Vacation 2013 (Part 4) - Transition Day... Further Explanation

After speaking with my sister in more detail, she let me know that even though her daughter (that Asperger's now autism per DSM-V) enjoyed herself at Disneyland, it was mostly because she knew we were there for a few more days after the change took affect. If we had only been there for a few days, she admitted that she probably would've been extremely stressed with only being able to go on the rides one at a time. For my niece stress can quickly turn to anxiety, which leads to ticks or stimming (self regulating behaviors). It brings out the autism-like behaviors.

Vacation 2013 (Part 4) - Transition Day

Disneyland - Transition Day (Wednesday, October 9, 2013)

The big day, the big change to the GAC (guest assistance card) pass. We got up early, got through our routine and headed for California Adventure's Chamber of Commerce. We anticipated really long lines... there was hardly anyone there when we got there. That was good. There was a customer relations agent at every station. We went up and with a doctor's note in hand, told them the situation with the boys. Because of laws, it is illegal to ask what type of - disability a person has. They have a few standard questions which all boil down to: what happens when they stand in a long line?

So, we explained that our little ones have autism, that they cannot wait in a long line without having a meltdown, etc. So, they issued the DAS (Disability Access Service) passes:

Then they explained how it worked...

When you know which ride you want to go on, you go to one of the kiosks located in different areas of each park.

You present your pass and on the reverse side is a "worksheet" on which the attendant will note the time, wait time and subtract 10 minutes. Then write the time down that you can go to get on the ride. Similar to the fast pass they offer, only you go to a person and it's for all rides not just those that offer a fast pass. If there is a "problem" with the timing, we were under the impression that the customer relations person at the kiosk could adjust the time accordingly. Once you present your pass to ride, the attendant at the ride will cross off the ride, and you can get another ride put on your card.

We were very lucky that we were able to ride the rides the boy wanted early in the day, and the lines weren't longer than about 5 minutes. We didn't have to use the pass... at least not until the evening before we were about to leave. We headed to Paradise Pier to go on the Ariel ride for the last ride of the day and it had just reopened from being out of service. We stopped at the kiosk and were told it would be 20 minutes, after all there was actually a 30 minute wait time.

Our problem was that the boys had already seen the ride, The Little Mermaid. They didn't understand that they couldn't go right on it, and when the attendant noticed the boys start to get agitated she quickly asked if she could put "another ride" down, with less wait time. Another ride? Really? Not once did she offer to shorten the wait time, which we were under the impression she could do. So, in order to avoid a complete meltdown, we began walking back to our hotel room. Redirecting the boys attention the whole way.

This is our one experience with this new pass. My sister's family, of which my niece has Asperger's, didn't have as much of an issue, but she is able to understand and occupy her time until she's able to go on the ride.

Since we've gone to Disneyland I've read several articles that say the pass doesn't work and needs to be redone. The one thing I love about the pass, it puts the person's picture on it that it's issued to. The picture on the pass should reduce the fraud that's the cause behind the change. Other than that, there's definitely more work that needs to be done. In our case, as I suspect others have the same issue, it's rare for our boys to let us know they want to go on a particular ride before they see it.

From a mother's heart - I understand the need for a change at Disneyland, but since they are a leader that many businesses look to, how will this ultimately affect those on the spectrum, and others with special needs?

Vacation 2013 (Part 3)...

Disneyland - Day 2 (Monday - October 7, 2013)

Once the morning routine was over, we went directly to California Adventure to get our passes (since we had an issue the day before about getting 2 passes). We anticipated long lines and it was, luckily we ended up getting to the front relatively quickly. We ended up waiting for about 20 minutes, maybe a little longer. We had to do some major "redirecting" of attention and walk around where we were for the boys, we were lucky they stayed relatively calm. (The lines were not as bad as a few days after we left from what I've been told by others after we left).  When we went in, we had planned on getting two GAC (Guest Assistance Card) passes with access for 4. One for each son, and since the day before we'd run into an issue by having two passes with 2 people on each, we wanted to make sure our family stayed together. That way if the boys showed interest in different rides, we could go on them separately, or we could all go on the same ride at the same time.

Now, before I go any further, I realize that there are some people who think that kiddos with autism or other special needs don't "deserve" any special treatment. I will say right now that we don't ask for anything "special" we ask to be able to let our children have fun like any other child is able to. We would gladly stand in a line for more than 5 or more minutes if it didn't mean our kiddos would have a meltdown because of sensory overload. Because they don't yet understand that "taking turns" means that it could take more than 5 minutes before they could go on a ride. That they actually understood the concept of "time" as we know it. I would gladly trade places with anyone of them and their child for just one ride, if it meant my kiddo could wait, not get so anxious that they start stimming (self-stimulating behavior) to offset the jitters and sensory overload. We try to do our part to make things "fair" (even though we know life isn't) and only use the pass if the line for a ride is more than a 5 minute wait.

Disneyland - Day 3 (Tuesday - October 8, 2013)

We went to Disneyland's City Hall on Day 3 to get the GAC pass, and were met with a longer line, and a lot more "attitude" by some of the guest services personnel. Now I believe that as Wednesday approached many people, like us were continually asking questions about the new system. I'm willing to "ignore" the attitude at this point simply because I don't believe in "shooting the messenger". I figured that since the employees had been instructed "not to release" any information on the new system, and the "management" had released that the people had been in training for the change for the "past month", this put the employees in a bad position. Luckily it was pretty quiet and we didn't need the passes very much at all.

By the evening of the 3rd day, I have to admit I was getting pretty anxious about October 9. The changes so far had been very subtle, but were definitely showing signs of change. Whether it would be a good or bad change. Whether or not we would even consider renewing our annual pass... It was a bit of a restless night for me, and I am generally a very optimistic person. I imagine everyone there who had to deal with ASD (autism spectrum disorder) and any other special need was feeling the same way.

From a mother's heart - change can be good or bad, but no one knows until it begins. It's hard not to be anxious when a lot is riding on the coming changes.

To Be Continued (again)...
<3

Vacation 2013 (Part 2)...

Disneyland - Day 1

We are home! We had a really good vacation and, like most people - we needed a vacation from the vacation. That is why we plan our vacations so we will get home sometime on Friday of our week off. That way, we have Friday night and all weekend to settle back into the "home" routine. So, here I begin a recap of our trip to the "happiest place on earth" during the midst of change for those who are in need of the GAC (Guest Assistance Card) in order to help their kiddos enjoy the "happiest place on earth".

I am the type of person that I have to plan in order to be ready for a vacation. In other words, I have a routine for the week before the vacation, as well as a general plan for the vacation. As anyone familiar with autism can attest, if you don't have some type of plan, the kiddos will remind you really quickly of why you need one.

This time I was really behind in getting things done. The night before we were ready to head out to the "happiest place on earth", I was ready to pull my hair out. However, the boys were very "excited" - even though no one mentioned the "D" word yet, they knew... the minute the luggage came out... they knew just what that meant. So for the next few hours amidst our "regular routine", we tried to get things finalized to roll out early the next morning. By 9:30 p.m. the boys were finally tired enough to go to sleep - we were too, but we still had to finish the last minute packing.

Packing for kiddos on the spectrum is, well, a challenge. Many kiddos have certain things, toys or items that they want available to them virtually all the time. For parents of kiddos with ASD (autism spectrum disorder) it can be difficult to stay in touch with what comforts your child at any particular point. Most of them have certain "things" that can calm them down, some will keep the same "comfort" item for years, but not always. If our boys have a meltdown or episode, we know that the weighted / compression vest will help them to "regulate". We know that a car with wheels that Daniel can spin around between his fingers will help to put him in "his happy" place. Anthony currently likes his iPod. However, not just "any car" will appease Daniel, and don't try to give Anthony Daniel's iPod. Like having a teenager, you have to know "what's in" that day.

We got to Disneyland a little before noon on Sunday, got settled into our hotel room, then headed to Disneyland, or rather Disneyland's City Hall for the GAS (Guest Assistance Pass), knowing they would be changing the system on Wednesday, we wanted to try to get as many "rides in" for the boys as possible... Just in case. Because we have 2 boys with autism, we were talked into getting 2 passes for 2 people each. DON'T EVER DO THIS!  Put as many people in your party on each pass as you can. They were starting to "slowly" institute "new" rules beginning Sunday, not the following Wednesday. We ended up being told that they could "only put one group / one pass" on the ride each time it started. If we had not been told by a previous cast member that we could all ride together, the boys would've exploded when one had to wait for yet another cycle before they could ride.

Luckily most of the rides that the boys ride were less than a 5 minute wait on that day.

From a mother's heart - with the first day over, the second day in question, we went back to the hotel room to start our evening routine.

To Be Continued...

Vacation 2013 (Part 1)...

It's always nice to get away, whether it's for a day, a week, or two weeks. You get someone to watch your home, take care of things, get your mail, your paper, etc. Head off to someplace far away... of course far away is a relative term. You may be 10 miles or 1,000 - but it's nice to get away for a bit. The hard part... Kiddos on the spectrum. On one hand, you need to be able to let them know that everything is alright, they are safe, and it's a new adventure. That can be hard enough, but, at the same time you have to find a way to keep certain routines in place. This way they won't totally meltdown - hopefully. For us, our vacation consists on Disneyland twice a year. We try to keep it well spaced, and keep a general routine on travel.

We have been coming here for a few years now, so we do have a pretty basic routine for coming and going. We are blessed that my sister's family will go when we do. The boys know that we will stop for a break, then stop for breakfast - all together. They also know after breakfast it's off to Disney. We get our hotel room, unpack the car, have a snack and head to the park the first day. Even though it's months between visits, they know the routine. We keep the morning routine the same as home - wake, eat, meds, dress and head off for the day. (At home it might be for school or errands.)

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We keep a time for snacks, lunch, snacks - again, supper, etc. Food routine seems to be crucial for us. There is nothing worse (to me) than a hunger meltdown - why? because it's usually the easiest one to prevent. Going back to the hotel room late afternoon, early evening usually proves a little more difficult. They boys (and us) are usually a little "over-tired", which makes for the very likely scenario of a "big" meltdown by one or both boys. So, we finally realized that if we vocalize the: medicine time, walk time, bath, relax and bed-time.

We bring the boys iPods (a must), their favorite pillows and we even bring our own bath towels and their favorite toys at the time. Definitely a plus.

Hopefully the whole week will go well. I'm sure we'll have the usual "ups and downs", but it will be ok - just a different location. We will have a good vacation.

For those who've heard about the new Disneyland and Disney World rules that go into effect tomorrow, the 9th of October, regarding the special needs pass, I will try to write again tomorrow (otherwise as soon as I'm able) to let you know what we find out.

From a mother's heart - may we all be blessed with a little time to get away, and may our kiddos on the spectrum - not receive such a shock that they can't - enjoy it.
God Bless!

Don't Miss the Forest for the Trees

We all have things that we work on... or out for that matter. Everyday we have something that we strive to do, to learn, to fix. For some it may be school or a job, for others research and others... themselves. However, many of us get to the place where we are so focused on something, we can forget to see the bigger picture. We "miss the forest for the trees".

Today I had a great conversation with a friend, who is also a mom of a kiddo on the spectrum. During our conversation, we covered what type of behaviors are autistic, and the fact that there are so many "cross over" behaviors (behaviors that are the same in more than one type disorder). Because of this it can make it difficult to properly diagnose and/or accept a diagnosis of ASD (autistic spectrum disorder). Many times a kiddo may have autism, a mental disorder, another developmental disorder, or any combination of these. There are some myths (with autism) that many of us may be tempted to believe, even when we know better. I also realized that sometimes too much information can mislead us into thinking something is or isn't what it seams.

There are so many myths about autism. There are truths within some of the myths. Then there are out and out lies untruths that have become a myth. The following are some of the myths I've heard several times, I've known some are bull--- others I've even looked up to verify myself. They generally begin with something like:

People with Autism.....

...always have extreme behaviors (myth)
               - may have some extreme behaviors - not all (truth)
...have extreme behaviors last for a "long" time (stimming, meltdowns, etc.) (myth)
               - may have extreme behaviors that last for a while, or may last only seconds before they transition to another behavior (truth)
...are not affectionate (myth)
               - may be more affectionate than anyone you know. (truth)

...aren't social at all (myth)**
               - are not always social in ways that stereotypical people might be. They can be loving and interact with preferred family [the one's                  they've brought into their world]. (truth)
...don't play or interact with others (myth)**
               - generally don't have the same social skills like neurotypical people, but they can learn. (truth)

playing with the same thing at the same time doesn't mean they are or aren't playing or being social

...don't understand what's going on around them (myth - lie untruth)
               - everything I've read, heard and learned proves this is wrong - many autistic individuals have been able to break out their silence                   with modern equipment. Computers, etc. Those who've written stories / books have given the proof that this is not true.(truth)
...have long lasting meltdowns, episodes or tantrums (myths)
               - some with ASD little to no meltdowns, or simply have very short ones. It all depends on the situation and the person. (truth)
...must "look" a certain way (myth - lie untruth)
               - there is generally no way to tell if a person has autism by just looking at them. It requires watching and getting to know them. (truth)
...always have meltdowns if their routines are changed (myth)
               - may or may not have a meltdown with the change of a routine, though most routines set up will provide great comfort.(truth)

I've heard people combine these myths with "always" and/or "never" many times, and I admit that it makes my skin crawl. Nothing is ever "always" or "never" (at least not in this life). I've had to re-examine the way I look at things many times because, I admit that I am guilty of getting caught up in some data about autism and other disorders. I begin to look at things as if through a telescope. I will focus so much on the information I am currently researching that I may temporarily lose track of what I've learned previously. Then I have to be reminded that autism is indeed a puzzle and each piece is part of the bigger picture.

I envision the puzzle that is autism looking like a rainbow with a beautiful sky, a small threatening storm cloud in the background and luscious ground below. Every piece fits together, but not all pieces are the same. Some pieces have more "red" than others, then there are pieces that are all blue, then there are pieces that have several different colors in the same piece. Like a snowflake, even if two look similar there will be differences.

Out of all the possible behaviors that can exist with someone who has autism, there is no "exact". In other words, kiddo's who flap their hands may have autism, but not all kids with autism will flap their hands. Some people on the spectrum may twirl around in circles for "a long" time, some may twirl around a few times and be done, others may not twirl at all.

Some may seem to have no routine at all and not be bothered if a current routine is upset. However, we (as I learned recently) don't always recognize when a routine has been established. For example, for a while this summer, Steve would take the boys for a walk when he got home and they had finished their ABA (applied behavior analysis) session. Other nights, if he got home later, we would eat and then he would take them for a walk. Basically the same routine, but a little different order. However, the boys see the routine and "their schedule" - so on nights when they didn't go for their walk right away, there would always be conflict.


From a mother's heart - autism awareness to me is: learning, sharing, teaching and loving enough to say "I understand we are different and I love you for it." (of course I think this should apply to everyone in ours lives anyway.)      Each tree is a puzzle piece.
God Bless!

**  I believe that when using the word "social" in regards to autism, there needs to be more clarification of what defines "being social". For instance a child who loves hugs and cuddles is not necessarily being social - it can be a sense of comfort and safety. we all need. Some people with autism can get the same result from a vest or a "squeeze machine". It's all individual. I do not believe for one second that this can constitute "social" or "anti-social" behavior when looking at autism behaviors.

Some Questions to Ask...

I've talked to several parents recently who are still fairly new to the "world of autism" - shoot, I'm still "new" at dealing with it too, even though I've been doing it for the past 4+ years. I don't think we ever truly become "experts" since things change daily. The only difference for me is that I am an "information freak", if I hear about something new about autism, I have to research it. Some of the most important questions we can ask (at least to me) are those for input from other parents and professionals that have/work with kiddos on the spectrum. We all need that input from others in similar situations, and not just from those who've dealt with it for a longer period than we have. Others want to know what questions to ask when looking for a/an:

• doctor; therapist / psychologist: gastroenterologist; occupational therapist;
• dentist
• vision / optometrist
• psychiatrist

*School & ABA (Applied Behavior Therapy)

Talk to other parents, teachers, etc. of ASD (autistic spectrum disorder) kiddos for referrals try to get several. Check your insurance for coverage - if you are able to use any of them, schedule a "1st visit" and ask your questions. If they won't answer your questions - move on.

Some are basic questions to ask anyone who will be teaching or caring for your child:

1. Do you currently have patients, students or clients with autism?
2. Are you aware of autism issues? i.e., autism aggression, SPD (sensory processing disorder), ADD/ADHD, seizures, gastrointestinal issues?
3. Are you aware of what ABA is? (you'd be surprised how many physicians aren't really sure of what it is.)
4. How do they feel about medications? (you don't want someone who will think you just have

Anything else that you think should be asked, or others have recommended you ask, do it. This is your loved one we are talking about. While asking the questions, watch the person's demeanor, how they are reacting to your child, do they seem to have a good bedside manner? Gentle? Understanding?

Next, if you find that "feels" like the right person, you should think seriously about using them - especially if they have your child's best interest at heart. Remember when you ask the questions, that just because a doctor doesn't have a child with autism in his/her practice, doesn't mean you shouldn't use them. You need to look for someone who says they will look into it if they don't know something. That way (as long as you listen to that inner voice) you may be the one to teach that doctor something. The key is to find someone who genuinely cares and is willing to learn and will truly care for your little one.

* The next topic is ABA and school - what questions I have learned to ask (again, take advice from other parents and ask any questions that you feel are relevant as well.

1. For school in particular: do you use an ABA based teaching method?     Do you mainstream? If so, how much time?      Do you deal with potty training (if relevant)?

For both:

1. What is your "mastering" criteria?                                                                                                                                               (This is the total number of correct answers a child will give for any program that will be expected before going to the new target)  For instance, many schools require around 80% accuracy. In other words, out of 5 times being asked something, if they get it right 4 times - usually 2 times in a row, the target will be considered "mastered" or "learned". (I feel that the minimum for "mastering" should be 100% - if you are sure the kiddo really "has it", I believe that moving the target to generalization is totally appropriate.
2. What process do you do you use?   There are:            ABA, PRT (Pivotal Response Training), Floortime or DIR (Developmental Individual Difference Relationship Model), RDI (Relationship Development Intervention), TEACCH (Training and Education of Autistic and Related Communication Handicapped Children), SCERTS (Social Communication / Emotional Regulation / Transactional Support)  [All of these are addressed and explained here:                                                                     http://www.autismspeaks.org/family-services/tool-kits/100-day-kit/treatments-therapies]
3. What type of trials do you use?                                                                                                                                                 There are: mass trials (ensures success of trial, then fades the prompts);   discreet trials: breaks down tasks into easier steps for learning. Again, ABC method is used and generally the steps are broken down into SD's (discriminative situations).                       For example: SD 1 might be- "put with xxx" (when mastered) an new target would be introduced.     SD 2 might be - "give me xxx"   SD 3 might be - "what is it?"             The third item is not "technically" a trial, (but I think it should be -   :P   ) - Generalization (this is asking the kiddo about something (s)he has already mastered in a generalized setting).

I've learned the best providers will use a variety of trials or SD's (discriminative situations) to make sure the children really understand the "whole" process / target. ABA incorporates the A.B.C. (antecedent - behavior - consequence) concept. The kiddo is asked or told to do something (antecedent), depending on the behavior (behavior) the child will receive a preferred item and "yes, that is xxx", "good job" etc. or "no, try again" with a non-preferred item as a reward for trying.

http://www.users.qwest.net/~tbharris/aba_train.htm

There are as many therapies as critics and supporters for them. Most of the data shows that any program that incorporates the ABA approach is the most beneficial.

From a mother's heart - I hope this is helpful. I'd love to hear of any questions you've thought of that I haven't addressed. It's always good to pass on information we learn. God Bless!