This past week we got 21 hours. I am pleased with how chill I was able to be about getting so many fewer hours than my goal. Some weeks/months seem to have everything coincide. Sonia being gone, other volunteers being gone, Carl working later more often, Amy being sick so not going to daycare, etc. I was pleased with how well things went overall while Sonia was away (thanks to my mom and C.) especially with starting the GAPS intro. Laundry, cooking, grocery shopping and cleaning all occurred. And it was also once again abundantly apparent that in order to do Sarah-Rise at a full-time level, I really need/want full-time help from someone who also does lots of Sarah-Rise time. The really exciting news is that Sonia is back. Hallelujah!!
For most days lately, Sarah eats basically all the time. Every hour, sometimes for an hour. This is at her request. She ends her days with a huge belly. She is 33lbs! This is the heaviest our little pip squeak has ever been. For most of her life she has been below the 3rd percentile, meaning her data is plotted below the drawn graph. At 9 month old she was diagnosed as "failure to thrive." I am stunned and thrilled that my little one, who seemingly didn't used to like to eat at all, is now shoveling it in so much that I worry about overfeeding her. Sometimes she eats 18oz of yogurt in one sitting. I am just now allowing the rest of us to eat yogurt, realizing that it is ok if we run out of a food Sarah likes to eat. There are alternatives and the rest of us need to eat too. And the yogurt is good! And probably 4 servings of yogurt a day is enough for Sarah anyway. I marvel at how many beliefs I still have regarding Sarah and eating and my old fears about her wasting away. But we really don't have to cater to her every whim. Lots of whims maybe, but not every single one. The world will not end if we run out of yogurt or avocado pudding. In fact, as was demonstrated this week when we did run out of both items, she is actually able to handle the news that we don't have something at all better than she handles the phrase "ok, I'll get it out to warm up and you can have it in half an hour" (re frozen avocado pudding), which often results in screams and tantrums.
To digress for a moment about having two parents... I am so grateful to have Carl by my side for all of this. I know many families have both parents fully on board but I know there are also some families where one parent is not supportive. While this journey is totally amazing, it is challenging. I am so so so grateful to have a supportive, loving, awesomely amazing husband who does great SR time and supports us doing GAPS and is, as always, my best friend. Since I usually use the term husband to describe Carl and since I have lots of wonderful friends and my best friends from childhood and my mom best friend and my sister-in-law best friend, it was actually a new realization to use the phrase regarding Carl and say "I get to live with my best friend." Then the part of me that is still a first grader thought "Whoa, my best friend is a boy!" Anyway, here's to best friends and to wonderful husbands! And now back to your regularly scheduled update...
While Sarah is eating all the time, she is still not a fan of meat or stock and sometimes still has a bit of a gag reflex (this is new since starting the GAPS intro). So I am resorting to hiding meat and stock in other things. I started making a yogurt-coconut milk shake that has a sploosh of stock in it. My real genius though (which continues to astound me) was in my creation of squash cookies. I took my recipe for squash pie (squash, stock, eggs) and changed it a bit and then baked it in cookie form. Both girls love the cookies. The first day I made them, Sarah ate 8. One batch of cookies includes: 1 butternut squash, 3 eggs, 1/2-1 cup chicken, pureed. That's all.
Sarah's pronouns are improving, as is the clarity of her requests/directions/demands. We've been working on pronouns for a while and Sc. has recently started working on them 3 time a week, which seems to have helped S move into her new bracket of understanding and better use. Sonia had been working a lot on some of the small connecting words. Overall she is saying more fully complete sentences. Among her phrases this week:
Read to me: Not a Stick (said while looking at me for the whole sentence)
Sit in the light (re sunlight in SR room)
Nice in the light
Play with marbles in the light
Play with marbles on the mountain (we have a new balance beam toy and she likes to have us build mountains, a description she provided from her own imagination)
Play cat in the hat on the mountain
Uncle A. come up too
It's different (referring to one of my milkshake concoctions)
It's coconutty (re: milkshake)
Her eye contact while making requests is probably at least 25% better than it was a month ago. She also now often looks right at Carl when she says "bye, Dad" (he then celebrates hugely).
Sarah's uncle A., Sonia's husband, is here for a few days and Sarah is as attached as ever before. Now she just has even more words to make her attachment known. Calling him "Uncle A." is new and she picked it up immediately after Sonia referred to him that way.
Sarah and Amy both request books all the time. Sarah is amazing at filling in the blank if I don't complete a sentence. She must have so many books and songs memorized. She is starting to do more singing when I start something.
Saturday, February 23, 2013
Saturday, February 16, 2013
February 16
This week we got 26 hours and 15 min. I love that that amount now seems low to me. As I think I mentioned, Sonia is away for most of Feb. A week ago my mom was here to help and this past week I had C., our most wonderful sitter, helping A LOT. Help is a wonderful thing. When things feel easy, I don't always remember how hard it can sometimes feel. And when things feel hard, it can be difficult to remember it is temporary. I am so blessed to have as much help as I do and I still can stress myself out with how much there is still to do and how much I'm never getting to, etc. This week I did gently remind myself that the only person carrying a whip was myself (a mental one, just to be clear). I am the one wanting to make sure there are zucchini chips made (these take over 12 hours, not much prep but I need to plan ahead adequately) and yogurt in the fridge (yogurt takes roughly 30 hours from start to edible finish) and multiple meat options and stock freshly made or defrosted, plenty of eggs for the day, squash cooked, squash pie made, juice veggies cut for the next day and fresh fruits/veggies in boxes for Carl and me for the next day, Carl's lunch ready for the next work day, and the kitchen clean enough for the next round of use. I am the one wanting the high SR totals. I am the one wanting to be caught up on email, mail, bills, taxes, scheduling various things, etc (this part isn't happening so much!). I have been struggling a bit with my oomph in the SR room and I'm thinking that has to be ok and enough right now when I'm putting so much energy and thinking into food and still dealing with headaches some (short in duration but I tend to feel drained for most of the day), and when I don't have quite as much help as usual (in addition to Sonia being gone this is one of those pockets of time when multiple volunteers are gone for multiple weeks) and because maybe it is just ok. I think I've also been judging myself for not being more creative with expanding things into games (judging myself is a real oomph-stealer). My aim is to have her favorite books expand into activities and interactions, but when she spends sometimes half of our time eating, I spend a lot of time reading with minimal interaction from her beyond speaking/looking because I don't want to interrupt the eating. (Yes, I do realize how awesome it is that she does so much speaking and that I don't want to interfere with her constant eating!)
Sarah is almost back to her pre-GAPS-intro weight. At first she wasn't wanting any meat but now she is eating it again and not spitting it out. She is also drinking stock again. Today she seemed to be eating almost all day long. She sat at the table eating for at least 90 minutes for breakfast. To give you an idea of her current eating, today she consumed...
1/4 cup carrot/chard/celery GAPS shake (blended with 1 tbsp coconut oil and 1 raw egg yolk)
1 small homemade turkey sausage (just ground turkey with salt and pepper)
2 oz chicken stock with 1/2 tsp sauerkraut juice
1 hard boiled egg with pepper
1 avocado with a little lemon juice (blended and frozen, she calls it frozen avocado ice cream)
2 1/2 scrambled eggs (with coconut oil)
18 oz plain yogurt
1 drop gutpro probiotic
a few bites butternut squash/beef/eggs/stock/coconut oil pie
20 small bites roasted chicken
1 or more zucchini-worth of zucchini chips
3 oz butternut squash/chicken/stock/eggs/coconut oil pie
5 bites pork chop
One of Sarah's favorite games of late is a marble game where you build structures through which marbles travel. Sarah can build the towers all by herself, though she likes our help to make them more complex.
Some of her favorite books these days:
Press Here (a book with dots)
Goldilocks and the Three Dinosaurs (how much do I adore Mo Willems? let me count the ways)
Old Bear
What Color Should I Be?
Not a Stick
Mommy's Special Day
Sarah recently had her 6 year well-visit at the pediatrician. They have a small door in the waiting room which she loves and she happily went in and out several times. She would get her excited jaw a little but then seemed to notice and calm the movement. She also paused often to look at me and tell me what she was doing. Then she wanted zucchini chips and sat happily munching away and looking around the waiting room. She told me "call you name," remembering from past doctor's visits when I had informed her that we were waiting for them to call her name. When they did call her name she easily went to get weighed and measured. She needed a bit of prompting to get undressed, which I then found ridiculous because she is a skinny chicken of a girl and waiting in just undies for an unknown period of time seems unnecessarily chilly (I wrapped her in my sweater). Still, through all of this she seemed attentive and mostly focused and interactive. And then the shoes came in (attached to the doctor). Black, patent leather, shiny clogs. There was no competing. So except for the last couple minutes of our time with the doctor, it was all my verbal report about how well Sarah has been progressing, but I think for the doctor there was no notable change. It is so interesting to notice the difference between how well Sarah flourishes and sparkles with presence and communication when she is at home and in the SR room compared with how ismy/excited jaw/hands/uncommunicative/unresponsive/no-eye-contacty she is when she is around other kids outside or when there is a totally amazing pair of shoes. This whole SR program is sort of like social skills weight training. If you are weak physically, you don't start with super heavy weights. You start with light ones and work your way up. The Son-Rise program is starting with light, adaptive, loving weights. She is so much stronger now, but it is clear that it is a good idea to continue with the program.
In Amy news, Amy's language is expanding all over the place. She is saying new words all the time and saying her words more clearly and fully than before. Her whole development has seemed to go at warp speed. She loves to help with anything and everything. She unloads the utensils from the dishwasher (handing them to me) and she helps hold the play tunnel closed so I can tie it up for storage. She also seems to constantly request that I "ree book" (read book). She comes running to say hello, a dandelion puff of shrieking delight, squeaking "mom" as she throws herself joyfully into my arms. She now calls Sarah "Ra-ra" and adores her more deeply than ever. She often wants Sarah to sing songs or participate in ring-around-the-rosey. Sometimes Sarah does and sometimes not.
Seeing the girls snuggled together in their double wide bed warms the cockles of my heart.
Sunday, February 10, 2013
February 10
This past week we got 31 1/2 hours. I consider this quite an achievement given that 1) Sonia is away for possibly all of February 2) my headaches are still around and I felt sort of sick from some of them this week so didn't do very much SR myself and 3) we started the GAPS intro with Sarah on Feb 4th and she had a bit of a healing crisis (more details below). Thank goodness my mom was able to be here and she had wonderful loving energy to give to all of us and did large chunks of SR time, including a 3 hour session! She is driving home today so I'm reminding myself again to be gentle with myself and my expectations this month. I can have my goals but I am endeavoring to let it be ok when I don't meet them.
Last Sunday when Sarah started wanting N. to arrive several hours before his time, I suggested that she could wear the new watch that Pop-Pop got for her. She was keen to do so and studied it as I pointed out what to look for; she wore it all day. After playing with N., we had friends come over to watch the Superbowl and some of these friends have a baby. Sarah was very interested and kept saying "oh baby!"
Yesterday Sarah gave me perhaps the first direct compliment she has ever bestowed upon me: I came in wearing new brown pants and she said "bown pa(n)ts...like dem" (brown pants, like them).
Now about GAPS... thank you all for your mid-week support. I am sure it helped Sarah and it definitely helped me to feel so supported. I was surprisingly emotional before we started, mourning on Sarah's behalf for the foods that I was going to be temporarily removing from her diet, healthy foods that are on full GAPS but not the intro. Throughout the week I have also felt more of a pull towards eating non-GAPS foods, especially chocolate, bread, and pizza. I hadn't had very strong cravings for these until this week, and I wasn't even the one being so deprived of full GAPS stuff!
Some of you asked for more information about what GAPS is and why we are doing it. It stands for Gut And Psychology Syndrome. It is a protocol for healing a leaky gut, which is common among people on the autism spectrum. When there are small tears in the gut lining then foods that normally are healthy and helpful can become toxic to the body. The intro involves a day of just chicken soup (where the bones for the broth cook for at least 12 hours) and then you gradually add in other easily digestible foods. On day 1 Sarah ate chicken soup all day without a problem. I thought we were going to sail through this whole process. Ha! While many people could have chicken soup all day and not experience a healing crisis, for someone whose gut is compromised in some way a healing crisis (this looks like being sick) is probably coming. This started day 2 and continued through day 3. She lost 2 1/2 pounds since we started the intro. On Thursday she was technically allowed a teaspoon of yogurt but no more, according to the book. The practitioner guiding us through all of this said she could have more yogurt and she proceeded to eat 12 oz throughout the day, perking up into more of her normal self even before all the extra yogurt. She is now eating zucchini chips and frozen whipped avocado and mashed cauliflower and scrambled eggs and "pie" (butternut squash, eggs, stock, coconut oil). She is barely touching her stock and usually spits out her meat. In the past she often ate meat easily and drank stock easily so I think she probably still has an association with feeling sick after eating the chicken soup. The tricky thing is that to heal her gut wall the most needed items are animal fats, meats, and stock. She is not yet pooping so I am worried that things aren't working because we can't get enough animal products in her, but I am also reminding myself she might just need more time and that I don't have to freak out immediately. (I am really good at freaking out immediately). This whole process has pointed out how I still have more emotional layers of taking on a responsibility that isn't fully mine. Sure, I can have the responsibility to provide the recommended foods because I am choosing to try to heal her body in this GAPS way, but I can't force her to eat and it isn't really my responsibility for her to eat. It is hers. More layers of recognizing her independence and giving her space. Dang is that hard sometimes! The deep fear is that she will die and that it will be my fault. I know this is a little extreme, but recognizing that it is there can help me let go of the fear. I think I also have some disappointment that she isn't now snarfing several pounds of meat a day, as some other children have done (after 3-4 days of not eating).
Among the many beautiful moments of the week... when Sarah's volunteers came during her low-energy days, she wanted them to be the ones to carry her between the SR room and her room. So even when she wasn't feeling good she still wanted to be with her friends. And when Mom-Mom told Sarah that she loved her all to pieces, Sarah responded with her best attempt at saying the same thing back.
I hope you all are feeling loved and supported. Thanks for being my village.
Last Sunday when Sarah started wanting N. to arrive several hours before his time, I suggested that she could wear the new watch that Pop-Pop got for her. She was keen to do so and studied it as I pointed out what to look for; she wore it all day. After playing with N., we had friends come over to watch the Superbowl and some of these friends have a baby. Sarah was very interested and kept saying "oh baby!"
Yesterday Sarah gave me perhaps the first direct compliment she has ever bestowed upon me: I came in wearing new brown pants and she said "bown pa(n)ts...like dem" (brown pants, like them).
Now about GAPS... thank you all for your mid-week support. I am sure it helped Sarah and it definitely helped me to feel so supported. I was surprisingly emotional before we started, mourning on Sarah's behalf for the foods that I was going to be temporarily removing from her diet, healthy foods that are on full GAPS but not the intro. Throughout the week I have also felt more of a pull towards eating non-GAPS foods, especially chocolate, bread, and pizza. I hadn't had very strong cravings for these until this week, and I wasn't even the one being so deprived of full GAPS stuff!
Some of you asked for more information about what GAPS is and why we are doing it. It stands for Gut And Psychology Syndrome. It is a protocol for healing a leaky gut, which is common among people on the autism spectrum. When there are small tears in the gut lining then foods that normally are healthy and helpful can become toxic to the body. The intro involves a day of just chicken soup (where the bones for the broth cook for at least 12 hours) and then you gradually add in other easily digestible foods. On day 1 Sarah ate chicken soup all day without a problem. I thought we were going to sail through this whole process. Ha! While many people could have chicken soup all day and not experience a healing crisis, for someone whose gut is compromised in some way a healing crisis (this looks like being sick) is probably coming. This started day 2 and continued through day 3. She lost 2 1/2 pounds since we started the intro. On Thursday she was technically allowed a teaspoon of yogurt but no more, according to the book. The practitioner guiding us through all of this said she could have more yogurt and she proceeded to eat 12 oz throughout the day, perking up into more of her normal self even before all the extra yogurt. She is now eating zucchini chips and frozen whipped avocado and mashed cauliflower and scrambled eggs and "pie" (butternut squash, eggs, stock, coconut oil). She is barely touching her stock and usually spits out her meat. In the past she often ate meat easily and drank stock easily so I think she probably still has an association with feeling sick after eating the chicken soup. The tricky thing is that to heal her gut wall the most needed items are animal fats, meats, and stock. She is not yet pooping so I am worried that things aren't working because we can't get enough animal products in her, but I am also reminding myself she might just need more time and that I don't have to freak out immediately. (I am really good at freaking out immediately). This whole process has pointed out how I still have more emotional layers of taking on a responsibility that isn't fully mine. Sure, I can have the responsibility to provide the recommended foods because I am choosing to try to heal her body in this GAPS way, but I can't force her to eat and it isn't really my responsibility for her to eat. It is hers. More layers of recognizing her independence and giving her space. Dang is that hard sometimes! The deep fear is that she will die and that it will be my fault. I know this is a little extreme, but recognizing that it is there can help me let go of the fear. I think I also have some disappointment that she isn't now snarfing several pounds of meat a day, as some other children have done (after 3-4 days of not eating).
Among the many beautiful moments of the week... when Sarah's volunteers came during her low-energy days, she wanted them to be the ones to carry her between the SR room and her room. So even when she wasn't feeling good she still wanted to be with her friends. And when Mom-Mom told Sarah that she loved her all to pieces, Sarah responded with her best attempt at saying the same thing back.
I hope you all are feeling loved and supported. Thanks for being my village.
Sunday, February 3, 2013
February 3
This week we got 38 hours. A testament to how our program has increased in hours is that now having an outreach and getting feedback for several SR team members meant that we got fewer hours than we otherwise would have. In the past that wasn't the case; we always got more hours during an outreach. I'm so pleased with the number of hours we are getting. As always, the Outreach with M. (a Son-Rise specialist) was awesome and incredibly helpful towards helping take our program to the next level of effectiveness.
M. was last here in October and she noticed big changes in Sarah since then: an increase in both how much Sarah says and how clear it is; an increase in Sarah's directing play and requesting things; an increase in her imaginitive play, and an increase in connection for greetings and farewells. Once again, I love noticing that I start taking little things for granted and forgetting where we were before. I also love how with each Son-Rise training and with each Outreach I peel away more layers of my limiting beliefs. On the one hand I am believing Sarah can go all the way (typical, Swarthmore-bound, genius), and on the other hand I still do things for her like turn off the water while she is brushing her teeth. Hmm. To teach her independence requires letting her be independent. We get to the big future picture by addressing the present picture in front of us.
While I used to be amazed daily by Sarah's language (and I still am), I am now giving daily chuckling prayers of gratitude over how well she is eating. I can't believe that my kids are eating so healthily and that this morning Sarah threw a mini tantrum because I didn't have any stock defrosted! I can't believe that I am now cooking one family dinner and that at least half the time the girls will eat some of it. Starting tomorrow morning, things will get both simpler and possibly harder. We start the GAPS intro for Sarah tomorrow. This means chicken soup for every meal and just water to drink. She can have as much as she wants but that is the only option. Then the next day we add one tiny change and see how she responds. It is possible she will move through the stages quickly and easily and it is possible we will hang out in some stages longer. I'm working with a consultant with whom I will email daily and she will help guide me in what to give Sarah. While I'm not making all of us do the intro, I am making us eat what Sarah eats (and only that) at shared meals. It is too hard to have things on the table that she wants and can't have. Luckily, Amy loves chicken soup too. And isn't it wonderful that the things Sarah will probably ask for and miss are frozen avocado pudding, prunes, dried peas, scrambled eggs, and pumpkin seeds? Luckily avocados are one of the first foods to come back in (though I don't yet know if pureed and frozen is ok)
Yesterday for our group SR meeting we had our sitter watching the girls. On Friday Carl was explaining to Sarah that the babysitter would be coming. Sarah responded "Sarah sitter." I love that she can understand some things so much as to make jokes or new phrases.
Our group meeting yesterday was wonderful for multiple reasons. It is super awesome to have M. helping us think through our program. It is super awesome that Sarah is ready for us to challenge her more and help her more with friendship skills and boundaries. It is super awesome that I have such creative and loving people as our team members. Sometimes the enormity of the love pouring towards us can almost knock me over internally and sometimes it is hard to fully accept the love and help without feeling guilty about it or guilty about possibly wanting to ask for more help with varying things. Really, if anyone needs any proof of the beauty of humanity and of people, they need look no farther than our Sarah-Rise program or any Son-Rise program for that matter. It is such a beautiful thing to meet for two hours discussing one amazing little girl and how much we love her and want to help her succeed. And she is flourishing so powerfully. The further beauty is that we are all growing and changing too.
For Sarah's second birthday celebration (on the actual day she turns 6 is 1/31), we sang her the alternate birthday song that is a tradition in my family. She was very attentive, looking right at both of us and really listening. (Lyrics: Happy birthday, happy birthday, just for you. Happy birthday and may all your dreams come true. When you blow out the candle, one light stays aglow. That's the love light in your eyes where'er you go). Then she got to open presents. This was the most attentive and aware of the whole process she has ever been. She opened all of her presents and since it was close to bedtime we kept a slightly speedy pace. Even as she was interested in something she had just opened, when I said there was another present, she turned to the new present. She didn't try to rewrap things! Amy had a bit of a hard time with being jealous, which was a new experience for all of us to deal with. I expect we will have more such new experiences when it is Amy's birthday. I hope so. That would be so typical!
For the birthday celebration with some of her volunteers, Sarah was the one to start singing "happy birthday."
For one of Sarah's presents, Carl's mom made Sarah a pair of white pants with black seams. As some of you may know, this has been a fixation of Sarah's for a long time. She has said the phrase maybe a thousand times (or at least it felt that way). So I mentioned this to N. and a few days later a package arrived with said pants. I had been uncertain if whatever it was that Sarah visualized could be realized. It was! She is thrilled with her pants. Yay for N. making a dream come true!
I hope you are all wearing your dream pants.
M. was last here in October and she noticed big changes in Sarah since then: an increase in both how much Sarah says and how clear it is; an increase in Sarah's directing play and requesting things; an increase in her imaginitive play, and an increase in connection for greetings and farewells. Once again, I love noticing that I start taking little things for granted and forgetting where we were before. I also love how with each Son-Rise training and with each Outreach I peel away more layers of my limiting beliefs. On the one hand I am believing Sarah can go all the way (typical, Swarthmore-bound, genius), and on the other hand I still do things for her like turn off the water while she is brushing her teeth. Hmm. To teach her independence requires letting her be independent. We get to the big future picture by addressing the present picture in front of us.
While I used to be amazed daily by Sarah's language (and I still am), I am now giving daily chuckling prayers of gratitude over how well she is eating. I can't believe that my kids are eating so healthily and that this morning Sarah threw a mini tantrum because I didn't have any stock defrosted! I can't believe that I am now cooking one family dinner and that at least half the time the girls will eat some of it. Starting tomorrow morning, things will get both simpler and possibly harder. We start the GAPS intro for Sarah tomorrow. This means chicken soup for every meal and just water to drink. She can have as much as she wants but that is the only option. Then the next day we add one tiny change and see how she responds. It is possible she will move through the stages quickly and easily and it is possible we will hang out in some stages longer. I'm working with a consultant with whom I will email daily and she will help guide me in what to give Sarah. While I'm not making all of us do the intro, I am making us eat what Sarah eats (and only that) at shared meals. It is too hard to have things on the table that she wants and can't have. Luckily, Amy loves chicken soup too. And isn't it wonderful that the things Sarah will probably ask for and miss are frozen avocado pudding, prunes, dried peas, scrambled eggs, and pumpkin seeds? Luckily avocados are one of the first foods to come back in (though I don't yet know if pureed and frozen is ok)
Yesterday for our group SR meeting we had our sitter watching the girls. On Friday Carl was explaining to Sarah that the babysitter would be coming. Sarah responded "Sarah sitter." I love that she can understand some things so much as to make jokes or new phrases.
Our group meeting yesterday was wonderful for multiple reasons. It is super awesome to have M. helping us think through our program. It is super awesome that Sarah is ready for us to challenge her more and help her more with friendship skills and boundaries. It is super awesome that I have such creative and loving people as our team members. Sometimes the enormity of the love pouring towards us can almost knock me over internally and sometimes it is hard to fully accept the love and help without feeling guilty about it or guilty about possibly wanting to ask for more help with varying things. Really, if anyone needs any proof of the beauty of humanity and of people, they need look no farther than our Sarah-Rise program or any Son-Rise program for that matter. It is such a beautiful thing to meet for two hours discussing one amazing little girl and how much we love her and want to help her succeed. And she is flourishing so powerfully. The further beauty is that we are all growing and changing too.
For Sarah's second birthday celebration (on the actual day she turns 6 is 1/31), we sang her the alternate birthday song that is a tradition in my family. She was very attentive, looking right at both of us and really listening. (Lyrics: Happy birthday, happy birthday, just for you. Happy birthday and may all your dreams come true. When you blow out the candle, one light stays aglow. That's the love light in your eyes where'er you go). Then she got to open presents. This was the most attentive and aware of the whole process she has ever been. She opened all of her presents and since it was close to bedtime we kept a slightly speedy pace. Even as she was interested in something she had just opened, when I said there was another present, she turned to the new present. She didn't try to rewrap things! Amy had a bit of a hard time with being jealous, which was a new experience for all of us to deal with. I expect we will have more such new experiences when it is Amy's birthday. I hope so. That would be so typical!
For the birthday celebration with some of her volunteers, Sarah was the one to start singing "happy birthday."
For one of Sarah's presents, Carl's mom made Sarah a pair of white pants with black seams. As some of you may know, this has been a fixation of Sarah's for a long time. She has said the phrase maybe a thousand times (or at least it felt that way). So I mentioned this to N. and a few days later a package arrived with said pants. I had been uncertain if whatever it was that Sarah visualized could be realized. It was! She is thrilled with her pants. Yay for N. making a dream come true!
I hope you are all wearing your dream pants.
Sunday, January 27, 2013
January 27
40 hours!!!!
The girls now share a double wide bed (words they both love to say). I think this is helping Amy sleep a bit more soundly than when she is just on her own. One night they were both up for a bit in the middle of the night and for a change I wasn't in with them. We heard Sarah say "la.la la. la. la." This was her normal protest lala but parsed differently. Hysterical.
While we are mostly full GAPS we still give Sarah chocolate milk (coconut milk with honey and cocoa powder) sometimes. At one meal she preferred stock to chocolate milk! I think because I had omitted the honey. I created an avocado "ice cream" of sorts by pureeing avocados and mixing in some lemon juice and honey and freezing it. Then I warm it a bit to serve. Sarah loves it! And it is really mostly avocado.
Today we had a small birthday celebration for her with some kid friends (most of her friends these days are her volunteers). She was excited about the chicken soup and the banana bread cake. She spent more time at the table eating than anyone else. She blew out all 6 candles (several blows) without needing any instruction or encouragement. She was super excited to see her friends. I'm glad we kept it small and it felt perfect.
After her bath in the evening she goes back to her room and gets dressed in her pajamas completely independently and then gets under the covers.
While at the table one day she wanted something and was saying I should look at my watch. She looked at her wrist where a watch would be.
We have been focusing some on helping her make eye contact when she requests things. She is great at eye contact during conversations but rarely when requesting things, especially in the SR room. Yesterday she got up from the table twice to walk up to Carl and look at him while asking to play in the snow.
The girls now share a double wide bed (words they both love to say). I think this is helping Amy sleep a bit more soundly than when she is just on her own. One night they were both up for a bit in the middle of the night and for a change I wasn't in with them. We heard Sarah say "la.la la. la. la." This was her normal protest lala but parsed differently. Hysterical.
While we are mostly full GAPS we still give Sarah chocolate milk (coconut milk with honey and cocoa powder) sometimes. At one meal she preferred stock to chocolate milk! I think because I had omitted the honey. I created an avocado "ice cream" of sorts by pureeing avocados and mixing in some lemon juice and honey and freezing it. Then I warm it a bit to serve. Sarah loves it! And it is really mostly avocado.
Today we had a small birthday celebration for her with some kid friends (most of her friends these days are her volunteers). She was excited about the chicken soup and the banana bread cake. She spent more time at the table eating than anyone else. She blew out all 6 candles (several blows) without needing any instruction or encouragement. She was super excited to see her friends. I'm glad we kept it small and it felt perfect.
After her bath in the evening she goes back to her room and gets dressed in her pajamas completely independently and then gets under the covers.
While at the table one day she wanted something and was saying I should look at my watch. She looked at her wrist where a watch would be.
We have been focusing some on helping her make eye contact when she requests things. She is great at eye contact during conversations but rarely when requesting things, especially in the SR room. Yesterday she got up from the table twice to walk up to Carl and look at him while asking to play in the snow.
Sunday, January 20, 2013
January 20
This week we got 36 hrs and 45 min. It really seems to be true that something always changes or comes up so that my ideal planned week doesn't quite occur as I thought it would. What is wonderful about the current plan and schedule is that we can still get amazing SR hours even with little blips.
I took Sarah to get her pre-GAPS-intro blood-work and she was AMAZING. I told her ahead of time about what would happen and went through the scenario several times. I didn't have any books or toys, so luckily the wait was short. She loved the chairs in the waiting room and the big chair for the actual blood draw. While the nurse was getting things ready I explained to Sarah again about how it would make it go faster if she could stay still when they had the needle in her. The nurse said that it is often better not to tell kids ahead of time about what was going to happen. I explained that she had special needs and that I had found it to be really helpful to tell her repeatedly exactly what would be happening. When the nurse returned with the second nurse (because Sarah was so young) she was explaining that she wouldn't have known Sarah had special needs if I hadn't said anything. Sarah then stayed still in my lap, watched the whole process, and cried but didn't fight it. The nurses were very impressed. Then when we got home Sarah said "fun budwok." I said "the bloodwork was fun?" "aya." (Sarah often now answers with "yes" or "yeah" but sometimes our beloved "aya" still makes an appearance.)
I have been bringing new books into the SR room a little more frequently and Sarah has been attending to all of them. Sometimes it isn't quite clear if it is an ism about the pages turning or if she likes the actual story. When I'm unsure I just pause and wait for her to request that I go on, which she almost always does. She picks up new words very quickly so after a couple times of reading a book to her she is ready to fill in words when we pause. One of her current favorites is called "I am small" and is about a baby penguin in the big, tall, steep, deep world, feeling safe because of being with the parent penguin. Sarah also likes "Don't Let the Pigeon Finish This Activity Book."
Last week I forgot to mention that we have removed the small tv/dvd player from the family room. There is also no ipad play. So instead of getting to watch a bit of something every day, now the girls watch something at most once a week (on the big tv, usually football with Carl). Sarah still asks to watch things but there is no great upset when the answer is no. As with removing food items that I thought were crucial; it seems to work remarkably well to just remove things and then Sarah adjusts and I don't get tempted to offer them. Sarah now asks for me to read to her much more often.
Sarah's eating still astounds me. The variety she is willing to eat and the health food she now consumes is so different from a few months ago. I really believe one of the most important changes was my letting go of my fears and limiting beliefs and thus offering new foods and persisting in having her try them (it really helped to have Sonia for this change). It also doesn't hurt that at this point she is a very accomplished chewer. She loves the homemade yogurt. She eats almonds, sunflower seeds, hard boiled eggs, prunes, currants, GAPS banana bread (my own converted Better Homes and Gardens recipe; super delicious), GAPS macaroons, stock, chicken soup, cauliflower "fried rice" with pork, dried peas, lima bean hummus, dried zucchini, pears, cucumbers, juice containing parsley and spinach, tomato/spinach omelet, coconut milk. Some of these things she ate before and some are new. What she no longer eats: 1/2 n 1/2, ice cream, granola bars, store-bought fruit leather, straight chocolate, store-bought cookies, hot dogs, cereal, goldfish, fries, donuts. When Sarah was super little and the food situation was super hard I used to dream of a time when we would look back and laugh and tell her about the crazy things we used to do to get her to eat. Yesterday I had a small bit of that moment when Carl and I were walking and reminiscing about when we would do stroller walks with Sarah, plying her with bites of food and counting calories (tracking each goldfish, eat bite of cheese or butter or hot dog). There was last year when I would drive around every day after her preschool so she would eat since it seemed that she ate better in the car; I wasn't tracking calories but I was excited when she ate 2 granola bars. I used to feel that we were such a bad influence when other kids would visit or see what Sarah got to eat; for the first time I am proud of what my kids are eating and amazed to see them chowing down on truly healthy things. If nothing else, GAPS has given us this wonderful experience.
Sarah loves her time in the SR room. She is always asking to go there when we aren't there and when her volunteers arrive she jumps up and runs to the door or she calls out their name. I'm not 100% sure that part of her SR room love isn't just because of her love of the jean shorts that we wear for her while in there; but even if that is the initial draw, that is ok.
I'd like to give a special thanks to my Amy team. I have volunteers who watch Amy and they are a hugely important part of this team - just as important as any of us in the SR room. It takes this village to make the whole process work as well as it is, and Amy is getting such lovely loving attention. And I feel so loved and supported by my Amy watchers. So thank you!!
I feel totally blessed by Sarah bringing into my life all of these amazing people and experiences. If it weren't for her condition and running Sarah-Rise, I wouldn't be having this amazing time with Sonia. We've always liked each other but it is super wonderful to spend most of each week together and really get to know each other so much more.
I took Sarah to get her pre-GAPS-intro blood-work and she was AMAZING. I told her ahead of time about what would happen and went through the scenario several times. I didn't have any books or toys, so luckily the wait was short. She loved the chairs in the waiting room and the big chair for the actual blood draw. While the nurse was getting things ready I explained to Sarah again about how it would make it go faster if she could stay still when they had the needle in her. The nurse said that it is often better not to tell kids ahead of time about what was going to happen. I explained that she had special needs and that I had found it to be really helpful to tell her repeatedly exactly what would be happening. When the nurse returned with the second nurse (because Sarah was so young) she was explaining that she wouldn't have known Sarah had special needs if I hadn't said anything. Sarah then stayed still in my lap, watched the whole process, and cried but didn't fight it. The nurses were very impressed. Then when we got home Sarah said "fun budwok." I said "the bloodwork was fun?" "aya." (Sarah often now answers with "yes" or "yeah" but sometimes our beloved "aya" still makes an appearance.)
I have been bringing new books into the SR room a little more frequently and Sarah has been attending to all of them. Sometimes it isn't quite clear if it is an ism about the pages turning or if she likes the actual story. When I'm unsure I just pause and wait for her to request that I go on, which she almost always does. She picks up new words very quickly so after a couple times of reading a book to her she is ready to fill in words when we pause. One of her current favorites is called "I am small" and is about a baby penguin in the big, tall, steep, deep world, feeling safe because of being with the parent penguin. Sarah also likes "Don't Let the Pigeon Finish This Activity Book."
Last week I forgot to mention that we have removed the small tv/dvd player from the family room. There is also no ipad play. So instead of getting to watch a bit of something every day, now the girls watch something at most once a week (on the big tv, usually football with Carl). Sarah still asks to watch things but there is no great upset when the answer is no. As with removing food items that I thought were crucial; it seems to work remarkably well to just remove things and then Sarah adjusts and I don't get tempted to offer them. Sarah now asks for me to read to her much more often.
Sarah's eating still astounds me. The variety she is willing to eat and the health food she now consumes is so different from a few months ago. I really believe one of the most important changes was my letting go of my fears and limiting beliefs and thus offering new foods and persisting in having her try them (it really helped to have Sonia for this change). It also doesn't hurt that at this point she is a very accomplished chewer. She loves the homemade yogurt. She eats almonds, sunflower seeds, hard boiled eggs, prunes, currants, GAPS banana bread (my own converted Better Homes and Gardens recipe; super delicious), GAPS macaroons, stock, chicken soup, cauliflower "fried rice" with pork, dried peas, lima bean hummus, dried zucchini, pears, cucumbers, juice containing parsley and spinach, tomato/spinach omelet, coconut milk. Some of these things she ate before and some are new. What she no longer eats: 1/2 n 1/2, ice cream, granola bars, store-bought fruit leather, straight chocolate, store-bought cookies, hot dogs, cereal, goldfish, fries, donuts. When Sarah was super little and the food situation was super hard I used to dream of a time when we would look back and laugh and tell her about the crazy things we used to do to get her to eat. Yesterday I had a small bit of that moment when Carl and I were walking and reminiscing about when we would do stroller walks with Sarah, plying her with bites of food and counting calories (tracking each goldfish, eat bite of cheese or butter or hot dog). There was last year when I would drive around every day after her preschool so she would eat since it seemed that she ate better in the car; I wasn't tracking calories but I was excited when she ate 2 granola bars. I used to feel that we were such a bad influence when other kids would visit or see what Sarah got to eat; for the first time I am proud of what my kids are eating and amazed to see them chowing down on truly healthy things. If nothing else, GAPS has given us this wonderful experience.
Sarah loves her time in the SR room. She is always asking to go there when we aren't there and when her volunteers arrive she jumps up and runs to the door or she calls out their name. I'm not 100% sure that part of her SR room love isn't just because of her love of the jean shorts that we wear for her while in there; but even if that is the initial draw, that is ok.
I'd like to give a special thanks to my Amy team. I have volunteers who watch Amy and they are a hugely important part of this team - just as important as any of us in the SR room. It takes this village to make the whole process work as well as it is, and Amy is getting such lovely loving attention. And I feel so loved and supported by my Amy watchers. So thank you!!
I feel totally blessed by Sarah bringing into my life all of these amazing people and experiences. If it weren't for her condition and running Sarah-Rise, I wouldn't be having this amazing time with Sonia. We've always liked each other but it is super wonderful to spend most of each week together and really get to know each other so much more.
Sunday, January 13, 2013
January 13
This week we got 33 hours!!
Sarah had a Reiki session a week ago when I was at work and this was K.'s report:
"Sarah was demanding to interact with me - gooo Sarah-rise! She wanted to put together a puzzle, was insistent in asking for help when i would pause interacting with her, was making jokes to make me laugh, asked multiple times for play dough and, when i refused gently, she decided it was snack time. I was blown away by forty minutes of undivided play and interaction with no frogging and limited stimming. you are obviously supporting her in a way that is working!" -k.
J. noticed a big increase in the amount and clarity of Sarah's language, and an increase in imaginative play compared to when she saw Sarah in October.
Sarah's ability to repeat things she hears sometimes cracks me up, even when I am the one to suggest that she say a certain thing. Twice this week when she has started to whine/yell I have suggested an alternate communication such as "hey, mom..." or "no, mom..." Both times she has said the first two words, at which point the sentence stops because I am laughing and whooping and cheering for her, surprised and delighted by her response. It is the sort of thing I have been suggesting for a long time and it is only now that she has the ability to begin to do it.
Yesterday while Carl was fixing our rowing machine, Sarah was playing on part of it and saying "row row" so I sang "row, row, row your boat" and then paused. Sarah then sang "genty down ri-ver." As Carl pointed out, that is perhaps more exciting than if she had said "stream" because it shows that she understands the concept, beyond just memorizing words.
Yesterday when Sarah was eating an egg she told us she was an "egg eat-er."
Today Sarah sang the strongest ABCs I've ever heard her sing.
She assembled a train track more independently and easily than I have recently witnessed. We've been practicing with a big jigsaw puzzle in the SR room and she is quite attentive even though she still struggles with orienting the pieces sometimes.
GAPS had seemed so intimidating (and parts of it still can seem so), but now that I've been doing some of the full GAPS things for the family, it is not seeming so hard or strange anymore. Not strange to get up and make fresh juice. Not strange to cook eggs and veggies every morning. Not so bad to always have so many dishes to do or cooking to do. Not so strange to go to the grocery store and buy 3 dozen eggs, tons of fruit and veggies, and lots of meat and very little else. I am personally feeling healthier and less tired, even when I haven't gotten much sleep. I have noticed that when I eat really processed food (eg peppermint patties or goldfish) then within about 15 minutes I feel sluggish and tired and also want more. Hmm. That is super exciting to notice and slightly disappointing too. I think in the past I had such things so often, in theory thinking it was helping me make it through the day, that I didn't clear my body enough to notice how I reacted. So the very thing I thought was helping me was hindering me. We are still having some grains, sugar, and milk, but less and less every day. I'm also still using the microwave a bit. But I have now made my own yogurt (very mild). We have carrots fermenting in the cabinet. We have dehydrated apples and zucchini. Sarah is eating seemingly all the time. She is eating a wider variety of foods and her weight is steady. Both girls love raw sprouted pumpkin seeds. They love chicken soup. Sarah asks for stock. She asks for homemade juice. It is so helpful to have Sonia here to facilitate this whole process. The multitasking I can accomplish as two people is incredible. I'm in awe of the parents I know who are doing Son-Rise and GAPS (or other related food journeys) and don't have full-time help. I am also once again aware of the deep blessings that Sarah has facilitated. Without her condition I wouldn't be totally changing the way we eat. Yes, I view this as temporary in how restricted it will be, but I hope that I can maintain a lot of the healthy aspects of making most things myself and of eating more fruits, veggies, nuts, seeds, meat, and eggs. We are also having dinner as a family now almost every night which is deeply fantastic. We often have breakfast together too, which is also new. We love it. So, yes, this is a lot of work, but so far it is very worth it. I'm feeling like a power mama.
Sarah had a Reiki session a week ago when I was at work and this was K.'s report:
"Sarah was demanding to interact with me - gooo Sarah-rise! She wanted to put together a puzzle, was insistent in asking for help when i would pause interacting with her, was making jokes to make me laugh, asked multiple times for play dough and, when i refused gently, she decided it was snack time. I was blown away by forty minutes of undivided play and interaction with no frogging and limited stimming. you are obviously supporting her in a way that is working!" -k.
J. noticed a big increase in the amount and clarity of Sarah's language, and an increase in imaginative play compared to when she saw Sarah in October.
Sarah's ability to repeat things she hears sometimes cracks me up, even when I am the one to suggest that she say a certain thing. Twice this week when she has started to whine/yell I have suggested an alternate communication such as "hey, mom..." or "no, mom..." Both times she has said the first two words, at which point the sentence stops because I am laughing and whooping and cheering for her, surprised and delighted by her response. It is the sort of thing I have been suggesting for a long time and it is only now that she has the ability to begin to do it.
Yesterday while Carl was fixing our rowing machine, Sarah was playing on part of it and saying "row row" so I sang "row, row, row your boat" and then paused. Sarah then sang "genty down ri-ver." As Carl pointed out, that is perhaps more exciting than if she had said "stream" because it shows that she understands the concept, beyond just memorizing words.
Yesterday when Sarah was eating an egg she told us she was an "egg eat-er."
Today Sarah sang the strongest ABCs I've ever heard her sing.
She assembled a train track more independently and easily than I have recently witnessed. We've been practicing with a big jigsaw puzzle in the SR room and she is quite attentive even though she still struggles with orienting the pieces sometimes.
GAPS had seemed so intimidating (and parts of it still can seem so), but now that I've been doing some of the full GAPS things for the family, it is not seeming so hard or strange anymore. Not strange to get up and make fresh juice. Not strange to cook eggs and veggies every morning. Not so bad to always have so many dishes to do or cooking to do. Not so strange to go to the grocery store and buy 3 dozen eggs, tons of fruit and veggies, and lots of meat and very little else. I am personally feeling healthier and less tired, even when I haven't gotten much sleep. I have noticed that when I eat really processed food (eg peppermint patties or goldfish) then within about 15 minutes I feel sluggish and tired and also want more. Hmm. That is super exciting to notice and slightly disappointing too. I think in the past I had such things so often, in theory thinking it was helping me make it through the day, that I didn't clear my body enough to notice how I reacted. So the very thing I thought was helping me was hindering me. We are still having some grains, sugar, and milk, but less and less every day. I'm also still using the microwave a bit. But I have now made my own yogurt (very mild). We have carrots fermenting in the cabinet. We have dehydrated apples and zucchini. Sarah is eating seemingly all the time. She is eating a wider variety of foods and her weight is steady. Both girls love raw sprouted pumpkin seeds. They love chicken soup. Sarah asks for stock. She asks for homemade juice. It is so helpful to have Sonia here to facilitate this whole process. The multitasking I can accomplish as two people is incredible. I'm in awe of the parents I know who are doing Son-Rise and GAPS (or other related food journeys) and don't have full-time help. I am also once again aware of the deep blessings that Sarah has facilitated. Without her condition I wouldn't be totally changing the way we eat. Yes, I view this as temporary in how restricted it will be, but I hope that I can maintain a lot of the healthy aspects of making most things myself and of eating more fruits, veggies, nuts, seeds, meat, and eggs. We are also having dinner as a family now almost every night which is deeply fantastic. We often have breakfast together too, which is also new. We love it. So, yes, this is a lot of work, but so far it is very worth it. I'm feeling like a power mama.
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