Thursday, May 27, 2010

Kinda Potty Trained

In the past month, we have made huge strides in potty training.  I wish I could share practical insight into how it has happened.  I have no idea...well, several ideas, but who knows which new thing, which combination of new things, which new thing plus an old thing... All I can say is that we have pee in the toilet most of the time!  Yeah!

I wrote about my own inner journey around this here.  Enjoy!

Wednesday, March 24, 2010

5 new volunteers! 8 people on Team Jaedon

Welcome Amery, Wanda, Leyla, Kashenna, Zeynep!  Thanks Rita and Guleraana for all you do!  I think we will have 26 hours of  playroom time once all the training is done. I wrote about it here and here.  Happy reading and tell me what you think! Just looking for 2 more team members and a speech pathologist who wants to really be on a play based, child centered team.

Friday, March 12, 2010

Relate To Autism

Here's an article I wrote in my Relate To Autism blog.  I blog there every Monday.  Go check it out and tell me what you think.

Friday, February 19, 2010

Happy Doctor's Visit

Jaedon  went to the doctor today!  I was (mostly) happy and comfortable for the entire visit!!  Let me give you some background so you can know how huge this is.

Jay is hypersentive to light and sound.  He has NEVER tolerated doctor's intruments being used anywhere near his body, especially the ones with lights.   This phenomenon did not mysteriously start with his autism diagnosis at 30 months.  This started at birth.  So, at 5 months old when he somehow scraped his eye ball with a finger nail, The pediatrician didn't have the privilege of actually seeing the scrape because he would not allow anyone to hold his eye lids apart to look inside his eye.  Honestly, 2 adults working together couldn't get a 5 month old baby's eye lids to co-operate.  The power of the human spirit with a strong intention!

So it continued though many doctor's visits.  I became good at explaining to the doc up front "No doctor's instruments please.  His ears and eyes are fine."  The doc got a quick look in his throat while he was yelling IF he had no instruments in hand.  As Jaedon grew, it became more dramatic.  Could there be a doctor's office with no instruments on the wall?  He would walk to the door, see the instruments and bolt back outside!  Over the years, I have created a fair amount of anxiety associated with these visits, and do them only when threatened.  I worried about the doctors, the nurses, the patients in the lobby seeing me chase him around, hearing him yelling, the children being traumatized by his yells ("Mommy, what are they doing to that boy?")  I was a wreck!

A threat from the social worker got me to the doctor today.  I did 3 really smart things for myself and I'm so excited that I did them!  First, I changed the pediatrician.  The last one didn't help my stress level at all  ("Mom, we can't not look in his eye just because he doesn't like it", meanwhile, 2 burly guys are restraining my son and he is starting to look black and blue from the fight...).  I found someone who has a child with autism, who also lives in our neighborhood.  Secondly, decided that no matter what, I would remain comfortable.  I took my instant be present = gratitude = happiness pill and voila!  I was there.  I decided that no matter what Jay did, I would act in Jay's best interest, not worrying about the people around.  I would talk to him and respond to him as if they weren't watching from the corner of their eyes and wondering about us.  Thirdly, I decided to take the other 2 children to the doctor next week.

Jaedon had his fair amount of suspicions....I ran around the office a bit after him, I spent several minutes cajoling him to actually walk into the medical room, quieting my anxiety with trust as I waited on him to decide, I fixed spilled brochures, took his temperature and pulse myself.  I had a great time!  The highlight of the visit was 2-fold:
  • Jaedon spent about 10 minutes examining the doctor's instruments!  He looked at the light, turned it every which way, flicked it rapidly from side to side, put it in his ear, I pretended to look in the ear and congratulated him for letting me.
  • The doctor let him do all this!!!  She didn't even blink when he whisked the gadget down and began his thorough examination.  I have to admit that in that moment, I was tempted with discomfort (How much do these things cost?).  Her calm helped remind me how useful it is to stay calm, though watchful, in moments like these.  I love this woman!
My learnings:
  1. Examine a situation for unnecessary stressors and change them
  2. The power of a clear intention is ... powerful
  3. Unpleasant doctor's visits today don't mean unpleasant doctor's visits tomorrow.  I can throw out the belief that all doctors visits will be horrible.  Not only am I growing and changing, but so is Jay!
Are you dreading something this week?  Change what you can, set a clear intention to be comfortable and believe in the possibilities.

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!