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 book. 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 let’s talk a little about the chapter in your book .....‘Our experience as parents’.

Ann:   For me, this is the emotional chapter. It’s hard when I’m talking about my own feeling over the past, almost forty years.

Kathleen: That’s perfectly understandable. A big part of your life has been dedicated to the quality of Robin’s life and the rewards, as well as the challenges, have emotional charges associated with them.

Ann:   Yes, that’s true but surviving the ‘balancing act’ of family and life in general has been as big a part of Robin’s growth. Bob and I are amazed where she is today, based on the fact that we’ve had so much conflicting information and/or encouragement from the professional world.

Robin’s progress was slow but it was mostly moving forward, not backward. So many things just fell into place for her at the right times. That means things like her ability to benefit, our ability to pay, and our ability to work together as a team for all of our children.

Kathleen:  Challenges have a funny way of magnifying the character of the people involved. It seems they either bring out the best, or the worst, in them. You and your family were on a mission to improve the quality of Robin’s life. That is evident from your book. It apparently made your family much closer and more resilient.

Ann:   Robin was our third child. Her sisters were five and seven when she was born. Bob and I’d been married for ten years. Just that basic structure, before Robin came along with her disabilities, was an advantage to our family. We knew what to expect in infancy and early childhood development of a typical child, and we knew what we were seeing in Robin was not normal. In that light, it must be much more difficult for a family with a first child diagnosed with autism.

Kathleen:    An additional benefit was the fact that you were a ‘stay at home mom’. That is rarely the case these days. That is, unfortunately, just not an option for many.

Ann:   Absolutely. I was able to take control and try to help Robin. I didn’t have a choice because we couldn’t afford the day-to-day training or therapies necessary for her survival . . . or our survival!  Because of our 24 hour relationship, I could see that Robin had good days and bad days, and we’d asked why? I could see that her behaviors were not in her control, she could not help herself.
Because I was a stay-at-home mom, Bob and I were able to make our children our priority. I’m not saying we were the best parents in the world, not by any means. It was important to us that I play the same role in our children’s lives as our parents did in ours. That’s not an option or goal for a lot of families today.

Kathleen:    In the beginning, you were aware something was definitely wrong, in part due to Robin’s screaming after her first round of immunizations. At what stage did the ‘screaming as if in pain’ finally subside? And do you have a correlating procedure associated with that?

Ann:    Yes. Robin stopped her wild running and biting her hand about a week after she started the Feingold diet (no food colorings and preservatives).  Her screaming went down an octave and as time went on, she began to listen. It’s funny, we could almost see her ‘think’ at times.

Kathleen:   So what I’m hearing is that there was a period of extreme discomfort and screaming for at least two years?

Ann: Yes, more like four years. The only improvement we saw, however, was the running, biting her hand, and wild screaming. She still had a whole lot of other issues; however, getting past these was major to build on for other things.   

Kathleen:   Absolutely. She was obviously in pain which must have been a heart wrenching situation to watch and have no professional advice to alleviate the situation.

Ann:  Human connection is so important, and we did not have that with Robin at all. No rocking, cuddling, or walking would help stop her screaming. She even fought me while nursing. I wanted so bad to show her love but she couldn’t show any kind of affection or accept any kind of affection. Actually, that was for another twenty-five years! Parents know what I mean.

Kathleen:  The gastric distress was addressed with dietary measures and the imediacy of ‘pain’ was taken care of....is that correct?

Ann:   We always knew, with the Feingold diet, that we were missing a big piece of the puzzle for Robin with diet intervention but we kept pressing forward with it for twelve years. It was definitely better than off the diet. We were just thankful for that change and it did help her to benefit from therapies and homeschooling in childhood.
It wasn’t until Robin was twenty-eight years old that she started the gluten-free, casein-free diet with vitamins and supplements. That’s when all those years of her slow progress came into play for her benefit and her life in adulthood.

Kathleen: Would you say that the Feingold diet, void of preservatives and food additives, gave some physical relief while the GFCF approach gave additional cognitive benefits?

Ann:   No, not necessarily. I’m not a professional, however, the Feingold diet definitely reduced something in Robin’s brain (or stomach) and gave her some clarity. This, in itself, is amazing because Robin doesn’t feel pain like other people do. Robin was also on and off vitamins, while on the diet but since she was a good eater I did not realize the necessity of the vitamins being long term.
I think the GFCF diet probably clarified some of the same things, just did a better job. With the GFCF, we also started the vitamins and supplements, and I think that is also what we’re seeing a lot of today. It has taken ten years (along with her language therapy) to get Robin fine-tuned where everything is balanced. This is from twenty-eight to thirty-eight years old! Today parents can see this same thing much, much earlier in their child’s life.
As time as gone on for Robin, it is evident to me that her body does not absorb nutrients normally. This too plays a big role. Just recently, testing showed that Robin was deficient in protein. That is impossible. Meat and eggs are her main food source. Questions, questions, questions???

Kathleen:    GFCF, vitamins and supplements are all included in the DAN (defeat autism now) protocol....correct?

Ann:   Yes. Robin sees a DAN trained medical doctor, Jeff Bradstreet, M.D., annually, and he monitors her progress and keeps me up-to-date on the latest research.

Kathleen:   All of these steps, including the DAN protocol, have brought your family to where it is today. That is with all three of your children leading happy, successful lives.

Ann:   I am most proud that the girls are leading their own independent lives. That should be every parent’s goal for all of their children. The other two girls have their own families and Robin is living her life as a single independent woman. I will say . . . Robin’s held a job longer than Pam and Karen and Robin is my only child (knock on wood) that hasn’t had a car accident or even a parking ticket.

Kathleen:   That’s wonderful. Your family’s spiritual faith has certainly played a large part in your successes....if not the largest part.

Ann:   That’s where it gets emotional. Our family is not a super-hero family. Bob and I could not have done what we’ve done without our faith and that we asked God to take the responsibility of helping us with Robin. That sounds corny, I know. We could not take the responsibility of raising Robin alone when we decided not to put her in an institution. I know young parents think the ‘institution’ word is over-kill for families in the seventies; however, that WAS our option. Nothing like today.

Kathleen:  Not corny at all. I understand that God never gives us what cannot be overcome…but we do need to ‘show up’ and do our part. I think your family’s journey is a testament to love, faith and taking the initiative to ‘DO’ what needed to be done...one step at a time.
We do have so many supports available today in comparison to earlier decades. Hopefully, the options and the supports are still growing. There are so many areas that still need growth and awareness.

Ann:    You’re going to laugh at me but just yesterday Bob and I took Robin to a vision therapist. We’ve noticed that she has trouble hitting the volleyball when it’s a ‘direct-on hit’ at games. The doctor confirmed, what I had long ago forgotten, that Robin only sees out of one eye at a time, and when she’s in ‘stress’ both eyes fight amongst themselves for dominance. Robin understanding this is important for her. You can’t get frustrated if you can’t see what you’re looking at!
Bob, Robin and I are going to the National Autism Association conference in St Petersburg, FL November 11-13. I’m anxious to hear more about self-video modeling. Robin and I will be selling our book. We’re excited. A mini-vacation!
No, we never quit, and I don’t apologize for that any more!

Kathleen:   That particular project, video self modeling, is really taking off. Michael Leventhal has a host of autism professionals who will be collaborating on his internet video presentation series. More information can be found at www.tech4autism.com.

Ann:  Yes, it’s exciting. Robin is just now understanding her autism, accepting it, embracing it, and moving forward. To be honest, the book has helped. Every time she gives a presentation, it reinforces, in her mind, how amazing she is. Positive reinforcement is Important for people with autism.

Kathleen: Understanding our own uniqueness and contribution to society is a primal need. It’s extremely necessary to feel needed, and a sense of purpose. These things are absolutely essential for mental health and well being.

Ann:   Every family is different but we tried to make our mental health needs a priority for the whole family. Mental health was new on the horizon in the seventies, and there were many ‘good’ books and courses available. Bob and I took several, and this reinforced conversation as to where we were and what direction we wanted to go in.

Kathleen:   You also had the foresight to make time for yourselves, you and Bob, as individuals....allowing for your own personal space. This is just another piece of the puzzle for a successful family, particularly one that contains an individual on the spectrum.

Ann:   One of those books was ‘I’m OK, You’re OK, by Thomas A. Harris, MD. This book helped us realize the importance of being an individual, and we had the ‘power’ to make our lives what we wanted it to be. Don’t blame your parents for your mistakes . . . that kind of thing. For me, someone who felt they were drowning and loosing control of their life, this was life changing . . . both for me and for Bob. In fact we took an I’m OK, You’re OK course.  

Kathleen:    Something striking from your book is how calmly and  lovingly  your daughters speak of their early years with Robin. That, as much as any other section from the book, speaks of the success of your journey.

Ann:   Oh (ha ha), I’m not sure they would have said the same thing if they were twenty years old. Time heals all things! They are in their forties now, and I was even very surprised how they related their childhood. Honestly, I didn’t know what to expect when I asked them to do it, and they did not collaborate.

Kathleen:   The truth of their sharing is evident. Sometime, until we speak things out, we aren’t always aware of exactly how we feel and what things mean to us.
Correct me if I’m wrong, but I believe the process of sharing your story in, Autism: Believe in the Future, wasn’t only about sharing with other families, but it was quite a cathartic endeavour for you and your family as well.

Ann:    Yes, yes, yes. We didn’t even realize how much until it was done. Karen was so busy she didn’t have time to put on paper what she wanted to say. We talked a lot but I needed her ‘words.’ I gave her a week-end get-away at a local hotel and a bottle of wine. And, with her husbands support, that’s how I got her input. She must have called me ten times sharing memories. It was wonderful for both of us.
It’s hard on the siblings . . . there’s no way to cushion that. Parents just have to do the best they can do. I think the book helped the girls realize that’s all we can expect out of each other.

Kathleen:  For that reason alone, I highly recommend at least journaling.  

Ann: Feelings need to be shared, particularly since our legacy to them is the responsibility of their sister who has autism. Robin will need them more than ever when we’re no longer able to help her. Pam and Karen know that. I’m just thankful Bob and I have lived long enough for them to have their own families. In fact, that is one of our motives to stay as healthy as possible!

Kathleen:   That, strangely enough, is yet another way that your family has been blessed. You have two caring daughters who will be a support for their sister when the time arises. Hopefully our society will begin to think about affected individuals who are not so fortunate and begin to plan accordingly.

Ann:  I wish that was true. I think Robin will feel much more secure and comfortable with them being her sisters, not her case manager. They (sisters) have no idea what it takes to keep Robin balanced. Yes, she’s doing great now but keeping everything in place for her is why she’s doing so great. They can monitor and support Robin but the full responsibility might be more challenging than they realize.

Kathleen: It is going to continue to be a ‘team effort’ isn’t it? That reminds me of, ‘Ode to My Staff’!

Ann:   Oh yes. Pam and Karen are very familiar with those teachings, and they can help others for Robin’s benefit.
I don’t want to end on a negative note here. We certainly haven’t let go of our vision of Robin’s independent future. And, being an optimist, time is still on my side.
The most emotional part of the book for me is when Karen said, “I am so thankful for my parents’ relentless efforts in giving her [Robin] every opportunity to improve.”

Kathleen: They share in their sister's triumphs. You have an exceptional family Ann.

It will be wonderful to watch where the road will lead from here.

Ann: Robin continues to progress so much every year that today’s concerns may not be next year’s concerns.

Kathleen:  It certainly is, and Robin, at this moment, is living on her own, driving her own car, owns her own condo and (in her own words) “loving her life.” That sounds like a success story to me Ann. I have no doubt that her life, in future, will continue to ‘progress’.  Thanks to your book, her life and successes will also influence the progress of others!

The next time we come together, let’s take a look at “ Robin’s Siblings”.

Ann:   Definitely.

 

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 >