Living In Three Worlds

I work in an elementary school with special needs children.  Recently I ended up in the Autistic Pre-K because they needed a hand and I have the experience.  I was not ready for the emotions it would bring up.  While there are many things I could bring up one thing happened that made me flinch and I thought I would write about it here.

One could say I wear three hats.  First I am a parent of an autistic child.  Second I am a teaching assistant.  Third I am in grad school for ABA therapy.  All of these things touch on the world of Autism in different ways.  So while I was helping out in the pre-k I overheard some of the aids talking about what they think happens at home and what they think the parents are or are not doing.  This hit me like a blow to the gut.

Flashback to a moment over a year ago when my son was having issues at school.  He didn’t have behavioral issues at home though.  The teaching staff came down hard on me as a parent stating we needed more structure in the home and blaming us for his behavior.  At the time we were highly structured in the home and I had more freedom to follow through with the ABA principles I had been taught.  Still faced with these people who were supposed to be “professionals” and know what they were doing all I could feel was tremendous guilt because they convinced me through a position of authority that I was doing something wrong.  Letting emotions get the better of me I started giving in to punishment more than reinforcement for things he did at school, which if you know anything about ABA the closer temporally to the behavior a consequence occurs the more power it has and punishment can elicit problem behavior.  Then behaviors started popping up at home and while continuing to hear this negative discourse from the school it acted as confirmation bias that I was a terrible parent.

Flashforward slightly to graduate classes and talks about behavioral contrast.  When under extinction conditions in one environment a behavior can increase in another environment despite there not being any change in the second environment.  The light bulb, that was what had been happening to my son.  We put many problem behaviors on extinction at home and the behaviors increased at school.  Again a huge wave of guilt for not trusting myself in the first place when I knew it wasn’t what we were doing at home (per say) that was the cause of the behavior.  They needed to address the problems working with us because it wasn’t a lack of structure at home that was the problem it was that the school wasn’t as structured and could not follow through with extinction like we could at home.  If I had put my foot down and made them work with us instead of rolling over and taking the blame I could have avoided so much mess.

Flashback to next school placement.  They had a token economy in place for good behavior but if you had too many negative marks against you then you could not go to the store to spend the tokens.  My son was already having too many issues when he got there so he was never able to behave well enough to get to the store.  The problem behaviors got worse.  He would make a small mistake and when he was told he made a mistake he would freak out.  He called the staff liars and things would rapidly escalate.  I thought that it didn’t seem right that he earned money for the store but could never spend it but I kept my mouth shut because therapists were making these programs and they worked for the other kids.  The school here didn’t directly blame me, in fact, I got overtime working at that program, but there was this underlying feeling as I came in there weeping and desperate not knowing what to do that they sympathized and believed when they said that they felt my best was not enough at home.

Flash forward to more grad school.  Talking about token economies and how they don’t work if the child can never access the backup reinforcement.  Suddenly it all made sense.  In non-behaviorist talk, he wanted to go to the store and had earned money for it but could never get there.  When he made a mistake he became frustrated because he was trying and failing and at that point, he lost control and things got worse.  Again another massive wave of guilt because instead of doing what I thought was right I trusted people who were so called experts and they were doing the wrong thing.

Flash forward to talking to a co-worker right before working at the pre-k.  We were talking about a student who was having behavior issues.  We have seen the student with their parents and the parents are highly critical and authoritarian.  The student will constantly call himself a screw-up, a mistake, and many of his behavior issues occur when he is telling himself he can’t do anything right.  My coworker and I were talking about how his behavior might occur because of the way his parents treat him.  Not bad enough to be abuse but not helping.  Then talking about what we could do to counteract some of those negative effects.  It helped us brainstorm ways to solve the problem and looks for areas that might be lacking at home we could work on more in school.

So back to where this all started.  I am in the pre-k listening as two of the aids are talking about what they think the parents are or are not doing.  I understand from being in education how that can have positive effects in finding solutions and how it can help with stress when you are desperately trying to help a student and it isn’t working as well as you would like.  I understand from being in school for ABA that even if it appears one way from one position that isn’t always what is going on and there has to be transparency and collaborative approaches for the best results.  Frankly, it is just if not more common for the issues to come from home than the other way around I am just fortunate enough to have the educational background to avoid a lot of the issues guess work can cause.  However, as a parent of an Autistic child who had so many issues because the school wasn’t doing things the right way (even though other children were successful) all those feelings of hopelessness and guilt and self-hate came right back up to the surface.

The plus side of doing what I am is that I can talk to teachers, parents, and therapists in a way that helps all parties understand situations better because I have played all three roles.  More often I find myself stepping far outside of my role in any one position and going the extra mile to facilitate those conversations.  However, in any of those roles, you have to be willing to check your own behavior.  As a parent, I could have spoken up more and if I did not feel confident doing that I could have researched more when I felt something was off to support my position and gain that confidence.  As a student, I could have consulted with my teachers to get more information.  As an educator, I should have been more willing to share my experiences with others in my field to show them that how they interact with a parent can have deleterious effects on the parent and their home interactions.

I am not saying to not trust the education professionals.  What I am saying is all of these roles are hard and no one is perfect.  A system works perfectly until it doesn’t and when it doesn’t maybe the answer will come from the school, maybe a therapist, or maybe from the parent.  Communication and problem solving are key to success.

ABA Therapy Good or Evil

Potential Trigger Warning- Reader Discretion Advised

Some people do have PTSD and have experienced trauma because of poor implementation of ABA services.  If someone shares these feelings with you please do not tell them “it worked for me.” Listen with an open mind and respect that their experiences were different from your own.

I took a few days off from writing a blog post to really give myself a chance to think about how I wanted to tackle this subject. If someone asked me to answer the question is ABA therapy helpful or harmful my answer would be “Yes.”

Imagine you have a hammer.  You can use a hammer to create beautiful things but you can also use it to destroy property or hurt people.  It is not the tool itself that is evil or good but the person who is wielding the tool.  The person might even try to use a tool properly but due to a lack of proper understanding causes damage.  Imagine a person trying to hammer in a screw.  They understood that a screw can hold things together and that a hammer is used to hit small pieces of metal into the wood to hold them together.  Misunderstanding can do a lot of harm.

If you know my blog then you know by now I love lists! So I am going to list some of the concerns brought up by people around the internet and address those issues.

  • ABA is the same as training a pet and my child is not an animal. If people hate any part of my post it is going to be this part and I am going to get really almost cruel in my bluntness before I resolve so please bear with me.  YES, your child is an animal so are you and me and all people.  We are all classified as animals! In one biology class that was one of the first questions he asked the class was if humans were animals and many people said “no” and were quickly corrected.  Now if you are a religious person I do not want to disqualify your belief that God made us above animals.  Regardless of my belief if that belief influences your judgement then I do not want to be ignored because of a perceived conflict.  We are set apart from other animals in regard to our intelligence.  However, we are similar in most other ways. Behaviorism is used in animal training but humans are, by virtue of our intelligence, infinitely more complex. Our complexity is the reason that I can train a dog in a month and humans take a lot longer to learn.  Behaviorism studies how our environment affects our behavior and as an extension of that our learning.  Is a dog going to learn when he hears the dog food box open he is going to get fed?  Is a child going to learn when you open a box of cereal in the morning that he/she is going to get fed? So why do some kids need ABA and others don’t? Well, why do some kids need to do math problems 100x before they understand it and other kids only need to do it once? We need to stop trying to label this as “training my child like a dog” and start thinking of it as “using the environment to teach.”
  • Compliance Training, you can’t say no! In a corporate world, compliance training focuses on teaching the rules that apply to the job.  Basically, teaching someone what they are or are not allowed to do.  An abusive example: Not allowing a person to go to the bathroom until they have finished 12 hours worth of work. A healthy example: Now allowing a person to hurt small animals. With autism, these things can become harder to determine if the training is abusive or healthy at first glance.  There was a child I worked with who would not act appropriately in the bathroom.  In this scenario, I was not allowed to go into the bathroom with the child. The child would use bathroom breaks to escape from getting school work done, spend excessive periods of time in the bathroom and would play in the toilets and sinks.  With this situation, the bathroom became a restriction.  Telling a kid they can’t go to the bathroom usually is not okay.  However, the student was given multiple chances to go to the bathroom a day and given an extra bathroom pass once a day if needed. Honestly, the child had a ton of bathroom breaks, in reality, the process just restricted bathroom breaks to appropriate times. Once in the bathroom, the child was given a set amount of time to get everything done.  I would stand at the entrance and give a “30-second” warning when the time was almost out and count down the last 10 seconds.  The time was set to give enough time to get in and get out without time to play.  Sometimes compliance training means you can’t say no. If I am driving my son somewhere a seatbelt is not a choice.
  • Removing comfort behaviors, stop stimming. First, some stimming behaviors do have to stop.  These take the form of injurious behavior.  I know a lot of people when they go to the dentist and their mouth feels numb they constantly poke at their mouth with their tongue.  They are trying to get sensory input. Some people on the spectrum do not feel sensation for certain things as easy as a neurotypical person.  Self-injury can be a result of trying to get sensory information just like a person poking a numb spot can. Alternatively, if a person has too much sensory input and they are trying to drown it out they can hurt themselves so that their focus narrows to the one painful thing instead of the sensory onslaught.  If it injures a person then it needs to stop. In regard to nonharmful stimming, I walk a very narrow middle line. In an ideal world, these people could stim all day and it would not be a problem.  In the real world, people are awful and those behaviors can make people a target.  Just today I saw a video from the news of a man out with his mom playing Pokemon GO who had a condiment sprayed on them.  One of the people who did it said, “Yes, I got the retard.” As a mom or a therapist, I try to find healthy opportunities for stimming that do not make the person stand out. For example, my son loves to spin things so I found a keychain that was a flat round disk (ocean themed) with another metal disk on top of it with sharks you could spin.  It gave him the chance to spin something in his pocket or even in the open that did not draw attention like it would have if he was spinning in circles. The subject overlaps with my next topic.
  • Ableism, discrimination. Should an autistic person be allowed to stim if it makes them feel less stressed? Yes. Is it wrong that these people should have to find ways to “look normal” to make other people more comfortable or to avoid abuse? Yes. Does this mean I will take a hard line on this issue? No. Now this is a personal opinion, my job as a therapist and a mother is to teach to the best of my abilities ways to improve the life of my client and child.  Sometimes that means finding alternative stims that fit in and other times those options are not available and it means letting them do what works for them. It is on a case by case basis. I have to keep in mind that what should be and what is are two different things and I need to do everything I can to reduce risk of abuse. I work to help these people fit in as best I can and then turning around and fighting tooth and nail to help normalize autism so that I don’t have to keep trying to force autism into a “socially acceptable format.”  As with anything that can cause discrimination you have to avoid risk situations and fight to remove the risk at the same time. It sucks, it hurts, and it is not fair but I would never be able to live with the guilt if someone I worked with got hurt by others because of a behavior that I could have taught an alternative for.  Sometimes there are not alternatives and it isn’t fair which is why I fight both fronts.
  • Denying escape. Some people feel that extinction means a child cannot escape.  Let me say that any goal in ABA therapy should be one a child can accomplish that slowly pushes the bar forward.  The best example is if I put a child in a room with one door.  Before I closed that door I would build another one and make sure the child knew and could use the new door.  Then and only then would I board up the old door.  When a child uses an inappropriate behavior (like hitting) to escape from something they would be taught an alternative behavior that would let them escape and then the hitting behavior would go on extinction.  If the child cannot do the alternative behavior then ABA is not being used appropriately and that is not okay.  This is the perfect example of applying ABA practices inappropriately.
  • ABA therapy ignores my child’s feelings. Now this statement is kinda true.  As a practice ABA therapy does not concern itself with feelings but only with behaviors.  At least, it ignores feelings in as far as paperwork is concerned. There can be a balance that is sometimes overlooked in education. Let’s say a student is punching a wall.  I could infer that the child was frustrated from multiple things. I could then put my hand between the wall and the child’s fist, say that I can see that they are frustrated and ask them to tell me what is wrong. On paperwork, I would only write the behavior and the consequence, not the inferences.  ABA focuses on facts and I cannot say for a fact that the child was frustrated. I know what happened before, during, and after the behavior as facts that I can use for the purpose of data collection.  However, part of intervention can include teaching and using more emotional based language.  In that case, I might record behavior started after losing a level on Mario.  The behavior was hitting the wall and the consequence was the therapist put their hand in between the wall and the child’s fist and discussed emotions. All of these were observable events.

Is ABA therapy evil, it depends who uses it and how they use it. Parents have to be vigilant. There is a lot more I could have covered and I could have gotten into a lot more detail on some of these subjects (which I probably will later) but this is getting long as it is.  Restraint was one topic that I did want to get into more detail on but want to handle in another post.

What are your thoughts, feelings or questions on these topics? Is there anything you would like me to cover? If I get enough response I might eventually do a Q&A section!

 

Getting Into the Right Placement

Navigating the school system can be a nightmare.  Trust me I did it this past year and even knowing what is going on it was still challenging.  There are groups out there designed to help you and be advocates for you in the IEP process.  I do not know much about these groups as I did my work independently.  One of the biggest challenges is navigating a system you do not understand.  This post is designed to help break down some of those illusions.  Yes, they do give you rights and give you the whole “speech” but being told what your rights are is different than understanding them.

  • Your child is money. The first and in most ways the evilest part of the system is that your child is a check.  Ever wonder why schools are so dead set on attendance.  They give out awards which seem like punishments to students who got sick.  If you miss more than a few days you can get in trouble with the law and even when schools neglect other issues they are OCD about checking and reporting attendance.  Well, each school gets money each year based on enrollment.  In an ideal world ,they would get a set amount and if the child had to move that amount would be prorated for that month and split between the schools.  In the real world, most schools get paid on a day by day basis. If your child is in the seat 3 out of 5 days in a week then the school only gets paid for those 3 days.  That creates a huge insentive to keep your child in school.  If you kid is having a bad day, needs a break, or you both just feel emotionally abused by the system that is just to bad.
  • Extra programs cost more without a comparible pay bump. If your child needs additional services with the district then they have to pay for the additional staff to support it.  Now often special education students will bring in a bit more money per days in their seat than a normal student.  However, many of these systems have been in place for a long time and have not adapted for inflation so what they need vs. what they get is not comparable.  Now schools are often rated based on their test scores which can also determine funding.  So it becomes a tug of war game.  It might become profitable for them to spend lots of money to boost special education children if it raises the average on their testing scores.  A school that specializes in or has a high demographic of special education students can hurt the score.  If they have enough they can cover it with grants but if they don’t then they will be out money to help that they are unlikely to see returned.
  • Admitting failure is costly. My son was transferred to a nonpublic school after a bunch of school transfers.  For several months he basically took a cab back and forth 30 minutes a day to school.  If you have ever taken a ride in a cab you can just imagine that cost.  Then they have to pay for the tuition.  If they can they are going to hold onto your child because it is a significant loss to let them go.
  • Pushing for your rights can hurt you. If you feel your child needs special placement fighting for it can hurt.  You have a few avenues.  Giving up on the system entirely there is the homeschool option.  For some students this is better but in most cases it isn’t because they need to learn social skills.  If you choose to pull your child out of school yourself expect to pay for it yourself.  There are some public electronic schools that use district funds but you teach at home such as K-12.  You can kiss any full time job goodbye though.  Some parents choose to put there kids in private school and charge the district.  First, you have to pay upfront out of pocket and the district can fight you if they feel your child could have been served within the school district.  Expect paying out of pocket, potential legal issues and you might lose. Some schools have the option to move the child to a different school in the district.  If you request it and the district doesn’t back you then they do not have to cover transportation.
  • Better scoring schools do not mean better schools. One of the most diverse and amazing schools in our district has the lowest score.  Many of the parents bought into the idea that better scoring schools where better and transferred their kids.  So at the amazing school there are a lot of low income families and minorities.  The more parents transferred the lower the scores got because low income frequently have troubles with academics.  They also have a higher population of special needs students.  What they are is receptive and they work hard to help the students.  One of the worst schools in the district is one of the best scoring!  I transferred my son there though this was due to location and carpooling rather than score based.  The school had a high population of wealthy families and tons of extra curricular activities.  Except for a bully problem the school is amazing for a neurotypical child.  My son tried to run off campus multiple times because he wanted to “come home and be with mom mom.”  Since I was in school in the afternoons a friend would pick up her and my son from the school.  Running was a huge issue with him so the school requested that she pick up the boys in the office.  Due to a lack of parking if you pick up your kids you have to park across the street.  She requested special parking privileges and the principle basically told her no.  I was there (and since she was the one picking them up I let her handle it) and she said “I am concerned about having to take a child who is prone to running across a busy street.” The principles response was to the effect of “I don’t know what to tell you it is what you have to do.” Fortunately my friend can be b*tchy and manipulative.  She drove right up to the pick up line, moved the blockade that is up before school hours and drove up.  When maintanance saw her and challenged her she stated “I need to pick up a special needs child from the school office.” She got her way because she did not give the school a choice. Other problems happened at that school and if I had the skills to cope with it at the time I would have sued.  I went in with a fever and was told about his behavior and started to cry.  The special education teacher turned to my son and said “look at what you are doing to your mother” and I did not have the presence of mind until I lowered my fever to realize how abusive this statement was.  With the income level in that part of the district I got the feeling most parents with autistic children had them placed in private school out of pocket and this school had never had to deal with it before.  It was a mess.
  • Even good schools might be a bad placement. We ended up in a behavior intervention program in a special school.  The teachers were amazing and trained well and we loved them to death.  That said, my son got worse because it wasn’t the right fit for him and we cried when he had to leave.
  • You are protected from extended expulsions. Your child can be expelled but not for long because they are protected because they have autism.  If they try to expell your child for more than 10 days they have to prove it was because of something not related to their autism.
  • In some cases your best option is to wait and suffer. My son was running off campus, not accessing the curriculum, and hurting people.  It took multiple school changes to finally get him in a good school.  I never had to pay anything out of pocket because I waited and suffered and since the school came to the determination that they could not service him they had to pay.  You might be able to speed up this process if you vocalize your belief your child is not in good placement at IEP meetings.  There are hidden costs, at the behavior intervention class the principle had to deal with my crying and when I appologized she said she was used to it.  Often when parents got to that point they had already had to quit jobs or lost them because they were called into the school so often.  I was lucky that I worked for the school district (hard for an employeer to fire you for not showing up when they are the same people calling you away).  It hurt though and while money issues are looking on the up and up we will likely end up homeless between now and when the money comes in. (See my gofundme link at the bottom of this post).  I wish I had an easier road to recommend but if you don’t have the funds and means to fight back there is little you can do.
  • You can put conditions on transfers. The last school my son was sent to had a later start time and pick-up time would have been 10 minutes after I needed to be at work.  I made signing the IEP contingent on finding a way to get him transportation that did not cause me to lose my job.  In the end took him to work with me (20 minutes farther away) so they could pick him up before I had to start and still get him there in the approprate time phrame.
  • Remember you do not have to sign the IEP. Schools will sometimes make it sound like what they recommend is what your child needs.  This puts parents in the position of feeling guilty if they don’t sign.  If you don’t understand it sign it later, take the time to think about it and don’t ever feel pressured to sign.
  • If you fear for the safety of your child do not wait homeschool. Another friend thought her child was being abused at school.  He would often come home hungry and she was concerned he was not getting the food she sent in.  She walked into the classroom to see other students beating her childs head into the wall and the teacher did nothing.  While she fought to get him removed she kept him out of school as long as she legally could but she had to send him back.  Her child was nonverbal so he could not report what was happening for himself!  When a hearing was done with the school board they took the word of the teacher over hers.  She pulled him out to homeschool him.  Collecting his things on the last day of school the teacher handed her a large trash bag, containing all the food she had sent in (and toward the end she started sending in junk food she knew he would not refuse just to make sure he ate).  Even now the district tries to call her up and pressure her to put him back in public school (cause as I said your child is money).  Not all places are equal.  I am in a decent state for autism care and they messed up other places are far worse.

It is hard to see your child struggling and it is hard to know where to turn to get help.  When your in the cycle of watching your child struggle it is easy to lose hope.  There is light at the end of the tunnel and there are proper placements that will work but it is a process.  The process can hurt, and even now with my son in proper placement my family is still struggling with the long term effects.  However, you can get there if you are willing to stand your ground.

Feel free to share this blog with others! Here is the link to my gofundme page.
https://www.gofundme.com/2d2tp9g

 

Parenting Employment and ABA

One of the most successful people I ever met said that life was a series of compromises.  Few people know this better than parents of special needs children.  There are stories about parents who choose to quit their jobs in order to be able to better care for their children.  I do plan on writing about navigating the education system and IEP’s on a later date but today I am going to focus on a special group.  Parents who choose to become ABA Therapists.

I have met more than one parent who decided to go to school for ABA Therapy when their child was diagnosed.  When my own son was diagnosed I decided on that course.  My thought was if my connection with my child was going to be hindered by autism then I wanted to learn the best ways possible to connect with him.  Now I never planned on getting a job in the field, it was just nice to be qualified to work if I needed to support my family.  Well, many years later the time came and then the reality of the situation hit me.  Schedules for ABA Therapy are awful if you want to spend any time with your own child!

In an ideal world, you would work similar hours as your child so that you both spend the evening together.  In ABA world, the majority of the jobs available are all after school hours.  Think about it, most of the kids who get in-home services only need them when they are home (after school.)  While some kids are homeschooled and have a greater availability companies are looking for those with an evening or open availability.  The therapist has to work well with the client so it is preferable to hire someone with an open schedule.  If they work well if the few “morning” clients they have then great but if they don’t they didn’t end up hiring someone they now can’t use.

Options do exist but you have to get more creative.  Here is a list of a few things you can do to help.

#1 Look into ABA jobs within the school district.  Remember these hours may not be the same as the actual school day.  For example, in my school district, the ABA hours were 8 am to 5 pm even though the school day starts at 7:45 am and ends around 3 pm.  Meaning you might still need a babysitter.  If your child ends up in a non-public school summer breaks may have differences and spring breaks might not line up also so keep that in mind.

#2 Expand beyond children.  Autism is a spectrum and not everyone on it will be able to live independent lives as adults.  Looking for jobs in adult care centers can give a greater range of times.

#3 Expand beyond autism.  My passion is autism so this is not an area I have researched extensively but ABA has a lot of uses.  Exposure therapy is in the realm of ABA and it can be used to help those with major phobias.  OCD can be helped with ABA also.  Autism is the most common use for ABA at the moment but it is not the only use.

#4 Research your company.  I plan on talking about this in more detail in a different post but there are a lot of people in the autism community who feel traumatized by ABA therapy.  If the company uses punishments or unpleasant stimuli to gain the desired result you may want to look elsewhere.  Some people who treat autism believe that it is okay to be autistic and they try to use therapy to help with improving standard of living.  Others believe that autism is a neurological disorder that needs to be cured.  What they treat and how they treat it might be similar but intent can make a huge difference in treatment.

#5 Look for “ABA” compatible jobs. Currently, I work as an independence facilitator in the special education department for my school district.  These people work 1-on-1 with students in and out of the classroom to help them succeed.  Some of these students often also have ABA therapists who work with them at different times.  Communication between departments is often found wanting and having a degree in ABA means I can take quick directions from the ABA therpist and implement them appropriately.  Also, since other IF’s do not always “get it” I can help them figure out ways to supplement the ABA therapy and explain what they need.  In essence, you can act as a bridge between the two.  No, you won’t get paid more for it but this can open the door to a lot more jobs.  Working with a camp or daycare, basically, any location where autistic people might be participating.  Reminder, if you are not a BCBA do not do it!  However, you can use basic principles to help.

 

I have a few more posts in mind that I will try to get to in the next couple days including:

Getting into the right placement in the school system, ABA evil or helpful, and the “problem” vs. “neurodiversity” debate.

Now that I am finally committing time every day to this blog I would appreciate sharing (if you like it).   Eventually, I plan on trying to getting a premium account and expanding this into a professional style blog.

 

On a personal note: My family has come upon hard times financially.  I hate to share on a blog to help others and if I did not have my son I wouldn’t ask for help at all.  However, as a mom I am going to swallow my pride and share my gofundme post here also.

https://www.gofundme.com/2d2tp9g

 

Comic Con San Diego

So I recently went to Comic Con San Diego with my son.  The first couple of days I went without him and he came with me on Saturday.  The event was great but there was not as much information as I would have preferred on disabled services before the event.

If you do choose to take your autistic child to comic con there are several things you should know.

#1 Kids under a certain age require their own badge that you must get at the convention.  That means before you can get in line for disabled services you have to get in line for the badge.  Lines are the nature of the beast.  In the case of my son he usually curls up in a ball and tries to zone out to his games when he is over stimulated.  That was difficult in a crowded space where people push through at any time.  Depending on the nature of your child’s sensory issues having a wheel chair might make the experience easier.

#2 Disabled services have people who can run to wait in lines for you in key areas like autograph lines.  Not knowing this in advance I didn’t even try to get premium autographs because I thought the lines would be too hard for my son.

#3 They do have areas for moms who are breast feeding to take their children to eat.  Parents with autistic children can use these areas if their child is feeling overwhelmed by the crowds.  However, these areas are just curtained off areas in the main hall so they are still very noisy.

#4 I may not know everything, the convention was very bad about providing exactly what services they did do for those with disabilities.  It is very likely they do a lot more than I have listed and I just do not know it because their communication about those resources were lacking.

#5 Get a room!  If you can’t get a room at Comic Con and you have to commute then don’t do it alone.  Comic Con is a sensory overload for normal people so it is important to have a close place to escape.

#6 Talk to the staff.  I was at the BBC counter and wanted to look at what they had.  When we stopped it was in a bad location so I told the booth attendant that my son had autism, that he was having sensory issues so he was curling on the floor like a ball and I was trying to find a way to see what they sold.  They directed me to a location that I could sit and not be in the way and still look at their products.

#7 The Spaghetti Factory! This place was amazing!  It is located outside the convention center.  By the time we got there my son was trying to climb under furniture and the wait was 30-45 minutes.  I straight up told them he was having some autism issues and asked if there was a tucked away place I could wait (I had little hope though).  They directed us to a quiet closet/stairwell that was completely unoccupied.  No one questioned my presence there everyone was amazingly understanding.  When it came time to order they were willing to take the time to help me figure out options that would work for us.  After I ate and I was thanking the staff I was informed in the future when they open at 11 there is no wait and they would be able to make the experience even better.  Seriously, I have never felt so “normal” in that type of situation in my son’s life because they acted like it was normal!  EAT HERE!

#8 Prompt.  My son got his picture taken with “Zombies” screaming at us acting like they were going to eat us.  He rolled in a ball and took the picture and was okay because I explained to him multiple times it was fake, it was a picture exhibit, and I showed him other people doing the picture.  Even before the event, I warned him about the crowds and the dangers of running away.

I do not recommend this event to most parents with autistic children.  It is a challenge but if you can make it work then it is also a very rewarding experience that can show you just how much you can deal with and come out fine at the end.  After the event my son expressed a lot of his frustrations but also said often “at least we got to go to comic con!” He was very proud of being able to do something so overwhelming and being able to make it through to the other side.

There are a lot of people coming and going but there is a huge level of understanding and compassion.  I had to leave a line and when we came back my son was determined to go to the display.  When I told him that we would get back in line the man who was in front of me overheard and offered me my place back in line.  The kindness shown was amazing!

 

Autism & Authority

While I was busy at Comic Con an event occurred that highlights serious issues in our culture.  A behavior therapist was shot in the act of helping the person he served.  The therapist in question was black and police shootings of black people IS a HUGE problem that I do not want to casually dismiss.  However, my focus here will be on the fact that it was later stated that the person the officer was aiming at was the autistic man.

 

Our culture quickly dismisses disabilities that are “invisible.”  Education for the general public is often left wanting.  For example, a kid with cerebral palsy who has a walker going to a school would prompt the school to speak to the children in the school about appropriate behavior around the student.  These instructions serve to help protect the student and also open a forum for the other students to discuss and learn about the disability.  When teachers facilitate the educational conversation students end up more receptive and empathetic.  In the case of autism, especially when the student is high functioning the teachers do not discuss the disability or what it means.  Often this leads to students doing things that will prompt inappropriate behavior from the autistic student.  For example, if a student keeps brushing the arm of an autistic student when they walk by that sets of sensory issues and the autistic person starts to hit the neurotypical student.  The event could have been avoided if there had been proper education and often it is the autistic student who gets in trouble.  If I touched you and hurt you in the process hitting me would not be a good response but it would be understood to some degree.  When it happens to an autistic person that does not happen because the “touch” does not always appear to others to cause discomfort or pain.

 

How does this tie into the shooting in Florida?  Police officers are not trained to deal with people who are on the spectrum.  This is not the first incident of an autistic person being shot.  In one case in LA the officers who shot an autistic person said they had to make a split-second decision and their attorney stated that “they are not social workers (Hanson, 2015).” That perfectly highlights the issue, the police do not have the training to determine or handle people on the spectrum that they determine to pose a risk.  So many autistic individuals show signs of aggression it is no wonder shootings happen way too often.  These don’t even highlight the worst cases such as students who are children and are arrested because school staff do not know how to handle their charges.

 

These instances happen less than the shooting of black people in America because those with autism often have others to care for them.  However, I can only imagine how the risk increases exponentially when the autistic person is also black.  As Trevor Noah said on the daily show, our police jobs are too broad and we need to narrow the scope of their job to real emergencies.  In this case, the best person to handle the situation was already there doing that job and unfortunately he got shot for it.

 

Hanson, H. (2015, March 24). LAPD Officers Who Shot Unarmed Man With Autism Awarded Millions In Discrimination Lawsuit. Retrieved July 24, 2016, from http://www.huffingtonpost.com/2015/03/24/allan-corrales-george-diego-steven-washington-shooting-lawsuit_n_6931408.html

Disney and Autism

I have had the privilege of going to both Disney World and Disneyland.  No, I do not have a lot of money I just happen to have family in both locations.  Disney used to allow people to go straight into the fast track lines if they had a disability.  Unfortunately, this was abused a lot with people doing things like renting a disabled person to tag along with.  The new system has you go to an info booth (unless you have mobility issues then you can do this at the rides) and let them know what ride you want to go on.  Cast members give you a return time based on the length of the line and you return at that time to wait in a short line.  This system can be used paired with fast track tickets, and if you are using the return time you can wait in line for another ride.  It also allows you to sign up from any info booth in any of the parks so a lot of the wait time is cut down in the walk from where you are to were the ride is.  The process requires going to City Hall and registering every 2 months.  Disney never asks what disability your child has or ask for proof, but they do scan the tickets of your child and those that use the return time with you to watch for abuse.

Staff at the info centers are extremely helpful, and can be used for learning opportunities.  My son is verbal, so I went up to a cast member and showed my son the name tag and explained how he could go up to any person with a tag like that if he got lost and tell them “I lost my mom”, and they would take him to City Hall for me to find him.  It took him a while to understand, first he thought he was suppose to go straight to city hall, then he thought he was suppose to go to the specific person I pointed a name badge on.  Since tickets had to be scanned at every ride we used return time for I pointed out the name tag and explained again with every person until he generalized going to find someone to cast members and not a specific person.  Everyone I used as a display person was very understanding and helpful in being used as a prop.

During our Disney World trip our son was 4 and had a lot more problems than he does now.  We purchased a backpack carrier from kindercarry.com to assist us when he was having issues and boy did we ever need it.  He got to walk on his own but if he started to throw a fit or we needed to move him quickly because of problems putting him in the backpack made it easier.  This was a two person job, one person to put on the backpack and the other to put our son in it.  For him the compression alone was a great help!  The down side was staff often did not know how to handle having a child in a backpack carrier and many rides have height requirements.  For one ride we have to take him out 3 times, once at the entrance, half way through the line, and right before boarding.  This doesn’t seem bad until you consider that it was a long walk, but a short line so it was only a couple minutes between taking him in and out again. On the whole though the carrier was a huge help, especially at the end of the day when normal children get overloaded and we still had to travel from the park back to our rooms.

The Disneyland trip just happened recently and he is now 7.  Fortunately, disney encourages bringing and using portable entertainment systems like the DS in order to help children with sensory problems handle the lines.  Jared brought his 3DS and was so enthralled with getting more people on his street pass (you collect things as you pass other people in real life with a 3DS) that he was able to tune our the rest of the world.  He does better when we are moving so the only time it felt like he wasn’t a normal child were those times when the line was to short to give him the DS and to long for him to handle.  There were a lot of issues with holding hands making his hand sweat, which made him try to avoid holding hands.  The large crowds make it easy to loose someone, so vigilance is still important.

What tricks do you use to get through theme parks?  Do you have experiences in other theme parks?  Please leave your thoughts in the comments below and don’t forget to subscribe!