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
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
At the same time I noticed he was withdrawn, he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.
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
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
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
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
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
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
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
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
to go to read more about Relationship Development Intervention
Copyright held by the original author. Click here to visit her blog