Disney Cupid Shuffle...

We survived Disney again!

Phew! Did not think we would but we did! Of course, now I don't think I want to go back for a while. The thing is, it was exhausting to go with both kids. Quinn is too small to truly enjoy it and having him in the stroller just slowed us all down.

Kai loved it of course. He visited his usual faves: Small world, carousel, teacups and the character meet and greets. We also stayed at the Nickelodeon Suites (do not recommend), and he met the characters there as well.

I was reading over my last Disney blog posts, and we have sure come a long way! Kai is just such a different child now. So much more aware and mature within his autism. Meaning, he is nine but acts like a four-year-old instead of a two-year-old. I can say we are now seasoned Disney parents. I have also become inspired to write a Disney 101 for parents of kids with autism so look out for that sometime in the near future. (I would say soon, but with my record, that could be December!)

The thing I will remember most about this trip though has nothing to do with Disney. 

While getting ready for dinner one night, I heard someone in the other room singing "to the right, to the right, to the right, to the right." I stopped what I was doing and run into the other room. When I asked the other adults about it, they shrugged their shoulders and said they thought "it was perhaps the tv." I insisted that it sounded like Kai. I pulled Kai over and asked him to do "to the right, to the right." He looks up at me, smiles and starts singing and dancing! If you don't know because you have been living under a rock, go to YouTube and search CUPID SHUFFLE. Yes, that is what he was doing! Who taught him that? Where did he pick it up? I instantly remembered that he had been working on a secret project for the end of the school year show. I e-mailed the teacher about it, and sure enough, she confirmed they had been working on it for a while.

That same night, hours later, as we got back from dinner, just as we are literally stepping out of the car we heard the cupid shuffle playing loudly by the hotel pool. I rushed Kai over, and he stood there frozen with a huge smile on his face. He could not believe his eyes. There happened to be a Girl Scout party at the hotel pool with a DJ, and about 80 little girls were doing the cupid shuffle right in front of us. We could not enter because it was a private event, but we had a front and center view from the corridor. We started dancing along with them as we both smiled ear to ear. What a great moment! Completely random, but oh so fun! His eye gaze kept shifting from them to me as he danced.

A couple of days ago we attended the actual end of the school year show where he did a great job on the stage performing it for everyone. It was amazing to finally see him participate in something most kids have been doing since Kindergarten! He is now in 3rd grade. Most enjoyable of all was to see him beaming and doing it without assistance.

So there you have it. Something always comes from these trips I love to love and love to hate. We always have a lot of firsts while in Orlando and not sure why that is. The magic of  Disney? Who knows. I do know I will remember that moment forever.

Disney bound...here we go again..

Not sure what I was thinking...

A big group of our friends is driving up to Orlando to celebrate one of the girl's birthdays. 27 of us to be exact: 14 adults, 13 kids.We waited until the last minute to make the decision. We figured we would "try." Worst case scenario, we can hide in our rooms and give the kids free range of the I-series: iPad, iPhones, iPod and I-DONTCARE!

I rearranged our schedules today so that my husband would pick up Kai and so Quinn's therapies would dwindle from 3 to just 1.

Of course, I should not be blogging. I should be packing. Procrastinating the inevitable, I guess. Just the thought of the amount of packing we have to do makes me nauseous. Traveling with an almost 9-year-old on the spectrum, a 2-year-old with developmental delays, a Disney hating husband and an SUV packed with every single thing you can imagine is just NOT easy.

For starters, both kids are on a mostly organic,  gluten, soy, peanut and casein FREE diet. This means we take everything AND the kitchen sink. OK, not really but almost. Yes, there are things you can now get at most resorts for them to eat, but you still need most of the stuff because of the "what if" factor. What if they don't have it or you can't dine at the time they have? The kids can't wait or starve because we all know that equals: tantrums! Shoot, I have a tantrum too if I can't eat. Of course, I am a mom. I am entitled to one too right? And mostly because it's my job to pack all of this stuff. But I digress....Luckily, the hotel we are staying at has a full kitchen. Phew! I hate having to take the toaster oven each time in the past. What a pain. This time I can leave the pots, plates, etc. behind! I still need to take a GFCF loaf of bread, their hummus spread, pasta noodles, tomato sauce, goat milk, bananas, cereals, chicken nuggets, waffles, crackers, tater tots, pizzas, applesauce, baby food, baby bottle, ice packs, cooler, lunchboxes, etc. and that's off the top of my head. It also means I have to not only prepare breakfast in the morning, but precook and pack what the kids will be having for lunch each day to take with me in the morning. Nothing spontaneous here like a hot dog or cotton candy! Oh no! Not us.

Traveling with the baby who is only crawling right now means taking a bag of toys to spread out through the room. The hotel says the crib "is not guaranteed" and "we can only request one upon checking in." This means we have no choice but to take the portable crib with the corresponding mattress, sheets and the baby's mobile. Phew. Then there is the topic of CLOTHES. I will spare you my story on how much I like to take on trips. Really. It's better not to tell you about it. Let's just focus on the baby wearing 4 outfits a day. Oh yes, at least 4. There is the morning outfit, the nap pajamas, then the afternoon outfit and the night pajamas (thicker). It's only 4 if he didn't poop, pee, drool or dirty one of them during one of those meals I so lovingly prepare at 7:30am. In which case, backup outfit # 5 appears. Yes, I do not like toting around a dirty toddler. Which leads me to BIBS! When traveling with a teething baby, you are guaranteed soaked bibs or shirts. We established I don't do dirty babies, so I have to carry at least 5-6 per day and a bunch of the disposable ones for meals.

Then let's talk about my monkey. We have to make sure the chargers are packed, the Nintendo and charger, the Leapster and charger and the DVDs for the car. It's that or "charge it!" said by him at least 30 times in a minute until it's charged. Good times.

Last fall we made a similar trip with the same group of friends, and we vowed never to do it again. They all sat around, drank piña coladas and beer, read books as they watched their kids splash in the water and called out orders and scoldings from their chairs. My husband and I had one kid each. My husband shadowed the ASD one, and I watched the then 15-month-old who refused to peacefully nap under the umbrella and sheet we had prepared for him. How do normal people do it? Wow. I cannot imagine not having to worry about meals because you can just walk into a restaurant and eat or wait for a table to be ready to do so. Only having to pack your clothes. Nice. Walking around without having to be physically prompting the kids and actually having your personal space at all times. Speechless. Heaven.

Personal space? what's that?

So why do it? Why put ourselves through the misery? I don't know. I know I space out vacations enough to forget about the bad experiences and just reminisce looking at the old photos of the beautiful ones. Perhaps that shimmer of hope that maybe this time, it will be different. This time it will be worth it.

I know the last couple of times Kai has done amazing at the park (Magic Kingdom). We have been able to diminish the negative autism behaviors down to the bare minimum. It will be the baby's first real trip since he slept through the last one at eight months. We will also try to visit Universal. Our hotel, the Nickelodeon Suites, has an extensive pool and water slide area that will be our refuge the next four days.

For old times sake, these are the links to my last two blog posts on Disney trips:

http://asdqueenbee.blogspot.com/2008/07/big-disney-news-and-more-updates-on-us.html

http://asdqueenbee.blogspot.com/2008/02/not-so-magical-disney-trip.html




Not sure what's in store for us but, I need to end this post so that I can go pack.

Will check back once we return.

May the Disney pixie dust be with us!

Tootles!

Big Disney news and more updates on us!

Where has this summer gone? Wow.
He starts school in four weeks. What is that? CRAZY I say.

So much has been going on that I don't even know where to start. I think I will have to just post the reader's digest version. I don't think I will have time to get into all of the details.

- Improvements in articulation
- Mastering 8 to 12 piece puzzles patiently
- Copying block patterns on the table versus on top of the display
- Happy, patient and very calm
- Still stimming covering the ears, minimum humming, and fingers in the mouth. I guess his teeth are bothering him and about to fall out? Not sure.
- Can now use yes and no appropriately though it has to be to topics he knows. I can ask "Do you like the Red Sox?" and he will proudly say YES (even though he knows nothing about baseball). Therefore, I know he still doesn't comprehend it all, but we are getting much closer now. I especially enjoy it when I say "It's sleepy time!" and he replies "no thank you." ha ha ha ha
- Continues to use kisses, hugs and "I sorry" to get us to forgive him or get what he wants. Hard to cover up the smiles on our faces when we are trying to be firm and act mad. But it's so incredibly cute!
- Cried the other day when a boy that was here at home playing with him left. He was very upset. He has never cared whether anyone other than mommy and daddy left the house. He was having such a good time interacting with the other boy. We could not believe it.
- He knows my name and daddy's name too!

ON TO THE BIG NEWS!
We just returned from Disney. Yes, I said it. Disney.

Those who read my blog KNOW all about my last Disney experience. 

If you want to catch up read and relive my pain, it's here: http://asdqueenbee.blogspot.com/2008/02/not-so-magical-disney-trip.html

Well, my friends, it happened. The magic of Disney finally happened for us. Maybe it was more the magic of "parents spending too much money on helping a child through therapy, biomedical and pure will" but I will go with the flow here and pretend it was the Disney magic.
The number one change this time? Grandma did not go with us. Sounds mean but boy did it make a difference. Imagine! I was able to call the shots on my own child! What a concept!

I did not make any morning character breakfast reservations this time. We got up and spent hours in the hotel room having breakfast and fixing his lunch and dinners to be with us at all times. This takes forever, especially if you add the supplement concoctions that involve measuring and dividing 18 supplements into healthy fruit smoothies for him to eat after his meals. Phew! What a pain in the you know what!

I took a single burner and toaster oven to make sure all of his food was cooked and stored in stainless steel without a microwave.

We charged his DVD player and had reservations for lunch and dinner at different parks. 

We left the hotel at our leisure. No hurry, just playing it by ear. Other than the meals, we paced everything slowly.

Well, he had a blast!

Here are the highlights:

- As we strolled by "It's a small world," he jumped out of his stroller, looked at us, said "YEEEEES!" and ran to the entrance. We ended up seeing this attraction five times. Luckily not all back to back. Wow! He was so happy, clapping and engaged.

- He rode Dumbo, the teacups, flying carpets, carousel, the train, Pooh, and even met the characters under the big tent! We used the GAC for everything, and it was such a blessing as usual. He loved the parades too!

- We had lunch at the Liberty Tree Tavern near an outlet (for his DVD player). We love it there. While at lunch he said twice "I so happy!" WOW!

- He pointed more this past weekend then he has HIS ENTIRE LIFE. No joke! while at Downtown Disney he wanted to go back to the Lego store and he tugged my hand while pointing to it and said: "LOOK!". Huh? A child with autism pointing? No way! Well, yes way!

- Dinner was at the Plaza Restaurant where we were introduced to the allergy menu. Did you all know about this? A BINDER with all of the ingredients in everything they carry and items not on their list. He tried the Tapioca Buns and had them down before I even took four bites of my meal!

- While we were leaving, we caught a fireworks display which just topped off the night for him. He covered his ears and rightfully so (it was like bombs!), but he had the biggest smile on his face and kept urging at me "Mommy! Fireworks 1,2,3, go!" whenever there was a break in between. Too bad I was not on the control board. :)

- Not ONE tantrum during the Magic Kingdom trip!

- We also went to Epcot, Animal Kingdom, and Sea World. Yup! He rode all shuttles patiently, waited to get on rides and just listened to me like he never has before!

- The aquarium and Nemo ride at Epcot was his favorite. He is still asking for Nemo now. Unfortunately, he now has a Nemo obsession again and has not stopped watching the movie. The plus side of it is that he is actually watching the entire movie which he never did before.

- We also caught the Illuminations fireworks show at Epcot which was just heaven for him.

- Sea World was also very nice. He loved when Shamu jumped and splashed everyone!

- I cannot wait to go back and see if this was real or just a fluke.

- He has grown so much this summer already. The ABA and new supplements seem to be doing a lot of good. It's the first time in a very long time that I am witnessing progress. I feel like he understands a lot of what I am saying. I was able to talk to him about animals and give him lots of information while in Orlando. He gave me amazing eye contact and was so patient the entire time.

- Only time will tell if this will continue but we are finally feeling good about his treatment.

Things coming up for us:

- We decided to continue the ABA afterschool for 10 hours a week once school returns.

It's never-ending, but at least there is a lot of significant progress now that helps us keep going and keep our focus!

The not so magical Disney trip

Our January Disney World Trip

Thursday: My husband, my mother, my son, and I left at around 2:00pm. My son fell asleep right on time as we drove north. Two and a half hours into the trip, we had to make a potty stop. The hubby came around to get our son just as I mistakenly locked the car doors. Silly me, I thought the hubby had everything with him. After all, how could he possibly come get our son, go back to get his wallet and the keys with him in tow. That's what he did and I locked us out. I took him to the potty and I then remembered we had Onstar. The hubby had already figured it out and was calling them. Just like the commercial, the door was unlocked in under 2 minutes. CLICK! Amazing! Way to save the day OnStar! I was ecstatic. We arrived at the hotel just a half hour later. Three hours of trip time. Not too bad. The weather was hideous in Orlando. I should have known then it would be a "stormy" weekend (in every sense of the word).

We settled in with all of our stuff: the infamous cooler we always carry with all of his food and refrigerated supplements, a toaster oven, and all of the other must-haves for all the just- in-case scenarios. We ordered a fridge and microwave as well. Because, you know, we don't have enough crap with us already. We all headed to Downtown Disney, after what seemed like forever in the room organizing our son's stuff, making his food (in a space of about 3" x 24"). Downtown Disney was right down the street and we made it there quickly. As we got out of the car, it started to drizzle and it never stopped. We walked to Wolfgang's and sat right away since we had reservations. Dinner was really good, as usual. My son ate his food. We had heated his food at the hotel. Afterward, we got out his DVD player as a reward. He seemed to become increasingly attached to the player as the vacation went on. The more people around, the more he used it to tune everything out. Once we finished dinner, he rode the train and the carousel. We walked around some, went to the toy store, and headed back to the hotel at about 10pm. All night long, my mother had a whole lot of opinions to share on just about everything we did or didn't do. "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: We all woke up at about 8:30ish and did the usual morning stuff. We had awful coffee at the hotel. We also had to fill up the cooler with ice. The fridge was not cold enough for all his stuff, that sucked. The hubby was bickering with my mom all morning over the darn ice and what the best way was to put store his food. Oh joy! I was 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 monkey kept asking to go see the "castle." After repeating it for him constantly, he was apparently finally understanding where we were and where we were about to go. We left at 10am to Magic Kingdom. It was really ugly outside. The drizzling and 90% humidity was daunting. So much for all the winter stuff I packed. The weather channel anchor had mistakenly said it would be nice and in the 40s. Not so! We parked and took the tram. As we waited for the monorail, Kai announces he wants the "potty." I had no choice but to ask him to please hold it. Poor thing, it was probably extremely hard for him to do it. The hubby rushed to the potty with him, once in the park. Meanwhile, I went to Civic Hall to renew our Guest Assistance Card. This is the part where I heard the angels singing. Without this card, we would NOT be able to visit the Magic Kingdom at all! I always take my old one. This make the renewal process much easier. I am serious when I say this is the single most important thing we need during 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 first 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 and 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 sat us in and it elevated it started 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 screamed repeatedly for his "wagon" and the cast member who moved it could not find it. Finally found the damn thing as our munchkin was now in full tears. We headed to lunch at the Liberty place. While we wait, we saw The Rock!!! I forbid the hubby from going up to him since he was with about 12 family members. I did not want pandemonium for this guy. Lunch was yummy! I 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 afterward and with a very worried face asked " Mickey Mouse?" It was so cute! In his mind, this is where Mickey lives.

Did some shopping and left by 4pm. Again, bickering between hubby and my mom, my mom and I, non-stop. For every decision or comment I would make, she countered with a differing opinion and it was pissing hubby off! It's hard to take in all the nice things when all of this is the backdrop. Back to hotel and took forever to get the mouseketeer to nap. We showered and left to the Contemporary for Chef Mickey's dinner with the characters. Shopped a bit, watched the fireworks from the lobby and then back to the restaurant to sit. Almost immediately the characters started to come by. No time to eat. He did not like Goofy at all! My mom, of course, wanted him to eat at that precise moment. "Who cares if the characters are here, I want to feed him." "Really? Is this what we are doing here at Chef Mickey's? Feeding him? Silly me thought it was for him to meet the Disney characters! Go figure" Stupid. My son in the mean time was too overwhelmed and hid behind the DVD player. Taking it away resulted in a floor tantrum which made every one around us miserable. It was a lose/lose situation. I think even Mickey was annoyed. But, hey, we continued to take pictures with the characters and make it the best we could. Goofy? Nope. Donald? Nope. Mickey? Nope. He would not pose, so we did instead. He did like Minnie mouse a lot. The food was pretty average. This was the worst character dinner ever. Not because of my son's lack of interest or my mother being a PITA but because they just walk around, no show or anything like that. I envied the happy families who sang songs at the dinner table, ate ice cream peacefully on Mainstreet and the kids who begged to buy stuff at the shops. It all seems so normal and so far from our relationships with our son and family circle. Anyway….

Back to the hotel, exhausted mainly trying not to blow up and ruin our vacation. I mean, my mother was on overdrive this trip. She usually has bad moments and then calms down but not this time. Had it been hubby and I alone, it would have been more intimate and a much smoother trip. To add to the fun our son had not pooped. Poop is important as well all know ! By not detoxifying, all the crap (pun completely intended) is inside of him and makes him act out. He also does more stimming and becomes very hyper. But wait, there was still Saturday to go, woohoo!!!

Saturday: Good morning to all! He woke up super irritable from the get go and no poop yet. More stimming, throwing himself full body against the bed and all that fun stuff. Left at 8am to MGM. Foggy morning and 60 degrees though the forecast was for 80s, rain and cold weather at night. Get to the Jojo character breakfast he had loved last summer. They sat us at the wrong table. Then they sat us in a table in a corner, which hubby did not want. Lastly, we get our third and final table. He ran over to June and is mesmerized, for a couple of hapy minutes only though. He wanted her for him and wants to dance with her which was great. After that, he wanted nothing to do with Jojo, Goliath and the others. Nothing. He even shoved poor Jojo and pulled Goliath’s tail (OK that part was funny)! So again, he hid behind the DVD, we adults took pictures with the characters, my mom gave her opinion of what we could have done differently and all her expert opinions and it was just such joy. Hubby sat pissed off because he does not want to be there. He wants to be home watching football. He paid for us to do this and he could care less about the characters this time around and he is about to kill my mother. I am in the middle of them both, trying to console my son and wanting to choke my mother as well. We left to the Playhouse Disney Show and IT”S F'IN CLOSED! You would think they would have told me that or I would have read that with all my Orlando message board research! Fabulous. I somehow find energy to try to make the best of our day and suggest the Little Mermaid show. We went in and minutes in he hates it and starts to scream (during the silent breaks) “WAGON! OUT! BYE BYE! ALL DONE! CAR!” We request to be let out of the auditorium and leave. He screamed all the way back to the car. Once in the car, it was like nothing had happened. The weather was getting crappier by the minute. Found a Walgreens and bought some glycerin suppositories to make him poop and head back to the hotel. All the way back, my mom continued to talk about why she thought he had not pooped, what we should have done, what he was thinking, and all the wonderful unsolicited comments. Hubby went under the covers to shut everyone out once back at the hotel. I put the suppository in and then wrote in my travel journal, my mother, you guessed it,  kept whining under her breath and we all waited for him to poop.

Half 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 cried, said this life was a punishment for her (personal drama I won't get into here), called me inconsiderate, denied being 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 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 when 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 over this messed up weekend. 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 all the bickering made it hard.

When done the 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 started pouring. Not raining, pouring, lightning and all. After waiting 20 minutes hopeful it would somehow stop, they announced the parade has been cancelled. Pure human hysteria. Imagine every single person at 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 attempted 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 followed the massive lines for the parking trams. Only 5 were 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 shrieks 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 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 40s, beautiful blue skies and sunny. Hubby in a great mood because we are going home. I wanted to take advantage and do another park (yeah 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.

Autism Sucks

I am sad and angry today.

I have been all week.

It's here again. The depression stage that I had successfully kicked to the curve last fall.

For the last couple of weeks, he has hit a plateau. In fact, now the stimming has increased. When stimming increases I am reminded more than ever about the A word: Autism. I find it is possible to forget about it a bit when the stimming is not there.

He has increased the nose snort thing he does along with the throat one he does. In addition, he has started to shove and throw things high into the air. Things like toys, shoes, balls, etc.....

Exactly one week ago we set out for Disney. Me, the big Disney fan, was actually stupidly hopeful it would be heavenly. While some good did come out of it, it was mainly a miserable experience. The good was OK, but the bad was baaaaaaaaaaaaad. While watching the "Dreams Can Come True" show in front of the castle, I almost left in full tears and with a nervous breakdown. My son wanted nothing to do with it and it was almost the end of the trip already. He insisted in shutting his eyes and not looking up as he covered his ears and hummed. My mom bickered with my husband and while all of this was happening the cast was making the audience chant "Dreams can come true, dreams can come true" over and over. I could not help but look up at the stage and wish they would all shut up and go away. As I watched the audience under the "magic of Disney" spell, I felt so stupid standing there while everyone chanted. Here I am looking at my son who wants nothing to do with the show and is stimming like crazy. What dream? Certainly not mine! My dream is far from coming true. This was more like a bad dream. I fixed my eyes on the top of the castle and tried to tune it all out and waited for the happy ending of the darn show. I could not walk out. We were in the middle, front section and impossible to leave out of it. I fought back the tears hard. But, enough about Disney, that's a whole other post. Just sharing why today I am feeling sad.

This post is about the rest of the week when we got back from Orlando.

On Monday we went to see our holistic doctor. We were escorted into the tiny room and the doctor came in a half hour later. While he reviewed where we last left off last August, my son stormed through the closet sized room which already contained 3 adults, a TV and some toys. Things were flying and stimming was high as he climbed the sofa and just created a lot of chaos. I was glad so that the doctor saw how he can be, but I was mortified that he was being this hyper. He really isn't really like this usually. 

After the 40 minute consult was over I felt like I had run a marathon. I was completely beat. $200.00 for the consult and about $300.00 in blood tests (to be done soon), and a urine toxic metals test (to be done soon). I wanted to run out! All that money and he was still so far from recovered.

I went home feeling very down.

That same night, well really the next morning at about 1:50am our son woke up crying hysterically. He can't explain what he was feeling, but in a sleepy, whiny, crying voice he was saying "ear!" and "mouth!". I thought that perhaps he was losing a tooth and it hurt. I also thought he might have an ear infection, though it has been years since the last one. This went on for what felt like forever, but it was really about an hour. I called the peds office completely anticipating it would not help. My husband in the mean time wanted me to give him Tylenol. I refused because of the reports on decreased glutathione linked with Tylenol. He then used this time to mock our "natural" approach to our son and said "well, what do we give him then". The sad answer was "I don't know."

The nurse on call, called back. She interrogated me forever and then said Motrin and cold compresses to the ear. My husband left to buy Motrin and I attempted the cold compress with no success. He fought me off. Sigh. Finally, my husband brought the Motrin back and with that, he went back to sleep in about 10 minutes.

I left him home from school the next day worried and took him to the doctor's office to get checked out. He barely complained . Just said "ear" a couple of times, but was in a good mood. Here is the story from the pediatrician's office.

I had a 10:30am appointment, I made sure and walked in at 10:30am to avoid the prolonged waiting. In the lobby as we waited, there was a little girl who was about 4 and her little 2 year old brother. They took an instant liking to my son, unfortunately. They kept asking him questions which he would, of course, ignore and stay silent doing his own thing. The little girl came up and asked "What is his name?" and "Does he talk?" I told her his name and said he spoke a little bit. The little boy started getting upset that he would not answer back. Finally, out of frustration he said "Hey! what's wrong with you punk head?" I swear he said this. A 2 year old. He then proceeded to follow my son around screaming "What's wrong with you?" Emotionally, I did not want to bring the autism card out to the kids mother and get into it. I just did not want to talk about it. I rather let her think whatever she wanted and leave it at that. I redirected my son as the little 2 year old boy kept harassing my 5 year old. The office is usually good about appointments. At 11:00am I finally walked inside uninvited and asked how much longer they would be. My son was starting to get really hyper, jumping off off things and, in addition, there was this situation with the little boy. They said that because I was a same day appointment it could be another 45 minutes. As usual, I failed to keep my cool and burst into tears. I hate when I do that. I told them to cancel my appointment, that I could not wait outside with my son. I stormed out. I then thought about it and walked back in. I told them that I was not being ungrateful or impatient, but that my son has autism and he could not stand to wait yet another 45 minutes. Luckily my son had to go potty and while I took him, my mom pleaded our case with them. By the time I came out, they called us in, put us ahead of everyone and the pediatrician saw our son. No ear infection, nothing wrong with him. He gave the ped a hard time while he examined him, but we were out in about 15 minutes.

I walked up to the reception desk and I thanked the girls. I told them that this meant a lot and that they have no idea how much it helped. Before I could continue to thank them, I turned and caught my son right when he shoved a little toddler down to the floor. I rushed over there, picked up the toddler and apologized to him and apologized to the mom. The mom gave me the death look and I made my son say "I'm sorry" to the toddler. But you know, it was more echolalia than anything. He had no idea that what he did was wrong. So, I took my son by the hand, said another thank you as I walked out with the toddler still screaming in the background.

I wanted to disappear.

I cried on my way home. Shocker. It had been 6 continuous days of this, of autism all the time, day and night! It's never going to stop is it? I mean, I am pretty resilient. Yes, I am a crier, but I get over things pretty quickly and move on. They are usually bad at the moment and then I can focus again. But this? This has been wearing me out completely. I might do another posting soon while happy and chipper, but not today. Today I am mad. I am angry.

The best part of this story comes from the reports from school yesterday and today of increased stimming, shoe throwing, and whining. Nice.

If I lived in a bubble, everything would be just fine. We have our routine, our son is usually happy and we live. But when put in the very real day to day situations and with other kids, things suck. I am tired of explaining my child's behavior and of pulling out the autism card. There is no price on the health of your child. There just isn't. I am living with an incredibly cute and happy child who is in his own world. I mean, even a blind or deaf child can have a conversation with you and tell you how they feel. That they are hungry or that, hey, I really like it when I wear that red shirt. It is sad when you are put into that situation of analyzing how much worse it could be or how someone else's misfortune might be better than yours, but it's reality.

I am pissed off at the world today. I don't understand kids suffering. Why? What good does it do? Is God trying to teach me some sort of lesson, because really I am not getting it and if anything, it's making me into an ugly version of myself. I don't feel like looking at "on the bright side" today.

I want to scream at the Disney show creators for making the audience chant "dreams can come true." B.S. well, I take that back, I guess they can for some people, just not for me. Why does my little boy have to go through this? Why do any kids have to go through anything remotely cruel?

This is me venting. Take it as it is: one really sad and angry mom.

So quiet...and the mouse

This past week has been pretty much QUIET.
I was so excited with each week of gains we had been having, but nothing this week.

Is this the plateau I was worried about?
I hope not.

We leave to Disney World on Thursday!
Let the packing begin!

He has been on the Disney website staring at the castle over and over.

He doesn't understand when I tell him that we are going to see Mickey and the castle.

He just gets excited when the fireworks shown on the website begin.

He also loves the Mickey Sing-a-long video, filmed at the park.

Since he's starting to understand the days of the week a little bit, I keep saying "Mickey on Friday." But, he just smiles, skips away and moves on to something else.

We visited last June.
He did pretty good and had a good time.
Fingers crossed for another good trip.

The hotel is lined up, refrigerator and microwave reserved for all of his special food and supplements. We are taking the toaster oven and a cooler with all his stuff.

I have my photocopy of his diagnosis as a back up as well as last summer's Guest Assistance Card, which was a blessing! Hopefully this will make it easier to get a new card without any hassle.

It is supposed to be in the 50s at night, brrrrrrrrrr, remember we are Florida residents. 50 is really cold for us. I just hope it does not rain. :(

We have booked 2 character breakfasts too!

Getting excited but as usual, nervous about all the what ifs.

Will post back soon.