Wednesday, May 27, 2009

Giving or Taking Control?

I will let the article below speak for itself. It was written by a wonderful friend and son-rise program teacher, Julie Sando (

Sooo many times, our attempts to 'fix' those around us are really attempts to control them, and their interaction with us. Since I'm on this theme of loving acceptance, it has occurred to me, being controlled can feel very un-loving!!!

Many children on the autism spectrum have pretty big control issues. They like to be in control. They like to know what is happening and when. They like predictability. That is one reason they stim (or "ism"). They do things that create that predictability. They know when they line those characters up on the window sill, those characters will obey. They may ask the same questions over and over, looking for the same response. People on the other hand, are the most UNPREDICTABLE beings on this planet. If these kids are craving that predictability, it makes sense why they would relate more to an object than a person. What can we do about this?!The number one way to help our kids to become more flexible is to become the most predictable people we can be by giving them control!

What does that look like? -Become aware of how often you physically manipulate your child. Is it when you are getting him dressed in the mornings? Or when you are feeding him? Or possibly when you are giving him a piggy back you scoop him up without warning? Each of these times are times you can be more aware of giving you child control. First, EXPLAIN that you are going to help him put his shirt on. Then, slowly move about a foot away from your child and WAIT for them to come to you. Same with food...hold the spoon about six inches away form their mouth and WAIT...wait for them to come to you. Same with the piggy back ride...hold your arms out and encourage them to come for a ride. Then it is their choice...not ours. Not only are you becoming more attractive by being predictable, but you are helping your child build that pathway in their brain where they are making a connection with you because they decided to...not because we are forcing it on them. That's a huge difference!

Celebrate the NO's!!! How many times do you get disappointed or stuck when your child says "No"? This is something to be EXCITED about! They are communicating something they don't want...instead of sitting by themselves in a corner. They care enough to let you know! How exciting! And they are giving you a clear opportunity to give control, which in turn, turns you into a more attractive person to be with! The more you give control, the more your child will come to you because they want to. Try cheering them, sincerely, next time they say or indicate a no.

Exaggerate the control they do have. After celebrating them for saying no to that vegetable, take that carrot and fling it as far across the room as possible. Make an announcement to the pretend crowd in the room, saying "Ladies and gentleman, you heard it here first...there will be NO carrots, I repeat, NO CARROTS in this playroom! That's right, you heard Tommy, he said no! YAY Tommy!" Have fun with this one!

Be persistent. Once you hear that no, make a mental note that you've got your challenge! That's the thing to work on. No need to be stuck. Just celebrate, exaggerate control, follow your child's wants wholeheartedly, then try again a few minutes later. That's all there is to do!

Sunday, May 10, 2009

More and more on this issue of acceptance...

I've been thinking about this a lot. Maybe it's a sign of where I am personally. I have to admit, that although Son-rise teaches 'acceptance' as a foundational attitude, I don't think I really got it. Oh yes, I did accept my 2 year old son and the various differences between him and other 'typical' children, but I think it was conditional acceptance. After all, I'm going to fix him.

So his not being 'fixed' at 9 was a gift to me, to help me look back at this issue of loving acceptance. And I keep looking at it. This morning, he was drinking some juice and drooling. I didn't accept that. I felt my rejection of it in my body, the quickening of my heart, the tension in my shoulders and chest. Well, at least I recognise those signals as information for me. So allow me to explore my beliefs with you.

Why would I be uncomfortable about Jaedon drooling? Because I don't like how drooling looks... well, deeper than that, I don't like how drooling is perceived by others, like he is some kind of incomplete person. OK, let's say that this is true, and that people will see him this way, why do I feel uncomfortable about that? Well, if they see him this way, they won't love him like I love him. (note: even if he wasn't drooling, they all probably wouldn't love him like I love him, but let me not interrupt myself yet) Who are some examples of the 'they'? Family, my friends and the people on his team both now and in the future. Actually, it's more than that. Family and friends wouldn't love him because I haven't done everything to make him lovable. And, they would judge me for the things they are uncomfortable with. Without any more questions, I know that I also judge myself as inadequate, so Jaedon's drooling is somehow a sign of my own failure. My failures are reasons for people not to love and accept me...

So my fear of not being loved and accepted has me not loving and accepting my son... hmmm...

Whoa! OK, lots going on there, but these aren't new revelations for me. So let me sit with this for a while. Those voices of judgement are my own, and they are competing with the other voices that are now stronger than they were before, the ones that say "Every day in every way, I am getting better and better". I am an ever changing organism, created to grow and improve, committed to that path for myself so I know I'm always improving. I accept me today. I accept who I am on this journey and I don't have to judge my growth to motivate myself to improve. I improve because I choose to, not because I make myself feel bad. I celebrate the small steps and the big steps I have taken to move myself along this path that I want to be on.

I appreciate the motivation that Jaedon is for me. I am focused on loving him just as he is. While I want change, change is not a prerequisite for loving him (or anyone else! but that's for another blog). No matter what others think of me, I love me. How can I love my neighbor as myself, with such conditional self love? As I love Jay and love myself, I can then freely want him to not drool. Not because I want to be loved, to look like I'm doing a good job, or other loaded implications. I can just want him to not drool because I think saliva has more benefit to his body in his mouth, because his lips open signal weaker muscle tone in his mouth area and that will affect his articulation and I want him to communicate clearly (and not because clear language says anything about me!).

I can love me, work on keeping that belief strong, love him, work on keeping that belief strong and therefore freely want, but not NEED change, because it means nothing about who I am.
No matter what situation our loved ones are in, if our actions to them come from a place of needing to fill something up in ourselves, I think it might feel fake, disingenuous, manipulative, even. Certainly, you can't fake it with kids on the spectrum. But can you really fake it with anyone? Is this why some of our connections are as shallow as they are? Hmmm....

Monday, May 4, 2009

More on being REALLY Accepting...

We had a a few days of intensive training for Jay's team, and a pretty intense playroom experience for him recently. We discovered a new level of loving acceptance for Jaedon. I had to think about being really accepting, really wanting to realte to what is, not just rush through it to what I want. Below is a comment from one of the training facilitators, describing the experience and some of her learnings. Enjoy!

I had my most incredible joining experience EVER last week on an outreach. I feel like I got joining and acceptance at a whole new level I didn't know existed. I thought I was accepting this whole time. And I was, but I had defined acceptance differently. I was accepting, and still wanting more. I now realize, that is not really acceptance! I typed my experience up and thought it would be cool to try with xxx as well. I got soooo much out of this experience! Enjoy!....
I was thinking about how our kids ism because they are looking for predictability and they stay away from people because people are sooooo unpredictable. I was joining a little boy and realized that even when I was joining as exactly as possible, I was still unpredictable....he would break from his ism to move my hands, or I'd accidentally swing my arm and tap his leg, I would go to a different window each time he went to a different window, and occasionally he would move away when I joined, etc. So I decided to make myself the most predictable I could.
He likes rhythm and repetition and singing tunes (sound familiar?!). So I picked one rhythmic tune of 2 notes and for two hours I sat completely still, humming these notes! He did his ism, and I did my own predictable ism. After a few minutes he came over and started exploring my face, looking deeply into my eyes, smiling, laughing, giggling...I continued with my tune, every once in a while giggling with him. I also stayed completely still. I noticed when I broke from the tune or moved, he moved away. He went in and out of being exclusive and coming toward me. I realized, sometimes when he was looking at me I was doing things to try to keep the interaction going. I was wanting him to stay connected. Building. I'd laugh, or I'd peek around his arm to catch his eyes. He went away each time I tried to keep it going. Then I realized my point is to be 100% accepting (without wanting him to be different) when he is with me and when he is not with me. So each time he moved away, I cheered internally that he was giving me the opportunity to be 100% accepting without wanting anything to be different. All while doing my same rhythm and sitting still. He spent lots of time exclusive and I kept telling myself to keep being predictable, not to try to get him to connect, but to really enjoy who he is in this moment and to really enjoy my ism.
This is a boy who does not poop in the toilet. He will hold his poop until he is alone, then he will hide and poop while standing up, in his underwear or pull-up. He will hold it for days if he can not hide. You can see when he is holding it. He tenses his body, stands in his pooping position, and holds it in. He assumed his position. My first thought was "This is the time to encourage the toilet!"....Then I realized "This is MY preference. Not his." I dropped my preference and totally accepted that he was holding his poop in. I continued with my rhythm, sitting still, loving him. He plugged his ears (which he does from time to time). So I stopped my rhythm and sat in silence, totally accepting him, not even wanting him to be different. He pooped in his pull up! In front of me! Inside I thought "That's amazing! Excellent!... Now it's time to change him." Ah-ha, this again was MY preference, not his. I continued to sit in silence, expanding my definition of acceptance. Then he came to sit next to me on the bed. Again, my first thought was, "Uh-oh, that poop is going to smoosh all over and make a big mess to clean up." I was aware, yet again, that was MY preference, not his. He didn't seem to mind it. I dropped my preference. He started laughing, giggling, looking in my eyes, cuddling with me!!! He doesn't cuddle like this typically. I wanted to eat it up and hug him back. I realized, that would make me unpredictable...that would be MY desire. So I smiled, quietly cheered him, showed him my love through my face, and stayed quiet and still. Then, he took my hands and put them around his back! He initiated me hugging him! WOW!
I told myself, this would be totally okay if he decided to ism right now and that I wouldn't want it to be any different. I felt so fulfilled that I had gotten what true acceptance is. Then, he initiated a tickle game by saying "Tickle!" I tickled him. We laughed. I paused after several tickles and celebrations. I was aware, usually when I pause, I am pausing to request. I decided to pause, without wanting anything other than what he wanted to do. Again, he said "Tickle!" We continued this game for several minutes, laughing hysterically, connecting in the deepest way.
So I decided to make this experience a standard part of Team Jaedon training. We had a 'No Fixing Jaedon' week, and everyone new will have a few days of 'No Fixing...' before they move on to anything else...just to make the point, that even if he makes no additional progress, we totally love and accept him just as he is!

Saturday, April 25, 2009

How Big is Your Platform of Acceptance?

Here's a great video from Greg, another parent running a son-rise program. Very insightful. Being with Jaedon in this loving, non-judgemental way really highlights how often I am NOT being loving and accepting. We are so used to making, cajoling, bribing, encouraging, ...people to do what we want, that acceptance seems like a totally foreign idea. Yet, how would it be if all our relationships were like this? Thanks, Jay. There is soo much to learn, so much I get to learn because you are in my life.

Sunday, March 15, 2009

Spontaneous Language!!!

This was very exciting for me, so I wanted to make sure to document it. Jaedon was crying and fussing quite a bit, and I was working on being the happy detective, offering him options, yet letting him know that I wasn't sure what he wanted. Finally, after he had calmed down somewhat (he was now wearing his Miracle Belt, a weighted belt), I told him that next time he was feeling like that, he could say "I want..." but before I could say "belt", he filled in "butter!". I was surprised, but I celebrated him wildly, and off we went to get the sunflower seed butter in the kitchen.

Sometime later, we were in the kitchen, and I think I was getting him (more) butter and I said, "you know, you could tell me 3 words" and looked at him expectantly. He smiled knowingly and said, "I want butter!". You can tell I was pretty excited!

Later that day, he was having his smoothie, which he calls 'milk', and we were practicing saying 'milk' clearly. I had poured his smoothie, and he now wanted me to add his powered vitamin to it. I looked puzzled, and he opened the cupboard and said his version of 'vitamin' (something like 'viykami'). Then he told me 'open', then 'stir', all spontaneously!

Then today, he was hungry (a lot of talking around food, huh?) and I was giving cereal. So I started prompting him "If you want your cereal, you can say 'I...' " and he chimed in "want eat!" Very appropriate, I thought, even if it wasn't the word I was looking for!

Enjoy talking with your special person this week. Celebrate every sound and word they say!

Monday, March 9, 2009

Kids with Autism and the Typical School Setting

I found this blog post and I'm just going to quote a bunch of it, give you the reference and you can go read it for yourself. The author, Lisa Jo Rudy, put my thoughts in words so much better than I could have. Jaedon was in a public school setting for 3 years and although I knew they were doing the best they could, it wasn't best for Jay. As I speak to therapists and teachers, I realize that there is no single clear understanding of autism, as their is of so many disorders. No 2 children look alike and managing in a classroom setting can present challenges. I won't say anymore. Read what Lisa says: (

The IDEA is a terrific tool for including and accommodating the needs of many children who, in the past, were wrongly separated from their typical peers. It's a poor tool for including and accommodating the needs of children with autism. There are several reasons for this.
Children with low vision, or dyslexia, or other similar disorders were, before IDEA, excluded from the general classroom. Because their needs are well understood, and the same needs generally translate from one child to the next, it's relatively easy to help those children to successfully integrate into the general school population. All children with low vision need accommodations to either help them see (preferred seating, large type) or to substitute for sight (braille, audio books). All children with Dyslexia need extra help with reading. It's not unreasonable to provide a reading teacher for kids with Dyslexia, or a resource library of large print, audio and braille resources for children with low vision.
Children with disorders ranging from ADD to deafness are socially fairly typical. They are able to learn through imitation, pick up on body language (or tone), and connect with other children naturally. They usually want and need to fit in. In general, too, they are able to tolerate the ordinary noise, smells, sights and/or sounds of a large school setting.
Contrast all this to the child with autism.
To begin with, there is no "child with autism." Each child with autism is completely different from the next - not just in the ordinary way that people are different from one another, but in significant ways that have a huge impact on appropriate education. One child with autism is brilliant but prone to severe behavior issues. Another is non-verbal, mildly MR, and not yet potty trained. A third suffers from a seizure disorder and is easily upset by sensory overloads. Clearly, these children don't need - and in fact can't tolerate - the same academic setting. This means that every individual child with autism needs his or her own, unique program. No resource room, specialist, therapist or teacher can accommodate "autism."
Secondly, and just as importantly, the IDEA (appropriately, in most cases) begins with the assumption that children should be included in the general educational setting as much as possible. For the child with learning disabilities, physical disabilities, ADD or even MR, this really does make sense. These kids are socially as competent as anyone else, and as desirous of fitting in. But in the case of kids with autism, general inclusion (usually mainstreaming) may be a lousy option. That's because kids with autism are NOT socially competent, and may have no desire to fit in or make friends in the usual way. They tend to be victims of bullying - and often gain nothing but anxiety from the supposedly positive experience of mainstreaming.
When the child with autism doesn't do well in the generalized setting - a fairly common occurrence - there's no good place to go from there. The "autism support room" can't possibly accommodate the needs of all children with autism, since they're all different from one another. The "special ed resource room" is an even worse fit.
Where should the school place children with autism who can't thrive either in a general classroom or in an "autism support room?" In my opinion there are no easy answers to the question. And it's because of this reality that public school just doesn't work for most kids with autism.

Saturday, March 7, 2009

Melody of Autism!!

So much to learn! So much to share!! I've decided to host an autism awareness event and fundraiser. I don't want to scare people about the rising numbers of diagnoses and the tragedy of a one size fist all approach, or anything like that. I just want to celebrate and encourage others to do the same. So much more happens when we can find joy.

So, more details to follow, but the event is called the Melody of Autism, on April 18th, 3:30pm in the NE Bronx (972 E 227th Street, Bronx, NY 10466). We will have celebrations in song, dance, instrumental and poetry, as well as commentary from parents and others who have worked with children on the spectrum. We are putting together a wonderful resource booklet and we even have a dream gate prize: a $250 gift certificate to Buttermilk Falls Inn and Spa (they have an amazing spa! The hot stones we wonderful!!). Contribution will be $20 at the door. I will post flyers and location details very soon. I hope to see you celebrating with us!!! Tell your friends!

Break The Watch!!!

I've been thinking about breaking my internal watch. So many things are driven by time! I think time is a great construct, but can I just have it there are a structure, like the walls in my house, and not think about it all the time? The more I think about time, the less present I am. When I have lots to do, it's hard for me to settle down to give time to 'slow' tasks, like being in the playroom or reading to my kids. Don't get me wrong! I'm much better than I was. I just wan tot continue being aware that time is just a structure and that I'm in control.

I want to just be. Be in the playroom and say to Jay, "I love you just as you are and for as long as you are as you are". Even thinking that thought is so calming and centering. No stressing about his age, about the apparent regression in potty training, about his increased motivation to get what he wants (and the thoughts of aggressive behaviors). I know that the scare tactics don't really work and scared isn't the way I want to live my life!
Thanks so much for being on this team with Jaedon. I encourage you to get really good at breaking the watch and being in the moment. Whenever you hear yourself wondering how long Jay will just sit there on the bed, or how long he will pound his shoulder with the straw, slow down and think how much of a blessing it is to be with someone and love them unconditionally. Let's all practice getting rid of our checklists in the playroom. Let's evaluate ourselves after we get out of the playroom, knowing that we are always moving from a point of good to better, NEVER from terrible to not so terrible.

By the way, this works with everyone in our lives. Imagine showing love in all our relationships this way!

Tuesday, January 20, 2009

Acupuncture and Jaedon

Just a quick note: Jaedon is going to start acupuncture soon! I have has the good fortune to meet an acupuncture practitioner who is has a son with ASD. She is willing to treat Jaedon, so we did the initial consultation today. She came to my home with her mentor, a very compassionate man who teaches acupuncture, treats many kids with autism and who also has a son with ASD. I cannot describe how much I appreciated that home visit, since taking Jay out has become very time consuming and difficult. A 30 minute appointment can take up more than 3 hours of life. I'm looking forward to starting and seeing how it goes. I'm really hoping to help him relax so that he can spend more time just playing. So much learning happens with 'just playing'.

Monday, January 12, 2009

The Gift of Joining

I went into the playroom today! Yeah! Today is the first offical day of Jay's program for 2009. We took a break from his birthday until yesterday, about 7 weeks. It was wonderful for me to spend time exploring my thoughts, not needing to train anyone, to give any feedback or anything. I recharged over these past few weeks, and now I have my attitude in place, my 3 E's on my belt, a new list of potential volunteers going through and I'm ready to go.

I was training a new person today, and went into the playroom half hour before her scheduled arrival, since I hadn't been in for a few months! Jaedon and I had a great time playing with lotion. I would say he was moderately interactive, perhaps a 6, on a scale of 1-10. He worked on saying the word 'lotion', approximating it as 'who-shah'. The 'L' sound is challenging. I should reseach some tips on helping him with that. Anyway, I worked on NOT being on an agenda with him, just joining when he was being repetative, being user friendly and helpful, and challenging him to say 'lotion' as often as he would allow. In that moment, it was just me and Jaedon, him doing whatever he wanted, me loving him. What a gift it is, to be with someone that way! No judgements, no agenda, just wanting to be there with him. It felt great, a wonderful loving thing to do.

So many volunteers in our program have struggled with joining. They may feel like it's a waste of time, or wonder if they will miss an opportuntiy to interact. Today, I found myself explaining it as 'being in the rhythm of someone's life'. Jaedon has a flow and music all his own. When I join, it's like I get into that flow too, and we are like 2 bouys bobbing in the same wave of the sea, 2 migrating birds in flight. The goal of joining is to build rapport. What better way to do that than to completely be available to just ... be? In this comfortable place, with a beautiful connection being built, I will know the right time for interaction. Yes, I know the signs to look for because of trainings and consultations, but I don't mean that. I mean, I will know because it will just come to me, like a poem comes to a poet, like the solution to a problem comes in an "Aha" moment to a mathematition, like the location of a bug used to come to me when fixing computer programs (in a former life). I can trust that this knowing will come, so I can just let go and join.

As I connect with Jaedon this way, I get a deep sense of what it must be like to give this gift to others in my life. I think I'll add that to my list of new year's resolutions. You should try it too.