Chris

Families in the Spotlight (Neely)

Everyone, including Neely, participated in my phone call to Allan during my interview with him about his son who will be four years old next month. Patiently the parents (Donna and Allan) responded to my questions over the speaker phone, my voice echoing in response to their excited answers. At times our dialogue seemed convoluted, as they described and elaborated on the dramatic changes in their lives, since they began RDI after their first visit to the Connections Center approximately seven and a half months ago. They are now incorporating RDI into every aspect of their lives; "the quality of experience sharing" is an overwhelming, positive result, something that Donna and Allan could not emphasize enough.

RDI came into their lives by word of mouth. Within a week or so of Neely’s diagnosis, Allan called an old acquaintance, a Ph.D. psychologist. He was surprised to learn that she was working in the field of autism. She highly recommended the book, Solving the Relationship Puzzle. At the time, addressing severe language delays was foremost in their minds, and “relationships” seemed so advanced it would have to be put on the back burner. “I thought, maybe when he’s 6 or 7 years old we’ll come back and work on that”, Allan stated. “Despite this feeling that it was ‘too advanced’, several months later, we got the book and Donna and I both read it. We were very impressed with RDI right away and knew it had to be part of our program for helping Neely.” They now feel that RDI actually helped Neely improve his language. “If we were to do it over again, we would have started RDI as soon as we had the diagnosis of autism.”

They also got a copy of Relationship Development Intervention With Young Children, which includes RDI activities, and tried some of these with Neely. Without having actually seen “RDI in action,” though, it was difficult for them. Also, before the Relationship Development Assessment, RDA, they tended to try to do activities that were too advanced for Neely. “Not much progress was made until we went to Houston for the RDA and Hypothesis Testing. That was really the beginning of our RDI program.”

Sitting behind the two-way mirror at the Connections Center, both Allan and Donna were immediately impressed by the way Ana Hermosilla was able to hold Neely’s attention. For an entire hour Neely grasped onto Ana’s facial expressions. Without any external rewards, she captured his attention and interest as she connected with him. Seeing her do RDI with Neely, made a big impression on them as they saw him do more facial referencing, almost immediately.

They were also impressed that Ana went outside the parameters of the book. Although she used activities in the book as a framework, she modified and adapted them in order to cater to Neely’s response. This taught both Allan and Donna was that they could “use the book as a guide but also create our own activities – to do RDI with anything that required referencing.”

Later when Allan and Donna were flying home and had a lay-over in Chicago, Neely and his Dad created the same facial referencing experience together. Neely loves walkways the moving paths in airports that help travelers get to their destinations more quickly. On the way home, at each walkway, Neely would wait for his Dad to nod his head before he walked on.

Since that time, Neely, Donna and Allan have been able to incorporate RDI in multiple aspects of their everyday life. For example, Donna and Allan created their own activity from “Pulling ropes.” When they tried this with Neely, they found that he wasn’t very interested. Instead of forcing the exercise as described, they simply used the idea and modified it into something that he enjoyed better. Allan explains: “You have to make it fun, if it isn’t fun, it isn’t experience sharing. Either you can keep trying the activity to see if he’ll eventually like it, or can do something different.” Accordion Tubes were the perfect fit for Neely. Accordion Tubes are “plastic things you pull apart and that make a sound. Put two together, and he pulls on that instead of the rope. Sometimes it would break apart and it was unpredictable, and one time it broke apart right away, to our surprise. The surprise element made it even more of an experience sharing thing, because we laughed together at the unexpected event.”

Allan states, “I always know that it’s working when Neely says ‘I want to do it again!” Accordion tubes were also successful because Neely has a sensory dysfunction and fine motor delays. Thus, some of the activities in the RDI activity book were not appropriate for him. “Sometimes Neely doesn’t like certain things. Blocks, were a problem, for example. He can build with blocks, but he doesn’t really enjoy it, making it almost impossible to do any RDI activity with blocks.”

Because of this Allan and Donna went beyond the book to create their own activities, something that Allan says “Dr. Sheely always encouraged us to keep doing.” When things from the book weren’t working out, they tried something based on the activity but specialized it to Neely and his needs. This has allowed Allan and Donna to work RDI into every part of their lives.

“RDI can be hard work at times, with a busy family, but at the same time it is fun to do. It takes a lot of commitment, but the results are well worth the effort. One of the things that makes it work for us is that we incorporate it into our entire life and our lifestyle. We do it at family gatherings, not just during a therapy session. Yesterday it was raining, and Neely wanted to play in the rain, so we played the “Stop and Start” game in the rain, and jumped puddles together. This incorporated experience sharing, and coordinating actions for five or ten minutes into an every day experience. We both got soaking wet but enjoyed these few minutes of play together. We are always trying to get some RDI in, when we can. We know what experience sharing and referencing are, and so we try to incorporate that into our daily life – to have what Dr. Gutstein calls an ‘RDI lifestyle’.”

The hard work does not come without pay-off. When I questioned Allan about Neely’s relationships with other children, Allan related a personal story about Neely and his neighbor. “We have neighbor that is eleven months older Neely – and Neely pays more attention to her now. He will even imitate her. A while ago she was watching us do 'stop and start' with Neely. A couple of weeks later she and Neely were doing it on their own.”

Another example of Neely’s interactions with other children occurs within his own family. Neely has been able to “experience share” with his recently adopted sister, who is 1 ½ years old. One example is his initiation of peek-a-boo with her. Another is his ability for synchronizing play as she was drinking a glass of water, and he mimicked her. They also did their own version of coordinated actions together. At a Memorial Day party an elderly woman was dancing with Neely's sister and he cut in to dance with his sister. Because she was adopted recently, Neely had no experience of having a sister before RDI, so comparisons cannot be made.

However, Allan and Donna feel that RDI has certainly made Neely much more capable of relating to his sister in a positive way.

Donna adds that “yesterday we went on a field-trip, it was Neely’s last day at pre-school. It was a petting zoo, and Neely saw a turtle, and pointed it out to a little girl. He pointed to the turtle, looked at the girl’s face, pointed again to the turtle and said ‘Look, a turtle!’ watching her excited face as he shared this experience with her. It was exciting to see Neely engaging in joint attention with a peer!”

Donna and Allan both feel they owe a lot of the change that Neely has gone through to the Connections Center and RDI, which has become an intrinsic part of Neely’s therapy. “Dr. Sheely’ is wonderful. She is very warm and caring when we talk to her over the phone, very understanding and personable. Her comments, whether by phone or email, are always uplifting, inspiring and empowering. She encourages us to experiment and make our own discoveries, giving gentle advice when needed, but not coming across in an authoritarian manner. She has provided excellent guidance and feedback, helping us keep our RDI program on track. "

In addition to the support that Dr. Sheely provides, Allan and Donna also attended an RDI workshop with Dr. Gutstein, and recently got a copy of the new RDI video. “Even though we had read the books, the workshop and video were very helpful. They all tie together very nicely. So much of this is non-verbal, it is hard to put non-verbal stuff into books, and it helps so much to see examples of RDI being done with various children.”

Regarding the videotape reviews that Dr. Sheely does for them, Allan stated “Every two weeks we have a tape to send in. The second tape we sent in, Dr. Sheely liked what she saw and gave us a ‘rave review.’ We were motivated to keep sending in good tapes because it was a barometer of improvements in our son’s development, it made us feel we were on the ‘right track’ when we got a good review. We wanted to keep sending in tapes that showed improvements in Neely’s development.” Allan even jokes that this is the “pressure of the tape review. Sometimes when a tape is due we will start improvising things to make sure we have some new and interesting activities to show to Dr. Sheely. Deadlines are helpful, because we are a busy family and it is very hard to do RDI without structure.”

One of the things they have seen in the last two or three months is an expansion in language and an increased curiosity about the world. Neely asks more questions now, Allan states. “He is not conversational yet, he still has language delays, but we feel RDI is helping improve his language, and he is asking us a lot more questions. At the playground, one evening we were talking about different animals going to sleep,” Allan said, “and as it started to get dark, I told him it was time for the birds and squirrels to go to sleep. Neely expanded this to talk about zoo animals, and he asked ‘Where do gorilla’s sleep?’ and then, ‘Where do rhinoceroses sleep.’ He asked several questions about animals. Recently I was driving him to his preschool and we stopped in back of a school bus. ‘Where’s the bus going?’ he asked. I said ‘Maybe to another school’ and he said ‘Yeah, bus going to another school – another school that way.’ It’s great to be able to talk to him in this way, to see how his curiosity about the world is expanding. He’s not quite there yet with regard to being conversational, but it’s emerging.”

One of the stories that Donna tells follows. “When Neely was first diagnosed, I went to meet the leader of a local Autism support group. We decided to meet at the mall, and it was a horrible experience. Neely was so bad with the escalators and the elevators at the time. He was obsessed with them, wanted to ride them over and over, and if not allowed to do so, would throw major tantrums. Now, he goes on the escalators no problem. In January, we filmed him at the mall, to send to Dr. Sheely for our videotape review. ‘Neely at the Mall’ has become one of Dr. Gutstein and Dr. Sheely’s favorite clips. The funny thing is that Neely was so awful at the mall that we wouldn’t go anywhere near there for several months. So, we were amazed, after doing RDI for a couple of months, that even at the mall he was able to reference us for approval for going on the escalator, and accepted it when we shook our head ‘No’. He waited patiently for us to nod our head in approval before riding. No more escalator tantrums.”

Allan adds, “We are also teaching him to walk together with us – we can basically walk with him down the street without holding his hand now, he used to wander all over the place. It isn’t perfect, but he will stay with me a lot better. When riding his new bike, at a curb, he will usually wait for my approval before crossing the street.”

A few nights ago, on Father’s Day, Allan got some approval of his own. When Allan was tucking Neely in for bed, Neely asked for a goodnight kiss. Allan feels that one of the greatest rewards of RDI is that now Neely wants something back from him-- to see the reaction on his father’s face. What a wonderful Father’s Day present this was.

Donna summed it up with, “We don’t want to paint a perfect picture of Neely, just a picture of our son who has made remarkable progress since starting RDI. It has made such a big difference in our lives and the life of our son. He has a long way to go, but we now feel that he’ll actually get there, in time, and we are determined, committed, to stay with this – because it’s working.”

Chris