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Going to the Heart of Autism

"© Copyright 2006, Connections Center, All rights reserved. www.rdiconnect.com"

It's All About Attitude: loving and living well with autism. Interview with Co-author, Gayle Nobel (Part 1)

This week, we are featuring an interview with Gayle Nobel, co-author of "It's All About Attitude: loving and

living well with autism."  Gayle is also the mom of an almost 23-year old son with autism, and she has been

doing the RDI® Program with him for the past three years.

Gayle, what message did you want to give parents about  living well with autism?

What we really wanted to share with other parents, is that no matter what happens, how their child progresses or doesn't progress, they'll be OK and that their child will be OK. They can live well; they can live happy. It's OK to have a child who is different, and it can be a really good life, even a great life. I really want parents to feel good, or at least feel better about their child and about their life. I also want them to know they are not alone and hope the book provides some heart-to-heart, parent-to-parent support. In the book, we bring up questions and feelings that aren'ttalked about that much: like, what happens when you take your child out in public and the way other people react or don't react; and then the way you feel when you see how people react; and family dynamics--how your extended family reacts. We talk about the issue of wanting to cure your child; we all think about that. We may not say it out loud, but parents have these

thoughts. Also, I think sometimes we don't talk about or acknowledge how depleted we get, and how we need to fill our wells; and we may know it, but not do it enough. We hope all our personal stories in the book help make it easier for other parents to live well with their own day-to-day situations. So we want the book to say, "We're here for you. We understand what you're going through because we've been walking that walk, too. And that it's going to be OK no matter what; and it is your attitude that helps make it OK and it is your attitude that will help you be more loving... leading to living well with autism."

Is that what you mean by, "It's all about attitude"?

Yes, I think your attitude determines your experience to anything in life, but especially to your child. Early on, my attitude was that Kyle was doing the best he could do, given the way his brain is wired. And I knew that attitude would affect our relationship, because I believe anybody can pick up on what your attitude is; with or without autism, anybody can know if you're happy or unhappy with them. But it wasn't always like this. In the very beginning, I did see autism as a terrible thing. It was also a scary thing to me,

because I have a brother with autism who is now 46 years old, and for many years I didn't even know the name for what he had. But I knew he didn't live at home with us; he grew up in an institution. And then when I had Kyle, I knew I wanted to change the way I saw autism, to be at peace with it. I knew that

if I saw it as a terrible thing that I had to live with, and if I felt "poor me; this isn't the child I wanted", that I would live differently than if I could see it another way.  Also, the thing about attitude is that it's the only thing you really have control of in life. You certainly can't control the outcome of what happens with your child. You can't control circumstances or other people so it's very empowering to know you can control or change your own attitude. It's not always an easy thing either- it's another part of the process. But just

knowing that you have that power even if you don't always have the best attitude, is empowering. We really wanted to give the gift of that awareness to parents.

How did you come to terms with autism and "be at peace with it"?

It was definitely a process. I asked myself and other people questions and tried to figure out why I believed certain thingsand what things I didn't want to believe any more. For example, could I substitute "autism is good" for "autism is bad"? Autism has been good for me. It's made me a better person, challenged me to grow, made me a better parent not only for Kyle, but for my other children as well. I believe we all have a choice and so no matter what the circumstance is, a particular attitude is not a given. It's only terrible if you see it that way. Is having a child with autism easy? No. Are you going to have some days you're

frustrated and crying? Yes. But why does that have to be a bad thing? Looking gently at my beliefs helped me to feel good. Another part of my healing process took place in writing. My coauthor, Kathy Almeida, encouraged me and I began doing a lot of journaling as well as writing exercises. Then I wrote my first

article, "The Gift of Kyle" (which was published in Autism- Asperger's Digest Magazine) in response to an editorial I read about a professor who believed it was OK to terminate the life of disabled infants up to a certain age. It was a wake-up call for me in many ways...this is where the belief, "having a disability

is a bad thing," could take you. That was scary. But the other wake-up call was that my writing had the power to move and impact people, including myself.

So acceptance was quite a journey?


Yes, in the book I talk about how I came to accept that I had a child who is different and knowing that I wanted it to be OK and knowing that journeying to that place is a choice. It also seemed the older Kyle got, the easier it became to accept "what is." I don't mean I resigned myself or gave up, but just softened a bit. It was easier to be aware of how much he taught me about living and what was really important in life.

Acceptance is an important part of attitude and I think sometimes people get confused and think if you accept autism it means you are giving up. Actually, it's just the opposite--if you accept it, I believe it frees you to be happier and more at peace and then it's easier to go for those things that you want for your

child. You will see your child with different lenses. And you will also come to your child as a more inviting person to be with, because you will not be so frantic to fix him or her. If you believe in them and their potential, you're going to go for more.

What's the "more" you're going for, now?

I always keep in mind my goal is to help Kyle grow and learn to be the best he can be -- and we don't know what that is -- and help him have the best quality of life possible. That's what it's all about. I really strongly believe this. In working with Kyle and also talking to parents and then hearing about those on the autism spectrum who have graduated from professional programs, but then can't get a job and live at home and stay in their room all day--if you don't have a quality of life, are you really "high-functioning"? Relationships are such an important part of life, but it's almost like we forget that. Besides the autism, my son has a lot of other issues-- fine motor, cognitive-- and maybe his skills in those areas won't get a lot better; but he's really developing the relationship piece now, and maybe that's where he also has the most potential.

What has happened in the last three years, since you started the RDI® Program?

If you had told me before we started the RDI® Program, that Kyle would have grown as much as he has, and be doing all the things we do together now and enjoying them, it would have been hard for me to imagine. He's initiating so much more; he wants to be with us; do things with us; he's much more able to

express his enjoyment of things and he's able to reference me for reassurance and soothing when he's uncertain or scared; his confidence has really grown. I can only think that 3 years down the road we'll be even farther along. He may even go at a faster pace. For anybody, we grow so much as human beings-- I've

grown tremendously since I was 20, why would he be any different? He just needs more coaching and more assistance. Sometimes that means challenging him and sometimes that means doing nothing and resting because the resting is part of the growing too. And I don't know where he'll be, but I don't think he'll stop growing.

 

Going to the Heart of Autism

"© Copyright 2006, Connections Center, All rights reserved. www.rdiconnect.com"

Interview with Gayle Nobel, Co-author of It's All About Attitude: loving and living well with autism. (Part 2)

Gayle Nobel with son, KyleThis week, we continue our interview with Gayle Nobel, co-author of "It's All About Attitude: loving and living well with autism." Gayle is also the mom of Kyle, her son with autism who just turned 23. She has been doing the RDI® Program with him for the past three years.

Gayle, you started the RDI® Program with Kyle when he was an adult?
Yes, we started RDI® when he was almost 20. Actually by then, I never thought I would do another thing! We had done everything: physical therapy, speech therapy, occupational therapy, sensory integration therapy, special needs preschool, the Son Rise program, which we did exclusively for about 6 years, patterning, PECs, facilitated communication, ABA, music therapy, homeschooling, a modified TEACCH program, diet, food allergy shots, B12 shots, secretin, Tomatis, vitamin and fish oil supplements, homeopathic treatments... I was done. I was tired.

But then I heard Dr. Gutstein speak and Kim Isaac (Kyle's habilitation therapist at the time) was very enthusiastic and decided to become certified, and we just kind of eased into it. It made the most sense of all the things we did, and I liked it. The idea that we could still work on the relationship and we could still have more of a connection with him was exciting to me. And it seemed like it was something we could integrate it into our life, which I liked. One of the things that happened in our family, is that we're kind of divided. Certain things happen with Kyle; other things with my two girls, and I thought maybe this would bring Kyle back into our lives. I was having fun with it and I didn't feel any pressure that we had to get to a certain place and so that fit into my new philosophy of enjoying just being with him.

What has happened in the last three years, since you started the RDI® Program?
We've seen a lot of changes in the last 3 years. Kim [Certified Consultant Kim Isaac] and I were talking about it recently and she sent me this short "progress report":

• Kyle's trust within one-to-one interactions has been established.
• His confidence and motivation to be with people has increased.
• His initiations of interactions have increased.
• His self-regulation has been discovered and he can cognitively shift from dysregulation to regulation.
• He is easier to be soothed.
• He is overall happier.
• His emotion-sharing and referencing is evolving, whereas before there was none.
• A true apprentice relationship has been established.
• Both parents are much more equal relational partners and feel empowered!
• Both parents have increased confidence and understanding of autism.

The other thing too is that in the course of working on RDI® other things have improved as well. For example, Kyle and his dad have started playing basketball together and Kyle is catching way better than I ever thought he would be able to. Before, he would just kind of release the ball, but never really throw it back to a person. Now he actually throws the ball back to his dad because he understands he is part of the relationship. It makes him feel good and it makes my husband feel good, too!

What would you say about RDI® to other parents of adults with autism?
I'd say, "Try it. My son just turned 23 last week. He's made a lot of progress with RDI® even though he has a lot of other challenges along with his autism. You have nothing to lose and everything to gain. It's never too late for anything. Even if you're tired, and feel like you're done, which is how I felt, you can do as much or as little as you want. We did less before; now we know how to integrate RDI® better into our everyday lives, and do more. There's not a lot of pressure. Do what you can. Start with doing one piece."

Can you give us some advice from your own experience, for those doing the RDI® Program?

Slow down! Slowing down and enjoying the process heightens your appreciation for your child and your relationship with your child. It just makes life "juicer" and more fun. It's hard to have fun if you are in a rush to get through the process to get to the end result. You miss things. It's not about the thing you're doing but the process of doing it together.

I think whatever we end up doing with Kyle, like getting the mail or taking the garbage out, it's going to take 3 or 4 or 5 times the amount of time. He helps me with doing the laundry and he's slow, but it's not really about getting the laundry done or taking the trash out; it's about us working as a team. It's OK to do it slower; we don't have to be in such a hurry to do everything.

If we're always racing to school or to one therapy or another or to doctor's appointments, we have to question that; if you're spending so much time racing; you don't have time to just BE with your child. I realized it's not always about having some place to get to or not always having something to work on, but sometimes it's just about BEING TOGETHER. After we take a walk, Kyle likes to sit on this brick ledge we have, and he's quiet and calm and he looks at the sky and sometimes I still think I should come up with a little RDI® activity, and then I remind myself that it's OK to sit and do nothing with him, and to enjoy just being with him, just as I would with anyone else.

Also speaking from experience, I'd say, lighten up, have a sense of humor and don't take everything so seriously. I'm really very guilty of not doing that, myself. I don't know how I would have survived without my husband's sense of humor-- just enjoying, just laughing, just enjoying life. That really adds to quality of life. As parents of children with autism, we can be so driven, but you don't always have to be on this intense mission. That's one thing I reflect on, in the book: "I could never do enough. Sick days or rest days were not allowed for either of us. The window of opportunity often seemed on the verge of closing, so I had to cram it all in before it slammed shut." But I learned you don't always have to drive yourself so hard.

Do you have some closing words about your experience with the RDI® Program?
We're now living the future I worried about for so long. I didn't know what to expect when we started the RDI® Program, but it's been one little surprise after another. Sometimes Kyle will do something new, like a look or a referencing, and I'll think, "that's new, but it seems like he's always done it, because it seems like such a typical thing in a relationship." They're little things but they're big things. In the early years, before RDI®, I felt like I was trying very, very hard. RDI® feels really good and it doesn't feel like I'm working so hard. I just want to be with Kyle and enjoy him and have him enjoy me and now it's really, really fun.


 

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