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.

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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!

 

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