) could do to help encourage Jaymes to participate in her class. I'm concerned that it seems like everyone just tolerates his presence in that classroom, and that there is no effort to communicate with him- I think they leave it to his classroom aide to deal with him. It's defeating the purpose of sending him out of the classroom. I tried to get some real answers on what woud be changed, but nothing of it ended up in the IEP and other members of the IEP team repeatedly changed the subject. So at this point, I don't know if anything different will be done.

In addition, I was horrendously nauseous during the meeting, still feeling the stress from Tuesday I guess, so I really did not talk much, or get half of what I wanted dealt with out on the table. It was the shortest meeting, by far, and one of the least productive. Also, due to being ill, I honestly cannot remember most of what was discussed. One thing I found really concerning was the subject of recess. Last IEP meeting, we had put into the IEP that Jaymes' class would be changing their time and going to recess with Ms. McGee's regular ed Kindergarten class. But on Wednesday, I was told that they are going out with Mr. Largent's class- another AU class. That is NOT what we had discussed, and I'm not happy about it at all. I can't help wondering if it hasn't always been that way, or if they really ever did go out with the regular ed class. If I'd been feeling better, I would have jumped on that, but I wasn't and I feel kind of like I really wasted the opportunity, not sure if I can do anything about it right now. It would be ridiculous to ask for another IEP meeting just because I was too sick to function during the last one, I should have cancelled.

The good point to the meeting was that Jaymes' school OT, Ms. Nelson, made a bunch of new OT goals for his IEP that are really good goals. She is incredible, and I have 100% confidence in her. She's one of the very few at that school that have Jaymes' well being and education in mind over all other things. None of this childish BS that I get from others.

The assistive technology stuff is still going, and would you believe this has been over a year in the making? I'm really shocked at how long this has taken, and at how much everyone involved (except the speech therapist, she's pretty good and Jaymes seems to like her a lot) is dragging their feet. I have zero confidence in any of that part of things, but at least I tried.

The school audiologist will be testing him at some point, although Mrs. Evans- Everett (I forget her title, but she's one of the higher-ups in the school district) made it a point to explain that there is no minimum time frame (so I guess they can take as long as they like?) on anything. Not sure why this was an important point to make, but then she's the expert. The other slightly odd thing that happened was that she actually kind of scolded me for taking Jaymes to Speech at Comprehab, saying that it was highly frowned upon and that Comprehab was not a facility the school supported, and that the reason they do not have much respect for evaluations and other reports from out there is because they take lots of kids out of school for sessions... It was really weird. I just thanked her for her opinion, I'm not going to take Jaymes out of therapy there. He misses 2 hours of school per WEEK, just on Thursdays, and he learns more with Shawna than he had gotten from 3 years of being enrolled in Winston-Salem Forsyth County schools. So no, I'm not taking him out of therapy so he can attend those 2 hours. Nor will I apologize for that choice.

I'm about fed up with the school, and thinking I might be better off looking at other schools. I do not think homeschooling would be good for either of us, though other parents I know have considered doing this. Too bad I can't just send him off to one of their houses for homeschooling!

I really do like Jaymes EC teacher though. She seems to have come over to the dark side (we have cookies!), and has been extremely pleasant, helpful, and accommodating towards my little guy, and she has taught him a lot thus far. No complaints there. I'm thrilled that he is doing so well in the EC room, I just wish that the regular ed teacher shared her enthusiasm, and willingness to change things up a little to help Jaymes out. He needs to get out there and spend time with his nondisabled peers, or he will end up going from one self contained classroom to the next for the rest of his life. That isn't preparing him for life, it's preparing him for a lifetime of being segregated from the "normal" kids.

Anyway, after the IEP meeting, I had to go home, be sick on the couch for awhile, then head off to class in Winston. Lucky me had a math test. I was still feeling pretty nasty, but I got a 98 on my test, should have an A in that class. Should have A's in everything except history, and that professor really didn't actually teach anything, so I think it's amazing I managed to do as well as I did. I have not gotten my final paper back yet though, the agonizing 9 page one. Bleh.

Thursday was therapy again, and the spitting had gotten so bad that he couldn't really do anything. It was pretty awful to watch. I felt bad for the therapist too, who was being drooled on and used as a slime wiper. We had to wait around another hour after that for the van to come, and it was an interesting situation. Normally, we wait in the hall, but they were painting the hall that day. Also, in the main lobby, they had a bunch of people playing Xmas songs and stuff, so Jaymes' screaming was not very much appreciated there. We ended up sitting against a door in the hallway hoping that Jaymes voice would not carry down to the music thing in the lobby. Luckily it did not. However, sitting there holding Jaymes still was not good. He wanted to be up and kicking and punching the wall, or hitting me, so I held him in my lap and tried to calm him down. Unfortunately, all I accomplished was getting bitten several times and scratched bloody. We left eventually, me trying very hard not to duct tape Jaymes to the ceiling fan. (Kidding, all you social workers, reading this and contemplating calling DSS! LOL). Anyway, not a good day. Add to that the fact that I spent Mon, Tues, Wed, and Thurs randomly bursting into tears over the horse, which was horrendously embarrassing!

Friday was better. Quiet day, and it started to snow and I realized how good it was that poor miss Lucy did not have to be out there in the snow storm. This morning we had 10 inches of snow. Can't get the car out of the driveway. The kids had a lot of fun playing outside. I put walmart bags on over their socks so their feet wouldn't get wet, and bundled them up so much they could barely move.

Monday we are supposed to be leaving for FL to visit my grandma, who is very sick, and also to spend Christmas with Jason's family. I'm still feeling pretty down, I feel like something really bad is going to happen if we go, but that's probably just crazy anxiety. Just not looking forward to it I guess.

I got the kids gifts all wrapped, they will have a really great Christmas. That's what matters, and I will really enjoy watching their little faces when they open their presents. Jaymes will be drowning in new Play Doh and all kinds of cutting accessories. Sierra has a little doll house, a big sized plush My Little Pony that lights up and comes with a baby bottle, and some other really cool stuff. They will have a good Christmas, despite the troubles we've had this month. I'm very glad that it will be a good one for them.

Anyway, happy holidays to everyone, and may all your autistic children eat food and not bubblewrap or beanie babies.

Monday, December 14, 2009

Sad news

I don't think I ever posted about this before, but about a year ago, I bought a very thin, very neglected old horse. Got her hooves taken care of, got her nice and fat, got her surprise baby born, weaned, and sold... We got to go on two trail rides, Lucy enjoyed them a lot. Unfortunately, Lucy's past caught up with her, and her hind end started to break down. She can barely stand back up when she lies down to rest. Lucy was a wonderful horse, and she gave me and the kids a year of happiness loving and caring for her. She will be put to rest tomorrow, and will be very much missed.

Monday, December 7, 2009

The flu, Black Friday, hallucinating snow, and the holidays

It's been crazy as ever at the DBTD house, ever since I wrote that Thanksgiving post. It turned out to be fairly difficult to be thankful this year, because Sierra and I were both hit with the flu AND a stomach bug at the same time, Thankgiving morning. She and I spent our Thanksgiving puking and lying in piles on the couches. We pried ourselves up for dinner with my mom, but neither of us could eat. As soon as she left, we went back to bed. She and I both spent the night with fevers, I was up to 102.5 and for some bizarre reason hallucinating large amounts of snow outside.

Needless to say, we did not get to go out at 4am for Black Friday. Jason went alone, trying to get my sewing machine (my gift from my mom this year). It's a family tradition for us, going out at 4am and standing in long lines, freezing cold and sleepy. Even the kids enjoy it. We did go out again at 10am, having missed all the good stuff, and picked up a $2 pyrex casserole dish to replace the one Jason broke.

Jaymes has been doing SO well with his hearing aids. He leaves them in all the time now, even in the car. He does spend a lot of time itching his ears though, which is a pain because it knocks out the ear mold and he gets all upset and wants me to "fixit the ears!!!"

He is clearly hearing better, and his speech is getting easier to understand. On the down side, the whole echolalia thing is picking up quite a bit. In speech, he's been just repeating what the therapist says a lot of the time, rather than answering with his own response.

We're having some issues with biting, too. The other day, driving on I-40 to my friend's house, Jaymes took advantage of the fact that I couldn't do anything to stop things happening in the back seat while driving on the highway. He kept grabbing Sierra's hand, pulling it toward him, and biting her fingers. She was hysterical, because well, it HURT. I was not anywhere I could pull over, so I flailed one arm and bellowed at him, which stopped him briefly. Finally was able to get off the highway, he went to do it again and I slapped his hand and gave him the mommy death voice. He stopped immediately, with a look of horror on his face. He hasn't done it since. Poor Sierra is such a little trooper, when asked if she was ok, she replied with a slightly sad "Yes, I'm alwight."

Got the Christmas tree put up. Originally we were using the same pitiful little three footer from last year, with it's crazy sideways lean. Then my friend Kristi found a bigger, much nicer one for sale on Craigslist. It looks really, really nice! I put it up the other night, and in the morning when Jaymes walked out, he did a double take.

Jaymes is psyched for Christmas. He loves the lights, the candy canes, the snowmen. He loves the wrapping paper and bows, the shiny ornaments, and the music. Both kids adore Santa, though Jaymes is less interested in sitting on Santa's lap and more interested in robbing the fat man of his bowl of candy canes. He's lucky he's cute, any other kid would be on the Naughty list for that offense!

Here is a video of Jaymes and Sierra's responce to having the tree put up. This was before we got the new one, so feel free to giggle at our wimpy sideways tilting tree of pathetic-ness. Make sure you turn on the sound, Jaymes was talking a lot and Sierra was singing. Very cute, happy little spawnlings!

Wednesday, November 25, 2009

The Obligatory Thanksgiving Thankfullness Post

Because every year, we all do it. Even when things suck royally, like they do right now. Every year something bad happens before the holidays, and this year it was Jason losing his job. However, we still have a lot to be thankful for.

I'm thankful for my kids...

Sierra is a little prodigy (in my world, anyway). She has developed this insane vocabulary in the last year, and people really can have full conversations with her. She is so clear, and she understands how to use her grammar pretty darn well, it's just weird! Currently, she likes to make mommy and daddy melt by saying that mommy/daddy/Jaymes/Echo the dog...etc is "my best fwiend." When I leave for classes on Mon and Wed, she runs to the door, waves, and says "have a good day at school mommy!" When I get home, she runs to meet me with a big hug and a loud "Mommy, I miss you!"

Jaymes is Jaymes. I love him regardless of whatever things he may or may not be doing at any given time. Right now I'm super thankful to have found an audiologist who could test Jaymes, and had the patience to outlast his uncooperative-in-the-soundproof-booth issues. I am thankful Medicaid paid for Jaymes to get hearing aids. I'm thankful that he gets to have the fun of choosing what color ear molds he wants.

I'm immensely thankful that Jaymes did realize that the hearing aids help him hear. He loves them now, and if one falls out when he's being just a little too bouncy, he runs to me and asks me to "fixit the ears." He's wearing them all day long now, even in the car. He's wonderful about it, if one gets loose or the over the ear part comes off his little ear, he immediately lets one of us know so we can fix it.

His speech is SO much clearer. And there is SO much more of it. I love listening to him talk. Today, we went to the Children's Museum in Greensboro to play, and Jaymes did so much great talking. He was able to tell me that another child was playing with the train, or that he was reading. His speech therapist has worked really hard with him on learning those "ing" action words, and I was amazed at how many actions he was able to identify as he played.

I'm thankful for my being able to go to school, finally...

It is SO nice to have adult conversation with someone other than my husband. Even math is a pleasure, because I get to be out of the house and in society. For a long time, I was stuck 100% in either the house or the pediatric therapy waiting room at Baptist.

I actually really enjoy the work, particularly the English work. I'd forgotten how good writing essays made me feel. How weird is that? Yeah, I love to write essays. Although the eight to ten page history essay due shortly is another story! I'm making excellent grades, which is a little surprising considering I was a solid C student (except in English) through high school.

Nice too, is the fact that not only do I not pay a cent for school, but I get the extra $1000 the Pell Grants pay out after tuition and books are paid for. That comes in handy for bills when the husband is unemployed.

I'm thankful for my horse...

She may be old, lame, bitchy, and lazy, but she is a cool old mare. She's gorgeous now, fat and sassy, which is SUCH a change from the way she looked when I got her. I was lucky enough to get several amazing trail rides out in Pinnacle before Lucy went lame, we even got to ride in the Yadkin!

Lucy's been on pain meds, stall rest, and having her legs wrapped for support for the last four months, and probably will not be even remotely ready to start back to work until summer. That's a little sad, but she does need hand walking, and I do too. Together, we are rehabbing ourselves back to working condition. I find that she really prefers the being lazy to actual work, surprise surprise.

I'm thankful that I finally did get to see the doctor (although her was a jerk) and got the next six months worth of pain meds (the non-narcotic variety, thank goodness) and meds for my acid reflux, which I have not been able to get my paws on in a long time. I feel much better, and much less tired. It was really exhausting to be in pain all the time and feeling sick all the time. I'm not 100% by any means, but it is SUCH an improvement! Also, all my meds are on the Walmart $4 list.

Have I mentioned how thankful I am for that list?! Walmart may be evil in many, many ways but they really did the uninsured folks like myself a HUGE favor in instituting that $4 list.

Anyway, I'm looking forward to a delicious dinner tomorrow, and trying to coerce Jaymes into eating some turkey. He loves mashed potatoes and cranberry sauce, and what meal would be complete without an added "therapy session" in the mix? I will hopefully return to this blog, triumphant, with some turkey, stuffing, and yams in Jaymes' little belly.

And I do pray that the room isn't smeared with poop in the morning, because that's just not the way to start Thanksgiving day.

Have a good one, everybody! Eat some extra turkey on Jaymes' behalf. I'm not sure I'll be able to talk him into it.

All in all, life could be worse. We don't have much money, but we have family and my sense of humor remains intact. If you can't laugh at all the crap life throws at you, it would be altogether too depressing.

Friday, November 20, 2009

I do not like green eggs and ham (the DVD). I do not like it, Sam I Am.

I do not like green eggs and ham. I do not like it here or there, I do not like it anywhere. I do not like it in the rain, or on a train. It pains my brain. I've seen it here, I've seen it there. I think I've seen it everywhere. In the living room, at therapy, on my laptop, you name it. I cannot watch it anymore, it's been watched so much, it is a bore.

However, Jaymes does love green eggs and ham. He does, he loves it, Sam I Am. And he will watch it here or there, he will watch it anywhere. He will watch it in a house, he will watch it with a mouse. He will watch it in a box, and he will watch it with a fox. He will watch it in the car, and he will watch it in a tree, it is so good, so good you see. So he will watch it in the dark, and he will watch it in the rain, and he will watch it on a plane. He will watch it on a boat, he will watch it on a goat. Jaymes sure does love green eggs and ham, and bored, so bored, so bored I am.

Jaymes is obsessed with Green Eggs and Ham. I curse you, Dr. Seuss. Although it is incredibly cute. So I guess it's ok. Ever since he got his hearing aids, watching green eggs and ham has been hilarious for both of us. Jaymes goes along with the words. He actually gets out whole rhyming sentences, it's really neat. He also adjusts his voice for each character. Sam I am has a happy voice, and the other guy (who does not like green eggs and ham) has a loud, angry voice. Jaymes does it perfectly, and he does the part of the angry guy with passion. It's really funny to listen to him. He takes it very seriously.

He has also begun to follow along with the show in his book. I wonder if this would be a good way to start teaching him to read certain words in print, since he knows them and loves them. I guess that might not be genuine "reading" though, if he's got it all memorized. I don't know.

I love the hearing aids. I love how much more Jaymes is talking, I love the clarity of the words, and the volume control. I love that his voice has emotion now, where it has always been fairly monotone. Jaymes loves the hearing aids. He gets upset when they come out at bedtime or bathtime, and he asks for them first thing in the morning. He comes right out of his room, asks for a popsicle like he does every morning (and never gets one!) and then says "Want ears, want ears."

I think this has been a huge success. I'm not sure the school is on board with it, but they will be in time. I have faith in the principal over at cash, she's really good. So is Jaymes teacher. They just have to get used to my way of doing things. I don't think I always ask for things correctly, I can be a little bit blunt sometimes. I have a lot of foot-in-mouth moments.

This is one of those situations where Jaymes makes us all look stupid. Everybody, myself included, was so sure Jaymes would make the whole hearing aid thing a huge fight, and that there was no way he'd keep them in... Well, he sure proved us wrong!

It's that time of year again... And refrigerator boxes and bubblewrap reign supreme.

In the past five years of gift shopping for my son, I cannot count the number of times I've thought that it would be more logical to bypass the expensive, flashy toys in favor of the boxes and wrapping that he enjoys so much more! How many fellow autism parents have developed an eye twitch after spending hundreds of dollars on high tech toys promised to develop skills that these kids are lacking, and seeing them toss the toy across the room then grab the bubble wrap and scream with delight? Fear not, however, I have finally found some toys that can compete with their packaging.

If it's fragile, it's a bad, bad, bad idea! The biggest characteristic of a good toy for kids with autism is durability. If it's not durable, it will not last long. Toys have to withstand throwing, stomping, dropping, moisture, food being mashed into them, and being left out in the rain. As cool as that Nitro Notebook laptop toy is, it's $80 badly spent in this case. Delicate electronics don't stand a chance. Porcelain dolls are dangerous. Stuffed animals often get shredded.

There are certain toys that a child gets attached to, to the point of not being able to handle being away from it. In our case, it was a stuffed horse that came from Wal Mart. By the time it had worn to pieces, Walmart had stopped selling the toy. Get something relatively generic, so it can be replaced with an identical one later down the line. It will save you a lot of heartache, headache, and you won't have to watch the child carry around the shredded, filthy remains of whatever the toy started out as.

I've yet to meet the autistic kid who did not absolutely love music playing, light flashing, noise making toys. A favorite of my son's is Playskool's toddler guitar. It's a noisy, headache inducing toy, but he has been unable to break it, and has not tired of it. Anything with lots of lights and cound will keep an autistic child interested, but after awhile the parents may ban you from giving them!

So called "fidget" items are really useful for kids with autism. Small balls with different textures offer a wide variety of tactile play, a bucket of beans is always a favorite, and small puzzles like the plastic Tangle toy or the Rubix cube are great, depending upon the age of the child. Play Dough is good for certain kids, but not so much for individuals who are sensitive to messy hands.A huge Tupperware box of dry rice and beans can provide a wonderful, affordable toy. It's messy though, so keep it outside. Also, be prepared to see hundreds of tiny bean stalks sprouting from your lawn after it rains.

Talk to the child's parents and find out what he or she is doing in therapy. Perhaps a therapy swing from Flaghouse could be a welcome addition to the home. Flaghouse also carries a variety of balls, toys, weighted blankets and vests, ball pools, climbing toys, and even bubble columns. These are all things that parents of autistic kids will get a ton of use from, and which will retain their value should the child outgrow or develop beyond the use of the item, enabling them to resell it later on to get something else. it's the gift that keeps on giving.

One product we own and love is the My Busy Kit. Not only is this collection of activities a blast for both kids and parents, but by buying one, you're supporting a small business that is giving back to the community in a big way! The kits come in a variety of types, including a My Airport Kit, My Toddler kit, and kits specifically designed for either boys or girls. The kits come with mini puzzles, stickers, word games, tactile toys, safety scissors, sewing cards... Basically a treasure trove of autism-safe fun in a very nice, reusable zipper bag.

Another product I'm a big fan of is Goosie Cards. I believe they are now selling the gift certificates for card sets at Toys R Us. Basically, you pay for whatever size card set you want, then you go online to their website and upload your own photos. Next, add your text to create a one of a kind set of flashcards geared especially toward your child's learning goals. We made a "Places to Go" set that included carda featuring the Children's Museum, school, grocery store, and a small set that showed the steps to getting there (i.e. getting into the car, fastening the seat belt). The cards are huge, sturdy, and waterproof. They are also just about indestructible. Kids think it's cool to see their picture on the cards too!

Or, you could always go old school style and just buy a huge roll of bubble wrap from the packaging store. I guarantee that will be the best loved gift at any party, autistic kids or normally developing!

Wednesday, November 18, 2009

A Repost. Survival tips for parents of special needs kids. Or any kids, for that matter.

I came across this on my own website (oh wonder of wonders) and was not sure if I'd ever blogged this one. It amused me, so here's to amusing somebody else with the same thing.

And yes, I did make two posts in one day. Where's my award?!

Tip #1: Some things never change

Remember when your son or daughter was a sweet little newborn? All that advice you got from friends and family, particularly concerning sleep, remains useful years later. Sleep when they sleep. If you're dead tired, taking a nap will recharge you and will also replenish your supply of patience. If Jaymes passes out on the couch, so do I. He's recharging for some more havoc, why shouldn't I?

Tip #2: Target agrees, different foods should not touch!

Target sells the cutest little plates that are just perfect for kids who do not like their food to touch. They are the type with little sections, and come in all kinds of cute shapes, sizes, and colors. Jaymes has a dinosaur one, a fishy, and a barn. Sierra has an owl and a heart. No fits because the mashed potatoes touched the green beans.

Tip #3: Toys that they don't see often will save you, everytime!

We have a secret stash of toys that the kids see once in a blue moon. At an appointment, a funeral, someplace they need to be quiet. It works like a charm, but be warned: You MUST keep the toys hidden and only brought out occasionally, because as soon as your child realizes it's sticking around, the toy loses it's appeal.

Tip #4: Don't hold it in...

What's your outlet? Mine is writing. When I'm at my wits end with Jaymes and want nothing more than to jump off a cliff screaming "I HATE AUTISM" I write my feelings down. I acknowledge that dark side of living with autism and I accept that I cannot and should not be positive and sunshiney about it 24/7. It's not healthy! We all have to blow off steam sometimes, holding it in will just make us go insane. So go ahead and scream into your pillow, write a grumpy rant, hop in the car and sing to your loudest music. Let it all out, and you'll soon feel that positivity returning.

Tip #5: Because I said so...

We as parents should never feel that we have to be apologetic or feel silly about things that matter for our kids. If you as a parent think your child needs to be on a GFCF diet, enforce it! don't let anyone make you feel stupid, correct them when they tell you one little bite of cookie won't hurt. It doesn't matter who is right, you're the parent and it's your call. Stand up for that.

This goes for behavior too. When I have Jaymes at Walmart, and he is doing something we do not allow (for example throwing his leg over the side of the shopping cart and dangling), I often feel self conscious about redirecting him because people hear him shriek and give me the stink eye. As hard as it is, we need to be able to look past that and just do what needs to be done. Letting Jaymes get away with thast behavior isn't going to help him any, and if he falls it'll be quite painful for him. Better to endure some nasty looks than to let a negative behavior become one that your child thinks is ok.

If you feel your child should not be vaccinated, or should be on a customized schedule rather than getting everything at once like the doctor usually does, speak up. I personally prefer to vaccinate, but for Sierra I do the staggered vacc schedule because she has in the past had a reaction (not autism causing, a physical reaction that put her in the hospital for 4 days). I have been fortunate to have only experienced pediatricians who are respectful and willing to work with parents, but from what I hear, this is not the norm.

Speak up! Tell the doctor your reasoning, and what you would like to do. Don't tell them "The vaccine mafia is trying to kill my child!", they will dismiss you as a wingnut. Be calm and rational, and stick to your guns. Don't back down. Anything can be won if you just keep to it.

Right or wrong, we are the parents, and what we say goes.

Crises of the week

Ah, it's that time again. Every now and then, you just really need a good whine. Feel free to skip over this one, though. I wouldn't blame ya. Except, there will be some positives at the end, as always. Consider that my attempt to look at the glass as half full, instead of half empty. Or broken in jagged pieces on the floor in a puddle of milk that I will inevitably step into, cut my foot, slip in the milk, and break a leg. Oh wait, we were talking positivity, weren't we?

School first. I love school, I really do. It's really nice to get human interaction. Even math is pleasant because the teacher is really a cool guy with a sense of humor on par with my own (twisted? Nah. Well...). I only actually have two classes that I "go" to. The others are online. I go to English and math on Mon and Wed. I love English, for obvious reasons. I love to write, I enjoy getting good grades in it, and I find many uses for the papers I'm writing there. Also, that teacher is pretty cool as well. Again, somewhat twisted sense of humor. Very unique math teaching lessons- priceless, in fact.

I was supposed to be whining, sorry about that. I run off on a tangent more often than not, although you all should know that by now. Read at your own risk. Uh... Talking about school. I'm getting kind of overwhelmed. All the work is piling up at a time when I have no time to myself to DO the work. I have a math test on Monday (my birthday, incidentally. Woohoo, big 24.), a 10 page history paper in a few weeks, a literary analysis paper due soon, a Powerpoint presentation (and no Powerpoint on my computer..ack...), 2 Psychology quizzes and a discussion board due today(-eyetwitch-)... ACK. Panic. Hard to concentrate on anything (hence this post being oddly rambling and disjointed) with Jason home all the time, Sierra making noise, the dogs being annoying, the cat attacking Sierra's milk, Jason yelling at the cat, Sierra yelling at the cat...

Point being, I need to get some work done. Also, my perfectionism kills me. I got several papers back today in English. One was 100, which is great, although I'm not sure that paper deserved 100. Another got a 93, and another a 92 (I think.) I really prefer 100's. Or 99's. It pains me to get anything lower, because if I'd have tried harder and proofread a little more and researched the use of the goddamned SEMICOLONS, I would have gotten the grade I wanted. I hate when I do sloppy work. I need to do better.

I emailed the school today to ask for another IEP meeting (I know, it's only been 2 weeks since the last one.. blech...) to discuss Jaymes' hearing loss, his hearing aids, and ways the school can make it easier for him to participate abd learn. They will be overjoyed, I am sure. I wish I could just be nice and pleasant and happy all the time, but the school is not taking Jaymes hearing aids seriously. Although, neither is anyone else. I seem to be the only person who thinks he needs them, and who sees a benefit. Also, I am the only person who remembers to turn them on when he wears them, and off when he takes them off. Meh. I feel like I'm always riding that poor teacher, and I feel awful about it. But given the choice between the teacher's feelings or my kid's education.. Well, what choice do I have?

I miss Jaymes. Wednesdays, I don't even see him. My meds knock me out from 10pm-9am, so Jason puts him on the bus. Then I leave at 2 and don't get home from class until after bedtime. Makes me sad not to see my little snugglepuff.

Jaymes is having a really hard time right now with separation anxiety. When I leave the house for any period of time, for any reason, Jaymes goes hysterical. He screams and cries and thrashes and is in a state of pure panic for however long it takes for me to come back. Literally, he can cry for hours. It breaks my heart to see him cry like that when I have to leave. Poor little booger, I don't know what's going on with him right now.

Sierra is being a muffinhead lately. She is being very pushy and defiant, hitting me or daddy or the dogs and spitting, biting, etc. It's really not like her. I'm hoping it's just a phase and she'll cut it out soon, she's too cute and sweet to be rotten!

Jason continues to sit at home and stress me out. He plays his games and yells at the TV. Or obsessively cleans things. Or complains about his ex-job. He needs to go back to work before I go insane.

I guess we're talking about going to Florida for Xmas. My mom offered to help with gas, so if I can find a dogsitter and a horsesitter, we may as well go. It's a good time, with Jason being home. I hate FL and do not want to go, but Jason really does and it would be nice to see my grandma and my aunt and all my FL friends. But I hate the drive, and I hate the weather. We'd be home before Jaymes' birthday, which is a big deal to me. Probably have another birthday party nobody comes to except Kristi, who is the best loyal buddy I could ask for.

My weight is bothering me a lot. I feel like a cow, I hate how I look, but I hurt too much from my horse accident to exercise much and I'm hungry all the time. And tired. I guess there isn't much point to dieting this time of year, I may as well do it after the holidays. I just hate looking at the scale and seeing that I'm 30 pounds more than I used to be. I was happy when I was 120. That was ok. I lose weight, then I gain it right back, frustrating!

Worried about the holidays and how we're going to get the kids gifts and make their Christmas good... Traditions matter a lot to me, I want my kids to have wonderful memories of really special holidays, not years when we can't pay rent, no less buy a Christmas tree.

And at this point, having accidentally hit the "post" button, I'm going to give up. My positivity for the day?

My kids are awesome. My kids are smart, and adorable, and wonderful. My dogs are friendly, but stupid. My horse is a grumpy old wench, and she and I are a great fit. We have a turkey in the freezer. It could be worse.

Tuesday, November 17, 2009

Thar be cows!

Sierra has a unique phobia (click on that link at your own risk, it's so stupid you may actually lose brain cells). We'll call it Mooaphobia. Or Bovineaphobia? She has a fear of cows. Big cows, little cows, pretend Chick-Fil-A cows. We can blame the Chick-Fil-A cow at Hanes Mall for this one.

It all started with a trip to the mall. It was a busy Sunday and the Chick-Fil-A in the food court had an employee in costume, as the much loved CFA Cow. Beloved mascot, cuddly pal. Jaymes thought he was awesome. He hugged the cow, high fived the cow, and poked the cow in the eye. Sierra came unglued.

Ever since, her fear of cows has been ridiculously ridiculous. At the fair, we went into the cow barn (that look nothing like the CFA cow, mind you), and poor Si-Si just about had a panic attack. She cried, shook, and begged me to "get me outta here! I'm 'fraid!"

So we avoid cows. We don't eat at Chick-Fil-A. But sometimes, the cow comes to us, as was the case last weekend. We went to the mall to walk around and share a pretzel, sat down in the food court, and who do you think was wandering around the tables? Yeah, the damned cow. Sierra went ridgid in her daddy's arms, started shaking, and her eyes got flying saucer huge. Poor Sierra. She couldn't eat or relax. We ended up having to leave.

And ever since that day, Sierra thinks there are cows hiding in the dark places in the house. Cows under the bed. Cows in her room. Cows in the closet. And only mommy or daddy taking a pillow to beat the cows out of the room will convince her to come into one of those "cow zones."

My kid is weird. Jaymes still loves the cow. Go figure.

In other news, Jaymes is doing great with his hearing aids. He keeps them in, has not broken them any more, and is talking up a storm. His words are clearer and he talks and talks in babble talk all the time. It's really cool.

In crappy news, hubby got laid off, so we're not very excited about the holidays. It was bad timing. Oh, and my birthday is Monday, so I'll be another year older, but sadly no wiser! I have a math test on my birthday, hooray. At least the teacher is cool. He's great conversation.

In even more news, we had another IEP meeting (the 4 hour variety, of course). Some good stuff happened, some incredibly insulting BS happened, but in general it could have been worse. Jaymes is doing well in class, so that's something.

My skinny old horse is skinny no longer! She's finally officially "rehabbed" and plump and happy. She's recovering from a tendon injury though, so no riding until maybe next summer. We'll see.

Sorry for the unexciting post, my next one will be better. Really. I swear. Yeah.

Tuesday, November 10, 2009

Defining "advocate"

So I had to write a definition essay for my English class... And it occurred to me that this would make an excellent blog post. Because, you know, I never ever use my papers as cop-out posts, now do I? Bwahahahaha. Anyway, enjoy. Don't tell me it sucks, because that will bruise my fragile ego and you'll reduce me to a sniffling, Pixie Stick devouring fool.

When the Definition Just Doesn’t Cut It

If you look up the noun “advocate” in an online dictionary, the first definition to pop up on your screen is “one that pleads the cause of another.” While it is a succinct, accurate definition, it fails to convey the emotion and dedication that lives in the heart of any parent who advocates for their special needs child. A true advocate does so much more than plead the cause. The cause is the air we breathe, the life we lead, and the ambition that fuels our devotion to our children.

One is not born an advocate. It is something that develops over time, a slow and laborious process. It begins with the obvious: the cause. In this case, a special needs child. As new parents, we look at our children with wonder and joy, never thinking about the hurdles they might encounter later in life. They’re perfect, and we’re hopeless. We’ve never done the parenting thing before, and we’re scared and inexperienced. We make mistakes, we learn from them, and we begin to build a foundation of knowledge. Sooner or later the day comes when we are presented with our challenge, be it a diagnosis of Down syndrome, autism, blindness, deafness, ADHD, cerebral palsy. We’re unprepared, even if we think we have it all figured out. We travel down the long road of medical visits, psychological evaluations, IEP meetings, therapy sessions. Again and again, we meet resistance that stands between our children and their best interests, and sometimes we compromise where we should have stood firm. Sometimes we stand firm where we should have compromised. Sometimes we pick really stupid things to make a fuss over, like whether they should be allowed to chew straws at school. Then we step back, re-evaluate, and try again and again until we get it right. We never really get it perfectly, but we keep trying anyway.

As advocates, we fight our own personality flaws. We step outside of our minds for a time, and overcome the things that would hold us back. When we walk into the school for an IEP meeting, we are confident and assertive, even when in our heads we’re terrified and uncomfortable beyond belief. We try not to show weakness, because if we do, then we run the risk of not being taken seriously by that room full of professionals with years of experience and walls covered in diplomas. So often, we’re “just parents” and we have to fight to be treated as equals in a society that doles out respect based on the letters that appear after one’s last name.

Advocates don’t give up. We accept that we won’t always get what we feel our kids need, and we compromise where we have to, but we never stop striving for the best. We don’t wallow in self pity or humiliation after a sound verbal trouncing during a meeting with a school district bigwig, instead we reflect on what could have been said to avoid that situation and learn from it. We develop thick skin and accept that there will always be people who disagree or who flat out do not care, and we realize that there is no place for hurt feelings and bruised egos if we are to help our kids achieve their goals.

An advocate never stops learning. We research everything from diets to alternative treatments. We learn about our children’s schools, their teachers, their therapists. We strive to stay informed and in regular communication with every professional in our children’s lives. We write emails, scribble notes on ripped pieces of notebook paper, leave messages with the endlessly patient front office secretary. We spend hours poring over IEPs, progress reports, therapy notes, and assessments. We learn crazy terms like “proprioception” (the awareness of movement, an important factor where autistic kids are concerned) and write out the word “otolaryngology” so many times that we no longer need spell check to get it right.

We are not infallible. We’re human. Sometimes we put our feet firmly into our mouths, sometimes we act like idiots. Sometimes we have no clue what we’re talking about. Sometimes we’re cold and demanding, or we’re meek and lacking in any kind of confidence. Sometimes we feel terribly guilty for making waves, or for getting school staff into trouble, even though we’re only asking for what the law promises our little ones. Sometimes we get mad, and wish we could strangle somebody. Some of us have been known to go so far as to cuss out a tactless physician or teacher. Sometimes we go to a meeting totally unprepared, and sometimes we’re too nervous to read the list of things we want to discuss at that meeting. Sometimes we really wish we could just sit back and be happy and nice to everyone, and hope that things will just fall into place and that everything will work itself out.

So yes, an advocate is someone that pleads the cause of another. But more than that, an advocate is someone who is devoted to their cause, who lives it and breathes it and never stops trying. You just can’t put all those things into one little definition

And for the record, this "we" I used is not me. I'm a piss poor advocate right now. I'm in those learning stages, I'll get better. But I suck right now. That's why I lean on the wonderful folks of the ECAC for advice, support, and ideas. The "we" in that essay are the parents I'm fortunate to be friends with and the professionals who make advocating for kids with disabilities their life's work, those who generously share their knowledge and experience with me.

Saturday, November 7, 2009

We have EARS

Jaymes got his hearing aids on Friday, right before yet another stress filled IEP meeting. He chose green ear molds and a blue "thingy that goes behind his ear" or whatever you're supposed to call it. He also wanted star stickers on the blue things, so that was done. I meant to mark them so I could remember which one went to which ear, because I have an awful memory, but I didn't do it and have been remembering that the one with the red dot on it is for the right ear, because it's legal to do a right on red when you're driving. And also, there is no blue light in driving, so the blue one must go on the left. Hmm, now that I've typed it, I hope that's right. Why on earth couldn't they forget the colored dots and put an L and R on each one?!

Jaymes got a ton of Stuff. He got a gift bag with an elephant puppet that Sierra immediately made her own, and a book about an elephant (coincidence? I think not!) who gets hearing aids. Jaymes likes the book. He also got the worlds most hideous carrying bag for all his hearing aid stuff. It's like 6 different vomit-like muted colors, with random buttoning flaps that serve no apparent purpose. It amuses me. It's hideous enough to stand out, so it won't get lost- which is awesome.

Anyway, the audiologists over at Forsyth Hospital/Whittaker Rehab spent forever explaining things to me that I got home and promptly forgot. Luckily, they sent me home with paperwork that repeated it all. Lots of care instructions, testing, putting in the deadly toxic batteries that I need to keep hidden from children who might devour them in a fit of suicidal curiosity...etc.

The first issue encountered was that the left earmold wasn't quite right. It's really hard to get in right, and is seems loose. The right one doesn't bother Jaymes at all, and if he takes one off it's the left- I assume because it's not quite right. We'll have a new one in 2 weeks.

The second issue is that Jaymes quickly discovered that if he tilts his head sideways and presses his ear to his shoulder, the hearing aid makes a shrill screeching sound. Jaymes likes this sound a lot. He calls it his music. I call it stimming with the hearing aid. Bad Jaymes! He doesn't do it too much at least.

He immediately took the aids out in the car. Put them back in (which is harder than it looked when the audio person did it) and he was good until the next car ride. Today was better, he only took them off twice today, both times in the car. I'm wondering if the sound of the car, the sound of Sierra talking VERY loudly next to him (incessantly, save me someone) is just too much for him and thats why he pulls them off? He never does it at home. We went to the mall today, and he was perfect and didn't touch them.

He watched Green Eggs and Ham for the billionth time today, and the difference was amazing. He actually talked along with the movie the entire time, with new words he has never said before. Full sentences. True, he was only echoing, but he must be hearing better, because he never did that before and we've watched that video so many times it's ingrained into my brain.

He doesn't mind the aids being put in, doesn't seem to be bothered by them at all. He's adjusting really well. I'm very proud of him, he has put everyone's gloomy predictions of failure (including mine, shame on me for being a pessimist) to shame. I'm very proud of him. He asked me for his "ears" this afternoon after nap time. Very cool. He's such a good little guy.

The aids survived their first real test- the playground at the mall. Running, jumping, falling, climbing, rolling around- and they stayed put. They also survived Jaymes helping me feed Lucy The Previously Emaciated But Now Obese Horse. He was easier to keep close outside, I did not have to bellow at him and make my neighbors shake their heads and dial the child abuse hotlines, he actually responded to his name from a distance. Good Jaymes. Good Jaymes' Ears.

We like the Ears. Jaymes tolerates the Ears. All in all, it's going well.

Now that I've said that, he'll probably flush them down the toilet in the morning. We shall see.

Monday, November 2, 2009

A Cop Out Post

I have a post I started writing the other day, about therapies and who should choose when it's time for discharge from therapy, however it's not done, and I had to write a paper for my English class, so here ya go. It's Jaymes and autism related, so it's not such a bad cop out I guess. Did I do good? What grade would you give me? I have all 100's on my papers in that class except for one, it's a 97 and that pains me... Pains me I tell you. Anyway, without further ado:

Our son was diagnosed with autism on November 11th, 2005. He was two months shy of his third birthday, but he had still not said his first word. Instead, he screamed and grunted or zoned out entirely and ignored the world around him. His idea of a good time was to lie on the carpet in his bedroom and stare at the ceiling fan. We went into the Early Steps office already somewhat educated about autism. I had started researching his odd behaviors, and had quickly realized that he showed nearly all the signs. He was a textbook case; it wasn't a hard diagnosis to make.

My husband and I reacted very differently to the diagnosis. I had been expecting it, and being more practical than emotional, threw myself into researching treatment options and information. I started scheduling therapy sessions with the local physical, occupational, and speech therapy centers. My husband, on the other hand, was firmly in denial. The very first time I had mentioned the possibility of autism he had laughed at me and said of course Jaymes didn't have that. He was fine. His opinion didn't really change, even with a formal diagnosis. He decided that the doctor was a quack, just looking to make more money off a late bloomer of a child and his gullible mother. In time, Jason did come to terms with the diagnosis, but that created its own set of issues.

I've read somewhere that statistics show a large percent of marriages fail due to having a special needs child, and I can understand why. Jaymes' autism did have a huge effect on our marriage. My husband and I disagreed (and still often do) on the best course of treatment, on how he should be disciplined, and about money. We fought endlessly over how Jason was supposed to keep a job if I had to take Jaymes to all these appointments. He was not even sure there was any point to the therapies, and at some times wanted me to stop them all and let Jaymes be whoever he was going to be. We fought because I could not work. No daycare center would take Jaymes, and he had 6 therapy sessions per week. Every job I had, I lost due to my excessive number of absences and sick days. Autism started the whole unravelling of our marriage.

My life began to revolve around Jaymes. I couldn't work, and he had not started school yet, so we spent all our time together. My husband worked more and more, so I barely saw him. It was at that point I really began to live and breathe autism. I read about it online every chance I got, I went to therapy sessions and autism playgroups and even the autism parents support groups. I realized that I really wasn't like most of those parents, because they all talked about autism as if it were a curse and a horrible thing, that their children were flawed and ruined as a result. Life with my son was hard on us, but I guess in my opinion Jaymes was who he was. I chose to go with that, and try and develop his skills rather than obsess over the child I never had. Being sad didn't do anything for Jaymes, so I didn't see a point to it. There were times, though, that I got too into the reading. I kind of lost sight of the child, in my eagerness to learn more about the diagnosis. It was a hard realization but one that helped me see that I needed to get off the internet and spend more of my time and energy on my kid.

When Jaymes was three, I got pregnant with my daughter, Sierra. If you think going through a pregnancy with a typical three year old to take care of is difficult, you cannot imagine going through a pregnancy with an autistic three year old. Around 25 weeks pregnant, I slipped and fell while chasing Jaymes, and broke my tailbone. The impact also apparently set off preterm labor. I was put on bed rest, with instructions not to get off the couch for anything but the bathroom. Of course with Jaymes, this was impossible and I had to be active. I went into labor again at 28 weeks. This time they had a lot of trouble stopping it, so they transferred me to a hospital an hour away that had a NICU. They needed me in bed and monitored, with an IV that ran drugs to keep labor at bay as long as possible. Obviously Jaymes couldn't stay with me at the hospital, so my husband had to take a leave of absence from his job until I was discharged. They sent me home at 30 weeks, and a few days later I again went into labor. This time they couldn't stop it and Sierra was born, weighing just around four pounds. Surprisingly she did not have any issues other than her size. I can't help but wonder, though, if my pregnancy would have gone smoothly if Jaymes had not been around.

As he got older, Jaymes developed little quirks and habits that slowly changed the way the entire family did things. We no longer used umbrellas, because he was obsessed with them and would go into tantrums that lasted hours if you took one from him. We panicked at the thought of sitting in a doctor's waiting room on a rainy day, because we knew there would be umbrellas galore. Another change involved where we went to eat out. We learned over time that Jaymes has a very hard time with small, crowded spaces. So KFC was out, because the combination of a tiny restaurant and lots of noisy customers was overwhelming for him. Instead, we went to places like CiCi's pizza. CiCi's pizza is perfect because it has a huge, open dining area and there aren't usually a ton of people there.

I think the biggest effect Jaymes' diagnosis has had on us is in how we think and react. When I see a kid in a store screaming, I no longer immediately think "wow, that kid is a little snot. Look at him having a fit." Instead, I wonder to myself if the child is special needs. Autism is one of the more difficult disorders, because it's invisible. Unless you know what you're looking for, an autistic child just seems like a horrible little brat, when in reality they are highly sensitive kids who are trying their best to function in what is often an overwhelming environment.

Jaymes taught us to stop caring what other people thought of us. I used to be so afraid that when he had a meltdown, people would look at me funny. Now I just shrug it off and keep walking, or I explain why Jaymes is doing what he's doing. He doesn't embarrass me, and I don't keep him hidden away at home. We're out every day; he is part of the family doing the same things any regular kid would have to do. He goes to the grocery store, the video store, the mall. He comes with me to the Social Security office, or to the doctor, or wherever else he needs to go. He's taught me that there is only way to really secure a place in society for people like him, and that is to involve him in every possible way.

All in all, Jaymes' autism made our family a better one. It's because of the trials and tribulations we have faced that we have grown so much stronger. I know that I've grown tremendously as a person. Doing what I needed to do for him helped me go from being an incredibly shy person who could not even make phone calls or walk into a store alone, to a mom who can sit at an IEP meeting and assertively make the decisions and push the limits to get Jaymes what he needs and what he deserves. I thank God every day for bringing the little guy into my life, and I can't imagine life without him.

Thursday, October 29, 2009

Who decides when it's time to stop a therapy?

I'm not going to go into specifics on what prompted this particular post, but I think it is a really good topic of discussion, and I would appreciate any opinions or personal experiences (lurkers, that means you!).

If your family is anything like mine, you have a child who goes to at least one therapy session per week. Some people, like ourselves, have three a week. Others have even more. Speech therapy, occupational, physical, ABA, TEACCH, and the list goes on and on. And if you moms are like me, you get used to a specific schedule, with a specific therapist. You get to know the therapist working with your child, and eventually you either click or you dont. When you do get that click, you end up with a relationship that is beneficial for a lot of reasons- The therapist teaches you how to do things at home, the therapist takes into account your own experience and knowledge of your child (which a lot of therapists do not do, until they realize that we moms ARE smart enough to take seriously, even if we don't have degrees), and it becomes possible to really create a "program" that all carries over from therapies, to school, to home.

Not only this, but you also develop a schedule that is very complicated. It's hard to arrange everything else (school, appointments, jobs, college) around a few therapy sessions. Plus,there is the issue of transportation, if you only have one vehicle. Luckily for us, there is a van service in NC that is paid for by insurance, but even that has to be painstakingly organized. It has taken us over a year to actually fit in nicely with the van service's schedule/ No more sitting around for hours, or wondering if we'd be picked up at all. Everything has been set, it's all in sync with everything else, and changing it would be a royal pain the the rear.

So my question, to you readers, whether you're moms, therapists, or both, is this: Who should decide a child is ready to be discharged from a particular type of therapy? Should the decision be one made solely by the therapist? Solely by the parent? A combination of the two? And when there is disagreement, what then?

There are a lot of reasons behind situations like the one I'm vaguely describing. Paperwork with certain insurance companies is a pain. I've heard from a couple of friends who work in fields where Medicaid billing is concerned, that they're discharging patients (mental health, so not quite the same thing) because the recent Medicaid changes require prior approval for EVERYTHING, and a whole lot of paperwork too. Personally, I think this is a BS excuse, I'm sorry, but these professionals make a whole lot more than the rest of us- that's part of the job. NOT saying this is the reasoning in every case, but it does seem to be in some cases.

I guess different facilities might have specific requirements as to what skills they can work on. If this is the case, then I can understand a therapist discharging due to lack of new skills to teach. But, in that case, it would be useful to know what the guidelines of the facility are prior to entering therapy, and also to get more than a month or two's notice. More on that in a second, back to my point. If a facility only allows therapists to work on certain types of skills, it all makes sense. But to just say there are no more skills to work on, with no other reason, really confuses me. What about writing skills? Or more fine motor skills. How about working on self help skills? With autistic kids like my son and his little blonde buddy, you never run out of things that need work. They don't get "perfect" and 100%.

Anyway, speculation on reasoning aside, if discharging a child must be done, I think there is a certain way to go about it. Notice is important, because I don't know a whole lot of moms with kids like Jaymes who are going to say "Oh, he's done with therapy? Ok!" Nah, the first thing any of us will do is get on a waiting list for another facility. Except those facilities have waiting lists 6 months long. And that's if you don't have a specific day/time that works. Good luck trying to find an opening for a therapy session on Tuesdays after 5pm. It takes months and months being AT a facility before you even get that coveted time slot.

As moms, we know how our kids will react to things like leaving therapy. We generally have at least a good idea of whether they'll regress and lose skills. So we start freaking out realizing that therapy is going to end soon, and there is not a SINGLE facility with an opening at a time that works. Cue the anxiety.

Anyway, don't mind me. I'm just rambling at this point. The question remains, though: Who gets to decide a child is "done" with a therapy? Because I'd really love to know.

Saturday, October 24, 2009


Ah, October. The weather is cooling down, the trees are changing colors, the leaves are covering up the horse manure in my pasture, which for the record makes it a royal pain in the rear end to clean up. Moving on... Halloween is in the air!

Now, last year was the very first that Jaymes really got into. Up until then, Halloween had been one of those "aww man, mommy is cramming me into a pink bunny suit and I'm a boy, please save me" holidays. But last year, Jaymes finally made a connection. He figured out that those big orange pumpkin buckets are there for more than just cramming his blanket into. He discovered (with much excitement) that when he rang a doorbell, while dressed as a dragon, the nice old ladies in the houses would give him handfuls of CANDY. His hoarding instinct quickly took control, and he gleefully filled his bucket with candy until it was too heavy for him to hold. And then do you think he gave it to mommy to hold? Not exactly. He let me hold it, but he kept one hand on the side of it at all times.

For days afterward, he attempted to get people to give him candy. He would approach, his pumpkin held out, a hopeful expression on his little face. He would squeak out "trickortreat" and wait. Nothing. He'd say it a little louder. Still no luck. Finally, he would bellow at the unfortunate sucker "TRICKORTREAT" and stalk away. Eventually he figured out that he would just have to give up.

Jaymes has started to realize that Halloween is back in town. On Friday night, I was driving home after dark, and we passed a house with one of those huge light up Jack-o-Lanterns stuck to the front of their house. I don't know if it was the size, or just the effect of a huge pumpkin blazing out of pitch darkness, but when we drove by, Jaymes went crazy.


Fifteen minutes of Jaymes babble (not a lot of real words, it's a jibberish he does when he's excited) later, he was still overjoyed at it. It cracked me up, because at the time I thought something was wrong. You would have had to hear the sheer urgency in his voice, then the excitement, to fully appreciate it. Jaymes does not show that kind of enthusiasm often, it was really neat.

So the plans for this year are about the same as last year. Carve some pumpkins at the last minute, feed the scraps to the horse, who will be very pleased. Take photos of horse eating pumpkin. Take photos of Sierra and Jaymes feeding pumpkin to horse. Sierra will be a St. Bernard dog this year. Jaymes will be a dragon yet again. It still fits him, and he likes it, and it's warm. I also could not find a costume in his size that was not paper thin and tacky. He's an odd size- too big for the toddler costumes but too small for the boys costumes. So the dragon it is. It really is a cool costume though. I will be a hassled mommy. My husband will be a grump with some OCD issues. I thought about getting doggie costumes and bringing Echo and Midnight with us, but then I figured they wouldn't appreciate being a shark and a hotdog, and abandoned the idea.

Trick or Treating is obviously on the agenda, in my mom's ritzy neighborhood. Last year I got freaked out by a teenager dressed as Sarah Palin, he scared the bejeezus out of me. Hopefully we won't have a re-run of that one. Jaymes will have a blast, he understands how to trick or treat. My only concern is the one we always have- keeping him calm, and slowing him down enough to not bolt or take from the other kids, or scream. Hopefully he will be able to handle things, he really does love to collect candy door to door.

Wish us luck!

Thursday, October 15, 2009

So, is it always guesswork?

Or are we just special like that? Last week Jaymes had yet another hearing test. For those of you who have not followed the never ending saga that is Jaymes' possible loss of hearing, I will give you a quick rundown. Hearing test, hearing test, hearing test, hearing test. None conclusive, because well, he's autistic! Big shocker there! More hearing tests, hearing tests, hearing tests. Sedated ABR test. Behaviors can't screw those up, because they're asleep. Results showed mild to moderate hearing loss. Didn't seem to match up to everyone's "real life" experiences with the little man. Another hearing test in the booth. Bad behavior. And finally, one more booth test. Sucess! Candy, bribery, and medication got us a good test. According to the fine ladies at the hospital, Mr. Jaymes has moderate hearing loss where high frequency sounds are concerned. But they weren't quite sure. But pretty sure. Or something like that. Mommy? Not sure. Speech therapist? Not sure. OT? Not sure. Nobody has a clue, except Jaymes, and he isn't going to spill it.

So Jaymes will be wearing hearing aids. Green ones, to be exact. He chose his colors. Always green, everything has to be green. Jaymes loves green. Maybe it makes him feel one with nature. You never know.

And now, my question to my fellow mommies, is this: Is it always a "maybe, maybe not?" where hearing is concerned? I guess I just cannot decide if we're doing this hearing aid thing because everyone is grasping at straws, trying to look like they're managing things, or if we're just adding another expensive electronic device that won't do a damn thing. Or worse, make things worse. I just don't know. The hearing thing is something I have never had to deal with, so letting me make decisions about it is worse than the blind leading the blind.

Do any of you have kids with autism and hearing aids? Or just hearing aids? How do you know if your little one needs them? How do you know if they're set too loud, or not loud enough? How do you keep them ON the kid?

I just have this little nagging feeling that this is a result of looking way too deeply into Jaymes ignorning of things that aren't interesting, and that I look like a moron for going along with it. Do I think Jaymes needs hearing aids? I don't know. He seems to hear me, but then everyone who talks to him does so loudly. So he DOES have functional hearing. However, what if the hearing aids can make that hearing which is just functional, into something that really develops his speech and helps him communicate more clearly? It's so hard. I guess I'm just wondering why it's always guesswork, and never an exact. I want to hear "Jaymes has hearing loss. This is how it is. We know for sure." or "Jaymes does not have hearing loss. We know this for sure." I'm sick of maybe, possibly, we're not sure. I want to make the right decisions for Jaymes, but I can't do that without understanding the nature of the problem.

That said, Jaymes is doing pretty well. He got off the bus yesterday in a great mood, just talking up a storm. Long, loud, very serious streams of language. "Mommy, mommy, like hot fire at the fair. Popcorn shrimp, chicken, lobster. Chicken tenders. Smash. Pepsi." Because he saw a blacksmith exhibit at the fair, and because we took him to Red Lobster with us last week for our anniversary dinner.

I have a really cool kid. The boy understands just how important the words "popcorn shrimp" truly are.

Tuesday, October 6, 2009

Thoughts on "1 in 91"

Being TV-less and also newpaper-less, I have been in my own little world of late, so forgive me if this is old news. I have not had a whole lot of spare time, and what time I have is spent sitting in a classroom or cleaning the house, or scooping horse poop out of the pasture. Anyway, my mother in law mentioned the new stats a few days ago, and then I found a thread discussing it on one of the horse forums I frequent. While I remain ambivalent on the specific topic, other issues came up in the conversation on the forum thread.

"Sorry I just don't believe that many kids have "autism". I believe they put every eccentric kid on the "spectrum". Seriously the definition is so ridiculously broad. Half my family would be on the "spectrum". Why do we have to label everyone?"

Can't really argue, as far as the broadness of the spectrum is concerned. It is very broad, and it kind of has to be. Autism is a disorder that is different for every child- it's not a cookie cutter kid diagnosis. Every kid has their own symptoms, their own behaviors, their own quirks. Some kids are savants, some kids will never get out of diapers. Some kids love music, some love lights, some hate stimulation of any kind. Some feel pain, some don't. You have to have a broad spectrum to include all these kids, don't you? I don't believe that half of this woman's family would be on the spectrum, and if that were true, I would sincerely hope she had made some effort to get some evalutation and help if needed, for these family members.

"Well the issue now is they put kids who are a bit different on the "spectrum" now. So if your kid is prone to tantrums or hates loud noise. If he or she has "different" types of knowledge than the average, if they enjoy making lists or lining things up, they are on the spectrum.

I see a LOT of kids. When you see a truly autistic child... you know it. It's unmistakable. Some of the kids i see on the "spectrum" are really very normal kids with some odd behavior. You may have to handle them a little differently but I'm not convinced labeling them and treating them very differently is a great plan. No kidding I have family members who would be on the spectrum by the definitions I've read. They are perfectly "normal" adults who never had special treatment.

I'm a little put off by our desire as a nation to give every difference among people a name and a treatment plan."

Most of the time, Jaymes fits this stereotype. Most of the time. Sometimes when he's calm and happy, you really can't tell. I know quite a few kids with autism who are very severe, and sometimes you still can't tell. Now, if you hang around them long enough, it's becomes apparent, but you can't always detect autism at first glance. As far as "normal" kids being given an Aspergers diagnosis... I guess I just am on the fence. On one hand, I agree that some of the adults I have met who claim themselves to be Aspergers seem just fine, and it irks me when they use it as an excuse to be bitchy. However, in Aspergers kids... I trust parents. If the parent thinks something isn't right, it probably is not. That's just the truth. Parents know their children, and I don't think any of us are likely to go to the effort of getting a diagnosis as final as autism or aspergers if it isn't true.

"And you would be surprised how many parents WANT their kids to be special needs. It gives them excuse to be bad parents. "There was nothing we could do. He was born with Austismdisorderwecantpronounce so there was no stopping him from setting those fires and stealing those prescription drugs."

Yes, it's SO much fun to be the parent of a special needs kid that parents everywhere are clamoring for a diagnosis. Whoo! the excitement of constant doctor and therapist appointments, the diapers on kids way past diaper age, the meltdowns in public. What a blast. People who make comments like this have no clue. Most of the autism parents I know do not medicate, nor do they make excuses for their kids behavior. My kid has autism, it gives me an excuse to be a BETTER parent, not a neglectful one. An autism diagnosis signals the start of yearsof hard work and struggle- hardly an excuse to be a lazy parent.

"Just to be clear I totally get that there are kids with this issue. I even get that there are varying degrees of autism. However... I see kids labeled on the "spectrum" that really are totally normal in their eccentricity. Sure not like all the other kids. Maybe a bit ummm odd. But normal enough for sure. Easily normal enough not to be labeled.

The grandson of one of my dear friends was labeled on the autistic spectrum because he had a fit over shirt labels. He would freak over it. He had other little tactile preferences that would cause him to tantrum but honestly he operated totally normally in every other way. I said at the time "so take the damned labels off his shirts and be done with it". I couldn't see why anyone would want to give a kid a label over what amounted to a bit of a obsessive preference."

A label is like a Disney Fastpass. A label gets you on that ride faster than you'd get on without it. With autism, early intervention is key. The label is necessary sometimes.

And then the comments go into people posting the "signs of autism" list and picking one or two traits off of it that resemble their own quirks, then saying "Oh well I must be autistic too." This is ridiculous. Kids are not diagnosed by having one quirk. A kid who spins in circles does not necessarily have autism- he might just like spinning in circles. A kid who can't sit still could have any number of issues, beginning with being a typical 3 year old. It's when a child resembles EVERY sign on that list, that you get a true diagnosis. So no, just because some 19 year old on the internet doesn't like loud noises, doesn't mean she's autistic.

"Cripes.... Reading some of the "defining characteristics" of autism.... I guess I'm autistic.

So are they actually trying to stick children who will only wear one shirt or one hat etc into that label? I know very few children who didn't go through some sort of stage like this. My brother had the "jungle shirt" phase, the "cowboys hat" phase and the "actual cowboy hat" phase. He refused to take any of these articles of clothing off or wear anything else without having an absolute meltdown. He grew out of it after a month or so for each episode.

I like/liked lists, categorizing things etc. I have a lot of fun playing games that involve these cocepts (bejeweled, noah's ark etc) If a lot of people didn't like doing these things, those games wouldn't be there for us.

I dunno, I think it's oversimplification. It makes it harder for those of us with REAL issues to get the help we need and be taken seriously. I get looked at funny and criticized when somebody knows I have ADD or am Bipolar(II). It's frustrating, my mom and teachers never wanted to put me through testing because they didn't want me falsely being categorized, and I had to do it on my own. Now I'm so much happier for the help I've gotten, I just wished it had been sooner."

Apparently autism isn't a REAL issue. Someone should tell our kids this, eh?

"when you look at the lists of clinical symptoms for a condition, some of them are vague, and yes, it can be hard to differentiate them from "normal but atypical" behaviors. Part of that is because we diagnose based on categories, but real life isn't categorical - it's a continuum. Also, a "clinical" diagnosis (one based on signs and symptoms and evaluated by a physician, not on a laboratory test) usually requires meeting a set number of those symptoms, in recognizable patterns, not just one or two.

For example, I have several recognizable symptoms of a genetic condition called Ehlers-Danlos Syndrome, which is a collagen defect - but I don't "have" EDS because I don't have enough of the symptoms to make a clinical diagnosis (yes, this is what we do in the office for fun... diagnose BXM with genetic conditions ). However, if the diagnostic criteria were to change to include other symptoms or patterns, I may indeed "have" EDS. There is a laboratory test for EDS, but it's confirmatory, not diagnostic - were I to fail the lab test, I could still "have" EDS based on the clinical diagnosis.

It's also remarkable what a good doctor can see - my boss immediately recognizes amazingly subtle assymetries in facial features, for example, that are meaningful but not necessarily that "different" from "normal." His diagnoses are based not just on the clinical symptoms but on the entire gestalt of the individual patient presented to him. A good physician will not diagnose autism or ASD based just on a list in the DSM-IV - otherwise computers could be doctors. "

Running out of time, jaymes is almost done in PT and will be out here in the waiting room- so I'll end with that good post above!