my thoughts on Applied Behavior Analysis (ABA) – Autism

my thoughts on ABA
*The opinions expressed in this post are solely mine and based on our experience.

When the words “Your child has Autism” are spoken, most parents begin searching for ways to help their child. The psychologist offers advice, doctors suggest medication and therapy, friends refer to characters in movies or geniuses, other Autism parents recommend solutions that worked for their child. But one of the most common therapies you’ll hear about is Applied Behavior Analysis (ABA).

Autism parents invest tens of thousands of dollars per year on ABA, and many children spend thirty to forty hours per week in this intense therapy.

When I learned what true ABA is, I wasn’t a fan. Many therapists sit children down in a chair across the table and work intensely with the child. They will also focus on one skill such as putting a shirt on dozens of times in one session. This may work for some kids, but what about the ones who are constantly on the move, e.g. my son, Jeremiah? Jeremiah has learned to sit for longer periods of time, using fidgets* and routine, but working on something he’s not interested in (there aren’t many things at this time) would prove futile.

Some therapists use a reward system to get the child to perform, they may say, “After you put the puzzle together you may play with bubbles.” Jeremiah wouldn’t have been able to follow a similar direction until very recently. Even at this time he’s not quite there. Directions that are part of his daily routine are more at his ability level right now.

For example, because we’re working on “First/Then”* concepts at home and at school, he’s grasping what it means. I can take his doodle pad (which he loves and always has with him), and say, “Eat your snack first, then you can have your doodle pad.” But, to have him engage in an activity he doesn’t like, most anything besides puzzles, work boxes, peg boards, or coloring, you would have a meltdown with a crying, screaming child.

Frankly, I don’t want my child crying and screaming because someone wants him to learn his colors, look through a book, or get himself dressed. We push through on certain hygienic rituals like brushing teeth and taking a shower whether he’s crying or not, some things have to be done. The world can thank us later.

But, him crying and screaming because someone is making him learn to put his pants on or be involved in a group activity is not what I want for my child. I agree with constantly working with a child (with plenty of uninterrupted free play in between), we do this. We could work on education more, such as talking about colors and the like, however, we work on letters, shapes, and numbers on his doodle pad that he always has in hand.

Every time we get him dressed we walk through with words what he needs to do (in the beginning we used a lot of hand over hand teaching and less words), “Shirt over your head, arms in,” “Put your pants on, lift your leg, put your leg in.” It’s taken a while, but he is now helping to pull his pants on and has been taking them off for quite some time. 🙂

This is Jeremiah’s childhood and I want him to enjoy it like any other kid. I don’t want him miserable, working on the same skills over and over, hour after hour. Many ABA therapists will repeat the same skill over fifteen times in one session and I believe I’m being conservative with that number.

all children deserve a childhood

A family member recently asked me if ABA can work for some and not for others. Sure. ABA can produce skills, but in our case it hasn’t. We’ve used a modified form of ABA, but more on that in a bit. The true, follow the guidelines ABA has actually caused our son to lose skills. I’m sure many parents who stand behind ABA are shocked to hear this. You could say it was because of regression that he stopped using these skills, but he lost two, and they’ve never resurfaced.

When Jeremiah entered preschool he was using the sign language for “more” and saying, “maw” in the correct context. We shared this with his teachers, aides, and therapists, and most of them fostered his skill in the right way.

However, the speech pathologist did not.

Every time she worked with him, which was one day per week, she would do so at snack time. She would withhold his gold-fish crackers from him, and require him to use the sign for “more” and hand him ONE fish if he did. She would repeat this twenty or more times every time she worked with him. Because gold-fish crackers were highly motivating for him, that’s all she focused on.

Do you know what her tenacity resulted in? Jeremiah stopped signing and saying the word “more.” Completely stopped.

As for the modified ABA I mentioned, our amazing Behavior Specialist is the one who’s helped us with the adaptation. She’s not a fan of ABA in it’s true form either, but she will modify it for a child.

Here’s an example of modified ABA in a natural setting. We worked on something that Jeremiah was doing that we wanted stopped; he was hitting the t.v. during movies (sometimes because of excitement, other times seemingly just because). Lia* suggested we pause the movie each time Jeremiah got too close to the t.v. At first we pushed “pause,” walked up to him and gently moved him back the distance we wanted him from the t.v., and calmly said, “Scoot back,” as we moved him. Once he was a certain distance from the television, we pushed “play” and praised him, “Thank you for scooting back.”

As he learned what pausing the movie meant, we didn’t need to say anything (only praised when he did what was expected) because he moved back on his own. Lia also reiterated how important it is to…

focus more on his positive behaviors

…like praising when he does move away from the t.v. [ABA isn’t wrong, but I do think it’s taken too far], and when done in such a way, it’s taking childhood away from so many children.

The article, Would You Accept This Behavior Towards a Non-Autistic Child takes a look at how we treat those on the Spectrum. I highly suggest reading it and taking a look at how your child is treated at school, in your home, and in therapy. Ask yourself that question:

Would you accept this behavior towards a non-autistic child?

Next week I’ll be sharing some professionals thoughts on ABA as well as perspectives from adults on the spectrum and a mom who’s had a magnitude of success with her son (he’s fifteen, in college, and on track for a Nobel Prize) and hundreds of other kids with Autism whom she’s helped share their voice. Here is that article: more perspectives on Applied Behavior Analysis

*Jeremiah is 4 1/2 and nonverbal.

*Fidgets – sensory type tools used to calm a person. http://www.developmental-delay.com defines fidgets as tools that have
-Interesting tactile composition such as squeezable or spiky massagers
-Heaviness or pliability of the product
-Movement opportunities it provides our hands (can the child squeeze it?)
-Does Not make any noise, so it not a distraction to others
-Several different ones that are small enough to put in pockets”

 

*First/Then is simply having the child do an activity, and afterwards they get to do something they want to do. It can also be used to notify a child of an upcoming event. “First we are getting our pajamas on, then we will read a book.” Or if your child needs to leave an activity to do something they dislike, you can say, “First we’re going to wash hands, then you can play with the iPad.” Once learned, this phrase makes transitions easier, and works best if used in all their environments.

*Names changed to protect privacy.
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the board’s decision overrides (Autism/special needs)

boardsdecision

In January we were notified that Jeremiah would be moving up to Kindergarten in the next school year. We’ve been so happy with his progress in his current preschool (he’s now on his second year), that we were in trepidation of him moving forward. His birthday fell twelve days short of the cutoff for entrance to Kindergarten (meaning he would be one of the youngest kids in his class), AND he has Autism, which means he’s developmentally delayed. His teacher, who we greatly respect, had the same fears we did, in fact she said those fears kept her up at night. (Jeremiah has a way of pulling at people’s heartstrings.)

We are all for inlcusion, but Jeremiah isn’t ready for Kindergarten, and we know if he had another year in his preschool class, his success would be much better.

Reasons why Jeremiah isn’t ready for Kindergarten:

  • He doesn’t interact or play with his peers. He’s come a long way this year and is noticing his friends, which is awesome, but play/social interaction is a foundation piece for his future that he hasn’t developed yet.
  • He’s not able to sit still. I’ve been in the classroom he’ll be moving into and the teacher expects a lot, which is great for kids who are neurotypical, but difficult for children like Jeremiah. I’ve volunteered in my daughter’s Kindergarten class, they read quietly for twenty minutes, then they move to circle time where the teacher reads to them, then comes quiet writing workshop. Yikes! That’s at least an hour that I’m not sure what Jeremiah will do, and the class is only three hours long.
  • He’s learning more of what a two-year-old might be, versus a Kindergartener.

So, we had some concerns, plus he’d be one of the youngest kids in his class. We asked the preschool director, Karla*, to keep him in preschool another year. When Justin first spoke with her to discuss the situation, Karla said in a very motherly tone, “Many parents are concerned when their children go into Kindergarten.” Justin assured her this isn’t about our “baby” moving into Kindergarten, it is expressly the concerns I listed above, PLUS the worries we have for the teacher.

Karla said that ultimately the decision would be made by the team who works with Jeremiah – the teacher and three therapists.

We had also met with the school principal, Ellen*, and the psychologist, Jackie* (both have observed Jeremiah in his classroom) and we thought they were in agreement with us. But when Karla called Justin earlier this month, she said the final decision was up to her and the principal, she was very abrasive and said the decision was…

NO.

What? Karla’s never observed Jeremiah, yet she was making this decision which would affect the rest of his life. We also thought it odd that the principal had sided with her, because we weren’t getting that vibe.

“Don’t allow educators who’ve never observed your child make monumental decisions for them.”

Karla said there were three criteria that determine retention, and Jeremiah has to meet two of the three. They are: 1) The child’s birthday falls within ten days of the cutoff. 2) The child is ONLY socially or emotionally delayed. 3) The child has only attended one year of preschool.

Jeremiah’s birthday falls so close to #1 that Karla was willing to let that one slide (all sarcasm included in that statement). He didn’t meet #3 because this is his second year of preschool.

And about #2. Jeremiah didn’t meet that one because he’s more than socially or emotionally delayed. Basically it was explained to us, in Karla’s opinion (yes, the woman who has NEVER met my son), if Jeremiah were to attend preschool one more year he wouldn’t be socially and emotionally caught up. This criteria is set up for those who they have the “hope” of developing in those areas.

Not cool.

So, in the mind of the preschool director, the decision was final. However, she didn’t know that in our minds it wasn’t. I began talking with therapists, and trying to get ahold of his doctor and the psychologist who diagnosed him. I was gathering letters and information on the importance of him repeating preschool one more year, to set him up for success in the future. My gathering wasn’t going well, because I couldn’t get a phone consult with his doctor, and the psychologist is unreachable in the time I have to make phone calls (without a little guy jumping through the house screaming).

jerlove

But I had a big surprise (such wonderful news that I bawled when I read it) last Wednesday when I opened my emails. There was an email from Jeremiah’s case manager (yes, there are several people involved). She said the school board had changed the entrance birthday/age for Kindergarten enrollment. They moved it back two months, so this means Jeremiah won’t be five by the selected date,

so he can’t move on to Kindergarten!

In the end, the school board made the decision for us. Jeremiah will attend preschool another year. Wooohooo! Everyone who was in support of him staying in preschool, which is everyone minus two, is laughing at the situation. It’s funny how some were sticking their heels in, staunchly against Jeremiah staying another year, and behold the decision was made FOR them, and they were taken out of the equation. As one person involved said, “I call this sweet justice.”

We spoke with the principal, and she said she had no part in the decision to move Jeremiah into Kindergarten. I don’t know what Karla’s problem is, but it seems she can’t get her facts straight.

God is watching over these kids, He shows His protection over them continually; new programs popping up, and our kids are the first to go through, new services becoming available, beginning with these two, and BIG decisions made by school boards that affect Jeremiah. It’s been amazing to watch.

*Names have been changed to protect privacy.

Some other posts that may be of interest:
Out of My Mind – including special needs
what is inclusion?

what is inclusion? (special needs)

inclusion

I wish more people knew what inclusion is and the benefits of integrating special needs children in the mainstream classroom. When I share with others that our son attends the ONLY inclusive school in our district, they stare at me, having no idea what I mean. Information exists elsewhere on this topic, so I will share my opinion and experience, as well as share information from other resources.

So what is inclusion?

Inclusion is when children with special needs join mainstream classrooms for the majority of their day. This means children with mild to significant needs are in the same classroom with their peers. Each individuals assignments may look different when incorporating inclusion, as a child with moderate needs may not be able to complete the same task as a neurotypical child (one without a disorder, disABILITY, or developmental delay).

What does this look like for children with more significant needs?

This dynamic functions best when kids with more significant needs have a full time aid. Because of stress levels, social struggles, sensory needs, etc., the child may need to take occasional breaks from the classroom setting, which would be guided by the aid or Special Needs facilitator in the school.

More information on what inclusion is can be found at Kids Together.

Kids Together defines inclusion differently in some aspects. It really depends on where each school is in their readiness for inclusion. Our school does well with inclusion, but is not able to support a child’s every need within the classroom. When there is a child who needs intense sensory input, they’re not able to meet that need within the general classroom. Whereas, in the definition given by Kids Together, it says, “Supports follow the students, the students don’t go somewhere to get them.”

Tim Villegas of www.friendshipcircle.org says, “Inclusion is going to look different depending on each school and student. That is why I think it is helpful to see it as a framework as opposed to a one-size-fits all system.” Progress is progress, and we must work with what we have and move forward.

For a child who thrives on routine and lack of it can create turmoil within them, I believe the model of inclusion must be amended. For example, for holiday parties, assemblies, and times when the teacher is absent, one might consider creating an alternative for the child.

I agree with inclusion, but there needs to be leeway when the classroom dynamics are altered.

“Inclusion is part of a much larger picture than just placement in the regular class inclusion2within school. It is being included in life and participating using one’s abilities in day to day activities as a member of the community. Inclusion is being a part of what everyone else is, being welcomed and embraced as a member who belongs. Inclusion can occur in schools, churches, playgrounds, work and in recreation.” ~ Kids Together, Inc.

At this time in my journey with Autism, I’m in support of inclusion. I have two experiences with my son and inclusive classrooms. Jeremiah attended a mainstream classroom for two years, the teacher and aides did not have the training necessary to help Jeremiah appropriately. Because of their lack of knowledge and their unwillingness to learn about Autism, he was stuck in front of a television most of the morning.

In August 2012 he began attending an inclusive classroom that is part of our school district, and is connected to a primary school that’s inclusive. He thrived immediately. The difference? Teachers and aides who were well-informed about Autism, who were able to read his cues, and were willing to work with him where he was. He’s made great progress in his preschool (now in his second year – and we are VERY sad to see it going by so quickly). We also work with the teachers consistently, sharing his progress or regression at home, what he is saying (only a word or two), playing with, or how he’s communicating.

This helps us all meet Jeremiah where he’s at and encourage him to do more. 

Here’s a post from Special Needs Resource, which lists 10 Examples of Inclusion: For Those Who Need to See It to Believe It

Senminefield holds another opinion, he feels that inclusion doesn’t work for children with Autism Spectrum Disorder. Here’s what he has to say in Special School Vs. Mainstream: Pros & Cons. 

In Senminefield’s post, he discusses the teachers lack of knowledge pertaining to Autism. He does say that it’s not their fault; however, it’s my opinion that  parents should help educate teachers and staff on how to help our Autistic children. If we want inclusion, we can’t complain about every instance that goes awry, we need to work through them with educators to provide them with knowledge of our children they may not have.

Some other great resources for learning about and implementing inclusion are Think Inclusive and The Inclusive Church (for those who are interested in having inclusion work for church and Sunday School classrooms).

What are your experiences with inclusion? Do you think it would work for your child?

Some other posts that may be of interest:
Out of My Mind – including special needs
Great Special Ed Teachers = Priceless
the board’s decision overrides 

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