This week we clocked 14 hours and 15 minutes! Of that time, I personally did 9 hours and 15 minutes in the room with her. Woohoo!!!
We had a lot of fun with various toy pieces (eg matching squares, cakes, candles) and my asking "does it go here?" (emphasis on the "here") and putting it under her shirt or shorts or in her sock. She giggles and giggles and attempts to say "here." To encourage pointing and practicing saying "here," every time she asks for a new toy I ask her where she wants it and I point to two places and ask "here or here?" She often responds with her version of "on right here."
We have also had many giggles over pretending to gobble up the toy cakes and then putting them under our shirts. Usually I am holding a cake in front of her mouth and then she pretends to eat it and then I put it under her shirt and then she giggles. I also pretend to eat cakes in a Cookie Monster-ish way and then end up with about 6 cakes under my shirt. Then I say yum or how full I am. Once when I sort of groaned and said I felt soooo full she responded "fl sck" (feel sick).
We are still going gluten-free. When I was buying more of the Liz Lovelly cookies today to prepare for our vacation next week I noticed that one of our favorite kinds actually does have gluten. I don't know if I was accidentally giving S gluten when I thought we were gf. I hope not! I am going to continue a bit longer since we have come this far already and a friend said sometimes behavior goes through a rocky transition phase with going gluten-free. We did get the blood test results back and Sarah does not have celiac disease and does not have a milk allergy. Yay! What I need to research more is if there can still be benefits to going gluten or casein free even if there is not an allergy. One thing I read suggested waiting 6-8 weeks before adding gluten back in to see if there is an effect.
Bedtimes this week were in general not great. Usually they are no problem and this week they were horrible. We got black-out shades and put them up today and (knock-on-wood) bedtime went easily today. This was also day 3 or 4 with no nap and following 3 or 4 days of not getting as much sleep at night. So we can't quite count chickens, but with kids can you ever really count chickens?
Sometimes I catch myself thinking that the improvements we are seeing are somehow "just" Sarah growing up. Yes. That is exactly it. That is exactly what we are going for, to help her grow up, to accelerate that growing up. When I felt so hopeless about her learning to roll over or crawl, I wish someone could have told me how I would be watching her now go out of the back door and down the steps and out to the sandbox to remove the big cover all by herself. And how the child who didn't put anything in her mouth would now be putting sand in her mouth! Not great but maybe just doing some catch-up sensory experience. (we also have issues in the SR room with her putting small objects in her mouth where it might become dangerous so we have to take them away). I remember marveling at other kids blowing bubbles all by themselves and she has been doing so for a while now. Many of her abilities aren't new but I am renewing my gratitude for them. That helps me keep current despairs at bay.
More and more words are becoming full words and becoming more intelligible to other people. When we started, the volunteers really couldn't understand anything she said and she barely said anything. Now she often speaks and they can understand some of it! Today I was reading Chicka Chicka ABC to her and I paused near the end and she said a quiet but perfect "oh no." She has added the final "l" to "bow-l." When she asks for Chicky Boom, her "boo-m" is a sounded boom, instead of swallowed as it was in the past.
Yesterday when we were in the Sarah-Rise room she said her equivalent of "old house green shorts" ("l-ode h-owse guhnuh-n sh-ohts") I asked if she wore green shorts in the old house. She said "aya." I said "really?" She looked at me as if with a sigh of disdain and said "aya!" It was such a real moment that I cracked up and grabbed her in for a rolling hug.
She had great sparkly attention to my reading one of her favorite books (Watch Me Throw the Ball by Mo Willems) yesterday. On the one hand I think she always likes her favorite books and on the other hand I think that if I find myself noticing that she seemed really present or sparkly or attentive then that is probably real and probably different in some slight way from what I am used to. I think sometimes she zones with the books and this time (maybe because I was holding it instead of letting her hold it) she was really looking at me and smiling.
An ode to Chicky Boom... I love this game. This is not surprising given that I love one of Sarah's books called Chicky Chicky Chook Chook and I love the books Chicka Chicka ABC and Boom Chicka Rock and that I find the word "chicken" inherently funny. Years ago when I had a job involving cleaning a chicken coop I would be laughing to tears if someone (or myself) accidentally said it was time to "cheen the clicken choop." At one point at another job I had the nickname Chicken Lips. There are some things (most often Mo Willems books) where I just feel the personality spilling right out and it is so easy to have fun playing with it or reading it. Chicky Boom is such a game, probably because of the name. It is a very simple game with a wooden balancing board that goes on a rounded block. On top of the board you balance wooden hay bales, wagon wheels, and chickens, of course. When S asks for the game I get it off the shelf and then start dancing and singing "Chicky Boom chicky boom chick-chick-chicky boom." This song comes up throughout our play. I balance the pieces and then Sarah knocks over my chickies! I myself tumble on my back and shriek "you boomed my chickies! who boomed my chickies? you boomed my chickies! oh no!" she giggles often with all of this, including the knocking over of pieces. I think any time I can get her laughing then it is a great time for learning and connection (and expanding attention span). What I love most about Chicky Boom is that I don't have to make any effort to pretend to play or enjoy it. That comes naturally. Who doesn't like booming chickies??
On a side note, one of our latest family moments to establish itself is on the steps. Amy loves to sit on the stairs and have us sit with her. Luckily we have wide stairs so we can have all four of us together. Sometimes it is just me and the girls and sometimes just Amy and me. Amy is clearly adoring her sister more and more. When S comes to give her a hug Amy often shrieks with glee. Amy has also started diving towards Sarah to give Sarah a hug.
Saturday, May 26, 2012
Sunday, May 20, 2012
May 20
This week we got 10 hours and 10 minutes of official time. We also had a new (returning from college) volunteer start on Saturday. YAY!!
Gluten-free eating is still going well, though not with any notable behavioral differences. Sarah's excited hands and jaw movements have lessened but we think they lessened before we went gluten-free. It's possible that I'm not remembering any of this accurately so we will see what happens when we add it back in. If anything, she is having a harder time with transitions and not getting her way. I think this is not related to food but may be related to some developmental progress (I can hope) or potentially the time in the Sarah-Rise room where she has almost total control. If it is the latter then I am willing to accept some more transitional difficulties temporarily in exchange for her burgeoning language.
We are now waiting for the results from blood tests to see if she has celiac disease or a gluten or casein allergy, along with checking her other levels for other things that doctors understand more than I do. She did amazingly well with getting her blood drawn. She stayed still on my lap with minimal fussing. I'm not sure if she is just more used to it or if it was my explaining ahead of time what was going to happen.
Sarah has become very interested in the picture we have on the fridge of her bouncing on the red horse-ball at our old house. This is actually our Sarah-Rise picture from when we were seeking volunteers and the picture I sent to Option when they requested a picture of my child. Sarah keeps seeing it and then asking for help to go in the old house. This sounds sort of like "Hep S-ya owd hOWse." I am glad that she remembers the old house and touched that she wants to go there.
Sometimes her "hep" has expanded with prompting into "hel-p." I often have to ask her a couple times to look at me when she says it when she wants something open but then she usually achieves her goal with out my hep.
She often talks about having "two pehr dnz" (two pairs of jeans) and sometimes we say that she does have two pairs but can only wear one at a time. Once this week she amended her statement after our response to be "wun pehr dnz" (one pair jeans).
I wish I could convey that wonderfulness of the way she says certain words. She often adds the word "today" after things such as "no nap today" or "play cakes today." She says it liltingly as if she is slightly Irish or southern or something "T-daaiy." She also has such a lovely way of saying "aya" which means yes, especially when she is relaxed about wanting something so it is "aii...yaaaa." She has recently started actually saying her version of "yes" so I think "aya's" days are numbered. Speaking of numbers, I believe she said a perfect "ten" today. And when referring to Amy she sometimes says her best approximation of "her" appropriately. Amazing. She also tells me to "buh a" (buy a) whatever she wants that I say we don't have, such as a black dot shirt. So she is starting to get filler and connecting words and some pronouns. I think the distinction of "I" and "you" will be the hardest. By adding the smaller words she is easily increasing her sentence length. I don't remember what she said today at one point but I do remember counting that she said 5 words together.
She can convey so much to us now it is astonishing. We have come so far so fast, relatively speaking. That seems odd to say given that everything with Sarah takes a long time. I think it can be hard to imagine what it is like to have to truly teach your kid each tiny bit of everything. I can have trouble remembering and I have been here for every step of everything. Amy gets things so easily and I take it for granted that of course she will get things easily. Sarah does not get things easily. We teach her EVERYTHING in tiny detail again and again and again and again. I know she certainly is the final person putting things together and that she does learn some things seemingly on her own. But I also really want to notice and celebrate that WE ARE TEACHING A PERSON TO SPEAK who did not easily know how to hear the music of language or how to produce it on her own. So we are doing an amazing thing. And Sarah is so deeply remarkable in how she perseveres to learn EVERYTHING without too much frustration over how much she has to practice. Sometimes I can feel so depressed and mad about our whole situation with Sarah and sometimes I feel incredibly blessed that we get to experience this journey.
Whatever your journey, I hope you have moments of feeling blessed.
Gluten-free eating is still going well, though not with any notable behavioral differences. Sarah's excited hands and jaw movements have lessened but we think they lessened before we went gluten-free. It's possible that I'm not remembering any of this accurately so we will see what happens when we add it back in. If anything, she is having a harder time with transitions and not getting her way. I think this is not related to food but may be related to some developmental progress (I can hope) or potentially the time in the Sarah-Rise room where she has almost total control. If it is the latter then I am willing to accept some more transitional difficulties temporarily in exchange for her burgeoning language.
We are now waiting for the results from blood tests to see if she has celiac disease or a gluten or casein allergy, along with checking her other levels for other things that doctors understand more than I do. She did amazingly well with getting her blood drawn. She stayed still on my lap with minimal fussing. I'm not sure if she is just more used to it or if it was my explaining ahead of time what was going to happen.
Sarah has become very interested in the picture we have on the fridge of her bouncing on the red horse-ball at our old house. This is actually our Sarah-Rise picture from when we were seeking volunteers and the picture I sent to Option when they requested a picture of my child. Sarah keeps seeing it and then asking for help to go in the old house. This sounds sort of like "Hep S-ya owd hOWse." I am glad that she remembers the old house and touched that she wants to go there.
Sometimes her "hep" has expanded with prompting into "hel-p." I often have to ask her a couple times to look at me when she says it when she wants something open but then she usually achieves her goal with out my hep.
She often talks about having "two pehr dnz" (two pairs of jeans) and sometimes we say that she does have two pairs but can only wear one at a time. Once this week she amended her statement after our response to be "wun pehr dnz" (one pair jeans).
I wish I could convey that wonderfulness of the way she says certain words. She often adds the word "today" after things such as "no nap today" or "play cakes today." She says it liltingly as if she is slightly Irish or southern or something "T-daaiy." She also has such a lovely way of saying "aya" which means yes, especially when she is relaxed about wanting something so it is "aii...yaaaa." She has recently started actually saying her version of "yes" so I think "aya's" days are numbered. Speaking of numbers, I believe she said a perfect "ten" today. And when referring to Amy she sometimes says her best approximation of "her" appropriately. Amazing. She also tells me to "buh a" (buy a) whatever she wants that I say we don't have, such as a black dot shirt. So she is starting to get filler and connecting words and some pronouns. I think the distinction of "I" and "you" will be the hardest. By adding the smaller words she is easily increasing her sentence length. I don't remember what she said today at one point but I do remember counting that she said 5 words together.
She can convey so much to us now it is astonishing. We have come so far so fast, relatively speaking. That seems odd to say given that everything with Sarah takes a long time. I think it can be hard to imagine what it is like to have to truly teach your kid each tiny bit of everything. I can have trouble remembering and I have been here for every step of everything. Amy gets things so easily and I take it for granted that of course she will get things easily. Sarah does not get things easily. We teach her EVERYTHING in tiny detail again and again and again and again. I know she certainly is the final person putting things together and that she does learn some things seemingly on her own. But I also really want to notice and celebrate that WE ARE TEACHING A PERSON TO SPEAK who did not easily know how to hear the music of language or how to produce it on her own. So we are doing an amazing thing. And Sarah is so deeply remarkable in how she perseveres to learn EVERYTHING without too much frustration over how much she has to practice. Sometimes I can feel so depressed and mad about our whole situation with Sarah and sometimes I feel incredibly blessed that we get to experience this journey.
Whatever your journey, I hope you have moments of feeling blessed.
Monday, May 14, 2012
May 14
This week we got 9 hours and 20 minutes. Carl was away all week so it felt like a long week.
On one occasion Sarah said a nearly perfect "watch" as opposed to the usual "wash" when she wants to watch something. Her asking to watch various movies has evolved into sometimes being a game where she knows the answer is no and she is just asking to ask. When she recently requested the baby movie "bah-ee m-vv" I worked on getting her to say "bay-bee" by emphasizing the two parts and especially the "b" sounds. I used her belly as a drum for emphasis. She thought this was great fun. She then said something which sounded like "eat baby" and I asked if she was going to eat a baby. She cracked up, saying "no." I'm not sure if that was what she had said at all but I love that she was able to see the ridiculousness of it.
One evening after getting ready for bed, she got up, asking for a piece of ham (seemingly out of the blue since she hasn't had any in over a month). We didn't have any ham but she adjusted easily to a cheese stick when no ham was available.
She is often using 4 words together and is saying many more complete words (with pauses) including new words. When I said "pasta" just now she said "pa-s-t-a." She hasn't ever said that word at all to my knowledge.
When we watch her movies together she actually seems very connected to me, turning to me often, looking at me, telling me what she is seeing. Over the weekend she watched some of Shrek for the first time and was enjoying it and laughing.
She used to talk of saying hi to everyone. now she talks of hugging everyone. She has also started describing clothing she wishes she has but does not have. She wants to have white pants with black seams. She also wants a black dot shirt, but I don't know what she has in mind. My little fashion designer!
Sarah is getting more physically adventurous. She keeps climbing in amy's crib by herself, she was surfing on the humidifier by herself, and she now understands tipping the stroller to get over bumps and pushes the stroller very accurately.
She is still gagging herself but when I can truly ignore it then it is short-lived in the moment and it seems to be diminishing overall. This has been something that she has done off and on through her life. Each time I have to relearn how to really ignore it.
Sarah likes to go in Sarah-Rise room to play and often goes in on her own. We just got a new rug and put up a third shelf so the room is feeling more welcoming overall. Sarah has started talking about wanting to play with the volunteers when they aren't here (it used to just be asking to play with G.). She frequently asks to play with Mom-Mom and other various family members (this isn't new, but just want to remember it in the future when such things might not be in my head).
This week when she started playing with blocks in one of her usual ways of picking one up from the box and putting it back in, I sat across from her and joined in saying "this one goes here!" over and over. She loved it and tried to say "here." That word still needs some work to be clear. I had that word be the theme with whatever we were doing.
It has now been a full week of going gluten-free, with the tiny exception of a few goldfish that she found in the car before I realized what was happening. It is easier than I thought. I'm not being extreme so I hope that allowing her fries isn't messing it all up. Not that she has fries that often anyway. She is ok with the gluten-free mac and cheese and having cheese balls or fritos instead of goldfish or bunny crackers. Finding a granola bar substitute was slightly more problematic but she seems ok just to not have granola bars that often. The savior of this project is the Liz Lovely chocolate cookies. They are giant cookies, very high in calories, and are free of just about everything except chocolate and sugar. They have been a substitute for donuts.
On one occasion Sarah said a nearly perfect "watch" as opposed to the usual "wash" when she wants to watch something. Her asking to watch various movies has evolved into sometimes being a game where she knows the answer is no and she is just asking to ask. When she recently requested the baby movie "bah-ee m-vv" I worked on getting her to say "bay-bee" by emphasizing the two parts and especially the "b" sounds. I used her belly as a drum for emphasis. She thought this was great fun. She then said something which sounded like "eat baby" and I asked if she was going to eat a baby. She cracked up, saying "no." I'm not sure if that was what she had said at all but I love that she was able to see the ridiculousness of it.
One evening after getting ready for bed, she got up, asking for a piece of ham (seemingly out of the blue since she hasn't had any in over a month). We didn't have any ham but she adjusted easily to a cheese stick when no ham was available.
She is often using 4 words together and is saying many more complete words (with pauses) including new words. When I said "pasta" just now she said "pa-s-t-a." She hasn't ever said that word at all to my knowledge.
When we watch her movies together she actually seems very connected to me, turning to me often, looking at me, telling me what she is seeing. Over the weekend she watched some of Shrek for the first time and was enjoying it and laughing.
She used to talk of saying hi to everyone. now she talks of hugging everyone. She has also started describing clothing she wishes she has but does not have. She wants to have white pants with black seams. She also wants a black dot shirt, but I don't know what she has in mind. My little fashion designer!
Sarah is getting more physically adventurous. She keeps climbing in amy's crib by herself, she was surfing on the humidifier by herself, and she now understands tipping the stroller to get over bumps and pushes the stroller very accurately.
She is still gagging herself but when I can truly ignore it then it is short-lived in the moment and it seems to be diminishing overall. This has been something that she has done off and on through her life. Each time I have to relearn how to really ignore it.
Sarah likes to go in Sarah-Rise room to play and often goes in on her own. We just got a new rug and put up a third shelf so the room is feeling more welcoming overall. Sarah has started talking about wanting to play with the volunteers when they aren't here (it used to just be asking to play with G.). She frequently asks to play with Mom-Mom and other various family members (this isn't new, but just want to remember it in the future when such things might not be in my head).
This week when she started playing with blocks in one of her usual ways of picking one up from the box and putting it back in, I sat across from her and joined in saying "this one goes here!" over and over. She loved it and tried to say "here." That word still needs some work to be clear. I had that word be the theme with whatever we were doing.
It has now been a full week of going gluten-free, with the tiny exception of a few goldfish that she found in the car before I realized what was happening. It is easier than I thought. I'm not being extreme so I hope that allowing her fries isn't messing it all up. Not that she has fries that often anyway. She is ok with the gluten-free mac and cheese and having cheese balls or fritos instead of goldfish or bunny crackers. Finding a granola bar substitute was slightly more problematic but she seems ok just to not have granola bars that often. The savior of this project is the Liz Lovely chocolate cookies. They are giant cookies, very high in calories, and are free of just about everything except chocolate and sugar. They have been a substitute for donuts.
Sunday, May 6, 2012
May 6
This week we got 11 hours.
I forgot to mention that a week ago Sarah had a more connected (than ever before) phone conversation with Mom-Mom. Today she started saying "Mom-Mom" in full instead of "Ma-ma." This correction was all of her own accord. She wanted to play with Mom-Mom. (and wanted to ride on a plane together to see G-ma and G-pa)
A few days ago with prompting she said a perfect (if stilted) "do-nut," though she mainly reverts to dropping the "n" when it is in her new phrase of "buy a donut" (sounding more like "buh uh do-ut").
Sh. noted that Sarah's hands seemed more connected to her arms than in the past. Also, after Sh.'s session with Sarah we were all in the family room so Sh. and I could discuss their time and just as we were finishing talking, Sarah climbed into Sh.'s lap and snuggled for a few minutes. What a sign that we are achieving the connection and bond that we want! I know Sarah has always been a snuggle bug but that is usually with me and Carl or in a stimming way with people's pants. This was pure snuggle.
L. pointed out how great it was when we were having our group meeting (when S was supposed to be asleep but wasn't) and Sarah came downstairs and seemed excited to see her friends and went over to them saying some of their names to the best of her ability.
Sarah has a very active interest in our cat now which was not the case at all when she was younger. Now she will change her trajectory to follow him and will pet him while he eats.
When G. last worked with Sarah she was very chill towards the end of the session and then suddenly got up and ran to her room, lay down, reached under her bed, and retrieved a toy school bus that had been missing for weeks. I am amazed that she knew where it was and doubly amazed that the thought of it seemed to come so suddenly and clearly.
And yet another testament to her memory... when K. did Reiki she started working silently with Sarah while S played with blocks. Sarah then turned to engage K., saying her version of "eat rock." (sometimes K. brings crystals which S attempts to put in her mouth). K. didn't have crystals this time so Sarah was remembering past sessions and the two of them had a lovely time laughing, joking, and teasing about not eating rocks and the different colors of pants. Since Sarah sometimes isms on the blocks this purposeful connection away from block play seems extra great.
When S. played with Sarah, they finished their time with lots of eye contact during tickle exchanges. Sarah would point to where she wanted S. to tickle. Then S. would offer herself to be tickled back.
Sarah and I had a great session with playing board games where she didn't want to open the box at first so asked "but how are we supposed to get the dice to shake and roll?" (while playfully shaking her midsection and pretending to roll her. We went through this several times and eventually we opened the box and eventually we took turns rolling and then placing the pieces on the board (I gave her the right piece and then she did the correct placing on her own).
The amounts of fruit and veggies Sarah is eating has doubled or tripled. This is partly my offering more and partly her accepting more. She has eaten broccoli (with the promise of calling Mom-Mom and how excited Mom-Mom would be to hear about it) and raisins this week, both of which are relatively new for her. She's enjoyed a lot of Naked green juice and apple sauce too, which are sometimes rejected and this week have been greedily consumed. Most nights I chop of fresh fruits and veggies and put them in glass containers for me and Carl for the following day. I have now started making Sarah her own little glass container and twice last week she ate almost everything (it is always a medley).
I forgot to mention that a week ago Sarah had a more connected (than ever before) phone conversation with Mom-Mom. Today she started saying "Mom-Mom" in full instead of "Ma-ma." This correction was all of her own accord. She wanted to play with Mom-Mom. (and wanted to ride on a plane together to see G-ma and G-pa)
A few days ago with prompting she said a perfect (if stilted) "do-nut," though she mainly reverts to dropping the "n" when it is in her new phrase of "buy a donut" (sounding more like "buh uh do-ut").
Sh. noted that Sarah's hands seemed more connected to her arms than in the past. Also, after Sh.'s session with Sarah we were all in the family room so Sh. and I could discuss their time and just as we were finishing talking, Sarah climbed into Sh.'s lap and snuggled for a few minutes. What a sign that we are achieving the connection and bond that we want! I know Sarah has always been a snuggle bug but that is usually with me and Carl or in a stimming way with people's pants. This was pure snuggle.
L. pointed out how great it was when we were having our group meeting (when S was supposed to be asleep but wasn't) and Sarah came downstairs and seemed excited to see her friends and went over to them saying some of their names to the best of her ability.
Sarah has a very active interest in our cat now which was not the case at all when she was younger. Now she will change her trajectory to follow him and will pet him while he eats.
When G. last worked with Sarah she was very chill towards the end of the session and then suddenly got up and ran to her room, lay down, reached under her bed, and retrieved a toy school bus that had been missing for weeks. I am amazed that she knew where it was and doubly amazed that the thought of it seemed to come so suddenly and clearly.
And yet another testament to her memory... when K. did Reiki she started working silently with Sarah while S played with blocks. Sarah then turned to engage K., saying her version of "eat rock." (sometimes K. brings crystals which S attempts to put in her mouth). K. didn't have crystals this time so Sarah was remembering past sessions and the two of them had a lovely time laughing, joking, and teasing about not eating rocks and the different colors of pants. Since Sarah sometimes isms on the blocks this purposeful connection away from block play seems extra great.
When S. played with Sarah, they finished their time with lots of eye contact during tickle exchanges. Sarah would point to where she wanted S. to tickle. Then S. would offer herself to be tickled back.
Sarah and I had a great session with playing board games where she didn't want to open the box at first so asked "but how are we supposed to get the dice to shake and roll?" (while playfully shaking her midsection and pretending to roll her. We went through this several times and eventually we opened the box and eventually we took turns rolling and then placing the pieces on the board (I gave her the right piece and then she did the correct placing on her own).
The amounts of fruit and veggies Sarah is eating has doubled or tripled. This is partly my offering more and partly her accepting more. She has eaten broccoli (with the promise of calling Mom-Mom and how excited Mom-Mom would be to hear about it) and raisins this week, both of which are relatively new for her. She's enjoyed a lot of Naked green juice and apple sauce too, which are sometimes rejected and this week have been greedily consumed. Most nights I chop of fresh fruits and veggies and put them in glass containers for me and Carl for the following day. I have now started making Sarah her own little glass container and twice last week she ate almost everything (it is always a medley).
Subscribe to:
Posts (Atom)