IF you would like to donate to the fundraising Campaign to support Mel and her family please visit the Give Forward donation page to DONATE HERE: Melanie's Give Forward Page
No way around it, being a parent of a child on the spectrum is a big challenge. Throw in Cancer on top of that, and well, it's even harder. That cancer, for TMR's Booty Kicker Melanie is out of remission and spreading for the third time...She has a beautiful Non-verbal child who needs care 24/7. Right now this is Melanie's world. Melanie is a mover and a shaker who is fighting as hard as she can to kick cancer's butt a third time. Please join us in supporting her family in their time of need. We know Melanie has so much faith, love and healing energy behind her. Please say a prayer for her and her family now, too, see her happy and healthy and caring for her amazing son. We are all cheering you on Melanie sending you love and light and healing!!
IF you would like to donate to the fundraising Campaign to support Mel and her family please visit the Give Forward donation page to DONATE HERE: Melanie's Give Forward Page
New Frontiers November 2012- I love these people!
What a great year it has been! First, let me say I can't believe how long it's been since I have updated the blog page. November and December are notoriously busy and this year has been no exception!
I had a phenomenal time at New Frontiers in November. I feel incredibly blessed to have had the opportunity to meet (and stay in touch with) so many incredible parents. We laughed together, cried together, supported each other, learned together and grew together. It easily ranks up there with the best experiences of my life!
As always, the teaching was supreme and the learning hands-on. We learned from Bears, Samahria, Bryn, William, Kate and Beverly. It was exactly what we needed, right when we needed it. We learned how to craft creative, innovative games using our child's unique motivations to achieve targeted goals. Exactly what I was looking for! And, can I just tell you? SO MUCH FUN!
While I was there I also had a consult with the amazing Kate Wilde. Was that ever great! Most of the consult was spent discussing how to remove electronics. WHAT??!! No TV?? No iPad??!! Right. When you think about it, electronics are autistic in nature. If you are trying to get someone to engage with you, handing them an iPad or the television probably isn't going to foster the engagement you seek. We certainly saw this at home. Danniah loves the Muppets, and as Kate said, "There is no human being on the planet who will ever be as colorful and entertaining as a Muppet." As much as we knew this step was necessary for Danniah's growth and development, I don't think either one of us was looking forward to it. When talking with Kate, I know I felt traumatized as I anticipated this terrible transition from the ever present world of the Muppets to...well...no Muppets. I anticipated crying and tantrums...and dreaded the very thought. I also had no idea how I would 'get a break.' As much as I hate to admit it, a Muppet DVD provided time to breathe and relax. Kate looked at me and offered encouragement, "some people are surprised by how quickly their kids move on to the next thing." I, in all my glorious doubt replied, "somehow I don't think I'm that lucky."
The reality was that in order for playroom games to work, in order for us to have a shot at being the most interesting thing in the playroom (or house), it just had to go. Plain and simple. We took them out of the wall the Tuesday after Thanksgiving and did exactly what Kate suggested. When she came home from school, we said excitedly, "Danniah, LOOK!! We gave away our TV because we want to play with you more and look at you more!!" She had this initial look of total shock, but no tears (yay!). She asked for shows maybe 8 times during the course of that day, but never cried. The rest of the week, each time she came in the house, she would immediately look in the living room to see if the TV was back and when it wasn't, she would then run down the hall to see if it was back in our bedroom...of course, it wasn't. She asked a couple of times that first week, but since then she hasn't asked at all. We did get her Muppet figurines and a paper punch out theater set so she can make her own Muppet show. She loves them. We also laminated pictures in place of DVD cases so she can ism with them (which she does). BUT there is so much more "real" interaction!
We have the best time doing silly yoga poses and falling over together. We make up games where we run from one side of the room to get a paper Muppet doll and race back to put it in her theater... we made a Muppet game where she rolls a tissue box covered in construction paper with Muppet faces on it. She jumps off the trampoline to land on the color construction paper the dice landed on, flips it over and reads the activity and giggles (erm, well when she's not peeling the Velcro activities off the back of the construction paper as an ism, but whatever it's fun!). She also wants to go downstairs to use her sensory gym on a pretty regular basis. That is something she hasn't wanted to do for a long time. It's so nice to see her connecting and branching out at the same time! She's even using a bit more of her own language rather than scripting, which is another huge bonus. She recently said, "Daddy, I want back push" meaning "push my back" while she was on the swing. SO MUCH FUN! Sure, we have a long way to go, but who cares, this is GREAT! I was so afraid that weekends would be long for her and I'm delighted to discover that they fly by and are so much FUN!
Even people at her school have noticed positive changes since the great electronic exit. Danniah's teacher recently said to me, "she just seems so much clearer and so much more available." Then she told me that Danniah played a math game with 3 peers the other day. They each had to take turns picking a card and whoever had the higher number got the cards. Then they added the cards together and whoever had the higher sum got the cards. The teacher said she was so proud of Danniah for waiting so patiently, taking turns, and doing everything appropriately. She very likely would not have had the attention span to do this even a couple of weeks ago. In fact, when her world was full of electronics she didn't have a huge interest in her peers. Well, that's not a fair statement. She has always been interested in her peers and very aware of what they were doing. This year, however, was a big transition to a new school with all new peers and teachers. She just recently got acclimated. Now she is very aware of her current peers and wants to be with them all the time. She is in a typical class with an aide and the kids are all so very good to her, which makes us feel so blessed. I wish we had done this sooner, but we did it now and it's truly fantastic!!
Holiday update coming next :)
With much love and gratitude,
Wishing you all a very Happy Thanksgiving! We are so thankful for all our family, friends, amazing volunteers, Son-Rise, Option and so much more!
May you all have the most blessed, delightful day with those you love!
Monika, Sam & Danniah
PS-Posts from New Frontiers and program updates coming soon...Promise! :)
I had a fantastic consult with William last week. You know when your mojo just needs a little boost? Yeah, that's where I was at. What a boost I got! William made some fantastic points about Joining and about Son-Rise that really made me think. It also made me realize some very subtle things about joining that are so important.
One of my favorite points that William made was, "So many people think that the playroom is Son-Rise. The playroom isn't Son-Rise. You are Son-Rise. It is your attitude, love, acceptance and perception that make up Son-Rise and create the healing force." That could not be more true! The dialogue process was lovely. I had the opportunity to explore a situation that I have not been thrilled with. I've also not been thrilled with the fact that I can't really change it. Although I was initially stumped, I really appreciated his question, "I understand that this is the situation that you are in and that it is not the situation that you want to be in. But it is the situation that you are in, so why hate it?" Heh. Interesting. After some exploration I began to understand what he was really talking about. If I'm angry, frustrated or hating a situation, I'm sending a message to Danniah that will make her feel uneasy or unsure. That is never the goal. Instead if I can hold the fact that I want the situation to be different, but it is the situation we are in right now and essentially say to her, "here we are! Have the best time while you're here!" then I am setting her up to feel comfortable and happy, even if the situation is far from perfect. Son-Rise definitely happens outside of the playroom.
The four points I really took away from my consultation were 1. Always respond to the first "no" 2. You are Son-Rise, not the playroom. It's the loving acceptance that makes it all work 3. when you join have your own experience and don't stare at her waiting. Just glance up, celebrate eye contact when you get it and build at all the green lights. 4.Have a plan for a game that you might want to try when you get a green light.
Let me revisit number 3. The whole having your own experience while joining somehow managed to escape me. I had been joining by doing what she was doing, but mostly I was watching her too much, almost as if I were desperate for a green light. When I would say what she was saying, she would shush me pretty quickly. Suddenly, a combination of what William said and observations of a brand new volunteer made it all fall into place for me. As Danniah ismed with her books, I felt myself relax. I picked up a different book and began to read and enjoy it. Previously I had been turning the pages in sync with her, but to be honest, I wasn't really looking at the pictures. I was too busy watching her, waiting to celebrate eye contact or build at a green light. But in this new moment, I was really enjoying the book and its brightly colored pictures. While Danniah was scripting to her book, instead of using her script as I had been, I very simply in a whisper read a couple of pages out loud. I'd glance up every so often. When I caught her eye I'd celebrate in various ways. A point to my eyes, a thumbs up, a verbal thank you, a happy look... When I got a green light I'd invite her to engage. I felt completely connected with her. I wasn't "needing" a green light. I wanted them, but I didn't "need" them and that completely changed the whole dynamic and made it so much better. Danniah was more relaxed and open. I felt completely content and as a result she let me join her more fully than ever before while she ismed. It finally clicked! I finally understood the difference between imitating while needing a green light and truly joining and enjoying my own experience while "monitoring" for green lights! And that made all the difference in the world.
I shared this realization with all of our volunteers. One of them, Alyssa C., noted, "to her it's probably like you're just sitting there reading books together." We both laughed. That was exactly it! She hit the nail on the head! She then said, "sometimes it's the little things that are so important and make all the difference." She is so right about that!
Joining is about syncing into the situation, enjoying it, having wants without needing them. Check out the short video below. Raun and Bears join each other as they get to know one of their staff member's babies. They are in sync, enjoying their own experience. Notice how Bears looks up occasionally and checks in with Raun as he continues moving and chanting. It's being fully present in the moment, enjoying every aspect of the moment that creates a beautiful symphony that moves a relationship to new heights.
The best part of Son-Rise is that it is child led. That means that Danniah chooses what she wants to do all the time. We use whatever her motivation is to encourage her to move forward. Some people hear that and scoff, "well if she's always doing what she wants, how is she ever going to move forward?" Allowing her full control and moving forward are not mutually exclusive. Son-Rise has brilliant methodology. There is a time for joining and a time for building and it is important to know the difference.
When a child is engaged in exclusive, repetitious behavior (what Son-Rise refers to as an 'ism') we sit about 2-3 feet away and join them, while always celebrating eye contact and watching for green lights that we use to inspire growth. Joining is not simply mimicking whatever Danniah might be doing: it is much more than that. It is really being present in the moment, while appreciating and trying to give yourself the same experience that she is giving herself. I vividly remember being at the Start Up training when Bryn had us all ism together. We all stood up, closed our eyes and swayed back and forth. Then we patted our hands rhythmically on our thighs for a bit. Then we repeated three names over and over again "Dylan, Abdullah, John." Then we put all three together. 88 of us swaying, patting our thighs, repeating "Dylan, Abdullah, John," all in rhythmic sync. When we stopped, Bryn polled everyone in the room about what it felt like for each of us. Every single answer was some variation of, "Grounding" "Centering" "Meditative" and "Peaceful." By giving us that experience, Bryn helped us all understand at the most fundamental of levels just how important our children's isms are. It is how they ground and comfort themselves in a world of sensory overload that often feels chaotic, overwhelming and difficult to understand. Isms create safety. They are predictable where people are unpredictable. Once you realize that, you suddenly have a profound appreciation for just how mean it is to not let a child ism.
Bryn Hogan getting her 3Es on while teaching Start Up
So, yes, where other types of programs endeavor to interrupt or stop an 'ism' because they view it as something negative, Son-Rise recognizes its importance and turns it around. "You love it; I love it." We are sending the all important message that "I love you and I like what you like." When you remember that the first step in building a real relationship is finding common ground it makes even more sense. With this realization you can now fully appreciate the importance of the 'ism,' for it truly is the bridge that brings you together. We cross that bridge to enter, appreciate and embrace her world, and she will cross that same bridge to more fully enter our world. Celebrate the ism!!
But suppose she doesn't want you to join her. Then what do you do? That most certainly happens! Sometimes we will get a firm "NOPE!" or "No thank you!" When that happens we move away a little bit, we become softer, quieter. We make sure we have our own set of the same or similar materials. If she takes our set away, that's okay, we freely relinquish what we have and then we play with an imaginary set. If for some reason that still isn't okay we might say, "what? I don't have anything. I just love you and want to be with you." If that doesn't work then we sit quietly and imagine as vividly as possible that we are whole heartedly participating. We imagine, using each of our senses, what the activity feels like for us. Where ever we can say "yes," we say "yes!" in Son-Rise.
"Saying "no" a lot is a sign of an over controlled child." When I first heard that at Start Up, I felt a sense of profound sadness, because Danniah has said "no" a lot to joining her isms. It made sense, however. ABA and VBA are well known behavioral therapies for autism and they are essentially all about getting the child to conform...so is school. Even FloorTime, which we have also done, interrupts isms. She spent two years doing what everyone around her wanted her to do. "Do this, do that, sit here not there, touch this not that, get this, go there." were, I'm sure, many of the directives she heard in a day (and probably still hears when not at home).Can you imagine for a second how all of that can send the profound message of "you're not okay" to a child? Heartbreaking to think that any child ever feels like they don't measure up. And, no wonder she would want us all to buzz off when she could finally let go, relax and ism.
Hearing Bryn talk about that aspect gave me a profound sense of appreciation for just how little control she has had in her own life. That needed to change! Without comprehensive reciprocal language she has been limited in her ability to tell us how she feels or what she needs. But when she scripts or isms she is telling us that she is anxious, overstimulated, bored, in need of a break. Where ever she can have control, let's give her control! And that is the beautiful thing about Son-Rise. It is a YES program. In fact, it is a YES, THANK YOU program! You want all the blocks? Take all the blocks! You want all the Barbies? Have all the Barbies! You want me to be quiet while you script Elmo? I'm quiet! Script Elmo! We are just going to be right here loving, accepting and appreciating every single thing there is about you!
Guess what? It works! Danniah has one particular ism where she will go through a stack of DVDs, either reading the titles out loud, signing or scripting to the individual DVDs. Initially when we tried to join her, we got a very angry "NO!" Even when we attempted to pretend and only mouth words we were forbidden to do so. Now we can pretend with her and lately we can whisper or even say the words right along with her. Instead of a scowl, we get a curious smile. Other times we can use a stack of books to join her...and when we get green lights, we've even been able to inspire growth (more about that another day). Just yesterday Meghan was able to participate in Danniah's ism by handing her the DVDs --that would have been unheard of just two weeks ago. If you look at the last two pictures, you'll see Meghan joining in a very quiet way as Danniah tries on her purple light up dreadlocks. She has a relaxed posture, a pleasant smile and her gentle, loving energy was unmistakable. Look at what happens next. In the next picture, not only is Meghan sporting her own maroon hair extensions, but Danniah gave her a green light allowing Meghan to inspire growth by building and initiating interaction. Participation and interaction in what began as a very solitary, don't-even-think-about-joining-me activity.
Son-Rise is an absolute blast! Danniah is genuinely excited to see each volunteer when they arrive and it is so much fun watching her build relationships. It is just as much fun to watch our phenomenal volunteers learn how to harness Danniah's motivation and begin to work magic with it.
What a great week it has been! We want to welcome three incredible UNH Communication Science and Disorders majors to our team! They are amazing and dove right in! Big enthusiastic welcome to Meghan, Alyssa C. and Alyssa V.!! Danniah is crazy about them!
We've had so much fun this past week! It has been a true delight watching Danniah bond with three new people in her life. She took to each of them the moment they walked through the door. She had a wonderful time playing telephone with Alyssa, hanging up on her and laughing hysterically at Alyssa's reactions. Meghan and Danniah made some serious music together. It was also really sweet to see Danniah initiate using balls as drums and then searching high and low for the perfect ball for Meghan to use. I loved watching her thoughtfulness.
We're already seeing a small shift in language, which is her most challenging area. Danniah has been reliant on certain phrases that she applies broadly. For example, "I want to go over there" accompanied by pointing or "I want sit down" when she wants you to sit down. Using a combination of Son-Rise techniques delivered with the 3E's, Danniah has already figured out that things are shifting. Now she is thinking a lot about what she needs to say to get us to do what she wants us to do. You can see the wheels turning as she pauses, searching for the appropriate language. Much to my delight, I've heard a spontaneous "I want to go living room" today, rather than the standard "I want to go other room." Specificity! It's beautiful! I've also heard a few unprompted, "Come with me!" rather than "I wanna go over there." Her para at school even noted that all on her own she said, "I want go in tunnel" while she was in the Motor Room, rather than "I want tunnel." Not bad after just a couple of days of Son-Rise this past week! What fun to watch this program begin to take off! The best part of all is that Danniah loves every minute of it!
On another fun note, we had Clifford for a night this week! Danniah's Kindergarten class has a Clifford that goes home with a different child each night. He comes complete with his own travel journal that describes his adventures. We had a great time looking through his journal and seeing what he did with some of the other kids in Danniah's class. He went to the playground, a Hip Hop class and did all sorts of fun things with the other kids!
Clifford seemed to have a pretty great time here, too. He cuddled with Danniah for a while and met Moka. They sniffed each other's noses and decided that they each smelled pretty good. Then Clifford got to try out Danniah's sensory gym downstairs. He went down the slide, jumped on the trampoline, tried his paws at swinging and hung out in the ball pit. He even tried camping out in the Son-Rise Playroom, which is currently sporting a tent! Clifford is welcome back any time!
You can join with enthusiasm anywhere!
All we do is guided by our intention. In Son-Rise the flow is:
Intention-->Attitude-->Action our intention is to love, heal and educate. We are excited to play and interact (attitude) and we take action by applying the principles of the Son-Rise program. How awesome is that?!
So, what are we doing with volunteers in the beginning? We're building a cocoon for Danniah, one where every person in her program looks at her with a smile and a solid belief in her limitless potential. We're creating a sense of family where we are all captivated by the wonder of who she is, knowing she is fully capable.
One of the ways we begin to build relationships is by learning about something that the person loves. We spend time observing and paying close attention to the things that Danniah loves and is passionate about. Somethings are super easy to figure out. For example, she loves music, dancing, singing, being silly, Sesame Street Muppets (Elmo remains a fav!), the musical Oklahoma!, Laurie Berkner, and the mirror, where dressing up and making faces is so much fun! She loves it when we dance, play,laugh, tickle her! Her eyes twinkle, her smile lights up her face and her laughter fills the room and our spirits! Somethings are a little harder to figure out, like when we can fully sing with her or when we can fully (big or small) join in a particular "ism." As we observe and respond to her reactions, we learn to join her in a way that is comfortable for her and in so doing we learn more about her (more on joining later).
The first step is in this whole process is connecting and building rapport. We set our intention to be inviting and inspiring. Our attitude is one of enjoyment-we enjoy Danniah and delight in all she does. We take action by animating our faces, varying our voice and moving our bodies.
Let's think about it for a minute. Most children on the autism spectrum have difficulty connecting and relating to our world. Some are completely in their own world, others are related but not aware of social 'rules' like personal space or responding spontaneously to a 'hello.' We want to help them be excited about people and sustain relationships, so we model this by being excited about the child. Yep, you guessed it, we are effectively selling human interaction! This is where the 3 Es come in. What are the 3 Es you ask? Energy! Excitement! Enthusiasm!! Everything we do in Son-Rise is delivered with the 3 Es. We animate our voice, facial expressions and actions to make ourselves more interesting, in fact we want to be the most interesting thing in the room. I have to say, Danniah LOVES the 3Es! She is interested, curious, engaged and happy. She has fun with it. When we use the 3Es, she uses the 3 Es. What a delight!
I think sometimes there can be some misunderstanding about the 3Es. People often hear Energy Excitement and Enthusiasm and immediately think 'Big and Loud.' While it's true that sometimes the 3Es are big and loud, they are not always big and loud. Let's face it you can't be big all the time-it becomes predictable and boring if not annoying. I'm reminded of some outtakes I saw of the Jim Carey movie Liar Liar years ago. I don't remember the specifics of what went wrong but Jim Carey said and did something and his costar yelled "Over-Actor!" That's what we don't want to be. We want to be genuine and use a range from small and soft to big and loud. We want to gauge how big and loud or how small and soft according to her reactions. Try big and loud if that seems like it might be fun. If she loves it, go with it! If she doesn't love it, tone it down, try whispering, softening, taking a step back. Most of all we are present emitting loving, accepting energy in all we do. And boy does she love it! It ensures that she is not only part of the process, but most often guiding it. When you see her having fun, relaxing and truly enjoying herself you see how effective it all is.
All that said...she most often does love big and loud. I suspect she would wholeheartedly agree that you should "never underestimate the power of the Snoopy Dance!" Let go, be a kid again and have fun! It really is the most beautiful connection there is.
Monika & Sam
Danniah's Son-Rise Journey's Table at UNH
What a great event sponsored by the UNH Office of Community Service & Learning! It was so much fun meeting so many wonderful and talented students. It was also heartwarming to see the turnout and how many people want to help organizations. Whoever said the younger generation is selfish has never met these students! They are phenomenal!
We're looking forward to getting to know a few of the students better and can't wait for them to meet Danniah soon! Stay tuned!
Meet Danniah and see her exciting progress with the Son-Rise program! Would you like to be part of this amazing journey? Would you like to learn about autism, have more fun than you ever thought possible and learn tools to improve your own life all at the same time? Come volunteer with us!
We located on the seacoast of NH and we are partnered with ASD Climber, which allows volunteers to officially log their hours with a 501(c)3 nonprofit and receive letters of recommendation. More details about volunteering can be found here or simply contact us using this convenient form.
We would love to have you join the fun and experience the magic!
Monika, Sam & Danniah
Son-Rise has so many incredible aspects to it. You know from reading the Son-Rise page on this website that Son-Rise is attitudinal. It is deeply rooted in love and respect for the child. We take on an entirely new perspective with Son-Rise. We work from a "Yes, thank you" premise, regardless of what might come our way. Everything is an opportunity! We learn to ask "What do I want?" instead of "What's possible?" We do this simply because "What's possible?" is a limiting, where "What I want" is expansive. If we are to fully embrace and believe in Danniah's limitless possibilities then we need to harness that belief and translate it into action.
We dream about the future to maximize the outcome of the present moment.
It really does matter what we think. Was it Buddha who said, "We are what we think?" Children have attitudinal radar. If you're angry, frustrated or annoyed...busy, harried or hectic they will want to move away from you, even if you have impeccable techniques. Have you ever talked to someone who is not listening? Maybe they are reading something or doing something online while you are trying to talk to them? You know that experience well, I'll bet. Kids have the same feelings, they know when you are not feeling loving. Kids with autism have heightened attitudinal radar-it's a bit like a blind person who has a keener sense of hearing. You can't fake it because they just know. This is certainly true of our Peanut. Long before I ever attended Start-Up I would say "It's all about energy with her!" Danniah has this uncanny ability to sense the very core of someone and she can do it in less than 15 seconds. If you are thinking about the 16 things that you need to do, or if you are frustrated or angry when you are next to Peanut, she is guaranteed to tell you a firm, "Goodbye!!" while waving. She is also very likely to become grumpy herself to boot. On the other hand, if you are present in the moment and you are loving, calm, open, playful, animated or silly--any one of those things-- she will be your new best friend. As Bear's says, "Attitude! Attitude! Attitude!
Son-Rise teaches some basic CBT principles: Stimulus > Beliefs > Response. So, something happens, our beliefs determine how we experience it the stimulus and we respond based on that experience. So, for example if a child is not talking yet, that isn't bad. It's just an experience. I'll give you a powerful example from our lives. Peanut was nonverbal for three years. She would say an occasional word but it would always disappear. We worked with a classical homeopath for a while and finally she began saying single words. In a fairly short period of time she had a fairly large number of single words. It was delightful to hear her request "Juice!" "Elmo!" But after more than a year, we still pretty much there. After attending Son-Rise and learning techniques for moving language forward, I came home determined to implement them. I realized that I worried that maybe she couldn't do more than she was already doing. She seemed to have mush-mouth on the moments where she would try to say three words at a time. We've heard theories around frontal lobe dysfunction, absence seizures, Landau-Kleffner Syndrome Variant...there were all kinds of things that created doubt in me around her ability to develop language. Maybe some of it was me. When I really looked at my own attitude it occurred to me that she was very likely reading my doubts and responding to my expectations (or lack thereof). Couple that with the fact that she was getting every last need met by saying just one word at a time...why would she say more? So, I arrived home readjusted my belief system, harnessed my 3Es (energy, excitement, enthusiasm) and really dove in with all my heart and soul and had an absolute BLAST Son-Rising language out of her. In one week (five days, actually) she was saying things like, "I want chips, Mommy, please." "Let's go beach!" "I want take a bath." Son-Rise works.
When children are motivated they have incredible capability.
Now you can see more of why we are so excited about this program. It's fun, it's loving, it's respectful, it feels good and it works. We can't wait to see what happens next! How about you?
There is no such thing as false hope.
PS--Thanks to my good TMR buddy Saint, I've added an email subscription link on the right of the blog. We'd love to have you come along for the adventure of a lifetime!