Thursday, February 28, 2008
Friday, February 22, 2008
Thursday, February 21, 2008
We settled in all of our stuff: the infamous igloo with all of his food and refrigerated supplements, toaster oven and all of the other "must haves" for all the "just in case" scenarios. Ordered a fridge and microwave as well because we don't have enough crap already. Headed to Downtown Disney after what seemed like forever in putting stuff away, organizing our son's stuff, making his food in a space of about 3" x 24". DD was right down the street so made it there quickly and as we got out of the car it starts to drizzle and never stopped. Walked to Wolfgang's which was really good as usual. Had reservations and sat right away. They never dissappoint. He ate his food which we had heated at the hotel and then got out his dvd player which he became increasingly attached to as the vacay went on. The more people around, the more he used it to tune everything out. After that he rode the train and rode the carousel again. We walked some, went to the toy store and headed back to the hotel by about 10pm. During all of this night my mother had just so many opinions to share over everything and orders "put the sweater on him" " watch his hand" " don't do this, don't do that""it's raining" " he is getting wet" blah blah blah. I secretly hoped it would be the last of it...but it was not even the first of it.
Friday: Woke up at about 8:30ish, did the morning stuff. Had coffee at the hotel which was awful. Had to fill up the igloo with ice because the fridge was not cold enough for all his stuff so that sucked. Hubby bickering with my mom all morning over the darn ice and what the best way to put away his food was. Me bickering with her to stop telling me what to do , how to dress my child and how to f'in feed him. At least my sweetie was asking " castle?" which means that our constant repeating of where we were going must have somehow sunk in finally. Left at 10am to MK. It was ugly outside , drizzling and with 90% humidity...yippie so much for all the winter stuff I packed since the weather channel said it would be nice and in the 40's. But I digress.... Park, tram and as we wait for the monorail he wants "potty" ,lol, we ask him to hold it. Poor thing, with the weather how it was it was probably a hard thing to do. Hubby rushed to the potty with him once in the park and I went to civic hall to renew our Guest Assistance Card. Can I hear an angel singing AAAAAAAA? YES! Without this card we would NOT be able to visit MK at all! I took my old one and without any questions, they renewed it. Yeh! I am serious when I say this is the single most important thing for this trip. I would have left back home had they not issued it! Walked out, showed him the castle and his face was just in awe, that is, until he forgot about it minutes later. Sigh. We went to the tea cups for the 1st time. After the pooh ride we won Year of a Million Dreams extra hour in the park on a non-extended hours day. BUT, we gave them to some random family because our plans for that night were not to this park :( oh well. With our guest assistance card, we were able to use the handicapped entrance, be in a separate waiting area that would not be so crowded or be allowed in first to make sure there was no breakdown for all rides. At most, we waited 5 minutes or so. The park was insanely packed though. I will NEVER again go during a long weekend for sure. No way! Headed to Dumbo. Right as they sit us in and it elevates it starts pouring! Why not? bring it on. Whatever. We got soaked. I was really trying to be positive here.Went to the carousel which he loved and finally to the Small World ride. He was now in heaven for sure. When we came out, we could not find the stroller. It was about 15 minutes but with our son it felt like an hour. He is screaming for his "Wagon" and the idiot cast member who moved it could not find it. Finally find the damn thing as our munchkin is now in full tears. We head to lunch at the Liberty place. While we wait, we see The Rock!!! I forbid hubby from going up to him since he was with his entire clan, about 12 family members. I did not want pandemonium for this guy. Lunch was yummy! went back to It's a Small World and then watched the 3pm parade. He loved the last float with all the main characters.This was the first parade that he has actually LOOKED at in the 5 times or so that we have been to MK since he was born. He usually cries or buries his face in the stroller. He walked up to the castle afterwards and with a very worried face asked " Mickey Mouse?"...it was so cute!In his mind, this is where Mickey lives, in the castle.
½ an hour later, there was poop! The stimming remained though which was so difficult to watch and take. It can break anyone down watching your child act like a complete lunatic! Finally, I lost it. I didn’t scream like I usually do. I just cried. So frustrated. I fed him while crying and warned them both to stay the hell away from me and leave my son and I alone. After that moment of drama for me we packed and went back to Disney though that had not been the plan but we could not stay holed up in the room. Now, it was 80 degrees and muggy and we were wearing the 60 degrees clothing. Our parking spot was in HAPPY 79. Just perfect!Happy? God sure is funny. These Orlando forecasters have it all wrong. Went to Fantasyland and rode teacup and Dumbo where, guess what? IT STARTED TO RAIN AGAIN! Unbelievable. This time we had no hoodies on, so we were officially soaked. Did more of the same rides from the day before and ended with It’s a Small world again and he still loved it! Finished and waited 30 minutes for the castle show to start. In those 30 minutes my mother was crying, saying how this life was a punishment for her (personal drama I won't get into here), that I am so inconsiderate, that she is NOT opinionated (huh?). I ignored her and sat with my baby boy while we waited. I was hearing her complain to hubby but I was spent, no more blow ups for me. He told her off and told her that she needs to find her place and let me be the mom whether she agrees with my tactics or not. This went on the entire time. It took every inch of me to not throw her into the Disney pond. The show started and he was super happy and dancing. That is, until the witch part came out. He started crying, wanting to leave and refusing to look at the show, with his eyes shut closed. So frustrating. To add insult to injury, like I posted before, the cast kept chanting "dreams can come true" over and over which got me to choke back my anger and tears that this was such a messed up weekend with so many ups and downs. Finished the show and did one more ride before deciding to beg the lady at the Mainstreet restaurant to move up our 7:40pm dinner reservations to 5pm. She complied, yeh! I had to pull out the "my son has autism" card so that she would understand my urgency but whatever works at this point. Sat by 5:30pm and had a quiet dinner with a perfect view to the castle. It was a brief moment of heaven. We even saw some fireworks from the castle show while dining. That was a happy couple of minutes. I was just drained. Trying to stay positive and taking my trip in but with all the bickering and my mother’s voice it was so hard.
When done hubby wanted to leave back to the hotel. I stupidly insisted we stayed, again, trying to be positive. I wanted my son to see the Spectro parade with all the lights. We walk and find a perfect spot to wait for it and it starts pouring. Not raining, pouring, lightning and all. After waiting 20 minutes hopeful it would somehow stop, they announce the parade has been cancelled. Pure human hysteria. Imagine every single person in the park attempting to exit at the same time! Had we been single we would have dashed to the deserted rides. My son is freaking out because his legs are soaked and we attempt to pull out ponchos and umbrellas while running to the monorail. He hated my bright yellow poncho and my convincing him that mommy wanted to be Big Bird was not working. It was a human herd. We made it unto a monorail and follow the massive lines for the parking trams. They only had about 5 working! It was about a full hour before we got on one. One hour of my son having a “I am wet, tired, no nap, annoyed, sleepy, get me the hell out of here” meltdown. His shreeks were so loud that I know everyone around us wanted to kill us. We got those "looks" .We finally got on our tram and made it to the car and finally, the hotel. Insert BIG breath here. Took turns showering and we all hit the bed and passed out. No energy to even fight anymore.
Sunday: Of course, wake up to a gorgeous morning in the 40’s, beautiful blue skies and sunny. Hubby in a great mood because we are going home. I wanted to take advantage and do another park (yeh positive me)but I had it with him wanting to not be here and my mom so I bitterly agreed to leave. We still have 2 more days on our pass so I hope to use them in the summer either alone with my son or with hubby too. Home by 1pm and that was that.
Tuesday, February 19, 2008
Not too chipper but not too somber either.
Here are some updates in our crazy world:
-Had a high school reunion. That was fun but of course odd with all the questions " oh your son is 5, he must love sports or this and that huh?" I just went along with it and said he was more of an artsy kind. Which he is! everyone loved his pictures too.
- He had several rough days where his behavior was unpredictable and lots of crying fits..
- Has started with the shoving us and pulling our hair but does it all with a sweet smile because to him, it's playing. It's not in an aggressive manner. It's more of a curious cause and effect game. If you happen to react too much to it, he will do it more. The key is to somehow let him know it's not ok but in a casual way. Got that ? lol
- Continued with the nose and throat stim
- Endured a grueling blood work session. We took him to our DAN to get blood work for some tests:
IgG allergy testing
He knew the minute we walked into that little room. We used a papoose right away and he was petrified. He kept screaming "excuse me please" which is his phrase to be allowed to leave the room. I tried not to break down but finally did. The first vein they tried gave them some blood but popped. They had to try his hand instead. He was screaming so loud I could not hold the tears back. I held his hand the entire time and just said " it's ok, a little longer, mommy is here". Sigh. Of course, the minute we were done he was fine and dandy.
- On a good note, he has been saying some random phrases that I initially thought we were just not hearing right but maybe not. Such as : " it's gonna be ok" "not again", the jury is still out on whether they are random or not.
- The other day we were trying to get him too look at the Grammy's during the Beatles Cirque du Soleil performance which he typically would have liked. He could not stay still for 2 seconds to even look. I finally lost it and was so upset. Not just at that but the combination of how I had been feeling this month. He requested to go "potty" so I took him. I was trying not to let him see me cry but he did. He lifted my chin with his little hand bent down to get a good look at my face. He saw my tears and said "fix it!" lol that's his phrase to well, fix his toys, fix his nails and of course, he wanted mommy to "fix" the tears....such a sweetie! guess what, that made me cry more! lol I am such a cry baby this month. Geez. We then went back to bed (we co-sleep) and in the dark he would reach out to "check up"on my tears. He would touch my eyes to see if they were still wet..... awwwww!
- But the very very latest is that he got thrown out of his music program! yup!Anyone that knows him knows he is the sweetest child. Like I mentioned above, even when he is shoving he completely thinks he is playing and does not grasp that people can get hurt. Anyway, it was his 4th session. The first 2 were great, the 3rd one last week was a little shaky. He was doing his now increased nose/throat stim and completely overwhelmed the so called therapist who could not discipline him. She appeared to be flustered and not able to concentrate enough to get a grip on her big class of 4 STUDENTS! So, this past Saturday he was doing the same stim and as an added bonus was apparently shoving and throwing the guitars. Well, while he might have done those things, he CAN be disciplined which she did not do. (My husband and other parents were outside and did not at any point hear her discipline him or even tell him to stop). She just abruptly walked him out of the class by his dangling arm and tossed him to my husband and said " We will speak after class" and walked back inside. My 37 year old husband could not believe this woman! he also refused to be told to stay after school like if he was in 7th grade and left. She later called and said she was afraid for her "well being" LOL! (my barely 40 pound skinny boy) and that he could not be in a group setting. Never mind that she never even asked to work it out with my husband as to a different approach or even having my husband be present in the classroom. Never mind that my son attends regular public school and has never in his 5.5 years had this kind of problem with a teacher. We complained to the supervisors and got a refund or private one on one offered but we just do not think this woman is the right therapist for him. It's not like he was in an exclusive art school, this is a center for kids with autism. My child is not even severe! what would she do in a severe kind of setting? urgh!
- In any case, he has been much calmer the last 4 days or so and much more verbal. We are wondering if it's the added use of the AUTHIA cream we are using daily. Like with everything, it's just a guessing game. We simply do not know.
-Not sure if I mentioned this already but we also got rid of all aluminum foil for his cooking and no more microwave use either. We heat everything in the toaster over or stove top the old school way. I was reading about it on this book called "Dylan's Story" (which was a good read btw). I learned a lot and plan on putting some of those theories to good use. Mys husband and I have also stopped wearing perfume inside the house. We take it with us and spray it outside. Here's hoping every little bit helps.
-We have stopped chelating until we get the test results back which is also checking on his kidney function status. I want to make sure he is ok before we continue with the DMSA
That's it for us now.
In the words of my fave Scarlett O'Hara
" After all ... tomorrow is another day."