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Nurturing a Special Child

The Son-Rise Program

Jun 8, 2010

First of all, I am so thankful and touched by all the thoughtful and warm messages I’ve received since my last post. I also appreciate so much your explicit request to keep writing and share our journey and experiences. I’m happy you asked, because I realize that the road we’ve taken is surprisingly not very traveled. And in order for you to understand what’s going on, and how it works, and the paths and landscape where we’re headed, I need to explain to you the therapy program we have chosen for Joaquin.

Now here’s a caveat… What I’ll say here comes from my take on the limited and preliminary information I have been able to digest after watching most of the webinars available at their web site, going through all the resources in their starter kit, which includes 2 DVDs, 4 CDS, and 3 books written by Barry Neil Kaufman, co-founder of the program and first father to apply all these principles together. All these information explains the genesis of the program, the core principles, basic strategies, and real-life examples.

This weekend I’ll be traveling to the Option Institute to attend, along with many other parents, a week-long session where they’ll give us all the detailed information we’ll need to come back home and design and run a Son-Rise program specifically formulated around the needs, skills, motivations, and challenges of our particular child. So in a couple of weeks, I’ll understand the program in more detail. I’ll have specific goals for Joaquin. I’ll know better what to teach, how to do it, what to do when trouble arises, how to get help from others (my biggest personal fear), how to remain in the right frame of mind throughout the journey…

So what follows is my current interpretation of the method before actually going for the full-blown training. This is what I’ve been practicing and living with Joaquin for the last month, and even with incomplete information, today I can tell you about the significant progress we’ve observed in Joaquin in this very short time. It’s hard not to get excited about the destination. Truth is, the journey is also rewarding and beautiful every day.

The Road Less Traveled

Contrary to the traditional behavioral approach used to treat autism, the Son-Rise program begins by accepting without any judgment the “package of symptoms” exactly as it comes. By this I mean, autistic children engage in repetitive behaviors or exclusive activities (that although incomprehensible to us) they have carefully designed in order to tune off a world that is too much for them. The child usually has a sensory problem (vision, hearing, etc), something his brain doesn’t process as a typical brain does, and these behaviors help him find a safe place where he can be at peace, in control (even sometimes attempting to compensate for a physical disability), unfortunately for us, excluding everybody else but himself.

So this program begins with the notion that “isms”, (the exclusive and repetitive behaviors I’m talking about, known by others as “stims”) have a very important function for the child. He may not respond to requests, or play with toys the way typical children do… He may act more interested in objects than in people, and engage on seemingly obsessive compulsive sort of behaviors… He may not speak, and instead make “strange” sounds. And all of this is okay, when you believe that your child is really doing the very best he can. He is from a foreign planet, and is just taking care of himself. And he is happy where he is (that is, a child who has not been pushed to go against himself). He’s not asking to be rescued. WE are the ones that want something different for him.

And so, you begin by accepting all of your child’s behaviors without categorizing them in “undesired” and “desired” buckets. And this means, TRULY ACCEPTING. You must look at your child without a trace of judgment, even while he isms… Without hoping he stops… Loving him exactly as he is this very moment. Simply observing him with the respect and interest you would keep if you were a scientist studying a majestic and elusive creature in the wild.

Home-Based

The Son-Rise program is home-based, and if you are the parent of an autistic child, this makes perfect sense to you. Our children feel most safe and comfortable at home. Strange places are very threatening to our little children, and tend to shut them off or trigger meltdowns.

Parent Involvement

The program believes that parents are the best suited people to help their special children. Despite our pediatrician’s calming words, we had the gut feeling that something was off. We are the ones that know our children best. We love them more than anybody else. We’re the most patient with them. We have the highest hopes and wishes for them, and the strongest incentive to help. And we already have the strongest most meaningful connection with our children. So in this program, if we are willing to take the role, parents are the directors and main performers of our child’s therapy. We recruit and train volunteers to participate in our program. We are the experts. We run the show — if we choose to.

Attitude

At the very core of this program lies the belief that in order to work with a special child, you must have a very special attitude. Not only towards the child, but also towards yourself. Special children are extremely sensitive and react as if they could read our thoughts. They know immediately when somebody accepts them, or rejects them, when somebody is comfortable or uncomfortable around them, and when somebody is here with them, or distracted by other thoughts. Whatever is going on in our head shows through in our actions and energy, and special children pick on that extremely well.

So in order to work with a special child… in order to have him trust you and interact with you, you must be clear of mind, and come from a true accepting, non-judgmental, loving attitude towards him. It’s not enough to just love your child and hate his autism — you can’t separate one from another. It’s loving everything about him, specially the atypical behaviors that scream autism. And this sounds like a hard thing to do as a parent, until you do it and see the AMAZING way in which your child reacts. He opens up to you. He feels safe with you and starts to include you in his world. And don’t we all act this way?… Don’t we sense when somebody is not really listening to us? When somebody acts polite but doesn’t really like us? When we feel that somebody judges us secretly?… Don’t we love those that we feel are the complete opposite? Aren’t they our best and most trusted friends? Aren’t we willing to do almost anything for them?…

And we must apply the same accepting attitude towards ourselves. Because when you’re working with a special child, if you’re feeling that you’re doing something wrong, if you’re thinking you’re not creative enough, or fun, or loving, or patient, or anything else… If you’re thinking you suck… If you’re embarrassed, or feel guilty… If you’re loving your child but whipping yourself… he’ll know. He’ll know because you will be distracted. You’ll act like we all do when he think we’re sucking at something. Non-passionately. Unhappy. And that will get in the way between you and your child.

So we must feel happy. And here’s a way how this program is very special. They believe that happiness is a personal choice. I realize this is very hard to swallow for our critical adult minds… How can you be happy when your child is different? When you are sick? When you are grieving? When you lack resources? When you have a major problem? When you’ve been attacked?… And I guess we all have to read the book in order to understand and master the skill of changing our perspective and replacing our beliefs to achieve a more positive outlook on anything life throws at us. I am not all the way there, but have already experienced with the method and have been able to move on from situations that typically tend to crush me and take months to digest. I’m just a beginner, but have already witnessed the power of this principle.

Joining

Apparently a very controversial principle to critics of the program… Not only do you accept and love your child while he’s engaged on his routine of exclusive repetitive — incomprehensible to you, but not to your child — behaviors. You also JOIN him. So if Joaquin paces the room in circles while signaling numbers with his fingers and chanting high-pitched “mmms”, then I do my best to perform the exact same thing. And not as a fake imitation hoping it ends soon, hoping he looks at you and initiates interaction. You actually try to find for yourself the fascination in the particular activity. You really get into it. And when you do it, two things usually happen:

  1. You find something absolutely fascinating, and realize your little kid is actually brilliant for being interested in this. He may not have found exactly what you did, but you’ll think he did, and will be amazed.
  2. (Actually tends to happen when you’ve achieved number 1) Your child gives you a look or smile like few you’ve ever seen before. He is so happy to realize that you like the same thing he does… You’ll break through his walls, and he’ll know (and at some point, acknowledge) that you are there with him.

Joining is the way how you create a relationship with your child in his world, the one he feels most comfortable in. He shows you the way, and if you choose to follow him, you’ll show him the depth of your love for him… How far you’ll go in order to meet him… And he’ll be as generous as he can possibly be within his capacity to express his gratitude and love for you.

How It Works (at a basic level)

In words that I’ll never forget when I first started learning about this program, “Your child shows you the way in, and then you show him the way out”.

By joining and accepting your child without the pressure of your expectations, you’ll go into his world and build a strong relationship that he can digest, trust, and be motivated by. Then, little by little, and without pressure, you’ll attempt to sell him our world. You’ll be a fun, loving, trust-worthy, helpful ambassador of our world. He’ll be so motivated by his relationship with you, that he’ll make an effort (as big as he chooses) to learn things from you (like language). Little by little, he’ll become more flexible and willing to try new things. He’ll start preferring his interactions with you over the self-stimulating routines he has designed for his comfort. And all of this, little by little will help his brain regenerate or make the connections it needs to do in order to make possible the functions that are not currently developed in comparison to a neuro-typical brain.

This is equivalent to finding the source of a physical problem rather than just suppressing the symptoms. The method is indirect, and it follows the child. It will be fun for him because you’ll play 1 on 1 in a YES room where he has full control over his environment and you. All games will be designed around your child’s motivation (what he loves to do), or follow directly his lead. You’ll be energetic, exciting, and enthusiastic, and provide a social incentive for him to move out of his shell by always reacting positively to any tiny effort he makes, and by being so much fun. (By the way, typical kids love this attitude too — you should see how kids at the playground seek Joey’s attention).

When your child acts exclusive, you join him, give him full control, and become super user-friendly, ready to jump and serve at the slightest glimpse of interaction he gives you.

When he’s interacting, you teach. You give huge positive responses to anything he does to interact or become more flexible: You celebrate and praise all of his efforts and achievements. And when he interacts in his “old way” (e.g. screaming, using your hand as a tool, etc) you also respond positively. You don’t ignore these behaviors. You just act a little more dumb and slow in your responses. You still act helpful and loving and non-judgmental, while challenging him to step it up a tiny little bit. So when he does or tries just a little, you RUN to get whatever it is he wants! and CELEBRATE! so he experiences the power of social interaction.

Social interaction is always the goal. Academic goals are not. The autistic brain is great at academics already; it will have no trouble learning this things later, or even now, but never at the expense of a positive social interaction.

And here’s a big one… All along throughout this journey, your child will always choose whether he stays where he is, or he moves where you show him, and you must be okay with his decision. You must be okay, truly, with the possibility of him staying where he is. But this doesn’t mean that you give up your hopes. This concept sounds contradictory to some people, but I find it relieving. It liberates you from the expectations and pressure to achieve something over which you don’t have control. But it lets you enjoy the journey, hoping for bright horizons, while you appreciate the beautiful landscape you’re going through.

I must say, I still have not reached complete acceptance of the possibility of Joaquin staying exactly as he is (e.g. not developing an adequate attention span to go to school). Perhaps because I don’t believe he will stay this way. I’m not sure of how exactly he will be in the future… How many typical milestones he will reach (go to school, graduate, get married, have friends, etc)… But I can already see big changes in him. So I’m pretty sure that many good things will happen for him. His current state is very workable. He’s verbal, shows a great intellectual capacity, loves to be around people (although he may ignore them), and has a very strong and affectionate relationship with both Joey and I.

So in the absence of the ultimate acceptance level, the perspective that currently helps me reach peace and move along the process when my mind tries to separate from the right attitude is this… Love Joaquin exactly as he is RIGHT NOW… Be present and enjoy him exactly as he is.

This, I can totally do. He’s so sweet and loving… So beautiful… So reasonable (most of the times, anyway). Such a perfect little old soul, I’m so happy chose me as his mommy. And so, I am incredibly thankful to have found this program so quickly. Because from the very beginning of our process, I just wanted to rise to the occasion, and be all Joaquin needs from me right now. And this whole thing makes so much sense to me. It feels right. It fits so well with the big picture of how Joaquin’s autism fits in my life and family. It provides a great opportunity for me to grow and prove what I believe I am, and for the process to show me what I can be that I don’t already believe.

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9 comments:

  1. On Jun 8, 2010, Marla wrote:

    Sounds like an awesome program. Honestly, sounds like something many parents could take heed of. None of us knows exactly the milestones we’ll get to take part in in our children’s lives and so accepting them where they are right now sounds so logical. But logical doesn’t always mesh with our comfort (ironically, the place WE’VE created for OURSELVES, so we can manage OUR world.)

    Your post inspires me to try something different tomorrow with my daughter. I find I do more “spending time” and teaching from my vantage point than “joining” on any given day and there is such a big difference. I know that intuitively but it seems so hard!

    Thanks for sharing more about the program. I know you will get so much from the conference and just talking with other parents, who, while their experiences are different from yours, can affirm your experiences. Even if you need no affirmation, that connection is vital to your resolution, your continued confidence, a resource that is so precious, it cannot be valued.

  2. On Jun 8, 2010, Laura wrote:

    Mafe, el programa me parece muy interesante, además lo que tu explicas es tan lógico, intuitivo y sencillo. Se nota que ha sido construido con mucho amor y con base en la experiencia de cada uno. Es realmente inspirador te digo. Mil gracias por compartirlo con nosotros. No dejes de seguir enseñándome.
    Abrazos

  3. On Jun 8, 2010, Ivan wrote:

    Hola prima, te felicito por tu fuerza. De verdad que te admiro. Les deseo a ti, a Joey y a Joaquín, lo mejor que la vida les pueda traer a través de este viaje que empieza, y veo que tienes tanta energía y fortaleza que no creo que nada te pueda detener. Me parece que tienes y vas a tener la habilidad de inspirar mucha gente. Un abrazo.

  4. On Jun 8, 2010, KSR wrote:

    This philosophy has some very valid applications for people-people relationships on every level! How lovely it would be if we as adults could learn how to genuinely “join” in our communications every day ………Imagine relating on a real level w/o being preoccupied about other things, or being distracted by all the “noise” of cellphone, email, texts, work preoccupations, etc…….Keep sharing with us! I am inspired.

  5. On Jun 8, 2010, Vivienne wrote:

    Mafe – I didn’t get a chance to comment on your last post, but I wanted to say how amazing you are, for facing this so bravely and also for being willing to share your journey with us all. I know now that you are blessed to have Joaquin, who makes you aware of things you might not otherwise have noticed, but I also know now that he is blessed to have a mother with such a beautiful heart. Keeping you all in my thoughts and prayers!

  6. On Jun 8, 2010, Maria wrote:

    Oh wow!… You all are so beautiful and kind to me. Thank you so much for all the emotional support you’re already giving so generously. It really means a lot to me.

    I’m happy to see that this whole thing sounds right to you. I’m replying to all with this single comment because I feel that we’re all on the same page on something… This program sounds great to treat autism, but the principles, as many of you sensed, could also be applied with great positive impact in or daily lives… to feel happier, to give our children the best of us without it feeling like a sacrifice, to help manage our egos, to resolve conflict better, and have more fruitful communication with others…

    I don’t mean to sound like a preacher, and certainly don’t want to disrespect parents who may have chosen a different route for their efforts. It will never be my intention to infer that our program is the right one and others are not. Every person makes informed decisions and chooses the best they can for their own family. Everyone knows what’s best for themselves. And we all deserve luck in our chosen paths.

    Yes! I can’t wait for next week.
    I won’t lie. The trip is stressful. It’s perfectly designed to get me out of my comfort zone: No direct flight. Must rent a car or book a taxi service to get through the 1.5 hr distance between the airport and my destination. Will be sharing a room with a stranger, sharing a bathroom with more than one stranger… Some times I laugh at how this whole thing came to shake my floor. ME — Hermit antisocial Maria Stultz for all of you who know me personally — selling social interaction to my little boy. HA! HA!

    But I’ll do it. And I cannot wait to meet those others like me who I’ve been looking for during the last 2.5 years… I kept talking to Joaquin’s pediatrician about our challenges, and he was always all “oh, many many kids are like this”, and I was all “well! where are they?, because none of the people I hang out with or know have this experience”… I’m not trying to throw dirty water on my sweet little angel… Just reminiscing on the fact that I always knew he had different needs, and it will be truly refreshing to meet others like us.

  7. On Jun 19, 2010, Sylviana wrote:

    Looking forward to read on how your week went, I hope it fulfilled your expectations and more!
    Hugs,
    Sylviana

  8. On Jun 20, 2010, Maria wrote:

    Gracias Sylvi. I got your letter but couldn’t reply on time before leaving. Thank you for that.

    This week went fabulous. I have much to tell and share about it… soon… :)

  9. On Aug 14, 2010, Mafe Maria » Son-Rise in Action wrote:

    […] I’ve explained isms in an earlier post… And Joaquin isms a lot. He moves between isming and interacting, and I move back and forth with him. Here’s a moment when he became exclusive during the game and I joined him. Many times, I’ve just joined by imitating his actions while keeping an inner sense of love and acceptance for him and his actions. I’ve found that it is more fun, and it tends to shorten the length of the ism, when I go overboard trying to get into it and animate my face and words. In this specific one, he requests that I don’t join his “fx” sound. So I comply, and try to go for exaggerated facial expressions. At some point, he starts talking about eating turkey (our lunch that day), and I follow the topic while I ism, but pretty quickly I realize we’re approaching a “green light” as he takes pieces from me and repeats my words. […]