Em and I returned home Friday night. It was an exhilarating trip, but also an exhausting one. These trips always are. We went from having daily sessions with Soma (you can read more about Emma’s experience working with Soma ‘here‘, ‘here‘ and ‘here‘ and more about Soma and RPM by clicking ‘here‘) that were so incredibly exciting, I could barely take in all that my daughter was writing. Personal, gut wrenchingly, painful insights, loving notes of gratitude to my husband and me that made me weep with joy, but also bittersweet because it is she who has had to put up with us and not the other way around. Her writing displays an almost unfathomable intellect, wisdom beyond her years as well as compassion and patience for all who do not understand her, for those who doubt, for those who do not believe her and all she is capable of, for all who talk down to her, my daughter is a beacon of kindness, forgiveness and compassion.
I do not want people to come away with ideas about saintliness, holiness or angels being dropped down from the heavens and inhabiting her body. I cannot and do not believe in any of that and it dismisses the many challenges and struggles my daughter must endure. Above all else my daughter is a human being, just like you, just like me, very much grounded on this earth and in this life, but she is also exemplary in her ability to see the good in others. It is something I am trying hard to emulate. It is as though the more she writes about what she believes and thinks, the angrier I become. The more enraged I am that we have all believed so easily, without question, the standard assumptions about Autistic people and autism and what that means.
I understand that for many they just cannot believe someone like my child is capable of knowing so much despite having had little formal education, but instead has spent all of her school years segregated in special education schools where she reads below age level literature and is taught the value of nickels, dimes and pennies because it is assumed she does not understand concepts such as money and time. I understand. I do. I was one of those people not so long ago. But now I know otherwise. We are fortunate that her current school is open, willing and interested in learning all she is capable of. They have expressed interest and their intent to support her and to help in any way they can. We will be revising her IEP soon. It will be quite a revision!
Now we are home and I know better than to expect I will be able to pick up where Soma left off. I know better than to think I will be able to sit down with my daughter and accomplish the same level of writing I witnessed this past week. I have to pick up from where I left off before our trip to Texas. This can feel incredibly frustrating and even depressing, but I am learning to not delve too deeply in despair, but rather continue moving forward with the knowledge that I will and already have progressed in my ability to support my daughter better each day so that one day she will be able to converse with me on a similar level as she does with Soma.
This disparity between what Soma is able to do and what those at home then try, has caused a few to claim that therefore Soma’s method is flawed or is cause for suspicion and doubt. What I have come to understand is that my Autistic child is intensely sensitive to her relationships. I cannot sit down and expect to have her write to me as she does with someone who developed this system and who has fine tuned it, perfected it along the way, while working with close to a dozen people every day for over ten years now. It is akin to expecting that I will be able to set a diamond as well as a master jeweler who has been perfecting his craft over the last twenty years or after taking a painting class be able to create something on par with Rembrandt or after taking French 101 go to France and speak fluently. We do not expect any of these things from each other or ourselves, and yet, people decide something like RPM will be easy and simple and anyone will be able to do it instantly and when they cannot, the flaw is in RPM. I have met too many other people who are practicing RPM to see that it is this thinking that is flawed.
Em chose toenail polish for both of us!
Hi Arianne – As you know I do RPM with my son – and II and his 3 other helpers are able to have open conversations (when he is willing)- however I am currently training a new helper. Yes she believes in Chris , but we have had to start at teach/ask and are moving very slowly to single word open communication with her. It really does take time and practise, practise, [practise. You will get there 😉
RPM does require of adults a lot of practice and patience. But it’s well worth the efforts. Maybe that’s why parents who’ve learned it often sound like infomericals when talking of it… because it does work, and perhaps, it sounds to others like it’s too good to be true. But that must not be mistaken for thinking that RPM is easy for the teacher/parent to learn. In fact, I think adults have a much harder time with it than do the students. Emma is lucky to have parents willing to learn it and willing to help others to see the value in helping kids learn how best to learn and how most effectively to communicate.
Thank you so much Linda, it is so worth the effort! It’s changing everything!
Thank you Sue. It is hard for people to understand this when they watch a video of my daughter working with Soma and writing short stories. I think it’s frustrating as they (I have too!) then assume they will be able to just jump in and she will begin writing short stories with them too, and then when it doesn’t happen, the common response is to think there’s a flaw in the method. But I have seen how after two months I was able (with Soma’s urgings) to ask an open ended question and much to my amazement she answered with an entire sentence! The “This is Autism” post that Emma wrote, took three sessions to write, but we persevered and it is beautiful. I know we can do this. But that first day back is always a jolt!
Thanks for the encouragement Sue. Love hearing about you and your son!
I think you are absolutely fabulous! There – I needed to begin with that!
It so often seems to be that space between what/where we wish we were and where we are actually at that can be so difficult, and I think your analogy about setting the diamond captures this beautifully. That space can be painful – but it is also full of possibility. Ariane, you are doing a wonderful job in supporting your daughter by accepting the practice and work that is involved in learning a new skill, for you, for Emma, and for others supporting her.
Thank you for sharing so meaningfully with all of us here! ♥
Thank you Leah. Sending love…
Never has your blog’s name been more appropriate! What an exciting time for you all. It is a pleasure to read and share in your experiences.
Thanks so much. Yes, it’s been an amazing few months here!
You touch on so many things here – as you always do! I am struck by the similarities to my experience. I have been using Facilitated Communication for over 20 years now, and we run into the exact same issues. People find it hard to believe this person who is typing could possibly be that intelligent. Those who try typing are often frustrated because they can’t type at the same level as I do (but I have all that experience and confidence – it makes a HUGE difference!) and often give up. The young people themselves also want to type freely and express their inner thoughts, and get frustrated when a beginning facilitator needs to start with one word answers to basic questions. But it is all worth it in the end if we can open up those channels of communication. Keep up the great work and keep sharing your stories!
It’s interesting, one of the reasons I decided to pursue RPM is because I have seen how those who use FC are constantly doubted, even when they’ve then gone on to become independent. As Emma has no physical reasons why she cannot point or type on her own, this seemed like a good way to mitigate some of that doubt, as there is no physical contact, but I’ve seen that Soma is also considered with suspicion and criticized for not having “scientific” studies to back the efficacy of RPM.
It seems to me that those who doubt and are suspicious it is less about the way something is done to produce communication and more that people cannot believe those who do not speak, or do not speak what they intend, are incapable.
I must say I find if incredibly depressing. I don’t know how you do it Char, year in year out, despite the naysayers… It’s exhausting and I often think about just not writing about any of it as those who are sure such methods are all suspect are so incredibly sure of themselves despite evidence from our children proving otherwise, they still insist… which is a little bizarre and surreal.
It does get terribly frustrating. I agree with you that the main stumbling block is that most people (and especially the ones in the special education field, it seems!) simply can’t deal with the possibility that someone who can’t talk or perform basic tasks on command (YUCK!) might actually be highly intelligent. I often wonder how many stories like Emma’s need to be told before we reach some sort of tipping point. There are so many amazing people who deserve to be heard!
Love the toes! I think I have that color. Glad your trip went so well. Cheering Emma (and you) on from many miles away! 🙂
Ha! You can paint yours and then we will all three match! XX
‘Every day I am being shown that what I believe it means to “presume competence” does not go nearly far enough. Every. Single. Day’ this sums up what we are experiencing since we made the decision to take C out of the ‘system’ and home educate him. Our children have the skills and the capacity to surprise us all the time – once they are given the respect and time to process their thoughts. Go Em and C :-))
Oh, this is so wonderful to hear! Thank you for telling me