Interview by Shanti Kurada
As I walked in to the Nortons’* living room, I could tell they loved music. There were a set of drums, a guitar, and other musical instruments near the fireplace. I later found out that Mrs. Norton plays the piano, guitar and both she and her daughter love to sing. Her son, Michael*, plays the drums, bass guitar and the electric guitar. The room was also brimming with books – the Nortons are avid readers, and their reading interests revolve around literature, economics, sociology, and history. The kids enjoy reading the Alvin Ho series and the Beacon Street Girls series.
We sat down at the dining table and began to talk. With both of them being teachers, and active members in their community, it was not difficult to get the conversation going. We discussed their jobs, their volunteering activities at the church, and their children – a 13-year-old boy with autism and a 9-year-old neuro-typical girl. While life continues to be challenging, Michael had definitely come a long way, and was doing things that they thought he would never do – he was having meaningful conversations with his family, remembering people’s names – even those he doesn’t meet often, and wanting to sit with his peers at church. We began to talk about some of the therapies and approaches that had helped their son make progress at school and especially in his community. The following is an interview regarding their experience with RDI.
SK: How long have you been practicing RDI?
Dad: It has been almost 4 years now.
SK: How/where did you first hear/learn about RDI?
Mom: A friend gave us a brochure for RDI training in Fremont. The training was conducted by Dr. Gutstein. This was 4 years ago. We read the brochure and thought it sounded interesting. So we signed up for the training. It was a 4 day training where he introduced the RDI intervention, and we watched videos and case studies on various families that were doing this intervention.
SK: What was your first impression of this intervention?
Dad: Well, we had tried having playgroups with typical peers for our son. We would give him a script to follow. Things like, “Let’s play Monopoly.” to initiate interaction with his friends. But when they responded by saying, “I don’t want to play Monopoly.” or “Monopoly is so boring!”, he wouldn’t know how to respond, how to continue the interaction. We realized the script wasn’t going to work in a real life situation.
Mom: When we were first exposed to RDI, we felt it was more dynamic, more suited to real life situations, where things don’t go according to script.
SK: What made you want to commit to trying out RDI?
Dad: Our son would simply ignore people, or when he did talk to one of us, it was mostly about things that interested him. Or when we tried to converse with him, he would not know how to respond. He could answer some fact based questions. But conversations are rarely about facts. He was often isolated. We felt that RDI might help him learn about relationships. So, we began RDI consulting with Maisie Soetantyo.
SK: What was your experience with RDI, in the beginning stages?
Mom: It was not easy. I ended up doing too much. I did not give him a chance to initiate, think for himself, or come up with his own ideas. I often jumped in, trying to fix his mistakes, to protect him from failure. I often tried to determine the course we would take. For example, we would try to build a house of index cards, using some tape. I would warn him if he didn’t tape things properly. Gradually I learnt to let the house collapse and see what he would do about it. It took me some time to slow down and give him room.
Dad: It was so much easier to have therapy for him. I used to feel good that the therapist is teaching him things and his learning is being taken care of. But the therapist sees him only once a week, or once a day. There are so many missed opportunities throughout the day that parents can use to teach their children. But then once you become an RDI parent, the responsibility is on your shoulders. It was not easy but it was rewarding. I began to see that I could have a big impact on his learning.
SK: Did you take to RDI intuitively or did you have to work at it? How and in what ways?
Mom: I really had to work at it, because I was used to being in the driver’s seat, when it came to any interaction with my son. To let him become a more active participant, I had to step back a little. Maisie was very patient with me. With her coaching, I learnt to speak a new language with my son. When a problem occurred, I had to learn to highlight it rather than offer a solution.
Dad: No, it did not come naturally. I would do activities like mopping the floor, or taking out the trash with him. I like to be efficient with tasks. When I did these chores with my son, they would take forever! I would get impatient. I would try to correct him, or speed him up. It took me sometime to understand that the task was not the goal, the task was being used as a setting to teach him about relationships. In retrospect, I realize that teaching him the task is easy. Every task has x number of steps performed in a certain order. Sooner or later, every kid will learn this, with repetition. But we were trying to address a completely different skill set – how to respond to a constantly varying situation – so the task is only the backdrop.
SK: How did practicing RDI impact your family life?
Dad: It wasn’t as easy as letting a therapist take care of his learning. There was more responsibility on us. We had to find a way to balance this with everything else going on in our lives. We both work full time jobs. We’re actively involved with our church. The best way was to try and make RDI a part of everything we did. And we did that most of the time, if not all the time.
Mom: It got a bit challenging with our daughter. We would take these videos of our son, and when you have a neurotypical sibling there, he/she wants to be the star of the show. Or at least, some part of it. We tried to create a role for her. At first, she didn’t know how to handle the camera since she was so young. Once she learnt to do this, the videos became easier on her.
SK: What were some of the other challenges you ran into?
Dad: It was hard for me to keep invading his space. He wanted to be left alone. I didn’t want to keep bothering him, placing these expectations on him. It can be unnerving to keep trying to get in someone’s face when they don’t want you there.
Mom: One of the goals we had was to improve his ability to handle unpleasant changes, disappointments. What if things don’t work out the way you want them to? How do you learn to handle that? So we had to create situations where we make him upset. Like promising a book as a reward for some task – then after he finishes the task, we can’t find the book. Or we would promise to go somewhere, like his favorite place, and in the last minute, cancel due to a conflicting event.
SK: Ouch! That must have taken quite a bit of courage. Purposely trying to rattle him! How did he handle it? How did you help him with this goal?
Mom: At first, it was hard. We would talk through various strategies – breathing, counting to 10, etc. We would be there for him. There was a lot of anxiety on our part, that we needed to overcome. Over time, he became more independent with these types of situations.
Dad: In 6th grade he went away to Science Camp for 4 days. We were worried, because it would be full of surprises – the food may turn out to be something he doesn’t like. He needed to follow a different set of rules. He did great! I was chaperoning, so I was in the background. But I stayed away from him. One day he was offered 3 different lunches, none of which he generally liked at home. I expected him to freak out. He surprised me. He calmly chose the noodles.
SK: What made you continue/stick RDI, despite the challenges?
Dad: As we did more RDI, we began to feel more confident that we can be a big part of our son’s growth. We felt that the way we acted and communicated with him would make a difference to who he would become.
SK: What (if any) changes did you start to see in your child?
Dad: One of the first things we noticed was he was more with us. As we were doing an activity, he would turn his head, look at me, to check my reaction – is it ok to do this? – this was new. We were used to him going about tasks without giving a thought to what the other person felt.
Mom: Another thing is that he would recollect the names of people. Before he would say this boy or that girl. He began to refer to them by names. He would say, “David helped me with the project.” or “Stephanie sat next to me.”
SK: Looking back, what are some of the major changes you have seen over the last four years?
Mom: Now, he initiates conversations, not just with familiar people, but even newer people. He does not get stuck in his own world. At a recent church activity, he chose to sit with other kids his age, for the very first time. He usually sits with us. He even talked to a couple of them. It was so neat!
Dad: When we visited my brother in Seattle, he understood that his uncle is my brother, and his kids are his cousins. My brother came up to me and told me that he is seeing a different side to him. He was having conversations with various members of the family. He had never done this before.
SK: What are some of the minor changes/subtle shifts that you see?
Mom: We notice more flexibility, more curiosity. He wants to try out new things, experiences. Recently, he wanted to try out a hip hop class. Out of the blue! We said, “Go for it!”. He stuck to it for a year, then decided hip hop is really not his thing. But we’re so excited that he’s not afraid to take on new experiences and the challenges that go with them. Before the first day of Junior High, he had not received a schedule. He went to school, not knowing what his classes were. They gave him a schedule, and on Day 1, he kept following the schedule, switching classes appropriately. He could never have managed this independently before.
Dad: Whenever I asked him to rate something on a scale of 1 to 10, he would always say either 1 or 10. One day he got on this crazy ride, and when I asked him the familiar question, he said it was a 5. “Why?” I asked. He described some things that were good about it and some things that were scary about it. He is beginning to see the shades of gray in between. That something can be good and bad at the same time.
SK: What advice would you give to new parents considering RDI?
Mom: It’s a process. Don’t get overwhelmed. Do the best you can. There will be times when you feel you are not doing enough. As long as you get back to doing it more regularly, it’s fine. The pace will vary. Sometimes you will end up doing a lot. Then life gets you and you slow down. As long as you keep at it, on some level, it will be helpful.
Dad: In the beginning,, we tried to be more structured but this put a lot of stress on the family. We found it easier to do RDI more on the fly, than have to constantly be structured, have a specific time allotted, and frame activities. We tried to incorporate RDI into our lifestyle, into our communication. We would try to do one structured activity a week, which would require some planning. The rest of the time, we did the best we could, by making RDI part of our daily activities. So it really depends on the family. If things work for you better if you are disciplined and organized, then that’s the way to go, for you. If not, you need to find a way to continue doing RDI without slacking off for long stretches.
SK: Thank you so much for sharing your experience with RDI. Now, for a general question – the one that is on all our minds. How has having a child with autism shaped your life?
Dad: People always ask me, “How do you do it? How do you work so hard everyday, to take care of your child?”. I don’t think it is hard on an everyday basis. In the beginning it is, but you fall into routines, patterns. Your kid starts going to school, classes, etc. Your life revolves around certain things. You develop an understanding circle of friends. You modify outings, activities. I think the thing that is hardest is thinking about the future. What will happen when we’re not there? I think that is a hard question for parents to ponder.
Mom: Yes, parents are pretty amazing at adapting to the situation, making sacrifices. But we can’t control his future. Letting go is hard. So we need to do our best to prepare him for independence. But we are so thankful. Our son loves music. His dream is start his own band. Now that’s something that absolutely requires teamwork and relationships:)) Maybe this will be his way of finding and keeping those relationships.
* Names have been changed to protect the family’s privacy.
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