Ann Millan, author and autism advocate, has some very real and meaningful understandings of autism spectrum. When Ann’s daughter, Robin, was diagnosed with autism in the 70’s, autism was an extremely rare disorder. There were no flurry of organizations, groups or social networking sites for support. Therefore, the Millan family’s path to independence for Robin is all the more astounding.

Robin is an engaging, talented and caring  woman who holds two jobs, drives her own car and owns her own condo. The diagnosis of classic autism is still there, but it certainly does not have the power to define who she is. I am so pleased to be speaking with her mother, Ann, today

Kathleen: Ann, Welcome and thanks for joining me again.

Your book, Autism: Believe in the Future-From Infancy to Independence is an amazing work. Not only do you share your personal family story, but you give a complete description and road map for families to follow who are wondering where in the world to begin charting a productive path for their affected family members.

Today we’re going to be discussing Robin’s experiences with three different language therapies...REI (Rhythmic Entrainment Intervention), Fast ForWord and RDI (Relationship Development Intervention).  First of all, could you describe very briefly what REI is and your family’s experiences with it.

Ann:   REI, Kathleen, www.reiinstitute.com has been developed by Jeff Strong at the Strong Institute. I was interested in it (recommended by Robin’s Language Therapist) to help with her consistency and daily frustration reactions. Admittedly, I was secretly hoping it would help with her compulsive eating, which I think it did. . REI is a rhythm CD with calming patterns specifically designed for Robin. Along with the CD, they provided us with a chart for specific times to listen to the CD each day over a ten-week period.

Kathleen:    I see on the website that there are three different “semi Custom Programs”: Focus, Sleep and Sensory Processing.

You stated that the custom CD created for Robin was intended to help with consistency and daily frustration responses, is that correct? Were the three above components blended into her CD and what were the results of the CD’s useage?

Ann:   Yes. These areas involve a lot. Robin’s consistency falls under “focus” and frustration falls under “sensory processing.” Because I have read Jean Ayers, PhD, book, Sensory Integration and the Child, I understand the broad scope of these areas the Strong Institute focus on.

Funny, sleep is not a problem for Robin. At least I don’t think so. She never uses an alarm clock. She has one “built in” I guess.

Kathleen:  Very good. Now let’s take a look at the program Fast ForWord.

Ann:   Fast Forward is  a product of Scientific Learning, www.scilearn.com. This is more educationally based. Again, it was recommended by Robin’s language therapist. I think many schools use it, but for Robin it was a home program. Robin has done several sets of the reading component.

Kathleen:    I see that the website has a “progress tracker”.  Within your home school did you use the tracker provided on the site?

Ann:   Oh no. I didn’t even know it existed. Robin did FF when she was in her thirties. Dr. Jones (LT) recommended it to try and challenge Robin’s focus and consistency as a complement to the REI. Completing REI but not having a goal to show growth was not productive. That’s where FF came into play. A good example of, “she needed it all.”

Kathleen:   One of the components of Fast ForWord that you mentioned in your book, was the sequencing of paragraphs. Can you give examples of any other aspects of the FastForward program that were particularly helpful in Robin’s case?

Ann:   For Robin, FF was a timing mechanism as well as a learning process. They have games that appear typical but the timing and level of advancing all depend on the student using the program. Robin liked the games. The student cannot go to the next level on each assignment until each has been successful completed. Some assignments/games involved tracking letters, spelling, sentence structure, and she finally advanced to rearranging sentences in a paragraph. From that point the student arranges paragraphs on a particular topic. These were presented developmentally and some, for Robin, were more challenging than others.

Fast Forward sessions were about an hour daily for five days with four or five segments (games/tasks).  Each night her progress was uploaded to Scientific Learning. Dr. Jones monitored Robin’s progress. Robin did three levels of FF. The program was getting too difficult for her and we decided to stop. It was the right thing to do for Robin. Having said that, she definitely benefited.

Kathleen:  I see, so it was a progressive program. From words, to sentences to paragraph structure to paragraph sequencing? All of which take quite a bit of deductive and analytical reasoning.

Ann: You said it much better. Yes. And I think we reached Robin’s academic abilities, which is OK. Our purpose, again, was to emphasize the focusing and keeping her engaged for an extended period of time. We succeeded and this flowed over into other parts of her life - like work!

Kathleen:  Now finally, RDI. This has quite a bit of good press and positive discussions on the autism boards and forums. According to your book, it had very profound effects on Robin’s social skills and prompted her brain to become more‘dynamic’....rather than ‘static’. What can you share about this program?

Ann:    After the REI and FF, Dr. Jones suggested tackling Robin’s static brain. I must tell you, the importance of the therapist already knowing the child before starting RDI, for Robin, was significant. We were definitely on a progressive road for Robin and we now had her basics “statically” structured for us. All of this, a reminder, Robin is also on the GFCF diet with vitamins and supplements.

Now RDI! Fortunately, Dr. Jones has made this financially affordable for us. As I began reading about RDI, I didn’t even realize Robin could become more dynamic. I thought static was just part of autism.

RDI has very specific objectives for the family to do with the child. They are developmental and Dr. Jones evaluates each objective because we cannot go to the next level until the previous level has been mastered.

For example, all these years I have been saying, “Use Words” to Robin. Now I realize, she needs to learn to follow and use her body movements as part of communicating. It’s called slowing down and doing things together, side-by-side. We started our assignments with “no words” just watching and following instructions non-verbally. Guess what, she wasn’t watching. I have a video, attached, where she is to follow my lead making a luncheon salad. She must do exactly what I do. We did this assignment in many different ways. Cutting watermelon, for example, we both had a quarter. She had to cut the exact way I was cutting. OH, how I wish I had know about this when I was home schooling.

 

Three years later, Robin is in stage 8. We are working on levels of emotions. You do not have to have the same reaction to frustration when you drop your fork at the table as you do when you cut your knee in a fall. That’s over simplified, however, the point. Robin is having trouble with this objective and visualizing and anticipating things in the future. She’ll get it!

Today, now that Robin is in stage 8, she has a boy friend she is comfortable with and she is making decisions of things she wants, not what she thinks I want. I haven’t heard the sentence, “do you want me to go to the grocery store” in a long time. She now makes her own decisions. She is laughing at herself and using body movements in a natural way. She cares about how she looks as seen on the second video below.

Kathleen:  The various components of Robin’s “lifestyle”….diet, supplements, OT, speech and language therapies, etc. all assist the ‘normalization’ of her functioning….would you say that’s a true statement Ann?

Which brings a thought to mind…finding the right mix for each individual seems similar to a ‘compounding’ pharmacist! One prescription is not necessarily going to be effective for each and the trickiest part of this process is to have a management team in place, or a person who understands how to coordinate all the professionals involved in formulating the optimum program.

Ann:  Yes, yes, yes. And the parent must take the lead in finding the support team they need for their child. I cannot emphasize enough how hard it is to make these decisions. Trust me, we’ve made mistakes over the years, but we pick ourselves up and move on. Trust your gut.

I think, when I home schooled, I really learned a lot about how Robin thinks. That is really important knowledge for parents. You know your child better than anyone else! I know if Robin had jumped into RDI before we did Interactive Metronome, for example, she would not have progressed as fast in RDI. Robin had a big “timing” problem, not only in language but also in body awareness. That had to be addressed. And, for Robin, all of this success is because of her diet and vitamin supplements to put her at her very best for all of these expensive therapies..

Kathleen:  Well, I believe you’ve covered Robin’s experiences fairly well with the various speech and language therapies that have served her well. Next time, why don’t we come back to discuss ‘behavior modifications’ and which ones you found particularly helpful with Robin on her road to independence?

Ann:  I love talking about behavior. Inappropriate behavior is unacceptable in society, period. That has been my major goal through all these years. . . not easy.

Kathleen:   Yes, behavior is one of those absolutes. Finding our place in society is something that is absolutely fundamental to a productive life.

Thank you so much Ann....and see you then.

For more insights from Ann and helpful autism  information,

look for our next segment of:

Asking Ann About Autism

Ann’s book can be found in bookstores and online at:

Ann’s Book on Amazon

And at Ann’s website:

Autism: Believe in the Future

 

Editor's Note: If you are not getting a safe and secured 6% to 12% on your IRA or Roth IRA investments, click here.​

If you found this article helpful, please make a contribution to the site now. Every dollar helps keep this site available. Thank you.

Amount: $ One Time Weekly Monthly Annually

< Prev		Next >