Friday, November 22, 2013

Disney GAC, DAS, what's the big deal?

Disney has been one of our favorite places in the whole world. So much so that my husband and I lived in Florida for a year before deciding seeing our family in our home state on a regular basis was, in fact, more important than going to Disney World.  Although, that wasn't the easiest decision ever. 

Our son now seems to love Disney World even more than we do.  But when he was first diagnosed, I wasn't sure that we would ever get to go. How would my kid that struggles when he is in large crowds and obsesses over his favorite things ever be able to get through a day in the Magic Kingdom without melting down?

Then I found out about the Guest Assistance Card (GAC).  It was a little bit of extra magic that Disney offered to guests with disabilities so that they could experience Disney World without their disability getting in the way.  For us, that meant allowing Connor to go through the Fast Pass lane or the disabled access lane on most rides and allowing him to come back to certain rides over and over again.  We were able to follow the schedule that was in his head without worrying about him running into a roadblock that might derail our entire vacation.  This is a kid that talked for MONTHS about wanting to redo a 1 mile road race because he fell down once.  He wants to take back that fall so that the race is perfect.  Preventing problems like that is a pretty tall order.  But Disney did it.  And we have many happy, magical memories of our time spent there.  

However,  because of a few bad apples that defrauded the system, they have now introduced a new system - the Disability Access Service (DAS).  After reading about the DAS, I know it won't work nearly as well as the GAC in accommodating my son's needs.  We have actually used a similar system at both Universal Studios - Hollywood and at the Radiator Springs Racers ride in California Adventure at Disneyland.  The problem that I see is that it requires you to check in at the ride and get a return time.  Then you come back once the time written down has passed, and then you are allowed passage into the disabled queue or into the Fast Pass lane, depending on the ride.  And you can only obtain one ride time at a time.  So you can't get ride times for, say, Splash Mountain and Thunder Mountain Railroad so you can ride them in succession.  You can only get the next ride's time after completing the prior one.  That's an awful lot of downtime for a kid with autism, and there's only so much shopping you can do before you run out of places to take  him to wait.  

Many parents of kids with autism are saying that this system does not take their kids' needs into account.  And despite Disney's promises that they will work with individuals based on their unique needs, many parents are being told "there's nothing else we can do" when they ask for more assistance.  There has been much talk of this online as parents share their experiences and try to figure out how to work with Disney to ensure that their kids' needs are met.  We parents still want to go, but we want to make sure that things will go well before we commit that much money to a vacation.  We are used to having to plan and then make at least 3 backup plans, so finding out every detail we can is vital to making any vacation work. As is communicating all this to Disney to find out if there are other options available.  We are not known for being subtle when advocating for our children.

However, there's also been a lot of backlash from non-disabled people.  They say things like:  "Why can't you just wait in line like everyone else?"  "Why should you get preferential treatment?"  "The new system is fair; you just have to wait like everyone else."  "Just teach your kid to wait and behave."  "People just got used to not having to put up with the bad sides of their kid's disability while at Disney."

I think most of these people just can't understand how behavior can be part of a disability. The reaction that you see, the meltdown and tantrum, is a manifestation of that disability because the conditions are intolerable to the child's nervous system. It's behavior, but it's not a "behavior problem."  He's not being willful, and it can't be cured by disciplining him. It's a sign of a medical, neurological issue.  His nervous system and brain prevents him from being able to tolerate long waits or being trapped in a long line with a crowd of people. It prevents him from being able to understand "we will come back later" to a ride he is fixated on. 

The ride is tolerable because it's predictable. Lines, crowds, restaurants, shops, etc. are not always tolerable because of the level of unpredictable behavior that can happen. But a ride? My son has been to Disney World several times. We started with just a few rides and slowly increased his repertoire. He knows what to expect from the ride. He is focused on the rides. If we try to make him wait past his level of tolerance, his brain and nervous system will become overloaded with unpredictable input and that will cause him to have a meltdown.

Asking me to just put up with that meltdown is like telling the mother of a diabetic child to just put up with her child going into shock because their blood sugar is too low.  Telling me to just discipline him is like telling that mother to just spank her child out of a diabetic coma.

It's like telling the mother of a child that uses a wheelchair to just have them crawl on the ground because allowing them to use a wheelchair is avoiding the "bad side of their disability."  Or telling her she needs to just teach him to walk.  Everyone else can do it, right?  

My son's neurological system doesn't work like everyone else's. There are many things I wish I could "just teach" him to do - have a conversation, play with friends, and, yes, wait in line without getting upset.  These are things we have been working on for over a decade now with an extensive team of teachers and therapists.  Telling me to "just teach him" is not going to suddenly change his neurological condition so that he can learn these things faster.  He's learning at his pace and working as hard as he possibly can, so in the meantime, he might need some accommodations to make the world livable for him.  

I'm sorry some people find it irritating that his "wheelchair," his "insulin," his needed accommodation is the old GAC pass. However that will never stop me from advocating for his civil right to be allowed to go wherever non-disabled people go and for accommodations to be made so that his disability does not hinder his experience while there.

Monday, September 2, 2013

A little something else from Minecraft

Connor says this is Unicron from Transformers:

Monday, August 26, 2013

First Day of Sixth Grade

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Connor started middle school today.  He was excited to go.
Hope his first day goes well.

Friday, July 19, 2013

Military Families Deserve Better Than This

 

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Photo Credit:  AMFAS

After years of following advocacy efforts for better services for military families who have children with autism and trying to help out wherever I could, I find out today that new regulations will go into effect on July 25 that are a sad, cannibalized version of what advocates had been asking for and what these children need.  I can’t even tell you how disappointing it is that despite all our congresspeople’s public statements about how much they support our military and military families, that the program that we end up with, that they pass as law, doesn’t come close to what the needs are.  So, with some help from AMFAS (American Military Families Autism Support), I sat down and wrote the following letter to my representative, Bill Flores:

I am writing to you today to ask for your help with TRICARE's new policy regarding ABA therapy for children with autism.  I have to say, as the mother of a child with autism myself, I am horrified that so many barriers have been put in the way of our soldiers being able to obtain quality care for their own children.  So many people claim that they "support our troops," so there should be no problem obtaining state of the art healthcare for military families.  Sadly, this is not the case here.

The number of children with autism has reached epidemic rates.  1 in 50 children has some type of autism spectrum disorder.  There is a mountain of research showing that ABA is the best intervention for autism.  ABA has, according to June 2012 Senate Armed Services Committee testimony from the American Academy of Pediatrics associate executive director,

"proved effective in addressing the core symptoms of autism as well as developing skills and improving and enhancing functioning in numerous areas that affect the health and well-being of people with ASD. The effectiveness of ABA-based interventions in ASDs has been well documented through a long history of research in university and community settings. Children who receive early intensive behavioral treatment have been shown to make substantial gains in cognition, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups."

These men and women who fight for us, who defend our right to be free, should not have to worry whether their children are receiving appropriate or adequate therapy.  They should KNOW that the American people and its government stand behind them and are willing to provide them with the best possible healthcare for their children.   They should KNOW that if they get wounded, we will take care of not only them, physically and mentally, but that we will continue to provide care for their children with disabilities.  They should KNOW that if they are forced into medical retirement, that we are grateful for their service and will show that gratitude by continuing their child’s therapy.  If we all support the military as we claim to, this should not even be a question. 

In 2012 and 2013, many advocacy organizations, military families, and their friends and loved ones advocated and lobbied Congress for better ABA treatment for military kids.  Unfortunately, what has come of those efforts does not reflect what the needs are that these kids have.  TRICARE’s new ABA policy is far too restrictive and includes testing requirements that are outside the scope of what is considered best practices in ABA.  Again, ABA is based firmly in scientific research.  There are firm guidelines on how to best implement it, as well as how to ensure that it is working for each individual child. The restrictions in TRICARE’s policy are not at all based on those well-established guidelines.  It makes no sense to implement a program to provide ABA therapy and not use research-based practices to establish efficacy of that therapy. 

I am asking for your help on the following items: 

1) preventing the implementation of this new policy, set for July 25, 2013.

2) to support the inclusion of equivalent language contained in the Larson Amendment in the Senate version of the NDAA.

3) work with the House and Senate Armed Services Committees to hold additional hearings on this issue to ensure Congressional intent is translated into appropriate regulations by TRICARE and DOD.

I believe we are better than this, that military families deserve better than this, and that it is unconscionable to implement regulations on the healthcare of military families that only add barriers, rather than ensuring proper care.  I hope you will consider adding your support to this issue to prevent that from happening. 

Thank you for your time.

Please consider supporting these efforts by writing your own letter of support to your representative in Congress. If you would like more information, AMFAS has many articles on their site explaining exactly what the issues are.  There is also a FAQ and a discussion forum.  I hope every American takes the healthcare of our military families seriously and is willing to put their money where their mouth is by supporting better care for military children.

Saturday, December 15, 2012

Thoughts on mental illness and parenting


It's a really sucky day to be a parent of a child that struggles with mental health.  Connor's issues are not as severe as some, but we are doing everything we possibly can to help him through it.  He struggles with anxiety and OCD tendencies, currently.  This has been going on since he was about six or seven.  I decided it was time to pursue treatment when he was unable to get from point A to point B without performing some kind of ritual and when I realized I hadn't seen the kid laugh or smile in about a month.  You can say what you want and think that that's too young to make that sort of decision.  But once we started treatment, I got my kid back - seeing him smile and laugh again was worth it.  Seeing him finally relax made me realize how much tension he had been carrying around with him for months.  And now I'm that much more in tune with being able to spot that tension coming back so we can try to prevent it from ever being that severe again.

We've worked with various doctors to figure out the best treatment for these things and to ensure that his quality of life is as good as possible.  It's a balancing act, and it's made tougher, I think, because as a growing child, his body is constantly changing.  As he enters puberty, we also have to be on the lookout for possible signs of depression as that is something that many, many people with autism begin to deal with at that time.  So this is not a one and done deal.  This is an ongoing process that requires a lot of vigilance on the part of the parent to be sure that whatever treatment that's currently being used is appropriate.

However, getting appropriate treatment is beyond hard.  Navigating the mental health system is one of the worst aspects of healthcare.  Insurance companies don't want to cover it. Even if your insurance company does cover it, there are convoluted rules that require you to jump through all sorts of hoops to justify treatment.  Taxpayers don't want public health programs to cover it.  It is as if mental illness is somehow more of a choice than, say, heart disease or cancer.  Oh, how I wish that were so.

And I know we are not alone in this struggle.  As I read here:,

"The Centers for Disease Control and Prevention (CDC) find that about half of U.S. adults will develop a mental illness during their lifetime. One in four adults experiences a mental disorder in any given year, and one in 17 lives with a serious mental illness like schizophrenia, major depression or bipolar disorder. By 2020, mental and substance use disorders will surpass all physical diseases worldwide as major causes of disability."
Keep in mind that autism is considered an epidemic at 1 in 88.  So if 1 in 17 adults has some sort of severe mental disorder, this is NOT rare.
"Sadly, almost 40 percent of people with mental and substance use disorders never get treated. Those who seek treatment typically do so after a decade or more of delays, during which time they are likely to develop additional problems"
And treatments do work.  The success rate for treatment of serious mental illness ranges from 60 to 80 percent.  It is difficult to seek out treatment, but it is worth it, for both the person affected and their community.  However, that decade of delays speaks to the many barriers that there are to accessing affordable, effective mental health services.

According to the American Academy of Pediatrics,

"70% of children and adolescents who are in need of treatment do not receive mental health services."  
"For the families that seek services, 40% to 50% terminate treatment prematurely because of lack of access, lack of transportation, financial constraints, child mental health professional shortages, and stigma related to mental health disorders."

Clearly, we are not the only family struggling to access and maintain appropriate mental health services for our child.

So after reading a lot of commentary about the recent events in CT, I feel the need to say this:  Good parenting, love, and prayer are not going to prevent mental illness.  Can bad parenting and abuse be contributing factors?  Yes. But please don't assume that a parent can prevent mental illness either.  Trying as hard as I can to do the right thing and still watching my child fall apart from time to time is crushing.  Hearing statements from people that imply that mental illness is caused or prevented by parenting makes it even worse.

For more information on mental illness and to help advocate for better access to good mental health services for all, please visit NAMI - National Alliance on Mental Illness.