This week I decided it was vacation for SR as well so if we got time then we got time and if we didn't that was ok too. Between Carl and myself we got 8 1/2 hrs. Overall this felt like a good decision to keep the time feeling relaxed but I also realized I wanted three things simultaneously for our staycation time and that it's not possible to do all of them fully. In hindsight I can wish that we got lots more SR time. Or I can wish that we relaxed and had more family play time. Or I can wish that we were more productive with house projects. We had some of each and I'm endeavoring to be ok with that. We really had lots of lovely times.
One exciting thing was that Sarah was the reason SR time happened at all because she requested it strongly every day.
Sarah had more awareness about Christmas and presents than ever before. Overall a lovely and chaotic time. The girls were especially good at beginning to open things (all of them) and at ripping off tags prematurely.
A couple of months ago I had the warning flickers of cluster headaches so I took medicine to avoid the cluster and it worked. Normally I only have to deal with a cluster once a year. Apparently this year is not cooperating. I think when I felt the warning flickers in the past week or so I probably dismissed them because it couldn't be a cluster - I already passed that. Not so. I have now had two and this morning's was pretty horrendous. So I'm on a medication that is supposed to kick the cluster back enough for the regular medicine to help me skip the cluster again. I felt very resistant with the first headaches of this cluster because...it's not fair...it's not allowed...I should be able to Option my way or Alexander my way out of it...I don't want to do medication a second time in the year!...I must have messed up with my eating and getting too stressed...maybe when we start GAPS it will fix it...maybe craniosacral work can fix it...etc. The thing is, I am a basket case when I have a headache. So I think it makes sense to again do medication and then also try the other things to help too. For those of you unfamiliar with cluster headaches, they are not called cluster because of the location on your head. They are called cluster headaches because people tend to get them daily (often in the middle of the night) for 4-6 weeks. They feel like a knife is sticking through your eye to the back of your head. They are nicknamed suicide headaches because of their severity. In contrast to migraines, people with cluster headaches usually can't stay still during a headache and would rather bash their head against something (I don't, but I imagine it). Some headaches only last 15 min and others last 3 hours. The bad ones go away but I tend to feel not quite my best for the rest of the day. I always have the dream that I will solve these once and for all but I also know that since I have skipped a few clusters with the help of medication, our lives are much much better during the cluster season (which moves around). When I have them it takes up a lot of time from Carl, my mom, and me all trying to get me feeling better. I am a mess during a headache. So I really hope that somehow things can work out so I don't have to do 4-6 weeks of horrible headaches. If I do have to go through it, I will survive. I always do. I've been dealing with them since 1995. Carl has been fabulous each and every time. He has really stuck with me through a lot, being loving and supportive through it all. My mom has also been incredible, listening to me sob and helping calm me down and look at the things about which I was overly stressed. Both have been up with me in the wee hours. I really hope this time we don't go on that path.
Sunday, December 30, 2012
Sunday, December 23, 2012
December 23
This week we got 22 hrs and 45 min. It was a pretty amazing week overall with many beautiful moments in several sessions.
We have started having her drink veggie/chicken or veggie/pork stock to help pave the way for GAPS when she will initially only be offered stock and soup made with pureed veggies. This has been going well when we offer a cookie if she finishes it. I know this is slightly more ABA than Son-Rise but we've been doing such things regarding food for a while and it works and it gives me hope that Sarah won't totally starve when we start GAPS. I've been drinking the stock too and it is actually quite tasty. I've been having many conversations with Sarah about how exciting it will be in January to change the way we eat to be healthier to help our bodies feel really good and heal if they need to heal. I talk about the fun new recipes we will discover and how we will "drink Chicken STOCK in a mug." She loves the word stock and laughs as she tries to say it. I am also visualizing that the GAPS intro will go smoothly and that Sarah will eat (rather than going on a hunger strike).
We have been out of ice cream and it has been ok. Not much asking, not much screaming. Sarah has instead rekindled her love of eating margarine or butter straight and she has been eating more yogurt.
One of my favorite Sarah-Rise sessions started with Sarah's newest favorite game: the Tea Party. When she requested it I asked if we were going to have the party in the sand or snow. She said snow so then I pretended that everything was cold. She liked the idea of cold cake and repeated it several times. When she turned her attention to the holes in my jean shorts (that I was wearing over my pants) I started saying we could fix the holes with parts of the tea party. I sang "there's a hole in my jean shorts, dear Sarah, dear Sarah" to the tune of "there's a hole in the bucket, dear Liza." and then had a new verse about each item of the tea party fixing the hole. She then mentioned going to a party at dad's work, which we did a few weeks ago. I said that she had eaten cookies and a roll at the party. She then said that she was all done with her roll. I repeated it with great emphasis which she seemed to enjoy. Then she put herself across my lap and said "no roll." I pretended to taste her to confirm that she was not a roll. I then continued pretend eating her while guessing which item of food she might be. Somehow we deduced that she was a juice box that, when squeezed, would spill juice all over, necessitating mopping up with the tea party table cloth. She reinitiated the squeeze game several times by saying "skeeze," all while sitting on my lap. This was such a fun, surprising play time. I love it when we end up with a game that I never imagined and that we get there through joint contributions. After this super connected time she asked for play dough and I had a lovely time joining with semi-exclusive play, opening and closing the containers. Then she spent maybe 30 being very exclusive. I was comfortable with the exclusivity but realized that I wasn't giving myself the super great connected feeling that I had with the tea party/juice box game or the warm connected feeling that I had with the play dough. The gentle question is why not? I think I was still somehow in a waiting mode or feeling like it wasn't as productive, even while knowing it is helpful to be there because it offers the opportunity for connection. Carl commented later that it was the absolute best thing I could do at that moment given that the other activities were no longer options. That is such a helpful perspective for me.
Other fun play moments: Carl made a contraption out of the play tool kit and the ribbons that he and Sarah determined was a leg swing (for her leg). G. played with the blanket tent, falling out of it and then saying a big hello when he would come back in. Sarah picked up on this and added some of her own greetings and invitations for him to come back in the tent. S. played with balloons and created Bob the Balloon who ate prunes under the blanket tent. Sc. found a Mr. Potato Head tent that has velcro for the face pieces and has two doors - what a perfect toy that capitalizes on so many of Sarah's loves. Sonia had a whispered conversation with Sarah where they talked about whispering.
It is super wonderful having Sonia back and I'm really glad that she went to the Start-Up. It has helped bring renewed clarity and oomph to our program and our lifestyle implementation of Son-Rise.
We have Sonia's husband visiting for Christmas and Sarah is thrilled. When he comes in the door she isn't upset about not getting to go out of the door! We are thrilled to have him here too and are trying to make Pittsburgh seem like the best place in the world.
I hope you all have a wonderful end of December, whatever holiday you celebrate. I am deeply grateful for all of you in my life. I know it's not quite the New Year, but I have been reflecting on this past year. This was the year that Sarah really learned to talk. This was the first year of Sarah-Rise with volunteers. What a year!
We have started having her drink veggie/chicken or veggie/pork stock to help pave the way for GAPS when she will initially only be offered stock and soup made with pureed veggies. This has been going well when we offer a cookie if she finishes it. I know this is slightly more ABA than Son-Rise but we've been doing such things regarding food for a while and it works and it gives me hope that Sarah won't totally starve when we start GAPS. I've been drinking the stock too and it is actually quite tasty. I've been having many conversations with Sarah about how exciting it will be in January to change the way we eat to be healthier to help our bodies feel really good and heal if they need to heal. I talk about the fun new recipes we will discover and how we will "drink Chicken STOCK in a mug." She loves the word stock and laughs as she tries to say it. I am also visualizing that the GAPS intro will go smoothly and that Sarah will eat (rather than going on a hunger strike).
We have been out of ice cream and it has been ok. Not much asking, not much screaming. Sarah has instead rekindled her love of eating margarine or butter straight and she has been eating more yogurt.
One of my favorite Sarah-Rise sessions started with Sarah's newest favorite game: the Tea Party. When she requested it I asked if we were going to have the party in the sand or snow. She said snow so then I pretended that everything was cold. She liked the idea of cold cake and repeated it several times. When she turned her attention to the holes in my jean shorts (that I was wearing over my pants) I started saying we could fix the holes with parts of the tea party. I sang "there's a hole in my jean shorts, dear Sarah, dear Sarah" to the tune of "there's a hole in the bucket, dear Liza." and then had a new verse about each item of the tea party fixing the hole. She then mentioned going to a party at dad's work, which we did a few weeks ago. I said that she had eaten cookies and a roll at the party. She then said that she was all done with her roll. I repeated it with great emphasis which she seemed to enjoy. Then she put herself across my lap and said "no roll." I pretended to taste her to confirm that she was not a roll. I then continued pretend eating her while guessing which item of food she might be. Somehow we deduced that she was a juice box that, when squeezed, would spill juice all over, necessitating mopping up with the tea party table cloth. She reinitiated the squeeze game several times by saying "skeeze," all while sitting on my lap. This was such a fun, surprising play time. I love it when we end up with a game that I never imagined and that we get there through joint contributions. After this super connected time she asked for play dough and I had a lovely time joining with semi-exclusive play, opening and closing the containers. Then she spent maybe 30 being very exclusive. I was comfortable with the exclusivity but realized that I wasn't giving myself the super great connected feeling that I had with the tea party/juice box game or the warm connected feeling that I had with the play dough. The gentle question is why not? I think I was still somehow in a waiting mode or feeling like it wasn't as productive, even while knowing it is helpful to be there because it offers the opportunity for connection. Carl commented later that it was the absolute best thing I could do at that moment given that the other activities were no longer options. That is such a helpful perspective for me.
Other fun play moments: Carl made a contraption out of the play tool kit and the ribbons that he and Sarah determined was a leg swing (for her leg). G. played with the blanket tent, falling out of it and then saying a big hello when he would come back in. Sarah picked up on this and added some of her own greetings and invitations for him to come back in the tent. S. played with balloons and created Bob the Balloon who ate prunes under the blanket tent. Sc. found a Mr. Potato Head tent that has velcro for the face pieces and has two doors - what a perfect toy that capitalizes on so many of Sarah's loves. Sonia had a whispered conversation with Sarah where they talked about whispering.
It is super wonderful having Sonia back and I'm really glad that she went to the Start-Up. It has helped bring renewed clarity and oomph to our program and our lifestyle implementation of Son-Rise.
We have Sonia's husband visiting for Christmas and Sarah is thrilled. When he comes in the door she isn't upset about not getting to go out of the door! We are thrilled to have him here too and are trying to make Pittsburgh seem like the best place in the world.
I hope you all have a wonderful end of December, whatever holiday you celebrate. I am deeply grateful for all of you in my life. I know it's not quite the New Year, but I have been reflecting on this past year. This was the year that Sarah really learned to talk. This was the first year of Sarah-Rise with volunteers. What a year!
Sunday, December 16, 2012
December 16
This week we were just shy of 20 hours. Sonia was in MA for the Son-Rise Start-Up course, so the week was another reminder of my life before Sonia. Many things flowed very well, especially with the added help of C., my wonderful babysitter. Some days felt very hard. The laundry and dishes piled up, the toys stayed scattered, the cloth diapers have lingered for days waiting to be washed, and I didn't get as much SR time, but we did have a great week overall. And I'm really glad Sonia is back!!
Sarah's puzzle skills seem to be improving. The times of my coaching her to turn a piece are becoming less frequent. Yesterday we played with a fish puzzle where all the pieces are the same shape and you can create uni-colored fish or multi-colored fish depending on how you insert the pieces. Without my prompting or suggesting a thing, Sarah put the pieces in so that the fish were just one color each. To me this means she is really understanding the concept of matching, at least with colors.
Speaking of puzzles, Amy is phenomenal at puzzles. Given our experience with Sarah and how she has struggled with puzzles, it is like watching a magician when I observe Amy pick up pieces to an ocean animal puzzle and put them all in their places with no help or guidance at all. She turns them right-side up, rotates them, and fits them into the correct hole all by herself!! Maybe this is something all neuro-typical kids can do, I don't know. Even if it is, let's celebrate how astoundingly amazing it is for anyone and everyone to do it.
Yesterday Carl and Sarah cut out paper snowflakes! She still needs help with scissors, especially opening them, but she is pretty good at squeezing them closed.
Sarah's language, as always, continues to gallop apace with her increasing vocabulary and clarity.There is still a lot that people other than her immediate family doesn't understand, but it keeps getting better. Last night when Carl was playing with her in the SR room she said, "All done in here, dinnertime now." I think when I have all of the volunteers focus on noticing and helping her with the clarity of just a couple specific words that it ripples out to expand the clarity of her language overall. This is so different from the past when we felt like she had to memorize each sound for each word and wasn't making connections between similar sounds or words. She also retains so much in her memory, which never ceases to amaze me. Yesterday we were talking on the couch and she started talking about "Ms. L.... D....sc-ool." This was totally out of the blue (they were her teachers last year) and their names were said more fully and clearly than ever before. When she was having a snack she told me that her "f-t sacks yummy in a tummy" (fruit snacks are yummy in the tummy). This is a reference to the Little Mouse and the Big Cupcake book, which is surely a favorite but I haven't read it or said that phrase in at least a month or two.
Speaking of that favorite book... we have entered a (hopefully tiny) phase of book ripping. The Little Mouse and the Big Cupcake book has been shredded. She also ripped a book of piano music and an autographed Mo Willems book. After each occurrence I take measures to remove temptation and set boundaries but it is such a new thing and has never ever been a problem before so I think I'm having trouble thinking preventatively because I don't immediately see danger when I leave Sarah in a room with a paper book for 2 minutes. I am not replacing the books because I want her to understand that ripping isn't something you can just fix or undo. She doesn't seem upset but it is a subject she likes to discuss.
On Tuesday I had another phone consultation with M. (a Son-Rise specialist) which was super helpful. The main focus was about Sarah's tantrums and crying sessions. I am realizing that when we let her do things some of the time but not all of the time, that probably sets the stage for tantrums. While it is clear to us about when things are ok and when not, it probably isn't to Sarah. I have been thinking I was being kind by sometimes allowing her to play in the car or with the door, but maybe that wasn't kind in the big picture because then she wants them every time. This week I kept reaffirming my intention to be clear and consistent, without allowing her screams to make me doubt myself. I think that is the biggest thing. When I am not sure of myself then I allow the crying and screaming to make me doubt my decision and feel like a bad, powerless parent. Deciding that I do make good decisions, or decisions with the best of intentions, and that it is ok to stick with them calmly and happily despite upset, has helped a lot. And it is something that I have to keep affirming because it is very easy for me to forget. (Today I started to forget and while I stayed firm in my decisions outwardly I was less inwardly sure and got rather grumpy so it is good to write this and remind myself of how I want to be).
With this whole program sometimes I can feel so energized and hopeful and that we are progressing so beautifully. And then sometimes I can start creating internal pressure to make Sarah neurotypical and developmentally normal, and that, if this is even possible, it also needs to happen quickly. I can feel like things are so consistently challenging and hard that I want to be done and just clock out of being a parent. This is not coming from a loving place, of myself or the girls. I want to focus on what we can do happily and enthusiastically without pulling down into desperation. Nothing sucks the power out of a SR session faster than desperation or judging myself (as a parent or team leader) or feeling like it is my responsibility to "fix" her. So I want to affirm my purpose in running this program. My purpose with Sarah-Rise is to help Sarah flourish to be the best Sarah she can be. I will do this through loving and accepting her for exactly who she is now and through inspiring growth using Son-Rise techniques. My purpose is to have a loving environment in the home for all who enter. My purpose with changing the way we eat is to help us all be healthy so we can function to the best of our ability. My purpose with training volunteers is to help Sarah have a varied experience and have more creativity and effective one-on-one time than I can provide on my own. My purpose in being a parent is to help both of my children flourish as their truest selves (and to help them learn to be independent members of society). As Bears says, to love is to be happy with. And, it's got to start with me. If I'm judging me then I'm not loving Sarah or anyone else. Some lessons seem to present themselves quite often. :)
Sarah's puzzle skills seem to be improving. The times of my coaching her to turn a piece are becoming less frequent. Yesterday we played with a fish puzzle where all the pieces are the same shape and you can create uni-colored fish or multi-colored fish depending on how you insert the pieces. Without my prompting or suggesting a thing, Sarah put the pieces in so that the fish were just one color each. To me this means she is really understanding the concept of matching, at least with colors.
Speaking of puzzles, Amy is phenomenal at puzzles. Given our experience with Sarah and how she has struggled with puzzles, it is like watching a magician when I observe Amy pick up pieces to an ocean animal puzzle and put them all in their places with no help or guidance at all. She turns them right-side up, rotates them, and fits them into the correct hole all by herself!! Maybe this is something all neuro-typical kids can do, I don't know. Even if it is, let's celebrate how astoundingly amazing it is for anyone and everyone to do it.
Yesterday Carl and Sarah cut out paper snowflakes! She still needs help with scissors, especially opening them, but she is pretty good at squeezing them closed.
Sarah's language, as always, continues to gallop apace with her increasing vocabulary and clarity.There is still a lot that people other than her immediate family doesn't understand, but it keeps getting better. Last night when Carl was playing with her in the SR room she said, "All done in here, dinnertime now." I think when I have all of the volunteers focus on noticing and helping her with the clarity of just a couple specific words that it ripples out to expand the clarity of her language overall. This is so different from the past when we felt like she had to memorize each sound for each word and wasn't making connections between similar sounds or words. She also retains so much in her memory, which never ceases to amaze me. Yesterday we were talking on the couch and she started talking about "Ms. L.... D....sc-ool." This was totally out of the blue (they were her teachers last year) and their names were said more fully and clearly than ever before. When she was having a snack she told me that her "f-t sacks yummy in a tummy" (fruit snacks are yummy in the tummy). This is a reference to the Little Mouse and the Big Cupcake book, which is surely a favorite but I haven't read it or said that phrase in at least a month or two.
Speaking of that favorite book... we have entered a (hopefully tiny) phase of book ripping. The Little Mouse and the Big Cupcake book has been shredded. She also ripped a book of piano music and an autographed Mo Willems book. After each occurrence I take measures to remove temptation and set boundaries but it is such a new thing and has never ever been a problem before so I think I'm having trouble thinking preventatively because I don't immediately see danger when I leave Sarah in a room with a paper book for 2 minutes. I am not replacing the books because I want her to understand that ripping isn't something you can just fix or undo. She doesn't seem upset but it is a subject she likes to discuss.
On Tuesday I had another phone consultation with M. (a Son-Rise specialist) which was super helpful. The main focus was about Sarah's tantrums and crying sessions. I am realizing that when we let her do things some of the time but not all of the time, that probably sets the stage for tantrums. While it is clear to us about when things are ok and when not, it probably isn't to Sarah. I have been thinking I was being kind by sometimes allowing her to play in the car or with the door, but maybe that wasn't kind in the big picture because then she wants them every time. This week I kept reaffirming my intention to be clear and consistent, without allowing her screams to make me doubt myself. I think that is the biggest thing. When I am not sure of myself then I allow the crying and screaming to make me doubt my decision and feel like a bad, powerless parent. Deciding that I do make good decisions, or decisions with the best of intentions, and that it is ok to stick with them calmly and happily despite upset, has helped a lot. And it is something that I have to keep affirming because it is very easy for me to forget. (Today I started to forget and while I stayed firm in my decisions outwardly I was less inwardly sure and got rather grumpy so it is good to write this and remind myself of how I want to be).
With this whole program sometimes I can feel so energized and hopeful and that we are progressing so beautifully. And then sometimes I can start creating internal pressure to make Sarah neurotypical and developmentally normal, and that, if this is even possible, it also needs to happen quickly. I can feel like things are so consistently challenging and hard that I want to be done and just clock out of being a parent. This is not coming from a loving place, of myself or the girls. I want to focus on what we can do happily and enthusiastically without pulling down into desperation. Nothing sucks the power out of a SR session faster than desperation or judging myself (as a parent or team leader) or feeling like it is my responsibility to "fix" her. So I want to affirm my purpose in running this program. My purpose with Sarah-Rise is to help Sarah flourish to be the best Sarah she can be. I will do this through loving and accepting her for exactly who she is now and through inspiring growth using Son-Rise techniques. My purpose is to have a loving environment in the home for all who enter. My purpose with changing the way we eat is to help us all be healthy so we can function to the best of our ability. My purpose with training volunteers is to help Sarah have a varied experience and have more creativity and effective one-on-one time than I can provide on my own. My purpose in being a parent is to help both of my children flourish as their truest selves (and to help them learn to be independent members of society). As Bears says, to love is to be happy with. And, it's got to start with me. If I'm judging me then I'm not loving Sarah or anyone else. Some lessons seem to present themselves quite often. :)
Saturday, December 8, 2012
December 8
This week we got 30 hours! Woohoo! Goal met!!!
On Tuesday Sonia and I attended a CPR/AED/First -Aid class. Some aspects of such classes can sometimes seem dull, rote, and repetitive. Not so much when I implemented my Sarah-Rise skills. I decided I could really enjoy the repetitive CPR practice and just being where I was in general. The part where we all repeat "are you ok? are you ok? so-and-so, call 911" was bland. When we got to the AED practice I decided to be more myself and how I thought I would actually be in such a situation, allowing more pretend adrenaline and "oh my goodness, please work, please work!" into my turn. The instructor thought it was fun and I had more fun too. And frankly, I'll probably remember it better. So my intention is to remember this in two years when I take such a class again (for my massage license) and to have it in the beginning with the CPR practice.
Tuesday had more opportunities for growth and learning as well. After the class I was on my own with the girls for about 5 hours. I know that I used to have this scenario all the time, but either I have lost my skills or I quickly forget how hard it used to be. We went to the coop. This was not my best idea or my best parenting moment. Sarah tried running off down the beloved off-limits employee-only hall. She didn't want to be shopping. She wanted to be done. I wanted to be done. I was gruff and grumpy and rough and unhappy. I give thanks to the woman who kindly commented on Sarah loving the doors and how she was adorable. Note to all those who may observe parents being mean in grocery stores: those parents are probably feeling tight and miserable inside and giving some genuine praise/kindness to them or their children might help them shift the tightness at least a tiny bit. I used to be so judgmental of such mean parents, glaring at them as if they should know better. Oh, how times have changed. I have learned so very much through Son-Rise and yet I still certainly have the places where I am not loving or encouraging (of Sarah or myself). At least now those moments are much shorter in length. And this whole experience helped really bring into focus what a huge change it is having Sonia around. While we might not always reach my SR time goals, the overall quality of my life and that of the girls is so much calmer. I think having Sonia around helps us implement an SR lifestyle much much more often.
Sarah is getting much more capable and independent in ways that are exciting and newly challenging. This week I had to set the child lock on her car door because when she is buckled in she can still unlock and open her door. I don't know if she would do so while we were in motion, but I don't want to find out. I also discovered she could reach the mantel in the family room, which I thought was safe. My best guess is that she stood on the boat rocker toy to reach the dvds that were on the mantel. So now the family room has been rearranged so there is no longer anything she could stand on near the mantel.
We are almost out of ice cream in the house and I'm not buying more. This is the first phasing-out to get ready for GAPS (the lactose-free, grain-free, refined-sugar-free diet we will be implementing in January). I expect there could be a lot of screaming on Sarah's part and I feel for her because if I were to not have chocolate around I would have a hard time too. I intend to eventually go off chocolate myself out of solidarity and as I do GAPS, but I think having only one super grumpy party at a time makes sense for right now. I think I noticed more of a correlation between S eating ice cream and then wanting to nap or having more excited hand and jaw movements. I'm not sure about the correlation so it will be interesting to see how things are when there is no ice cream.
On Wednesday I did a 3 hour SR session. I've never done such a long one before and I think it went surprisingly well. I was worried that I would lose my oomph but I didn't. It was actually an amazing session. I think we had about an hour or 90 min of almost continuous interaction with extremely minimal isming. We started with a book that involves her pressing dots and my making beeping noises. She loves this. The book also has other instructions such as to shake it or tap 5 times on a dot. She did both, including counting to 5 (with some prompts to keep going). Then we had 3 games in a row where I felt like I was surprised by her level of participation, imagination, and attention. We were drawing on the white board (starting with dots to beep) and somehow I drew an umbrella (not sure whose idea it was). She then instructed that it was striped so I added stripes. I drew clouds. She said "daw wain" (draw rain). We both drew rain. I drew a stick figure with a smiley face. She spontaneously, excitedly looked at it and waved and said "hi." I asked her who it was and she said "mom." I asked her to add hair and she did. We then practiced drawing smiled faces in general (right now she is sort of like a young Picasso in terms of where body parts go and her noses are gigantic, which may be how they seem to her in real life and why she likes them so much). Then she asked for sunglasses so I brought them out along with the dress-up bin. As she played with the sunglasses I started putting on necklaces and scarves, saying we were dressing up to go to a party. I helped her into my jean shorts with suspenders, a scarf, and an old pair of my heels. As we got up to walk to the party I inwardly thought "crap! what now? I didn't expect this to work!" As I invited her to dance at the party she said "no dancin(g)." I started singing. She said there was no singing. I got out a small dry-erase board and started writing down her party exemptions: no dancing, no singing, no drinking (except water), no eating (except "some cake"), no tickling, no kissing, no hugging, and no tapping. I'm guessing I then suggested there could be tea at the party and I brought out the Tea Party game (with cardboard pictures). In the past she would ism a lot with the table cloth. This time she only ismed for maybe a minute, twice. We took turns with the spinner and she was attentive to the pieces I gave her. She watched me pretend to drink tea. When she got a tea cup, she pretended to drink tea. Then, after observing me, she pretended to add milk and sugar. This was all so amazing!! The second 90 min had more frogging and isming, which I think makes sense given how much she had stretched herself in the first half of our time. An hour after my session, S. came for her 2 hour session and said Sarah was more talkative than ever before. So Wednesday was quite the day.
On Thursday I told Sarah we were going to see J. (her nutritionist). She said something I didn't understand ending in "tooti." I finally figured out that she was trying to say "Children's Institute," which is where J. works. We haven't been there in 4 months and I probably haven't said anything about it in as long. As we drove, we went past my office and Sarah said her best version of "see Kathy go office" because when Kathy has seen Sarah for Anat Baniel Method lessons they have been at my office. The last time that happened was in July! Sarah has such a memory and is so observant as we drive. Tonight on our way home from the holiday party at Carl's work, we passed Target and Sarah said "go Tar-get today." (The party was as expected with Sarah mainly wanting to jump in the big inflatable castle jumping thingie and she did lots of excited jaw movements. Only eating 1 1/2 cookies and nothing else. Wanting to play on stairs. I felt more at ease because I am finally fully owning our situation and accepting Sarah and not trying to pretend or hoping people won't notice that she is different. Yup, she is different and awesome and I am happy with our Sarah-Rise program that I want to share with anyone who wants to know about it).
This morning as Carl prompted Sarah to go down the hall to her room to get dressed she replied, "do not run off down co-op hall." Perfectly clearly. Seven words!
Sunday, December 2, 2012
December 2
This week we got 25 hours. I had been so sure that once Sonia was here we would easily get 30 hours or more. The thing is, there are always days that volunteers can't come or that Sonia or I don't get our full time in. The reasons are always good reasons. And I still have feelings of disappointment in myself for not making it to 30 hours. If I was coaching a volunteer about this I would remind them to celebrate what did happen and that wanting more time is great. It's the needing more hours before I let myself feel good about the accomplishment that is resulting in my frustration. Or maybe I'm using the frustration to motivate myself to get in more time. And yet, if there is ever a time of year to be flexible and allow for other things too it is now. Not only will some of my volunteers be away for the holidays but I also need to finish some classes for my massage license renewal. Never mind Christmas prep! And we are organizing ourselves to start the GAPS diet in January, at least for Sarah and maybe for all of us. That takes research and planning and making new foods. Plus, the week of Dec 9 Sonia will be going to Option to take the Son-Rise start-up class. This will help boost our program even more, though the week itself will have fewer official SR hours. And Sarah is continuing to progress so maybe I could truly let go and be gentle with myself about not meeting my goal.
What am I afraid would happen if I was totally happy with the amount of hours? People might think I was getting complacent. I might not try harder in January. Do I believe either statement? Not really. Yet it feels sort of like letting go of a security blanket (or banklet as Sarah would say) to let myself be freely happy and judgment free. I think there is another level of judgment. Given that I was getting some of these tallies before having full time help, what is wrong with me that I'm not getting more now? How many other parents get
more hours but don't have full-time help? The part that I'm maybe not crediting is that I am more relaxed and the kids get better care and attention throughout the day than they did before Sonia arrived. I get more time one-on-one with Amy. I am more effective at observing and giving feedback to my team and at preparing for team meetings. I am getting to some home projects that I haven't been doing before and that are important, like covering some exposed lead paint.
Our goal for the past few weeks was to model and encourage saying hi/bye. I feel like Sarah responds more to prompts for these and is doing them maybe a bit more often spontaneously. It is still a goal for the next few weeks as well.
I have been asking Sarah for two weeks if I could trim her hair or take her to get a haircut. The answer was always clearly no. This week I got my hair cut and the next day Sarah asked for a haircut and was quite cooperative with the drive (45 min each way for the person I like the most) and the ten minute trim.
This felt like a more rambling update than some. Thanks for listening. It help to have witnesses as I figure things out.
more hours but don't have full-time help? The part that I'm maybe not crediting is that I am more relaxed and the kids get better care and attention throughout the day than they did before Sonia arrived. I get more time one-on-one with Amy. I am more effective at observing and giving feedback to my team and at preparing for team meetings. I am getting to some home projects that I haven't been doing before and that are important, like covering some exposed lead paint.
Our goal for the past few weeks was to model and encourage saying hi/bye. I feel like Sarah responds more to prompts for these and is doing them maybe a bit more often spontaneously. It is still a goal for the next few weeks as well.
I have been asking Sarah for two weeks if I could trim her hair or take her to get a haircut. The answer was always clearly no. This week I got my hair cut and the next day Sarah asked for a haircut and was quite cooperative with the drive (45 min each way for the person I like the most) and the ten minute trim.
This felt like a more rambling update than some. Thanks for listening. It help to have witnesses as I figure things out.
Sunday, November 25, 2012
November 25
This week we got 16 hours, which is impressive given the Thanksgiving travel. 14 hours of that was in three days and then I did an hour on Thurs and Fri while we were away.
Sarah has always been an awesome traveler and this trip was no exception. She even did a great job staying with us while walking through the airport without us holding her hand the whole time.
Sarah is often quite present during meal times at home and she continued this in our large family gatherings of 10 people. When we sat down to our turkey dinner, a small voice said "gobble." As we laughed she looked around, clearly pleased with herself. She also clapped and said "yay" after we sang happy birthday to J. on Wed. In general she was quite verbal and made great eye contact during meals. On the last day she was having more of a struggle and not wanting to eat or be at the table. I was also more stressed about packing and trying to control things so that may have been part of why she struggled more. Overall she did a fantastic job being present and I also think it totally makes sense that she wanted to nap more than usual. When she was present she was very very present and when she was not she was trying to nap (really wanting some down time). Being around so many people and in a new place probably gave her a lot to process.
I had two fun SR sessions with her where we played for some of the time with a broken soccer ball. There is so much to play with with a broken ball (how many different ways can you try to fix it?). She also really enjoyed playing with puzzles. I would collect the pieces and ask which one she wanted next. If she put a piece in the wrong place I would say "wrong hole!" since we know she loves wrong holes. This seemed to help keep the trying fun. Lastly, we had a fabulous time playing with practicing "th." It really tickles my tongue when I try to emphasize it. Sarah thinks this is funny and thus it really helps to develop a game around practicing. I give her tickles and kisses and cheering with every attempt she makes, which means that she often practices for a few minutes and also really watches my mouth as I say the sound or word.
We have been working/playing at having Sarah use greetings (hi, bye, hello) and at one point she was playing with a toy camera and spontaneously held it to her ear and clearly said "h-ell-o." She also said attempts at goodbye and goodnight more readily than usual when prompted.
Lately, Sarah says she wants to take off the dots or stripes on plates or pictures or fabric. For a while we were just explaining why we couldn't do this. At one point Sonia switched it up and asked Sarah if she could have the dot that Sarah was trying to take off; Sarah picked up a pretend dot and put it in Sonia's hand. We then started doing this with almost anything she asked to take off, pretending to accept it and then smoosh it back into place or eat it or put it in our pockets. This further developed to playing with Amy and pretending to take her nose, much to Amy's delight.
Earlier in the week I had an awesome Option moment, thanks to my dear husband Carl facilitating my internal shift. I was helping Sarah get dressed but was feeling quite angry and impatient and frustrated with myself for not being perfectly happy and patient and Son-Risey. I left Sarah's room and went to talk to Carl. He reminded me that I could make a decision (eg. hide Amy's sweatpants that Sarah wanted to wear) and that Sarah could have her reaction. Ah, such wisdom! I instantly shifted into feeling ok about her reaction because I stopped judging my decision as bad. I think I very often take the screams of my children to mean that I made a bad decision and then I get frustrated feeling like I am stupid or should have done something different. Remembering that I can still stand by my decision and allow for the screaming without doubting myself helped immensely. And once I wasn't resisting the screaming it very quickly stopped and I playfully and energetically encouraged Sarah to get dressed, which she did rapidly.
Now to remember that learning... as I mentioned I was not my most Son-Risey as we were preparing to leave Minnesota. I was impatient and grumpy and anxious and judging myself all over the place for feeling that way. So, back to the beginning... first to accept my own self in all ways. Yup, all. Otherwise I get stuck and don't actually move past the upset. As one of my favorite people says, this was AFOG (Another F*ing Opportunity for Growth). Yes, it was. And maybe that is great. Maybe every time I get stuck or unhappy I can on some level really celebrate that my stuck spots are being brought to my attention. And it doesn't mean I'm a terrible person and why would anyone want to be with me. It just means that I have places where I am not feeling happy and that I would prefer to feel happy in future situations.
I am so deeply grateful for this incredible journey and my extensive group of supportive family and friends and volunteers. I hear many Son-Rise parents talk about having family or friends who don't understand what they are doing or don't fully support it. I have never felt unsupported by any family member or friend. That is pretty huge. So thank you all for joining this journey in whatever way you are joining it.
Sunday, November 18, 2012
November 18
This week we got 25 hours and 20 min and I only did an hour of that! Sonia and Carl and my volunteers are rock stars! After each session I have people write up their reflections on what worked or didn't work or changes they noticed or whatever they want to record. It was such a pleasure to read through these notes from the time I was away. My team is so creative! And Sarah is so amazing! I am deeply grateful for this amazing team and this amazing girl who teaches us all to reach for the most loving place inside ourselves. As I probably write every week and say every day, I am so impressed with Sarah's language. Her clarity and expressiveness increases daily and is so self-driven. Certainly we encourage and celebrate but she is the one to keep learning and adding new words to her repertoire.
I have now attended all of the Son-Rise training courses, with the latest being New Frontiers. Soooooooo awesome! The teachers are so incredibly thoughtful and loving. The classes are always the perfect mix of things to help me change my attitude and then concrete specifics for how to improve my techniques in the playroom and as a team leader. I have taken my understanding about giving feedback to yet another level. I have a better understanding of how to build on Sarah's isms, how to initiate games, how to request things of her, how to create games, how to think creatively about props, and how to use Sarah's motivations to help her reach her goals. For example, my prop could be paper towel tubes and ideas could include: alien antennae, long fingers and toes, ears, put things down the tubes and one could be the wrong hole, drum on walls or the table, walking sticks, big binoculars, etc. In any given game, once she is interested then I can make requests, such as saying a word or phrase or looking at me or doing whatever activity I had modeled. If my goal was having her practice saying hello and goodbye, then maybe whatever item was being stuffed down the tube would say hi/bye; then I would ask her to say either word to reinitiate the activity. I have been doing similar games, but I haven't always been so clear about how to combine her motivations with props to play towards her goals. Tomorrow night we have a group meeting so I can share more about what I learned with my team and we can all brainstorm ideas together.
A key thing I learned is how important it is not to place limits on my own thinking and not to judge any idea, whether or not Sarah goes for it. If I start judging myself then I'm not loving Sarah because I'm busy doing something else (judging myself!). There are specific techniques that are part of the Son-Rise program but the most important thing by far is attitude. Towards myself, my team, and Sarah. Love and acceptance at every step of the way. If I get grumpy and judgmental then it is time to accept myself for that so that I have the space to look at it and make changes.
As with the other training classes I have attended, I was so impressed with my classmates and their thoughtfulness, courage, and love. They are an incredible support network for me, blazing trails of what is possible. It is incredibly beautiful to be with a group of people all willing to do whatever internal work it takes to be 100% there for their kids. Helping Sarah change really means changing myself so I can see her more clearly and freely. I can want the world for her and the more I want the better. The important bit is not to need a darn thing from her in order to feel happy, because if I'm needing something from her then that feels like a push and she can sense that and pushes back in some fashion. So the more I let go, the more cleanly and strongly I can request.
I had a mini-dialogue with Bears where I looked at yet another level of how I creatively blame myself for Sarah's condition. This time I was thinking that if only I had learned my lessons 15 years ago when I attended an 8 week course at Option then I wouldn't have needed Sarah's situation to lead me back for more learning. Possible. But why not decide that if it is true then what a wonderful gift the universe designed to help me learn and grow. And why isn't this also somehow perfect for Sarah? Maybe it was important that I did the 8 week course so that I knew about Option and Son-Rise. Maybe I didn't start any sooner than I did because then I wouldn't have had the amazing team I have now. It is all what I make up and choose to believe. When I choose happier beliefs then I have a lot more momentum and energy for taking care of the present moment with more kindness and effectiveness.
Back on the home front, guest writer Carl says: "Sarah can now put toothpaste on her toothbrush which means that she can do all parts of getting ready for bed all by herself, and she usually does each step all by herself with some gentle encouragement to string the steps together. She has also been getting faster at putting on her clothes in the morning and more independent as well (some mornings at least). This had the added benefit of meaning that Sarah and I could sleep in a little later in the morning, with Jenny and Amy out for the week. I've been continuing to practice giving Sarah more space and time in the Sarah-rise room during semi-exclusive behaviors (or especially when she says "Move back"), and really waiting for a strong invitation of steady eye contact with some words or something else that really feels like she is ready to engage. This has felt good to honor where Sarah is, and it seems like we have better connections afterward when I really am patient and wait until she is fully ready. Patience is good."
Love and acceptance to all of you exactly as you are in all ways. I am so grateful for all of you. Happy Thanksgiving!
I have now attended all of the Son-Rise training courses, with the latest being New Frontiers. Soooooooo awesome! The teachers are so incredibly thoughtful and loving. The classes are always the perfect mix of things to help me change my attitude and then concrete specifics for how to improve my techniques in the playroom and as a team leader. I have taken my understanding about giving feedback to yet another level. I have a better understanding of how to build on Sarah's isms, how to initiate games, how to request things of her, how to create games, how to think creatively about props, and how to use Sarah's motivations to help her reach her goals. For example, my prop could be paper towel tubes and ideas could include: alien antennae, long fingers and toes, ears, put things down the tubes and one could be the wrong hole, drum on walls or the table, walking sticks, big binoculars, etc. In any given game, once she is interested then I can make requests, such as saying a word or phrase or looking at me or doing whatever activity I had modeled. If my goal was having her practice saying hello and goodbye, then maybe whatever item was being stuffed down the tube would say hi/bye; then I would ask her to say either word to reinitiate the activity. I have been doing similar games, but I haven't always been so clear about how to combine her motivations with props to play towards her goals. Tomorrow night we have a group meeting so I can share more about what I learned with my team and we can all brainstorm ideas together.
A key thing I learned is how important it is not to place limits on my own thinking and not to judge any idea, whether or not Sarah goes for it. If I start judging myself then I'm not loving Sarah because I'm busy doing something else (judging myself!). There are specific techniques that are part of the Son-Rise program but the most important thing by far is attitude. Towards myself, my team, and Sarah. Love and acceptance at every step of the way. If I get grumpy and judgmental then it is time to accept myself for that so that I have the space to look at it and make changes.
As with the other training classes I have attended, I was so impressed with my classmates and their thoughtfulness, courage, and love. They are an incredible support network for me, blazing trails of what is possible. It is incredibly beautiful to be with a group of people all willing to do whatever internal work it takes to be 100% there for their kids. Helping Sarah change really means changing myself so I can see her more clearly and freely. I can want the world for her and the more I want the better. The important bit is not to need a darn thing from her in order to feel happy, because if I'm needing something from her then that feels like a push and she can sense that and pushes back in some fashion. So the more I let go, the more cleanly and strongly I can request.
I had a mini-dialogue with Bears where I looked at yet another level of how I creatively blame myself for Sarah's condition. This time I was thinking that if only I had learned my lessons 15 years ago when I attended an 8 week course at Option then I wouldn't have needed Sarah's situation to lead me back for more learning. Possible. But why not decide that if it is true then what a wonderful gift the universe designed to help me learn and grow. And why isn't this also somehow perfect for Sarah? Maybe it was important that I did the 8 week course so that I knew about Option and Son-Rise. Maybe I didn't start any sooner than I did because then I wouldn't have had the amazing team I have now. It is all what I make up and choose to believe. When I choose happier beliefs then I have a lot more momentum and energy for taking care of the present moment with more kindness and effectiveness.
Back on the home front, guest writer Carl says: "Sarah can now put toothpaste on her toothbrush which means that she can do all parts of getting ready for bed all by herself, and she usually does each step all by herself with some gentle encouragement to string the steps together. She has also been getting faster at putting on her clothes in the morning and more independent as well (some mornings at least). This had the added benefit of meaning that Sarah and I could sleep in a little later in the morning, with Jenny and Amy out for the week. I've been continuing to practice giving Sarah more space and time in the Sarah-rise room during semi-exclusive behaviors (or especially when she says "Move back"), and really waiting for a strong invitation of steady eye contact with some words or something else that really feels like she is ready to engage. This has felt good to honor where Sarah is, and it seems like we have better connections afterward when I really am patient and wait until she is fully ready. Patience is good."
Love and acceptance to all of you exactly as you are in all ways. I am so grateful for all of you. Happy Thanksgiving!
Saturday, November 10, 2012
November 10
This week we got 24 hours. I am still hoping to eventually regularly get over 30 hours, but some weeks it just doesn't happen, usually for a multitude of reasons. Sometimes I feel disappointed about this but I also realized that it is really important to me that Amy and Sarah still get time to play together and that Sarah has time outside of the room too. So I think 30-35 hours would be perfect. And maybe 24 hours was perfect for this week too.
Since we started working with Sarah differently to get dressed in the morning (asking more, waiting longer, promising chocolate pudding in a container if she gets dressed fast (in a cup if she moves slowly), pointing out when she is moving slowly, Carl getting dressed at the same time in Sarah's room, me sitting outside her room instead of right next to her), she is now doing a much better job of getting herself dressed in the mornings. Sometimes it still takes some time, but I think the frustration level that I feel is much lower and her capability is getting stronger.
Sometimes I have trouble navigating the line between not manhandling her and still enforcing certain things that really make sense, such as staying dressed when it is cold. Clothing is a rule and I do physically move her a bit to enforce this sometimes, but I tell her I am going to before I do it.
This week Sarah has started telling us to "move back" way more. Often when she tells me to move back I do so in a very large way, running into a radiator or wall or door and then commenting on what I bumped into and how I can't go back any more. This usually results in a few minutes of dialogue with eye contact. I'm not sure if she is then saying "move back" more often because she finds my reaction fun and/or if she has discovered a way to ask for more space and thus not need to frog as much. The most important thing is that we celebrate her telling us to move back since that is a lovely assertion of independence and clear communication. There are times when I don't comply and then I tell her why, explaining that sometimes things are different when Amy is also in the SR room or when we are not in the SR room.
During Sh.'s session this week Sh. showed Sarah her shopping list of what she was going to get at the coop. As they went through it a second time Sh. didn't say some of the items and waited to see if Sarah would supply them, which she did! She contributed "bologna," a word she has not heard for a few years!
Sarah asked to go to Sonia's apartment to visit B., saying B.'s name with great glee.
I have changed our goals slightly to be: imagination play and physical play.
For all the clarity I thought I had about Sarah's exclusivity and "move back"ing, it is always interesting when the duration crosses some line and then I start to doubt myself. Why should the duration matter? If I am trusting her and trusting the ism and delighting in spending time with her and offering her an opportunity to interact, then that is not something that has a time limit. I am grateful for the sessions this week that were primarily exclusive or movebacking; they helped me identify the "hitch in my get-along" as my grandfather would say. I could then reaffirm my beliefs and intentions. I also noticed that in the sessions where I am doubting myself a bit to begin with, I am less effective and have less fun. When I believe in what we are doing, it is more effective and I am more creative and loving and persistent.
We started a new volunteer this week and when she arrived Sarah was cooking a hot dog. I introduced Ay.; Sarah gave her a long look and then began talking to Sonia and me about the slotted/dotted spoon, cooking a hot dog, the hot stove, waiting for big bubbles, seeing tiny bubbles.
In one of my sessions this week Sarah asked for Matching Squares and then told me to move back. After a few minutes of exclusive play, Sarah found a square with non-pareils. She told me "back what non-par" (black and white non-pareils). I asked her a few times if she could find the matching square. She started looking around and turned squares over until she found it!! That was a first, at least with me.
In a few hours I start my drive to MA. I am so excited for what I anticipate will be a wonderful week full of amazing learning. I hope you all have amazing weeks full of learning too!
Since we started working with Sarah differently to get dressed in the morning (asking more, waiting longer, promising chocolate pudding in a container if she gets dressed fast (in a cup if she moves slowly), pointing out when she is moving slowly, Carl getting dressed at the same time in Sarah's room, me sitting outside her room instead of right next to her), she is now doing a much better job of getting herself dressed in the mornings. Sometimes it still takes some time, but I think the frustration level that I feel is much lower and her capability is getting stronger.
Sometimes I have trouble navigating the line between not manhandling her and still enforcing certain things that really make sense, such as staying dressed when it is cold. Clothing is a rule and I do physically move her a bit to enforce this sometimes, but I tell her I am going to before I do it.
This week Sarah has started telling us to "move back" way more. Often when she tells me to move back I do so in a very large way, running into a radiator or wall or door and then commenting on what I bumped into and how I can't go back any more. This usually results in a few minutes of dialogue with eye contact. I'm not sure if she is then saying "move back" more often because she finds my reaction fun and/or if she has discovered a way to ask for more space and thus not need to frog as much. The most important thing is that we celebrate her telling us to move back since that is a lovely assertion of independence and clear communication. There are times when I don't comply and then I tell her why, explaining that sometimes things are different when Amy is also in the SR room or when we are not in the SR room.
During Sh.'s session this week Sh. showed Sarah her shopping list of what she was going to get at the coop. As they went through it a second time Sh. didn't say some of the items and waited to see if Sarah would supply them, which she did! She contributed "bologna," a word she has not heard for a few years!
Sarah asked to go to Sonia's apartment to visit B., saying B.'s name with great glee.
I have changed our goals slightly to be: imagination play and physical play.
For all the clarity I thought I had about Sarah's exclusivity and "move back"ing, it is always interesting when the duration crosses some line and then I start to doubt myself. Why should the duration matter? If I am trusting her and trusting the ism and delighting in spending time with her and offering her an opportunity to interact, then that is not something that has a time limit. I am grateful for the sessions this week that were primarily exclusive or movebacking; they helped me identify the "hitch in my get-along" as my grandfather would say. I could then reaffirm my beliefs and intentions. I also noticed that in the sessions where I am doubting myself a bit to begin with, I am less effective and have less fun. When I believe in what we are doing, it is more effective and I am more creative and loving and persistent.
We started a new volunteer this week and when she arrived Sarah was cooking a hot dog. I introduced Ay.; Sarah gave her a long look and then began talking to Sonia and me about the slotted/dotted spoon, cooking a hot dog, the hot stove, waiting for big bubbles, seeing tiny bubbles.
In one of my sessions this week Sarah asked for Matching Squares and then told me to move back. After a few minutes of exclusive play, Sarah found a square with non-pareils. She told me "back what non-par" (black and white non-pareils). I asked her a few times if she could find the matching square. She started looking around and turned squares over until she found it!! That was a first, at least with me.
In a few hours I start my drive to MA. I am so excited for what I anticipate will be a wonderful week full of amazing learning. I hope you all have amazing weeks full of learning too!
Sunday, November 4, 2012
November 4
This week we got 30 hours! Sonia (Carl's sister) is now officially moved in to her apartment and is my full-time assistant. Woohooo!! She does 4 SR sessions a week and watches Amy so I can get more SR time too. Sonia is also helping with laundry, cleaning, cooking, dishes, etc. It is so wonderful to have this help and she is great company too!
Sarah's language continues to get ever clearer. When she met Sonia's cat B. she did a very good attempt at saying his name. It might have even been fully correct, I just don't remember. Sarah also said Sy. perfectly at least once. She continues to ask for her various volunteers to come in. When she asks for A. to come in she then follows it with "new o(r)k." She often wants to sit on the front steps to wait for her volunteers, though this request is often several hours before their scheduled arrival so we don't do it.
During her bath today Sarah said that sharks, fish, and ducks swim in the water (each was a separate sentence).
Halloween... ah....another opportunity for me to reflect upon why I get so attached to things going MY way and get upset when they don't. Sigh. We let Sarah lie down for 20 minutes before attempting costumes. She didn't sleep but I think giving her a break was good. She was frogging and I was out of my SR mindset of allowing it and into my Halloween mindset that it was time to get dressed! This is why it can be helpful to have two parents. Carl suggested giving her the break, reminding me that it was our desire (not Sarah's) to do trick or treating. Why is it sometimes so hard to remember that the most important thing is having a loving relationship between myself and my family -- rather than getting out the door in costumes by a certain time? With all of these places where I lose my happy equilibrium I am reminding myself that the first step is accepting and acknowledging where I am and then I can change from there. I often try to skip the acknowledging and accepting and that sometimes works but not always.
We did manage a short bit of trick-or-treating, with neither girl particularly interested in candy but very interested in our neighbors, houses, and porches. Sarah went as a Steeler since she loves her jersey and could thus basically be in normal clothes. Amy went as a ladybug, having rejected the Tigger costume every time a choice was offered. (today Amy decided to be Tigger all morning!) We walked through the woods to see the friends with whom we used to spend Halloween before we moved to our new neighborhood. At least at their house we actually did go inside! N. said that she can see a big difference in Sarah's language and interactiveness compared to when we started Sarah-Rise. Yay! I know I write up all these notes to help me remember our progress but it is so easy to adjust to the new normal, even while being amazed and celebrating it, that it is helpful to have reminders. It is getting harder to remember when Sarah couldn't say almost anything she wanted.
This week I went grocery shopping with the girls, as I often do. Sometimes it goes smoothly the whole time and sometimes Sarah says she wants to be done the whole time. Sometimes Amy cries, but rarely. This week the cart I had them in had a broken seat belt so effectively it was one huge double belt. I thought it would be fine. Amy had other ideas. She cried several times and tried to climb out of the seat (which she could do). So we had to just wait for her to settle again. Through all of this Sarah was awesome. She only said she was done once. She ate her carrot. When Amy cried, Sarah gave her kisses. Sarah waited patiently as Amy had her little tantrums. Thank goodness it was only one kid having a melt down. I also didn't lose my own temper, which was an achievement. I was feeling stressed but I kept reminding myself that I never feel good when I yell at the kids.
Today felt like a harder day for both girls and I'm not sure why. I'd like to blame it on Halloween last night (rescheduled in Pittsburgh because of bad weather on the actual day) or on the time change. Maybe the why doesn't matter. It is often humbling though when there is a lot more upset than usual (especially Amy being upset) because then I have a much harder time too. Just when I think I have it all figured out there is something to keep it interesting.
Sarah's language continues to get ever clearer. When she met Sonia's cat B. she did a very good attempt at saying his name. It might have even been fully correct, I just don't remember. Sarah also said Sy. perfectly at least once. She continues to ask for her various volunteers to come in. When she asks for A. to come in she then follows it with "new o(r)k." She often wants to sit on the front steps to wait for her volunteers, though this request is often several hours before their scheduled arrival so we don't do it.
During her bath today Sarah said that sharks, fish, and ducks swim in the water (each was a separate sentence).
Halloween... ah....another opportunity for me to reflect upon why I get so attached to things going MY way and get upset when they don't. Sigh. We let Sarah lie down for 20 minutes before attempting costumes. She didn't sleep but I think giving her a break was good. She was frogging and I was out of my SR mindset of allowing it and into my Halloween mindset that it was time to get dressed! This is why it can be helpful to have two parents. Carl suggested giving her the break, reminding me that it was our desire (not Sarah's) to do trick or treating. Why is it sometimes so hard to remember that the most important thing is having a loving relationship between myself and my family -- rather than getting out the door in costumes by a certain time? With all of these places where I lose my happy equilibrium I am reminding myself that the first step is accepting and acknowledging where I am and then I can change from there. I often try to skip the acknowledging and accepting and that sometimes works but not always.
We did manage a short bit of trick-or-treating, with neither girl particularly interested in candy but very interested in our neighbors, houses, and porches. Sarah went as a Steeler since she loves her jersey and could thus basically be in normal clothes. Amy went as a ladybug, having rejected the Tigger costume every time a choice was offered. (today Amy decided to be Tigger all morning!) We walked through the woods to see the friends with whom we used to spend Halloween before we moved to our new neighborhood. At least at their house we actually did go inside! N. said that she can see a big difference in Sarah's language and interactiveness compared to when we started Sarah-Rise. Yay! I know I write up all these notes to help me remember our progress but it is so easy to adjust to the new normal, even while being amazed and celebrating it, that it is helpful to have reminders. It is getting harder to remember when Sarah couldn't say almost anything she wanted.
This week I went grocery shopping with the girls, as I often do. Sometimes it goes smoothly the whole time and sometimes Sarah says she wants to be done the whole time. Sometimes Amy cries, but rarely. This week the cart I had them in had a broken seat belt so effectively it was one huge double belt. I thought it would be fine. Amy had other ideas. She cried several times and tried to climb out of the seat (which she could do). So we had to just wait for her to settle again. Through all of this Sarah was awesome. She only said she was done once. She ate her carrot. When Amy cried, Sarah gave her kisses. Sarah waited patiently as Amy had her little tantrums. Thank goodness it was only one kid having a melt down. I also didn't lose my own temper, which was an achievement. I was feeling stressed but I kept reminding myself that I never feel good when I yell at the kids.
Today felt like a harder day for both girls and I'm not sure why. I'd like to blame it on Halloween last night (rescheduled in Pittsburgh because of bad weather on the actual day) or on the time change. Maybe the why doesn't matter. It is often humbling though when there is a lot more upset than usual (especially Amy being upset) because then I have a much harder time too. Just when I think I have it all figured out there is something to keep it interesting.
Saturday, October 27, 2012
October 27
This week we got 15 hours and 20 minutes.
This process sometimes feels sort of like magic, even though I know exactly what steps we are taking that seem to make a difference. What feels like magic is that we play in these specific ways in the SR room (child centered, joining, celebrating, building) and then Sarah seems to have an easier time and make progress in areas outside of the playroom. We went to the playground this week and Sarah seemed more alert and less ismy than usual in playground settings. She did follow some kids around a bit, watching their legs and feet, but with much less finger isms/tension and without many "eeee" sounds. She ran up to a dad once and touched his shorts. When he said hi then she looked at him and left. In the past she would have stayed with the pants much longer. She was also really watching the other kids in a calmer, more attentive way. It was the first time that I can remember seeing her at playground and feeling proud, which really says more about how much I have shifted internally than it says about her, though her progress certainly helps.
As I let go of my past bitterness over her condition (why me?) I am now feeling so grateful (thank God Sarah is as she is!). I truly feel like I am shifting into a happier way of being in all ways. I certainly have times that feel struggly but I'm now looking them in they eyeballs more instead of hiding from them or thinking someone else will fix it. I am happier doing laundry and dishes because I'm deciding that if I'm going to do them then I might as well choose to be present and acknowledge that I want to do them (or have them done) and that I don't have to be hurrying to make them done faster than I can actually do them. Often my past resistance to cleaning the kitchen or putting away clothes has been from a feeling that these tasks needed to be done yester-minute, which means that I move grumpily or tightly through them instead of thinking "oh, it is now time to put away clothes. ok. isn't it great that I have these clothes to put away? this is just the right thing to be doing now." I am happier regarding Carl's twice weekly rowing because I am choosing to see it as him taking care of himself so that he can be healthy for his family. This is a shift from my past feelings of grumpy annoyance that I had to do even more childcare on my own. This doesn't mean that I'm not arranging help for myself at these times when I can; it means I experience the time with more acceptance and ease. Same circumstance; I just changed my belief about it. Once again, it is very clear what process I am going through to obtain these happier shifts, and yet part of this also seems like magic. My time in the Sarah-Rise room is helping me be able to choose happiness/peace/presence/love in other situations outside of the room.
Tonight while Sarah and Amy had their bath, Sarah started putting toy clothes on her toy bath dolls. This was spontaneous and to my knowledge has never happened before.
Earlier in the week, Sarah said something in the SR room while facing the rug and I asked if she was talking to me or to the rug. She said "rug." :) That just goes to show me!
Halloween has never been something that Sarah was interested in and it's still not. We went out today as a family to get her a costume. We looked at almost every option in her size and she rejected all of them. My past self would have picked something anyway and forced her into it later. This year we left without a costume. I was feeling very grumpy and disappointed that I had wasted our time and I was thinking she will never be into Halloween and wishing she would be. So... Carl pointed out that it was really great to have done the trip to the store because Sarah actually did consider the costumes and made a definite choice that she didn't want one. I also want to remember that 1) it is ok if she never is into Halloween and 2) maybe she will be next year (if not, refer to #1).
Carl took Sarah to a store again and discussed ahead of time how it was important that she stay with him. She did a great job, with a tantalizing door in view. Similar occurrences have happened all week with me as well, especially if I tell her when she will get to play with the door. I can tell things have improved with this because I keep looking around expecting that she will be heading away from me and as I'm searching for her I realize that she is still right where she was a minute ago.
My friend I. came over for lunch this week and noted that Sarah was much more alert and present and hugely more verbal than she was a year ago, which was the last time we had seen each other. Such additional witnesses to Sarah's progress are always helpful to support my own observations.
Sunday, October 21, 2012
October 21
This week we got 14 hours. It has been a full week of wonderful Sarah moments and of my own learning. I feel twice as effective as a Sarah-Rise team leader and in the playroom.
Coming back from my trip with the intention of not man-handling Sarah or doing so much for her but rather encouraging her to do more for herself, I was astounded to notice how often I usually do things for her. I was in awe of Carl encouraging Sarah with words instead of doing things for her. He is wonderfully patient and creative and unruffled. I have been surprised by how often Sarah has responded to verbal requests when I ask just a little longer than I used to. In the past whenever she was playing in the driver's seat when it was time to go I would go around to the driver's side door and pick her up and carry her back to her seat. This week I just asked a few more times in different ways and she climbed back on her own. Different ways of asking include singing like elmo (la la la la, la la la la, sarah's carseat, sarah loves her carseat, her seat belt too) or whispering or general singing or explaining why I want her to do something or saying that I will give her a certain amount of time to do it after which I will pick her up or do it for her.
I think I say every week that Sarah's language has improved. It seems to improve daily in some way. J. (Mom-Mom) noticed that Sarah's language had improved markedly since September. They had a moment during this visit when Sarah was sitting on J.'s lap and pointing out her nose and glasses. Sarah then pointed to J.'s necklace and said her attempt at "pretty." This may be the first time she has complimented something someone was wearing in a verbal way (we know she gives compliments by hugging pants).
Sarah has also commented that it was pretty and "human" (meaning "humid") outside. She pointed out a "squil on whya(r)" (squirrel on wire). While walking, Sarah said "wash bushes." J. said "watch bush?" Sarah said "ez" to make sure J. knew it was plural "bushes." When we picked Carl up from work one day Sarah said, "go to party." She hasn't been to a party at Carl's work since last Christmas. When it was bedtime on Friday she asked for Pop-Pop, remembering that he had helped with bedtime a few months ago. This is so exciting because it gives us a glimpse into Sarah's memory and her thinking. I love that she wants to convey all of this to us.
Sarah really wants to be able to go down a hallway in the food co-op. This is now a subject that comes up at least daily and we discuss how it is only for people who work there.
Sarah was drawing in a notebook and said her attempt at "writing." She also drew a long vertical line and then as she added dots around it she said "daw leaves" (draw leaves).
She sang her strongest alphabet yet today. We are also working on singing the itsy bitsy spider and twinkle twinkle little star. I am just leaving out more and more words and letting her fill in more and more. It is very cute how she gets quiet when she isn't as sure of herself.
I am so much clearer now after Maximum Impact about Sarah's isms. Isms are any repetitive activities where Sarah doesn't need anyone else there or semi-exclusive repetitive activities where she includes us but only minimally. These isms are Sarah's way of taking care of herself and processing a world that may be more overwhelming or confusing than it is to us. To join her in her isms we learn from her how to play her game. It is more than just imitating; it is joining. In the past I said if she looked at what we were doing then that was an invitation to do more. Technically, yes, but now I am having all of us who work with Sarah wait for a full invitation of eye contact and/or verbal communication. Multiple people have noticed this week that as we do less and speak less that Sarah is actually copying/joining us more, initiating more, and speaking more. This isn't to say she doesn't go for long periods of time isming, but that when she is ready the connection seems to be better.
We had a wonderful team meeting yesterday (with excellent childcare provided by J. and R.). This is the most amazing group of insightful, loving, and thoughtful people. Have I mentioned that I am blessed? The best part of the meeting was when Sarah came into the room. It was like a surprise party for her. She was clearly so delighted to see all of her friends. She made eye contact with everyone and said her best attempt at people's names and made the rounds of touching everyone's pants, with G.'s corduroy as her favorite.
Sunday, October 14, 2012
October 14
I was away this week for more Son-Rise training and with the help of Sonia and Carl and my volunteers we still got Sarah-Rise time! We got 15 1/2hrs and I only did 2 of them.
The name of my training course was Maximum Impact and I am soooooo glad I attended. It was one of the best weeks of my life. AMAZING. The people who run ATCA (Autism Treatment Center of America, home of the Son-Rise Program) are some of the most deeply loving and insightful and helpful people I have ever encountered. I learned so much about how to run a more effective program and how I want to live my life in general. I feel happier and freer and like I can have a more expansive wonderful life.
In case you find yourself thinking, "gee, I wish I had a kid with special needs so I could have such an amazing experience too..." there are easier ways. :) The Option Institute, which is the overall home of ATCA and Son-Rise, offers lots of classes for anyone, including a parenting class for parenting in general. And it is absolutely beautiful there. The foliage at this time of year was breathtaking.
My week helped me clarify my purpose and goals for Sarah. My goal with Sarah-Rise is to help Sarah thrive and flourish to the best of her ability. I will do this through loving her completely and unconditionally. I will look at any place within myself that gets stuck with loving any part of who she is.
I can still set boundaries in our life together so it isn't a five year old running the house, but I can do so without anger. If I do feel angry or sad or hopeless then I can ask myself why so I can see if I am acting on a belief that I'd rather not believe anymore. For example, if Sarah is not figuring out a puzzle and I feel upset...why am I upset? I'm upset because I believe if she doesn't figure this out now then she will never get it and I have failed as her mother. is that true? hmm, I guess not getting the puzzle in this moment doesn't actually say anything about the next moment and it doesn't actually reflect on me as a mother. It means she is having trouble getting a puzzle piece in in this moment.
I had a dialogue with Bears about my feeling sad about the idea that maybe Sarah will never be a typical child. He asked "why, if you don't get what you want, would that be so painful?" For me that is a very freeing question. I haven't yet figured out my full answer but asking the question points out that there is a choice and that maybe I can say "I wanted a typical child, she isn't. Oh. Ok. I can still have an awesome life being me. It doesn't actually have to be painful or mean that I am somehow a bad person. It just means I didn't get what I thought I wanted." I think sometimes I feel sad or angry in the hopes that it will motivate me or change something but ultimately I then feel sluggish and less motivated and just want to eat sugar all day. When I am feeling good then I am actually a more motivated person and mother.
I now understand so much more about different ways to celebrate Sarah and different ways to request things of her. I had thought I was requesting things for a long time (eg. that she put on her pants in the morning). Now I realize I was asking for about 20 seconds and barely scratching the surface of fun ways to request and that before I can clearly request I want to be comfortable in myself with the possibility that she might take hours to put on her pants. If I am comfortable then I can request over and over and over in a light and fun way. If I am uncomfortable and needing her to do something so that I feel happy then my requesting comes from a tight, frozen place which will be much less effective. And why are pants so important anyway? Isn't my communicating a deep love and acceptance of my daughter actually more of a priority? Don't I learn best and want to cooperate most when I myself feel deeply loved and accepted for who I am?
I also learned how to run more effective team meetings and feedback sessions so that our team can be a more cohesive unit.
Sonia noted how Sarah's language has continued to improve. I feel like I notice new words, clarity, and thinking abilities daily. When I called some evenings Sarah would tell me (when prompted) goodnight. Last night when I was giving her a bath she talked about sharks and fish swimming in the water and then said " [play] soap suds in a bath tub." The only word that wasn't fully enunciated was "play."
I am grateful for Sarah and her condition...if I had had two typical children then I think I would still have felt like a harried, overloaded, and overwhelmed mother at times, hemming myself in with shoulds about motherhood, but not asking for big help. Sarah being who she is has helped me learn to ask for and receive help and support in ways I never dreamed of. I had the epiphany while driving that I am never alone in this. If I ever feel stuck there are so many people I can call for help. So many people have thought so clearly about how to love these children with unique challenges that I really don't have to figure it all out on my own. So next time I am struggling I won't wait so long to seek help. The other participants at Max Impact were as impressive and insightful in many ways as the instructors. There is really a world-wide Son-Rise team, with so many people striving to be forces of nature for their children. We are all going to be whooping it up in our playrooms across the globe.
I am grateful forever and always for my mom for being my biggest champion in all that I have ever done. And for making these training weeks possible by coming to be with Amy. And for consistently helping me live a fuller and happier and Jenny-er life.
The name of my training course was Maximum Impact and I am soooooo glad I attended. It was one of the best weeks of my life. AMAZING. The people who run ATCA (Autism Treatment Center of America, home of the Son-Rise Program) are some of the most deeply loving and insightful and helpful people I have ever encountered. I learned so much about how to run a more effective program and how I want to live my life in general. I feel happier and freer and like I can have a more expansive wonderful life.
In case you find yourself thinking, "gee, I wish I had a kid with special needs so I could have such an amazing experience too..." there are easier ways. :) The Option Institute, which is the overall home of ATCA and Son-Rise, offers lots of classes for anyone, including a parenting class for parenting in general. And it is absolutely beautiful there. The foliage at this time of year was breathtaking.
My week helped me clarify my purpose and goals for Sarah. My goal with Sarah-Rise is to help Sarah thrive and flourish to the best of her ability. I will do this through loving her completely and unconditionally. I will look at any place within myself that gets stuck with loving any part of who she is.
I can still set boundaries in our life together so it isn't a five year old running the house, but I can do so without anger. If I do feel angry or sad or hopeless then I can ask myself why so I can see if I am acting on a belief that I'd rather not believe anymore. For example, if Sarah is not figuring out a puzzle and I feel upset...why am I upset? I'm upset because I believe if she doesn't figure this out now then she will never get it and I have failed as her mother. is that true? hmm, I guess not getting the puzzle in this moment doesn't actually say anything about the next moment and it doesn't actually reflect on me as a mother. It means she is having trouble getting a puzzle piece in in this moment.
I had a dialogue with Bears about my feeling sad about the idea that maybe Sarah will never be a typical child. He asked "why, if you don't get what you want, would that be so painful?" For me that is a very freeing question. I haven't yet figured out my full answer but asking the question points out that there is a choice and that maybe I can say "I wanted a typical child, she isn't. Oh. Ok. I can still have an awesome life being me. It doesn't actually have to be painful or mean that I am somehow a bad person. It just means I didn't get what I thought I wanted." I think sometimes I feel sad or angry in the hopes that it will motivate me or change something but ultimately I then feel sluggish and less motivated and just want to eat sugar all day. When I am feeling good then I am actually a more motivated person and mother.
I now understand so much more about different ways to celebrate Sarah and different ways to request things of her. I had thought I was requesting things for a long time (eg. that she put on her pants in the morning). Now I realize I was asking for about 20 seconds and barely scratching the surface of fun ways to request and that before I can clearly request I want to be comfortable in myself with the possibility that she might take hours to put on her pants. If I am comfortable then I can request over and over and over in a light and fun way. If I am uncomfortable and needing her to do something so that I feel happy then my requesting comes from a tight, frozen place which will be much less effective. And why are pants so important anyway? Isn't my communicating a deep love and acceptance of my daughter actually more of a priority? Don't I learn best and want to cooperate most when I myself feel deeply loved and accepted for who I am?
I also learned how to run more effective team meetings and feedback sessions so that our team can be a more cohesive unit.
Sonia noted how Sarah's language has continued to improve. I feel like I notice new words, clarity, and thinking abilities daily. When I called some evenings Sarah would tell me (when prompted) goodnight. Last night when I was giving her a bath she talked about sharks and fish swimming in the water and then said " [play] soap suds in a bath tub." The only word that wasn't fully enunciated was "play."
I am grateful for Sarah and her condition...if I had had two typical children then I think I would still have felt like a harried, overloaded, and overwhelmed mother at times, hemming myself in with shoulds about motherhood, but not asking for big help. Sarah being who she is has helped me learn to ask for and receive help and support in ways I never dreamed of. I had the epiphany while driving that I am never alone in this. If I ever feel stuck there are so many people I can call for help. So many people have thought so clearly about how to love these children with unique challenges that I really don't have to figure it all out on my own. So next time I am struggling I won't wait so long to seek help. The other participants at Max Impact were as impressive and insightful in many ways as the instructors. There is really a world-wide Son-Rise team, with so many people striving to be forces of nature for their children. We are all going to be whooping it up in our playrooms across the globe.
I am grateful forever and always for my mom for being my biggest champion in all that I have ever done. And for making these training weeks possible by coming to be with Amy. And for consistently helping me live a fuller and happier and Jenny-er life.
October 14, by Carl (Sarah's dad)
Since Jenny and Amy were away this week for more Sarah-Rise training, I got to have some quality Sarah & Dad time earlier this week and then my sister Sonia arrived Tuesday to help out. When I mentioned that it was just me and my daughter to another engineer at the company we're working with right now, he said, "So, ice cream for breakfast and legos all day, huh?" It was pretty funny to very truthfully answer yes since it was literally what we had done the day before.
So, here is another Sarah-Rise Update from a little different perspective than usual.
Hanging out with Sarah is really fun these days. We can have real conversations, make jokes, laugh about things, and she often genuinely impresses me with something new. At the same time, a full day with Sarah is long and my patience with certain requests definitely decreases as the day goes on (as does her tolerance of my saying no to those requests). As with most endeavors, living a day in another's shoes gives new respect and understanding.
As a parent, I think there are many tensions that play out in our interactions with our children, and one that I thought about this week is impatience vs laziness. I'm sure there are other words with more positive connotations that could work just as well, but these are the ones I was thinking about so I'll keep them. There are a number of things that need to get done every single day with Sarah (often multiple times): getting dressed, brushing teeth, etc. Many times I am impatient during these events, especially if we have a time deadline, and then I can give up quickly and do many parts of these tasks for her if she is not responding to my requests. But I am also lazy and would really rather not put her pants on for her. This week I decided to really embrace the lazy side and just reject the impatient side. I wanted Sarah to do everything and I was prepared to wait.
So Sarah got dressed almost all by herself every day this past week. I still guided and encouraged (sometimes a lot) each step, but I didn't _do_ anything for her. This made a really big difference and I feel like she responded to it really well. A common management problem is to delegate responsibility without delegating authority, and I realized that I was doing something similar with Sarah. I was requesting that she do these things but then I wasn't letting her do them the way she wanted or on her timeline.
This was an area where it was really helpful to have Jenny at the training because she would tell me about what she was learning when we chatted each evening and then I could apply it right away. As Jenny mentioned in her update, one of the things they worked on was being creative and persistent with requests, and working on expanding the time that it feels OK to continue making the same request (it is amazing how small this is by default - 20 seconds feels very long when I feel like I am being ignored). So the next morning I was much more creative in how I asked Sarah to put her pants on. The result was that we both had more fun, I had no need for being impatient, and I got to enjoy my laziness.
Another place that switched for me this week was a re-realization that Sarah is extremely capable of learning many things but she often needs more practice. Jenny and I had been talking recently that it would be really improve our quality of life and open up new family activity options if Sarah could stay next to us when we went places instead of running off. So this week I decided to practice this. Sarah and I went to a few stores (without having anything that absolutely needed to get done at those places) and beforehand we talked a lot about how important it was that she stay next to me and not run away. Then at the store, I tried to continually talk about this and praise her when she was doing it and talk with her right there when she started straying away. And the whole experience felt really different and hopeful for me. At some point she still ran away so then we left the store and I talked about why we left, but she stayed with me much more during that trip than I had realized she could without me physically holding her hand, pulling her back, etc. Practice is important for everything and these skills are no different. Sarah will get there - she just needs practice.
When we got back from a family walk, a couple of the kids from our block were playing behind the bushes next to our house looking for bugs and generally having a good adventure for a beautiful fall afternoon. Jenny and Amy went inside and Sarah and I stayed out since she really wanted to play in the alley. After I said no to this, she said "Play kids" and looked towards the two kids from our block. So I helped her push through the bushes and after a couple times going back and forth through the bushes in the same way that she loves going through doors, she sat down next to the other kids and started playing in the dirt. The older of the two kids tried to include Sarah and show her some of the bugs that she had found, which didn't get much interest, and then they just sat together down in the dirt for a while. When the other kids wanted to go do the next thing, they asked Sarah if she wanted to come, and Sarah simply said "no" and kept playing in the dirt for a while. Especially in the Sarah-Rise room, but elsewhere as well, Sarah's ability to make eye contact with people, tell stories and jokes, and genuinely connect with people has grown so much. So far this hasn't translated over to her interactions with other kids much. So it was really great to see even this very small interaction take place, knowing that Sarah initiated it herself, and I could start seeing that with practice, Sarah will learn this too and her world will keep getting richer and richer, as will all of ours.
Saturday, October 6, 2012
October 6
This week we got 20 1/2 hours. I'm sending out this email before the week is quite done because I leave tonight to start driving to MA (just with Amy and my mom meets us there to care for Amy) for the next Son-Rise training session. I am spreading the drive over two days because being in the car is not Amy's favorite past-time.
What a difference a week makes. What a difference it makes to have Carl at home. What a difference so many little factors can make.
We had M. here for an Outreach Thurs/Fri, which was as amazingly helpful as always.
Highlights from the week include last weekend when Amy was napping and Carl and I needed to figure out the plan for the afternoon, as we so often do on weekends. This time we asked Sarah to join us in our meeting and "Team-member Sarah" (as I called her) sat on a step stool with us, bursting with exuberance. It was so adorable!
When Sy. asked Sarah what silly faces she could make while they were looking in the mirror, Sarah stuck out her tongue. I didn't know she knew the idea of making silly faces like that. Sometimes when I have directly encouraged her to stick out her tongue she hasn't, so this is doubly encouraging. Sarah also attended to Twister more than she has in the past and when she asked Sy. for something she would attempt to say her name first. That is relatively new to address someone by name as part of a request.
Last Sunday we had friends over who hadn't seen Sarah in a while and E. noticed a big difference in the amount of eye contact from Sarah and in Sarah's language.
M. noticed an improvement in Sarah's clarity of language and in her flexibility and willingness to attend to new games. She also thinks Sarah is ready for more imagination play, suggesting that those of us who work with her "be the play we want to see." The thing I notice every time M. works with Sarah is that Megan fully trusts that Sarah is capable of big play, of silly play, of normal play. The same way that I endeavor not to dumb-down my language, M. doesn't dumb down her play. I don't think I do either but I think M. ups her play to a level to which all of us can aspire. It is always beautiful to watch.
It is also wonderful in general how much Sarah loves her volunteers and talks about wanting them to come in. She brightens when they arrive and often scampers off to the playroom, if she isn't already there waiting for them. Yesterday I hadn't told her ahead of time that G. was coming and the morning was different from her normal Friday morning. When G. knocked on the playroom door and came in Sarah was clearly thrilled, as if receiving an unexpected present.
Last week when G. was here he noticed that when Sarah is upset her words come quickly and pretty clearly, which is not the case with all kids with speech challenges.
Another reason this week has been different is that I received a craniosacral/reiki session from my friend K. that was profoundly helpful. I am still realigning and adjusting to some new beliefs that I feel more ready for now. Mainly I think I am ready to believe that nothing is wrong with Sarah. Yes she is different, unique, and needs extra help. But, perhaps nothing is wrong with that. If nothing is, and never was, wrong then maybe I can let go of my urgency to fix it. If I let go of the urgency I can actually have more space to be with Sarah where she is and ultimately help her grow and flourish more. Then I started worrying "why are we doing sonrise if there is nothing wrong?" Carl reminded me that we are doing Sarah-Rise not to fix Sarah but because it is the best way to support our child. These new beliefs are things I have to consciously choose and re-choose but I feel good when I do so so I will remind myself whenever I can that this is how I want to be thinking.
After getting feedback from M. about my playtime with Sarah, I went back in the next day and had one of the best sessions I've had in a while. M. reminded me that I can lovingly keep after Sarah for an answer if I ask her something. (If there are times I wish she would shut her trap, why would I ever think she is incapable of answering me?) She also suggested bringing in something new when I enter the room. I brought in some pages to color that had pictures of Donald and Elmo. I modeled coloring and invited her to color, asking her to pick which color from some choices I provided. As she moved to other things, such as pretending to be a lump in a bed, I was able to connect to Elmo being a lump or needing his fur colored so he could be a lump. When she asked for Mr. Potato Head I said first we had to give Elmo fur because otherwise he was naked too (she loves having Mr. Potato Head be naked). I know we have been over the idea of having a theme and intention in the past and I teach it to my volunteers, but somehow it had not been salient for me recently. This was a great reminder of how a theme can help me drive the session more while still incorporating every single thing Sarah says or does. We had a blast.
Sarah has never really been into Halloween, but she does love wearing my clothes, Carl's clothes, and Amy's clothes. Last week I mused that if only Sarah had suspenders she could wear my jean shorts without them falling off. Sy. made it happen.
Bears (the original Son-Rise dad) has said, "you can't stop a sunrise." I hear that as: You can't stop a Son-Rise.
You can't stop this Sarah-Rise.
Saturday, September 29, 2012
September 29
This week we got 10 hours. I know long ago that would have felt like a huge achievement. Now that we have reached much bigger numbers and have bigger future goals that feels like a small number. In my consultation with M. she helped me see that I am still running a program, even if the numbers are smaller and that maybe I don't have to be disappointed in myself. I am really ready for M. to be here next week and to go for the next bit of SR training. I need a boost.
This has been a hard week, a hard month, a hard 5 1/2 years. I know that some times haven't felt hard at all (many are easy and joyful and exciting and amazing), but when things do feel hard it is difficult to remember that it's not always that way. Please know that every response, every email of support, every phone call, every question about how things are going, every everything that you do to let me know you are with me really means a very great deal to me. It means a great deal each and every time.
I think this was a particularly hard week for multiple reasons.
1. It is hard being a parent
2. It is extra hard parenting a child with special needs (I continue to be stunned by the ease with which Amy learns things and imitates things and wants to help with things and listens to things and eats things)
3. It is hard having a rambunctious toddler and a child with special needs
(yes, I know they are also my greatest love and joy, and yet...)
4. Last week one of my first grade teachers died
5. Last week a friend that I knew since I was 4 died
6. Sunday-Monday I drove 13 hours to attend the funeral. Still processing the death of someone so young. Still processing that she won't write back any more.
7. Carl and I didn't see each other from Sunday afternoon till Friday night and this was his fourth trip this month
8. Got briefly locked out of the house Friday afternoon (climbed a ladder to get in through the balcony)
9. Every morning is a struggle to get Sarah to dress herself/use the potty in a time frame that feels shorter than a thousand years
10. Amy fell off some equipment at the playground and bumped her head; she was ok but I was shaken.
11. We are still not up to full volunteer strength. Soon. I knew Sept would be this way, but it doesn't make it easier. It does make me appreciate my volunteers even more than ever.
12. Sometimes I am just tired of cleaning up toys and dishes and trying to keep everyone fed
13. Sometimes I am tired of the screaming and the crying and the tantrums
14. Sometimes I am tired of being asked 20 times a day to put on my jean shorts
15. Sometimes I want to wake up and have Sarah be a typical kid
16. Sometimes I am tired of the weird things that Sarah does
17. Sometimes I am tired of reading Amy's books to her over and over and over and over and over
18. The days are long. Even when I have help for some portion of them, they can feel very long.
On the plus side, Sarah has eaten cooked peas two days in a row!
Sarah's eye contact outside of the SR room is sometimes just beautifully present and clear. It is like this inside the room too but not always and not lately for me. Lots of semi-exclusive or fully exclusive behavior and less eye contact in the room (including telling me to move back). I also brought less umph to the room this week. Outside the room we have conversations of many loops as she goes through some of her new things to discuss. One recent event was last weekend when she and Carl tried to fix a broken toy by taking it apart with a screwdriver and putting in new batteries and testing wires. It is still broken. She talks about: turn screwdriver, fix toy, buy a new one, new batteries, new speaker, etc. (not all quite clear to outside listeners but pretty good if you know the context).
When we went on a walk in the rain I had a drop of rain go in my eye and others go up my nose. I also bumped my head on a wet leaf. The next day Sarah said "Don't bump head on wet leaf" and "you bump head on wet leaf" and "dop water up nose" and "dop water in a eye."
When she was playing outside and tripped a caught herself she said "Okay...yay...caught sef hans."
It is great that we are on the verge of my not being so impressed with her level of talking, that I am almost taking it for granted. Wow. I also realize we are now at a point when I need to watch my own language. Ahem. :)
I know some of you probably had harder weeks than I did. I hope the rest of you had easier weeks. I hope we all have a good upcoming week.
Love to all. Thanks for listening.
This has been a hard week, a hard month, a hard 5 1/2 years. I know that some times haven't felt hard at all (many are easy and joyful and exciting and amazing), but when things do feel hard it is difficult to remember that it's not always that way. Please know that every response, every email of support, every phone call, every question about how things are going, every everything that you do to let me know you are with me really means a very great deal to me. It means a great deal each and every time.
I think this was a particularly hard week for multiple reasons.
1. It is hard being a parent
2. It is extra hard parenting a child with special needs (I continue to be stunned by the ease with which Amy learns things and imitates things and wants to help with things and listens to things and eats things)
3. It is hard having a rambunctious toddler and a child with special needs
(yes, I know they are also my greatest love and joy, and yet...)
4. Last week one of my first grade teachers died
5. Last week a friend that I knew since I was 4 died
6. Sunday-Monday I drove 13 hours to attend the funeral. Still processing the death of someone so young. Still processing that she won't write back any more.
7. Carl and I didn't see each other from Sunday afternoon till Friday night and this was his fourth trip this month
8. Got briefly locked out of the house Friday afternoon (climbed a ladder to get in through the balcony)
9. Every morning is a struggle to get Sarah to dress herself/use the potty in a time frame that feels shorter than a thousand years
10. Amy fell off some equipment at the playground and bumped her head; she was ok but I was shaken.
11. We are still not up to full volunteer strength. Soon. I knew Sept would be this way, but it doesn't make it easier. It does make me appreciate my volunteers even more than ever.
12. Sometimes I am just tired of cleaning up toys and dishes and trying to keep everyone fed
13. Sometimes I am tired of the screaming and the crying and the tantrums
14. Sometimes I am tired of being asked 20 times a day to put on my jean shorts
15. Sometimes I want to wake up and have Sarah be a typical kid
16. Sometimes I am tired of the weird things that Sarah does
17. Sometimes I am tired of reading Amy's books to her over and over and over and over and over
18. The days are long. Even when I have help for some portion of them, they can feel very long.
On the plus side, Sarah has eaten cooked peas two days in a row!
Sarah's eye contact outside of the SR room is sometimes just beautifully present and clear. It is like this inside the room too but not always and not lately for me. Lots of semi-exclusive or fully exclusive behavior and less eye contact in the room (including telling me to move back). I also brought less umph to the room this week. Outside the room we have conversations of many loops as she goes through some of her new things to discuss. One recent event was last weekend when she and Carl tried to fix a broken toy by taking it apart with a screwdriver and putting in new batteries and testing wires. It is still broken. She talks about: turn screwdriver, fix toy, buy a new one, new batteries, new speaker, etc. (not all quite clear to outside listeners but pretty good if you know the context).
When we went on a walk in the rain I had a drop of rain go in my eye and others go up my nose. I also bumped my head on a wet leaf. The next day Sarah said "Don't bump head on wet leaf" and "you bump head on wet leaf" and "dop water up nose" and "dop water in a eye."
When she was playing outside and tripped a caught herself she said "Okay...yay...caught sef hans."
It is great that we are on the verge of my not being so impressed with her level of talking, that I am almost taking it for granted. Wow. I also realize we are now at a point when I need to watch my own language. Ahem. :)
I know some of you probably had harder weeks than I did. I hope the rest of you had easier weeks. I hope we all have a good upcoming week.
Love to all. Thanks for listening.
Saturday, September 22, 2012
September 22
This week we got 16 hours.
Sarah is definitely talking more to her volunteers than in the past. She continues to tell stories about what happened to her or to Amy, mainly about falling down the stairs. Sometimes it is a bit confusing to follow whether she is talking about something that did happen or something that might happen or will happen (eg if someone falls down the stairs then they need to go to the hospital). Certainly not everyone understands everything she says but we are so much farther along than we were in January when we started with volunteers. On the one hand, of course we are farther along. On the other hand, I want to continue to notice and celebrate because it keeps me motivated.
This week we had some extra unscheduled time so I took Sarah back to hippotherapy. It went fine but it also reminded me why I had stopped and that it is still a good idea not to go regularly. It is just way too long of a drive for the girls for a very short time on the horse and it messes up Amy's bedtime.
When Sarah wants a certain person she usually says their name followed by "come in." One evening when I was putting her to bed and we were talking about the glowing stars on her ceiling she said "Moon, come in." (because there is no moon sticker on the ceiling.) I love when she can take her language that step farther into spontaneous and new sentences and sentiments.
When I took the girls to Trader Joes saying we were going to buy something for Mom-Mom, Sarah said her version of "buy a birthday cake." This was another new creation by her, showing that she really understood. She also then helped sing "happy birthday" to Sonia, with her solo sounding something like "happy buh tish you" with some lengthy pauses but some lilt too.
Sometimes I can feel tired in a way that isn't really about sleep. Sometimes I just want to let go and stop working so hard. What I love is that when I have that thought of letting go and falling, I never fall even an inch because I know that I have the hands of all of my volunteers and friends and family there holding me up with their time and encouragement and belief in Sarah and in me. Thank you all again and again forever and always.
Sarah is definitely talking more to her volunteers than in the past. She continues to tell stories about what happened to her or to Amy, mainly about falling down the stairs. Sometimes it is a bit confusing to follow whether she is talking about something that did happen or something that might happen or will happen (eg if someone falls down the stairs then they need to go to the hospital). Certainly not everyone understands everything she says but we are so much farther along than we were in January when we started with volunteers. On the one hand, of course we are farther along. On the other hand, I want to continue to notice and celebrate because it keeps me motivated.
This week we had some extra unscheduled time so I took Sarah back to hippotherapy. It went fine but it also reminded me why I had stopped and that it is still a good idea not to go regularly. It is just way too long of a drive for the girls for a very short time on the horse and it messes up Amy's bedtime.
When Sarah wants a certain person she usually says their name followed by "come in." One evening when I was putting her to bed and we were talking about the glowing stars on her ceiling she said "Moon, come in." (because there is no moon sticker on the ceiling.) I love when she can take her language that step farther into spontaneous and new sentences and sentiments.
When I took the girls to Trader Joes saying we were going to buy something for Mom-Mom, Sarah said her version of "buy a birthday cake." This was another new creation by her, showing that she really understood. She also then helped sing "happy birthday" to Sonia, with her solo sounding something like "happy buh tish you" with some lengthy pauses but some lilt too.
Sometimes I can feel tired in a way that isn't really about sleep. Sometimes I just want to let go and stop working so hard. What I love is that when I have that thought of letting go and falling, I never fall even an inch because I know that I have the hands of all of my volunteers and friends and family there holding me up with their time and encouragement and belief in Sarah and in me. Thank you all again and again forever and always.
Sunday, September 16, 2012
September 16
This week we were just shy of 20 hours. It is amazing the difference it makes to have a few volunteers! I am astounded to report that as of now I no longer need any volunteers. Holy cow! With the two new people I recently started/am about to start training, we are all set to achieve 30-40 hours a week once Sonia is here and we are fully up and running. Holy cow! I am just so amazed with how all of this has come together. I am so blessed. So blessed by my volunteers and by my amazing family and friends. Word of mouth is such a powerful tool. I have gotten 4 volunteers because of A.! Because he talked about what he was doing and how much he was enjoying it. It is like thinking you received one present and discovering 4 more inside.
This week when Carl was playing with Sarah and they were drawing on the white board, he asked if she could draw a circle. She did a pretty good job at the circle and then spontaneously said her version of "color in" and proceeded to do a better job of that than ever before. This is exciting in terms of both spontaneity as well as skill. I have requested that she color things in and it is usually a scribble covering the object and reaching far beyond as well. I have modeled coloring things in and staying in the lines. It is exciting when things seem to percolate inside her and come out more fully processed.
When Sarah was playing with Sy. and heard Amy crying, Sarah proceeded to spend 5 minutes interactively talking to Sy. about falling down the stairs and going to the hospital. She had eye contact the whole time. Sarah and I spend lots of time talking about this subject but it is super exciting that she chose to tell another person and that Shephaly could understand! One of my new volunteers, Sc., was also able to understand almost all of what little S told her - another amazing thing. It is so hard to remember a year ago when Sarah barely said any words. She had signs and the beginning sound of many words and a few complete words. Now she says 3-5 word sentences!
Another subject that Sarah likes talking about is when something goes down the wrong tube, such as Amy's juice or water. When G. was here and Amy was drinking and then coughed he said that something went down the wrong pipe. Sarah clearly understood and was tickled by this alternative word choice. In general I make a conscious choice not to dumb down my speaking. Certainly there are times to be simple but there are many other times when I purposely smart up my speaking and use big words and weird words and nerdy words. I so much appreciate when other people also expect that she can understand things.
I hope everything is going down the right tube for all of you.
This week when Carl was playing with Sarah and they were drawing on the white board, he asked if she could draw a circle. She did a pretty good job at the circle and then spontaneously said her version of "color in" and proceeded to do a better job of that than ever before. This is exciting in terms of both spontaneity as well as skill. I have requested that she color things in and it is usually a scribble covering the object and reaching far beyond as well. I have modeled coloring things in and staying in the lines. It is exciting when things seem to percolate inside her and come out more fully processed.
When Sarah was playing with Sy. and heard Amy crying, Sarah proceeded to spend 5 minutes interactively talking to Sy. about falling down the stairs and going to the hospital. She had eye contact the whole time. Sarah and I spend lots of time talking about this subject but it is super exciting that she chose to tell another person and that Shephaly could understand! One of my new volunteers, Sc., was also able to understand almost all of what little S told her - another amazing thing. It is so hard to remember a year ago when Sarah barely said any words. She had signs and the beginning sound of many words and a few complete words. Now she says 3-5 word sentences!
Another subject that Sarah likes talking about is when something goes down the wrong tube, such as Amy's juice or water. When G. was here and Amy was drinking and then coughed he said that something went down the wrong pipe. Sarah clearly understood and was tickled by this alternative word choice. In general I make a conscious choice not to dumb down my speaking. Certainly there are times to be simple but there are many other times when I purposely smart up my speaking and use big words and weird words and nerdy words. I so much appreciate when other people also expect that she can understand things.
I hope everything is going down the right tube for all of you.
Saturday, September 8, 2012
September 8
This week we got 13 hours and 40 minutes. This was mostly me with a little bit of time from Carl and some from my mom, J.
Sarah had a bit of a tumble down the last of our concrete steps outside. I don't know if the fault lies in her new sneakers being sized with room to grow or that they were so interesting to look at that Sarah was a bit too intently focused on seeing her shoes and not on her balance. I know that I was going to get Amy in the car while Sarah came down the steps on her own, as she always does, and I turned to see her tip head first into the cement and roll out of it. So it is good that she sort of knows how to do a somersault because it made it graceful and it was low velocity and a short distance, but cement is cement and one's head is bound to lose in such a pairing. So she had a large goose-egg on her forehead and some scrapes under her eye. I took her to the doctor and he said she was ok. That night she had a fever and was low energy the next day. I took her back to the doctor and they thought maybe she had gotten a virus at the same time. Given that one day later she was totally herself I think maybe the whole fever and low energy day were due to her body processing and healing from the fall. Now Sarah has added to her rules to live by: no fall down stairs and no somersault down stairs. Good rules to be sure.
The day after her fall I did some SR time that was very chill and low-key. At one point we were lying on the floor and she looked at me and said "Mom, fahnd dahk boo paydough" (mom, find dark blue playdough). I frequently model that kind of sentence construction with my name at the start of a sentence. This is the first time she has used that construction beyond "mom, help." So exciting. She is also starting to fine tune some of her language. As I ate a bagel for breakfast she said "cunch....cunch....cunching" (crunching).
When I picked the girls up from daycare on Friday, Sarah noticed me, looked at me with a smile and said "mom! ha" (mom, hi). I know that I keep describing these little moments so one might think they occur all the time. They are picking up in frequency but are still novel enough to be exciting and unexpected each time. It will be marvelous when I start taking them for granted.
As I mentioned, my mom is visiting. Hallelujah! Carl is away for some rowing and business trips so it is really great to have the extra help, especially over the weekend since weekends alone are always the hardest for me. The last time J. saw Sarah was in July and she says there has been a language explosion even since then. I agree. J. also noticed that what Sarah says is more often relevant to what is going on, as opposed to in the past when she was obsessed with certain stories and would reference them out of the blue.
J. had a lovely 40 minute SR playtime all focused around making Sarah's bed and Sarah being a lump that couldn't be smoothed out. This wasn't in the SR room but was very clearly SR play. When I came over at one point to say hi to Sarah she clearly told me to move away. I love when she can so clearly say what she wants. She was also attending to the game and giggling about it for 40 min! That is huge. We definitely hit that length of attention span these days but it isn't all the time. When I introduced the peg board into the room last week, she and A. played interactively with the pegs for 90 min. That might be a record. I often get 20-30 min times but I also often get 10 min interactions before we change to a different activity. The lump in the bed game is extra exciting because it was J.'s game that she introduced to Sarah. Many interactions in the SR room center around Sarah's chosen activity and then we build in new ideas in small ways.
Sarah had a bit of a tumble down the last of our concrete steps outside. I don't know if the fault lies in her new sneakers being sized with room to grow or that they were so interesting to look at that Sarah was a bit too intently focused on seeing her shoes and not on her balance. I know that I was going to get Amy in the car while Sarah came down the steps on her own, as she always does, and I turned to see her tip head first into the cement and roll out of it. So it is good that she sort of knows how to do a somersault because it made it graceful and it was low velocity and a short distance, but cement is cement and one's head is bound to lose in such a pairing. So she had a large goose-egg on her forehead and some scrapes under her eye. I took her to the doctor and he said she was ok. That night she had a fever and was low energy the next day. I took her back to the doctor and they thought maybe she had gotten a virus at the same time. Given that one day later she was totally herself I think maybe the whole fever and low energy day were due to her body processing and healing from the fall. Now Sarah has added to her rules to live by: no fall down stairs and no somersault down stairs. Good rules to be sure.
The day after her fall I did some SR time that was very chill and low-key. At one point we were lying on the floor and she looked at me and said "Mom, fahnd dahk boo paydough" (mom, find dark blue playdough). I frequently model that kind of sentence construction with my name at the start of a sentence. This is the first time she has used that construction beyond "mom, help." So exciting. She is also starting to fine tune some of her language. As I ate a bagel for breakfast she said "cunch....cunch....cunching" (crunching).
When I picked the girls up from daycare on Friday, Sarah noticed me, looked at me with a smile and said "mom! ha" (mom, hi). I know that I keep describing these little moments so one might think they occur all the time. They are picking up in frequency but are still novel enough to be exciting and unexpected each time. It will be marvelous when I start taking them for granted.
As I mentioned, my mom is visiting. Hallelujah! Carl is away for some rowing and business trips so it is really great to have the extra help, especially over the weekend since weekends alone are always the hardest for me. The last time J. saw Sarah was in July and she says there has been a language explosion even since then. I agree. J. also noticed that what Sarah says is more often relevant to what is going on, as opposed to in the past when she was obsessed with certain stories and would reference them out of the blue.
J. had a lovely 40 minute SR playtime all focused around making Sarah's bed and Sarah being a lump that couldn't be smoothed out. This wasn't in the SR room but was very clearly SR play. When I came over at one point to say hi to Sarah she clearly told me to move away. I love when she can so clearly say what she wants. She was also attending to the game and giggling about it for 40 min! That is huge. We definitely hit that length of attention span these days but it isn't all the time. When I introduced the peg board into the room last week, she and A. played interactively with the pegs for 90 min. That might be a record. I often get 20-30 min times but I also often get 10 min interactions before we change to a different activity. The lump in the bed game is extra exciting because it was J.'s game that she introduced to Sarah. Many interactions in the SR room center around Sarah's chosen activity and then we build in new ideas in small ways.
Sunday, September 2, 2012
September 2
This week we got 27 hours and 15 minutes. This was in large part due to wonderful help from A., who came every day to work with Sarah and to watch Amy while I worked with Sarah. Today we bid him a fond farewell as he heads off to NYC. He will be missed.
September looks like it will be a lean month Sarah-Rise-wise because 4 volunteers will be away for part or all of September.
Sarah's eating this week has been a marvel. On three separate occasions she has consumed 2 hot dogs in one sitting! If only someone could have told me this would happen back in the early days when I would be a sobbing mess, cursing and screaming to God in the kitchen because Sarah wouldn't eat even a small jar of baby food. Thank goodness things have gotten better. We certainly still follow a high-calorie regimen but it is with more ease and so much less desperation. I also got her to eat some diced prunes this week by calling them fruit snacks (a term she associates with a packaged treat, even though the fruit snacks I get her are also simply dried squished fruit).
We had a miracle of listening and self-restraint the last time we went to the co-op. Normally I have Sarah in the cart and she clamors to be done and wants to play with the door; or I have her loose but then she often runs to play with the door so I have to keep a firm hold on her hand. This week I let her stay loose on the standing board of the stroller and we did a very fast shopping trip. The miracle was that as we were checking out I told her to stay with me and the stroller until I was done and then I would let her play with the door. She did it! She was mere feet away from said door and was chomping at the bit but she restrained herself and waiting until I said she could play. All went beautifully until I told her it was time to actually leave and then she tried to get away from me so fast that she nearly collided with the counter, to which there is a downhill slope. Still, I count this as an achievement for both of us. I think it was important that I was willing to let her play; if I had just been saying no then I think she wouldn't have waited because she would have been so desperate to get in any door play.
This morning we had a beautiful social moment. The girls and I were returning from a stroller walk and we passed a house where some parents were helping their young children get ready for a bike ride. Sarah (on the standing board) turned her head to look at them and waved and said "ha" (hi) repeatedly until they looked up and said hi. This is not a usual occurrence for us and it is so exciting when Sarah takes these social steps without any prompting.
I hope you are all having a good holiday weekend. As always, thank you all for your love and encouragement. And, as ever, thanks to all of my volunteers (and paid professionals) who give their time and love to make our program the success that it is. Thanks for being our village.
September looks like it will be a lean month Sarah-Rise-wise because 4 volunteers will be away for part or all of September.
Sarah's eating this week has been a marvel. On three separate occasions she has consumed 2 hot dogs in one sitting! If only someone could have told me this would happen back in the early days when I would be a sobbing mess, cursing and screaming to God in the kitchen because Sarah wouldn't eat even a small jar of baby food. Thank goodness things have gotten better. We certainly still follow a high-calorie regimen but it is with more ease and so much less desperation. I also got her to eat some diced prunes this week by calling them fruit snacks (a term she associates with a packaged treat, even though the fruit snacks I get her are also simply dried squished fruit).
We had a miracle of listening and self-restraint the last time we went to the co-op. Normally I have Sarah in the cart and she clamors to be done and wants to play with the door; or I have her loose but then she often runs to play with the door so I have to keep a firm hold on her hand. This week I let her stay loose on the standing board of the stroller and we did a very fast shopping trip. The miracle was that as we were checking out I told her to stay with me and the stroller until I was done and then I would let her play with the door. She did it! She was mere feet away from said door and was chomping at the bit but she restrained herself and waiting until I said she could play. All went beautifully until I told her it was time to actually leave and then she tried to get away from me so fast that she nearly collided with the counter, to which there is a downhill slope. Still, I count this as an achievement for both of us. I think it was important that I was willing to let her play; if I had just been saying no then I think she wouldn't have waited because she would have been so desperate to get in any door play.
This morning we had a beautiful social moment. The girls and I were returning from a stroller walk and we passed a house where some parents were helping their young children get ready for a bike ride. Sarah (on the standing board) turned her head to look at them and waved and said "ha" (hi) repeatedly until they looked up and said hi. This is not a usual occurrence for us and it is so exciting when Sarah takes these social steps without any prompting.
I hope you are all having a good holiday weekend. As always, thank you all for your love and encouragement. And, as ever, thanks to all of my volunteers (and paid professionals) who give their time and love to make our program the success that it is. Thanks for being our village.
Saturday, August 25, 2012
August 25
This week we got 26 hrs, 20 min.
We have fantastic news to share....Carl's sister Sonia will be moving to Pittsburgh in October to help us for the year!!!!!!!!!!!! Hallelujah!! She is fantastic in the playroom and with both girls out of the playroom and with helping our life run more smoothly in general.
Highlights from this week include Sarah attending to my explaining and showing her how to play a small version of a memory game with the matching squares. This only really works when she is eating but she is very attentive during that time. I set up a small game and then I take all the turns. The last time we did this I encouraged her to participate and she did turn over a couple of squares. She is quite the captive audience when she is eating and so we are able to get her to attend to longer explanations of games or longer books. Normally she doesn't really let me read Harold and the Purple Crayon, but she does if she is eating.
N. returned from vacation and was wearing a shirt with a picture of Heinz field that included the Heinz sign, but no other reference to ketchup. Apparently Sarah pointed to it and said "ketchup." Go little Pittsburgh Sarah!
Today when Carl took the girls out for fries at a nearby restaurant that has a large (42") tv, Sarah evidently said "watch football on small tv." I guess she is used to our big projector screen!
During one of my SR playtimes I was lying down and she very clearly said "sit on mom" and proceeded to repeat that several times as she climbed onto me.
When she is talking about animals or sometimes people, Sarah goes through some of her favorite jokes, such as "wad cat" (ride cat), "push cat," "eat cat."
In Amy news, Amy has learned to keep her mouth closed for a kiss and it is perhaps the cutest thing ever as she leans in saying "mmmmm" and then blinks up at me while her lips are pressed against mine. Then if I ask for a hug the soundtrack changes to "aaaahh." If she wants to sing then she says "ooooh." That is also how she refers to shoes.
We have fantastic news to share....Carl's sister Sonia will be moving to Pittsburgh in October to help us for the year!!!!!!!!!!!! Hallelujah!! She is fantastic in the playroom and with both girls out of the playroom and with helping our life run more smoothly in general.
Highlights from this week include Sarah attending to my explaining and showing her how to play a small version of a memory game with the matching squares. This only really works when she is eating but she is very attentive during that time. I set up a small game and then I take all the turns. The last time we did this I encouraged her to participate and she did turn over a couple of squares. She is quite the captive audience when she is eating and so we are able to get her to attend to longer explanations of games or longer books. Normally she doesn't really let me read Harold and the Purple Crayon, but she does if she is eating.
N. returned from vacation and was wearing a shirt with a picture of Heinz field that included the Heinz sign, but no other reference to ketchup. Apparently Sarah pointed to it and said "ketchup." Go little Pittsburgh Sarah!
Today when Carl took the girls out for fries at a nearby restaurant that has a large (42") tv, Sarah evidently said "watch football on small tv." I guess she is used to our big projector screen!
During one of my SR playtimes I was lying down and she very clearly said "sit on mom" and proceeded to repeat that several times as she climbed onto me.
When she is talking about animals or sometimes people, Sarah goes through some of her favorite jokes, such as "wad cat" (ride cat), "push cat," "eat cat."
In Amy news, Amy has learned to keep her mouth closed for a kiss and it is perhaps the cutest thing ever as she leans in saying "mmmmm" and then blinks up at me while her lips are pressed against mine. Then if I ask for a hug the soundtrack changes to "aaaahh." If she wants to sing then she says "ooooh." That is also how she refers to shoes.
Monday, August 20, 2012
August 20
Given that this was a week in which daycare was closed, I am pleased to report that we still managed 19 1/2 hours. And that was without any hours on Saturday because we were driving to Delaware to celebrate Sarah's great grandfather's 91st birthday. It was great to see lots of family and it was also good to see how Sarah handled/struggled with some parts of it. It is more and more clear that she can thrive in settings with just one or two other people and she will chatter away almost non-stop, as she did for part of the car ride home today. When we were at my parents' house with my uncle B. on Saturday afternoon then Sarah was quite present and talkative and B. was aware of a big difference compared to when he saw her in December. He said she seemed more like a regular kid in terms of her presence. C. noted that she was more adventurous physically and better at puzzles, and that is compared to just a few months ago. In settings such as the birthday party where there were lots of people in a new setting with appealing doors, she struggled more and ismed more. There were more (and longer) tantrums and tears when she didn't get what she wanted. She also didn't talk much or make as much eye contact and she wanted to go in and out of doors all the time. I send these updates to so many family members and it is fun when they can also notice a difference in person. It can feel disappointing when the setting is such that people probably couldn't tell that there was much of a change.
During the party at one point I started feeling really sad. This was after observing some typical kids and watching Sarah and feeling disappointed at how hard it is sometimes. Thinking back on this moment I think what really brings the sadness is when I feel like Sarah isn't what I want. It isn't actually about her it is about my disconnecting from my love from her. When we had time just the two of us later in the day it felt so good to reconnect. What I am trying to convey is that it isn't about her special needs or challenges that I get sad. What brings the sadness is when I judge my own kid and separate from her. She is my daughter and I don't want to stop loving her even for a second. Our life is what it is right now and if I label it hard then sometimes that can actually make it feel harder. If I don't label it but just keep reaching for loving responses then it is much better. This is also easier when we are in our Sarah-Rise bubble of life, mostly at home and with very few outings or opportunities for comparison. Admittedly, this life can get tiring and challenging and I certainly don't always do it the way I intend. Sometimes I just want to press pause and have a week to catch up on the rest of life and a week to just be me without chasing two children. But I am also so pleased to be able to spend so much time witnessing Sarah and Amy. I have been trying to teach Amy to kiss and it is so beyond adorable when she wrinkles her nose in cackling delight and moves in for a kiss. And it is so precious to hear Sarah quietly, tentatively, eke out her alphabet song. It is the best song I could hear! That plus Amy's new way of singing that consists of "oooooh."
N. has been away on vacation and Sarah has still asked for him daily and at most moments of distress. Luckily when we were at my parents' house, my brother B. was there. She was attached at the pant leg most of the time. This time she could even say that she wanted to touch his pants. The light brown cargo pants were her favorites. When he wore black pants at the birthday party that was not enough to win over the doors or her tears. N. tends to wear cargo shorts. I think there is something Sarah finds comforting or appealing in certain kinds of pants and shorts. As she gets more language perhaps we will gain more understanding about what it is that she likes so much.
I think I didn't used to understand that Sarah gets overwhelmed and that the way she deals is to ism (to "eeee" and watch feet and do doors). Sometimes she is overwhelmed in an excited way which is why I just thought she was excited. But maybe overly excited could be deemed overwhelm. And it is different from her delighted excitement, such as when A. arrives and starts playfully interacting from the moment they see each other. Then she is giggling and her eyes are sparkling. I think there is also a middle ground where she isms with lids or other things because she likes them and that she sometimes likes them so much that can bring out her "eee" and rigid hands and jaw too. At least in the SR room she can also usually make eye contact and interact a bit along with her hyper-excitedness.
Sarah's talking has been continuing to improve in clarity and the number of words she says consistently at a time and the number of things she tries to say. Now when she asks for something (eg. ipad) she also then immediately adds "es" (yes), not even waiting for us to ask in confirmation if she wants the thing.
Our program is in a bit of flux at the moment as we bid farewell to some of our volunteers and begin scheduling some new ones. J. is about to return to college and two more will be studying abroad for the semester. A. is about to move to NYC. Sy. just started. I have one new person to schedule for her first time and two potentials that I have yet to meet. Flux is not my favorite thing to deal with. In general I like things decided yesterday. I think I've relaxed about schedules a bit but I am also eager to get everything settled for the coming year. Once I have my volunteer schedule settled I will see what other help I need to arrange to meet my goals and keep our life running as smoothly as possible. One step at a time.
If you have sadness, may it pass quickly. If you have joy, may it be full. May you find many things to witness with delight.
During the party at one point I started feeling really sad. This was after observing some typical kids and watching Sarah and feeling disappointed at how hard it is sometimes. Thinking back on this moment I think what really brings the sadness is when I feel like Sarah isn't what I want. It isn't actually about her it is about my disconnecting from my love from her. When we had time just the two of us later in the day it felt so good to reconnect. What I am trying to convey is that it isn't about her special needs or challenges that I get sad. What brings the sadness is when I judge my own kid and separate from her. She is my daughter and I don't want to stop loving her even for a second. Our life is what it is right now and if I label it hard then sometimes that can actually make it feel harder. If I don't label it but just keep reaching for loving responses then it is much better. This is also easier when we are in our Sarah-Rise bubble of life, mostly at home and with very few outings or opportunities for comparison. Admittedly, this life can get tiring and challenging and I certainly don't always do it the way I intend. Sometimes I just want to press pause and have a week to catch up on the rest of life and a week to just be me without chasing two children. But I am also so pleased to be able to spend so much time witnessing Sarah and Amy. I have been trying to teach Amy to kiss and it is so beyond adorable when she wrinkles her nose in cackling delight and moves in for a kiss. And it is so precious to hear Sarah quietly, tentatively, eke out her alphabet song. It is the best song I could hear! That plus Amy's new way of singing that consists of "oooooh."
N. has been away on vacation and Sarah has still asked for him daily and at most moments of distress. Luckily when we were at my parents' house, my brother B. was there. She was attached at the pant leg most of the time. This time she could even say that she wanted to touch his pants. The light brown cargo pants were her favorites. When he wore black pants at the birthday party that was not enough to win over the doors or her tears. N. tends to wear cargo shorts. I think there is something Sarah finds comforting or appealing in certain kinds of pants and shorts. As she gets more language perhaps we will gain more understanding about what it is that she likes so much.
I think I didn't used to understand that Sarah gets overwhelmed and that the way she deals is to ism (to "eeee" and watch feet and do doors). Sometimes she is overwhelmed in an excited way which is why I just thought she was excited. But maybe overly excited could be deemed overwhelm. And it is different from her delighted excitement, such as when A. arrives and starts playfully interacting from the moment they see each other. Then she is giggling and her eyes are sparkling. I think there is also a middle ground where she isms with lids or other things because she likes them and that she sometimes likes them so much that can bring out her "eee" and rigid hands and jaw too. At least in the SR room she can also usually make eye contact and interact a bit along with her hyper-excitedness.
Sarah's talking has been continuing to improve in clarity and the number of words she says consistently at a time and the number of things she tries to say. Now when she asks for something (eg. ipad) she also then immediately adds "es" (yes), not even waiting for us to ask in confirmation if she wants the thing.
Our program is in a bit of flux at the moment as we bid farewell to some of our volunteers and begin scheduling some new ones. J. is about to return to college and two more will be studying abroad for the semester. A. is about to move to NYC. Sy. just started. I have one new person to schedule for her first time and two potentials that I have yet to meet. Flux is not my favorite thing to deal with. In general I like things decided yesterday. I think I've relaxed about schedules a bit but I am also eager to get everything settled for the coming year. Once I have my volunteer schedule settled I will see what other help I need to arrange to meet my goals and keep our life running as smoothly as possible. One step at a time.
If you have sadness, may it pass quickly. If you have joy, may it be full. May you find many things to witness with delight.
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