Q: In your book, Now I see the Moon, you talk about how you remained peaceful in the face of fury and chaos. Can you talk about the process of fostering peace within yourself and holding it until it spreads to others?

Elaine: There’s actual techniques that I do. I’m actually in the process of writing another book called The Seven Keys to Unlock Autism. One of the seven keys, which is actually the first key, is finding that place of calm inside. I think I’ve always had a lot of patience in the sense of having a desire for calm, but it is definitely a muscle that I had to work. The ability to find the calm within the storm, it’s always there inside of us.

The ways that I do it started out of necessity when Neal was younger and really having a hard time – flailing and anxious and just throwing things. If I was also upset or anxious in that moment, I noticed it would make it worse for him. If I could breathe and pray and go to a place of calm in my own being, I could be that calm within his storm and be able to really help him, to co-regulate with him.

I realize I did that even when I was working in the film business. I wasn’t as aware that I was doing it. It was more like a natural instinct. I would be on this crazy, busy movie set with all kinds of chaos going on and have to get two 2-year-olds to perform. I would always go inside myself and breathe and surround myself with my own image. Sometimes I use a color, like a golden light, and I would surround myself with that so I could be really, really calm and sensitive and not affected by whatever else was going on around me on the set. That technique has helped me tremendously in my life with Neal and also in working with the Miracle Project. Before every single session of the Miracle Project, we have the volunteers and staff come together 15 minutes before the class starts. We sit in a circle and we breathe. We get in touch with our body, how we’re feeling, what we need ourselves. We need to give to ourselves first. I always say you have to put your own oxygen mask on first before giving to someone else. We really tune into how we’re feeling, what we need, and get our own sense of calm and peace before class starts. I think that makes a huge, huge difference when the children walk in the door because there’s this common sense of sanity, and sanctity, that they feel as they’re walking in. It’s beautiful that you’ve asked that question because it is really the core of my work. I don’t think I’ve ever been asked that before

Q: In your book you also talk a lot about communicating with your higher self. You describe going to the computer and asking a question then waiting for the answer to come. The way you describe it, it seems very open for anyone to do this. Is that also part of how you go about getting to that place of peace and calm as well?

A: Absolutely. I really feel that we all have access to that higher part of our being. It could be a sense of God. Some people just call it their rational self. What happens so often, we get caught in the quagmire of our emotional selves and can’t get out. I remember one time someone gave me an analogy. They said if I was on a bridge, the bridge was my higher self and I’m looking into a river. My tendency was to jump into that river of emotion. What I’ve learned to do now is to be on the bridge and observing the river of emotion. I still have my emotion. I still cry when I need to and get angry and all that. Yet I have that sense that I am not in the river. I’m not getting tossed and turned around. I’m standing on the bridge saying, “Okay, I’m crying now. This is interesting. I am really sad.” Almost like you would do as a loving parent to a child if they’re going through something, by saying, “Oh, wow, you are really sad right now, sweetie, and I’m here for you.” I’ve been able to develop that part of myself. I do this process called Inner Bonding which your readers might be interested in. There’s a website called InnerBonding.com and that really trained me to be on that bridge and connect to my higher self to be able to go through the storms.

Q: We have a lot of discussions on the site about what people do when they see your kid in the grocery store having a meltdown. One of the things that struck me in your book was that you said that the tantrums are not who Neal is. I was wondering if you could talk about seeing the child vs. the behaviors and ways that parents, and those who work with kids with special needs, can build that sense up inside of themselves and in those around them.

A: I have a couple answers to that question. One is that I’ve learned that all behavior is communication. So, if Neal is temper tantruming, – we’re going through this right now. He is in his teen years and he’s got hormones, and his body can get out of control. I can look at it like, Oh my God, my son has turned into the Tasmanian Devil. Or I can say, His body is being filled with all these strange hormones and he doesn’t know how to deal with these intense inner experiences, so he acts out. Now, I don’t like it. But I know that’s not him. That’s not his essence, that’s not his soul, that’s not his being. He’s not a violent person. He may be showing aggression because he doesn’t know what to do with this energy. What I’ve learned is that he needs to exercise more than ever, three or four times a day for forty-five minutes to an hour at a pop, to get that energy through his body. So that’s how I’m dealing with it right now.

The way that I dealt with it when Neal was younger was, again, all behavior is communication. I would ask myself, what is he trying to tell me? For example, there was a time when he was spitting. Now there are some people that would say, “No spitting! Stop spitting! No spitting!” Right? Well, my thought was that he was spitting for a reason. So we went to the doctor and she diagnosed him with having some gastrointestinal challenges. He was spitting because of an upset stomach. I think people need to not look at the behavior and extinguish behavior without saying, “Okay, what are they trying tell us? What do they need? What can we give them so they can experience life in an appropriate and positive way?”
There was a time when Neal needed to spin in circles. There’s some people who would say, “Sit, sit”, and feed them M&Ms to sit. I learned that he was spinning in circles to help the vestibular part of his brain. Sometimes he would need to spin literally all day long. Then he got to the place where he didn’t need it any more. That’s one of the things that’s been really, really helpful to me.

Dr. Stanley Greenspan’s work is very helpful. A great book is The Child with Special Needs. Barry Prizant has a model called the SCERTS model. The SCERTS model speaks very clearly about all behavior is communication. That’s one of the ways to really be able to love the child, the child that’s in there that just doesn’t know how to express his/her feelings and needs.

The other thing is, children will do the best they can. If you can look at a child that is having a temper tantrum and think, That’s the best they can do right now, it helps.
You need to be a detective. If you see your child banging their head, they might need deep pressure. Temple Grandin needed her squeeze machine. It is so important to always be looking at, What are they telling me? What is their need, and how can I give that to them in a way to satisfy. Sometimes they might just need a temper tantrum. We used to just let Neal temper tantrum and say, “Okay. I’m right here. Tell me when you’re done.”

The typical world needs to stop judging the parents when they see a child in the grocery store having a meltdown. The typical world needs to be able to say four words: How Can I Help? I think there would be less meltdowns. Because you know what happens. Our kid has a temper tantrum, right? So, we get upset because we want to calm them down because we don’t want to upset anybody else. Then we get embarrassed. The kid feels our embarrassment, and then there’s this constant cycle. It’s horrible. If the world around us would just look at us with love and compassion rather than judgement, rather than thinking, Oh what a horrible parent, or Oh, what a demonic child. If they would look with love and compassion, ask those four words. Even if they didn’t do anything but say those words, the parent would calm down and, I can assure you, the child would start to calm down. So, that’s my soapbox in four words. My mission these days is to change the way the world sees autism. It’s the typical world that needs our help because there’s going to be a lot of us out there and we can use the support.

Q: The last question that I wanted to pose to you is sort of broad, but take it where you wish. What would you like to say to our members about, as you put it, shaking hands with the things that frighten us most? How does making this journey into what frightens us most strengthen us both as parents and as human beings?

A:  I think what I want to tell them is that we never do it voluntarily. Courage is fear that’s said it’s prayers. Courage isn’t to me da-da-ta-da! Here I go, I’m going to rescue and save. To me, courage is I’m on my knees, I’m pummeled to the ground, I have no choice but to surrender to the God of my understanding for strength to be able to get through this moment. Every time I get through that moment, the next one is easier and easier and easier. I almost want to say it’s like Jonah and the whale, you know? Rabbi Naomi Levy writes about this. She has a beautiful new book out about her child’s special needs. She writes about how it’s like you want to run into that belly of the whale but you don’t because there is a larger calling. We have to shake hands with that fear and move forward and move through it.

My son, Neal, has changed me. I was a doormat. I could stand up for other people but I couldn’t stand up for myself. I couldn’t stand in myself. Having to fight for what I knew was right for Neal has helped me to advocate now for myself and for thousands of other families and people.

I think that if I were just given courage, I guess, it wouldn’t be as meaningful as being so terrified and coming through to the other side. You read in my book, I lost everything. I lost all my finances, my house, everything. I was terrified, and with a 7 year old severely autistic child. All I could do was put one foot in front of the next. It was like walking on a tight rope but not knowing that the next part of the tight rope would only be there once I made that step. Barry Prizant has a wonderful workshop where he shows a photo of a tight rope like that where there’s no end. That’s who we are as parents of kids with special needs. Only when we take that step does the rope appear under our foot.

So, it’s faith, it’s trust. It’s also asking for help. I think that’s huge. We’ve have to be willing to ask for help. I was always the caretaker, taking care of everybody else. When I was in dire straights, I had to ask for help. And here I am today, Neal’s 16. I’m really good at 14 and under. Parents, professionals, anyone can ask me about children 14 and under. Now here’s Neal, 16, and I am a newbie again. I am a newcomer. I need to ask for help. And I have to tell you, I don’t want to. I want to know the answers now, and I don’t. I have to humble myself and constantly surrender and constantly ask for help. That keeps us part of community, it keeps us being able to, being willing to, receive. I think that’s the other piece, of parents of children with special needs, is being willing to receive.

There it goes again, my soapbox to the typical world is that we don’t want people’s pity, we just would like a little support. That’s my whole thing with the typical world. Ask us over for dinner. Put your fine china away. Invite our kids one night for a holiday dinner. That’s a whole other topic, you can read about that on my blog: 7 Gifts to Take to a Family with Autism

But I think that is it. That when we’re in tremendous fear, there’s only one way out and, to me, that’s up. It’s really asking God for help, and reaching out and asking others for help. Then we get through it and we’re ready for the next adventure. And knowing we can get through it.

Look for Elaine’s new book out next fall: The Seven Keys to Unlock Autism. It will cover using these methodologies and how to implement in the classroom. You can find more Elaine at her Coach E on Autism blog, at her Living with Autism blog at Huffington Post and on Twitter as @CoachE. The paperback edition of Now I See the Moon will be launching at the United Nations April 1^st. in honor of World Autism Awareness Day.

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