I have been thinking that while the biggest thing we have changed in Sarah's life is to add Sarah-Rise time, there are also many other people who have been providing lovely support and that I wanted to acknowledge them too. Sarah has a wonderful teacher and assistant teacher at her preschool. And every week Sarah gets 30-60 min OT at school, 30 min PT at school, 30 min speech therapy at school, 30 min hippotherapy (horse back riding) at Slippery Rock University (Storm Harbour Equestrian Center), and 30 min twice a week with a speech therapist, G., at home.
This week we (me, Carl, volunteers/volunteers watching Amy) did 10hrs 20 min of Sarah-Rise time. Woohoo!
She learned how to put her coat on by herself using the upside down flip move. (coat on floor, she is at the hood end, sticks arms in sleeves and flips coat over her head).
At hippotherapy Sarah added a "t" to her "want" and an "l" to her "play."
Her baby doll wears pajamas and yesterday I worked with coaching enthusiastically (like a cheerleader coaxing the crowd) "pa! - ja!- ma!" Sarah repeated after each one and was looking at me and sort of giggling. We would go through rounds of 3-4 practices and then she would tell me she was done. We would return later. Then last night when it was time to get her own pjs on she said "pa-ja-ma" with very minimal pauses between the sounds.
On Friday a new girl was starting at school. Sarah has always been interested in other people and often talks about saying hi to them and is also interested and concerned when someone is upset, so this moment built on all of Sarah's innate sweetness rather than being, but it warmed my heart so I want to share.... the new girl was very upset to be at school. She was crying and crying. Sarah was playing at the table (as they start every morning). Sarah then got up and went over to the new girl and waved and said "hi." After a few moments it was clear that the teachers wanted her to go back to the table so I took her back and got her started on a puzzle. I just love her friendliness!
Puzzle progress... I have been continuing to introduce and invite work on the alphabet puzzle in the Sarah-Rise room. Sometimes she does a couple letters (favorites are M which goes on the moon and O which goes on the octopus, both of which letters and pictures Sarah indicates verbally). Then she tends to move to spinning the letter pieces on the sit-n-spin (they fly off) or to a different toy. Yesterday she wanted to nap when we still had 15 min I wanted to do in the room. So I said she could nap after she helped clean up all the puzzle pieces. I handed her pieces (in the correct orientation most of the time) and she put them in. all of them! with minimal help or coaching or refocusing by me and with minimal frustration on her part! So I think her puzzle stamina is increasing and her piece manipulation is improving a tiny tiny bit. Hurrah! (if I say to rotate a piece then she turns it on the same plane as it is already in; if I say it is upside down or to turn or spin it then she picks the piece up and turns it end over end as if this will magically help). Sometimes I wonder how often the rest of us do similar things in life (doing something and hoping it will magically change things but not really looking at what we are doing or thinking it through).
This afternoon we are celebrating Sarah's birthday (even though she has a bit of a cold) with an Elmo themed party (we have a huge elmo balloon that goes to the ceiling so Sarah gets to have a story about elmo bumping his eyes on the ceiling. I'm pretty excited and so now should go clean the house.
I hope all your puzzle pieces are fitting with minimal spinning or rotating required and with minimal frustration. :) As always thank you to all of you for your help and support. It means so much I always get teary thinking about it.
Sunday, January 29, 2012
Sunday, January 22, 2012
January 22
This past week we again totaled 7 hrs and 40 min of official Sarah-Rise time.
I had decided that one of our goals would be modeling nodding yes and shaking no, encouraging her to do the same. Monday morning Sarah shook her head "no" after I prompted her that she could say "no" instead of yelling "la la la." At first I didn't realize what I was seeing and I was going to prompt her to speak. Then I realized she had just done a new thing (as far as I know) and I was beside myself with celebrating. She was pleased with my celebrating too. On Tues she nodded yes during her time with L. (one of our fabulous volunteers). Each move has only occurred once so far but it is not something I remember to model very often.
Sarah's language has progressed notably. She has increased the words she can say more fully : nose, eat, beginning (buh-g-nn), bar, pants (p-ts), wire. The number of words she strings together has also increased a bit, or the occurrence of multi-word phrases has increased. She often tells us where she pees or poops (potty or diaper). And she indicates where she wants things, such as on the sofa or the table.
I watched a bit of a talk by Raun Kaufman and was reminded about some basics that I had forgotten so it is good to feel recharged remotivated. I had forgotten that joining an ism (a repetitive behavior where someone is rather unreachable and doesn't really make eye contact) is only for during the isming. If Sarah is reachable for a connection, as she so often is, then we go for building language and inspiring growth with whatever skills we want to work on. If she doesn't want to, then that is totally fine, but we can go for the gold in what we ask for. With that in mind I decided to start working on puzzles more, both in the Sarah-Rise room and in the family room with Amy around too. Puzzles have never been of huge interest to S and have often been a struggle and haven't really been fun for me either. I decided to have fun with the trying and to celebrate the tiniest participation on Sarah's part. The first time she put the turtle piece in the big three piece puzzle (moving it just a tiny bit on her own after I did hand-over-hand to line it up) I cheered and hugged and tickled her and raised her hand saying "I did the turtle piece! I did, that was me!" (as if it was her saying it). She then immediately took the piece out and put it back in. I repeated the celebration and have done so with every attempt. Then we worked on the alphabet puzzle in the Sarah-Rise room and I celebrated (though not quite as hugely) with each piece and she stayed with it and returned to it much more than I would have expected. She struggles a lot with how to manipulate a piece to make it fit and when I say to turn it she often picks the piece up and flips it over and around several times as if this will magically help. So first we need to bring a love of working with the puzzle and then with practice hopefully she will start improving her hand-eye-brain coordination.
I don't know when this change occurred but I realized that we used to have huge issues with Sarah hitting Amy or us and also pressing her chin into Amy (strong affection) and both of those hardly ever happen. Funny how when things go the way one wants it is easy to not notice because then things are as they "should" be (whatever that really means).
We had our first team meeting this past Tues night and I feel so blessed by our team of volunteers. This was a meeting with the people going in the room with Sarah. It went very well and I realized the importance of being a team and coming together collectively. I also feel totally blessed by the supportive volunteers watching Amy so I get time with S. It is so nice to notice the village helping us with our vision.
I have scheduled some consultations with W., one of the Son-Rise experts, and my first one is in early Feb. I'm nervous and excited. With so much of this I feel like I am bumbling and fumbling along doing a very imperfect job, but what matters is to keep going and doing my best and that that is so much more than doing nothing.
As I have mentioned before, getting time in the room with Sarah makes me enjoy parenting so much more. I was getting grumpy this morning and realized that I hadn't had much official time one-on-one with S in a couple of days. We then went in and had 2 great hours together with very little tantruming or screaming and come to think of it, perhaps no isming at all.
Thank you all for your support. Even if you aren't here in Pittsburgh it means so much to know you are here in spirit cheering us on. And an extra huge thanks to my wonderful volunteers and to my amazing husband Carl who has supported this endeavor every step of the way. And to Amy for being sunshiny so often and to Sarah for being her deeply amazing persevering self.
I had decided that one of our goals would be modeling nodding yes and shaking no, encouraging her to do the same. Monday morning Sarah shook her head "no" after I prompted her that she could say "no" instead of yelling "la la la." At first I didn't realize what I was seeing and I was going to prompt her to speak. Then I realized she had just done a new thing (as far as I know) and I was beside myself with celebrating. She was pleased with my celebrating too. On Tues she nodded yes during her time with L. (one of our fabulous volunteers). Each move has only occurred once so far but it is not something I remember to model very often.
Sarah's language has progressed notably. She has increased the words she can say more fully : nose, eat, beginning (buh-g-nn), bar, pants (p-ts), wire. The number of words she strings together has also increased a bit, or the occurrence of multi-word phrases has increased. She often tells us where she pees or poops (potty or diaper). And she indicates where she wants things, such as on the sofa or the table.
I watched a bit of a talk by Raun Kaufman and was reminded about some basics that I had forgotten so it is good to feel recharged remotivated. I had forgotten that joining an ism (a repetitive behavior where someone is rather unreachable and doesn't really make eye contact) is only for during the isming. If Sarah is reachable for a connection, as she so often is, then we go for building language and inspiring growth with whatever skills we want to work on. If she doesn't want to, then that is totally fine, but we can go for the gold in what we ask for. With that in mind I decided to start working on puzzles more, both in the Sarah-Rise room and in the family room with Amy around too. Puzzles have never been of huge interest to S and have often been a struggle and haven't really been fun for me either. I decided to have fun with the trying and to celebrate the tiniest participation on Sarah's part. The first time she put the turtle piece in the big three piece puzzle (moving it just a tiny bit on her own after I did hand-over-hand to line it up) I cheered and hugged and tickled her and raised her hand saying "I did the turtle piece! I did, that was me!" (as if it was her saying it). She then immediately took the piece out and put it back in. I repeated the celebration and have done so with every attempt. Then we worked on the alphabet puzzle in the Sarah-Rise room and I celebrated (though not quite as hugely) with each piece and she stayed with it and returned to it much more than I would have expected. She struggles a lot with how to manipulate a piece to make it fit and when I say to turn it she often picks the piece up and flips it over and around several times as if this will magically help. So first we need to bring a love of working with the puzzle and then with practice hopefully she will start improving her hand-eye-brain coordination.
I don't know when this change occurred but I realized that we used to have huge issues with Sarah hitting Amy or us and also pressing her chin into Amy (strong affection) and both of those hardly ever happen. Funny how when things go the way one wants it is easy to not notice because then things are as they "should" be (whatever that really means).
We had our first team meeting this past Tues night and I feel so blessed by our team of volunteers. This was a meeting with the people going in the room with Sarah. It went very well and I realized the importance of being a team and coming together collectively. I also feel totally blessed by the supportive volunteers watching Amy so I get time with S. It is so nice to notice the village helping us with our vision.
I have scheduled some consultations with W., one of the Son-Rise experts, and my first one is in early Feb. I'm nervous and excited. With so much of this I feel like I am bumbling and fumbling along doing a very imperfect job, but what matters is to keep going and doing my best and that that is so much more than doing nothing.
As I have mentioned before, getting time in the room with Sarah makes me enjoy parenting so much more. I was getting grumpy this morning and realized that I hadn't had much official time one-on-one with S in a couple of days. We then went in and had 2 great hours together with very little tantruming or screaming and come to think of it, perhaps no isming at all.
Thank you all for your support. Even if you aren't here in Pittsburgh it means so much to know you are here in spirit cheering us on. And an extra huge thanks to my wonderful volunteers and to my amazing husband Carl who has supported this endeavor every step of the way. And to Amy for being sunshiny so often and to Sarah for being her deeply amazing persevering self.
Sunday, January 15, 2012
January 15
This past week was the first week with volunteers to watch Amy and I started training two volunteers to be in the playroom with Sarah. I train two more this week. I also evaluated Sarah using the developmental model that the Autism Treatment Center of America/Son-Rise Program provides. I had evaluated her over the summer when I did the parent training and this was the first time since then. The idea is to evaluate her every 4-6 weeks and create specific goals and be able to notice progress more specifically.
Given that so much time has passed and that I didn't fully understand some of the developmental model eval before some of the growth noticed may appear bigger than it actually was. I don't actually remember her language level very well from the summer. I know she had many words that she used just one sound to convey and I know that has changed dramatically to include multiple sounds per word and several complete words. Anyway, over the summer I noted that she had acquired 5 words or more that she could verbally communicate but that she wasn't yet in in the 5-60 word category. This weekend I wrote down all of her words including partial words and full words. 221 words/partial words!!!!!!!!! And 33 of those I count as being full words where she really says the whole word (even if her r isn't pronounced right). I'm sure I'm not even remembering all of the words she does have. And her comprehension is certainly even greater.
Her words:
red blue black white brown yellow pink purple green orange ears eyes nose teeth head neck back leg foot toe hair shirt shorts pants socks overalls machine massage shoe coat cold brr hot apple cheese mac (and cheese) juice milkshake mint chocolate granola bar pull push on in off out yogurt goldfish fish matching squares card cord playdough run walk stroller go boom blow tissue bump snow play boot let ("let go") fruit leather zipper Misaki Gregory Sonia Adam Caitlin Amy Mom Dada MomMom Granddad Brian Lani Denise pig dog music Zo Zoe Cara party Scrooge duck fall floor ball big potty pee poop chicken soup banana lemonade help please suds soap water want I you Sarah ipad baby movie nap bed now Steelers frito fries cheesecake bites dibs jump door wire line railing wet dry leaf strawberry blanket cow goat tail paw dirty hand vanilla bike ride Bud horse hi bye cut stay hurt watch bead share b e w row step stairs down up all done more again move bubble light candle gate fuzzy belly dino snuggle puppy table chair egg scrambled baloon ham bagel hot sheet Elmo button belt jeans seem stripe kid ramp train tent block poke hole pinch finger school car ring seed rock dot shh sit mad sad sleep heart tap flower diaper wipe pillow open close one two three kiss glasses wall bunny
Some of these are contextual in terms of knowing what she means and most of these only Carl and I can understand but I know she knows these words and is trying to communicate them to me, often looking at me as she tells me what she sees or what happened or what she wants.
Given that so much time has passed and that I didn't fully understand some of the developmental model eval before some of the growth noticed may appear bigger than it actually was. I don't actually remember her language level very well from the summer. I know she had many words that she used just one sound to convey and I know that has changed dramatically to include multiple sounds per word and several complete words. Anyway, over the summer I noted that she had acquired 5 words or more that she could verbally communicate but that she wasn't yet in in the 5-60 word category. This weekend I wrote down all of her words including partial words and full words. 221 words/partial words!!!!!!!!! And 33 of those I count as being full words where she really says the whole word (even if her r isn't pronounced right). I'm sure I'm not even remembering all of the words she does have. And her comprehension is certainly even greater.
Her words:
red blue black white brown yellow pink purple green orange ears eyes nose teeth head neck back leg foot toe hair shirt shorts pants socks overalls machine massage shoe coat cold brr hot apple cheese mac (and cheese) juice milkshake mint chocolate granola bar pull push on in off out yogurt goldfish fish matching squares card cord playdough run walk stroller go boom blow tissue bump snow play boot let ("let go") fruit leather zipper Misaki Gregory Sonia Adam Caitlin Amy Mom Dada MomMom Granddad Brian Lani Denise pig dog music Zo Zoe Cara party Scrooge duck fall floor ball big potty pee poop chicken soup banana lemonade help please suds soap water want I you Sarah ipad baby movie nap bed now Steelers frito fries cheesecake bites dibs jump door wire line railing wet dry leaf strawberry blanket cow goat tail paw dirty hand vanilla bike ride Bud horse hi bye cut stay hurt watch bead share b e w row step stairs down up all done more again move bubble light candle gate fuzzy belly dino snuggle puppy table chair egg scrambled baloon ham bagel hot sheet Elmo button belt jeans seem stripe kid ramp train tent block poke hole pinch finger school car ring seed rock dot shh sit mad sad sleep heart tap flower diaper wipe pillow open close one two three kiss glasses wall bunny
Some of these are contextual in terms of knowing what she means and most of these only Carl and I can understand but I know she knows these words and is trying to communicate them to me, often looking at me as she tells me what she sees or what happened or what she wants.
Sunday, January 8, 2012
January 8
We have now been back in the swing of things at home for about a week, at the level I was doing before the Christmas break. That means some days we get none and some days I get 30-60 min depending on Amy's nap and Carl's work schedule. This week I think I've had about 4 official sessions and then some additional time with Amy around too. I feel like I'm getting back in a groove I didn't quite realize I had lost. This groove involves extra love and enthusiasm for Sarah's accomplishments and more requesting of her in the speaking department.
We visited my family for Christmas and my mom noticed a definite improvement in Sarah's presence and connection and eye contact compared to when she saw Sarah in October. When I did a short SR session in Philly my mom also noticed an improvement directly after the session. By the time our travels were done I wasn't sure I was seeing anything new but I wasn't doing any sessions with her.
When watching her favorite movie of late (Mickey's Christmas Carol) she makes eye contact frequently to share what she sees or what she is repeating: zzz-duck (scrooge mcDuck), up-st duck (up stairs duck/ scrooge is going upstairs), oooooo (when Marley/Goofey makes an oooo sound). She giggles a lot with the ghost of Christmas Past and with the Ghost of Christmas Future and Scrooge falling into the grave. Physical humor gets her every time. She also claps when there is the dance party at Fezziwigs and sometimes says "s-c paee" (music party).
When Amy was very upset yesterday Sarah came over and gave her many kisses. Sarah has always been loving and affectionate so I don't know if this is because of SR or not but was adorable in any case.
In the SR playroom she has had very good attention and eye contact the past few sessions, which was notably missing during our first few sessions back after vacation (though this may have been due to putting some new toys in there that were too absorbing).
This week is the start of when I have volunteers coming to watch Amy and/or do SR time with Sarah. I am super excited!!!!!!! To reenergize myself when I start to doubt I have been watching testimonials from parents who have used the Son-Rise technique and it is really amazing how much it has helped so many kids go from being severely autistic to being social, verbal, "normal" people. Again, we don't know where Sarah will go and she isn't severely autistic at all but I know I lose my temper much less when we are doing Sarah-Rise/Son-Rise.
I hope you are all enjoying this brand new year.
We visited my family for Christmas and my mom noticed a definite improvement in Sarah's presence and connection and eye contact compared to when she saw Sarah in October. When I did a short SR session in Philly my mom also noticed an improvement directly after the session. By the time our travels were done I wasn't sure I was seeing anything new but I wasn't doing any sessions with her.
When watching her favorite movie of late (Mickey's Christmas Carol) she makes eye contact frequently to share what she sees or what she is repeating: zzz-duck (scrooge mcDuck), up-st duck (up stairs duck/ scrooge is going upstairs), oooooo (when Marley/Goofey makes an oooo sound). She giggles a lot with the ghost of Christmas Past and with the Ghost of Christmas Future and Scrooge falling into the grave. Physical humor gets her every time. She also claps when there is the dance party at Fezziwigs and sometimes says "s-c paee" (music party).
When Amy was very upset yesterday Sarah came over and gave her many kisses. Sarah has always been loving and affectionate so I don't know if this is because of SR or not but was adorable in any case.
In the SR playroom she has had very good attention and eye contact the past few sessions, which was notably missing during our first few sessions back after vacation (though this may have been due to putting some new toys in there that were too absorbing).
This week is the start of when I have volunteers coming to watch Amy and/or do SR time with Sarah. I am super excited!!!!!!! To reenergize myself when I start to doubt I have been watching testimonials from parents who have used the Son-Rise technique and it is really amazing how much it has helped so many kids go from being severely autistic to being social, verbal, "normal" people. Again, we don't know where Sarah will go and she isn't severely autistic at all but I know I lose my temper much less when we are doing Sarah-Rise/Son-Rise.
I hope you are all enjoying this brand new year.
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