Hope I can talk

My 9-year old son, Yi, was diagnosed with Autism when he was two. Since 18 months old, he has been getting early interventions, Occupational Therapies, Physical Therapies, Speech Therapies, Behavioral Therapies (ABA), and seeing many other specialists and experts. He has been having 10–20 hours therapies per week at a regular basis. He’s in a public school with full-time 1:1 aide. He has what’s called non-speaking autism. He can only answer basic yes/no questions verbally, make verbal requests for basic needs (e.g. food/drink/bathroom), and use iPad apps to make simple choices from some pictures. He can’t write or use sign languages, due to fine motor challenges. Basically, we have no way to understand what he thinks, what he likes, what he wants, beyond the basics or routines. We have been preparing for a future where he needs 1:1 support for the rest of his life.

But then, everything changed on March 1 and 2, 2022.

Through a series of randomness, I signed up a RPM workshop with Lenae Crandall. This time, I didn’t do any research before joining — after all these years of working with so many experts and specialists, I didn’t hope for anything. My honest thought was: it doesn’t hurt to try the 2x45-min sessions and I can move on to say I have tried.

Towards the end of the first 45-min session, Lenae was telling Yi how she understands that sometimes Yi just can’t control his body (e.g. wrist hitting hard on the desk). Then this happened: Yi grabbed the letter board and started to spell: Hope I can talk.

I was shocked… Tears came to my eyes… I was crying the whole way when driving home. I haven’t cried because of Yi for at least 4 or 5 years, despite all the challenges along the way. But this broke me: hope I can talk.

It’s the first time ever in his entire life that we get to ‘hear’ the thoughts on his mind!

So much emotions came to my mind: I feel such profound joy — now we know it’s possible for him to communicate! I feel guilty — why didn’t I sign up when I heard about RPM 4 years ago?? I was sad—knowing that he understands, he’s fully aware, and he’s trapped… I feel his pain—hope I can talk… I was so overwhelmed.

By the time it was the end of the 2nd session, Yi shared the followings when Lenae wrote ‘Dear world’ on paper and asked him: if there’s anything you can say to the world, what would you want to say?

I love my dad, he is rad.

Mom is my friend, to the end.

I cried, again…

How you can help

As you can imagine, I have been reading a lot these past few day to learn more about RPM, including books and blogs written by non-verbal young adults who use letter board to communicate.

Non-speaking autistic kids with apraxia can’t talk, can’t type, and can’t use sign language. With a fully capable mind trapped inside their body, they are not able to express what they understand and what they think. They are often misunderstood by so many, including their own parents. It’s very miserable and very frustrating. RPM is giving them a tool to be able to demonstrate and to communicate. To quote Ido:

To deny communication is a crime against humanity.

There are a still a lot to learn, but I want to share a few early learnings. I hope these are actions that we can all take to better support this community.

1. Respect their intelligence. Even though their bodies act like a toddler, their intelligence is intact. They do understand and have emotions. Do not discuss the students in front of them. Do not use simplified languages or use baby talks. Talk normally, like you would with any other students at the same age. Give them age-appropriate materials and lessons.
2. Recognize the disconnect between the brain and the body due to Apraxia. Their bodies simply do not obey instructions from their brains. This is the area where OT, ST, PT, and APE can help a lot, by consistently helping them to develop motor pathways for purposeful movements (e.g. speech, pointing, spelling, drawing, writing).
3. Accept that students are learning regardless of what their bodies are doing. They might have peripheral vision. Personally, this is new to me. I thought that when Yi’s not looking, or not sitting next to me, he’s not paying attention and he’s not learning. I was wrong.
4. Understand the anxiety trigger. Students like Yi spend their entire life trying to prove to others (including their parents) that they are not dumb. It’s very stressful and frustrating for them. Now I can understand why students who can’t communicate can have severe mental health issues (e.g. anxiety, depression, suicidal), especially after puberty kicks in. It’s common for people to associate toddler-like behaviors with toddler-level intelligence. Because of the lack of control of their bodies, they often act before they think. The non-purposeful movements often lead them to pick the wrong answers, which makes it even harder for others to trust their intelligence and makes them more upset about themselves and more anxious every time they are being tested or evaluated.

Reflection as a special-needs parent

As mentioned above, I felt guilty — why didn’t I sign up when I heard about RPM 4 years ago? But then, I was able to stop that self blaming and guilt. Lenae told me that what Yi was able to demonstrate in his first ever RPM session was not the norm. All the efforts we have been doing over the years have prepared Yi for this moment.

• PT (Physical Therapy for gross motor skills): Yi started PT since he was 18-month old. Yi couldn’t stand up on his own from sitting position and vice versa until he was 3-year old, after working with PT for over a year (babies can do that at about 1). He needed to be carried everywhere until he was about 6. Now he can hike for 5–6 miles if we push him. We have been doing hiking with Yi every weekend for the last 2–3 years, which strengthen his body and gives him better body control.
• OT (Occupational Therapy for fine motor skills): Yi started OT since he was 18-month old. He couldn’t pick up food until he was 2-year old, after working with OT for 6 months (babies can do this at about 6 months old). He has been having OT five times a week since last summer to help him gain better fine motor controls.
• ST (Speech Therapy for verbal communication): Yi started ST since he was 18-month old. His first word was ‘mama’ when he was 3 years old. Progress has been minimum. We finally were able to find a ST in LA (not where we live) who specialized in apraxia last year. Thanks to pandemic, Zoom meeting with ST is now possible.
• Reading/academic: I have been reading age-appropriate books to Yi every day. I remember when he was 5 or 6, my biggest goal was for Yi to sit and listen to a story for 5 minutes. Now we are reading books for about 30 minutes per day, although not in one go. iPad apps also make it possible for us to do math, science, and other exercises over the weekend with Yi, although less of a routine. It’s hard to continue sometimes when it seems like he’s not paying attention or you don’t get feedback to know that he’s learning. But keep doing it, it will paid off.
• ABA (Applied Behavior Analysis for behavior treatment): ABA has worked really well for many people on the spectrum. I have been seeing parents sharing joy about how after they started ABA and things improved dramatically. Reading books by Ido and seeing what Yi is capable through RPM, I now see how the drilling technique with non-age appropriate contents can do harm to this group of students, which is a key piece that needs to be changed in ABA for students like Yi. Regardless, the ABA sessions we have been having do help increase Yi’s ability to stay focus, be more flexible with new people and environment, and do purposeful pointing, which is a key skill for RPM.
• PRT (Pivotal Response Treatment): PRT is a form of ABA, but focusing more on following the students’ motivations and develop communication and language skills. We were fortunate to get to work with Dr. Lynn Koegel. Even in her first session with Yi, we were able to see Yi recognizing and pointing at words while Yi’s rest of the team was still working on matching shapes and colors.

Yi has been very fortunate to be working with many amazing people who care deeply for him and his growth. It truly takes a village. There are too many people to thank: the teachers (both in Gen Ed and special Ed), the aides and staff, the therapists/specialists, the special needs parents, and many many supporting friends.

To special-needs parents out there

1. Above everything else, take care of yourself: your mental health, your physical health, your overall wellbeing. Do whatever that gives you energy to keep going (stay home, work full time or part time). This is a marathon, not a sprint. You can only power through that much, you will break sooner or later if you can’t take care of yourself.
2. Don’t blame yourself. Every child is different. Every family is in different situation. Don’t compare with others and feel like you fail or your child has failed. As a full-time working mom, I couldn’t help but feeling guilty from time to time about not able to spend more time helping Yi. So I need to remind myself this: I am trying my best, I am good enough.
3. Don’t give up. This journey is not for the faint hearted. The daily challenges that we have (e.g. my son threw someone’s phone into a lake, he kicked our nanny and her toe nail came off and blood is everywhere, the self harm they do to themselves…) and the little progress we often see or feel are making it so hard to continue. Sometimes we feel sad, sometimes we cry, we are exhausted, we are stressed, and we feel hopeless. But after all of that emotions, lift yourself up. Don’t give up, for there is always hope.

I know this is just the beginning. Lenae is at the top of the world in terms of what she can do with Yi during the RPM session. It will take us time, months or years, to get there. It is going to take a process for school to support Yi with this new learning and communication method in school. RPM is a not a magic bullet that solves all the problems, but now I know, open communication with Yi is possible, teaching him age-appropriate content is possible. Maybe, just maybe, college and independence are possible…

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A few links about RPM, for those who are interested to learn more:

• Halo: founder of RPM, Soma and her non-profit organization, with many helpful information.
• H.E.E.D: Lenae Crandall, the RPM provider that we work with.
• A Google doc that I put together while learning about RPM

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Update in March 2023: one year after we started this journey, a lot has changed.

• See this post on Yi’s latest development in 2023.
• Spell 2 Speak app for iPhone and iPad: Yi’s older brother (12-year old) designed and built an app for Yi to practice typing on iPad. It’s free for all.
• June 2023, Yi’s book, I have a Voice, was published on Amazon.