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!

An update and a little more...

I was hoping that taking that leave of absence from work left me more time to blog. Ha! Right! That seems not to have worked out considering my last post was in August. I was way too optimistic and unrealistic. From now on I will cut myself some slack and blog when I can. Period. I had also hoped to separate both kids blogs, but that does not seem like it's going to work either. It will be one blog and one blog only. I will also blog about my life or my attempt at one and not just autism. It's a brand new ME!

Quinn (1) is making steady improvements in the motor skills area. With the help of PT, OT and ST he keeps improving on a daily basis. Not crawling or walking yet, but he is taking steps with support and also goes into knees and hands with little help. Fine motor skills are also emerging left and right. For example, he now holds his sippy cup proudly. He also signs "All done" and for "more." He is a super happy baby; everything is funny, everything makes him laugh. What a joy!

Kai (8) is also improving by leaps and bounds. At times, though, it's hard to remember that when he is scripting the entire Pillow Pets commercial or Elmo Holiday DVD. Urgh! He is reading at 2nd grade level (he is in 3rd grade) and doing double digit addition- even carrying over 1! He loves school and has started to use better-structured sentences unprompted! Imagine that! We are still using the doctor that is four hours away: ruling things out and going back to the beginning by carefully testing and acting on blood/urine/stool results. He is still on a GF/CF/SF/PF mostly organic diet. Up next, we will be going back to the "toxic metals" chapter. We had dropped that to focus on gut issues. Now that his yeast is under control and testing is back to normal we are ready for this stage again. 

He continues to attend hippotherapy and a social group both once a week. He has visited Sea World, local fair, the movies, bowling and even sleepovers with his social group. He LOVES it!

Both kids had a fabulous Christmas. Quinn seemed interested in the gifts, and Kai wanted to open all the presents- even if they were not his!

OK, off my soapbox for today.

Here is hoping everyone has a fantastic 2011!
May the force be with us all.