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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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