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.

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.

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.

Sunday, January 6, 2013

January 6

This week we got 12 hours and 20 min.

Cluster headaches.... not a significant problem, but not off my radar. Thank goodness for medication. I really am amazed at how many years I just suffered through all the pain. I have only had a couple this week and only one that I would designate as really bad. I still plan on continuing all the pursuits that might help avoid the headaches in the future but if I get the whispery pre-headache indications again then I will probably opt for medication again. I have already had some helpful insights. My stepfather wrote a lovely note to me about wanting the headaches to go away because I had already learned whatever they were here to teach me. Coupled with my mom's reminder to be kind to myself, I started asking myself if I had in fact learned what the headaches were trying to tell me. The answer was no. I noticed that a lot of my tension and pressing my tongue to the roof of my mouth (without knowing it) relates to when I have a decision to make and am second guessing myself in all directions and worrying that any decision won't be right or thinking that worrying about it somehow makes me a better person and more apt to choose the right thing. Hmm. After 35 years of this, perhaps I can say that this is not in fact working out the way I intended. I am not actually a better person for the worry and I don't think it actually leads to better decisions. Maybe instead of worrying that either decision will be wrong I could believe that either decision will be right or ok. I could affirm that I make good decisions. I am also aware that there are many more layers to how hard I am on myself about so many things sometimes. One pattern I notice is that I start judging myself precisely when I am taking action towards changing/improving some aspect of my life. For example, I am changing our SR schedule now so that we will be a more powerful team and get even more hours in the room. This is pretty awesome! And my doubting internal attack voices start saying that I need to be a better leader, do better group meetings, set better goals, be more inspiring etc. Ugh. So I am working on noticing that making this change actually counts as being a better leader and that maybe I'm doing this all well enough. My desire to have everything go perfectly (whatever that means) can easily turn into holding myself responsible for Sarah's outcome. For example, feeling like I need to run the perfect SR program (the best ever, as strong as Samahria's) and implement GAPS perfectly and be the perfectly happy, nurturing, patient, teaching/guiding, clear parent all the time or else my kids will be ruined and everyone would be better off without me. I realize this is extreme and I am not always this hard on myself but when I start changing things towards more internal space and hope then sometimes my internal gremlins get really tough. I share this so that I can remember these times when I look back on the program later. There are times when everything seems to flow so easily and times when it doesn't. I want to remember it all and to be able to share all the humanness of this journey with other parents on similar journeys. Because sometimes this is hard! And I keep thinking that it shouldn't be, but maybe the answer is that it is ok for it to feel hard.

To balance the hard parts... my kids are incredibly edibly deliciously adorable. When Amy comes up behind me to give me a hug or when Sarah tells me "Ah l-vv- ee-oo" (I love you), it just doesn't get better than that. When Amy wakes me up with a kiss or Sarah thinks something is outrageously funny, that is priceless. And a lot of the time I am inspired and nice to myself and others. And Carl always helps me laugh and think things through more clearly. And Sonia helps everything run more smoothly. And I know I can always call my mom. And my family and friends and volunteers are awesomely supportive and wonderful.

Lately Sarah thinks the phrase "down the wrong ball" is hysterically funny. Following a moment yesterday where I yelled at Sarah, I felt very inspired and good about my explanation to her. I snuggled her on my lap and said that when I get mad it is because I am confused and don't know what to do. It means I am on the wrong ball and she can tell me "mom, you're on the wrong ball!" She giggled a lot about this and it felt like an honest, clear explanation.

We are not quite ready to start the GAPS intro with Sarah but I am continuing to move the whole family towards full GAPS. The intro is very restricted in terms of scope and then you work up through the stages to be at full GAPS where you can eat lots of stuff, just not grains, refined sugar, or lactose. No processed food. I am allowing us to eat what we have in the house so we are still having cereal and some other grains and sugar but I'm not re-buying. I am more aware than ever of my own sugar addiction. I am spending a lot more time cooking and cleaning the kitchen. A lot! It is exciting and overwhelming. As with some other tasks, I think I want it to take no time. I am excited that we are all already eating more healthily and that I am discovering new delicious recipes and I am learning a lot about digestion and nutrition that I never knew. Grocery shopping is quite different. I have never bought so much meat or so many eggs at one time except when shopping for group vacations. I am developing a taste for sour kraut. In the past I didn't like it and now I almost crave it. (Long ago this happened with cilantro - I used to hate it and now it is one of my favorite flavors). If nothing else, I think our family will develop healthier eating habits. Sarah already eats things I never thought she would. Since I stopped buying fruit leather she now loves prunes. She drinks stock. She eats lima bean hummus. I eat lima bean hummus. I love it! I normally don't like lima beans. I think the early days with Sarah and eating were so hard that I was living in a very scared tight space about her eating and weight gain. It is exciting to start to shift that and see that it is possible and Sarah will in fact still eat.

Despite my rough moments I really think this year will be incredibly powerful and amazing.