An autism Halloween

I love October. It's one of those rare times in Florida that the air actually starts to change. The light breeze goes from 95 degrees to 80. Ok, it's not much, but I will take it. (a gentle reminder that South Floridians break out the parkas at the mere mention of the weather dropping to 75. True story)

Along with that breeze comes Halloween. Now while I love any excuse to shop and dress up, the reality is that for most kids with autism "love" is not a word they would use to go with the word "Halloween," (if they are even verbal that is).  Kai is nine but still does not get the full concept. I guess that he does perhaps know that once in a while mommy goes nuts and makes him wear weird clothing and nags over photographing him in it. I usually start mentioning it a week ahead of time. I show him his costume and even draw up a social story for him in the hope something clicks.

This year Kai (9) was Batman. Quinn (2) was Robin.  Kai has been a Hershey's Kiss, Superman, army soldier, clown, Incredibles, fireman, soccer player, and Peter Pan. Quinn is still too little to protest it. Most of those costumes listed have no hats or masks, and if even if they did, they were worn for a split second as I snapped a photo and were never to be seen again. He must think I am nuts. I mean, why can't he wear his tee and shorts like every day? Why can't he just be? What fun is it to wear weird itchy clothing? I guess I can see his point. My rule of thumb for holidays is this: as long as I get ONE photo, the rest can go awry, and I won't care. At least, I try to stick to that.

I got the one photo!

The other BIG issue? Candy. They do not eat candy and don't care for it. They have been on a gluten/casein/yeast/soy/peanut free diet for the longest time. Although some candy falls into those categories, we just don't give him any. It's annoying to me that our standards are so low for our kids' diets. By "our" I mean, society in general. Peek into any kids school on a holiday party, and you will find 3 puffed Cheetos, a cupcake, and a handful of chips on their plates accompanied by some juice. That's all they eat for lunch.  I wonder why they could not concentrate in class and were hyperactive? That's how they spend the day until they get home and "hopefully" eat a well-balanced meal. Insert eye roll here when I say "hopefully" because I would dare say, it mostly does not happen. Need to point out that this goes for all kids: autism or not. If it was only truly just on holidays, but it happens more often than not without the holiday excuse. Not saying that had Kai not had autism he would not eat that once in a while, but I would make sure it would be only following a nutritious lunch. Is that so hard to do? But I digress... 

As it turns out, this year Kai was successful in repeatedly donning his Batman for not one, not two but three  Halloween parties! That was huge. Did I mention the Batman costume has a mask? I even think it was the first time he understood that going to a "Halloween party" entailed "conditions" (costumes).  When his teacher sent a note home asking for "special" items to be sent to school on Halloween such as candy, pastries, chips, juice, etc. I sent a note back saying "no thanks," and that was the end of that dilemma. I still cannot comprehend how they want to feed sweets to a classroom of kids with autism whose behavior will most likely deteriorate immediately afterward. Kills me. 

Halloween night we briefly attempted to go to a friend's house. It was a little rowdy for our taste. Kai was all over the place. Quinn (who is not walking yet) was just crawling all over the place with his little hands picking up all the dirt from under people's shoes and then putting his hand in his mouth. Did I mention I am neurotic about limiting the baby's germ exposure? I swear I am pretty normal otherwise. Ha!

We hit a big wall when we attempted to trick or treat. Here is Kai, being prompted to trick or treat for something he does not understand (since he does not know or eat candy). Why do we even make him do it? So he can "fit in"? So that we have a sense of "normal"? After he attempted to enter a couple of strangers houses looking for what I can only guess is the location of their computer, I called it a night. Here were these poor people offering Kai candy and all he did was push through them and stretch his neck hoping to find a computer or something to play with. Oy! Never again. 

Next year I think we will have the boys dress at home and participate in giving the candy to the trick or treaters that come to our house instead. It's more fitting for our lifestyle. We don't do candy, but you do, and we want to celebrate with the world so here, take it all and enjoy! This way they will also get to interact without the confusion of asking for something they don't eat. Makes much more sense and I think I have finally made some peace with it. Bring on Halloween 2012.

And now time to tackle an autism Christmas. 

It never ends does it?

How was your Halloween?

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!

Ah, the joys of family vacations...

Three hours to pack! I admit, I'm a girly girl and did pack a zillion things, but the three hours of packing was not my stuff...it was mostly my son's!

I requested a microwave and fridge for the room. In addition, I took the toaster oven to make sure all of my son's food was prepared and ready to go as needed. I took his morning cereal and bowl, soy milk, plastic cutlery, disposable plates, ziploc bags, aluminum foil for the toaster oven, endless bags of his GFCF pretzels, cookies, fruit compotes, tapioca bread, peanut butter, tater tots, chicken nuggets, waffles and vegan cheese. Also his lunch box, thermos, sippy cup and a 24 pack of purified bottled water. Most importantly, all his supplements had to go on the trip as well. One big cooler full of ice for all the cold items went on vacay as well. My son's diet is limited to these items as of right now. It's all he will eat and it's all GFCF No, we were not moving in, I swear!

We timed the drive there so that he would nap in the car. It was really only a 1.5 hour drive and he only napped for the last half hour. Luckily, the lack of sleep did not really hurt him later. He jumped on the bed the minute we walked into the room and had a blast doing so. We don't mind either. He gets such a huge smile on his face!

We had to take a tram to reach the beach. This meant WAITING in line. He was a little antsy, but the tram came fairly fast with no chance to really have a meltdown. We spent the afternoon on the beach watching the sunset. Beautiful.


He insisted in going into the water and did so up to his waist! Of course, once he was over it, he wanted "all done with pants" (even though he was wearing shorts) and we could not take it off because my hubby had taken his diaper off and forgotten to put something else on him. (Have I mentioned he is not yet potty trained? He won't go while wearing clothes, which is good and an improvement from before, but not potty trained yet.)



He stayed in his wet shorts and we waited for the tram to take us back. This time, it took a good 15 minutes which in autism world means 30 minutes or more. He kept pulling our hands and saying "bye bye." We did explain what was going on, but he didn't understand. Have you ever spoken English to someone who does not speak the language? Yeah, that's how it goes except he also cannot comprehend or reason. How is that for fun?

Once again, right before a meltdown happened, the tram magically appeared and all was back to normal. Phew, dodged that bullet. Back to the room for family dinner. Decided to order in and relax this night.

The next morning we also had breakfast in and then headed to the pool. My son, who we lovingly nickname Nemo because of his love of swimming, wasted no time and went right into the pool with my husband. The pool was still not getting sun and still quite cold, but he did not care. My husband had the good idea to take him on the hotel slide with him. That spooked him and now he did not want to come near us in fear we would attempt to take him on again. It was fun spending an hour trying to rebuild the trust that, hey, we just might not be after him for that. Spent most of the day switching on and off with my husband going into the pool with him. In the back of my head I kept fearing any additional stimming and behavior that all of the excessive pool chlorine would cause. But tried hard to have a relaxing time in spite of constant reminders that we are just not that "normal" of a family.

For instance, it was not fun when my son playfully splashed water at a girl twice his size and shoved a little boy. In his world, this was his way to interact with them. He did it all with a proud smile on his face. Not one mean bone in his body. We ran to the rescue, had him apologize to the kids and showed him (attempted to anyway) the proper way to interact with them. Luckily, the kids were sweet and patiently sat back as he did all these things. He would repeatedly attempt to get near the slide landing to feel the water as it rippled, which of course is dangerous. My husband had to keep swimming in to fish him away from there. This was over and over, all afternoon. There was a piña colada for my husband and I somewhere in there. We still attempted to get some sun and get into the tropical vibe. Called it a day late in the afternoon and headed back to the room for baths. I put my son down for his nap and my husband escaped for a massage while I showered.

Once my husband got back, I prepared dinner for my son in the room and then we headed out for our dinner. Found a really cool restaurant which is Italian and sushi bar all at once! Walked in and panicked when we realized there was live music. My son loves to hum and hold his ears when this is the case. We figured we would try it anyway.The host said our son was "the cutest thing she had ever seen." I think so ;) Of course it helped he was wearing his "Sorry girls, I only date models" tee. They walked us to a perfect table: by a window, away from the main dining room and near a wall with a plug on it. This way my son could look out the window, be as loud as he wanted without disrupting anyone and we could plug in his DVD player without the fear that the battery would die. Yeah us. As usual, we delayed bringing out the DVD player as an exercise of patience for him. He sat without holding his ears! This was great. He alternated between sitting and bopping his head to the music and looking out the window. He did good and perhaps the longest he has gone without flipping out. Once the food arrived, we finally took out the DVD player and it was heaven. He was able to focus by having the DVD player there with him. Sort of like his crutch. To our surprise, he kept dancing in his seat. He did it even to Brown Eyed Girl. Woohoo! Had an amazing dinner overall complete with wine, dessert and coffee! Left back to the hotel where my son ran around the lobby having a jolly ol' time.

The next day we did our morning routine. We packed and headed downstairs to catch the  tram to the beach. We got our chairs and hung out most of the day. It was a beautiful day. We alternated between being in the water and out. My son was too tired at times and would sit and lounge on the chairs just like us. We could not interest him in his bucket and pail but we kept trying repeatedly. It was a picture perfect day all around until it was time to leave. We walked to pick up the tram back to the hotel and there were about 20 people in front of us. As is customary with some autistic children, routine is huge. My son was now used to walking, picking up the tram right away and leaving. Not today. There was a long, 
hot wait. After he realized we were just standing there, he started to throw his head back in full screams, tears and even some kicking. I attempted to kneel down to eye level and explain in brief that the "choo choo" was coming and that we had to "wait." The more I attempted to explain, the louder he screamed, so we let him. We stood there poker faced while he went insane. I refused to walk away and show him that by doing that he got to step out of the line. Of course, I am sure everyone in line hated us. To our surprise, the family in front of us with two kids around the same age as our son used our situation to explain to their kids that this is how "they" look when they tantrum. LOL Made us feel like we had someone who understood. And their kids were typical! It was finally out turn. Like an automatic switch, the minute he saw the tram he smiled and was an instant angel. Phew! Got back to the room, where we did had his bath routine and then naps for all.

My turn for the massage this time. Very well timed I should add. I ran there, well not really but I wanted to. I walked to the spa and had a deep tissue massage and a pedicure. Heaven! I did not want to leave. They pretty much threw me out because it was closing time. So long peace! I felt rejuvenated and ready for the rest of our trip.I walked back in and my husband had fed our son dinner. Wow! This was great! We changed and headed out for us to have dinner. I wish we could do joint meals, but it's too hard with our son's diet. We found an Outback Steakhouse and had another nice experience. Other than him standing up in our booth a bunch of times, it was nice. I am thinking the key is to go to loud restaurants. Seems to work out good for us. It's so sad when the waitresses always offer us kiddie sippy cups, crayons and coloring pages. We always take them and attempt to use them with our son, but he doesn't care for it yet and certainly does not drink out of a straw.

We went back to the hotel after dinner and off to bed shortly after packing for the next day. At about 4am our son decided to get up and sing and dance. I guess he didn't get the vacation memo...sigh.....he was having the time of his life too! He finally nodded back to sleep again and woke up at 9ish. Yes! We managed to sleep some. Eventually we headed down to the pool again and had a small breakfast there. He was not as into the pool this time around so we decided to just leave back home. Once home, he picked up on his regular daily routine immediately.

I realize now that it was actually a good getaway. It's just hard to remember this while you are going through it. It's hard to let go and relax and I can only do so in hindsight, you know? I am learning to embrace the experiences rather than fear them. I do it all in the hopes that one day my son can enjoy them and tell me so. Wouldn't that be something?

First Official Post

"Flash that million dollar smile," the high school year book inscription said. Those were the days. Happy and so different. Don't get me wrong, it's not that I miss high school or anything. Gosh no. But it's who I used to be. Smiling all the time... until life happened, sort of.

Life has been good, for the most part. A lot of ups and downs but nothing catastrophic. After high school came college, met my future husband, marriage, and then a baby. I won't get into all the details now as to how we came into autism, but I can say there is not too much smiling going on by myself and my husband.

We are lucky to have the happiest boy! He's completely unaware of what is going on around him. Lots of smiles and good times when we are home. If only we could live in a bubble, but we don't. As a parent, it is tough to see the cruelty around him and what will probably get worse as he gets older.


"Did you speak to your son?" said one of my students on a recent trip away from home. "Sure" I replied because I really couldn't get into the real answer. The real answer was " NOPE, I didn't speak to him because you see, he has autism. Even if I spoke to him he would be completely unaware of the phone, how it works and that mommy is on the other side. I can't ask him how his day went, can't tell him that I miss him and can't tell him I love him. I mean, I can, but he would probably be more into pushing the buttons on the phone then taking it all in. So my answer is NOPE, I did not speak to my son today." Sigh...not much to smile about.

Flashing the million dollar smile feels more and more like work every day and I just don't feel like it anymore. Maybe this blog will help me cope somehow.

Tomorrow I have an appointment with a new neurologist. Just because. Not because I really expect him to say anything worthy. Following the steps as usual. The last one we went to got mad at my son for opening and closing a door and for playing with the window blinds. He also wrote his report all wrong with "facts" he chose to write, for whatever reason. Seemed to me like he used the same letter he wrote to someone else and changed the name on top. Not excited about that.

Friday is our school open house where we get to meet his new teacher and class. He will be going to an autism cluster to begin Kindergarten. The last teacher barely knew how to handle the autism kids and had to be told about the GFCF diet. She had never heard of it. I hope this one is up to date with all things "autism."