January 31

We have an 8 year old! How is that even possible?!

Last week I forgot to share that Sonia did an SR session with Sarah that involved doing yoga. After their session they came downstairs and showed their poses to me. They did downward dog including lifting each leg in turn, happy baby, butterfly legs, straight legs and putting their noses toward their toes. Adorable and amazing.

Whenever I notice that I'm not feeling super happy I remind myself about our reading program and how successful it is already being. That often helps me refocus on joy and find new energy. Sarah is learning new words as rapidly as I introduce them. She only gets 5 new words a day, plus the repetition of words from previous days. I have now put the box of retired words in the SR room so she can look at them if she wants. 

Words that we have covered so far, most of which she knows when looking at the large cards:

mail

night

Dora

Boots

Troll

Map

delivery

red

her

spokes

brakes

bicycle

gears

cherries

strawberries

ice

reading

swimming

sleeping

play

the

blowing

oranges

hippopotami

Benny

seat

in

helps

roller skates

scooter

with

rides

bathtub

bubbles

spaghetti

carrots

no

oh

backpack

I have been thinking about different ways of working. I can either work hard in my body or in my mind while I give a massage. I think it is a much better massage if I work hard in my mind. Hard isn't quite the right word, but there is an attentiveness to my own use and Alexandrian directions that can leave me feeling like I worked hard. I recently taught the first class of a myofascial release course. I started thinking more about what I do when I give a massage, especially with any myofascial work, to keep myself comfortable. It is as if I am sending currents of thought/weight through my body in different directions so while my body position may look static it is anything but. Sometimes in the midst of feeling so empowered about our program for Sarah and her progress I can momentarily feel like I will drown in the sorrows of impossibility as I see how far there is still to go. This is sort of like working very hard in my body during a massage. It is time to send my thinking elsewhere, move that current, alleviate that weight. Time to refocus on the broad support of everything that we are doing instead of thinking that all my force needs to come from my perceived need that Sarah has to be normal NOW (which is akin to all my force in a massage coming from my thumbs - it just isn't actually that powerful and it hurts). I feel the possibilities and the difference in my body with my different thoughts about Sarah as surely as I do with any AT session. Maybe I can actually use AT to help me from sliding into that muddy canyon of fear, because the slide is always accompanied by a physical slump to rival all slumps.

Perhaps it is Sarah who is homeschooling me rather than the other way around.

I wrote all of the above before Sarah's actual birthday, which is today. Birthdays are such good opportunities for growth and seeing one's stuck spots. Whenever Sarah reaches another age I still feel some sadness and hopelessness. I am trying to celebrate her as she is but I am judging some of how she does things, how she doesn't always open presents because she is having so much fun with the package itself, how loud or weird her excited sounds and movements can be, how she isn't at all near her age peers developmentally. I made a special book for her that only had one or two large words per page and then had a few pictures on separate pages. I made sure that we covered all of the words in the book on the word cards. I had a vision of her reading the book all the way through easily and delightedly, with focus, intent, and purpose. That is not what happened. She opened it and immediately tossed it aside, asking for another present (which she then didn't open for many minutes). The two times we encouraged her to read it she got a few of the words, needed help with some, and both times stopped before reading the word "spaghetti" (so she doesn't yet know that Dora rode her bike through spaghetti or what happens after that). In theory I know that this doesn't mean the reading program is a failure or that I am a failure, but those are my knee-jerk responses internally, with tears behind my eyes as I have one more reminder that ours is not the typical path. Why am I not just ok with this?? I am doing a better job than sometimes at noticing that the feelings are not truth and that what I have been given is information. Sarah isn't yet quite ready for such a book. That doesn't mean she isn't loving the word cards. It doesn't mean she isn't learning the words on the cards. It just means she isn't yet ready to transfer that knowledge to a smaller font in a book, especially when there are other exciting things to look at or do. When I observe that Amy isn't remembering all the words I don't worry about it because I know that she is smart and will learn to read at some point. Perhaps I could have that belief with regard to Sarah as well. When the word cards started working so quickly I started imagining Sarah reading chapter books within a month. Just because my envisioned time frame needs work doesn't mean she won't eventually read chapter books. We just aren't there yet. With this journey I think I am sometimes like a little kid constantly asking, "are we there yet?" And I imagine that when we are there, whatever that means, that I will just lie down and sleep for a few months. I get lots of help. Lots and lots of wonderful, beautiful, amazing help, so much so that I feel I have no right to feel tired. And yet I do. Probably some of the fatigue is emotional. We have come amazing distances in 8 years but there have been some seriously stressful hard times along the way. Just as when one wakes from a dream and blinks in surprise as reality resettles, so it is with some of the hard parts and some of the fears I have had in being Sarah's mother. I have feared for her life 3 times. I am still recognizing that she is alive and safe and well. I am still recognizing that she eats well (selectively but well). I am still noticing that she can walk and talk and play imaginatively. I am still learning that everything is ok.

Whenever I am truly sad and crying, Sarah instantly comes to my side and puts her hand on my forehead as she looks into my eyes. Could I ask for more of a sweetheart?! No, I could not. I am truly, deeply blessed beyond belief by my amazing daughters, husband, parents, in-laws, friends, acquaintances, and wide community of wonderfulness.

I am excited about Sarah's party tomorrow. Carl and I created a bicycle cake!

May any hard moments provide you with information, and may you easily shift that weight and feel supported and joyful. What a wild bicycle ride this life is.

January 25

If Benedict Cumberbatch was suddenly in the room with me, I would have some trouble continuing with my work. In the same way, when I am fastening my belt or putting on my bunny pajamas, Sarah has trouble continuing with what I have just asked her do to. Ah. I understand her distractions in a new way and it is easier to have more patience. 

When my computer shows a rainbow spinny ball, I know that I must wait. Sure, I might feel annoyed, but I know there is nothing I can do except wait. Perhaps I could visualize Sarah as showing me a rainbow spinny ball when she seems distracted and I could just wait, trusting and knowing that there is nothing else for me to do except possibly close some activity windows.

Sarah had her annual audiology appointment on Thursday and it showed possibly a bit more hearing loss than last year. Her left ear hasn't had perfect hearing for a few years but her right ear did. Since she had a bit of a cold we weren't sure if that was impacting her hearing during the tests so we will do a follow-up in March. If her right ear is back to hearing perfectly or nearly perfectly then we won't need to do anything. If the right ear does have some hearing loss then we might want to consider hearing aids at some point. Allowing the possibility that she truly might not be hearing me (rather than willfully ignoring me) helps me have more patience sometimes and changes my behavior somewhat to get closer to her rather than yelling from far away. My request to all of you lovely people is that whenever you think of it, please take a moment to send loving energy to Sarah and her ears. Think about perfect hearing and how wonderful that would be for her. Think about what you most enjoy hearing. Think about Sarah enjoying hearing the word "bicycle." Thank you!!

I bought a massage chair a week ago and I love it. This is a chair for massage therapists to use when they work with clients (for anyone who doesn't know it, I am a massage therapist). What I didn't foresee was that Sarah would enjoy and request mini sessions in the chair. It is one of the cutest things ever to see her snuggled into the chair, her face resting against what is normally the chest pad. 

The number flashcards are a testament to the fact that anything can be anything in a person's imagination. We pretend to taste the numbers and say what flavor they are, we make number cakes (sheet and layer), we frost with number frosting, we pedal number bicycles, we wrap number presents and then put them in a box that serves as a truck/plane/boat/sleigh and we deliver them, we canoe with number canoes and number paddles. Sarah loves it when I give her a choice between two numbers. She says which one she wants and then tastes it. One day I wrote out new cards with each number written as a word. We played 3 rounds of matching the words numbers to their numeral counterpart (I told her what each word was as we went). I also made new numeral cards so now we have 1-100. She watched attentively as I made them and then she started writing and coloring some of her own. She made several 23 cards. Almost every day for the past 3 days, Sarah and Amy and I all play together in the SR room with the number cards. We mainly taste, wrap, mail, and deliver them. On Friday, G. and I did a joint session that involved mailing number card "letters" into G.'s created mail slot above the door. Then I had Sarah sign for a package. At one point I asked Sarah to address a letter and write who it was to. She began, "ot." I nearly fell over with delighted surprise. She had written "to" backwards. Incidentally, I know she knows "two" when we do numbers.

One evening I played "Amazing Grace" on our music system. Sarah said, "Sixty one feet." This is totally impressive wrongness. The group is Sixteen Feet. How amazing that she remembered that from forever ago, knew from her current knowledge of numbers what that must look like and then reversed the numbers.

Sarah walked past a book cover Thursday night and said, "we are six." The cover is for Now We are Six. I didn't know if she had read it or remembered it so I asked her. She said "with Ju." I asked Ju. and she said they briefly played with the cover a few weeks ago but hadn't focused on the words much. I know Sarah knows the word "six." Maybe the line between reading and remembering is not what I thought. I don't any longer sound out my words. I just know what they are. Maybe the same is happening for Sarah. 

I recently learned about a different approach to teaching reading. I feel as excited about this as I did when we started SR and Sarah's language started to increase. The Institutes for the Achievement of Human Potential have an approach different from phonics. It involves making very large word cards and showing a small group of them briefly each day with joy and enthusiasm. The cards quickly rotate so new words are introduced every day. The method is geared towards babies but can be used with anyone. I bought the kit and I also made lots of cards myself. I am so excited about this I can hardly stand it. I am constantly thinking about new word cards I can make and intro books I can make out of the words we have done. I started this on January 23rd and yesterday Sarah read "swimming" and "Grover." Amy read "spaghetti." This was after ONE day! I want to run from room to room whooping in delight. This is so easy and fun. Amy always wants more words and Sarah wanted to play with the giant stack of cards. I am following the guidelines, though, and not giving Sarah the stack because I think the program is probably designed to introduce enough words to be interesting and not too many so as not to confuse and overwhelm. Another guideline is not to test. If there are fun opportunities for the kids to show what they know then we can offer them those opportunities or, chances are, they will just start saying words as they recognize them. That is what happened with "swimming." Oh my goodness!! Oh my goodness!!!!!!! Oh my goodness!!!!!!!!!!!!!!!!!!! For anyone interested: http://www.gentlerevolution.com/mm5/merchant.mvc?Screen=CTGY&Store_Code=&Category_Code=Reading

January 18

On Monday night we had a team meeting that was helpful in generating new ideas and reaffirming what we already know but sometimes forget. We watched some micro-tutorials from the Autism Treatment Center of America (where they teach the Son-Rise Program). This reaffirmed waiting until Sarah is really ready before we request something because then the connection will be stronger and more effective. We brainstormed lots of different ideas for growing the Around the Wheel game. This is a very simple game that Sonia and I created and it was only when Sonia pointed it out that I realized there is no end to the game or winning. Sonia also noticed how good Sarah was at all the steps. First you roll the die, then you move your wooden person, then you pick the card that corresponds to the color square you landed on, then you do what the card says. That is a lot of different things within a turn. The great thing about adding ideas for more activity cards is that those activities can be used to build on any other game or interaction in the room. 

On Tuesday, Sarah and I had an amazing session and most of it was inspired by ideas from the group meeting. Sarah wanted a blue elevator but the blanket was yellow-side up. I asked her to help me flip it and she did. She asked for the number flashcards. While she started taking them out of the box I got down the art supplies. I drew a line down a piece of paper and she cut along the line. Together we taped the paper over a small piece of cardboard. I suggested that she draw circles to be buttons for our elevator button panel. She did. Then I asked her to write numbers in the buttons. She did several and I did a few. Then I asked her to color the buttons in. She did, even following prompts to color some in more fully. I put the art supplies away and we were ready to go with our button panel. We used the number flashcards to determine our floor and to label the floor (putting the card on the windowsill). She pressed the buttons on the button panel and I made a sound (sometimes the buttons were broken and the sounds went haywire or my tongue stuck out). When she wanted to go to a floor that was higher than our buttons on the panel we did math to get there (I told her what to press, and she did it. Eg. for floor 100 she pressed the 10 ten times.) At each floor she would get off and she only got caught in the doors (my arms) a few times. I gave her a task at each floor, such as finding a picture of a bicycle or a label that said "table." Then I spread the small word flashcards around on the floor and when she got off the elevator I would tell her to look for a certain word. When she found it I would flip it over so it became a new word (there are words on each side of the cards). She did an amazing job and I only helped a little. When she was clearly done with the word searches I threw the number cards all over and we had to put them in order (1-10) to make the elevator work. Then we were both tired so just did some joining time, for maybe two minutes. For my part I started putting the larger number cards in order. Sarah quickly came over and started tracing them with her finger. She was more careful and deliberate than ever.

I think there is an increase in Sarah's original play ideas that can't be traced to anything but her imagination. She recently pretended to drink Carl's napkin and then in a play session with G. she had the number flashcards being bananas. Last night I suggested that she put the number cards on the blue plank balance beams that I set up in the family room. She and Amy had a wonderful time stepping on the cards and over them. Then Sarah again moved the play towards eating pretend number bananas or sitting in bunches of bananas. Carl and Amy sat with her in the bunches of bananas.

Sarah's sentence clarity is improving. Yesterday she commented that a person had a hole in their sock. In the past she would have said, "having a hole in my sock." This time she said the person's name instead. Awesome! 

On Wednesday, Sarah zipped her coat zipper all by herself for first time ever!!!!!! This was at school. As they were getting ready to leave, Sonia told Sarah to put on her coat and zip it. Then Sonia was busy getting herself ready and when she turned back to Sarah, Sarah was there all zipped. This is super amazing. Since then we have been requesting that she do this more often and she is trying but easily gets frustrated and has yet to repeat her success, but as with so many other things, once there is a first time then there can be a second.

There is an ATEC questionnaire regarding autism that gives a number score. The number determines the level of severity of the autism. I only put salted gentle stock in this, but it is still an interesting data point. I recently filled out the form for Sarah and her score had dropped 3 points from 15 months ago. Keep in mind that this is subjective based on my evaluation of Sarah and my interpretation of the questions and whether things are not a problem, a minor problem, or a big problem. Still, the lower the number the better. This is totally awesome that some areas that used to be more challenging and problematic are no longer problems or are less problematic. Yay. I'll take it!

For what seems like forever, Sarah has been asking every morning to go downstairs in pajamas. Normally we reserved this for Sunday mornings because I believed that we needed the pull of breakfast to help make the girls get dressed during the week. We decided this week to experiment with changing things and following Sarah's request. Astonishingly, humblingly, our mornings have become much more enjoyable and efficient with much less yelling and everyone is ready for the day earlier than ever. I stand happily corrected.

Sometimes Sarah and I have temper clashes. I am still aiming towards not having these moments at all, but since they do happen I am pleased that we continue to have a useful language for discussing it. In the past we used to talk about being on the wrong ball or being borkupines (porcupines). We still use these images but I have added saying that we were on the wrong bicycle. The great thing about this is that Sarah brightens at the very mention of bicycles. This week I said we were on the wrong tandem bicycle. After we had put our prickles away (as Amy pointed out),  we rode on the right tandem bicycle all the way to the bathroom to finish getting ready for the day. Riding the right tandem bicycle involves me holding Sarah under her armpits or around her waist and walking with her while she pedals and I say "pedal, pedal, pedal." Sometimes we have her put on her pretend helmet first. While I do not yet love our angry clashes, I do love our way of pedaling out of them and reconnecting with shared play.

Right (Wright?!) bicycles to all of you,

January 11

I think the good thing I found last Sunday was more compassion for Sarah. I certainly still had some grumpy moments this week with both children, but I feel like I was able to see past some of Sarah's yelling to the child that she is. Sometimes when I am mad at her for being mad or upset it is because I am expecting her to know better and be more of her numerical age instead of seeing her developmental age. It felt good to hold her instead of stalking off. Instead of angrily thinking she was doing her upset just to get at me, I could see that maybe her nervous system was taxed to the max and she just needed to be snuggled and listened to. I often have this softness in response to Amy's upsets and it feels good when I have it for Sarah too. 

Last week I had described the different energies of Sarah (taut) and Amy (soft). A friend who has known me for almost 20 years commented that she saw both of those energies in me and had always valued the combination but could see that I often had more trouble accepting my taut side. That was so helpful. It was truth so largely in front of my face that I couldn't see it until someone else described it. So I took the first baby step towards accepting my taut energy and I think that helped me accept Sarah more. 

While I know that I am blessed to have Sarah as she is and be on this journey, it is always with the component thought of how we will look back on this amazing journey when she is totally neurotypical and has caught up with her peers. Last night we saw The Imitation Game and I had the first moment of truly thinking maybe it could be an asset if Sarah's mind works differently from the "typical" mind. Maybe it isn't something that will change or that I need to hope to change. Yes, I still want to help her thrive as fully as possible, but maybe I can truly be ok with however things are. I may have thought similar things in the past, but this felt like understanding it on a deeper level, at least for a nanosecond.

The week had many notable moments. On Monday we had an awesome playdate. We have playdates almost every Monday but usually the kids play on their own and just happen to be in the same space. This week there was extensive shared play.

Sarah loves Carl's new jeans and belt. She was busy looking at them when Amy came over and said she wanted to play with Sarah. Sarah thought about it and then followed Amy. Wow!

In gymnastics, Sarah did a bear crawl across some bars. She has never been willing to try this before.

Sonia and I were discussing how much Sarah loves the number flashcards and that maybe we should make letter flashcards. Luckily I organized the toy storage area before making anything because I discovered an unopened box of letter flashcards from Handwriting Without Tears, the same company that made the number flashcards. I spent 30 minutes with both girls taking turns making animals with the picture side of the letter flashcards, tracing the letters with their fingers, naming the letters, and attempting to read words that I created with the cards. Following this success I asked Sonia to make small cards with simple words and some with simple math problems. G. had some successful interactions around the simple math flashcards, making his fingers match the number of items indicated (eg 2+2 would have two fingers from each hand). Talking with Ja. resulted in the idea of printing out several small bicycles and flags and other items of interest so that Sarah could have beloved physical items to count and use for math. I love all of the ideas our team thinks of collaboratively. On Thursday, Sarah and I spent an hour in the SR room using the letter flashcards, number flashcards, and practicing writing numbers in a dry-erase book. Solid academic play for 1 hour. Double wow.

Sometimes I don't know where ideas originate. I'm not sure if Sarah came up with the geography elevator all on her own or if that came from a volunteer, but it is a game she has now initiated with multiple volunteers. She uses the number flashcards to select the floor for the elevator and then the elevator takes them to a state on the map. Her time with G. involved making a blue elevator out of a blanket, taking that elevator to the tenth floor, at which point they had a snack at the rest stop. 

I had a small personal first yesterday when I was doing some Alexander Technique shadowing with a class at the massage school. When I was working with a therapist their client said "wow" just after I helped the therapist shift something in themselves. I have known this kind of moment often but never because of my work as the AT teacher. Awesome!!

I have again been feeling so incredibly blessed by my amazing life, especially my volunteers. I cannot believe how many people have been a part of our program over the years and how many of them have been with us for multiple years and how some of them come back every time they can even if their life is no longer regularly in Pittsburgh and how all of them are loving, kind, and creative. I keep wanting to say "really???" you really want to keep helping me with my life (which is really helping Sarah with hers)?? really????? Apparently they really do want to help and really do love our spunky Sarah. Sarah now almost always greets every volunteer by starting her laser beam of delighted eye contact immediately as she moves towards them, sometimes from the top of the stairs or the far end of the family room. She says hello so warmly and excitedly that it is only through an effort of memory that I recall when we had greeting people as a goal. I love how much Sarah loves her volunteers.

Laser beams of loving eye contact to all of you.

January 4

I have no answers and something good is going to happen today. 

That is my motto for the moment. 

We had wonderful Christmas celebrations, travels, and visits. We saw all three sets of the girls' grandparents plus a plethora of cousins, aunts, and uncles. The drives to and from the Philly/DE area were the best drives we have ever had with the girls. Our timing was the same as if we had been without kids. They entertained themselves for basically the entire drive each way. Amy only asked once, 5 minutes into our journey, if we were there yet. The only thing I would have changed about the whole experience was my own health. I started getting a cold before we left and a few days of getting up at 5 or 5:30am did not help. By the time we were at my dad and stepmom's house I had a cough that sounded horrendous and I had to sleep (or attempt it) sitting as fully upright as possible on a couch. Finally, I am 98% better. Nothing helps me appreciate sleep like the lack of it. Nothing helps me appreciate sleeping horizontally in my own bed with only one pillow like a week of not being able to do so. Yesterday I had a 3 hour nap (thank you, Carl!!) and it was marvelous.

It was wonderful to have a break from cooking and cleaning, aside from taking care of Sarah's food. And it is also wonderful to be back home getting back into the groove of making all sorts of foods. 

Mom-Mom had a wonderful series of moments with the girls. When one of them was busy getting ready for bed or dressed for the day, Mom-Mom would invite the other up to her room for a conversation. They loved it. They adored the one-on-one time and I'm guessing the idea of a conversation felt very grown-up. The topics ranged from bicycles to fish to hanging plants, including pretending to bring new hanging plants into the room and watering them. This was a tiny bit of SR where I hadn't planned on any.

When we were saying our goodbyes at our last stop, Amy didn't want to say goodbye. She was heartbroken about leaving. I haven't seen her that way before about a goodbye. At home in the evening she started having a meltdown about getting in pajamas and as I held her she switched to saying how she was sad about leaving Grammy and Granddad's house. 

I felt unenthused towards my children for parts of the trip, probably because of being sick. Upon our return I tried to be more in tune with Sarah's energy (I was inspired after reading some of Awesomism by Suzy Miller). What I noticed was that I very easily can feel in sync with Amy's soft snuggly energy but that I was resistant to the taut energy of Sarah's body. I was wanting her body to be more calm instead of bringing more dynamic energy to my own. I am not yet sure what this means or what to do with the information but it was still interesting. Maybe the first step is just really being ok with her energy and not needing it to change.

Moving through my morning today I could feel the usual pull to blahdom and begrudging the never ending pickup of toys and cleaning of cookware. I felt the beginnings of my usual tug of war of feeling like I should do more, more, more and also wanting to embrace relaxed flowing ease (why these seem mutually exclusive is another thing to ponder). I was thinking about what to write and worrying that I always write the same sorts of things and that maybe people will get tired of reading my words. Then I remembered that this whole update/blog began as a way for me to process and remember my own journey and as such there isn't really a wrong way to do it. I further remembered a day in 7th grade when I woke up just believing it was going to be a good day. I felt so excited to be alive. I was excited to see my crush. And that day really was a fantastic day. So... what if I could allow that it is ok for me not to have any answers? What if I could bring in that level of 7th grade crush anticipation to my daily moments? 

Happy new anticipation of wonderfulness to you,