Noah's Autism Therapy Part 2 - Soma (One of the Key Players)

This is Soma. She has a last name, but I can't pronounce it. But if I google it, I can tell you that her full name is Soma Mukhopadhyay. But we just call her Miss Soma... otherwise known in our house as "The Autism Whisperer".

RPM stands for Rapid Prompting Method and it's Soma's baby. She developed it as a way to help her severely autistic son, Tito, and realized that it could be used with other children who have autism. To make a long story short, she now lives in Austin and RPM is done at her clinic - called HALO.

You can go to HALO's website to find out all the info you need about RPM - what it is, what it does, how it can help your child. You can even see videos of children in RPM sessions. It'll blow you away!

But here's what RPM has done for us and for Noah. It gave us hope and it gave Noah a voice.

You can find my very first blog post about RPM (written three years ago) HERE. The second post I wrote about RPM was written a few months later and you can read it HERE.

Basically, though, until we started doing RPM, we thought Noah had MR (cognitively disabled). And it wasn't so bad. We just assumed because he couldn't do much that he didn't know what was going on. In fact, he had the same IEP goals for three years of school because he was never able to master them.

Simply put, he never did manage to master the goal of touching his nose and stacking one block on top of another.

Guess what? He still can't do it.

But he's brilliant. Absolutely brilliant.

RPM gave Noah a voice. It lets us know that he's "in there". That is he totally 100% cognitively normal. He hears everything we say. He knows what's going on. He just.can't.get.it.out.

Can you imagine how hard that is???

To be trapped in your body and not be able to communicate?

RPM is giving him a way to communicate. It's painfully slow b/c Noah has CP, too, and he's not that great at reaching out and spelling with the letterboard. But he's learning. He's slowly learning and one day he'll be able to do it.

Okay, so I know this is terribly disjointed. It's really hard to get it all out in a blog. And I've probably picked a terrible time to try and type all this out... especially as I'm meant to be getting the kids ready for bed. And I'm frustrated because RPM is so important to us and I want to do it justice... but I've been terrible at blogging lately and am afraid if I don't do it now then I won't, you know?

Basically, RPM doesn't tout itself as a full on communication program. It's an academic program. It teaches us how to teach our kids. And some people may say... why teach them academics? Noah can't talk. He's still in diapers. He spins in circles. How are academics going to help him in his life?

And I get that. I really do. But he's a 9 year old boy inside the body of a 1 year old. And that 9 year old boy's brain will atrophy if it's not worked with. He deserves to learn. He deserves it. And I respect him enough and love him enough to try and teach him.

Just think how as a mom sometimes you just yearn for adult conversation. You think that if you're around babies for one more day that you're going to go crazy. Now imagine if your whole life people thought you were literally dumb - so they never taught you anything. They let you watch your Elmo videos and listen to your nursery rhyme songs and did Patty Cake with you for your entire life.

How frustrated would you be? They say that puberty is the age that many nonverbal boys with autism start to become violent. Can you imagine going through puberty and no one telling you what was happening? To be trapped in your body and the only way you can communicate is by shrieking and hitting your head or hitting someone else?

I tell you... the moment we realized that Noah knows what's going on is the moment that everything changed. You could visibly see that Noah was so relieved that we found out. He loves having us read to him. He loves learning. He loves math and geography and he loves that we respect his intelligence. And I love him enough to keep doing it. Even though I know that all these hours spent reading classics to him or teaching him math or telling him about the timeline of history... even though I know he might not ever be able to use it.... I do it because it's important to him.

I know deep down that Noah might not ever have a job, but maybe he'll be a writer someday. Soma's son, Tito, has authored several books. There's also a teenager who does RPM who loves playing the stock market. He does RPM with his mom and tells her what to invest in and he actually earns his pocket money that way. Isn't that amazing??

But even if none of that happens, it's fine. Because RPM has - in a way - given me my son back. From RPM, I know that he loves math because it never changes. I know that he wanted an airplane for his 6th birthday. I learned that he wants to play the piano and that he can spell "Mesopotamia" and "Cuneiform". I also know that he hates Fairy Tales and that I can bribe him to do his RPM work by threatening to read "The Princess and the Pea" to him. This is incredible stuff when you have a child who is nonverbal. We still have a loooong way to go for Noah to be able to fully communicate on a message board, but I can't wait for the day when he's able to convery his feelings and thoughts by spelling them out.

It breaks my heart when I hear someone say that their autistic child doesn't know anything.

That's not true! I honestly believe that all children with autism KNOW exactly what's going on. I've seen it! I saw a group sesson of severely autistic, nonverbal teenagers doing RPM. One was on the floor rolling around. Another stimmed the entire session - and they were discussing the earthquake in Haiti and asking if there was a God. It's true! I can't even begin to tell you how amazing it is to see people who the world has given up on... and to see inside their souls. It is unlike anything I've ever experienced.

So I really urge you... if you have a nonverbal child with autism... PLEASE consider taking them to HALO. It IS expensive. Texas clients can only be seen once or twice a semester (due to demand) and it's $175 for two sessions - a 40 minute session and a 25 minute session. Out of state clients and international clients can come for a 4 day camp - which is basically two sessions a day for 4 days. It's around $785 (I think). So, like I said, it is pretty pricey.

HOWEVER..... it is one of the best thing you can do for yourself and your child.

In my opinion, here's what you need to do....

1. Read my blog posts above. They tell you a bit more about RPM.

2. Go to the Halo website and read up on RPM and watch the videos on the HALO website.

3. Look up "RPM Autism" videos on Youtube.

4. Pre-Order "A Mother's Courage" - this is a documentary about a mom who travels from Iceland to Austin to find hope for her son. I actually know this family and have seen her son in sessions. He's amazing!

5. Become a member of HALO. It's around $25, but will grant you access to the Msg Boards which can also give you information about RPM.

6. Travel to Austin and spend a day observing sessions. I think this is a MUST! Soma has a huge waiting list and it can take a while to get in to see her. If you are thinking of starting RPM, you really need to see it in action. Bring a box of Kleenex, though, because you will be driven to tears when you realize the potential that our children have.

7. Order Soma's RPM Training Manual (on the HALO website).

8. Order Tito's books.

9. Book a session with Soma.

A word of warning, though. Soma is very cut and dry. She's very professional and she's very busy. There's not a lot of time for chit chat after your session. That's why you need to learn as much about RPM before you do a session and take DETAILED notes during your child's session. And order a DVD copy of the session. YOU THE PARENT will be responsible for maintaining RPM at home, so you need to become an expert in it.

I'm not an expert in it by the way. Do as I say... not as I do, right?

But, seriously, I truly believe that God has given Soma a gift. She can truly reach our children in ways I've never seen possible. I still can't get Noah to do stuff that Soma can get him to do. She has a unique, special gift and it is miraculous what she can get our children to do.

Okay, that's all I can type right now. It is officially past the bedtime for the kids and Sim's giving me the stink eye. Before I go, though, PLEASE watch this video about a girl with autism who has learned to communicate through typing. If you haven't seen this, it'll blow your mind. It is incredible. It's not RPM, but it does give you an excellent idea of what our children are going through.... and how they know exactly what's going on.

KLEENEX ALERT! Wash off the mascara before you watch it...


Next time.... and I'll try to post sooner (promise!), I'll talk about the 3rd Key Player in Noah's life... his homeopath.