RDI Community : autism, Rachelle Sheely

Tackling Autism

Carlotta Baird — Wed, 18 Nov 2009 15:52:00 GMT

The Tackling Autism Foundation (TAF) was founded by Scott (a former NFL offensive lineman) and Ashley Jackson to help reduce the cost of autism therapy for families. After their own son, Tyler, was diagnosed with ASD they noticed the extreme uncovered costs of full-time treatment. Scott and Ashley decided to help fill the void. Partnering with different treatment centers, TAF is able to provide valuable reductions in price for families in need. Active RDI parents, Scott and Ashley are helping pave the way for equal access to treatment for families!

Below is an interview by Hannah Gutstein detailing the family’s story as well as the inspiration for TAF!

Q: Tell me about your family.

Scott: In 2004 we had our son, Tyler. I was in my rookie year with the Tampa Bay Buccaneers. During my third season, I was picked up mid-season by the Texans. We lived in a hotel in Houston, Texas. Tyler was two and Ashley was pregnant with our second son Joel. Because this was a transitional time and Tyler was our first child, we didn’t start to notice anything really different about him until he was about 18 months and we realized he still wasn’t talking. Right away we put him in speech therapy, and that specialist recommended we do occupational therapy. At that time our physician and everyone around us reassured us that he was fine and that was nothing was wrong.

Ashley: When he still wasn’t talking at 24 months, as well as developing some behavioral issues, and I was five months pregnant with our second child we were still going back and forth between Florida and Houston. It was really during this critical time for Tyler that we should have been recognizing these things. But, everything was out of sorts so it wasn’t until 2007 when we had our second child, Joel, that we had finally settled down and went to see a pediatrician in Houston. That doctor referred us to a developmental pediatrician and Tyler was diagnosed with PDD/NOS. Initially we didn’t know what to do, and we started looking at our options. We enrolled him in an ABA program in Houston and we started to see significant improvements, although he was still screaming and occasionally vomiting which made it hard for us to do much of anything.

The following football season Scott was injured, which on the bright side meant we could all spend more time together. At the same time, Tyler had begun talking communicating and interacting and we decided he was ready to enroll at YMCA soccer. One day I was talking to a woman and it happened that her daughter had Autism. She began to tell me about a seminar she had just attended on RDI.

Together we went to the RDI seminar, and July marked the birth of our third child and exactly one year of RDI.

Scott and Ashley: With RDI we felt involved with our child’s life for the first time. Before we had struggled to connect with him, as well as dealing with other interventions telling us that we hadn’t acted quickly enough, and that after the first five years our child was doomed. With RDI it felt so much more natural for us, and for Tyler as well. He picked up on the fact that we weren’t imposing things on him; we were just treating him like our son.

Most of the time when we visit with our consultant, Melanie Smith, we spend 25% of the time talking about Tyler and the rest of the time we spend talking about parenting in general. We have three children, and we are all a family and it’s not fair to treat one child differently because the other children are going to see that. There are the same consequences for everybody, and we are always dealing with new obstacles. Recently, since Tyler was non-verbal for so long, he now he wants to talk it out and he wants to evaluate everything. It can be hard sometimes to tone him down sometimes and talk about what matters.

Q: What initially drew you to RDI?

Ashley: It was the first time that we participated in a therapy that was teaching us to parent our son. Most therapies tell you need an expert, but in RDI you can become an expert. You have the tools; RDI teaches you how to maximize these tools. It has given me a new approach to parenting.

Scott: We first met with Dr. Sheely before we went to the parent seminar. We were feeling so much anxiety and at the time we were also nervous about autism because we had heard all of these stories about kids regressing. Through RDI we learned to stop living in fear. We felt like we got the power back in our court, so to speak. Before we were relying so heavily on professionals.

Q: How was TAF conceived?

Ashley: We just felt that we had been blessed by Tyler’s therapy and his ABA had been fully covered by insurance. Through our own research and time spent talking to parents we heard many stories about how kids couldn’t afford therapy.

Scott: In January we launched TAF, with our first event a golf tournament to help the Threshold Center in Orlando. I played with the Buccaneers there and Ashley’s family also lives there. We found a lot of volunteers and people to give back. Our next event was here in Houston and we helped support a family through a dinner and an auction, that event was great because we were able to give back to a child

Q: What about the future of TAF?

Scott: We have been blown away by the response from individuals and corporations. We are hoping to grow so we can have an impact on more children’s lives. Our grants go directly to treatment centers and we ask they go strictly to people’s therapy costs. We have always been active in the community, and I participated in a lot of events where most of the money wasn’t going to actual families but instead to awareness and research which of course are really important. But until those things are figured out, we wanted to establish something where we could see exactly where the money was going. We have a motto that says – “While others look for a cure, we help families cope.” As parents to Tyler, we know what it takes raise an amazing child and it is our goal to help families just like ours.

We hope to set up scholarships in the future, but for the moment we write grants. So interested families need to contact the treatment centers that we are aligned with, parents can find a list of those centers at www.tacklingautism.org. We have found what really works for us and each child is so different that it is a personal decision that must be made by each family. We want to let parents know that there are resources out there for them. We hope TAF will substantially affect a lot of people.

Q: Future events?

Scott: In January we are having an event with Whole Foods. There are tours throughout the store, to help people shop for gluten free/casin free menu items. There will also be, cooking classes and menu items, give away items. It should be fun and educational for all of the families interested in it

We also have a program called “Time-Out-for-Two” where several restaurants have offered a night of fine dining so that parents can go out while we provide the childcare. Part of focusing on the family is having perspective on where your relationship fits. We not only want to knock down therapy costs but also be there to support families and provide hope. This experience has been a real educational process for us that we’ve enjoyed. It has made me look at myself differently and how I can be dynamic and flexible and how I’m co-regulating and what I’m doing. I've learned that and I wanted to teach that to my kids. Those are things I’ve taken away from RDI and it has helped the way I interpret the world and you can see a real change in my whole family.

Q: Any recent special stories you can recall about Tyler?

Ashley: The other day we told Tyler that Christmas was coming. He literally replayed how we spent the entire day last year. He knew every present he got. After that conversation we learned that we have to teach him that Christmas is an idea that it is more than the presents we give to each other, and every year he is not always going to get a bicycle and blocks and coloring books. Last year when we had a Christmas tree with lights and everything, we had forgotten that when he has a new experience and watches a new show he wants it to be that way always. We want to generalize this experience.

Scott: But his excitement is unbelievable, it is really infections with all the kids. Through RDI we have seen him start to understand his feelings instead of becoming emotionally deregulated and screaming. Today when I put him in timeout and I asked him how he was, he said “you made me so so sad.” It is monumental that Tyler can recognize and truly share his feelings and his emotions.

For further information on future events please go to: www.tacklingautism.org.

The RDI Program Goes Global: Mumbai India Workshop

Carlotta Baird — Fri, 23 Oct 2009 15:30:00 GMT

In just a few weeks, RDI will be going to Mumbai, India to deliver a 2-Day Workshop (November 21-22, 2009) to parents and professionals. In the spirit of our latest trek across the globe, Hannah Gutstein interviewed Kamini Lakhani, an RDI Program parent, RDI Program Consultant and the organizer for the event!

Q: Please introduce us to you, your family and your children.

A: My name is Kamini Lakhani. My husband, Anil and I live in Mumbai India with our son Mohit and daughter Tanya. Tanya is 18 and Mohit, our first-born, is now 20 and has Autism. Mohit has been my biggest teacher. When he was diagnosed at age 3 we were living in South Korea. I remember traveling to the United States every year to learn more about Autism so that I could help my son. We tried almost everything that we felt would help him. Diet, supplements, chelation, sensory integration, secretin, swimming with dolphins, auditory integration training and so on and so forth. In the process, I studied ABA and became a BCABA. By this time we had moved back to India and started a center for students who have ASD known as Support for Autistic Individuals (SAI). At present we provide services to about 40 children. We have 25 teachers on board.

Q: How did you find out about RDI? What led you to research/pursue this remediation program?

A: We discovered RDI through close family friends (Shanta and Venkat) who were already involved in the RDI Program. I attended a 2-Day Workshop conducted by Maisie Soetantyo in Malaysia (about 5 years ago). Initially, I didn’t quite understand RDI at that time, but there was something to it and I kept going back for more. Subsequently, Anil and I attended a 4-Day Workshop conducted by Dr. Gutstein in Houston, after which we decided to work with a consultant. SinceJoyce Albu was traveling to India to consult with families’ here, we decided to consult with her. I believe that this was the best decision we made, as RDI has changed our lives. Seeing the changes in my own son encouraged me to study RDI professionally and become a Certified RDI Consultant.

Q: When did you first feel like something different was happening with your child?

A: We realized that something different was happening during the first week of implementing RDI. Mohit was 17 at this time; his head was down perpetually and he was always bent over. In the first few sessions of implementing simple frameworks, such as passing a ball around, he started looking around, sitting up straight trying to understand his role. This was our first lesson in understanding the importance of non-verbal communication.

Q: What was the biggest breakthrough that encouraged you?

A: We started RDI when Mohit was 17. By this time, he had quite a repertoire of skills that we had accumulated using ABA techniques. I am thankful that we had this to start with. However, meaningfulness and understanding of situations and relationships has come through RDI. Things finally seem to be coming together for us. We see a young man who is developing a sense of humor, a sense of self; this is the breakthrough that has encouraged us. We’re greedy for more.

Q: What do you hope the India 2-Day Workshop will accomplish?

A: Our aim is for more people to know about RDI. Many have heard about RDI but they do not understand what it actually is. Who can explain RDI better than Dr. Gutstein and Dr. Sheely? We hope to create a lot more awareness about RDI. For many people in and around India. It may be difficult to travel to the US to attend an RDI workshop. Here is their chance! We want people to take advantage of this and educate themselves.

Q: How is the RDI Program influencing Indian families?

A: People who are involved in the RDI Program understand that they as guides can make a major difference to their child’s life. They feel a sense of competence as parents. RDI has empowered them and given them hope. Their lives have become more meaningful. They feel a sense of bonding with their children. These are some of the things that my RDI families have mentioned.

Q: What are some of your daily RDI Program realities like?

A: Our RDI realities include doing many chores together, playing games, going for walks etc. Togetherness is the key. Life for us as a family has much more meaning. We have learnt to talk less but communicate more. It has made us more disciplined. The time that we need to spend with Mohit is pre planned and we try to stick to our schedules. We no longer live our lives at a fast and furious speed. We try to give Mohit a role in what ever we do. We’ve become more mindful and thoughtful. We enjoy a much more fulfilling relationship with our son, with him taking real responsibility. We still have a long way to go, but we are getting there slowly but surely.

"A journey of a thousand miles begins with a single step."- Confucius

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MUMBAI, INDIA

Sponsored by: Support for Autistic Individuals (SAI)

Topic: The RDI Program for ASD (The first ever in India!)

Speakers: Dr. Steve Gutstein and Dr. Rachelle Sheely.

Date: Saturday, Nov 21 – Sunday, Nov 22, 2009

Place: Mumbai Cricket Association Indoor Cricket Academy and Recreation Centre, (MCA Club) RG-2, G – Block, Bandra Kurla Complex, Bandra E, Mumbai, India 400 051

Description: RDI Introductory Conference: Dr. Steve Gutstein dramatically illustrates the Relationship Development Intervention (RDI) Program. As he guides you through a new way of thinking, you will discover a path for how people on the autism spectrum can develop friendships, empathy and the love of sharing their world with other

Who Should Attend? If you are a family member, a professional who works with people on the autism spectrum, a researcher or educator you can gain new insight from attending this two day workshop.

EARLY BIRD DISCOUNT AVAILABLE! See website for details: www.rdiindiaconference.com/registration.htm

REGISTRATION: Contact : Support for Autistic Individuals, Tel : 022-26611237 / 26612059. Contact Person : Devyani / Varsha, or send email, saischool@ymail.com.

OR REGISTER ONLINE www.rdiindiaconference.com/registration.htm

For more conference details: www.rdiindiaconference.com/attend.htm

Certificates of attendance will be awarded to all attendees.

_______________________________________________________________________________________________________________

For more details about our upcoming workshop in HANOI, VIETNAM read The RDI Program Goes to Vietnam and India.

Sponsored by: The Hanoi Club of Parents with Children on the Autism Spectrum

Topic: “Relationship Development Intervention – New Paradigms for Autism Intervention”

Speaker: Dr. Steven Gutstein, Founder of the RDI Program, and RDIconnect in the US

Date and time: November 14-15, 2009 (9:00 am to 4:00 pm each day)

Place: Hanoi, Vietnam (Specific venue to be confirmed to those who register)

The RDI Program Goes to Vietnam and India

Carlotta Baird — Thu, 15 Oct 2009 13:49:00 GMT

We are excited to announce that Drs. Steve Gutstein and Rachelle Sheely will be giving two 2-Day Workshops in both Hanoi, Vietnam on November 14-15, 2009 and Mumbai, India on November 21-22, 2009. We look forward to seeing you there!

*For more information on the Vietnam Workshop please contact: Ms Thuy Van at: vanthuyfpt@yahoo.com or by phone: +84 902 421 818.

*For more information on the India Workshop please contact: Devynai: 022-26611237, Varsha: 022- 26612059 /saischool@ymail.com OR REGISTER ONLINE by going to, www.rdiindiaconference.

More details listed below and are also available on the Calendar and Event section of the RDIconnect website.

_______________________________________________________________________________________________________________

HANOI, VIETNAM

Sponsored by: The Hanoi Club of Parents with Children on the Autism Spectrum

Topic: “Relationship Development Intervention – New Paradigms for Autism Intervention”

Speaker: Dr. Steven Gutstein, Founder of the RDI Program, and RDIconnect in the US

Date and time: November 14-15, 2009 (9:00 am to 4:00 pm each day)

Place: Hanoi, Vietnam (Specific venue to be confirmed to those who register)

Participation fee: USD150/per family (maximum 2 people)

Deadline for registration: 15 October 2009. We can accept late registration based on availability of seats, but we encourage you to register early.

Registration contact: vanthuyfpt@yahoo.com, phone: +84 902 421 818

Language of presentation: English

(If you require translation other than Vietnamese, we can assist you to hire a personal interpreter. The cost for an interpreter can range from USD200 to USD300 per day. And this cost is to be covered by the participant.)

If you have any inquiry, please don’t hesitate to contact Ms. Thuy Van who is the key contact organiser of the workshop.

About the Hanoi Club of Parents with Children on the Autism Spectrum: At the moment, there are over 500 family members in Vietnam. We have a website, a forum and yahoo groups so that parents can connect to share experience and help each other. Please visit our website to know more about the Club: www.tretuky.com. We also organize seminars and workshops so that parent members can stay up to date with the most advanced therapy and research.

_______________________________________________________________________________________________________________

MUMBAI, INDIA

Sponsored by: Support for Autistic Individuals (SAI)

Topic: The RDI Program for ASD (The first ever in India!)

Speakers: Dr. Steve Gutstein and Dr. Rachelle Sheely.

Date: Saturday, Nov 21 – Sunday, Nov 22, 2009

Place: Mumbai Cricket Association Indoor Cricket Academy and Recreation Centre, (MCA Club) RG-2, G – Block, Bandra Kurla Complex, Bandra E, Mumbai, India 400 051

Description: RDI Introductory Conference: Dr. Steve Gutstein dramatically illustrates the Relationship Development Intervention (RDI) Program. As he guides you through a new way of thinking, you will discover a path for how people on the autism spectrum can develop friendships, empathy and the love of sharing their world with other

Who Should Attend? If you are a family member, a professional who works with people on the autism spectrum, a researcher or educator you can gain new insight from attending this two day workshop.

EARLY BIRD DISCOUNT AVAILABLE! See website for details: www.rdiindiaconference.com/registration.htm

REGISTRATION: Contact : Support for Autistic Individuals, Tel : 022-26611237 / 26612059. Contact Person : Devyani / Varsha, or send email, saischool@ymail.com.

OR REGISTER ONLINE www.rdiindiaconference.com/registration.htm

For more conference details: www.rdiindiaconference.com/attend.htm

Certificates of attendance will be awarded to all attendees.