My Body's Struggle

I am autistic and have dyspraxia. That means I have problems making my body move the way I want it to. This is why I have trouble speaking, writing, and using my gross motor skills to interact with others. Having dyspraxia is the biggest problem for me. It is what confuses people most and makes me feel the most isolated. 

My body’s behavior is a very poor reflection of who I am on the inside. I am seemingly a lost child unaware of what is going on around me.  I come across as not being smart or capable. I mean to be more helpful but I am barely able to make myself stay regulated to do much without being beckoned to stim or give into an impulse to relieve stress. My body is a saboteur to my mind’s true intentions. 

If my body were in control I would make it sit attentively in class. I would take the most interesting classes which for me are math and social studies. I would be able to write complex equations by myself and be able to solve them. I would want to learn to play the piano like Mozart my favorite composer. I would try out for the soccer team and have lots of friends. I would be very active in volunteering to help my school be a place that includes everyone because I know what it is like to be an outsider. 

Making my body cooperate is my life long struggle. I work on it by exercising to make stronger neural connections. I continue Rapid Prompting Method to build my communication skills with new people and get more independent. I have hope I will improve in my body. Rehearsing the future me in my mind of how I can be gives me the power to work hard and not give up.

Copyright 2019 Philip Reyes.  All rights reserved.

My Disobedient Body

My body is like a very disobedient toddler. My mind is like an impatient mother, wanting her unruly child to do what she says. Tonight my dad asked me to set the table for dinner. My mind knows where each person sits. I give myself the order to make plates go to each person. I plan to carry out the order from dad. However, my feeble body balks at this order. It wants to put all the plates on one end of the table and the cups on the other end. I end up looking like an idiot who can’t understand the concept that everyone is supposed to get their own place setting. I want my body disciplined to follow the rules. How do I get my body to cooperate? This is my biggest struggle.

Copyright 2017 Philip Reyes.  All rights reserved.

On Occupational Therapy

AM writes:

I have a question.  I am an OT.  I work with several young ones like yourself. I have talked to parents about RPM, but they continue on a different path.  What can I do within my treatment session that will benefit these kiddos the best? Thank you in advance for your answer.

To AM,

I am day-to-day looking for solutions to my problem of finding my body in space. I want to act appropriately. I am naturally an awkward person. I move when I am supposed to be still. I freeze when I am supposed to move. I can’t get my body to move right. I have brain-body disconnect. It is meaningful when my brain and body cooperate.

I would like an OT to day-to-day come up with a plan for me. I want good skills that help me do things around the house and at school. I want to be able to pick out my own clothes and dress myself. I want people to think I am helpful. I pay attention to another person who needs help. I want my body to be motivated to help. My mind wishes to help. But my body rebels like a naughty child. I may want to be a man but my manner is like a child. Bearing my body is the hardest thing. I love my autistic thoughts but not my motor problems.

An OT can help by understanding our sensory needs. I cannot feel my body in space. I think an OT can make me learn to find my body in space by exercise, more weight training, and practicing muscle memory. Bike riding was learned this way. Bike riding is now my favorite thing to do. I lament very useless things done in OT. No benefit came to me from swinging or being brushed on my skin. It was a waste of time. I am glad I don’t have to do that anymore. I want to learn important skills with an OT. Reading a book on my own, writing words, drawing pictures, typing independently, and managing my self care are things an OT ought to work on to help me.

Philip

Starting RPM and the Problem of Automatic Movement

TF asks:

Is it normal for there to be a lot of frustration when starting RPM?  My son tried to spell something on the board tonight but I could only get some of it out of him.  He said, "no one ever noticed."  Now he's in bed screaming.  I keep trying to comfort him but it's just not working.

To TF,

I want to talk about starting RPM. When I first started, I got frustrated because I wanted to be able to do it well right away. But I was unable to get my body to cooperate. I talked the answers in my head. But my very carefully made answers could not be expressed. I had to practice every day. I tended to go to an automatic motion. I went to make a motion to spell my answer but my finger would get distracted. I needed a prompt to get me out of my automatic responses. I am truthfully trying to do my best to get my words out without getting distracted. It is hard for me. I can’t get myself out of my automatic rhythms sometimes. My body can feel like it has a mind that is not in control of it. I may know exactly how I want to move, but my body has a set of commands it follows that I did not order. I am coaching myself constantly to carry out the right instructions. I am daily fighting the impulses that make my body automatically move without the planning from my thinking mind. It is very tiring and a part of my life always. No one can fully understand unless they are autistic too.

Philip

Progressing Towards Independence

By Philip

I am progressing towards independence. Learning RPM has changed my life. I am never going back to my old life. I was making no progress with ABA. I landed myself in a place where no one saw my potential. I was babysat all day. I left that place to go to a regular school where I am treated like the smart boy I am. Pleasant people and interesting lessons make my days meaningful. Lasting progress now happens in my life. Life is still hard. I still cannot communicate quickly or independently. But I make progress slowly but surely. Patiently I work towards independence. Now I am meaning to write without a person holding my keyboard. I practice every night. I see me targeting the letters better. I love seeing myself get more independent. I am also becoming independent in getting myself ready in the morning. Practicing every day helps me make progress.

Lisa’s note:  Now that Philip is 13, we are really working on helping Philip become more independent.  This is very challenging because he has poor control over his body.  In technical terms, Philip shows elements of dyspraxia, the difficulty in carrying out motor plans because the neural communication between the brain and muscles is impaired.  To be clear, Philip’s brain works just fine.  He knows what he is supposed to do.  But, as Philip has described many times, his body has a hard time obeying his brain.  There is a kind of disconnect.  But this doesn’t mean hope is lost.  I have watched in wonder as Philip has been able to learn new skills these past few years.  I know his communication has been an integral part of his success.  It has given him confidence, connection with others, and a way to process his thoughts and feelings.  Overcoming anxiety has been a big barrier to trying new things, such as bike riding and ice skating, in the past.  Since being able to communicate, he has been able to find the courage to not only try, but succeed.  Enrolling him in programs specifically designed to teach kids with special needs has been so beneficial.  I believe training the muscle memory has been vital in learning bike riding and skating.  I know this kind of practice will help Philip at home too.  We have structured Philip’s days around routines that help him learn the repetitive skills of daily living while still having novelty in learning and dealing with new problems.  We have added extra time in the morning so Philip can get himself ready with less of my assistance, but still with supervision and verbal prompting.  He now does part of his homework with the keyboard on the table, typing independently.  He and his siblings also do chores in the evening.  Philip’s usual chores, done on a rotating schedule, are picking up the family room, bringing his laundry down, taking out the trash, and unloading the dishwasher and sorting the silverware, plates, and bowls.  Everything moves slower, but it is worth it because progress is happening.  It makes me think of my favorite character from Aesop’s fables:  the Tortoise from the Tortoise and the Hare.  As the moral of the story goes, “Slow and steady wins the race.”       

  Philip getting ready to perform at the SABAH ice skating show  

Autistics Deserve a Chance and a Change of Beautiful Heart

By Graciela

Gentle autistics have many feelings talked about in front of them as if they are not present. This must be recognized and stopped. Understanding the autistic experience is hard. Let me try to spell it our for you. I am happy to educate.

First thing you need to know is that autism is not a cognitive disorder. It is a motor based disorder. As a result we can fully understand everything that is being said around us or in front of us. This ought to be burned into everyone’s minds that cares for us. Understanding this one rule really would make a huge difference to our personal opinion of ourselves.

The next thing that must be understood is that life is harder for autistics because they are sensitive to many things that do not effect others as much. For example I am always sensitive to food and am always trying to find a food that does not upset my sensitive stomach. Another thing that is hard for me is the kind of love that is fake. I am able to see through each person’s facade to their core underneath. Have you ever been angry at someone and argued with that person? Have you ever decided to fake the resolution in order to get out of the argument? This is kind of how I feel around people who act like they love me and really do not. This creates really forced relationships that make me stressed to the max.

I understand each and every day that feelings get hurt but autistics have a harder, tougher time moving on. Life is hard for all of us but it is harder for the autistic who feels things so deeply. Getting massively overwhelmed is not an easy thing to deal with. People need to understand that we are not weird but our bodies are under a lot of stress and are hard to control because of the motor disorder.

Beautiful people want to learn more and are ready to get educated but always these people do not insist on learning from the autistic experts and often become miseducated and all confused. Attention must be put on the autistic experience in order for amazing results to happen.

I have formed many opinions about my life and am fortunate to have access to a means of communication that allows me to express myself. I also am always putting my opinions in practice with those who try to understand and love me for who I am. Maybe you can try to love an autistic too. Strength and courage is necessary to get many feelings of rejection put away forever. With more love and support in our lives we can have beautiful memories to keep when things are rough. Learning to love is a gift from God. Put it to good use. Making all of the autistics accepted members of society will make the world a better place for all to live.

Feelings people have currently towards autistics are not acceptable because people are not understanding. Life is too short not to enjoy it. So I am doing my part to raise awareness and promote acceptance for all autistics. Keep analytics out of the discussion and just listen to your heart.

Autism and autistics are here to stay. Putting the effort into education that hones the strengths of autistics is kind of people’s missing link. With better education we can play a bigger role in the world. We are smart and amazing individuals with a lot to offer. Give us a chance to save the world from bias and judgment. 

Graciela Lotharius is an autistic 12 year-old RPMer who enjoys daring others to listen to her powerful words. She is a lively girl who likes to learn and who feels strongly about finding a way to go to a school that will somehow have the ability to dare to keep up with her mind while also embracing her hard to control body. You can find out more about her at her blog Dare To Listen.