Feb 26

This week we got 10hrs and 20min, which includes some time with her Grammy and Granddad!

Highlights of the week include my dancing around to the Killers while making dinner only to look over and see Sarah dancing while sitting in her high chair.

I realize that it is getting hard to remember when Sarah didn't talk. She now makes attempts to repeat almost every word she hears. When I told her a few mornings ago that it was time for her cyproheptadine she said "c-p-d-n." In the past when she would try to say a word it was usually with one sound. Now her attempts usually include 2-3 sounds. When I read a book that she knows well and pause before completing a sentence she often fills in the word for me. This week I started pausing two words before the end of the sentences and she often fills in the two words. She is also self-correcting some of her words to make them sound more accurate. Up until today when she would say "new" it sounded like "ee-oo." Tonight she started saying "n-ew." She is able to make herself understood more and more often, sometimes being creative in her methods. This morning she was saying "w-at m-k" and we thought she was saying "want milk" until she started saying other colors and then we understood that she was saying "white milk," which she proceeded to drink with gusto. When we sing the alphabet, if we pause at any point she often fills in the correct next sound. Her "no" has gotten extremely normal sounding! Sometimes it is still sing-songy but sometimes it is just a very clear word that you would hear from any typical kid.

On Saturday morning I got out the big puzzle again (this is a wooden puzzle with three large pieces that fit in the cut-out holes). I energetically took a piece and tried to put it in incorrectly, banging it on the wooden puzzle frame, and saying "doesn't fit!" with loud wonder. I repeated this a few times and then put it in correctly and said "yay! it fits!" Sarah grabbed a piece and did the same incorrect attempts with my narrating and her giggling delightedly. Then she got the piece in. It is clear that this is play and that she is playing at the non-fitting times. What was beautiful was that then when she went to fit the piece in it seemed like she was paying better attention to what she was doing, as if her attention towards the puzzle had loosened up because it was fun and ok if it didn't fit. She stayed with this activity for 10 min (and another 10 min later in the day). This is also wonderful since we work on increasing her attention span.

After our morning puzzle session we went to music class and as with last week there was a surprising absence of resistance about leaving her beloved door to go into class (she loves the red door leading to the building in which Music Together meets). She willingly went into class and then during class only asked to leave once and wasn't upset about staying. She sat on the teacher's lap for a few songs and was really enjoying the songs. She played with balls and scarves and a drum when it was time to do so and then waited her turn to put the item back in the bag held by the teacher. She helped blow the lights off and on (the teacher has all the kids that want to help turn the lights off and on at the end line up and hold hands and blow). She gave the teacher a hug at the end (as she did last week).

At hippotherapy her therapist was again impressed with how much she was saying.

In other exciting news Sarah regained the weight she lost when she was sick a few weeks ago. Such a thing would always be good but it is especially great since we have been able to keep her off of two meds that she used to take to help her eating.

This week I also had the radical thought that maybe I am doing enough. So often I beat myself up emotionally, telling myself I'm not doing enough and need to do more more more. This usually drags my energy down and I want to eat junk and have trouble motivating to do whatever needs to be done. Experimenting with deciding I am doing enough resulted in my having more energy and joy and thus more and better attention for Sarah and Amy and more internal room to think about what other things might help Sarah.

Feb 20

This week we got 8hrs and 50min.

We had a great moment playing with matching squares. Normally Sarah just likes to play with them bc of the texture and feel of the multiple squares and isn't too interested in matching them, to put it mildly. This week she had increased attention and flexibility and twice she picked up the correct match when presented with 3 choices. She also went along with hand over hand stacking matched pairs.

She had her 5yr check up with Dr. K. On the drive when I told her where we were going she replied "dahdah k-m." Sarah hates having her ears checked but when Dr. K. said she was going to look in Sarah's ears, Sarah grabbed the looking tool and put it to her own ear. Then later in the week when we were playing in the Sarah-Rise room she started talking about it out of the blue, saying, "dahdah k-m l-k eer/l" (her ear sound sort of ends with an "l"-ish r). We talked about this and I explained that we would be going for a hearing test too where they would look and put things in her ears. she let me put my eye up to her ear. we then talked about grammy and granddad visiting and how she wanted to play with brian but he wouldn't be visitng and then about mommom and poppop visiting. Her contributions to the conversation were "gg dad" and "pai b-n" and "mama papa." the exciting thing was how long she had attention for this and looked at me as she listened and her prompt contributions of the words she did say. this was the first time I felt like we were having a real conversation that was spontaneous and not based on someone bumping their head or blowing their nose. i think the repetitive conversations paved the way, especially as we could expand them to be about my asking what color tissue and her saying no to my question of "was the tissue green? blue? pink? etc." we played for two hours Mon and Tues and both times I had her attention with me for most of the time. amazing.

She has started reminding us after dinner to get her oil. (she gets a tsp of oil by syringe for calorie intake)

I feel like she says new words every day. When she was eating an andes mint and I said "delicious" I swear she tried to say delicious even around her mouthful of chocolate.

Normally she isn't really into cards or presents. For Valentine's Day I made a card with her interests in mind, including textures, stripes, flowers, hearts and minimal words. When I gave it to her she really looked at it and when I said "it says I love you." she responded with "ah vv"

Sometimes when she says "ah vv" I say "I love" and wait. she then says "ee oo" (you) and "t-oo" (too).

We had the best music class yet this past Sat with no resistance to going in after playing with the door and no real resistance to staying and she took her coat, shoes, etc off as requested and then put them on at the end. She again paid quiet attention for many sections of the class.

Feb 12

We had a good week despite lower hours than some other weeks. We got 6 hrs and 40 min in a week that had an eye doctor's appointment that took 2 hours (plus 2 hrs driving - eyes are fine) and and a dentist appointment (teeth are fine). Sarah did remarkably well with both appointments, letting the doctors/dentists look at her eyes and teeth. She even dealt well with the long wait time at the eye doctor's.

When Sh. did her volunteering she noticed a language explosion compared to a week ago. Then after her time with Sh. when Sh. said goodbye, Sarah looked up at her for several moments, then said "ba ba sh." To my knowledge she has never before said bye with a name after it. And I didn't prompt her with any of that. I don't have hard data points but my impression is that her eye contact is improving with duration and frequency.

There was a moment last weekend when I was slightly mad at her for saying "la la" (very angrily) instead of using the words she has I said angrily "I don't know what la la means, tell me something!" there was a pause and then she said "ah vv" which means "I love you." She also now adds "eeoo" to her "ah vv" for I love you, but what was fabulous last weekend was how she totally read the situation and played into it just perfectly. How could I stay mad in the face of an I love you?

Her language in general feels like a cartoon snowball gathering momentum as it goes downhill. More and more often when I say something she then says back to me her attempt at part of what I said. When I tucked her in for a nap and said I was going to make phone calls she said "ff k." When I said her pants were on backwards she said "back wuh." Looking at her book in the car with a picture of a bowl on a kid's head she said "ba ba" and then modified without any help or prompting, just my waiting, to "boh"

I had great consult with W., one of the Son-Rise mentors and experts from the Autism Treatment Center of America (home of Son-Rise).  He has a wonderful way of asking questions so that I can see my emotions in a situation are a choice. There is no way my written word can convey the loving light non-judgmental voice W. has but something I continue to ponder is why when Sarah does something unconventional or takes a long time to learn something or tantrums or whatever, why is my response to feel mad, discouraged, sad, etc as opposed to calm, happy, etc? This is like unraveling a knotted necklace or yarn ball. I'm still working on unraveling but I love the questions and the way he can ask them so I just crack up laughing. In the consult I get to direct what we talk about so I picked talking about how sometimes I can feel despairing or uncomfortable about Sarah. I figure this is a big thing that could hold me back from being the best parent I can be.

February 6

Carl noticed upon his return from a trip that Sarah seemed more like she was trying to tell him things and to describe what she saw more than before. She had gotten her shirt wet while washing her hands and was saying "wat eh". since she can say water well already I think this was her saying what used to pass for "wet" and then adding her correction of the vowel sound after." this tends to be her pattern with learning and correcting things.

At music class she put up much less resistance when it was time to go in and not play with the door and she only attempted to leave once. She lay on the floor looking up for a lot of the time, which is not common. I don't know if her being calmer was due to having some sarah-rise (with amy) before or because she was still in the final recovery from her cold. She also connected with me more during the class, including giving hugs and chin presses and then she put on her shoes and coat by herself when it was time to go. With many self-care tasks she is perfectly capable but the willingness isn't always there. It's nice when she is willing and motivated.

last night we had friends come over to watch the superbowl. normally sarah doesn't want to watch football but wants her programs instead. Yesterday she happily watched (including after escaping from bedtime and coming back down stairs) and kept saying "wa ff ba" (watch football).

shaking her head no and nodding yes are progressing nicely. she does each with prompting and sometimes shaking no without prompting. both are slightly awkward at this point, especially her nodding yes. it is sort of like she nods her whole body.

In general I feel like her language has progressed another chunk. She often says words now that she has never said and that we have never worked on and she does so by picking two salient sounds that she hears. (eg pigeon becomes p-n).

This past week we got 9hrs and 5 min of official time in with Sarah. At least a few hours of this I also had Amy in the room (either sarah-rise room or family room).