MIRACLES DO HAPPEN - USING RDI

This story consists of excerpts from a diary reproduced with kind permission of the family involved. Names have been changed.

John got diagnosed with an Autism Spectrum Disorder at the age of two. John has had several forms of treatment during the last two years and continues to get treatment. This is John’s recovery story. He is one of many children who get treated for Autism Spectrum Disorder. There are many options of intervention. We have chosen interventions which suited John as well as our family situation, such as Relationship Development Intervention (RDI). I hope this story will help others who face similar challenges.

Until two years ago I was reading every possible book on babies and how to deal with challenges. None of the books ever would tell me how to deal with my child. When my husband would take care of John on the weekend I would go to the bookstore and read. After two years of reading I finally made it to the section of children with special needs. I finally started to read a book about Sensory Integration Dysfunction. At the same time I started doing research at the internet about that topic. I learned about tactile defensiveness and the Wilbarger brushing protocol where you brush your child with a little brush every two hours. At that time John could not not tolerate any touch and he would start screaming if somebody would unexpectedly touched him.

During that time I also contacted our early intervention service mostly about John’s lack of language. We ended up getting Occupational Therapy and I found somebody who could me how to brush John. His tactile defensiveness decreased over the next two weeks and he cried a lot less overall. This was a huge relieve and life got a lot easier from that point. I developed a sensory diet for John which included a lot rice play, running, swinging, brushing, sand play etc. One thing we did I would just take him to a public park and let him run after the pigeons. He loved it. I have never seen him so happy in his whole life like running after those birds.

At the same time I noticed he was withdrawn, he couldn't care less if I was standing there. He would never share anything with me or invite me to run with him. Every day all summer long he would run 1 or 2 hours after the pigeons often twice a day. By then I was already reading autism books in the books store. I tried some of the techniques explained and they worked better with John than anything else I had tried. I started reading more and more books about autism. Until I read one case what described John. The child sounded just like him.The mom was describing that her child had no interest in playing with other kids at playgroups instead he wanted to be on his mother’s lap the whole time. The boy would also cried a great deal.

The same week I asked the social worker of early intervention if John could have autism. She encouraged be to go for the diagnosis. I am still thankful to her for that. We got the diagnosis, but I didn't really believe that John had autism until I read Dr Gutstein’s books (RDI) that John had autism. I read "Solving the Relationship Puzzle". While I was reading about core symptoms of autism like lack of social referencing and lack of experience sharing. I just cried and cried. John was not seeking me out in uncertain situations and he did not share with me. He didn't care what I was thinking about the world and would not share his world with me. He had never done a simple "look at that mom!" My child finally stopped crying just to have autism. I never realized what was missing, all I wanted was that he was happy. Now he was more happy but we didn't have a relationship based on sharing and trust. I was doing things like carrying him around, watching him running and pushing him in the swing but he didn't care if I was in the room unless he was anxious or he wanted something.

Home schooling

I am home schooling John. I don't know if I mentioned already that John just turned four. We have been decorating John’s room since one week. It has been such a joyful and exciting experience. In the last two years his room looked more like a prison room than a child's room. Because of John’s autism and RDI we needed to minimize objects, so we basically kept his room empty. We as his parents were the most interesting for John in an empty room. An empty room is also great because little changes are very obvious. I used to change the place where the lamp was or I put a different poster on wall, or changed the location of the poster on the wall. I also played around with the closet a lot, like putting a different stuffed animal in the closet every night. I used that for anticipation. We would enter the room together (open the door very slowly) and look at each other, anticipating what surprise we might see. John loved it.

starting rdi

I remember the day when we started RDI and I emptied his room. I had so many dreams for my child including how the room would be decorated for my sweet boy. I took everything out, it was very difficult for me. Again it felt like my dreams were taken away. Almost two years later I felt it was time to decorate John room again. We have been doing so much artwork lately that we just had to do something with it. Of course John is also ready for such an exciting change. We made a huge "quilt" of all our artwork on one wall, it looks so great. John has been very much into "cars" (the characters out of the Cars movie) lately. We implemented this topic for his room since it is so much John. We bought a bunch of paper plates with the characters on it and John cut them out and we put all of them on a poster.

does rdi work for everyone?

Is RDI for you? I don't know. I know a lot of people they are very happy with their ABA program or with the school their child is going too. Just yesterday I had a great conversation with a friend who's son is in an integrated classroom. She was so happy about her son's progress in school. She said the staff is so great and her son loves it and he made a lot of progress within a short period of time. I am so happy for her. She also started RDI in addition to a lot of other therapy he gets in school.

Then I told her about John and how much I am thinking he would not be happy in school setting and for him RDI will be the only intervention besides biomedical ones at that point. My friend and I are so happy for each other that we found a lifestyle for our families that works. We do different things but we are both happy.
I also noticed that a lot of people switching from ABA to RDI and they are very happy with the choice. As you know I am happy with what we are doing now. But that's me. I hope you find your way too...

coping with regressions

Today I though a lot about John’s regressions he had over time. Regressions are the worst times for me. When John is regressing I am not a happy camper, mostly I am angry that after two years of working almost every waking hour on John’s treatment that I go backwards. I doubt myself, I don't want to do this anymore, why do I work so hard I wonder. Then I get depressed for a while. Every time I am going through the whole grieving stages all over again. It’s painful. And nobody can help, I have to go through this. I can’t distract myself and I am thinking constantly about why he regressing and how I can help him. I don't like to see people and I don't like to talk to them. And most of all I don't like to take a break. I just can’t.

In regression times, I am just so sad that I am not a good company. I even think about to enroll John in school because I can’t see how I can help him anymore. After I went on for a while like this, I start feeling better. I just start at the bottom again. Emotion sharing, in times like that we are back to stage 1. At least I know how to work on that. RDI has been so helpful in those times since I know what to do, I don't need to think as much. After a while I even forget about the regression, we just keep working, adding in the news objectives from the higher stage.

early days with rdi

"This little piggy goes to the market" was one of our stage 1 activities. I would change the words a lot, to get John to anticipate what comes next. I would say for example this little piggy ....(pause) is going to tickle you and then tickle John or this little piggy is going to...... kiss you etc. We had lots of fun with that.

Right from the beginning we started to introduce "little variations" or "little challenges" . Those had so be really small at the beginning to keep it productive meaning that John could handle the changes and feel competent. John was very rigid when we started RDI and store or playground visits were impossible. We started putting little toys I know he would like at the dinner table or change songs he liked in a very funny way. I remember I would laugh and pretend that was the funniest thing ever . At the beginning John would look confused. But I kept just laughing how silly a little car on your plate etc. After a while John got the joke.

I would constantly raising the bar regarding changing things. I also would change is room by putting a poster up and putting that same poster the next day into the bathroom. For example I would put his jacket on me instead of John . we would crawl instead of walk, I would change my hair and I would change dishes constantly, I would change the room (one day living room, next day bedroom etc) where I would dress John, I would draw different things on windows and mirrors and a lot more. All those "changes" we would anticipate together. For example I would carry him out of the bathroom then pause, share the moment of anticipation where we might go today and then enter the bedroom and then laugh together. By doing this all the time he got very flexible within 2 months and he started to look forward to something new instead of screaming.

ups and downs

We did our first Dyad (matched peer partners working together, stage 8) yesterday. It went really well. I was so anxious about if the boys would accept me as a guide. Yes they did , and they did great. I thought about all the activities up front and prepared everything. I kept it very simple and very short. They jumped into the beanbags, cleaned the house, crashed cars, drummed and screamed together. They had a lot of fun. At this point we are only coordinating. I kept activities very short so that they wouldn't start add variations.

Today John is still a little sick. He was inflexible today and quite whiny. He also again has a leaky gut probably from the stomach virus he had. I knew it right away in the morning. The first thing he did was counting. He also looked at the cracks in wooden floors quite a bit. Here we are again moving backwards. I had trouble giving him supplements 2 days ago since he kept vomiting everything out what he ate. He still was eager to have play date with his friend. John called his friend and asked him to play. Very neat.

John has now two Dyad partners, Why? Because we are trying things out. And I am the one who needs to learn how to run a Dyad. This is John’s other Dyad partner. He was at our place for the first time and his mom came to. I didn't do any Dyad activities yet , I just wanted them to feel comfortable with each other and see. I spend most of the time observing the 3-year-old to get some ideas about Dyad activities. I hope we can start the next time, when he will come over. We basically just did a play date. It went great. They played together and did their own games and added their own variations. I was not expecting that at all. They had one play date before at the boy’s house where they did not play together. So I was really surprised. I think we have a great start. I took lots of pictures so I will make a memory book (where I put the pictures in) for both of them to remember the fun they had together.

Today John was sick. He was so sweet though. He used to cry for hours when he was sick, there was nothing you could do for him. Today he fell a lot because he was tired, he also bumped his head. He cried so little and when he did I could comfort him. I would carry or hold him and he would just put his head on my shoulder. He usually would get really angry when I hold him. He would wiggle out of my arms and trying to tell me what to do. What a difference today. It the most rewarding feeling for me to pick up my child and comfort him. And he takes it all in. So sweet. I love him so much.

John was doing great today. He was so "there". He stimms a little, but he is very present. I love those days, his eye contact is perfect. He looks at me the whole time while he is talking, I can’t get enough, its great. In RDI people don't care about eye contact. In RDI, referencing is the important point. Can the child borrow somebody else's perspective or point of you? An example would be I would hide a teddy under 1 of 3 beanbags. John can find out under which beanbag the teddy is just by looking at me (when I look at the beanbag). John gains information by looking at me. This is one example of referencing. A child can have perfect eye contact and fail the task I was just describing. John mastered that kind of referencing. His eye contact has been poor, I would say. Today I just noticed how much he looked at me. In a lot of the photos he is actually looking at me, but those all moments of referencing or emotion sharing, or moments of uncertainty.

Today was a great day. John gets collaboration and starts loving it. One of the things we do a lot is going to the coffee store. I love to get my coffee. I bring a bunch of games. There are also plenty of other RDI possibilities. For example: We both like to pour a different kind of coffee. John came up the compromise, to pour both coffee types in the cup. Great!!! Today was one of those special days. We went to Starbucks, I brought some pens, a balloon and some stickers. John wanted to play balloon, I wanted to draw. John came up with the compromise that we would draw on the balloon. After that John wanted to play with the balloon and I wanted to play catch. So we played catch with the balloon in Starbucks. I was convinced that the staff would kick us out soon. To my surprise the staff member and even the customer would join in. So we all played balloon catch for a little while and had "RDI" fun. I thought it was great. I wish I had set up the camera.

For me its not easy to do RDI lifestyle all the time. We are doing RDI since almost 2 years. Still sometimes I get frustrated because "I have to get things done". Like today with the cooking. Its just me and John but I need to cook lots of veggies, potatoes beef and I need to make some humus. Since its the weekend and my husband is home, we like to eat a "nice meal". I also need to set the table and pour supps. I am busy and yes I want it done in a certain way. I am starving.

Today we had another of those big moments. John and I went to the park today. We drove and he could see his friend and some other boys playing. He told me that he wanted to swing. We got out of the car and John started running toward the swings, but instead running to the swings he would run the group of boys and play with them. It was the first time he has played with a group of boys at the playground. I couldn’t believe it. He was just one of the other children and playing....How great is that?

John still has gut issues. there is so much more to do with his gut. I am rotating some probiotics now. He has been dressing himself. He doesn't get frustrated at all. I just give him his clothes and he puts it on. It’s amazing.

the importance of play in rdi

You might have noticed that "we play" a lot. Believe me when we started RDI I only did housework or some lifestyle activities. I did not like to play. At that point John did not feel competent at any kind of play/game situation in a Master/Apprentice situation. The time when John started to really enjoy any kind of game started at stage 5. So we did a lot of housework the first year. Lots of cooking, baking , cleaning, shopping and laundry. Things are very different now. We spend a lot of time playing. And I like it, it’s really fun to play with John. There are so many great things we discovered, like the trampoline, the hoppers, all sorts of board games, card games, chasing games, ball games, pretended play, dress up games, tent games, building games, flashlight games, music games and many more. I never though I would like it, but it’s really great.

BIG NEWS: My husband just told me that John asked 2 kids outside if they would like to play. He has never played with them. One of them he has never seen before!!!!!!!!!! I am so happy. I thought this day would never come. Playing with a familiar peer is great but asking a child he doesn't know is even more amazing. Woooohooo.

beginning a new stage of rdi

Today we moved to stage 8 (collaboration). The beginning of a stage is always a challenge. We both have to figure out what the stage is all about. There is usually some frustration for both of us. At the beginning I need to learn how to frame an objective that John understands his role in it. Even I get great advice from my consultant, this is always trial and error.

Lucky by now we have collected "enough good memories" so we will be fine, even a day or two are a bit chaotic. Still this is exhausting and hard work for me since it’s not easy to see John struggling because I haven't figured out how to frame a new objective. By the afternoon I figured it out and we were able to do a nice simple collaboration. Of course I still had to model everything. That's usually what I am doing the first days.

The activity is coloring blocks. Today I brought some wooden small colorless blocks, sticker, pens and oil pastel. I put everything out on the table. I explain to John we each need to figure out what the other likes and then we need to come up with something what makes us both happy. The first part is easy (just like stage 7). John likes the pens, I like the sticker. Then I model for him a compromise (verbally). We end up that John colors a block and after he is done I put a sticker on top of the same block. We both are happy. I picked some stickers he would have liked. At the beginning I need to set the bar low. I probably need to model for a while since to come up with the compromise will be a challenge for John.

Today I talked to my RDI-consultant. She is the one who guides us through RDI. I could never have made that much progress without her. We usually send her two videotapes a month and discuss how to move from there on the phone. Now we are working on communicating for preferences. We worked so hard today. Basically John needs to find out if I like what we are just about to play. We do this verbally. He would just ask me if I like to go to the swing, if I don't like it, he needs to pick something else. This is quite hard for him, so I spend pretty much all day modeling for him what he is supposed to do. On top of it I need to keep it super fun. When it was his turn I barely added any uncertainty yet, meaning I pretty much liked it the first time he was suggesting something. When he gets more competent I will increase uncertainty. Then sometimes I will not like what he is suggesting.

Today I feel we finally mastered Regulation based on Feedback, when John does something annoying to me that he needs to stop. Instead of giving him a frown I really look seriously at him, or go into my calming chair where I usually go when I am upset. It works great. With a frown John would just think that we would do a game and he would annoy more frequently. He was such an angel today, even without any time outs. This is great. We had quite some fun at the grocery store today. We pretended our cart was a race car, so we would do the fastest shopping ever. On our way through the store we needed to find out what the other one likes to buy before putting it in the shopping card.

a letter to my son

I found a letter I wrote when John was 19 months, I was describing the way I felt:"today I am writing about my experience being a mom. Everyday is so challenging. Every day I have so many moments where I have to be strong. I have to be stronger than the day before. I do like to be a loving mother. Of course I love him. I wish I wouldn't be so sad because he is so sad, so frustrated, he seems in pain. They call him here (in America) a ‘high need baby’, he cries and cries, some days all day and he calls me mama, mama. He cries and I pick him up. I feel helpless, I cant give him any comfort...." At that point I didn't know he has autism.

taking responsibility for problems

The new objective (stage 8) is just so much fun. And John starts to love it already. Today I "really" spilled my whole coffee at the coffee store all over our table (lucky it was not hot). It was no problem for John. He actually laughed and said now we have a big mess. More and more he takes responsibility for problems. I would make a lot of mistakes and he would "fix" the problem. It’s so fun. I drop my wallet, I hold the book upside down, during a card game all the cards fall on the floor.

John also started fixing his own mistakes more and more. Soon I will get over to "messing” a project up, which we made together. I probably start with something we have never done before, but still easy to do. Even this objective is fun – it’s not an easy one to master. I am so curious when I "break" something he made if he can handle that and even take responsibility for it (come up with a solution to fix it). When I write ‘messing it up’ or ‘breaking’, it cannot be on purpose, it’s a mistake I made. It’s hard to imagine at that point, but very exciting. And when you think, with kids it happens a lot when they are not that careful. There have been situations where John was crying when his friends changed something he made. He was not able to change it back or come up with something else.

how to make progress & keep your sanity

I was thinking about what were the most important things I needed to know to help John to keep making progress and keep my sanity. I think number one is that every child is different, when I read on the web about somebody else's experience I needed to remind myself that child was not mine. What worked for him/her may not work for John. Other children may make faster or slower progress, their bodies and their environments are different, their obstacles are different. Their personalities are different. Resources vary a lot from parents to parents, from town to town, from state to state. Some kids are the only child, others have siblings etc . I also try to be open about other treatments beyond RDI. I met countless people who have done great work with their kids no matter what treatment they have chosen. I think it’s a great thing to have options.

Number 2 is that other people don't know what I need. The most hurtful advice has been "he needs to go to school, you need a break”. For many parents that might be a good thing, but for me it isn't. I don't say to other parents "you need to stay home and home school your child".

Number 3 is that I can’t change other people. How nice would it be if my husband and my relatives would learn more about RDI, maybe even go to a 2 day workshop. How nice would it be if my husband would "believe" that Amy Yasko knows what she is doing (there is no scientific proof regarding Amy Yaskos protocol.) Yes it would be great, and wouldn't it be great that every child would get his needs met like John’s needs are at the time. It’s fantasy, it’s a wish. I spend many hours thinking and RAGING about it . About 4 months ago I stopped wanting to change things, thanks to my husband’s uncle and the many hours we spend on the phone talking. I am OK now. I am home with my child , I can home school him and I determine the treatments. My husband is very much involved in his son’s life and they have a great relationship. My husband is the breadmaker for the family, that's huge. He supports me doing RDI and does a lot of RDI games what helps generalize old stages. He is not thrilled with the Amy Yasko protocol, but he agreed to it because he knows it makes me happy.

Number 4 I can’t do a 100% job. I can’t do a 100% RDI lifestyle. Not all our interactions are RDI. It’s OK if most of them are. I allow myself some imperatives or mistakes. I can’t do the GFCF diet 100%. I can’t do Yasko 100%. I am OK. I try hard to be OK, I am still learning since I feel guilty easily.

is rdi easy?

I was thinking a lot about if RDI has been easy for us. No it hasn't. At the beginning RDI felt very unnatural to me. John was never that "go with the flow kid" At the beginning I also could not just do the lifestyle. I spend a lot of time thinking about activities and how to frame them. It involved a lot of trial and error on my side and a lot of "I don't want to do this" on John’s side.

Here an example about playing ball. John always loved balls, so I really wanted them part of our RDI life. He usually would just throw the ball on the floor or in the air and laugh. He always wanted us be be close by but couldn’t do any back and forth. His enjoyment was the object not the interaction with us. I always said “John plays alone but not by himself”. He loved the ball game so much that he would get a big meltdown if I wouldn't bring one along or if I would try to do a back and forth. It was so bad that even one day I called my consultant. This still happened at stage 2.

One day John saw a ball he really liked and I bought it and I told him this is our toy. Mama likes to play with that too. I only got the ball out to have an interaction, I started out with pausing before throwing the ball to him. After I throw the ball to him, he would run away with it and throw it up. I told him that it was my turn now with the ball and he had huge meltdowns. After that I put the ball away. Over months, slowly he would throw the ball back and forth and enjoy it if I would do it in a silly way. We would keep this very short. Slowly over a year and longer he got more and more competent in back and forth that we play endless variations of ball games, like golf, basketballs, with bats, baseball bats, beach balls, soccer balls, football etc. It’s amazing, he can do back and forth for long periods of time now. It was so worth it. But it was not easy and not quick, lots of work. I just thought it was worth it because he loves balls so much we could get so much RDI out of them.

Autism - cures or acceptance?

I saw an interesting video on U-tube today about autism and acceptance instead of cure or change. I understood that acceptance and acknowledging adults and children is emphasized instead of changing or curing people with autism . One example was that we should teach our NT children in school to celebrate differences instead of changing autistic kids into normal.

For us I don't see John so much as an individual with certain traits. I see us always in a relationship. For me its not so much celebrating John’s difference to other kids its more about what can I teach him today looking at him as a person who has a certain confidence level in different areas. Who he is and what he can do determines more where I set the bar for the difficulty of the task. We are in a Master Apprenticeship (This term might have changed in RDI). That is very rewarding for both of us. Being in a Master-apprentice relationship makes it possible that John can learn things , he is not good at naturally. RDI is changing him but not curing him. It’s working for us.

How much should you spend on interventions?

Lately I thought a lot about how much people spend for treatment for their autistic children. From what I am reading there is a huge variety. Some people sold their house for money others only use IEP service. If I didn't have my husband I would be probably belong to the first group, we don't even own a house but I probably would have taken a huge loan, by now we would be probably be homeless and begging for money.

Thanks to my husband we have a certain budget which we use for treatment, and I need to make a choice what I do with it. It’s actually much smaller what some people would think, given the kind of treatment we are doing. Often I was mad about the lack of money, now I am actually glad about the way we are living and that we are also able to live in a "safe neighborhood". John is doing great here and the benefit might be as big as we would use some OT for example. I think a functional family is more important than more treatment.

Click here to go to the home page of this website: www.autism-help.org
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