Sunday, June 28, 2009

Keeping Busy & Making Time

Last week was our first week of school vacation- I've been looking forward to it, looking forward to relax and take it a little bit slower. So far that hasn't happened. Corbin had football camp last week, I had to get in some hours at work so we're not positively broke next week, Brian started Freedom Riders, and both kids' therapy schedules changed due to ESY.

Shuttling Corbin to football camp every morning at eight, trying to get home before 8:30 to feed Brian before Amber got here (don't think we were successful even once with this), run to work to work a few hours, pick Corbin back up at 12:30, try to do whatever errands I had (with a soaking kid by the way as camp was in the rain all week and football doesn't stop for anything) but at the same time be home by 1:30 as that is when Brian is done and then whatever therapy we had that afternoon.

A few times this week I found myself cursing that I allowed Corbin to go to football camp- don't I have enough to do with Brian already? But then I step back, breathe, look at our life and realize how important it is that I let Corbin do all these things he wants to do. I never want to look at him and say, "No, I don't have the time or the money because all my time and money goes toward your brother with autism." I NEVER want him to think he is less important or for him to become resentful towards Brian. I want for him to be able to achieve his goals and dreams- whatever they are at the moment for a six-year-old, just like I want Brian to do. I love seeing the joy Corbin gets being busy, busy, busy with his peers- as he is a hyper extrovert as we all know.

The last day of football camp consisted of the Tigerball Championships broken up into two categories 4-8 and 8-13. I took that day off from trying to run around and I just sat on the bleachers, cheered on my little man, gave him high-fives and hugs when needed, and took lots of pictures. Laughed to myself as I saw how committed he was in the first game of the tournament and how by the last he was more opt to be picking grass and playing with his shorts. As we are different personality types it started to bug me that he wasn't paying attention, but he was happy, so I have learned how to let it go and just smile at that little man of mine. His team did go on to win their division and I couldn't be more proud to display his trophy on our shelf in the livingroom. It's moments like these that I hope he remembers and he knows that even though he has a little brother that has special-needs, that takes up a LOT of his Mommy's time, that he is just as special in his Mommy's eyes as his brother is.




*Corbin is on the left of this picture tackling someone- though it's just touch football*





Friday, June 26, 2009

Jumping to Learn

video


**i have been trying to upload this video all week- i was about to give up- my computer is just being super slow this week**

Freedom Riders

Brian had his first session at Freedom Riders this past week. It was awesome, almost magical. He just walked in just like he owned it. He got fitted for his helmet with a little bit of a struggle but not too much. He sat up nice & straight and repeatedly said "horse" everytime they rode by the mirrors. When they took him off at the end of the session he pointed back up to the horse and said "on" spontaneously. Everyone there were so patient and loving- I just love it there- I had tears in my eyes watching him. I absolutely can not wait to continue these lessons with him!


Monday, June 22, 2009

Cassanova


That's my son- all year long he came home with countless amounts of love notes- I fished these out of his backpack on the last week of school. Decided to take a picture before he made me throw them away- he gets rather embarassed by them and insists he tells all the girls to write "like" not "love". He'd be really mad if he knew I was sharing this with the whole world- so don't tell him ;)

Friday, June 12, 2009

End of Week One

So this was the end of a not-so-successful week one to our new approach to Brian's troubles with bowel movements.

We started the plan last Friday. He had two successes and two accidents on Saturday. Since then he has not had a bowel movement. This is a pretty regular kid- everyday he'd have a BM. So this is not normal. Before we started this new plan Brian's pediatrician had prescribed him Miralax- we started it on Tuesday after a couple days of no BMs. Still nothing. We doubled the dose this morning and our doctor wants us to go in for a special Sunday visit if he hasn't had one by then. Amazingly, he has been in great spirits this whole week- gassy, a little more distractible than usual, and a poor little extended belly- but in a really good mood.

He's at his father's this weekend. Which could be a whole other vent, but I'll keep it simple, as I try not to drag that drama into this blog. I informed his father of our behavior plan and offered to send him all the materials we were using, emphasizing how important it is for Brian for things to be as much as the same across the board for him to be successful. His father responded that he doesn't need anything from me because he never has an accident there. Just like he never use to pull his hair there, or hit his head, or he use to talk in sentences before he was even imitating words here. I don't know if he is severly in denial still of his child's diagnosis or just does it to completely peeve me off. Either way I'm so tired of it. I just wish he would understand none of this is about me and him- it's about Brian- and we NEED to do what is best for him.

I'm worried that either Brian won't be under constant surveillance and he'll end up having an accident or that he will have a success and won't get the reinforcements and rewards that he needs to know what an awesome smart boy he is!

It's out of my hands though, and I need to just stay positive, keep my fingers crossed that he DOES go poop- as I'm worried what his poor insides are feeling at this point, and that his father does follow through. Positive thinking does wonders. At least it may get me off the couch, wallowing in worry, as I admit, I sometimes do on these weekends, and get something done this weekend- lord, knows my home needs some cleaning- especially after a week off just being one-on-one w/my boy every second of every day lol.

Wednesday, June 10, 2009

Rescue Family Grant & A Funny Shirt

I was just visiting Generation Rescue and learned they are now accepting applications for their Rescue Family Grants. Please pass this on to anyone you know who hasn't had a chance to see a DAN! doctor yet. They are giving out 250 grants and applications need to be submitted by July 15. Grantees will recieve at least two doctors visits, as well as 90 days worth of supplements! They are hoping the grants will eventually include some laboratory tests as well!

Also at Generation Rescue I found some shirts that I hadn't seen on there before with a very funny, at least I found it to be so, line- "Dear Amanda, I'm proud to be a parasite!" Check out my blog- Fourteen Studies - if this line doesn't make you laugh.

Response to Newsweek

A good article in response to Newsweek's "article" on Oprah and non-traditional medicine. Check it out- http://www.huffingtonpost.com/claire-shipman-and-katty-kay/did-anyone-else-think-the_b_212819.html .

Sunday, June 7, 2009

Safety First

Yesterday we took the boys to the annual Bike Safety Rodeo. The Kiwanas have been putting this on for a loooong time- as I remember my Dad taking me when I was in my tween years. It was broken up into nine different stations which included bike repairs, helmet fitting (and you could buy a helmet for $5!), crossing the road, avoiding "rocks", watching for cars, etc. Also at the school that day they were doing a free child identification program inside the school that included fingerprinting, DNA, pictures, and videos- all the materials given to the parents at the end for their own records just in case, god forbid, anything ever happened. It ended up being a long morning but both boys did really well! Of course here are some pictures for your viewing pleasure.






By The Shore

More ocean pictures from last week- the weather has been beautiful here, yet STILL not warm enough to go swimming, so instead we have enjoyed spending some afternoons searching on the beaches for seaglass, shells, and hermit crabs.









Friday, June 5, 2009

Five Steps to Potty Independence

Today we are going to be starting a behavioral plan revolving around Brian's misuse of the potty when he needs to have a BM. I'm very apprehensive about this- though I think it will work- but implementing such plans are always so hard- on him and on me.

So the five steps of the potty plan are:

* No time alone- that's right, we're going to be attached at the hip, putting a baby gate at the bottom of the stairs- so he has to be on whatever level I'm at- don't be surprised if you don't see me blogging as much during the next week or so, however long it takes. This isn't going to be an easy task- baby gates don't hinder him- this is the boy I found on top of the water heater, with no chairs or anything nearby to give him a boost.

* Sitting on the potty at all times- even when peeing- this is the only step I'm not really fully on board with. This is going to make him extremely mad as he has figured out the peeing part, no problem. I think he'll be upset that we are making him do it the "wrong way" and also are we going to have to "retrain" him to stand after we make gains in the BM area? I'm going to address these concerns with Allan this afternoon before we officially start.

* Reinforcer- I'm taking away his two most preferred items- trains and his VSmile- and he is only going to get them when he successfully poops on the potty. I don't think this will actually bother him too much- usually for him, out of sight is out of mind. I do think he'll be VERY excited to see them come out when he's had that successful potty trip though. So not too worried about this step.

* Picture Schedule- I took pictures last night of him entering the bathroom, sitting on the toilet, the actual poop in the toilet (and I have discovered that I have a really bad weak stomach all of a sudden), and pictures of his reinforcers. So not an extensive schedule- just a short one to know what he needs to do to get those reinforcers.

* The fifth and final step is not going to be enforced right away- it's only going to be used if we find the other steps are not working. And this step is correction. If he poops in his underwear he is going to have to wash his underwear for three minutes- which doesn't seem long writing it here but it's long- believe me, we used this step at the very end of his regular potty training session. I don't make it fun for him- I don't talk to him, I just lead him to the sink, turn on the water, not cold, but not completely comfortably warm either. I hate typing this out- it sounds so mean- but it works. Brian just really needs those clear consequences to get over these humps. But hopefully as I said before we won't even need to get to this step!

Wish us luck- I think we're gonna need it!!

Thursday, June 4, 2009

Got Autism?


I was recently "dream shopping" (dream shopping: (v) the art of filling up carts online with no intention of buying it all because of not having an expendible income) on www.got-autism.com and had a whole cart full of items I'd like to get for Brian. I found the website to be really easy to navigate and they had a ton of items that I hadn't actually seen on other websites, not to mention the prices were very competitive. The variety of items were amazing from puzzles to intricate sensory swings. They have nutritional supplements, posters of trains, cars, & planes, DVDs, books, awareness items, and so much more! I left the website feeling a little sad I couldn't get anything that day but promised that next paycheck I would definitely buy a thing or two.

A week later I recieved an email from the owner of the site. She had noticed I had filled a "cart" and then left the website- being a fairly new site she just wanted to know if I had found the site helpful or not. I assured her that it wasn't the site, I enjoyed it very much, but I just didn't really have the money at that time to place the order. She wrote back and thanked me for the wonderful review and then continued to send me two tangle toys in the mail- one for Brian and one for Corbin- as well as a coupon for the site. I think it is wonderful to have found a site with such a personal touch and of course I have to rave about it and try to send others their way! So make sure to go visit www.got-autism.com !

Tuesday, June 2, 2009

A Real Look at My Day

So today was a typical day in my life and sometimes when I finish the day and look back I think, why the hell am I not officially insane yet?

*6:00- woke up, took a shower, dressed, hung new kitchen curtains, checked email, and watched some morning news
*7:00- waking the boys, help Brian get dressed- though he insists his pirate patch be the first article of clothing he put on, make them breakfast (Brian refuses cereal so he gets eggs just about every single morning), eat with them and talk about our schedules for the day, help Brian brush his teeth (thank goodness Corbin is pretty much independent in his getting ready for the day), pack Corbin's snack box, find his library books, greet Amber at the door and leave with Corbin
*8:05- deliver Corbin to school, stop and talk with his teacher for a few minutes
*8:17- Arrive at work, a little late as always, unlock the school, make copies of notices, set up circle, feed the fish, set up toys outside
*9:00- School begins- next three hours are filled with playing, learning, and some aggravation
*Noon- kids are leaving school- time to clean-up, set up for tomorrow, and do notes
*1:00- home, grab a quick snack, realize the realtor left me an email that she can meet me at 1- decide to run over there and see if she is at the apartment, hang out for a little while to realize she isn't coming
*1:15- back home, gonna relax for a minute
*1:30- big crash upstairs- go up to find that Brian decided to pull down three shelves that were full of all of his therapy stuff- Amber & I spend the next half-hour cleaning it all up and reorganizing
*1:50- Natasha shows up- wants to show me the newest wedding plans (yes, I haven't mentioned I'm in TWO weddings this summer so been busy with those as well as my regular life)- she got an awesome cake topper for the cake! We discuss wedding plans for a little while.
*2:45- Walk down to the bus stop to pick up Corbin
*3:00- ice cream for everyone (though I haven't ate lunch oops lol)- Brian really enjoys his sorbet once I let him put candy sprinkles on top
*3:20- some computer time- I'm addicted and don't feel well if I don't get some time in :)
*3:40- Smell something- yup Brian has BMd in his room and it's on the walls- give him a bath and help him get dressed again
*4:00- try to call around and make some plans regarding my sister's wedding- can't say anymore as she reads this blog ;)
*4:30- start making dinner- wanted to give the boys an early dinner because we're gonna go watch Josh's softball game across the street
*4:45- Phone rings- it's Chris saying the game isn't at the Elks field but at the Jailhouse- yeah, a jail team is in the league- weird, decide I dno't feel comfortable bringing the boys there so he'll have to go on his own tonight
*4:50- Suddenly hits me that I forgot Brian's OT- I don't know how! I have never ever forgotten one of his therapy sessions- Call Marissa & apologize!
*5:15- dinner is ready, boys both eat a lot which is good
*5:40- Corbin gets a 1/2 hour of video game time- which Brian loves to watch- I again go on the computer but only for a short while because soon Corbin wants me to join with him to help him get past part of the Lego Indiana Jones game
*6:20- Corbin goes outside to play with our neighbor and Brian and I finish cleaning up his room- after we do some letter work, jumping on the bed and pointing to the letters I've taped next to his bed
*7:00- I come downstairs to sweep, dishes, and clean the table- go back upstairs to find that Brian has again pooped and it's made it's way to the hallway this time- another bath for Brian
*7:25- Call Corbin in, get them both ready for bed, read them If You Give A Moose A Muffin, and kiss them goodnight
*7:50- throw in a load of laundry, start boiling water for some tortellini for myself, and hoping to stay awake long enough to watch Milk, which I rented several days ago but just haven't had the time to watch

The Never-Ending Potty Saga




**Warning- for those who don't have young children or children with special needs- you may find some of this really gross and maybe just too much information.**

Two weekends ago we spent most of our day at our family's cabin. As soon as we arrived Brian said, "poop". Our cabin doesn't have running water, it has an outhouse. He got one look of the outhouse and turned around. He said it again about an hour and a half later and we tried again, same result. I'd say about four hours later I find him squatting in his clothes with his little face all screwed up in the telltale signs of he's trying to have a bowel movement. I decided to throw him in the van and drive to my parent's house which isn't too far away. He RUNS into their bathroom, gets naked, sits on the potty, and then says "All done" without doing anything. I try to make him stay and he just screams and cries at me. So we return to the cabin with still no results and tell Corbin we are going to need to make it an early night because we need to get home so Brian can have some peace in his stomach- because by now he's extremely grumpy, which isn't a surprise- he can't feel well.

We drove home, the entire fifteen-twenty minutes he stayed awake but did not have an accident- which made me extremely happy- and he did finally go to the toilet when we got home. It was such a relief for me and for him.

Brian's been having major potty problems at home. He has so many issues around having a bowel movement. Going number one as well as even bed-wetting has been going wonderfully. BMs are a totally different story. He refuses to sit on the toilet seat- we've bought different seats to see if others are more comfy but none of them seem to matter. He can't seem to stop touching "back there" to check if the movement is coming out or not. Hence, yucky fingers that then get wiped on whatever's closest- usually the bathroom sink. He can't have a BM without getting completely naked and he is so upset with me when I try to make him at least keep his shirt on. He hates the feeling of toilet paper so we've started buying flushable wipes which do seem to help a little. He realized that this potty time was his biggest stress and the only time he REALLY gets mad at me.

So he came up with a solution.

He now waits until he is alone, safe, playing in his bedroom. Does his business in his underwear, fishes it out with his hands, puts it in the toilet, then wipes his hands clean on whatever he can- this week it's mostly been his bedroom walls. Usually he doesn't get through all steps without being caught but he sometimes does. It's disgusting- I don't know how much longer I can really handle cleaning up my five-year-old's poop- but I guess I will until I don't have to anymore. Not only can I not deal with it but when he gets caught he knows he's doing wrong and he gets VERY upset, even if I don't say anything to him about it. Crying, hitting his face, stomping his feet. I feel bad for him because I feel that he's trying to do it the right way but just needing to avoid all those sensory issues that he can't deal with. Finally broke down and called our ABA worker's over-seer to see if he has any ideas- though it'll be interesting to see how they help us implement it as he will hold it all day until the minute he's free of his therapists. He only does it when we're at home and it's only family around. He's been known to hold it from 8 in the morning (when he sits down to go but then Amber walks in so he changes his mind) until four in the afternoon- when all of his therapies are finally done. I don't know how he does it- I certainly don't have that kind of control over my body.

Monday, June 1, 2009

Eternity begins and ends with the ocean's tides.

I always dream of moving, making new adventures for my children and I, exploring new areas of this world- but I know in my heart I could never, ever, live too far from the ocean. I have always gone to the ocean when I need to think or reflect. I could not imagine not being able to just go sit by the water and smell the salt in the air when I need to.

Some recent pics from my visit to the Rockland Breakwater...






Since I was a kid I've always looked on the beach for "wishing rocks"- a rock that has a white line all around it- making a circle. I found this rock with a big THICK white band- I'm thinking I can make lots of wishes with it.


While following the path back to the car I spotted this little chipmunk- he was actually sitting just inches from my foot until I took my camera out then he scurried to this nearby rock- but still sat there for quite a while, didn't seem too scared of me.