Tuesday, December 30, 2008

Finding Balance

As the holidays are winding down, I've been reflecting on the past month, and generally getting down on myself for not being more "on-top" of things. My plan was to work with my son intensively during his school break, while keeping up with my family and work obligations, still finding time for myself somewhere along the way. No matter how much I get done, it never seems to be enough.

I know that other RDI parents are feeling this same pressure. How do you find time to work with your child, while still giving your other children the time they deserve, never mind your spouse or significant other, and extended family and friends? And how to you integrate this with the pressures of daily life, especially in these rather frightening times with the flagging economy.

I know that when I am tense, it affects my interactions with both of my children. I find myself getting short-tempered with my son, and he is less able to rise to the challenges I am working on helping him to master. Like all other RDI parents, I am familiar with the feeling of trying to squeeze in some "taping time", in the midst of other obligations. I know the frustration of trying to capture that perfect moment on tape, which somehow rarely seems to happen when the camera is rolling.

Unfortunately, I don't have any easy answers. In my work as an RDI consultant, I talk to families about filling out stress management plans, but real life has a way of stepping in. Consistency is important, but it is also important to take a step back once in a while, and to admit that we are doing the best that we can.

Our children learn by watching us. If they see us putting pressure on ourselves, they will do the same, which ultimately takes away from the joy and connection that we are working so hard to establish. I think it is important that we, as parents, learn to give ourselves a break. All challenges are here for us to learn and grow, but that can't happen if we are too tense to notice.

As the new year begins, I would like to propose that RDI parents, and all parents raising special-needs children, make self-care a priority. I find that my son's progress is enhanced when I am relaxed, and ironically, less focused on the end product of a given interaction. When I am feeling uptight, he is more likely to shut down. Building resilience in our children is one of RDI's long-term goals, and the best way to do this is to model it. Let our children see us taking time out for simple pleasures, and letting go of the pressure of daily life for a while. We generally can't change the world, but we can change our minds about the world. Take care, and happy new year.

Thursday, December 18, 2008

The Holidays

This is a crazy time of year, especially for families raising a child with autism. The holidays bring family gatherings and changes in routines that can be extremely difficult for people with autism. The current economic crisis is another source of stress for many families this year.

The holidays can be an exciting time for families who have made some progress in their RDI program. There are many opportunities for guided participation, from decorating the tree to wrapping presents to cooking. It can also be a time of celebration, when you see your child responding to family traditions differently than in past years. There are many opportunities for guided participation, from decorating the tree to shopping for gifts, and many opportunities for positive episodic memory.

The holidays can also be a stressful time, especially for families who are just getting started. The social gatherings and changes in routine can be stressful for our children, and for us. This is often a difficult time to work on remediation goals. It can also be discouraging when changes we are seeing at home are not as apparent with extended family and friends.

As a veteran RDI parent, let me offer this encouragement - it will get better. The first year is often the hardest. If you hang in there and keep on working through the year, your next holiday season will be very different.

This is a time for many families to slow down and simplify things as much as possible. Try not to over-stress yourself and your child. Take things one step at a time. When we are stressed out, we cannot guide our children. They will sense our stress, which will only add to their own sense of unease. They will not be able to learn if they are tense and upset.

Try to let go of your expectations, and just enjoy the season as it unfolds. Take some time for yourself. Don't worry if your house doesn't look perfect, or if you don't have time to send out cards this year. Let go of anything that does not bring you enjoyment. Take a breath. Enjoy your holidays.

Sunday, December 14, 2008

Troubleshooting for Beginners

Setting the stage for co-regulation is one of the most challenging aspects of getting started in RDI®. The following questions are designed to help families “troubleshoot” common obstacles to setting up a co-regulatory interaction with their child. These questions are designed to help families reflect on common mistakes, and are not intended as a substitute for the advice of an RDI® Program Certified Consultant.

1. Are the roles clearly defined?

Prior to starting a co-regulatory pattern, it is important to clearly define roles for each participant.

2. Does the child understand his role?

Never assume that your child understands his role, even if it seems very simple and clear to you. Show the child what you want him to do, using strategies suggested by your consultant.

3. Is the child capable of fulfilling her role?

Choose roles based on your child’s capabilities, not on what you think your child “should” be able to do, or what other children of the same age can do. The goal of these early, co-regulatory experiences is to allow your child to feel competent in an area which is extremely challenging – namely engaging in a back and forth “dance” of co-regulation with their partner. If your child’s role is overly challenging, he will be unable to focus on the interaction with you, and he will not experience the feeling of competence that is crucial for the development of trust and resilience.

4. Is the environment too distracting?

Are you trying to engage your child while she is watching a favorite video or engaged in a preferred activity? Are you trying to set up co-regulation in a loud, busy environment that is overwhelming to your child? These are challenges for a higher stage. For now, work on setting up co-regulation in a familiar, distraction-free environment.

5. Are you using too much verbal language?

Too much verbal communication can be an obstacle for both parent and child at this stage. Many children have difficulty processing verbal communication. If you are trying to “explain” the child’s role, he may be unable to process all of your words, which will lead him to withdraw from the interaction in one way or another. Other children are extremely verbal, and will use their words to try to control the interaction. Since 80% of all communication is nonverbal, it is important to give our children ample opportunity to practice both reading and using nonverbal cues.

6. Are you allowing the child to control the interaction?

Children who do not feel competent participating in a dynamic, co-regulated interaction often cope by attempting to control the interaction, thus making it static and “un-threatening”. These children will generally resist your initial attempts to establish co-regulation. It is important to work through this initial resistance, even if your child is not happy about participating. Your consultant will give you specific strategies for working through this initial resistance, which will decrease once your child is feeling more competent.

7. Are you trying to “get” a specific response from the child?

Co-regulation is like a dance, in which each partner adjusts to the other. It is not a static system in which there is a “right” or “wrong” answer. In the beginning stages of RDI®, your child is learning how to read and respond to your cues, which is why it is important for you to be in the lead at this point. However, that does not mean that your child is expected to “comply” with your set ideas of how the interaction is supposed to go. It is important to clarify the roles and limits of the interaction prior to beginning, but the direction the interaction takes may vary within those limits. If this is challenging for you, please ask your consultant for guidance.

8. Is the child emotionally/physically ready to work on remediation?

Remediation is challenging for your child. Think about a time when you were learning something new that was challenging for you. How receptive would you have been if you’d been tired/hungry/stressed-out? Choose times when your child is fresh and ready to learn.

9. Are you adding simple variations (“just noticeable differences”) to successful co-regulatory patterns?

Once the initial pattern is established, you want to make sure it stays dynamic by adding small, “just-noticeable” differences. These variations can include, but are not limited to, changes in pacing, distance, sounds, environment, roles, materials, etc. Ask your consultant to help you in choosing variations that are appropriate for your child.

10. Are you allowing the child time to process the changes when you are adding variations?

When you add a variation, you are making the interaction more dynamic. This is challenging for most children who are starting RDI®. Since the primary goal of RDI® is to help our children feel successful in dynamic systems, we need to spotlight these moments and make sure our children are processing the changes. Pausing directly prior to the variation gives your child a cue that something different is about to happen, and pausing after gives your child time to think about the change and how she will respond to it. This is the essence of dynamic interactions, and is essential practice for your child.

11. Are you returning to prior successful frameworks when the variations are met with extreme resistance?

Not all variations are met with thoughtfulness or enjoyment. If your child becomes extremely distressed when you introduce a new variation, pause and return to the previous pattern. Several things could be happening here. It could be that the initial pattern is not established in your child’s mind. Or it could be that the variation itself was simply too challenging. Or, it could just be that your child is having a bad day. If your child is consistently shutting down when you add variations, ask your consultant for guidance.

12. Are you slowing down and waiting for the child to repair breakdowns?

It is inevitable that co-regulation will break down at some point. When this occurs, our first inclination is to step in and take some action to “bring the child back”. It is important to give your child opportunities to practice repairing these breakdowns. When your co-regulatory interaction breaks down, give your child adequate time to think about the breakdown and to take some action to repair it. Some consultants recommend counting to 45 slowly in your head while you wait. If your child tries to leave, or does not repair the interaction, then use whatever strategies your consultant recommends. Eventually, she will take some action to repair the interaction.

13. Are you using declarative, experience-sharing communication?

This is critical for success in RDI®. Monitor yourself when you are communicating with your child, not only during co-regulatory activities, but throughout the day as well. Strive for a ratio of 80% declarative/20% imperative communication.
These are only some of the potential obstacles families face when working on establishing a system of guided participation with their child. This document certainly will not cover all obstacles, and it is important to seek the advice of your consultant if you are confused or unable to determine what is causing the problem.

The main purpose of this document is to offer families a “cheat-sheet” of potential obstacles as they reflect on their work with their child. As parents, we want to build competence in our children, and as consultants, we want to build competence in the parents who we work with. It is my hope that this will be a useful resource for parents in spotting potential obstacles to co-regulation and helping them to make the most of their consultation sessions.

Wednesday, November 19, 2008

I'm off to SCERTS training

Hello all! I'd like to apologize for the slow addition of new material to my blog. I've been rather busy lately, and there are some exciting developments on the horizon.

Tomorrow I am off to Milwaukee to learn more about the SCERTS program. SCERTS stands for Social Communication, Emotional Regulation, and Transactional Support. It is my understanding that this program is similar to RDI in theory and strategies, but without the strict protocol requirements. It is my hope that the SCERTS model will offer an alternative for families who are unable to afford a full RDI program at this time, but who still want to treat their child's core deficits of autism.

I will be posting more information here next week. Have a wonderful holiday!

Monday, November 10, 2008

Indirect Prompts

In RDI®, the goal is co-regulation, not compliance. Direct prompts foster compliance, and do not teach a child how to think. By using indirect prompts, you are offering your child an opportunity to practice dynamic thinking. It may take a little bit longer to get things done, but in the long run, your child’s cognitive growth will be worth it.

Remember, it’s always better to show than to tell. Use gestures and nonverbal prompts whenever possible. For those moments when you really need to say something, try to word it indirectly. Pair it with a gesture or other nonverbal cue if you’re concerned that your child won’t understand, and make sure you give your child extra processing time.

Direct Prompts
Pick that up.
Come here.
Put this in the box.
Eat your dinner.
Push in your chair.
Put on your coat.
Brush your teeth.
Give me that.
Stop that!

Indirect Prompts
That doesn't belong there.
I need your help.
That goes over there.
Your food is getting cold.
You're too far.
Here is your toothbrush.
It's cold outside.
I like that one.
I don't like it when you do that.

These are just a few examples of ways to “prompt” our children without actually prompting them. Of course, if your child is running into traffic, use a direct prompt and whatever means necessary to keep him or her safe. However, in most situations, it is possible to use indirect prompts. Try to think of ways to re-word other prompts in ways that offer your child opportunities for thinking, rather than blind obedience.

Thursday, November 6, 2008

More Than Words: Broadband Communication

Communication is not always verbal. Think of all the ways you can communicate without ever saying a word - gestures, facial expressions, body language. It is possible to conduct full, back and forth conversations, without ever saying a word.

Also, consider how nonverbal cues can change the meaning of spoken words. A simple phrase, like "Nice shoes," can be taken literally. The person speaking may really like your shoes. However, subtle, or sometimes not-so-subtle nonverbal cues, such as a shift in facial expression, a change of voice tone, a roll of the eyes, can express the exact opposite meaning.

Communication is a mix of spoken words and nonverbal cues that combine to create meaning. It is well documented that individuals on the autism spectrum have difficulty reading nonverbal cues, and that they tend to take spoken words literally. This makes it difficult for them to read subtle social cues that the rest of us notice without having to think about it.

In typical development, nonverbal communication develops prior to speaking. Typically developing babies are experts at nonverbal communication long before they ever speak a word. Parents automatically slow down their movements and exaggerate their facial expressions and gestures when interacting with infants. During the first year of life, babies are interacting with their caregivers, learning what different facial expressions and gestures mean, and learning how to use them in order to communicate.

This cycle breaks down when a child has an autism spectrum disorder. There is a communication feedback loop that goes between parent and child, in which each partner is reading and responding to the cues of the other. When your child is on the autism spectrum, s/he can be overwhelmed by the same amount of stimulation that would be optimal for a typically developing baby. Many children with ASD respond by withdrawing. All babies will send withdrawl signals when they are overstimulated or tired, but children with ASD send them more often, as they become overstimulated more often. Parents feel that they must be doing something wrong, or that their child is rejecting them, when in fact, the child is simply overstimulated.

This is why it is so important to slow down in all of your interactions with your child. This includes verbal as well as non-verbal cues. Previous posts have discussed the importance of using fewer verbalizations, and of giving your child extra time to process your communication. It is also important to slow down and exaggerate your nonverbal cues.

This slowing down and exaggerating your nonverbal cues comes naturally when you are interacting with a baby. It takes more conscious effort with an older child, but the results are worth it. Here are some tips to help your child practice reading nonverbal cues.

1. Choose one nonverbal modality at a time: facial expressions, gestures, prosody, etc. Don't add a new one until your child is comfortable with the one you are currently working on.
2. Exaggerate and slow down your cues.
3. Make sure you give your child time to process your cues (the 45 second rule).
4. Respond to your child's verbal communication with nonverbal cues whenever possible.
5. Don't try to "get" your child to look at you. Whenever possible, wait for your child to look at you on his own.

If your child is not in the habit of looking at you, this can be difficult. However, it is important to resist the temptation to teach eye contact as a static skill. Doing so will teach your child to look at you when cued, but does not help your child to discover why it is important to look at you. By reducing verbal communication and increasing nonverbal communication, your child will learn that s/he needs to look at you to get important information in a natural fashion. This can be very challenging for parents, especially when your child expresses discomfort at your change in communication style. Be patient, with yourself and with your child. Over time, facial gazing and eye contact will increase naturally, and your child will learn to read nonverbal cues.

Wednesday, October 29, 2008

Changing Your Communication Style - Part 2

Declarative vs. Imperative Language

One of the first changes we as parents to make when starting an RDI program is to increase declarative communication with their child. Declarative communication is any communication that is designed to share your perceptions or experiences. It is often referred to as "experience-sharing communication". Declarative language requires no specific response.

Imperative language is any communication desgned to get a specific response. Any type of command or question with a "correct" answer is imperative.

Here are some examples:

Pick up your shoes.
Look at me.
What color is this?
What sound does this animal make?

I went to the store today.
I enjoyed that movie.
I hope it doesn't rain today.
I am looking forward to the holidays.

These are just a few examples.

In typical interactions, the ratio of declaratives/imperatives is 80%/20%. This ratio tends to be reversed when we have a child on the autism spectrum. Many behavioral therapies encourage parents to increase imperatives in order to "get" their child to say words. Asking a child to answer a question that you already know the answer to is not fostering communication. Your child may add a new word to his vocabulary, but he will not know how to use it for communicative purposes.

The true purpose of communication is to share your perceptions and experiences, and to learn about the perceptions and experiences of your partner. This can only take place through declarative, experience-sharing interactions.

At first, it can seem scary to reduce imperatives, as this may be the only way you've ever felt that your child has really interacted with you. Have faith, if you practice using declaratives consistently, and give your child adequate time to process your communication, s/he will eventually respond. By having patience and practicing this faithfully, you will be giving your child practice at communicating in a natural fashion.

Here are some strategies for learning to change your communication style:

1. Keep an index card or small notebook with you. Make two columns, one for imperatives and one for declaratives. Draw a tally mark under the appropriate column every time you interact with your child. You will probably be surprised by the number of imperatives you are using on a regular basis.

2. Start by choosing a specific time of day to focus on using only declarative communication. Choose a time when you and your child will be feeling relatively unpressured (Don't try to get through the morning before-school routine without using imperatives, for example). Some families take a daily walk together, or spend time hanging out in the backyard.

3. As you start to feel more comfortable at your appointed time, expand it into other parts of the day.

4. Practice declarative, experience-sharing communication with your partner or other children. This will give you an idea of what it feels like in typical interactions, and show you what your ultimate goal is with your child.

Sunday, October 19, 2008

Changing Your Communication Style - Part 1

Changing your communication style is one of the most important steps you can take. It is also one of the most difficult. Communication deficits are common in autism spectrum disorders. This is an especially sensitive area for many parents, especially those who have children who are nonverbal or have limited verbal ability.

One thing you must understand: teaching your child more words will not cure their autism. In fact, teaching words without the foundations of communication is like teaching algebra to someone who never learned how to add. They may be able to repeat specific problems that they’ve memorized, but they will not be able to use it in any functional manner.

Most traditional autism therapies are geared towards increasing your child’s vocabulary. As parents, we are given strategies designed to “get” words from our children. Strategies like fill in the blanks or social scripts only reinforce the instrumental reasons for communication, and will not strengthen your child’s ability to communication in a truly connected way.

Most of the RDI® communication strategies will feel strange at first. Many parents struggle with changing habits they’ve cultivated over years, using strategies they’ve learned from experts. It is normal to go through a period of discomfort when you are changing long-term habits, so go easy on yourself. However, it is important to realize that you came to RDI® for a reason. If your prior habits were getting the results you wanted, there would be no need for you to seek out other therapies. Doing what you’ve always done will get you what you’ve always got. If you want different results, you must use different strategies.

The good news is that changing your communication habits will garner amazing results, if you make a conscious effort to alter your habits and give it enough time. Don’t try to do them all at once. Start with one, and add new ones as you become more comfortable.

Model slow, deliberate communication

Many parents of children on the autism spectrum develop a habit of talking “at” their children. I believe this can develop for several reasons. Some parents believe it will help their child to develop language. Some are trying to fill in the silence. Others are trying to “get” their child to interact with them. Some are just talkative by nature.

Conventional baby and toddler books often advise parents to narrate their activities for their babies, in order to help them develop language. This works fine, for typically developing children. Children who are on the autism spectrum often have difficulty processing verbal communication. Many need extra time to process what is said to them. Here is an example:

Parent: “Bobby, we are going to grandma’s house. You need to put on your shoes and get your coat. Remember to bring your favorite video and your juice box.”
Child: (still trying to process “we are going to grandma’s house”). Is unable to keep up with the stream of words. Gives up trying and zones out.

When we talk at our children constantly, they cannot keep up with what we are saying. It becomes too challenging for them, so they give up. People often say that children on the spectrum do not listen. Children on the spectrum will listen, when the communication is presented in a way they can process and understand. Exposing them to more words is like raising the volume of your voice when you are speaking to someone who does not speak your language: it will not help because it is not addressing the real problem.

Here are some tips for using slow, deliberate communication:

1. Use fewer words. Think about what you want to communicate, then use simple, straightforward language.
2. Get comfortable with silences. If necessary, count to 45 silently to give your child time to process what you’ve said.

Monday, October 13, 2008

Strategies for DIY

RDI has made a huge difference in my child's life, and for our entire family. We are fortunate to be able to afford the services of a quality RDI Consultant. Unfortunately, not all families are in this situation, especially in the current economy.

As an RDI Consultant, I recommend seeking the services of a qualified consultant, if you are able. For those families who are not in a position to do this, there are some strategies you can use. I will be going over them in general terms here, and will expand on these over the course of the next few weeks.

If you are new to RDI, I recommend choosing one strategy at a time. Don't try to do all of these things at once - it can be very overwhelming. Many of these strategies will feel strange at first. RDI is a developmental approach, and if you are used to behavioral interventions, some of these strategies will require you to change habits that you may have had for a very long time. This is not an easy process, so be patient with yourself. Also, don't feel discouraged if it takes time to see results. RDI is a long-term program that takes time and consistency. I like to compare it to starting a weight-loss program: the first day of your diet, it is unlikely that you will see any change. If you stick with it over time, however, the results will become apparent. This is how many of these strategies will work as well.

Again, this is just a basic overview of strategies you can start using on your own. I will be expanding on each of these over the coming weeks.

1. Spend unpressured time with your child every day. This would be time when you are simply "hanging out" together, with no demands. You are not trying to "get" your child to do anything, including interact. Instead, you are setting up opportunities for your child to interact with you, by being inviting, but not demanding. Don't try to compete with any of your child's special interests during this time: for example, if your child is obsessed with Thomas the Tank Engine, don't watch a Thomas video together. Your child will be distracted by the video. Try to keep objects, especially distracting objects, out of sight during this time. Many families spend this time doing simple things like taking a walk together, or sitting side by side on a porch swing. It's fine even if you are simply sitting side by side on the couch together for ten minutes. It is also okay to go into a room with your child and close the door. Your child does not have to "do" anything with you, but s/he does have to remain in the room with you during this time. If your child is very resistant, start slowly (start with five minutes and gradually add a few more minutes each day). Don't be discouraged if your child does not want to interact at first, remember, this is a process that will take time.

2. Increase declarative, experience-sharing communication. Reduce imperative communication. Declarative, experience sharing communication is any communication that is meant to share your ideas, feelings, or experiences. Imperative communication is any communication that requires a specific "right" answer, or that is making a demand. Typically, the ratio of declarative to imperative communication is 80/20, but this ratio tends to be reversed with families raising a child on the spectrum. Start by observing your communication sytle with your child. How often are you using imperative communication? You are probably using it more than you are aware. Becoming conscious of your communication style may not seem like a big step, but it is quite challenging for many parents. This is a very important step, however, and if you are consistent, you will be amazed at the results.

3. Decrease verbal communication. Often, parents raising a child on the autism spectrum tend to talk "at" their child, especially when there is a speech delay involved. This is generally counter-productive, as many individuals on the autism spectrum have difficulty processing verbal communication. Imagine that you are trying to interact with someone who speaks a foreign language. You understand some, but not much, of this language, and you are not at all fluent. You would have a much easier time understanding someone who spoke this language slowly, using fewer words, than you would if they spoke quickly and were more verbose. Eventually, you would likely give up trying to understand them, feeling as though it were hopeless. If you keep your verbal communication short and to the point, your child will have an easier time understanding you, and will be more likely to interact.

4. Get comfortable with "pauses". This strategy goes hand in hand with decreasing verbal communication. Once you have said what you need to say, stop speaking and wait at least 45 seconds. Individuals with ASD often need this extra time to process verbal communication. 45 seconds can seem like a very long pause, and it will feel uncomfortable at first, but if you are patient and consistent you will be surprised at how often your child will respond. However, don't be discouraged if your child does not respond right away, or every time. Have faith and continue practicing, and eventually you will see results.

5. Increase nonverbal communication. In typical development, babies master nonverbal communication prior to speaking. Nonverbal cues are a critical piece of typical communication, but individuals on the autism spectrum often have difficulty in this area. Consider how gestures, facial expression, tone of voice, and body language can affect the meaning of the spoken word, especially when there is irony, sarcasm, or humor involved, to name a few. By decreasing verbal communication, and increasing and exaggerating your nonverbal cues, you will give your child practice in reading, and eventually using nonverbal cues.

6. Start taping your interactions with your child. Even if you are not currently working with a consultant, reviewing video footage of your interactions will help you to work more effectively with your child. This will get you into the habit of taping. It will give your child a chance to get used to seeing the camera. Watching video footage of your interactions is a valuable tool for spotting things that you missed during the actual interaction. This is valuable information that can help you to see what is working and what is not. It is important to pay attention to what you are doing first, before worrying about what your child is or is not doing. Any changes in your child will be in response to what you are doing, so this is what you want to focus on.

These are some strategies that parents can start to work on right away. Remember to take it slowly. Choose one strategy to start with, and go from there. Be patient with yourself, and be patient with your child. Consistently practicing these strategies will get you off to a great start.

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!