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.
Monday, May 14, 2012
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).
Sunday, April 29, 2012
April 29
This week we got 7 1/2 hours.
If anything I feel like Sarah's language has improved even further. It is hard to remember when she couldn't express herself so much. We still have a ways to go so that other people can understand her as well as Carl and I can. Sarah's teacher commented that her receptive language has exploded. Yay! Some of her favorite things to say lately:
"pa-sh wa-t bus" (push white bus) - if asked where or questioned at all she says "naoo!"
"two pay-ahr wa-t pa-s" (two pair white pants) - she does have two pairs of white pants
"dada wad bus to-geh-er" (Dad ride bus together) - she wants to ride the bus together with dad
"laht baoo cahr gma gpa!" (light blue car grandma grandpa) - grandma and grandpa do in fact have a light blue car
We are working on expanding some of her words such as "yote" to be yogurt
If she bumps some part of herself she often says she needs to wash it; now she has also expanded to say "l-k boo" which means for me to look at her boo-boo
It is interesting how certain things really make an impression on her. On Saturday I did Sarah-Rise time in the family room with Amy there too. I brought out the big wooden puzzle and Sarah took the crab piece and threw it across the room. In the past I would have taken this as a rejection. Now I understand more how to loop in what she does to my overall goal of increasing her attention span. So I said "the crab went far!" and then she went to get it and moved it farther and I said "the crab is going far away." Most of our puzzle play then consisted of her moving the crab and saying "cab go fahr." I then made distressed faces and pretended to wipe away tears and said "crab, come back!" Crab never did receive Sarah's help to come back but she did spend a tiny bit of time with the other pieces and getting them in the board and she was very interested in my mock distress.
I have been working on telling her ahead of time when I am going to do something to her person (eg wipe her nose, pick her up). It is striking to me how often I do things to her person and don't say anything. It definitely lessens her resistance when I tell her that I'm going to wipe her face after a meal and that it will feel cold and wet. I have also been telling her that I will count to three and then do whatever thing needs to happen next unless she is already starting to do it.
Sometimes I am amazed at Sarah's memory. Yesterday I had taken the tray off of Amy's high chair for washing. I then went out for some me-time and Carl watched the girls. At one point he was with Amy and came into the dining room to find Sarah sitting in Amy's high chair on top of the anti-slip pad that she had removed from under the upstairs hall rug! When Sarah was much younger we used to have her sit on an anti-slip pad in the high chair, but that was years ago! I am amazed that she not only remembered but knew where to find one to recreate the experience she wanted.
She is getting much better with putting on her seat belt. I have to help some but not much and she is often insistent that she do it herself (indicated by "S-ya!" (Sarah).
This week I've been reading What You Can Do Right Now to Help Your Child with Autism by Jonathan Levy, who used to work at the Autism Treatment Center of America (home of the Son-Rise Program). It is so helpful. So simple, clear, and concise. He is explaining everything that I learned in the start-up training and from M. It is so helpful to keep hearing/reading things so that I really get it. One story that he shared especially impressed me. He worked with a family who came for an intensive and their child ran around the room carrying a stick 98% of the time. This is what the child always did (wearing only a diaper). The staff spent the entire week joining in the stick carrying. The family went home and started their Son-Rise program and worked with him all day every day, joining in stick carrying. They did this for 8 months with no change in the child. And then after 8 months he started to make eye contact and connect! WOW!! I am so impressed that the family believed enough to carry on for 8 months. That helps me realize that I can play with cakes and candles every day for however long Sarah loves them.
I hope you all had a lovely weekend. Thank you as always for your support in this amazing adventure.
If anything I feel like Sarah's language has improved even further. It is hard to remember when she couldn't express herself so much. We still have a ways to go so that other people can understand her as well as Carl and I can. Sarah's teacher commented that her receptive language has exploded. Yay! Some of her favorite things to say lately:
"pa-sh wa-t bus" (push white bus) - if asked where or questioned at all she says "naoo!"
"two pay-ahr wa-t pa-s" (two pair white pants) - she does have two pairs of white pants
"dada wad bus to-geh-er" (Dad ride bus together) - she wants to ride the bus together with dad
"laht baoo cahr gma gpa!" (light blue car grandma grandpa) - grandma and grandpa do in fact have a light blue car
We are working on expanding some of her words such as "yote" to be yogurt
If she bumps some part of herself she often says she needs to wash it; now she has also expanded to say "l-k boo" which means for me to look at her boo-boo
It is interesting how certain things really make an impression on her. On Saturday I did Sarah-Rise time in the family room with Amy there too. I brought out the big wooden puzzle and Sarah took the crab piece and threw it across the room. In the past I would have taken this as a rejection. Now I understand more how to loop in what she does to my overall goal of increasing her attention span. So I said "the crab went far!" and then she went to get it and moved it farther and I said "the crab is going far away." Most of our puzzle play then consisted of her moving the crab and saying "cab go fahr." I then made distressed faces and pretended to wipe away tears and said "crab, come back!" Crab never did receive Sarah's help to come back but she did spend a tiny bit of time with the other pieces and getting them in the board and she was very interested in my mock distress.
I have been working on telling her ahead of time when I am going to do something to her person (eg wipe her nose, pick her up). It is striking to me how often I do things to her person and don't say anything. It definitely lessens her resistance when I tell her that I'm going to wipe her face after a meal and that it will feel cold and wet. I have also been telling her that I will count to three and then do whatever thing needs to happen next unless she is already starting to do it.
Sometimes I am amazed at Sarah's memory. Yesterday I had taken the tray off of Amy's high chair for washing. I then went out for some me-time and Carl watched the girls. At one point he was with Amy and came into the dining room to find Sarah sitting in Amy's high chair on top of the anti-slip pad that she had removed from under the upstairs hall rug! When Sarah was much younger we used to have her sit on an anti-slip pad in the high chair, but that was years ago! I am amazed that she not only remembered but knew where to find one to recreate the experience she wanted.
She is getting much better with putting on her seat belt. I have to help some but not much and she is often insistent that she do it herself (indicated by "S-ya!" (Sarah).
This week I've been reading What You Can Do Right Now to Help Your Child with Autism by Jonathan Levy, who used to work at the Autism Treatment Center of America (home of the Son-Rise Program). It is so helpful. So simple, clear, and concise. He is explaining everything that I learned in the start-up training and from M. It is so helpful to keep hearing/reading things so that I really get it. One story that he shared especially impressed me. He worked with a family who came for an intensive and their child ran around the room carrying a stick 98% of the time. This is what the child always did (wearing only a diaper). The staff spent the entire week joining in the stick carrying. The family went home and started their Son-Rise program and worked with him all day every day, joining in stick carrying. They did this for 8 months with no change in the child. And then after 8 months he started to make eye contact and connect! WOW!! I am so impressed that the family believed enough to carry on for 8 months. That helps me realize that I can play with cakes and candles every day for however long Sarah loves them.
I hope you all had a lovely weekend. Thank you as always for your support in this amazing adventure.
Sunday, April 22, 2012
April 22
This week we got a little over 12 hours. Since I count Sun-Sat as the week, part of this count was from the Outreach.
Monday I had a volunteer to watch Amy and I got a solid and wonderful 2 hours with Sarah. It was one of the best sessions ever. I felt more energized and creative and relaxed. I picked Bunny's Noisy Book as my theme. When I first showed it to S she clearly said no so I tossed it aside saying "no book!" then she wanted to eat at the table in front of the mirror. As she pressed the yogurt top I talked about the sounds it made. Then as she was eating and started talking about honey I said that bees make honey and I grabbed the book and showed a picture of a bee. She then allowed and attended to a lot of looking in the book and my pretending to be a bunny jumping down a hole or eating or stretching or sneezing (she did pretend sneezes). She tried saying "down hole" several times. So we had a pretty solid hour and half of connected play and then she asked for the cakes/candles. My asking for criss-cross sitting avoided the frog (exclusive behavior where S sits in a W position and then lays down on her belly and mushes herself into the carpet; we don't join this ism) and we played with candles for half an hour. A tiny bit of that was engaged (singing happy bday to a bunny who progressively got older, pretending orange candles were carrots or bunny teeth). Most of it was joining, sometimes dropping candles in each others hands. I felt so much more at ease and could enjoy this time as hanging out with my sweet girl playing with a toy she likes. When we were done our time and came down to say goodbye to my friend, Sarah made very solid eye contact with her twice. I know that often she does make good eye contact, but something about this felt very clear and solid, somehow notable. Carl then had a good hour that evening working outside with ball throwing as a theme.
Friday night I started training a new volunteer and saw more clearly than ever that it is important to have people other than me to work with Sarah. She needs the variety and each person brings new ideas. When Sarah started playing with crayons and putting them in a box and dumping them out, volunteer S. made a game out of it and was genuinely enjoying playing with the crayons. Since I am so used to Sarah playing with crayons or candles or whatever in an exclusive way I might have not engaged her in play and instead joined. But we want to attempt engaged play until Sarah clearly indicates she needs her space and is exclusive and then we join. What was beautiful was seeing a new and fresh approach to the crayons, doing what Sarah wanted but with free enthusiasm and no assumptions. After a few minutes, Sarah then shifted her body so she was closer to volunteer S. Sarah is very clear with her body language. When she wants to block Amy from sharing a toy, she body checks her. So this nudging in closer to the volunteer was a clear indication that Sarah liked the game and the connection and that is what we are going for!
I have been so proud of all of my volunteers for taking in M.'s feedback and acting upon it and for being open to my feedback. Go team!!.
I have been reading Barry Neil Kaufman's To Love is to be Happy With. It is excellent and is helping me think differently about parenting.
Monday I had a volunteer to watch Amy and I got a solid and wonderful 2 hours with Sarah. It was one of the best sessions ever. I felt more energized and creative and relaxed. I picked Bunny's Noisy Book as my theme. When I first showed it to S she clearly said no so I tossed it aside saying "no book!" then she wanted to eat at the table in front of the mirror. As she pressed the yogurt top I talked about the sounds it made. Then as she was eating and started talking about honey I said that bees make honey and I grabbed the book and showed a picture of a bee. She then allowed and attended to a lot of looking in the book and my pretending to be a bunny jumping down a hole or eating or stretching or sneezing (she did pretend sneezes). She tried saying "down hole" several times. So we had a pretty solid hour and half of connected play and then she asked for the cakes/candles. My asking for criss-cross sitting avoided the frog (exclusive behavior where S sits in a W position and then lays down on her belly and mushes herself into the carpet; we don't join this ism) and we played with candles for half an hour. A tiny bit of that was engaged (singing happy bday to a bunny who progressively got older, pretending orange candles were carrots or bunny teeth). Most of it was joining, sometimes dropping candles in each others hands. I felt so much more at ease and could enjoy this time as hanging out with my sweet girl playing with a toy she likes. When we were done our time and came down to say goodbye to my friend, Sarah made very solid eye contact with her twice. I know that often she does make good eye contact, but something about this felt very clear and solid, somehow notable. Carl then had a good hour that evening working outside with ball throwing as a theme.
Friday night I started training a new volunteer and saw more clearly than ever that it is important to have people other than me to work with Sarah. She needs the variety and each person brings new ideas. When Sarah started playing with crayons and putting them in a box and dumping them out, volunteer S. made a game out of it and was genuinely enjoying playing with the crayons. Since I am so used to Sarah playing with crayons or candles or whatever in an exclusive way I might have not engaged her in play and instead joined. But we want to attempt engaged play until Sarah clearly indicates she needs her space and is exclusive and then we join. What was beautiful was seeing a new and fresh approach to the crayons, doing what Sarah wanted but with free enthusiasm and no assumptions. After a few minutes, Sarah then shifted her body so she was closer to volunteer S. Sarah is very clear with her body language. When she wants to block Amy from sharing a toy, she body checks her. So this nudging in closer to the volunteer was a clear indication that Sarah liked the game and the connection and that is what we are going for!
I have been so proud of all of my volunteers for taking in M.'s feedback and acting upon it and for being open to my feedback. Go team!!.
I have been reading Barry Neil Kaufman's To Love is to be Happy With. It is excellent and is helping me think differently about parenting.
Sunday, April 15, 2012
April 15
Woohooo! We got 12hrs and 20 min this week! And it was a week where we were traveling at the beginning! A large part of our hours are due to M. being with us for the Outreach. It was absolutely amazing! So helpful!! I learned so much from the Start-Up last summer but there were aspects that I didn't fully understand and M. clarified them beautifully. It was really wonderful watching her work with Sarah. She was so relaxed about being in the room, so respectful of letting Sarah do what she needed to do (any isming or exclusivity) but when Sarah was reachable and interested, M. was full-on energy and fun and engaging. She played with the underlying assumption that of course Sarah can play games and would want to. M. played with Sarah as if Sarah was a typical kid (but with all the bits of Son-Rise that give Sarah time and encouragement) and would enjoy things that any kid might enjoy, bringing in more imaginative play and the idea of games. These areas are ones where I think I kept waiting for Sarah to show me more signs that she was ready. She is ready, I just need to be modeling it and not expecting that she will necessarily participate in a big way, but I can model a ton of stuff and have her do tiny bits of participation as she is paying attention to the modeling. We are teaching her how to play. M. showed us how to help grow Sarah's attention span by picking a theme and returning to it throughout the session, looping it in with whatever Sarah brought up or wanted to play with. Picking a theme actually makes it easier to be creative on my end too.
Watching M. continue to come back to her theme reminded me of the way I kept trying to convince Carl's sister Sonia to move in down the street from us (she lives in Washington state). Anytime anything was said where I could possibly make a reference to the house for rent on our block, I would say "you know, there's a house..." I was both serious and joking and totally behind my cause, taking breaks and returning to it. A broken record. So that is how I intend to go forward with Sarah. I will be a respectful broken record. I will give her space to do her favorite things but also keep selfishly coming back to me, me, me, tying her favorite subjects into something to do with me or the theme we are playing around. And I hope I can have fun with it the way I was laughing at myself as I kept telling Sonia about the house. I need to let my inner big buffoon out. I know this must come as a shock to all of you that I am a big goof. :)
I am super pumped up to go forward and I can also feel daunted because it is easy to raise the bar for myself to somehow need to be as awesome and skilled as M. instantly and be a more informative team leader instantly. Well, I think I need to just go forward as me and do my best. I can't really do anything other than that anyway.
Twice this weekend when we were going to drive somewhere, Sarah climbed into her seat and almost did her seatbelt independently. She just needed a bit of help. This is a much more focused and helpful thing for her to do than sometimes. She often climbs in but not always so directly and usually needs more help with the belt or I just do it without waiting for her to try.
Eating is going pretty well, thanks once again to cyproheptadine. We had almost been back at pre-pneumonia weight but the travel set us back a bit, as is common for us.
In terms of language, M. made the good point that Sarah may think she is being clear when she says things so the next step for us may be repeating what Sarah actually says and then helping her to be clearer. Right now we often repeat back what we know she intended to say and we say it perfectly so Sarah might not be realizing she didn't quite hit the mark.
Once again I am bowled over with gratitude for the amazing volunteers giving their time and love and energy to playing with Sarah and playing with Amy so Carl or I can play with Sarah. It is a priceless gift. A deep thank you to those of you helping make this possible and to those cheering us on. It all helps.
Watching M. continue to come back to her theme reminded me of the way I kept trying to convince Carl's sister Sonia to move in down the street from us (she lives in Washington state). Anytime anything was said where I could possibly make a reference to the house for rent on our block, I would say "you know, there's a house..." I was both serious and joking and totally behind my cause, taking breaks and returning to it. A broken record. So that is how I intend to go forward with Sarah. I will be a respectful broken record. I will give her space to do her favorite things but also keep selfishly coming back to me, me, me, tying her favorite subjects into something to do with me or the theme we are playing around. And I hope I can have fun with it the way I was laughing at myself as I kept telling Sonia about the house. I need to let my inner big buffoon out. I know this must come as a shock to all of you that I am a big goof. :)
I am super pumped up to go forward and I can also feel daunted because it is easy to raise the bar for myself to somehow need to be as awesome and skilled as M. instantly and be a more informative team leader instantly. Well, I think I need to just go forward as me and do my best. I can't really do anything other than that anyway.
Twice this weekend when we were going to drive somewhere, Sarah climbed into her seat and almost did her seatbelt independently. She just needed a bit of help. This is a much more focused and helpful thing for her to do than sometimes. She often climbs in but not always so directly and usually needs more help with the belt or I just do it without waiting for her to try.
Eating is going pretty well, thanks once again to cyproheptadine. We had almost been back at pre-pneumonia weight but the travel set us back a bit, as is common for us.
In terms of language, M. made the good point that Sarah may think she is being clear when she says things so the next step for us may be repeating what Sarah actually says and then helping her to be clearer. Right now we often repeat back what we know she intended to say and we say it perfectly so Sarah might not be realizing she didn't quite hit the mark.
Once again I am bowled over with gratitude for the amazing volunteers giving their time and love and energy to playing with Sarah and playing with Amy so Carl or I can play with Sarah. It is a priceless gift. A deep thank you to those of you helping make this possible and to those cheering us on. It all helps.
Tuesday, April 10, 2012
April 10
This update is coming to you later than usual in the week because we were away over the weekend visiting Carl's family in MN. Given the travel and other hiccups in the schedule I am pleased that we got 6 1/2 hrs of SR time, including a tiny bit in MN. The girls traveled quite well and the trip was wonderful overall. Multiple family members remarked upon how much better Sarah's eye contact was compared to when they saw her several months ago. The improved clarity and amount of her speech was also noticed. YAY!
On Easter we went to church and this was the first time that Sarah seemed to understand a bit of what was going on. Keep in mind that we only go to church a couple times a year (if that many) and that the last time we went with her was a year ago, when she lasted less than a minute. This year she was saying that we were going to church (when we parked there were two bunnies in the adjacent yard!!) and she paid focused attention to everything for about 5 min before declaring that she was done. I took the girls down to the nursery to play and they both did quite well there. Sarah was very good about waiting her turn to wash hands and then get her snack of goldfish and water, which she ate very demurely. Amy was everywhere and into almost everything, as usual.
A new game Sarah enjoys is going "back and forth." This involves whatever she is moving back and forth, be it toy bus or shopping cart. I then ask if she is going back and forth and she attempts to repeat the words. Then I grab her around the belly and back and move her mid-section rapidly back and forth and she laughs and we repeat. Sometimes the "back" is very drawn out on my part "baaaaack" to elicit her attention and anticipation.
On Easter we went to church and this was the first time that Sarah seemed to understand a bit of what was going on. Keep in mind that we only go to church a couple times a year (if that many) and that the last time we went with her was a year ago, when she lasted less than a minute. This year she was saying that we were going to church (when we parked there were two bunnies in the adjacent yard!!) and she paid focused attention to everything for about 5 min before declaring that she was done. I took the girls down to the nursery to play and they both did quite well there. Sarah was very good about waiting her turn to wash hands and then get her snack of goldfish and water, which she ate very demurely. Amy was everywhere and into almost everything, as usual.
A new game Sarah enjoys is going "back and forth." This involves whatever she is moving back and forth, be it toy bus or shopping cart. I then ask if she is going back and forth and she attempts to repeat the words. Then I grab her around the belly and back and move her mid-section rapidly back and forth and she laughs and we repeat. Sometimes the "back" is very drawn out on my part "baaaaack" to elicit her attention and anticipation.
Sunday, April 1, 2012
April 1
This week we got 10hrs 5min. I had a consultation on Wed with M., a Son-Rise expert, and she had some good ideas that I will implement in terms of potty training. I have scheduled an Outreach with M. for mid-April. An Outreach is where M. will come to our house for 3 days and work with Sarah and observe me, Carl, and our volunteers working with Sarah, and then give us ideas and answer any questions we have. I think this is an amazing opportunity to take our program to the next level. I am feeling slightly daunted about reaching out into the broader community to get more volunteers to increase our weekly times. It felt easier the first time since I was reaching out to local friends and acquaintances. I did have the epiphany that I need not post flyers or things on local facebook groups if I'm not comfortable doing so. At the moment I am letting myself brainstorm the various options of where to connect with more people and what feels the most comfortable. I also realize that doing all of this pushes me somewhat out of my comfort zones and that isn't necessarily a bad thing.
This week I felt more aware of needing to work on increasing Sarah's eye contact and also aware that we are making progress. G., Sarah's speech therapist at home, noted that when Sarah and Amy were coming down the stairs together that Sarah was focusing on the stripes on his shirt and Amy was focusing on his face. While striped shirts are nice, faces are really where we want Sarah to have her focus. L. noted that while Sarah was absorbed in her own thing during some of their time together that she seemed somehow more easily reachable, perhaps more mature in her reachability, if that makes sense.
When Carl worked with her this week they spent some time drawing and practicing drawing circles. Sarah still needs a lot of help with this but it is wonderful that she is wanting to work on it. The next day she then told me she wanted to draw with a pen (this sounded more like "d-ul p-n" so it took a while for me to realize what she meant but then once I gave her pen and paper she asked for help to draw a circle. On one of the pages that Carl had used there was a picture of a stop sign and they had been drawing around it. I will try to print out more pictures of stop signs or other things that would be interesting for her to draw around.
After Sarah's bout with pneumonia she had lost a couple of pounds. Pre-sickness we had thought we no longer needed cyproheptadine. Well, now I will give abundant thanks to the makers of cyproheptadine (also called Periactin). Tuesday was not a great day for eating (to put it mildly) and at dinner that night (just me and the girls) I totally lost my temper and was begging Sarah to eat more. All my old fears and struggles came back in a torrent and even though I knew it was out of proportion with the situation, there it was. So, back to cyproheptadine (also good given allergy season). Her eating improved markedly, including the consumption of an entire donut from Dunkin Donuts during one of our after-school eating drives. I weighed her yesterday and she was back to 31lbs!! And she has a nice belly again and today I felt like I could really start including normal healthy low-calorie options. So in addition to her super juice and super milk and cheesecake today she also had cucumber, grapes, and a slice of turkey.
Sarah's language progress continues to amaze me. Not only does she attempt to repeat almost everything she hears, now she is doing so with 2-3 sounds from the new word. When we were talking about riding on the plane together to see Grandma and Grandpa and Sonia and A., Sarah then said "wash-n-t-n" for Washington, because that is where Sonia and A. live. I said that we lived in Pittsburgh and Sarah said "P-b-g" or some similar but garbled (and earnest) attempt. She also said "Dad f-da" (Dad is in Florida).
Today she saw Carl's red suitcase and was saying "ahn eeoo" (on you). I asked if she was thinking of the big red backpack that she used to ride in. She said yes and then pointed to her shoulder and said "sh-d-r". We brought it up and helped her to wear it. I had to keep holding it because it might weigh as much as she does and she can't stand up with it on or it pulls her backwards. We put babydoll in the backpack and sang "bouncin up and down in my big red backpack" and she grinned and started bouncing up and down. Meanwhile after one of the times that we said "backpack" Amy then said "ba pa." I don't know if she knew what she was saying but it was pretty awesome timing.
When we went for a walk earlier in the week and I asked if Sarah wanted to walk more she said "walk m-or" and then later as we approached home she said (without my asking) "walk s-ome m-or." I could go on and on about all the new things she is saying but I think you might be getting bored. How AMAZING!!!!!!!!!!! In just a few months she has made incredible, astounding progress. I love how much she can get us to understand and how much she understands. (and I know that when she can't get us to understand it is incredibly frustrating for her so she either throws a tantrum or reverts to talking about Dr. K. looking in her ears). I think she wants adults to be her repository as she composes what she is saying, especially if is is new. She waits for me to repeat what she said so that she knows I understand before she adds the next thing.
Music class! We are going to take a break from attending so that we can increase our Sarah-Rise time, but we certainly ended with a bang. (note: when I asked Sarah if she wanted me to sign up for more she said no and when I asked if she wanted to take a break she said "b-ek.") This week when we entered the classroom Sarah took off her shoes and sat criss-cross on the carpet facing the teacher, K. This in and of itself was rather amazing. K. was asking people for their favorite songs and she asked Sarah for hers. Sarah waved and started tapping her legs with her hands the way we do for the hello song. Then she signed song and said "la la la." She was attentive for probably 60 or 70% of the time and didn't attach herself nearly as much to other people's pants as she sometimes does. She danced with K., she clapped, she played with balls and scarves (though not quite as the rest of us were playing with them), she played with instruments (and was in tears over a kerfluffle with another kid over an instrument). She helped blow the lights off and on. After blowing the lights on she stayed near the door by herself and looked slightly pensive or sad. I kept looking at her as we sang the goodbye song, which includes lyrics about giving a hug to your mom or dad or the one who takes care of you. As the song ended she ran over to me, threw her arms around my neck from behind and said "hugga." !!!!!!!!!!!!! Then I said she could give K. a hug too and she promptly did so. This was such a good class that I was fully doubting my decision to take a break, which is why I asked Sarah. The time slot we would want is also full so a break we will take. Also, I think the reason class went so well is because of our Sarah-Rise time, so all the more reason to increase it.
This week I felt more aware of needing to work on increasing Sarah's eye contact and also aware that we are making progress. G., Sarah's speech therapist at home, noted that when Sarah and Amy were coming down the stairs together that Sarah was focusing on the stripes on his shirt and Amy was focusing on his face. While striped shirts are nice, faces are really where we want Sarah to have her focus. L. noted that while Sarah was absorbed in her own thing during some of their time together that she seemed somehow more easily reachable, perhaps more mature in her reachability, if that makes sense.
When Carl worked with her this week they spent some time drawing and practicing drawing circles. Sarah still needs a lot of help with this but it is wonderful that she is wanting to work on it. The next day she then told me she wanted to draw with a pen (this sounded more like "d-ul p-n" so it took a while for me to realize what she meant but then once I gave her pen and paper she asked for help to draw a circle. On one of the pages that Carl had used there was a picture of a stop sign and they had been drawing around it. I will try to print out more pictures of stop signs or other things that would be interesting for her to draw around.
After Sarah's bout with pneumonia she had lost a couple of pounds. Pre-sickness we had thought we no longer needed cyproheptadine. Well, now I will give abundant thanks to the makers of cyproheptadine (also called Periactin). Tuesday was not a great day for eating (to put it mildly) and at dinner that night (just me and the girls) I totally lost my temper and was begging Sarah to eat more. All my old fears and struggles came back in a torrent and even though I knew it was out of proportion with the situation, there it was. So, back to cyproheptadine (also good given allergy season). Her eating improved markedly, including the consumption of an entire donut from Dunkin Donuts during one of our after-school eating drives. I weighed her yesterday and she was back to 31lbs!! And she has a nice belly again and today I felt like I could really start including normal healthy low-calorie options. So in addition to her super juice and super milk and cheesecake today she also had cucumber, grapes, and a slice of turkey.
Sarah's language progress continues to amaze me. Not only does she attempt to repeat almost everything she hears, now she is doing so with 2-3 sounds from the new word. When we were talking about riding on the plane together to see Grandma and Grandpa and Sonia and A., Sarah then said "wash-n-t-n" for Washington, because that is where Sonia and A. live. I said that we lived in Pittsburgh and Sarah said "P-b-g" or some similar but garbled (and earnest) attempt. She also said "Dad f-da" (Dad is in Florida).
Today she saw Carl's red suitcase and was saying "ahn eeoo" (on you). I asked if she was thinking of the big red backpack that she used to ride in. She said yes and then pointed to her shoulder and said "sh-d-r". We brought it up and helped her to wear it. I had to keep holding it because it might weigh as much as she does and she can't stand up with it on or it pulls her backwards. We put babydoll in the backpack and sang "bouncin up and down in my big red backpack" and she grinned and started bouncing up and down. Meanwhile after one of the times that we said "backpack" Amy then said "ba pa." I don't know if she knew what she was saying but it was pretty awesome timing.
When we went for a walk earlier in the week and I asked if Sarah wanted to walk more she said "walk m-or" and then later as we approached home she said (without my asking) "walk s-ome m-or." I could go on and on about all the new things she is saying but I think you might be getting bored. How AMAZING!!!!!!!!!!! In just a few months she has made incredible, astounding progress. I love how much she can get us to understand and how much she understands. (and I know that when she can't get us to understand it is incredibly frustrating for her so she either throws a tantrum or reverts to talking about Dr. K. looking in her ears). I think she wants adults to be her repository as she composes what she is saying, especially if is is new. She waits for me to repeat what she said so that she knows I understand before she adds the next thing.
Music class! We are going to take a break from attending so that we can increase our Sarah-Rise time, but we certainly ended with a bang. (note: when I asked Sarah if she wanted me to sign up for more she said no and when I asked if she wanted to take a break she said "b-ek.") This week when we entered the classroom Sarah took off her shoes and sat criss-cross on the carpet facing the teacher, K. This in and of itself was rather amazing. K. was asking people for their favorite songs and she asked Sarah for hers. Sarah waved and started tapping her legs with her hands the way we do for the hello song. Then she signed song and said "la la la." She was attentive for probably 60 or 70% of the time and didn't attach herself nearly as much to other people's pants as she sometimes does. She danced with K., she clapped, she played with balls and scarves (though not quite as the rest of us were playing with them), she played with instruments (and was in tears over a kerfluffle with another kid over an instrument). She helped blow the lights off and on. After blowing the lights on she stayed near the door by herself and looked slightly pensive or sad. I kept looking at her as we sang the goodbye song, which includes lyrics about giving a hug to your mom or dad or the one who takes care of you. As the song ended she ran over to me, threw her arms around my neck from behind and said "hugga." !!!!!!!!!!!!! Then I said she could give K. a hug too and she promptly did so. This was such a good class that I was fully doubting my decision to take a break, which is why I asked Sarah. The time slot we would want is also full so a break we will take. Also, I think the reason class went so well is because of our Sarah-Rise time, so all the more reason to increase it.
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