Sunday, July 26, 2015

Celebrating 25 Years of the Americans with Disabilities Act

Today Philip and I talked about the 25th anniversary of the Americans with Disabilities Act (ADA), a monumental legislation for people with disabilities. "Nothing about us, without us!" has been the rallying cry of the Disability Rights movement.  Much like the Civil Rights movement of the 1960s tackled the issue of racism, the ADA's goal has been to reverse the attitude of ableism, the belief that disability is an inferior state of personhood.  The ADA demands we acknowledge disabled citizens as having the same rights as non-disabled people to access employment, transportation, housing, and accommodations.  The Individuals with Disabilities Education Act (IDEA) was also revised and passed in 1990 to ensure all students with disabilities the right to a Free Appropriate Public Education (FAPE), with an Individualized Education Program (IEP), in a Least Restrictive Environment (LRE).  There have been great strides made in making public facilities accessible, but much work still needs to be done, especially in employment and education.  -Lisa

By Philip (written 7/25/15)

Talking about the Americans with Disabilities Act (ADA) makes me glad I am an American living today. Tomorrow is the 25th anniversary of the ADA. I am going to Canalside tomorrow to celebrate. Would you like to come? America is a great country to protect the rights of all citizens.

I think that we have come a long way since 1990 but we still have a way to go. I am lucky I am not institutionalized. I am able to go to regular school with accommodations because of this law and IDEA (Individuals with Disabilities Education Act). In my school I have access to learning like everyone else. I am so glad my country makes laws to cancel the discrimination we once faced. I think the IDEA law attaches people to society more by allowing kids like me an education with their peers. But as an Autistic, I still see room for improvement. My friends who are nonverbal or can't communicate well are still mostly segregated from mainstream schools. I want to change that. I got the chance to leave special school because I learned RPM (Rapid Prompting Method) and how to communicate. I know many kids can learn like me. They just need the opportunity to be taught RPM. People in education should try what works for many of us who can't express ourselves otherwise. I hope we can continue to make progress. ADA makes it possible. 

President Bush signing the ADA

Saturday, July 25, 2015

Answers to Questions About School

A teacher writes:

Hi Philip! I look forward to all of your posts and want you to know how interested I am in learning from you. I work with kids who are autistic, mostly "high functioning"-Asperger's. I feel like I could sit with you and ask a million questions but I will limit it to those that are most concerning to me.

1.) Many of the kids I work with are defiant at times. They do not want to do their school work even though they are capable. Sometimes this causes teachers and aides to become frustrated and feel the student is lazy and stubborn. How can I help educate teachers and aides on how to deal with this? How do I help the student to comply with school expectations without a meltdown?

2.) Do you believe it is best for an autistic student to have the same expectations as the other students in the class or is it best to modify? Ie: reduced number of problems to complete, use of a calculator permitted instead of having to do math in your head, use of a scribe instead of taking notes, not having to do "abstract art" assignments. I would love to hear your input on this. I know from my students many things challenge them but they can not put into words a way to adequately explain this to teachers. Help!

By Philip

I want to explain about performance at school.  Autism presents many challenges. Anxiety is the biggest one. Other challenges are sensory difficulties like crowds and noisy halls, my movement challenges, and inability to communicate quickly and efficiently. I think kids like me seem defiant because they get anxious about not being able to meet people's expectations. Manners are hard to follow because our bodies do not often follow directions. I love to do what is right. Most of us do. Meltdowns occur mostly from being unable to meet expectations and feeling made to blame for it because of poor character. You can tell your fellow teachers and aides that we mean peace but our capability is most affected by our anxiety.  Sometimes anxiety stops us by telling ourselves we can't do it. We freeze. Patience masters more problem behavior than yelling. You can help students meet expectations by setting goals that are challenging and interesting. How to make good goals is to solve the puzzle about what makes each of us care to learn. People are all different. For example, I am motivated to learn about nature, good biographies, and God. My friend Max is interested in drawing and bowling. We can learn many things from our interests. I do most well answering questions about interesting things. Another thing I need are patient teachers. They can help get my thoughts out of my head by encouraging me to type. I have many thoughts stuck in my mind.  I need some help in getting them out. I need someone especially understanding of my challenges and needs. When a person believes I am intelligent and trying my best, I can do my work best. I will have fewer meltdowns if you don't yell, raise your voice, or accuse me of being defiant or lazy. Pace my day with breaks because I get tired easily. I need to recharge often by relaxing. I prefer music, rocking in a rocking chair, and leaning on a beanbag. After a short break, I can work again.

I think modifications and accommodations should be allowed for those who can't show success otherwise.  I am unable to keep up with typical kids in showing my work but I am equally able to understand the lessons. I would never finish my assignments on time without accommodations and modifications. Modifications such as assigning me a project I can do rather than abstract art I can't do makes better use of everyone's time. Modifications such as giving me fewer problems can allow me to address people's expectation that I know the material, but not overwhelm me with the amount of time it takes to answer. A scribe allows me to type rather than handwrite on worksheets that I can't do on my own.  Modifications and accommodations are important for my success.

Wednesday, July 15, 2015

AAC Gives Us A Voice

By Philip

LS writes: 
Hi Philip!

My name is LS and I'm the mother to a wonderful 3.5 year old autistic boy who is nonverbal. I have been reading through your blog for a week or so and love learning from you! 8 months ago we discovered Augmentative and alternative communication (AAC) and bought my son the app "Speak for Yourself". He is doing amazingly communicating with it! He has stunned his school staff and they have been inspired to try to incorporate the app with as many other children in his school as possible. I am so proud of him for showing that a 3 year old can use a robust communication device and shouldn't be limited to one with only a few words, as they previously assumed. He is showing the world what we already knew - that he is a very bright boy with a huge desire to share his thoughts, feelings, and sense of humor with everyone around him.

Philip, my question to you is whether you have had any introduction to high-tech AAC or whether you have friends or classmates who use these devices? My son does love letters and has a keyboard built into the app and I am sure he will love typing someday but right now he is able to use motor planning to remember where approximately 600 words are on his device and we are constantly adding more. I am new to the world of communication for nonverbal people and have been eager to see if anyone who uses RPM also uses AAC devices instead of or in addition to a letterboard or keyboard?

Thank you for your time! I hope you have a wonderful day!


Philip writes:

My experience with AAC began when I was 6. I started on Go-Talk. It had only a few icons. It was good for requesting but not much else. Then I got an Alt-Chat. It became my voice at school. However I was not able to communicate with it with my family. They did not know how to use it. I kind of tried but I could not express my thoughts with the pictures. I could only make requests for food. I do best with a keyboard. I am able to express myself best making use of a good vocabulary. I am most happy using letters. The words I spell are what I think. Good communication systems let you say what you really mean. The AAC programs are often geared to me making a practiced response. I have to navigate the pages to find what I am looking for. I can't always find the right picture. It makes it harder to communicate for me. At school, I use Proloquo2go. I use some icons for shortcuts like bathroom and break. I like the combination of icons and text. I am for AAC with a text option. At home I use a paper letterboard or iPad with the Assistive Express app. My app allows me to have an actual voice to what I type.

In making my thoughts known I can be free to live my life how I choose because people can understand me. I am peaceful knowing I am free to really speak my mind. I speak to save my Autistic friends from an established philosophy that is not true. Demeaning treatment of Autistic people must stop.  ABA (Applied Behavioral Analysis) treats us like animals to be trained.  The lack of understanding of autism guides the philosophy that Autistics cannot learn normally or make friends.  Autism is not lack of intelligence or empathy. It is mind-body disconnect and sensory differences. Good accommodations are what is needed. Doing the research on Autistic people who communicate should help professionals in the autism field. I think they should meet us to learn from us.  I want to teach others.

Will you listen?

 High-Tech AAC iPad

Low-Tech AAC Letterboard
(made on computer and laminated on card stock for stability)

Monday, July 13, 2015

Sensory Play and Stims

Ms. M writes: 

Hi Philip,
I have a question. Last night, E found a jar of Nutella. He played with it on the carpet. I know that it is a sensory thing. He also likes mashing bananas and anything creamy. Sometimes I give him a box with beans or rice in it so he can have his sensory play. But why does he like putting things on the carpet? And he keeps on repeating this.

Dear Ms. M,
I like that you are asking me about sensory play. I am a sensory seeker. I am a messy person too. I like to use all my senses to play. Maybe that is why I am most messy. I always want to teach myself through my senses. I am able to learn by using my senses. My manner of play is different than most kids. I am exploring my world by no one's standard. Play makes me happy in my own way so don't think it has to have a purpose. Good play makes all my senses aroused. For example, flowers are pretty to look at. They smell nice. They feel nice twirling in my hands. I even like their taste. I can be messy by leaving bits of flowers all over the house. Mom sometimes gets upset and makes me clean it.

My sensory play can also take me to a place in my mind. I can think more clearly. I am thinking about all the questions I have about life. God really speaks to me. Stimming is like a moat around a castle.  I surround myself with things to keep myself out of danger from sensory bombardment, which make me feel overwhelmed.  I zip along attentively looking for my favorite objects to stim on. Meaningful objects like flowers or my favorite happy wooden tapping stick attract my attention, keeping me from taking in every sensation. I peacefully manage my days this way.

I think your son is stimming on Nutella because it pleases his senses. It feels and smells and tastes good. I am not a fan of creamy textures so I can't answer for him. My advice is to try caring to understand that sensory play is important. You might try making mushy things to play with and let him play where it is allowed. Good luck.


At the Botanical Gardens July 2014

Friday, July 10, 2015

Brain-Body Disconnect and How to Help

Mrs. H. writes: 

Philip, I have an autistic daughter who is now eleven years old.  I know she is intelligent because sometimes she says profound things, but she also does things sometimes which are not smart and are actually quite dangerous though we have been teaching her not to all her life, such as picking up a strangers food or drink and eating or drinking it, running away from us in a crowded place, or running into the street.  She also is very rough with our pets and small children.  I wondered if you had any insight as to why she does these things and how we can understand her and help her understand us when we try to teach her what is safe and not safe for her and others.

To Mrs. H, I also have this happen to me. I am a thinker. My care is for autistic people and making a better world for us. I can relate to your daughter.  I am attracted to certain things like leaves and flowers. I am drawn to their beauty. Part of me wants to be kind to nature but my impulsive mind wants to pick the flowers and twirl them in my hands. I can't seem to stop myself.  I see the flowers and I know I shouldn't pick them but my hands have a mind of their own. I feel badly. My mom has to remind me over and over not to pick the flowers. I can attack my impulse when someone can stop me with a word.  But a mean tone makes me want to do it more. Mean manners toward me hurt my feelings.  My answer to the question of what helps is to maintain calm and stay on top of our whereabouts. I am lacking impulse control to make my body obey my brain. It is frustrating. I am like an amputee with phantom limbs.  I seem to have limbs but I can't feel mine.  I have to see them to know they are there. I can feel them better when I move. My body doesn't feel like it belongs to me but my mind is mine. I am making an effort to make my body more obedient by meaningful activities like chores and bike riding. No person should meaninglessly live life. They should find their talent and master it. My message to parents is give us opportunities to practice our movements in a purposeful way. Help us make plans to use lots of muscle memory by going to the trouble of teaching hobbies and useful skills. Please be patient with us. I am managing my body as best as I can. No one wants to be a nuisance.

Exploring Nature in the Dominican Republic