Tag Archives: ASD

is changing Autism acceptable?

How much can you change Autism, yet keep
Last week in the post, Are Autism Behaviors Annoying, I mentioned a conversation which took place between me and a family member about Autism. You can read that post to see where this relative, Joan, was coming from.

Joan continued from the “…annoying,” comment to telling me about an acquaintance they recently ran into. This acquaintance (someone I also know), Lacy*, has a son, TJ*, who has Autism.

TJ’s mom, Lacy, had chosen to open a store where her son was present during business hours. Lacy cried herself to sleep every night because of the horrible comments the customers made about her son.

She couldn’t handle the criticism.

I understand that it’s so hard to hear comments about your child, or about Autism behaviors in general when your child is on the Spectrum. I haven’t spoken with her about it, so I don’t know if she felt she couldn’t run a business with her son present, or if the comments made her feel bad. Maybe she felt for her son and what he was going through. Whatever her reasons, it’s important that as Autism parents we ask ourselves where our focus lies.

Is our focus in “curing” our child so we can live “normal” lives? Or is our focus to help our child be the happiest they can be? Do we want our child to have different behaviors so we can function in the way we want, or is it because we think it will be best for our child in the end. As I’ve talked to adults on the Spectrum, I’ve learned that so much of what some Autism parents want is not what the Autism person wants.

Forcing them to fit in isn’t necessarily what’s best for them.

I’d already heard about what Lacy had done with her son to help his is our goal in changing Autism to make our life easierAutism, so I said to Joan, “I really don’t want to ‘cure’ Jeremiah’s Autism.” She looked at me as though I was an alien who had fallen from another planet. “Why not??” I answered, “Well, I’ve talked to many adults with Autism, and they like who they are, they don’t want to be changed. And second, I like who Jeremiah is, I feel he’d be very different if his Autism was taken away. His Autism largely makes him who he is.” Joan disagreed and said she thought he’d have the same personality without Autism.

I can see where it would be impossible for someone to see it from my perspective if they aren’t involved in the Autism community, don’t talk to others who are Autistic, and see the positive attributes of Autism. So many want Autism to go away, as I’ll discuss a little later.

Joan explained again what the doctor had done with TJ. He used wires which connected to TJ’s head while TJ held a dog in his lap. A video played on the screen, and anytime his brain made a connection on the “right” pathway, the dog danced in his lap, thus reinforcing that “right” pathway. Here’s my concern I shared with her, “I would have it done on myself before I ever let them do it on Jeremiah.” She gave me an odd look. I added, “I would want to make sure it didn’t hurt him. Shock therapy is being used on Autistic people and it’s not okay, so I would want to make sure it’s not painful or irritating.”

Joan replied, “Oh, it’s perfectly safe.” Well, that’s nice, but I added that there are those who do NOT practice safe and beneficial therapy.

My point of view on Autism is changing drastically, and this is an example of where people go blindly into situations and they forget to contemplate the desires of the Autistic person.

There are two schools of thought on Autism, those who want to “cure” or “fix” it, and those who don’t. Okay, maybe there are a few who fall in the middle. I was more on the side of fixing it until I began immersing myself in the Autism world by living it, studying it, and writing about it, and communicating with Autistic adults. I began to see how truly unique my son is and how much his Autism affects who he is.

Heck, we all have a little Autism in us.

In reading and talking with adult Autistics I hear many of them don’t want their Autism “cured” and some blast groups such as Autism Speaks for their drive to “cure” Autism. They like who they are. As a result of listening to their ideas, I began to see more and more of the qualities Jeremiah possesses.

I’ve also looked at the way Jeremiah has changed me, and I see how it’s drastically formed who his sister is. I feel I’m so different because of him. Yes, doing foster care changed me, but having two children with disorders and disabilities has wrecked my world, in a good way. A life changing way. My perspective of the world has changed, I have more compassion, I know that others may be dealing with underlying issues and therefore exhibit diverse behaviors. Although I have God given sensitivities, I have been made more sensitive to both of my children’s needs, beyond what would have normal for me.

Maybe I’m scared to remove Autism because the child I love so dearly would be different.

I don’t want to change Jeremiah, I adore him. It would be like me wanting to drastically change who someone else is, although I may not like certain aspects of who they are, it wouldn’t be fair for me to change them, and frankly I can’t.

The world needs to change, and Autism is one way to do that.
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*Names have been changed to protect privacy.

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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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what is Autism?

My son, Jeremiah, has Autism. For those of you who don’t know someone with the disorder, or who haven’t looked into what it is, there can be a very narrow perception of what the word “Autism” means. One example of this came when I was introduced to a woman who attends a small group we used to go to. When she asked why we’re no longer part of the group, I responded, “My son has Autism, and we can’t leave him with just anyone.” (Childcare was provided by the host home.) The woman nodded her head like she knew exactly what I meant and said, “Yeah, that routine is really important isn’t it?” (Although this response was narrow-minded, it’s better than the stares I have experienced when I’ve told others about my son’s diagnosis.)

I’m not implying what that woman said was inappropriate or unthoughtful, but I encourage people to become more aware of what Autism is like because it’s becoming more prevalent. If you don’t already, you will eventually have a family member or friend whose child is diagnosed, and the more you can support them, the better.

So you’re aware, every child on the Spectrum can present differently (i.e. one may talk, while another may not. One may have other diagnoses that coincide with Autism, such as Angelmans Syndrome or Fragile X Syndrome. One child may have significant sensory needs, while another may not). There can be similarities between children on the Spectrum, and they can also be very diverse.

When you see a child at an amusement park who can’t wait in line, who screams, flaps his hands, hits himself or others, he may have Autism. Why does a child do these things, and why can’t it just be blamed on bad parenting? Well, first all Autism parents rock, so it can’t be their fault (insert smiley face). Second, there are many reasons why a child with Autism is acting like the boy I mentioned. Here are some possibilities, a little glimpse into their world:

  • Sensory issues. Ahhh, a sizable component of an Autistic’s life is that sensory piece. Sensory stimulation can either become extremely overwhelming; they want to avoid noisy restaurants, bright lights, loud fourth of July bangs, and tickly grass beneath their feet. They can also be sensory seekers (needing sensory input). To calm themselves, they need spinning lights, a swinging motion, they watch how light looks differently when they wave their fingers in front of their face, they may jump or run a lot. They hit, not because they want to hurt someone, but because it feels good when they smack something hard. ~ With this sensory aspect of Autism alone, you can see why a person with the disorder may be uncomfortable and act differently in several scenarios.
  • Processing language and understanding something that’s not concrete is very difficult for a person who has Autism.  Comprehending the non-concrete thinking is nearly impossible for many on the Spectrum.
    So, when a child is told to “wait,” it can be extremely arduous for them to understand what it means. Waiting in line can prove to be a feat that is akin to a neuro-typical person waiting in heavy traffic while rude, obnoxious drivers honk, yell, and throw ugly fingers, or it may be worse for the Autistic to wait in line at the grocery store.

Besides all of these reasons listed in effort to explain the behavior of the boy at the amusement park, there are hundreds of other entities a person with Autism deals with. I will attempt to give an overview of some.

  • Autism is a neurological disorder.
  • Auditory processing can be laborious.
  • They can have difficulty processing auditory and visual stimulation concurrently.
  • Routine is paramount.
  • They can have a hard time relating to others.
  • They can have obsessive behaviors (closing every door that’s open, smelling everything they come in contact with).
  • They may exhibit repetitive behaviors.
  • They can be extremely organized.
  • Some have obsessions with facts.
  • Many experience intense anxiety.
  • They can be easily distracted, some have ADD or ADHD.
  • They may find social situations to be troublesome.

In a BBC video My Autism & Me, starring Rosie King, who has Autism, she explains her Autism. She says she, “…feels words, it’s like they’re slimy or sticky,” and she talks about being really sensitive. She says, “Three out of five people with Autism feel unhappy,” she added, “this is probably because they aren’t getting the help they need.”

Although Autism can be overwhelming at times, my son, Jeremiah is the light of our lives. He has taught us about the fragility, individuality, and uniqueness of the human race. He has made us see the world differently. He has shown us there is a bright, beautiful light to be found in the midst of difficult  circumstances.

This is a very short summary of what Autism looks like. My goal is to provide understanding for those who know someone on the Autism Spectrum, and to support parents of Autistic children. If you would like someone to know more about Autism, you can send them here. I hope this gives you a glimpse of what Autism is.

If you are interested in how to help and support someone with Autism, you can find more on my Contents page, under Autism and Special Needs.

*Remember that no two people with Autism are alike.


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