5 Tips for Taking A Child on the Autism Spectrum to Walt Disney World

5 Tips for Taking A Child on the Autism Spectrum to Walt Disney World

                                      Noah the Scientist at the end of the Imagination ride in Epcot

Traveling on vacation with children with special needs can be a very overwhelming idea and task. But with a lot of preparation and research, even with the challenges of Autism a family can have more fun than they could have imagined. This was the case for us this past December, I have composed here my top five tips ( full article including 5 more additional tips coming to a newstand near you)



1-Obtain a mobility pass, this is basically a fast pass, where the person with the disability as well as their party ( up to eight people) do not have to wait in the main line or wait to get the fast pass. Pass holders proceed in the fast pass return and show the Disney employee / cast member the mobility pass which works as a fast pass. This pass is obtained at guest services of the first park visited. Cast members from Disney do not need “proof of disability”, but the child needs to be present. However, bringing a doctor’s note, IEP coversheet with disability or other identification may be needed if the cast member is in training and a manager is not around.



2- Make restaurant reservations months in advance with a Disney agent, or on the Disney vacation site. This is an especially important aspect when dealing with food allergies and specific diets. Disney Chefs are very accommodating and can make almost anything with the proper notice. Reservations can be made six months in advance and should be made as far in advance as possible. The week of the guests trip a phone call should be made to confirm everything. When dining the chef will come out to the table to go over the menu and take requests. This also cuts down on wait time. All locations that serve food have informational packets with the ingredients used in the food sold. Menus are available on line at allears.net



3-Travel at times when the parks have lower attendance. The parks are very over stimulating for everyone. Traveling when the parks are less crowded cuts down on wait times everywhere, crowd noise and unexpected bumping into other people. Disney is typically lighter in attendance the week before Labor day through October 1st, late November through December before winter break, and again the second week of January through the first week of February



4- Be flexible -Traveling with a child on the spectrum is challenging, and flexibility for all involved is key to success. Plan on taking a lot of breaks, and to not be in the park all day. Fortunately the parks are loaded with Play areas and all of the resorts in the area have pools.



5- Be open to positive changes, Disney’s tag line is “a place where dreams come true” and the perspective of many parents that have taken their children there with autism is just that. Parents have reported a variety of improvements in their children after a trip to Disney World such as the child being more engaging , being able to handle waiting a bit longer in lines to even drinking out of cup when previously not being able to. A lot of patience, love and a little pixie dust can go a long way.

Noah and his cousin holding hands, something he never did before this trip. It is a magic kingdom!
 
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Noah and the Bus

Noah and the Bus




First of all I am overall grateful for the bus that picks Noah up for school every day. It is usually less stressful than the stressful drop off system. Where you are driving your car through a too small parking lot where people are shouting to have the kids jump out of the cars. They need to keep the line moving, but with all the cars and people and they shouting, Noah was stressed every morning, and getting him it the car was a daily problem. The bus is normally fine however, when something snaps in his mind, all bets are off.



Today was one of them mornings; the bus is running late as usual, Noah was exercising with the Wii Fit, and not really eating all of his breakfast when he began to get frustrated with every activity. Because he could not do it, the Wii fit basically is designed to sense your center of balance, and his is always off. So on days that, he is more unbalanced than usual, it is way off, and will result in him not being able to complete the tasks. So this can compound two problems, the problem that he is now frustrated in what he isn’t accomplishing, and the fact that he is unbalanced to begin with, which is the actual cause of his frustration being out of his control.



The unfortunate aspect, in the morning rush, is you don’t see it coming, and frankly a lot of the time you do not see it coming. There can be tells, but on this morning there were few to none, none that I saw at least while getting his bag and lunch packed and getting him ready.



The bus pulls up and is honking, Noah is still trying to complete the obstacle course, and he is stuck on it, he needs to finish it, so telling him you are giving him 20 laptops if he gets on the bus will not matter at this point. So I have to just turn it off. He then starts to run through the house and I have to catch him and get him to the door. He will not put on his jacket, his shoes, or carry his bags. I have to carry all of this and him to the bus; only, it is not possible to carry all of these things at the same time. He takes off and I get his stuff to the bus while he just runs around the yard refusing to go to school.



The aide on the bus can’t help, not allowed to leave the post, why they do not have an additional aide I imagine is due to funding. So this leaves him and me at a standoff in the yard. There is nothing that will get him on the bus, I cannot threaten or bribe. I only can catch, run faster and scoop him up and put him over my shoulder like a sack of potatoes. I do this, and put him on the bus, with no shoes, and no jacket. The jacket fell off in the house, he wants it, but I don’t go get it because all of the kids on the bus are waiting, they have issues too.



It’s a terrible time when it is happening because of the stress, anxiety involved, and the fact there is no patience in the adults involved either. They want Noah on to get to the next stop, they probably deal with this type of stuff all the time, and it is not a daily occurrence here, but it happens enough. But the point being, there is no help, even if you’re asking or pleading, or even just asking for what they think you should do. They have no suggestions, and they do not know what to do.



The most frustrating aspect is there is no currency to work with, in these particular moments. Children generally behave based on consequences of their actions, both good and bad. And when his mind snaps like this, there is no scale, no consequence that is high enough to make him comply. There is nothing that can be taken away or given to make his mind snap out of the fight or flight response. So the only thing that can be done is to physically catch him and put him on the bus. There is no preparation that can help, it is not as if I can decide to take away the exercise or the computer or the games, they are not the problem anyway. And the alternative is to just have him sit and wait for the bus, but having done this in the past, I learned this will only bring more anxiety since the bus does not show up at the same time. And even if it did, there would inevitably be some kid somewhere having a bad day that will delay the bus.



So the only thing I can do is put up with it and accept that some days this will be the case. After it’s over I need to decompress and center myself, and train to just run faster.



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Well they say Einstein had a form of Autism, turned out well for him

                                                 The Genius at Work

Noah has been very apt with technology most of his life. He has been capable of setting the timers on the VCR, all of the clocks in the house, and the DVD recorder. Some adults do not even know how to set the timer on their VCR/DVD recorder, Noah just figured it out without being shown. He only carries this ability to reading, nothing else that he has learned has come from learning on his own, or being modeled.




He started messing around with the computer when he was tall enough to see the keyboard and would peer at it in a curious fashion when I would be doing some work at the computer. Little did I know that allowing him to play with the calculator and play on some child websites would lead to him being able to create his own screen savers, install, download and eventually corrupt and dismantle part of the operating system on his own computer.



The disappearance of the main operating system happened yesterday, and the new computer that Joe and I purchased around Xmas (instead of swapping gifts) became worth every cent that I still owe on it. For if he was using my computer without my knowledge, all of my work, my book, and everything that matters that is would be gone. I do have most of my stuff backed up, but that is beside the point. The time it would take, to replace and put the material back in, if it would ever work properly would have been horrible. And some of it would have not been replaceable, because there are new things in my computer that I have not backed up yet. So thanks to the people of Dell helping us finance this computer, life goes on.



Noah’s talent with technology is one of those things that amaze me about him, and also causes us to need tons of money in the bank. For he takes apart and destroys things with his curiosity, one day though I hope if I have been encouraging him properly and his self-esteem stays high he will do something with this talent. Maybe he will be an engineer or an inventor and he can repay us for all of the many things big and small that I have had to replace over the years. And most importantly, I hope that he does some good with his talent, and does not become an evil genius. His self talking about bombs does not really concern me, because that would be silly, but I do hope he doesn’t’ play with his imaginary bombs at school. Schools tend to not be so understanding about these types of things in this day and age.



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Part three - Communication Build Up

Communication Build Up




The number one challenge with children with Autism is communication. Anxiety and Sensory issues are a huge component also, but communication still reigns as the number one problem, because without it, the other two are bigger problems because now the child on top of it all cannot express to you why they are behaving the way that they are.



Communication problems are in more than one area. There is the fact that many children are not verbal, where they have few or no words, or they have a very limited vocabulary. Only children with Aspergers have a large vocabulary, sometimes even greater than typical children. But the communication issue does not stop just at the lack of words. It also is the inability to read body language, facial expressions, and the concept of personal space, the little nuances we use to convey meaning, and the biggest one that the world exists beyond ourselves.



Verbal ability is the easier one to teach, because you can show pictures of objects and activities and drill these ideas and pictures into a child’s head. This is where ABA (Applied Behavior Analysis) succeeds; it has been proven to dramatically increase a child’s vocabulary. We used it for 2 years and it greatly increased Noah’s vocabulary of less than 20 words, to that of a typical 5 year-old ( when he was 6) He still struggles in this area, because the English language does not always make literal sense.



Excerpt from Little Squares with Colors: a Different way to look at Autism

I have explained what a figure of speech is, but it seems to go in one ear and out the other. So I find it amusing most of the time. When I get a song stuck in my head Noah wants to see it, and now he offers to help rinse it out. Now that he has more language he can expand this a bit. Saying that it’s a disc in my head and we need water.


I first notice the literal thinking, when I teach him to wash his own hair.


“Ok, now you have the shampoo on your head, so put your hands on your head”

Noah does this while standing in the shower.


“Okay, now move your arms back and forth.”

 He drops his arms to his side and swings them back and forth. After this I am more careful when explaining things, than I already was. I am especially concerned with explaining what would happen if he got shampoo in his eyes. I think it’s best to leave the burning part out, because I have the image of him seeing flames shooting from his eyes. And if he thought that, he would never use shampoo again.



I still have to watch the figures of speech; I really am surprised how many there are: Daddy’s on a roll! I am so hungry I could eat a horse!


Sometimes it’s best to not say anything.


The literal thinking is a later obstacle, what comes first is teaching a child the words for the things in their environment, and teaching them about their emotions, which is a very difficult task.



A Picture is worth a thousand words



Pictures are your friend in autism if your child is visual, which a great many of them are. Take pictures of everything your child interacts with on a regular basis, including the people in your life. Pictures are used to teach what an apple is, and who Aunt Jenny is or Uncle Mark. Noah every day had to go through a pile of cards with everyone pictures on it to memorize their faces with their name. Either by stating the name of the person in the picture, or by being told a name and he would have to touch the corresponding photo. Pictures can also be sequenced to teach an activity such as how to wash your hands. We also used pictures to teach Noah how to get ready for bed. The pictures were taken of his bathroom, the bathtub, sink, toilet, pictures of him washing his hands, drying them, turning off the TV, reading a story, and being tucked in. He would remove each picture after we did the task and placed in a bin at the bottom of the board. Then I would replace them the next day, you can do this for just about everything. And you do it, until one day, your child starts to do the tasks by your verbal prompt as opposed to the picture. I remember when I finally could but bedtime, to bed, such a feeling of satisfaction. Of course getting him to STAY in bed was a whole other issue, and I will save that for a different entry.



Emotions were harder to teach, he memorized the words from looking at the same pictures of people smiling, or looking angry, even bored. We had pictures of him also looking angry, bored, tired, happy, sad, and he did memorize the words, but I couldn’t get him to get the emotions. Not until I videoed them, I learned he was able to absorb the emotions from TV from one day watching the movie Homeward Bound. Near the end of the film when the pets are reunited after being separated its very overwhelming with joy and tears, and Noah, the man of few words started to cry. But it gave me the idea to make videos of him for him to watch. So we made lots of videos of Noah, and he learned to connect the feeling the video gave him, with being there also.



Patience is a virtue, and good teachers are saints



Teaching communication to children on the spectrum though goes in tandem with understanding the other two factors, anxiety and sensory issues. This is why I wrote about them in this blog first, because you have to understand these issues will influence how successful any learning will be. The best success we have had was when we understood this fact, utilizing small sessions with in the session. Letting him work with drills for short periods, and when he seemed fidgety, restless, needing to stim or just getting very frustrated it was time for a sensory break. And after an hour or so of work, a period of quiet alone time for him, which gave time for myself and the therapist to go over what we just accomplished.



Unfortunately science and therapists have not yet come up with a proven strategy to teach “theory of mind” (the ability to know things happen outside of your mind) or all of the smaller subtitles that come with communications, those things we take for granted. When we are tired and maybe are not interested in doing something, or when we are excited and want someone to share in that joy, these types of subtitles just elude autistics, and behavior therapy can be used to help control the more extreme emotions of the child, and the frustrations. But so far, learning personal space and concepts like it are more trained into the child as opposed to where they come naturally. And because there are so many, and we are all different, it is a nearly impossible task to expect people on the spectrum to “get something” that does not come naturally to them. It is no different than expecting a diabetic to just make their own insulin. But for now, there are no injections that can be given to a person that lacks this communication skill. There are dietary interventions that do help with this area and I will be covering them in the near future.



All you can do is your best, be tolerant, patient, and do not take anything personally. We all can work on our communication skills, children without them teach us how important our job is to teach them, and also how to better communicate with others. They also teach others who do naturally have the ability to communicate how fortunate they are, and maybe that will help encourage more bravery in those that lack it.



C. Dagnelli Author of Little Squares with Colors: A Different way to look at Autism

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It's not a cure, but it is the next best thing

When I decided to write a book about Noah and his Autism, I knew it wasn’t going to be a bible about how I cured him. Mainly because he is not cured, and I thought it was more important to feature how we function and accept it. Though it is true, we have improved the situation greatly from where it began we also do not know from one day to the next what kind of day he will have, and therefore what kind of day we all will have. We also do not know what the future holds and what kind of new problems will surface or even old ones we thought were just bad memories. This is why I choose to focus on the present, since only you and your place in it is in your control.

So a blog is a natural step, figures it makes sense to share the day to day, good and bad.

A typical day here involves my husband waking at about 5:40 for work, I usually awake then but do the best I can to squeeze another hour before Noah is up. From the moment I open my door I am greeted by our two golden retrievers Fred and Chewie, usually I hear their tails beating on the walls of the hallway with a steady rhythm once they hear me rouse from bed. Once I open the door the fun begins, Fred is usually holding something in his mouth and whining, Chewie and him are following me quickly anywhere I go…which is almost always the coffee maker where I make my mommy fuel. Next on the line of annoyance is Sami the cat, he is usually whining heartily for more food since he ate it all over night, or the bowl is just dangerously low. The final cog in the machine of annoyance is Noah, who is also very hungry and starving, and somehow has the ability to bounce around even though he just awoke. Most mornings he next gravitates to the computer. Which is where he spends the next hour and half before the bus comes to pick him up for school. Routine is breakfast there, he gets dressed around 8:30, and the bus is to come sometime around 8:45. Then it’s mostly peace and quiet until about 3:20, not completely because the dogs require a lot of attention and Fred really hates the cat across the street, he barks at it even when it is in its own driveway. But regardless, it is a very important part of the day that can be filled how I choose, and gives me much needed space to contemplate and complete the things that need to be done.

Every day with Noah is spent teaching him the things that typical children just understand or get on their own. Some days are much easier than others, and sometimes what can be the most shocking is when you don’t see the meltdown coming. Mostly because he was doing well, almost where you can forget he even has a problem.

There is nothing wrong in my opinion to look for a cure to a problem, condition or disease. But from what I can figure, is while science is out there trying its best to find a cure for Autism, maybe the only thing we can do is adapt to it. Accept the things we cannot change, change the things we can and have the wisdom to know the difference.