Medicine Drama - Update

DEE's been on Zoloft and the clonodine patch for a month now, and he is doing very well on both. Blessedly, we have, as a family, gotten a bit of relief from the fever pitch of DEE's existence. He can now sit down and do things. For more than three seconds at a time.

The "problem" if you will lies in the patch. We put it between his shoulder blades so that he can't reach it. Smiley, however, can. And DEE has taught Smiley to remove the patch before its week life span is up. Which means we're going through patches at a rate of 1 every 4 days. Now, one hand, I'd love to praise DEE's critical thinking abilities and problem solving skills. I'd love to praise my sons for working together in a cooperative manner.

_BUT_

This medicine is freaking expensive. And it makes a HUGE difference in DEE. Within about 4 hours, you can tell a distinct difference. So no praise.

P.S.

(In my room, behind the closed door, I celebrate this step! I promise I do!)

Medicine Drama

I know, I know. I was totally one of those people. One of those, "I'll never put my kids on drugs" people. Thinking that medicine was a cop out to "real parenting" (which is WHAT exactly, I sureashell don't friggin know!).

That Was B.D. As in Before DEE_structor. You see, DEE has a couple of twitches, or "stemms" as we like to say about folks with autism. He really likes flapping his hands; he'll be the first person to make a self-powered flight. He has some serious wrist power. The probelm with this stemm is that he may, albeit unintentionally, knock your friggin-ass out. DEE is not exactly aware of his body's relationship to space, people, cups full of chocolate milk.

And yet, that's not the stemm that makes me lose my holyeverlovin' mind. It's the noises. As in, a honking/grinding sound that reverberates in my hollow skull. As in, a high pitched sustained "whoooo-ooooooo-oooooooooop" that changes between 3 tones at a glass breaking, nerves shattering, dearheavenplease-don't-do-that-while-I'm-driving levels.

We are trying medication. First, we tried Focalin. Massive Fail. DEE is a very loving little boy, not really prone to aggressive behavior. On Focalin, he turned into the Incredible DEE-Hulk. Full of rage and showing it all the time.

So then we tried Tenex. The only effect it had on DEE was that he peed. Uncontrollably. All the time. No Tenex = no wet beds, no accidents at school, no accidents in Grandma's brand new convertible. (Seriously - he loves her car. And when he lost control of his bladder, he made an EPIC Niagra Falls potty break. No extra clothes, no towels = one mostly naked kid wearing this momma's green sweater.)

#3 - Zoloft. We are just now at the end of Week 1. The only effect so far is that DEE's noises are somewhat abated. Whether that's the medicine, or he got tired of watching his momma looseherfreakingmind, I don't know. We'll see.

As a futher side note, DEE is supposed to wear a medicine patch that delivers 1 mg per hour of clonodine. He won't even wear a Mickey Mouse or Thomas the Tank Engine band-aid when bleeding. I don't have a clue how to get him to wear a patch. Put it on him while he's sleeping? Maybe? Ideas? Thoughts? Suggestions?

Are You Kidding Me?

I spoke with a woman, Y, yesterday about scheduling an appointment with my company. Y said that things were overwhelming right now, since they had just moved up from Orlando, and her son, who is autistic and has seziures, is having problems at school.

Anyone says "Autisic" to me and I am ready to throw down and talk. So I mentioned that I too have an autistic son in school and what kind of problems is he having?

Y told me that the school he attends considers him a behavior problem and wants her to allow them to send him to jail when he acts out. *Deep breath* Say what? They want you to send your autistic son to jail? Are they out of their minds? Sending any kid to jail is a pretty darned drastic measure, if you ask me (though I will grant that there are some cases where it is totally warranted). An autistic child? Someone who can't speak clearly and always control their actions and you want to send that kid to the pressure cooker of jail.

Then Y said that her son had been off his medication for a month because she did not know who to turn to now that they have relocated. Y got my complete list of people DEE sees on a regular basis and phone numbers to boot! Hopefully, she made a bunch of calls yesterday and is on her way to helping her son have a better school experience.

As for the heifer that wants to send a kid to jail - she best be glad I don't know her name. Or I might be spending a night in jail.

The Divinity of Coincidence

I was running late, which is pretty typical of me, to take Dee to school. Fortunately, since we are going to a private, ABA therapy place – they are not as big of sticklers for punctuality as public schools. It’s my money, if I want to waste it, that’s my business.

Dee loves school. This is second year of full-on, all school day intervention. Last year, he liked school, but this year! Oh, Vive la Différence! Dee loves school. He loves his teachers. He loves to get up in the morning. He volunteers thoughts like, “Take a shower and then school.” Yes, my little love. First, we take a shower and then we can go to school. With a quick pause in between for that pesky getting dressed and eating breakfast part of the morning.

Back to the part about me being late (again). There was another mother who was also running late. She called out to me as I was about to get into my ‘Burb. “Hi. You probably don’t remember me but we met at SE’s wedding a few years back.” I remembered her. Of course, I remembered her. We had a really great time talking about babies, with my impending birth to Dee fairly evident, and her fairly new baby boy in her arms. I did not remember her name, that would have been too awesome if I had, but I remembered the name of her son, M.

So we stood outside the school and had a nice chat. About the school. About the boys. About the program that Dee is in. It turns out that her son, M, has been in class with Dee’s teacher’s daughter, Lulu. Lulu and M have been buddies from the get go apparently and they play together in the afterschool program too. My newly rediscovered friend, T, told me to let her know if Dee joined the after school program so M could “protect him, too.”

T & M spend a good bit of time talking about people and people’s differences. She said, “If one person has trouble playing soccer, then you help that person. You help him to become a better soccer player. And you remind him of the thing that he does do well.” It’s a really important part of her life lessons to M. She grabbed her cell phone and gave me her phone number with a stern admonishment to call her if we need help picking up Dee or if we wanted to hang out while we were in her area of Lower Alabama.

And then we hit the cars and drove our separate ways. I sat in my ‘Burb for a long minute. Here was a woman I’d met almost 7 years ago, for one evening, who out of the blue stopped me and offered her help, or her ears, for whatever kind of support I needed. What I needed was to remember that I am not alone on my journey with Dee. Not even just supported by my family, but by people who are willing to listen.

“Coincidence is when God chooses to remain anonymous” – He’s only anonymous if you forget to thank Him.

Thank you, Lord. Thank you very much.

I Want to be a Dentist!

Well, not really.

I want to take Dee to the dentist. We're are not as good abot teeth brushing as we should be. *ahem* So I want to visit the dentist with him. Can I just tell you that the last two times I have tried this with him - it was a complete disaster. Massive meltdown + zero cooperation. New plan, new dentist. Bay Pediatric and Adolescent Dentistry in Fairhope. (I'll post his info in a minute.) Dr. Trey Fellers, (in addition to being cute) you are an Amazing Super-Dentist. Y'all - my son, who would not open his mouth for anyone - allowed this Super-Dentist to clean his teeth. I was like shut-my-mouth! Dr. Trey talked to DEE the whole time. DEE opened his mouth, and then he screamed. And Dr. Trey just shrugged. The hygenists shrugged. Dr. Trey sang to DEE so that he would know when the song was over he was done. Flossing to the ABC's. Dee watched the movie going on in the ceiling (TV's in the ceiling tiles. I was so excited. Finally! That's where you stare when you have your teeth worked on, after all!) DEE's teeth were cleaned, flossed, fluroided, and finished before I knew it. If you live in Lower Alabama - this Super-Dentist is the guy for you!



BAY PEDIATRIC & ADOLESCENT DENTISTRY
115 Lottie Lane Fairhope, AL 36532

P: (251) 928-5045 / F: (251) 929-3335

baypedo@yahoo.com

http://www.baypedo.com/

We love You!

T-Ball Update

This is DEE's favorite part of the game, where everyone gets together and puts their hands in, and shouts "Go Team". DEE has played several games now with mixed results. He really likes being in the dugout with the other boys. I can see him think about how to talk to them, and just not have the ability.

For example: Rock was late getting to practice on evening and so Smiley and I had to accompany DEE on the field. (Doing that with Smiley was crazy, he just wanted to walk and explore. Thank God for other people's kids. One of the big brothers volunteered to chase him. Bless you, sir!) DEE stood in line to await his turn with Coach. He noticed that P in line behind him was wearing a Spiderman T-shirt. Dee tried to say something to P about Spiderman, but he didn't have a script for it in his head so it came out all garbled. But he tried! I was so happy! I tried to help P understand what DEE was trying to say when P Dad jumps all over the kid. Dear P's Dad - thank you for squashing what little interaction my son was reaching for. You have a great, funny, neurotypical kid - cut him some slack. Seriously!

I could have just hit that man upside the head with my Winnie-the-Pooh diaper bag! I guess it was written all over my face because P's Dad backpeddled a bit and told P it was okay to talk to DEE. Yes, I understand all about attending to the Coach and making sure that we were following instructions and BLAH BLAH BLAH... but DEE was reaching out. An impossibly hard thing for him to do and he was giving it a go!

P still tries to talk to DEE a little bit. All the boys try to listen if DEE is actually trying to talk to them. It's pretty amazing. Did you look at the picture? See #2 there? He has a brother that is an ASD kid, too.

Training For The New

We are getting ready for something completely new and different . . . T-Ball! DEE got signed up for ball last Saturday and now, every day that we have good weather, you will see us all outside practicing basic skills. Now, when I say basic skills, I mean from the very beginning. "This is the dugout. We come here to sit on the bench. Can you sit on the bench with us?"

So we have to name every single thing: base, bat, ball, tee, field, everything! We had him practice hitting the ball, wearing the batters' helmet and running the bases.

Well, Momma had him run the bases simply by taking his hand after he hit the ball (all 17 inches) and run to first. Eventually, the ball has to make it a distance of 15 feet. We're starting off slow, but I'm sure he'll catch on. For once, DEE did not resist this new thing. The helmet went right on. There was some finagling of the chin strap, but he was willing to try. Rock drew a batters box in the dirt with an X form DEE to stand on.

We are trying to think ahead to what may cause DEE problems. Noise is going to be a major factor. It's not like I can ask other parents to cheer quietly. (Believe me, I did consider that, but there's usually lots of games going on at different fields at the same time, so what would be the point?) I'm trying to figure out a way to get him used to the noise, anyone got a suggestion?

Smiley tried his best to get into the action, but since the bat is heavier than he is, it did not work out too well for him. He had to resign himself to chasing balls that Momma rolled for him.

We ended our field experience with a running of the bases. DEE hit the ball, we held hands and ran to first. "Step on the bag," I told him. He stopped, looked up at me completely confused, and then we talked about how first base is also called a "bag" and that he has to step on it every time he runs by it. Then we ran to second. As we approached, he slowed down, looked up at me with a question in his beautiful blues eyes. "Yes!" I shouted. "Step on the bag!" He did and off we went to third.

At third, the pause was less than a moment. He looked down at the base, up at me, and back down to the base. "Step on it!" Both little feet cruised right over that base and away we swept to home plate. We stepped on it together and did a wild, silly happy dance, shouting "Home run! Home run!" Big smiles all around.

He really liked his first foray into the world of organized sports. We'll try everything we can to keep this up. This practice was just Momma, Rock and Smiley on the field (and some nice folks practicing lacrosse that didn't mind being interrupted by our speed racer). If it can go this well with other kids and adults, I will call myself SUPER BLESSED. Meanwhile, we'll practice.