May 26

This update is for the past two weeks. We got 23 hours 2 weeks ago and then this last week was 15 hours and 40 minutes. Pretty amazing that Carl and I can leave the country for a week and the program still continues. Everyone is alive and well, and Carl and I had an absolutely wonderful time in Venice. It is also really great to be back and able to snuggle with my girls. 

Before the trip, I went to my first Zumba class. It was a great workout and lots of fun and it was a really good reminder about how it can feel to be learning something new involving physical copying and coordination. It affirmed for me how important it is that we encourage and celebrate Sarah for each of her attempts to copy physical movement or join in a physical activity. It can be a big deal and take courage to try. And sometimes we think we are doing one thing with our body but we are really doing something else. 

A few weeks ago when Mom-Mom and Pop-Pop were visiting, Sarah somehow started a game about how Pop-Pop didn't have any peas. We would react largely in a way she thought was fun and so the game has grown. It is always Sarah that spontaneously adds to the list of what Pop-Pop is missing. Poor, destitute Pop-Pop apparently has no peas, toothpaste, mirror sunglasses, ladders, stripes, fish, stairs, milkshakes, milk, pants, eggs, flossers, beds, sheets, blankets, or houses! He has to live in other people's houses! Sometimes Mom-Mom is also missing something and other times when I ask, "what about Mom-Mom?" Sarah answers, "don't...know." As this interaction has progressed over time Sarah has corrected her initial "Pop-Pop don't have any ..." to "Pop-Pop doesn't have any..." Amy has now started to add in her own rendition of Sarah's phrases with great glee.

Before we left on our trip we read Olivia Goes to Venice several times. Sarah can clearly say "Ve-nice" and "I-tal-y." She also told us we would be gone "a whole week" and that we would "eat pizza, ice cream in Venice." With that send off we had to indulge in pizza and gelato!

During one of her sessions with Sc., Sarah spontaneously and correctly indicated left and right while playing on a bridge they had made (referencing a bridge in a Dr. Seuss book).

One evening after a long day during our absence, A. was sitting on the sofa with Sarah. He was perusing his phone and not paying much attention to her while she was talking (it had been a looong day; we all know that feeling!) and at one point Sarah reached over to cover his phone and said "look at me." !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I love this so much and for multiple reasons. I love that she is so comfortable with eye contact that she was seeking it out and clearly asking for it. I also love that it happened at a time when, if it had been me, I might have judged myself and thought I should be interacting with my kid, but out of that moment came Sarah's wonderful response, which wouldn't have happened if A. had already been looking at her. So it is a good reminder that while we are helping Sarah, it is also ok to not always be 100% on; she is the one ultimately driving her own bus and taking herself to each new level. We are just very enthusiastic backseat drivers. 

Another moment that taught me something happened the Wednesday before our trip when Sarah and I took Amy to daycare. The night before, I had listened to a talk by Becky Blake (www.creatingsuperkids.com) that discussed how long some kids need to process a request and that if we repeat a request too soon we actually short-circuit where they were in their processing and they have to start over. So when we got to daycare I would prompt Sarah to do something such as get out of the car or go through the door. Then instead of re-prompting 2 seconds later (because those 2 seconds might have felt like a minute) I counted in my head. I never got past 15 or 20 seconds before she completed the action of her own accord. If I hadn't been counting internally that time would have felt like forever. As one of my best friends lovingly reminds me, "patience, grasshopper." 

Venice in a nutshell... one of the craziest, most wonderful places I have ever seen. I love small streets in between old houses and Venice takes that to an unparalleled extreme. It reminded me of the movie Labrynth. Often we would think we were coming to a dead-end and then discover more streets that were invisible from a distance. Other times we would expect more options and instead find ourselves with no choice except steps into a canal or to turn around. We stayed at a lovely hotel that was only a 5 minute walk from Rialto or from Piazza San Marco, 2 busy hubs of activity, and yet our street was very quiet. We were also 30 seconds away from a delicious restaurant that was quite visible on days when they were open and completely gone without a trace on the days they were closed. Gone. As in, no sign, no menu outside, no way to ever guess a restaurant existed. 

Carl rowed in the Vogalonga, a festival-type regatta where they close the canals to motor boats for part of the day. Thanks to connections made by one of the Pittsburgh rowers who is from the Netherlands, Carl and 4 other rowers from Pittsburgh were able to borrow a boat from the Netherlands team. The day before the race they practiced and took the spouses who had come along out for a ride. Totally wonderful. It was beautiful and it was also wonderful to see how the communication and coordination worked so well among the rowers. The Vogalonga itself is a very long race and with 1700 boats or so, things got rather backed up at various points. Carl even made it into one of the newspapers! His boat was in a picture of one of the traffic jams. 

We did lots of walking, lots of relaxed eating, lots of laughing, lots of reading, and lots of sleeping through the night. We went to a concert of Vivaldi's "Four Seasons" that was probably one of the best concerts I have ever attended. It was in a small church so it was an intimate setting with excellent acoustics. In one of the museums we also accidentally and fortuitously happened upon a harpsichord duet. So much of Venice is still at least 500 years old that I really felt like we could have been there during any time period and it would have felt similar.  The history, age, and ornateness of some of the buildings was staggering. I have never seen such beautiful mosaics as they have in the Basilica of San Marco. And I have never seen such gilt ceilings with paintings covering every inch that wasn't guilded. If you ever get the opportunity, I highly recommend going.

May 12

This week we got roughly 29 hours. We've had some exciting moments, but the salient feature of this week for me has been lots of thinking. I have been thinking a lot about time. We are giving Sarah the gift of our time. Our Amy volunteers give the gift of their time. What do I want for Mother's Day? time. What do I not give myself much of? time. With the last question what I really mean is that I don't give myself much time to reflect on things and question my beliefs (using the Option process) as much as I would like. So this week I decided to spend more time letting myself just think.

Sarah has been amazing with the marble run game recently, in part because I changed my responses and requests. She often points to a picture on the box and says "that one" but then starts building something on her own. Lately I have been asking if she really wants to build "that one" and telling her she'll have to follow my instructions if she wants to build it. Twice she has stayed with me, with some reminders, and built a complicated marble run 95% on her own, with my guidance. That takes both dexterity and attentiveness. 

Carl noticed an improvement in her saying the alphabet with him (not just on her own). When we really clarify specific goals and the whole team works towards them there is always improvement. This helps me realize again and again how important my own clarity and direction is in terms of helping Sarah. 

I had a consultation/dialogue with M. on Monday and was able to notice how much I have felt I need to control Sarah's progress and healing in terms of eating, leg rashes, and potty use during the night. I let go of a lot of that, especially my need for speed, realizing that it is Sarah's journey. That night marked the first time ever for night-time potty independence. Coincidence? Or because I let go? Perhaps this is more evidence that the more I clear my own stuff the more easily Sarah can flourish. Dang/Yay!

I have been noticing how I still have layers of internal stuck spots of feeling like I need to fix Sarah and need her to be normal and need that to happen soon and at the same time need to be perfectly loving to help her get there. I have been fundamentally believing that if only I did a better job then she would be normal already. And that this is the goal. What if that isn't the goal? What if the goal is to be really present and loving and accepting, while having the goals of helping her develop and learn for the sake of being the best Sarah she can be? I know I come back to this theme repeatedly and that is because it is the crux of this whole business. Can I have a goal of Sarah being typical while at the same time not needing that in any way? and why do I feel like I need it? want it? 

At least once a day Amy has a time of crying broken-heartedly about needing help. I so understand this. I think that is what I do when I am feeling like I should be doing more. I'm inwardly a similar broken record about needing help and a similarly frozen person, not moving forward and just feeling yucky. With Amy I can give her compassionate space for the feelings (most of the time) and trust that she will move through them and then be her amazingly capable self. What would happen if I could give myself more space to be where I am, knowing that I always do move forward? that has to be the start. I attempted a small dialogue with myself (please read gently)...

what if the program you are running now is enough?

that brings me back to the deep belief that it's not enough and that I should be doing more and that there is something wrong with me that I'm not. 

Why is it not enough? what would be enough? 

enough would obviously be whatever is needed for Sarah to be typical by the end of the year. 

why by the end of the year?

because we have to hurry! It has to be soon so that I know this is the right path

so only the end result of normalcy will tell you this has been the right path?

apparently.

Sarah's learning to speak and connect more socially, what of that?

well, yes, the path worked well for that. but what if I had done something more that would have helped even more? or if I could only do SR even more fully and perfectly then it would be the right path. so it can be the right path but I might not be doing it right

why do you believe that?

because then it gives me the illusion of control

why does S need to reach a certain level of development for you to feel ok about yourself?

because I'm Jenny and I'm supposed to have perfect kids; this wasn't supposed to happen with S having delays so we have to  hurry, hurry, hurry to fix them - in a relaxed loving accepting way of course. :)

what if S never progressed further than she is today? could that possibly just mean that she never progresses past where she is today? and not reflect on you as a parent or person or your abilities?

I'll work on it. Not there yet to let myself off the hook that easily. because if I accept that then maybe I won't keep working to improve the program and myself

do you believe that?

I might actually relax more and not try so hard with some things, which I know might actually be beneficial in some way. I think if I accept things as they are without needing them to change then I'll actually have more energy, but I still feel an element of wanting to peek to see if accepting is the trick and then she will be normal faster. So a belief to affirm is that it is 100% ok if Sarah doesn't change at all from this day forth. 

I feel kind of stuck with this dialogue. Maybe this is why people pay other people to help them! As I reread it a few times I can see that there are other questions that I could be asking of myself, but I'll keep those for another time. It is still quite clarifying to see where I am feeling stuck and notice that those are beliefs that I could decide to change. 

One more thing that came up this week was that another parent of a kid who isms (but not a Son-Rise family) said they were told by the NACD (National Association for Child Development) that isming could damage the nervous system because it reinforces non-typical neural pathways. When they stopped their daughter from isming, and presumably implemented the other recommendations of which I have no information, their daughter progressed quickly and dramatically. With this information I felt thrown for a loop and started questioning if my chosen path was the right one, etc. Upon giving myself time to explore this more and ask myself what I believe, I came back to my deep belief in the Son-Rise Program. Some of the people in this world who have done some of the most amazing things in terms of helping people are Bears and Samahria. I want to follow that path and trust it and jump in with both feet. I want to embrace Son-Rise even more thoroughly. This means doing more dialogues and giving myself the time to become clearer. Bears has said that there are many different ways to climb the mountain and that it is most effective to choose one and embrace it fully. So, while I will incorporate things (such as GAPS) that can supplement Son-Rise, I am not looking to change my path. If anything it's time to get out the map again and make sure I'm using all the guidance available. My time is precious and if I am going to spend it reading and watching videos to learn more and be inspired to be more effective then I want to spend it doing Son-Rise related reading and viewing. And I can let other parents choose their own paths without needing them to do SRP to help me feel good about my choices.

Before each SR training course there is a questionnaire and one of the questions posed is something about whether it is more important to me that my child recover or that I run the Son-Rise Program. The first time I answered recovery. The second time I might have had the same answer. The third time I think it was the SRP. With some fears that I'm still not doing it "right" (whatever that ultimately  means), I realize that my answer now is running the SRP. I happen to believe this is one of the best ways of helping Sarah. I also believe it is the way to help me have the life that I want and clean out the emotional cobwebs. While I want the absolute best for Sarah, I want that to the inclusion of what is best for the rest of the family. The rest of us matter too. I would really like to step off the hamster-wheel of cycling doubts now (this involves questioning and fearing more than questioning and answering). I see that the only way to do that is to choose to do it and have hopeful faith that I am steering this ship in the best direction. 

I know I come back to all of these themes and thoughts a lot. I share them because it is where I am on this journey and I want to remember it. 

May 5

This week we got 13 hours and 45 min. This past month has been rough in terms of getting regular hours. It was just a month ago that most of us were dealing with a tummy bug; 2 weeks ago Sarah had the episode of anaphylaxis, and now this past week Sarah, Amy, Sonia, and one of our volunteers all had colds bad enough to cancel most SR hours. Sarah is also dealing with seasonal allergies that sometimes are so intense that even Benadryl doesn't do much. We have some new options to try and the worst seems to be over, but it all resulted in a week that didn't have much SR time. Somehow I have managed to stay healthy this time around and I hope that can continue. As with other times when Sonia has been away, it is a good reminder of how helpful her presence is. I can do the housework, etc, but then I'm not spending as much time with the girls, and I'm not getting my usual number of SR hours, never mind the SR hours that Sonia usually does. I'm looking forward to everyone being healthy again.

I am also looking forward to a handful of potential new volunteers. I signed up for a service through ASD Climber that matches families running Son-Rise Programs with people who want to be Son-Rise volunteers. Within a week of my posting an ad I had 4 inquiries, two of which are strong possibilities and I'm interviewing them today. So if any of you who read these updates ever want to be involved (or know someone who would like to be involved) with someone's Son-Rise program let me know and I can get you connected to ASD Climber and I can post on the Son-Rise Facebook groups. There are Son-Rise families all over the world.

Sarah understands and repeats language so much more rapidly and clearly than she used to. Yesterday Sb said that she was going to take a friend to the airport. A moment later Sarah said, "take fend to duh air-port." I want to be clear that Sarah is not and never has been echolalic (repeating what she hears without spontaneous creation). She repeats a lot of what she hears but she also creates new phrases or uses old phrases at new times. It is thrilling to me how much she tries to say any new word or phrase that she hears. 

Another exciting moment that shows how much our little sponge absorbs happened yesterday. I brought a lilac bunch into the house to see if that was problematic for Sarah's allergies (we seem to be ok). Sarah looked at it and said "fuh-lower." Then she pointed to the stem and leaves and said "stem... leaves." Sb has been drawing flowers and explaining the different parts while drawing. I love that Sarah could understand that so far as to then apply it to a real flower. 

I have been noticing how I can handle certain things the kids do much better than some other things and I'd like to get more relaxed across the board. When Amy is asking for help moving a large stack of books that she just created, I know that she can move the stack the same way she made it and that she doesn't need my help. So I don't help and she cries buckets and buckets of tears and I stay relaxed because I know my response is actually reasonable. This points out that the times I get more flustered I must be doubting the reasonableness of my responses. When it comes to potty times or meal times or dealing with middle-of-the-night anything, I am much less relaxed and get much more annoyed at my children because deep down I feel like I don't know what I'm doing and should probably be doing something different/better. This week there was a lot more time of just the girls and me. One day around a meal time, and with both kids wanting things and being upset, I just had nothing left. I sat in front of the fridge (to block Sarah's repeated attempts to get something I didn't want her to have) and the girls sat on my lap and we all cried together. I was actually sort of pleased that I could soften into tears instead of yelling at them. Plus my crying definitely got their attention and I could talk about how sometimes I feel sad too and that that is ok. 

We have so many amazing moments and so many wonderful times when my heart is full of the wonder of my girls and our amazing life. And there are so many times when I am tired and don't want to be running this restaurant for tiny people and I don't want to hear "hep, mom...hep, mom" (help, mom) a million times an hour from Amy and I don't want to have the circular conversations with Sarah asking for something she can't have for whatever reason but she just keeps asking no matter how much and how differently I explain or how much I don't respond. There are times that I can (and do) handle all the mess, requests, tears, yelling, etc with grace and ease and no ruffled feathers. And there are times when my feathers are down right bent. I'm not sure where I am this morning. Maybe I'm in the middle. 

May your feathers be easily where you want them.