Assurance of Things Hoped for, Evidence of Things Not Seen
By Brooke Potthast
It has been almost one year since our son James had the opportunity to use the RPM method of communication with Soma Mukhopadhyay. James is verbal but not conversational, and his speech is best described as being very “unreliable” as well as hard to understand. James has gone from almost no real communication to total communication in 6 months.
Needless to say it has changed everything for him and for us. I tell people it is bigger than marriage, childbirth or winning the lottery. It seems as though every day we learn something really big about James and his heart and mind.
When I first realized that a lot of what we thought about James was wrong, I called Dan Olmsted. Over coffee I told him, “I think mercury toxicity creates silent geniuses.” I’ve always been certain that thimerosal and my dental amalgams caused James’ regressive autism and I am now fairly certain that a huge percentage of children or young adults with autism are not intellectually disabled, not even learning disabled, but so severely sensory-motor disabled they can’t show us.
We thought James, who is 14, was around 2nd grade in his academic understanding and that was spotty. When we decided to homeschool and let him use the letter board fo spelling answers, he was able to do 9th grade work in just a few months. We thought he couldn’t add and he easily does algebra and recently asked to learn about cube roots. I am not writing this out of pride for our son. I am telling you this because I don’t think he is the exception, I think he is the rule. In the last year I have seen this over and over again in teens and children who are in life skills classes and who educators and doctors have said are cognitively disabled. When given the opportunity to use RPM or something like it they show us that they have not just been taking it all in, but assimilating it in a typical and functional manner. One day early on our homeschool teachers gave James a vocabulary test. They gave the word “gullible” he spelled “easily fooled." Those examples are endless.
But the most remarkable thing we have learned about James and what I wanted to share in this piece is that despite having suffered in ways unimaginable he (and I think so many of his peers) has great hope for the world and for forgiveness and understanding. It is hard to even put into words what life would be like trapped in your body. Thinking and understanding just like everyone else but not being able to join in a conversation, tell a joke, verbally express love or anger or sadness. To not have friends, have education be limited; the list is long and painful.
But here is a “legend” written by James this week. When I read it my first thought was to put it on Age of Autism because I thought it summarized so much of what this community experiences and it gives us some hope. James said in another conversation that he remains hopeful and I’d like to think we all can. The background is that he is doing Medieval literature in school right now and they have read Beowulf, Sword in the Stone, etc. After discussing (on the letter board) the Sword in the Stone he was given this assignment: (his writing is in Caps)
Why was it so hard for people to believe that Arthur pulled the sword from the stone?
BECAUSE PEOPLE CANNOT BELIEVE THINGS THAT THEY DONT UNDERSTAND.
Create a modern day legend about something that may be beyond the belief of many people.
THERE WAS A BOY WHO SEEMED LIKE HE WAS UNREMARKABLE. NO ONE THOUGHT HE WAS CAPABLE OF MUCH COMPLEXITY. HE HAD EVERYONE FOOLED. NOT ONLY WAS HE SMART, HE WAS MAGICAL. HE WANTED TO BE CONSIDERED SPECIAL WITHOUT HAVING TO RESORT TO USING HIS POWERS TO CONVINCE PEOPLE. HE WAS FRUSTRATED BECAUSE MOST PEOPLE COULD NOT BELIEVE THERE WAS MORE THAN WHAT THEY COULD SEE ON THE SURFACE. ONLY HIS FAMILY BELIEVED HIS TALENTS. HIS MOTHER BELIEVED HE SHOULD USE HIS MAGIC TO OPEN THE EYES OF THE DOUBTERS. THE BOY CAST A FAITH SPELL THAT WIPED ALL THE DOUBT FROM THE EYES OF THE NONBELIEVERS.
SUDDENLY, THEY COULD SEE THE BOY AND OTHERS LIKE HIM FOR WHAT THEY REALLY ARE. THEY WERE SHOCKED TO FIND SO MANY KIDS AND ADULTS THEY HAD REGARDED AS UNREMARKABLE AND EVEN SOMETIMES WORTHLESS. THE PEOPLE WEPT WHEN THEY REALIZED HOW CRUEL THEY HAD BEEN TO THESE SPECIAL PEOPLE. THEY BEGGED FOR FORGIVENESS. SINCE THEY WERE SPECIAL PEOPLE WITH ENORMOUS HEARTS THEY FORGAVE ALL WHO DOUBTED THEM. ALL THE PEOPLE COULD NOW LIVE TOGETHER IN RESPECTFUL HARMONY. THE SPECIAL PEOPLE WERE INVITED TO STUDY AND LEARN WITH THE OTHERS. SOME WERE EVEN INVITED TO TEACH. THE WORLD BECAME A HAPPIER PLACE.
Brooke Potthast lives in Arlington, Virginia ,with her family and is recording much of what James is writing on their blog ReturningJames.com.
The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.
Martha and Brooke WE were at ACE RPM program in Wisconsin and discussed with them issues that Martha brought up in her comments. Martha if you call them at 920 884-2990 they can assist you in finding funding for RPM.
Posted by: Bob Hamlin | March 31, 2014 at 07:43 AM
We have found the same thing to be true of our son. At 17 he could barely communicate and was doing kindergarten and first grade work. After reading Soma's first book we were fortunate to bring him to her in New York City for many sessions through the AEA, Academy of Excellence for Autism www.aea-soma.org Now he is communicating and doing 9th grade school work. After seeing what my son could do with Soma I took her Introduction to RPM course to learn how to do it myself. RPM takes practice and effort on the part of the parent and student. It is not something you can just go to a practitioner and expect your child to automatically start typing at home and for everyone else. The skill does not generalize automatically. My son uses a letter board to spell. He wants to be able to type independently. It is a lot of work for him to do this. It is very hard for him to initiate actions. The thoughts and words are all inside him, but it is great effort for him to express through pointing and typing. It is a gradual progression.
Posted by: Theresa | March 28, 2014 at 09:56 AM
This post is beautiful and so full of truth! James, continue typing! You have great things to say!
Posted by: AutismGoAway | March 26, 2014 at 09:07 PM
Reminds me of Ido, who writes wonderfully about his experiences with the kind of autism which mostly involves motor control and sensory overload issues, with an intact mind that was overlooked for years until he learned to communicate by pointing at letters and then by typing.
http://idoinautismland.blogspot.com
Posted by: Twyla | March 26, 2014 at 11:25 AM
Beautifully written, Brooke and James.
"THE SPECIAL PEOPLE WERE INVITED TO STUDY AND LEARN WITH THE OTHERS. SOME WERE EVEN INVITED TO TEACH."
I was amazed to see this on this very day. You see, I'm involved with nonPareil Institute in Texas, a nonprofit which works with adults with ASD. And today, our CEO and 2 of our adults with ASD are in Portland, Oregon, where they are putting on a gaming computer camp for young adults with ASD. For you see, these adults with ASD in Texas did study and learn...and today, they ARE teaching. James, it isn't a "legend". As we all work together to help and encourage people with autism, we can make your "legend" a "reality".
Posted by: Vicki Hill | March 25, 2014 at 09:18 PM
Whoops I meant to say "GOOD" special Ed programs, not "god" special Ed programs...darn auto correct! Sorry!
Angie
Posted by: Angie | March 25, 2014 at 08:53 PM
Brooke,
Hurray for James and your family! My daughter, Elizabeth, is also a student who learned to communicate using RPM when she was 6 years old. Elizabeth is non-verbal and was diagnosed by Yale as "low-functioning" but I knew she was "in there." Today, Elizabeth is 16 years old and attends honors classes at our local public high school from home with a VGo robot in the classroom (straight A student). You might want to consider this for James. Elizabeth and I co-wrote a book, I Am in Here, which has 70+ of her poems telling about life in a "silent cage" as well as her closeness to God and the joy she feels in nature. I so agree with you that our children are intelligent and hope that all our efforts can help change the way the world sees autism. Our website www.IAmInHereBook.com has lots of free resources for parents for both biomedical and educational interventions. Also, Elizabeth's older brother, Charles, has autism and he is a junior, honor roll student. With the right supports, our children can be successful!
Blessings, Ginnie
Posted by: Ginnie Breen | March 25, 2014 at 08:37 PM
Martha, don't quote me on this but I think Soma and her team are trying to get more people trained in RPM so it will be more available to everyone. Where do you live? I think this is so profound that more folks will work to get it where it is needed. I know how frustrating it is to not be able to get help son because of money. It just shouldn't be that way. If you can email me from my blog address maybe I can brainstorm with you about RPM for your son.
Posted by: Brooke Potthast | March 25, 2014 at 08:35 PM
What a fan-freakin-tastic article!
We did a mini session in Green Bay as we'll and are trying to save every penny to get our son Alex there more, for sure.
Our boys have been between public virtual schools and homeschooling over the past few years, they are now, age wise, in 4th and 5th grades, and Alex is our non verbal guy in 4th grade....even our son in 5th grade who IS verbal has always been treated as intellectually disabled/slow/etc by "god" special ed programs..HA!
If I did have them home and have the mother instinct I am SURE THEY WOULD BE still having our non verbal 4 the grader count from 1-10 and work on abc's....but now they are both grade level reading, and almost grade level math....you just. Have to make that connection and get their special interests and PAY ATTENTION and give them RESPECT and they thrive!!!
Anyway, over the past few weeks I have been researching how to arrange/open a local school, charter or private/however I can , because there are TONS of our kids trapped...nonverbal AND verbal too!! We need SCHOOL like this for our kids because they Need and deserve the respect and education others get....
Anyone here have any info/experience on starting a school, know anyone who has?
Thoughts?
Angie
Proud. Mom to Ethan, Alex, Megan, and Sega the wonder service dog
Posted by: Angie | March 25, 2014 at 06:39 PM
Hi Brooke, thank you for such a wonderful article! Your sons story could have been our daughter Ann's story. We went to see Ericka Anderson a protégé of Soma's in Green Bay Wisconsin. Our daughter Ann is non verbal and at the time was age 18. What happen to here with RPM we feel was a miracle! We both work with her everyday and travel from the Chicago area to Green Bay once a month for refresher courses. Ann participates in a group discussion using her letter board in Green Bay with other individual that are non verbal. She now has had religious discussions with our minister that he feels are very deep and philosophical. She spells better than her dad. She has started her own blog (http://www. opinionslearnedfromrpmandautism.com.) She feels her purpose is life is to show that nonverbal individuals with Autism are intelligent.
Posted by: Bob Hamlin | March 25, 2014 at 05:40 PM
I know my 40 year old son with odd ways of communicating has a lot more possibilities to give but I am past being able to come up with extra money for anything. This is the case with many adults who have aged out into nothing to help them with their possibilities. I find that anything I want to access in the community such as speech therapy is only an option for children and therapists refuse to work with adults and take the insurance but want cash. Is this going to be the case for many of you when your child ages out? I would love to go to Soma but with my fixed income then I am stopped. I tried everything when he was younger...all the options being explored then...all the studies...all the therapies...and then he aged out of everything!
Posted by: Martha Moyer | March 25, 2014 at 05:14 PM
Teresa! Meg will be communicating more and more, I am sure of it. It is in there! I can't wait to hear more about it. Do you have someone who can do it regularly with her as well as you?
I found that was the difference for us. All my best, Brooke
Posted by: Brooke Potthast | March 25, 2014 at 04:06 PM
"I’ve always been certain that thimerosal and my dental amalgams caused James’ regressive autism and I am now fairly certain that a huge percentage of children or young adults with autism are not intellectually disabled, not even learning disabled, but so severely sensory-motor disabled they can’t show us."
I've had thirteen years to learn about autism (my son is fourteen now too) and this is exactly how I sum it up, so beautifully said by you. My son's behaviors are just a distraction from the young adult he really is. I try to remember this and tell him how awesome he is.
Thank you so much for the megadose of hope, James and Brooke!
Posted by: Amber | March 25, 2014 at 03:23 PM
Kent,
Thank you! I have followed you and your family all these years and am so impressed with your new book. Perhaps your daughter would find RPM helpful? All the best, Brooke
Posted by: Brooke Potthast | March 25, 2014 at 03:09 PM
How outstanding! Meg and I will be driving 7 hours on Friday to attend her 5th RPM. Thank you, Brooke and James for such honest and hopeful news.
Posted by: Teresa Conrick | March 25, 2014 at 12:41 PM
I think this is one of the most beautiful articles I have ever read!
Posted by: Kent Heckenlively | March 25, 2014 at 11:51 AM
Welcome, Jamesfucius!
Posted by: Mary W Maxwell, PhD, LLB | March 25, 2014 at 10:11 AM