Sunday, October 12, 2008

Our MESSI Journey Through RDI

I wanted to take this opportunity to express my gratitude to Dr. Gutstein, Dr. Sheely, Hannah, Bev, Carlotta, Erlap, and all the wonderful staff at the Connections Center who have made this program possible. Not a day goes by that I am not grateful for your work, and I am reminded of how lucky I am every time I interact with my son. Without you, my life would be very different today.
I first discovered RDI®about one year after my son Alex was diagnosed. I purchased a copy of Solving the Relationship Puzzle based on the recommendation of another parent, and right away I knew that my prayers had been answered. Luckily, there was a Certified Consultant in my area, and I put our name on her waiting list immediately. I had visions of Alex becoming age-appropriate, and frankly, “normal” within a year. Autism would be nothing but a bad dream from our past. Alas, this was not meant to be.
We started out with the original version of RDI®, 1.0 so to speak. We had the empty room with the beanbag chairs, we did the activities, we chanted and clapped and threw Alex into piles of beanbag chairs. He loved it. I thought we were getting such great connection. After all, he was looking at us and laughing and having fun. I didn’t realize it at the time, but we were entertaining him.
Then came RDI® 2.0, the introduction to the Master-Apprentice relationship. Boy, did we have a problem. Alex was used to controlling our sessions, and we were back to square one. Actually, we were back to square zero – or Stage Zero, as the online listservs were calling it at the time. Disenheartening? Sure. Give up? Never!
It was around this time that I decided to become a Certified Consultant myself. My Consultant had a child of her own and decided to become a stay at home mom. My hope was that I would be able to work with Alex independently, while bringing this excellent program to other families in need. Yet another pipe dream that simply was not meant to be! While my training did give me an in-depth understanding of the foundations and methodology of RDI®, I found that I was still unable to be objective in my assessment of Alex’s progress. I found another wonderful local Consultant, who is with us to this day. She tells me honestly when he is progressing, and guides me through the obstacles. We would not be where we are today without her.
Finally, thanks to our new Consultant, the introduction of the RCR Cycle and a lot of work, we were out of Stage Zero! Progress at last! Alex started wanting to do things with us. He started referencing us when he was uncertain. Family and friends commented on the changes in him. Was he “cured”? No, but he was improving. Every tape we sent to our Consultant looked better and better.
Then it was time for his re-evaluation. I took him to my Consultant’s office, imagining my pride when she told me that he was ready to move up to the next stage. Unfortunately, this also was not meant to be. As soon as we entered her office, he made a beeline for her toy cabinet and started emptying it. He did not respond to my initiations, or initiatate any interactions with me. He looked like he’d never had a day of RDI® in his life!
Thankfully, my consultant had an idea. During RDA® 2, she incorporated many sensory breaks, and found that he was more engaged and cooperative. A sensory diet – the missing piece! We started incorporating sensory breaks into his daily routines and into his RDI® program. Progress was slow but steady. Then came the day that I knew beyond a shadow of a doubt that he had mastered emotion sharing. I was working on my master’s degree at the time, and trying to study. It had snowed the night before, and Alex really wanted to go outside and make a snowman. He kept interrupting me, and I was getting annoyed. I actually remember when this thought went through my mind, “Geez, he’s acting just like Tyler!” (Tyler is his NT younger brother, who was a toddler at the time). I turned back to my books, and then I realized “DUH! He’s acting just like Tyler!” I jumped up and cheered, and told Alex that yes, I would be happy to go outside and build a snowman with him! The studying had to wait for another time.
This doesn’t mean that it was all smooth sailing from there. More co-occurring disorders emerged and were dealt with. Alex was diagnosed with a mild seizure disorder around the same time that Dr. Gutstein unveiled his new objectives. We hadn’t noticed it before because he was seizing in his sleep. We found a good neurologist, got him on the proper meds, and he continued to make progress.
I was very excited about Dr. Gutstein’s new objectives. I read through them and eagerly wrote down the ones that I thought Alex had mastered. While my consultant agreed that he did have some emerging skills in the higher stages, she felt it was necessary to fill in the gaps from the earlier stages. Again, visions of him “cured” danced through my head, but deep inside I knew that she was right. I was disappointed at first, but then pleasantly surprised when I noticed some of the higher level objectives emerging right along with the earlier “holes” we were filling in.
And then the launch of the Operating System came along. Like every other step on this journey, it’s been MESSI, filled with setbacks and surprises, but I have finally learned that this is par for the course. The newest objectives are the most comprehensive, thorough, and understandable yet, and I am looking forward to seeing what new directions Dr. Gutstein will take us in during the coming months. Thanks to his constant work and unwavering commitment to our children, my son is doing things the “experts” said he would never do.
I thank God every day for Dr. Gutstein and his work. He may live hundreds of miles away in Houston, but he has affected our lives in more significant and lasting ways than many of the people I come into contact with regularly. It has not always been easy to keep up with the changes in RDI®, but as the parent of one of those “challenging” kids who just didn’t seem to progress for a long time, I thank Dr. Gutstein for never giving up.
Yes, I have put a significant amount of time and money into RDI®, and no, it was not the quick fix miracle cure that I was hoping for years ago at the start of this journey. However, I have come to the conclusion that the setbacks have made me a stronger person, and a more appreciative parent. At one time, I wanted nothing more than a magic pill that would cure my son and make him age appropriate and perfect, but if I’d found that, I would have missed all those wonderful moments I spent watching him and helping him to develop in his own way. Think about it, when you bring home a newborn baby, you are excited to see this child grow and develop, but that does not take away from your enjoyment of your baby as he is now. Even through all the stinky diapers and sleepless nights, you still revel in the fact that you are going through this journey with your child, sharing the milestones and the setbacks together. You do not say, “Wow, this is a nice baby, but I think I will really bond with him when he turns 12!” No, you enjoy your baby as he is now, while doing all that you can to help him to grow and develop into the best person he can be. That is what RDI® has given back to me, and to all those other dedicated families out there, who are working with Dr. Gutstein and his staff to blaze a new trail in the autism community. We know that there is a better way, because we are living it.
Thank you, Dr. Gutstein. Your work is so appreciated and so necessary. Thank you for not giving up on our children, and please, keep those MESSI developments coming! I can hardly wait!

1 comment:

bergblog said...

Wow, that is quite a story. I am looking forward to hearing more. I am one of those who really want to do RDI with my son but cannot afford a consultant. I am struggling with the beginning stages as a lone ranger. Thanks for taking the time to help those like me by writing about your experiences. BTW, my son's name is Alex, too.